LymeSpot - Lyme Disease News & Information

LymeSpot Moving Forward

2006-02-12T12:53:00.000-06:00

LymeSpot has moved to LymeDiseaseNews.com. Thank you all for your support over the last year. I have transferred all the old articles from LymeSpot to the new site. LymeDiseaseNews.com will continue to bring you the most relevant and informative news from the battle against Lyme Disease.

Letter to Eurolyme

2006-02-11T15:03:00.000-06:00

EuroLyme is an Internet patient support group, for sufferers of Lyme Disease and associated diseases. It was founded in 2001 and now has over 1000 members.

Dear Lyme activist,

Lately I have seen some patients who appear to have had the diagnosis of Lyme disease given serious consideration by doctors who perhaps would not previously have given Lyme much attention. If so this is good news.

It seems that in the UK in the NHS some consultants are starting to appreciate Lyme disease for what it is: A poly-symptomatic, relapsing, insidiously progressive and highly unpleasant illness which may be quite common and may be present with otherwise normal blood tests and absent physical abnormalities.

In America last year I had the feeling that many Lyme literate doctors felt that we had turned the corner and at last progress was being made. I hope the same is true here. I think it will only be a matter of time before a doctor is found to be negligent for failing to diagnose Lyme and this will really focus doctors' attention on the condition.

There are many potential obstacles: Even if Lyme is diagnosed there is the problem of appropriate treatment and we do not know what constitutes adequate or appropriate treatment but I believe in the future doctors will have to be more prepared to listen to patients who have relapsed.

On this drab February Monday I hope this message gives some comfort to those who are battling to have this condition recognised and taken seriously.

Doctor David Owen

BSc MB BCh LLM

February 6th, 2006

Dr. David Owen has trained at Ilads (International Lyme and Associated Diseases Society). His private practice is based in Cardiff.

The Trouble With Ticks: A Common Source of Illness

2006-02-10T22:34:00.000-06:00

Medscape
Laurie E Scudder, MS, PNP

Tick-Borne Illness

The continued emphasis on infectious disease at the ACNP meeting continued with a presentation on management of tick-borne illnesses by Melissa Roberts JD, MSN, FNP, a clinical instructor in the Graduate School of Nursing at the University of Missouri, Kansas City.

Tick-borne diseases are the most common vector-borne illnesses in the United States. The mechanism of transmission of disease through tick bites is not well understood, though it is speculated that pathogens harbored in the gut of ticks may migrate to their salivary glands during a blood meal and are then transmitted to the host via the bite.

Ticks are ubiquitous in the United States, with multiple tick types, all members of the class Arachnida, responsible for 7 distinct clinical diseases. In the northeastern and middle Atlantic states, the deer tick carries the spirochete that causes Lyme disease. The Rocky Mountain wood tick and the American dog tick, found in both the eastern and western United States, spread Rocky Mountain spotted fever. Ticks are also responsible for 5 other less common, though quite distinct, diseases, including ehrlichiosis, tularemia, Colorado tick fever, tick paralysis, and relapsing fever.

As is the case with mosquito-borne illnesses, the mainstay of therapy for tick-borne illnesses is not treatment, but prevention, with a focus on reducing exposure to ticks through avoidance of tick habitats, use of tick repellents and protective clothing, and frequent tick checks, especially following a period of time outdoors in a wooded area.

Lyme Disease

Lyme disease is the most common of the tick-borne diseases in the United States, with almost 24,000 cases reported in 47 states in 2002, an increase of 40% over the incidence in 2001. Twelve states, Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Wisconsin, accounted for 95% of cases reported nationally.

Lyme disease, caused by Borrelia burgdorferi, is usually diagnosed and treated according to clinical manifestations, most notably a classic erythema migrans rash that occurs in up to 50% of infected patients. Laboratory testing is useful for patients with confusing presentations, although no single serologic test is definitive.

Lyme disease is stratified into 3 stages: early localized, early disseminated, and late disease. Treatment with doxycycline in patients older than 8 years or amoxicillin in those younger than 8 at the early localized stage is universally effective. Generally, the longer the patient has been ill prior to therapy, the longer the duration of treatment must be, and the need for more aggressive treatment increases. The duration of therapy should be guided by clinical response, rather than by an arbitrary (eg, 30-day) treatment course.

Manitoba sees record number of lyme disease cases

2006-02-10T15:46:00.000-06:00

StarPhoenix - Saskatoon,Saskatchewan,Canada
Manitoba health officials are reporting a record five cases of lyme disease in 2005.

Until last year, there had only been two cases on record in the province's history.

Lyme disease is caused by a bacteria that can be carried by a deer tick the size of a sesame seed.

The disease can cause flu-like symptoms and a bulls eye-like rash, and left untreated it can lead to complications of the heart, nervous system or joints.

Experts have suspected there aren't enough deer ticks in Manitoba to breed here.

They think the ticks are coming into the province as hitchhikers on back of American birds from Minnesota and Wisconsin, where the ticks breed.

How could this happen to my family?

2006-02-10T08:35:00.000-06:00

Jane Morris tells of her husband’s illness
The Narrowsburg River Reporter
Jane and William “Chris” Morris moved to Narrowsburg several years ago from Titusville, NJ. In what now seems like another life, Chris worked as an executive vice president of a banking investment firm. Six years ago, he was diagnosed with Lyme disease.

“It was central nervous system Lyme disease,” said Jane, and it affected both his brain and his immune system. “He became so sick, he could not put a sentence together. He could not walk down the road.”

Chris began an aggressive treatment of antibiotics, but as a result of the disease, “he lost his job and he lost his health.” The couple began to go through their savings as well. “At that time,” said Jane, “we wondered creatively what we could do together, to rebuild our lives.”

The couple sold their home in New Jersey and purchased what became the Riverlights Bed and Breakfast and Yoga Studio on Route 97.

They spent two years refurbishing the house and creating a yoga studio for Jane, who has over 30 years of training in Kripalu yoga and was a staff yoga therapist at Princeton Medical Center.

Chris began exhibiting erratic behavior two years ago, said Jane.

“Over that time, I noticed a shift in his personality,” she said. “I began to notice a pattern.” Chris would go from being “depressed, losing weight, having very high fevers and staying in bed” to entering a manic phase “when he wouldn’t eat, he wouldn’t sleep, he spent money. And he’d have more energy than I do. One day he can’t rise from bed, and the next, he’s full of energy; all the fevers and illnesses are gone.”

Jane began to seek help for her husband. She received differing opinions as to whether his symptoms could be the lingering effects of Lyme disease. Some doctors said he was exhibiting late-stage Lyme disease syndrome. Others disagreed, saying anyone who had been taking the rigorous antibiotics used to treat Lyme could not possibly still have the bacteria in his body. Chris had taken the antibiotics for five years, said Jane.

The first police encounter

In May of last year, Jane called 911 because Chris had climbed into bed with a loaded shotgun. As a result, he was charged with a misdemeanor and jailed for 10 days. His guns (a pistol and two shotguns) were confiscated. Some time after that incident, he spent 20 days in Bon Secours Hospital in Port Jervis, where he was diagnosed as bi-polar and given medication.

“At that time,” said Jane, “he was also withdrawing from a valium addiction” that was a result of another diagnosis Chris received from a psychiatrist with whom he had been treated for a long time.

“He was diagnosed as having post-traumatic stress disorder,” said Jane. “That doctor prescribed valium for him,” and Chris developed an addiction to prescription drugs.

During this period, Jane continued to seek medical care for her husband. They began seeing doctors in Westchester Medical Center, and went for marital counseling. Concerned with his violent behavior and subsequent incarceration, Jane told the authorities, “My husband is sick. He needs medical care.” She wrote a letter to Family Court stating the same.

But the situation did not improve. “Chris was in denial” about his condition, said Jane. Eventually she took out a restraining order and Chris moved out the house.

In July, he moved back in. Things seemed to be settling down. “Why did I take him back?” said Jane. “He’s my husband. He had been very loving and loyal to me before he got sick. In those days, he was my rock.”

Jane began a new job two weeks ago as a physical education teacher at the Family Foundation School in Hancock. On the home front, she began noticing the signs. “He was late picking me up for work,” said Jane. “He was having seizures, and he would just zone out. He wouldn’t move. He wouldn’t answer me.”

The misdemeanor charges against Chris had been dropped and several days before the stand-off, said Jane, “the township returned his guns.”

Late on Thursday night, she said, “We were having an argument. Looking back, I can see I should not have argued. He was becoming very agitated.” Jane went to bed but later got up and fled the house, and called 911. She spent the night in the police barracks in Narrowsburg while her husband engaged in a 12-hour standoff with police.

Is it possible that Chris has bi-polar disorder or is having a negative reaction to medication?

His diagnosis is uncertain, but “the stress of losing everything, of all we have gone through, has certainly led up to this,” she said.

“We are trying to find out what’s wrong. It has not been an easy journey. We’ve just been plodding along, trying to cope.

“We have been married for 21 years. Most of it has been great. He is my husband, but I can’t go on living like this.

“He’s sick. He needs help. He needs hospital care,” she said.

Timeline to a standoff

2000: William “Chris” Morris was diagnosed with Lyme disease. The family says it has affected his central nervous system, immune system and brain.

2000-2004: Morris is treated with antibiotics, loses his position as an executive vice president of a banking investment firm.

May 2004: Morris and his wife of then 15 years, Jane, move from Titusville, NJ. They renovate and open Riverlights Bed and Breakfast and Yoga Studio on Route 97 in Narrowsburg.

May 5, 2005: Morris surrenders his pistol permit and guns to the Sullivan County Sheriff’s Department, after law enforcement officers were called to the residence for a domestic dispute.

May 11, 2005: Jane finds Morris in bed with a rifle pointing toward him. Jane calls 911 and 911 dispatches a call for an armed, suicidal subject. Sheriff’s Corporal Paul Slavik and Deputy Keith Stephenson talk Morris into surrendering peacefully. Deputies find an antique rifle and a shotgun, both empty, and a loaded 7 mm Savage rifle.

Morris spends 20 days in Bon Secours Hospital in Port Jervis where he is diagnosed as bi-polar and given medication. He struggles with an addiction to Valium and is diagnosed by a psychiatrist with post-traumatic stress disorder.

May 22, 2005: Morris is involved in a single car crash on Route 97, from which he sustained injuries. There is speculation that it may have been a suicide attempt.

July 11, 2005: Sheriff’s department deputies are called to the residence for a domestic dispute, which is resolved, Detective Starner says.

February 2, 2006: According to Jane, the sheriff’s department returns Morris’ permit and firearms.

February 2, 2006: According to Dave Barnes, a Narrowsburg resident and friend of Morris, the couple get into a dispute about the return of Morris’ guns and permit.

February 3, 2006: Jane flees the home around 12:30 a.m. and calls 911. At 1:09 a.m. sheriff deputies respond. The standoff is resolved at 1:45 p.m.

Musician Daryl Hall talks about battle with lyme disease

2006-02-08T07:13:00.000-06:00

The Star Online

Musician Daryl Hall, who was diagnosed with lyme disease last year, says he felt his body "shut down'' during a concert last summer when the symptoms first hit him.

The 56-year-old Hall, half of pop duo Hall and Oates, said he was in Phoenix at the time.

"I was in the middle of a song and it just felt like a complete core body shutdown,'' Hall said in an interview with "Inside Edition'' that was scheduled to air Wednesday. "It's like somebody just turned the switch. I felt like I was going to faint, throw up, fall down, everything all at once.''

Hall said he had mixed emotions after being diagnosed.

"At first, I had relief because I said, 'OK, now I know that I have something,''' he said. "But then the fear came. The more I read about this, the more I heard about it, the more it scared me.''

Lyme disease, caused by the bite of infected deer ticks, can cause arthritis, neurological problems and encephalitis, a potentially deadly brain inflammation. Early signs include a red rash resembling a dartboard bullseye that slowly spreads and flu-like symptoms.

Hall and Oates are best known for a stream of 1980s hits, including "Kiss on My List,'' "Maneater'' and "I Can't Go for That (No Can Do).''-AP

Reported Morgellons cases increase

2006-02-07T07:57:00.000-06:00

By ERIN OCHOA / KVUE News

Some call it a mysterious skin disease, others a psychological disorder.

Morgellans is described as a parasite-like disease, that makes patients feel like they have bugs crawling under their skin.

KVUE News first told you about it a year ago. Since then, the number of reported cases has increased dramatically.

Lesions virtually cover Stephanie Bailey's arms and legs, and now, even her chest. She says they produce black -- and colored fibers, and itch uncontrollably.

"It feels like something's crawling on you, but then you look and there's nothing there," she said.

Nurse practitioner, Ginger Savely, studies the skin disease, called Morgellons.

The number of cases she's seen has jumped from just more than a dozen to about a hundred in the past year.

"When you start to hear dozens and dozens of people telling the exact same story and then you start to look and you really pay close attention and start to look at all the things they're talking about and you realize this is very real," Savely said.

Due to a lack of research, government health agencies don't recognize Morgellons as an actual disease. Patients are, instead, diagnosed with psychological disorders.

But over the past year, Savely has made some very unofficial observations which she hopes may help to explain and eventually treat the disease.

"A vast majority of them had some exposure to soil immediately before coming down with the symptoms, so they were either exposed to dirty water, they were gardening, they got a splinter stuck in them," she said.

She says she's noticed - patients with chronic illnesses that suppresses their immune systems, such as Lyme Disease, are more prone to Morgellons.

"It's causing tremendous suffering and something needs to be done about it," Savely said.

That's why the Morgellons Research Foundation was formed about five years ago. Savely says, since then, about 10,000 people have come forward with similar symptoms, but she fears there are still many more cases not yet reported.

"I think the more people that come forward, the more the public health departments are going to realize - hey, this really is a problem," she said.

Fore more information on Morgellons and how you can help research efforts, go to www.morgellons.org .

Gregory Lanzaro named head of vector-borne diseases

2006-01-25T23:09:00.000-06:00

Central Valley Business Times - Stockton,CA,USA
Medical entomologist Gregory Lanzaro, director of the University of California Mosquito Research Program, has been named the new director of the UC Davis Center for Vector-borne Diseases.

Mr. Lanzaro has been the point person for both the Mosquito Research Program (UCMRP), a systemwide program of the UC Division of Agriculture and Natural Resources, and Center for Vector-borne Diseases, a unit of the UC Davis School of Veterinary Medicine and managed in collaboration with the UC Davis College of Agricultural and Environmental Sciences and the School of Medicine.

"Pathogens transmitted by insects and their relatives rank among the most important infectious diseases globally," says Mr. Lanzaro, in a written comment. "Diseases such as malaria, dengue and leishmaniasis take millions of lives annually and wreak havoc on the economies, and therefore quality of life, for many millions more throughout the world."

The United States, he says, is not immune to the threat of arthropod-borne disease. "Lyme disease, plague and a host of mosquito-transmitted encephalitic viruses are long-standing public health concerns in this country," Mr. Lanzaro says. "The recent introduction of West Nile virus serves to illustrate the capacity of insect-transmitted disease agents to move into parts of the world in which they were never previously present and spread rapidly once introduced”

Coming Soon: Confronting Lyme Disease

2006-01-23T15:16:00.000-06:00

The book, Confronting Lyme Disease: What Patient Stories Teach Us, will be available for sale in Spring 2006. A formal press release will be issued when it is available for sale to the public.

Please visit the book's website at http://www.confrontinglyme.com/ to view a sampling of the book's contents and information about the authors. The book will be available for purchase from this site in the future. Payment will be through PayPal, and we can be contacted about bulk order discounts.

Two styles of books will be sold:
1. Full color interior photo pages (14 photos)
2. Black/white interior photo pages(14 photos)

Black and white photo books will be available from the website and through several internet sites including http://www.amazon.com/ and Booksurge Bookstore http://www.booksurge.com/bookstore.php3 where you can purchase the book with a credit card. Booksurge will also offer a downloadable e-book version.

Color photo books will be sold exclusively through the book's official website http://www.confrontinglyme.com/ .

You may contact the authors from the website if you have any questions using the "Contact us" link at the bottom of the website.

Please look for the formal press release in approximately 4 - 8 weeks!

Worn down by Lyme

2006-01-21T14:45:00.000-06:00

Columbia Daily Tribune
Family says disease caused death at 37.

Although Kym Cooper’s autopsy says she died of natural causes, her family believes her death Monday while she was sleeping was a product of Lyme disease, an illness she struggled with for eight years.

"Anybody is going to wear down," said Adam Boster, Cooper’s brother-in-law. "I don’t think we’re meant to go forever in that stage."

Cooper lived with the severe pain and fatigue that accompanied the disease she contracted in 1998. She detailed her physical torment and battle with doctors who didn’t understand her sickness in a 2001 letter her mother found three days after her death at age 37.

"This came from Kym," Susan Cooper said yesterday, showing the letter to a reporter. "There were just so many people who couldn’t understand how a tick made her this sick."

In the United States, ticks are responsible for more human disease than any other insect, the Missouri Department of Health and Senior Services says. Lyme disease is just one of several illnesses that can result from a tick’s bite.

The disease is caused by a bacterial agent, Borrelia burgdorferi. Symptoms include fever, severe headache, muscle or joint aches and a red rash around the site of the initial bite.

Kym Cooper had worked as an activities director for a Fayette nursing home. After she was bitten by a tick in 1998, she just picked it off and kept walking, sister Steffany Boster said. It’s unclear whether the bite occurred on a trail in Boonville or in Columbia.

"I don’t think she ever gave it any thought," Boster said.

A few days later, a red rash developed around the bite.

A Boonville doctor advised Cooper to apply an ointment and forget about it. But she then began to experience extreme fatigue and had trouble walking and speaking.

"I knew something was really wrong," Cooper wrote in the 2001 letter.

Cooper’s Boonville doctor then diagnosed the problem as a stress disorder.

But as Cooper’s health declined, another doctor referred her to Gordon Christensen, a physician and professor at the University of Missouri-Columbia. Nearly a year after the bite occurred, Christensen diagnosed Cooper with Lyme disease - something he’s only diagnosed three times in his career.

"It’s a real challenge," Christensen said. "We don’t know a lot about this."

In Missouri, there were 15 cases of Lyme disease reported in 2004, said Karen Yates, the vector-borne diseases program coordinator at the Department of Health and Senior Services.

"We really have a hard time tracking that," Yates said yesterday. "We suspect that there are other people who do become ill and are not being counted."

Some cases of Lyme disease are incurable, but there is no diagnostic test to determine the presence of the disease.

For Christensen to make a strict diagnosis, he had to follow a strict set of questions and symptoms laid out by the federal Centers for Disease Control and Prevention. Making matters even more complicated, Borrelia burgdorferi has never been isolated in a patient from Missouri.

"By that definition, there’s never been a case of Lyme disease in Missouri," Christensen said.

To test for Borrelia burgdorferi, a blood sample must be taken to see whether blood reacts to the illness’s genetic material, but other things can cause a reaction.

"It’s a big mess," Christensen said of efforts to make such a diagnosis.

Christensen said these unknowns have divided most physicians into one group that doesn’t believe Lyme disease has occurred and treats the symptoms and another group that aggressively treats the disease with antibiotics.

"I’m kind of right in the middle," Christensen said. "I don’t think either group has got it right."

Confusion like this drove Cooper to type a one-page letter.

"If you run into a doctor that says Lyme disease doesn’t exist, it’s time to find another doctor," said Adam Boster, Cooper’s brother-in-law.

Yates said that of Missouri’s 15 cases of Lyme disease in 2004, three affected residents of Boone County. The state department of health says the incidence of the disease was 2.21 per 100,000 in Boone County, compared with the state average of 0.46 per 100,000.

No confirmed Lyme disease case has been fatal.

"It’s a chronic illness, but it’s not considered to be lethal," Christensen said. "It’s the complications."

The CDC lists several tips to protect against ticks: Avoid tick-infested areas, wear light-colored clothing, use tick repellent and perform daily tick checks.

If someone finds a tick embedded in his or her skin, the CDC Web site recommends using fine-tipped tweezers to grab the tick close to the skin and gently pull it straight up to keep its head intact with its body. After handling the tick, wash hands, clean the bite and watch for signs of illness.

As Cooper’s family members mourn, they are preparing for a service at 2 p.m. tomorrow at Memorial Funeral Home. They have asked for donations to the National Lyme Disease Association because they know - through Cooper’s letter - how important Lyme disease education can be.

"I hope that whoever reads this letter will have better understanding of what it is like to live like this," Cooper wrote. "Please, I need all the support I can get because I am not getting better only worse."

Crippling disease sweeps Indian Ocean island

2006-01-20T17:41:00.000-06:00

PARIS (AFP) - Doctors on the Indian Ocean island of Reunion are battling an epidemic of a crippling mosquito-borne disease that has no known cure, French Health Minister Xavier Bertrand said.

About 7,200 cases of "chikungunya" had been recorded, including 1,600 cases last week alone, the minister told the French upper house.

"It is a major public-health issue," he told senators.

Chikungunya is Swahili for "that which bends up" and refers to the stooped posture of those afflicted by the non-fatal disease for which there is no known vaccine or cure.

Authorities on the volcanic island east of Madagascar, a French overseas department with a population of 760,000, have earmarked 600,000 euros (720,000 dollars) to fight the outbreak, including special mosquito-eradication brigades.

Kym Cooper, 1968-2006

2006-01-19T07:40:00.000-06:00

Columbia Daily Tribune, Columbia, MO
Kimberly Ann "Kym" Nagle Cooper, 37, of Columbia passed away Monday, Jan. 16, 2006, at her home after a long battle with Lyme disease.

Memorial services will be held at 2 p.m. Sunday, Jan. 21, at Memorial Funeral Home with Adam Boster officiating.

Kym was born Aug. 2, 1968, to Steve and Susan Telin Nagle at Fort Leonard Wood.

Survivors include her mother, Susan Cooper, and stepfather, Gary, of Columbia; her father, Steve Nagle, and stepmother, Robyn, of St. Louis; three sisters, Steffany Boster and her husband, Adam, of Columbia, Margaret Nagle of St. Louis and Alecia Nagle of Redlands, Calif.; one brother, Robert Nagle of St. Louis; and four nieces and nephews, Jace, McKayley, Faith and Lukas Lee Boster.

Kym is remembered for her love of family, music, dancing and the great Missouri outdoors.

In her childhood she studied gymnastics, which grew into a lifelong love of modern dance. She was an accomplished swimmer and especially enjoyed her many visits to Finger Lake State Park and Rock Bridge State Park. Last summer, Kym rescued a small boy from drowning in a backyard pool. Before contracting Lyme disease, she served as a licensed practical nurse and is remembered for her kind heart and special skills as activities director working with senior citizens at Fayette Nursing Home.

Family is recommending donations be made to the National Lyme Disease Association Inc., a not-for-profit corporation, through the association’s Web site, www.lymediseaseassociation.org, or directly to the Lyme Disease Association Inc., P.O. Box 1438, Jackson, N.J., 08527.

Tributes can be left online at www.memorialfuneralhomeandcemetery.com

2006-01-16T22:43:00.000-06:00

"The ultimate measure of a man is not where he stands in moments of comfort, but where he stands at times of challenge and controversy."
--Martin Luther King, Jr.

Study: Napoleon's Army Destroyed by Lice

2006-01-16T19:33:00.000-06:00

Discovery Channel News
Lice played a key role in Napoleon Bonaparte's disastrous invasion of Russia in 1812, according to genetic research into the skeletal remains of the ill-fated army.

Napoleon marched into Russia in the summer of 1812, leading the largest army Europe had ever seen, some half million soldiers, toward Moscow.

The invasion was the French emperor's answer to tzar Alexander I's refusal of the Continental System, a system of economic preference and protection within Europe aimed to exclude British trade and reinforce the French economy at the expense of the other states.

Six months later, the Grande Armée was reduced to 25,000 men who retreated to Vilnius, Lithuania, in the freezing cold. Only 3,000 survived the war, weather and disease to continue the retreat. The dead were buried in mass graves.

One such grave, containing between 2,000 and 3,000 corpses, was discovered in 2001 in Vilnius during some construction work.

Analysis of the remains produced hard genetic evidence that louse-borne pathogens were a major factor in the French retreat from Russia, Didier Raoult, of the Université de la Méditerranée in Marseille, and colleagues reported in the January issue of The Journal of Infectious Diseases.

"We believe that louse-borne diseases caused much of the death of Napoleon's army," Raoult told Discovery News.

Human body lice transmit Borrelia recurrentis, Bartonella quintana and Rickettsia prowazekii, the agents of louse-borne relapsing fever, trench fever and epidemic typhus, respectively.

Raoult and colleagues analyzed two kilograms of earth from the mass grave containing bone fragments and remnants of clothing and identified body segments of five lice.

Three of them carried DNA from relapsing fever.

The scientists then analyzed dental pulp from 72 teeth, taken from the remains of 35 soldiers. The sequencing revealed DNA of Bartonella quintana in seven soldiers.

"We believe that these findings provide firm evidence that the soldiers had trench fever," wrote the researchers.

The team also detected the DNA of Rickettsia prowazekii in three other soldiers, indicating that Napoleon's army also suffered from epidemic typhus.

Overall, nearly one-third of Napoleon's soldiers buried in Vilnius were affected by louse-borne infectious diseases, the researchers concluded.

"This is very important and exciting research because it provides compelling physical evidence for the impact of louse-borne diseases on Grand Army troops during Napoleon's invasion of, and retreat from, Russia," Robert Peterson, an expert of insect ecology and agricultural and biological risk assessment at Montana State University, told Discovery News.

Neuropathy Mystery Solved. New Study proves electronic ReBuilder System Effective for Neuropathy.

2006-01-12T14:58:00.000-06:00

PR Web via Yahoo! News
ReBuilder Medical, Inc. today released an independant study of 480 patients over a 3 year period. Results showed that compared to a placebo, the Anodyne and ReVitamed Infrared systems, and Pfizer's and Eli Lilly's drug therapies, the double blind study demonstrated a 95% response rate to the ReBuilder home therapy. (The competitive Anodyne and Revitamed quipment fared no better than the placebo, while the prescription drugs offered only a 45% improvement and serious side effects.)

Neuropathy is a major complication of diabetes and 60% of those with diabetes will develop the tingling, numbness, and pain of neuropathy in thier feet and hands. Currently the most common treatment is drug related, but the side effects of drugs are many times worse than the disease. Pfizer was recently fined by the US government for the use of Neuronton for neuropathy. Other electronic devices (infrared) that merely heat the feet have been tried unseccessfully. The ReBuilderuses a tiny electrical signal that mimmics the normal nerve signal to wake up dormant nerves that were temporarily restricted due to temporary bouts of oxigen deprivation. The patient uses the system in the privacy of his own home.

David B. Phillips, Ph.D. the inventor of the ReBuilder System for Neuropathy says "We studied all the common denominators that triggered neuropathy and found that each one related to oxygen deprevation. We designed our system to treat that and the results have been amazing." Dr. Phillips won the prestigious Inventor of the Year Award in 1987 for inventing the infrared ear thermometer that is used all over the world today. He develooped the ReBuilder System for his father who developed nbeuropathy.

Patients have reported success in reducing the pain and numbness of peripheral neuropathy, restless leg syndrome, MS, Post
Polio Syndrome, lower back and sciatic nerve pain. Many cases of neuropathy are caused by chemotherapy, lyme's disease, prescription medicianes like Statins and high blood pressure medicines, and environmental toxins. The ReBuilder System has no side effects and is simple to use.

The ReBuilder is FDA approved, Medicare approved, and is certified by the American Association of Emerging Technologies to comply with the guidelines proffered by the American Medical Association for clinically reliable medical equipment.

At a retail cost of $399, the ReBuilder is the preferred treatment of choice. Painless and comfortable, the majority of patients studied reported that over 90% of their symptoms Were cured in less than three comfortable 30 minute treatments.

33% of the patients studied were treated with the Anodyne system and 33% with the ReVitadyne therapies that use infrared lights to merely heat the feet. In a recent edition of Diabetes Care the official journal for the American Diabetes Association, it was reporeted that these infrared light systems were ineffective in increasing sensitivity in the feet of people with diabetic peripheral neuropathy.

Rebuilder proved vastly superior to both modalites and compared to their cost of $2,900, the ReBuilder is an effective treatment system.

ReBuilder Medical Inc. is looking for venture capital to fund the development of an electronic system to detect allergies electronically. the company claims it has the technology to send the patient home with a small battery operated device that will record the patient's response when he merely touches a suspected allergen. In this way a patient can touch things like pets, mates perfunes and medicines etc that t=a physician would not normally have samples of in his office. The test is non invasive and perfect for children.

The company is negotiating for the inclusion of the ReBuilder System for Neuropathy into 750 neurologist's private practices in 2006. Currently Nova Care, Cleaveland Clinic, and the VA offer the ReBuilder.

The company sells the ReBuilder System directly to the patient via the internet. More information is available at http://www.rebuildermedical.com or Toll Free 1-866-725-2202.

Her agony had a name: Lyme disease

2006-01-08T15:02:00.000-06:00

The Free Lance-Star - Fredericksburg,VA,USA
By BETSY CRUMB

In the early fall of 1999, a small deer tick feasted on Frances Bishopp's upper thigh. Writing it off as nothing more than a spider bite, Bishopp didn't get alarmed by the red bull's-eye rash that developed.

But over the next two years, the 62-year-old Fredericksburg resident experienced much more than just a rash.

"I began to develop Lyme [disease] symptoms, though at the time I didn't know that's what they were," Bishopp said. "First, my eyes were glued shut with conjunctivitis; I thought it was allergies. Then I became very, very tired, to the point of fatigue; I thought it was my job."

Next came chronic lower back pain. And when Bishopp started putting in 17-hour days commuting to Washington by train, she began to experience dizziness.

She said she felt like she was "bouncing off the walls when I walked; it was terrible vertigo."

Her weekends meant time in bed, and eventually she had to leave her job.

No one seemed to understand.

"She's such a high energy person," said one of her two daughters, Cameron Bishopp. "To see her feeling so sick that she couldn't get out of bed was such an amazing thing for her to go through."

Two years, six diagnoses, and an array of doctors later, Bishopp was finally diagnosed with Lyme disease.

"I went to every doctor in this town, I swear," Bishopp said. "I went to a [general practitioner], a neurologist, allergists, orthopods. I had a [CT] scan. I was diagnosed with epilepsy, fibromyalgia, generalized anxiety disorder, extreme fatigue. I was crazy because I couldn't get well. I thought I had lost my mind."

After six weeks of visiting a holistic doctor, the results of her Lyme disease test came back positive.

In September of 2002, Bishopp began antibiotics treatment. But the treatment didn't cure her. Her weekends in bed turned into weeks. And for two years after the diagnosis, Bishopp said she left her bed only to go to the emergency room or for her treatment.

Her search for a cure sent her to specialists in North Carolina, where she was treated with different antibiotics for five months.

Now, more than five years after her encounter with the tick, Bishopp is much better, but still recovering.

Her trip to the North Carolina specialist, she said, "was the beginning of my education of my horrible disease."

"The frightening thing about it is so many people don't know they have it," Bishopp said.
'A hideous disease'

Lyme disease was first discovered in Lyme, Conn., in 1981 after a group of children were all diagnosed with rheumatoid arthritis. Thinking this was an odd diagnosis for children, Dr. Willy Burgdorfer began to investigate.

He discovered the children were actually suffering from a spirochete bacteria, infested in them by black-legged ticks. The disease became known as Lyme.

Lyme disease is usually characterized by a bull's-eye rash, such as the one Bishopp had. It's known as the erythema migrans, and along with it, sufferers also often experience flulike symptoms at first.

The rash appears as the body's way of attacking the foreign bacteria. But when the rash disappears, it may not mean the disease is gone.

"Lyme disease is a hideous disease that can affect any organ in your body," said Lucy Barnes, an employee of Lyme Disease Education and Support Diseases of Maryland.

The reason Lyme can go undetected and undiagnosed for so long is because the bacteria, undeterred by the rash, can hide inside cells. This can keep the immune system from detecting and attacking the disease.

According to the Centers for Disease Control, 19,804 cases of Lyme disease were reported in 2004. However, for every one case of Lyme disease reported, 10 go missed, the CDC estimates.

The disease can impair the brain, the nervous system and the heart, as well as cause chronic arthritis, hepatitis, and extreme fatigue, according to the National Institute of Allergies and Infectious Diseases.

The Lyme Disease Association notes that if caught early enough, before the bacteria spreads inside the cells, Lyme disease can be treated and people can recover quickly. But if undiagnosed, such as in the case with Bishopp, it can cause lifelong health problems.

Both Bishopp and Barnes recommend that patients who suspect they have been infected by a tick insist on being tested and treated immediately.

"Back in the '80s, before people really knew about it much, doctors said it was a virus and no treatment was necessary or available," Barnes said. "They found out later that they were completely wrong."

Unfortunately for Barnes, they found this out too late. She said she was finally diagnosed when she staged a sit-in at her doctor's office, refusing to leave until she was tested for Lyme disease.

Barnes, who is known as Tin Cup in her "After the Bite" chat rooms and other intimate Lyme disease circles, was bitten by a tick when she worked as a park ranger in Virginia state parks. Her bout with the disease has left her legally blind and permanently disabled, she said. Since being treated, she said she has learned to walk again, talk again and get out of bed for the first time in years.

And now Barnes is taking an advocacy role, working to educate doctors and victims of the disease. She met Bishopp a few years ago, when Bishopp went online looking for answers.

"She was pretty much a basketcase when she got online. Most people are because they are so desperate for answers," Barnes said in a phone interview.

Barnes said for people in Bishopp's position, it's important to go back out into the world, but it's very difficult.

"She's got a long road to go still," Barnes said of Bishopp, "but she's starting to function again and she's able to enjoy some life for a change. She has come a long way from where she was. I can hear laughter in her voice, a smile that was never there."
Debate over treatment

Barnes' organization is just one of a number attempting to better unravel the mysteries of Lyme disease.

Because symptoms of Lyme disease are similar to many other diseases, doctors have a hard time diagnosing it. The only identifying characteristic of Lyme disease, the bull's-eye rash, is absent in one-fourth of all patients, making it even more difficult to find.

Lyme disease is also hard to detect because symptoms come and go, and oftentimes doctors and patients do not connect them with one another.

This similarity to other diseases and lack of consistent symptoms has led to much dissension in the medical world.

Dr. Geoffrey Gubb, a physician from Parksley, Va., who has done significant research in the area of Lyme disease, said both patients and doctors are missing diagnoses.

"There is this huge difference of opinion between the people who are treating a lot of Lyme and those who are in the infectious disease societies," Gubb said.

Doctors disagree over how to properly test for the disease, as well as diagnose it.

According to the Serodiagnosis of Lyme Disease, a paper written for the CDC, "The diagnosis of Lyme disease is based principally on clinical manifestations and history of exposure to vector ticks in an area where Lyme disease is endemic."

However, Gubb and some other Lyme doctors disagree with this. He said "clinical manifestation" implies physical symptoms, and those are hard to pinpoint, and often inconsistent from one patient to the next.

Aside from the medical quarreling, Gubb said he thinks the biggest problem connected to Lyme disease is the growing population of deer.

"We have to get serious about killing ticks, eradicating them," he said.

While the peak time to contract Lyme disease is in the spring and summer, Barnes noted that it is important to remember that ticks can live in winter weather conditions as well.

"With 80 percent snow cover, ticks can be active," Barnes said. "So hunters especially, and park rangers, are at high risk."
'I couldn't really understand'

Bishopp still has a long way to go on her road to recovery. But her future looks hopeful.

"I was just home for Thanksgiving," said Cameron Bishopp, her daughter. "She was up, and she was a different woman. To be able to see her up and moving around for the first time in years, I can't even tell you how thankful we are."

Bishopp said she is very grateful for her strong support system of family and friends.

She's become determined to help others with Lyme disease avoid the kind of suffering she's experienced. And she's grown more confident in herself.

"I intend to beat it, because I'm a fighter," she said.

To overcome Lyme disease, patients must be very proactive about their health care and aggressively seek the proper diagnosis, Bishopp's daughter Cameron said.

"My mother did so much research and became so educated on it, and that was so important," Cameron Bishopp said. "I always felt bad because I couldn't really understand. I never could fathom how this feels."

Diseases of the Mind

2006-01-02T21:18:00.000-06:00

Newsweek
Olga Skipko has had the good fortune to live most of her adult life in the Polish village of Gruszki, in the heart of the Puszcza Bialowieska, one of Europe’s most beautiful forests and home to wolves, lynxes and the endangered European bison. Unfortunately, the forest is also a breeding ground for disease-carrying ticks. Skipko, 49, thinks she was bitten about 10 years ago, when she began having the classic symptoms of Lyme borreliosis, a tickborne nervous-system disease: headaches and aching joints. She didn’t get treatment until 1998. “I was treated with antibiotics and felt a bit better,” she says.

That was only the beginning of her troubles. A few years later, she began to forget things and her speaking grew labored. It got so bad that she had to quit her job in a nursery forest and check herself in to a psychiatric clinic. “I hope they will help me,” she says. “I promised my children that when I come back home, I will be able to do my favorite crosswords again.” Doctors ran a battery of tests and concluded that her mental problems were the advanced stage of the Lyme disease she had contracted years ago.

Scientists have long known that some diseases can cause behavioral problems. When penicillin was first used to treat syphilis, thousands of cured schizophrenics were released from mental asylums. Now, however, scientists have evidence that infections may play a far bigger role in mental illness than previously thought. They’ve linked cases of obsessive-compulsive disorder, bipolar disorder and schizophrenia to a variety of infectious agents, and they’re investigating autism, Tourette’s and anorexia as well. They’re beginning to suspect that bad bugs may cause a great many other mental disorders, too. “The irony is that people talked about syphilis as the ‘great imitator’,” says University of Louisville biologist Paul Ewald, “but it may be the ‘great illustrator’—a model for understanding the causes of chronic diseases.”

Mental illnesses constitute a large and growing portion of the world’s health problems. According to the World Health Organization, depression is one of the most debilitating of diseases, on a par with paraplegia. Psychiatric illnesses make up more than 10 percent of the world’s “disease burden” (a measure of how debilitating a disease is), and are expected to increase to 15 percent by 2020. Much of this may be the work of viruses, bacteria and parasites. Psychiatrist E. Fuller Torrey, of the Stanley Medical Research Institute in Maryland, has found from studying historical asylum records that hot spots—higher-than-normal incidences—of mental illness can shift, much like infectious-disease outbreaks, which lends credence to the notion that infectious agents play a big role. “Mental disorders are the major chronic recurrent disorders of youth in all developed countries,” says Harvard policy expert Ronald Kessler, who directs the WHO’s mental-health surveys.

Perhaps the most well known disease that’s been linked to mental disorders is Lyme disease, which is caused by the Borrelia burgdorferi germ. First identified in the mid-1970s among children near Lyme, Connecticut, the disease has long been known to cause nervous-system problems and achy joints if left untreated. Now scientists are finding that Lyme disease can also trigger a whole smorgasbord of psychiatric symptoms, including depression. One New York man (we’ll call him Joe) found out firsthand how debilitating the disease can be. When he began having bouts of major depression back in 1992, he had forgotten all about the tick bite he had gotten four years earlier. He spent two years in a blur of antipsychotic drugs, mental institutions, jails and suicide attempts. On a hunch, a doctor at a psychiatric hospital in New Jersey had Joe tested for Lyme disease. After an intensive course of antibiotics, Joe’s improvement was dramatic and immediate. “I started to have this fog lift,” he recalls. Still, he will probably have to be on psychotropic drugs for the rest of his life.

Some psychiatrists fret that there may be thousands of people suffering from Lyme-induced depression without knowing why. Not only is Lyme disease tricky to diagnose—not everybody gets the circular rash, and lab tests still aren’t wholly reliable—it can take a decade or more for mental disorders to set in. The U.S. Centers for Disease Control says that nine out of 10 cases of Lyme diseases remain unreported. There are 15 species of borellias—making them the most common tickborne disease-producing bacteria in the world.

For its part, the parasite Toxoplasma gondii, which can be found in undercooked meat and cat feces, can lead to full-blown psychotic episodes. Some studies suggest that the parasite stimulates the production of a chemical similar to LSD, producing hallucinations and psychosis. Even when the parasite lies dormant in muscle and brain tissue, it can affect attention span and reaction time in otherwise healthy people. Researchers at Charles University in Prague have discovered that people who test positive have slightly slower-than-average reaction times and—possibly as a result—are almost three times as likely to have car accidents. That’s a disturbing prospect, considering that the disease is so widespread: billions of people are thought to be infected.

Even a simple sore throat can lead to psychiatric problems. Few children avoid coming down with a streptococcus infection, also known as strep. Scientists now think that one in 1,000 strep sufferers also develops abrupt-onset obsessive-compulsive disorder (OCD) in a matter of weeks. Strep bacteria trigger OCD by igniting an overzealous response from the immune system, which attacks certain types of brain cells, causing inflammation. Symptoms generally die down after a few months but can flare up again, especially if there’s another bout of strep, says Susan Swedo, a childhood-disease expert at the National Institutes of Health. The most effective treatment, still experimental, is to filter out the misbehaving antibodies from the blood. Best is to treat strep early on.

The specter of a depression germ or contagious obsessive-compulsive disorder is unnerving, but it also opens up many more treatment options—antibiotics, vaccines, checking for ticks. Geneticists believe that diseases may trigger the onset of inherited mental illnesses by activating key genes. Avoiding and treating infection may be just as important as the genes you inherit, and a whole lot easier to do something about.

'I wanted to talk about dying'

2005-12-30T12:00:00.000-06:00

Osseo-Maple Grove Press
Last February, Maple Grove resident Sue Nelson felt she had hit rock bottom.

She was in constant pain that worsened daily and had been to every doctor and specialist she thought was possible, incurring above $300,000 in medical expenses.

"I laid in bed thinking 'this is it'. I couldn't do anything. I couldn't walk, sleep or function in daily life. There were no more doctors. No more tests. I wanted to talk about dying. I thought that is where the pain would lead me," Nelson said.

After all the doctors and multitude of tests, Nelson was left with no diagnosis and a life of consent pain.

"I wanted to talk about dying. I wanted to make peace with myself and make preparations. My mom was the first one willing to talk about my wishes and it was like admitting I was going to die," said Nelson. "I prayed I would die quickly or receive an answer as to why I was so sick. During our conversation, out of the blue, my mom mentioned Lyme disease."

Little would Nelson realize, the conversation about the possible end of her life would lead her to the discovery that would allow her to live her life again.

Nelson was diagnosed with Lyme and Bartonella disease in March 2005. The diagnosis and treatment, she explained with a smile, is letting her live her life again.

Although Nelson cannot determine the date she contracted the diseases, she started developing symptoms in August 2004. She did not experience the classic "bulls eye rash" associated with Lyme disease, which may have led to an earlier diagnosis. Symptoms began in the form of the feeling of pins and needles in her feet. "It was unusual, but nothing other than a minor annoyance," said Nelson. "I knew something was wrong, but it wasn't anything I felt I should see a doctor about."

In November 2004, existing symptoms had worsened, spreading through her body and additional symptoms appeared. Nelson decided it was time to visit a doctor when she could no longer sleep at night due to a resting heartbeat of 90-120 beats per minute. According to the American Heart Association, the average individual has a resting heart rate of 60 to 80 beats per minute. She was placed on high blood pressure medication, but symptoms continued to worsen and new symptoms continued to appear.

"I started having a consent buzzing feeling in my body," explained Nelson. "Eventually, I had fainting episodes, mini seizures and convulsions."

In addition to a general practitioner, Nelson visited a stream of specialists ranging from cardiologists to infectious disease specialists and had a multitude of tests performed. Nelson indicated that a test was completed for Lyme disease, but it had provided a false negative.

During one of her many clinic visits, Nelson was advised her problems stemmed from depression due to her age and circumstances.

"I was insulted, but I went along with the antidepressants with the hopes it would cure me. Everything continued to get worse," said Nelson. "I was so scared. By the time I had scheduled the multiple appointments and tests, I was numb up my left foot to my ankle. My right foot and right hand were numb along with the right side of my face. The usual sensations I had felt with my hand were gone. If I tried to pet the dog, I couldn't feel anything."

According to the Lyme Disease Foundation, Lyme disease symptoms can often imitate other diseases and can be misdiagnosed. Some individuals do not notice the early indicators of the disease, such as flu-like feelings of headache, stiff neck, fever, muscle aches, fatigue and a possible rash from the bite. Once early indicators of the infection disappear, the disease can disseminate to other organs. The LDF indicates Lyme disease can adversely affect many portions of the body, such as the brain, eyes, skin, heart, joints, liver, lungs, muscles, digestive system and spleen and can affect pregnancy.

As time progressed, Nelson made repeated visits to the emergency room. Her ability to walk was gone. She no longer could complete simple, daily functions such as changing her clothes, bathing or brushing her teeth. Husband, Mike, and daughter, Madelyn, assumed the role as her caregiver. Since she is self-employed, she was did not receive disability benefits and was unable to continue working.

Then Nelson found her answer.

As she discussed her illness and what appeared to be a fatal outcome with her mother on the cold winter day, her mother mentioned Lyme disease and its symptoms. The discussion lead to research on the Internet and the shocking discovery that a majority of the symptoms Nelson was experiencing were also found in Lyme disease patients.

"I couldn't find any Lyme disease doctors in Minnesota or Wisconsin to confirm what I felt was wrong with me," explained Nelson. A specialist was located in Missouri and Nelson, accompanied by her husband, set an appointment.

"At that point, I had to ride in a wheelchair and be carried by Mike. I could barely handle the plane ride due to the pain," said Nelson.

Once at the Missouri clinic, a Western Blot test was done and sent to the Center for Disease Control lab and a Lyme lab, IgeneX Inc., in Texas. Nelson had been advised that it was the most clinically accepted test available. The test came back positive and Nelson began antibiotic treatment immediately. Her doctor also diagnosed her with Bartonella based on clinical observation, which involved a review of pictures and Nelson's recounting of an episode of being bit by sand flies in March 2004 while vacationing in the Caribbean.

Nine months after the diagnosis of Lyme and Bartonella, Nelson continues to improve. She has resumed her business and continues to strive toward a complete recovery while dealing with lingering systems such as cold hands and feet, ringing in the ears and tiring more easily.

Although she is significantly improved, Nelson still requires ongoing medical treatment.

"I need to take several types of antibiotics to ensure that I totally wipe out all forms of the Lyme bacteria in my system. I also take a lot of supplements aimed at fighting Lyme disease," said Nelson.

According to Nelson, she also took an antibiotic called Rifampin that was used specifically to treat Bartonella. "How one responds to an antibiotic is also an excellent indicator of which type of diseases one has," said Nelson.

Along with the ongoing antibiotic treatment, she continues to have a phone consultation with her Lyme doctor every four to six months and yearly visits. She also continues to have regular lab work done at a local clinic, which is faxed to the Missouri physician, to ensure there are no negative side effects from the long-term antibiotic usage.

Upon looking back, Nelson feels that the diseases have changed her life.

"Mike, Madelyn and my mom came through for me and they proved to be my saviors. I was also very surprised at other family members and friends who were there for me and so wonderful. I now personally have much more awareness of others around me who have special needs," said Nelson. "I feel less concerned about the day-to-day stuff and know that it will all work out. I try to remember on a daily basis how far I have come and how lucky I am to be walking around and just doing the small stuff."

A Winning Hand

2005-12-27T21:45:00.000-06:00

Medical College of Georgia
A decade and a half-ago, Tim Simpson was on top of the professional golf world. The Atlanta-based Simpson was a champion golfer with four PGA Tour victories who had twice finished in the top 10 on the money list and who had led the PGA tour in top 10 finishes in 1983 and 1990.

But in 1991, that life ended...

While on a hunting trip, Mr. Simpson contracted Lyme disease, but that was only the beginning. The previously strong and healthy Simpson found himself at the mercy of lingering illness, muscle joint stiffness and, worst of all, a tremor that developed in his left hand. To some, it would be considered just a flutter, but for a man who made his living from precise putts and perfect drives, a man who was considered one of the greatest ball strikers in PGA Tour history, the flutter effectively derailed his career.

“I struggled, trying to continue and fight back, taking medications that helped the tremor but left me groggy. The fact that I had no control over my essential tremor and its negative effect on my game nearly drove me crazy. But when I couldn’t hit a routine chip shot, at that point, I decided to retire from competition,” says Mr. Simpson. Ironically, the tremor usually occurred only while he was playing golf or was stressed or tired.

Still, Mr. Simpson never lost faith that someday, someone would be able to help him return to the game he loved. “A day didn’t go by that I didn’t miss it,” says Mr. Simpson. “My goal has always been to try to come back when I was 50 to play in the Champions Tour. One day, somehow, that was my goal.”

That day came when he met Dr. Kapil Sethi, a neurologist who was recommended to him by a friend. A golfer himself, Dr. Sethi understood Mr. Simpson’s urgent need to return to the game. And as director of the MCG Movement Disorders Program, Dr. Sethi understood the tremor that was preventing Mr. Simpson from playing golf.

“When we examined Mr. Simpson, we thought we could help him through a relatively new procedure called deep brain stimulation,” said Dr. Sethi.

DBS is a surgical treatment used to help control tremor, rigidity, slowness of movement and equilibrium problems associated with movement disorders. During surgery, electrodes are implanted into hyperactive areas of the brain that cause tremor. Wires from the electrodes are then tunneled under the skin of the neck down into a surgically fashioned pocket directly under the collarbone. The wiring is attached to a pulse generator, which is programmed to send targeted stimulation to the brain to help control symptoms.

Dr. Sethi referred Mr. Simpson to Dr. Joseph Smith, a neurosurgeon with the MCG Neuroscience Center, who examined Mr. Simpson and discussed the risks, goals and limitations of surgery. But not before the patient did his own homework on Dr. Smith. “I was told repeatedly by other neurosurgeons that he was the best of the best at DBS surgery,” Mr. Simpson says.

Ultimately, he decided to undergo the procedure. “It was a dream come true,” he says. “They gave me back the greatest gift of all, the gift of hope. Hope that I could be normal again and let my talent shine.”

Tim Simpson holds golf club during deep brain stimulation.With his wife, Leigh Anne, by his side, Mr. Simpson arrived at MCG Health System for his surgery last March. He was met by physician assistant Patrick Jenkins and Dr. Smith. After Dr. Smith reviewed Simpson’s MRI on the computer planning work station to determine exactly where the electrode should be placed, Mr. Simpson was wheeled to the operating room.

Inside the OR, a hush fell as the team began to place a 14-millimeter bur hole in the patient’s skull. Upstairs in the day surgery waiting area, Mr. Simpson’s wife and parents waited, tense but optimistic the surgery would go well.

About an hour into the procedure, Dr. Smith began the careful work of placing recording-stimulating microelectrodes into Mr. Simpson’s brain to verify the proper location of the target area as seen on the MRI scan. To ensure correct placement of these electrodes and the final DBS electrode, patients remain semi-conscious during surgery. This allows the neurosurgeon to bring out the tremor on command, and then check how the tremor is controlled when the stimulation is turned on. Mr. Simpson groggily said hello to Dr. Smith and Mr. Jenkins and asked how things were going.

“Tim, let’s see if we can get that tremor going,” said Dr. Smith. Mr. Simpson had brought one of his own golf clubs, which was now placed in his hand. He held it up. Nothing. The team waited. “During surgery, we try to use triggers selected by the patient to help bring out the tremor,” explains Dr. Smith. “That could include a coffee cup or pen. In Tim’s case, his tremor was mostly caused when holding a golf club, so that’s what we tried first.”

Next they tried a Styrofoam coffee cup. Still nothing. Next, Dr. Smith placed a cane in Mr. Simpson’s hand. Almost immediately, his hand and arm visibly shivered, then vibrated back and forth in a steady tremor. “There it is,” said Dr. Smith. “Let’s turn the stimulator on.”

Stimulation was applied in varying degrees of intensity until, all at once, the tremor stopped. Mr. Simpson recalls feeling electricity transiently go down his arm and his hand suddenly go still.

“Dr. Smith, as well as Patrick, had told me that during DBS surgery, the moment when the stimulator is turned on tends to be emotional for many patients when they realize that they aren’t shaking anymore,” says Mr. Simpson. “What I remember was the tremendous excitement in the operating room when the stimulator was turned on and my tremor stopped dead. My hand was solid as a rock. This was something I hadn’t experienced in years, and it was amazing.”

“Every time we are able to use this treatment to change someone’s quality of life for the better, it is an exciting moment,” says Dr. Smith. “In this case, seeing Tim’s tremor suddenly stop was even more satisfying, knowing that we were providing a chance for him to return to the life and career he loved.”

Tim SimpsonMr. Simpson remained in the 3 West Neuroscience Unit at MCG Medical Center for several days, then went home to Lake Oconee. Unable to resist the draw of the greens, he was back out working on his short game at his home course, the Harbor Club, in just three days.

“It was unbelievable to be able to go back out there, and not experience any tremor at all,” says Mr. Simpson. “I saw it in the hospital and at home, but I had to see it out on the course. When I was practicing out there is when it hit me. The second ball that I pitched from 15 yards went right in the hole, and that is when I started crying. I knew that my prayers had been finally answered.

“Dr. Smith, Dr. Sethi and Patrick have my sincere thanks for their amazing work as well as for their friendships.”

While Mr. Simpson continues to return to the MCG Movement Disorders Clinic for regular checkups and further programming on his device to enhance tremor control, he is 100 percent back to his golf career, busy traveling and competing in tournaments, his eye still on his goal of playing on the Champion’s Tour in 2006.

“Everywhere I go, there are articles written about my surgery and how I am coming back strong. I told Dr. Smith and Dr. Sethi before my surgery that if they could stop me from shaking, I would make them more famous than they already are,” jokes Mr. Simpson. “I plan on fulfilling my end of the bargain. It has been a while since I have won on the PGA Tour, but I assure you, I still know how to win.”

Be on the lookout for Lyme disease

2005-12-24T12:05:00.000-06:00

Maryland Community Newspapers Online
On a November day last year, Patty Belke’s 6-year-old son Jared came back from playing in the autumn leaves.

The family, who lives in Good Hope Estates, often made trips to the nearby Maydale Nature Center in Cloverly, but for Jared, this trip ended differently.

Patty Belke found a tick embedded on Jared’s back. The tiny bloodsucking insect had not yet swollen from feeding, and was roughly the size of a poppy seed. After its removal, the family thought no more of it.

Within two weeks, however, Jared had strange symptoms. His hands and feet felt tingly and painful, and other troubles soon followed.

‘‘[Normally,] we knew our child was very coordinated and highly intelligent,” Patty Belke said. ‘‘Within a couple of months, he had involuntary body movements, he was clearing his throat a lot ... he became oversensitive to light.”

The Belke family didn’t know it, but Jared had Lyme disease. The illness is prevalent in suburban and rural areas, where the deer that carry the diseased ticks can be found. A rash shaped like a bull’s-eye often results from the tick bite, but the rash does not occur in all cases.

The bacteria are sophisticated enough to bypass the immune system, and varied enough to manifest more than 100 symptoms. The disease’s variable nature makes it difficult for doctors to diagnose because it can mimic other illnesses.

‘‘Part of the misconception is if you have it, you’ll definitely get the bull’s-eye rash,” Patty Belke said, adding that her son did not develop the rash. ‘‘My son was tested twice by local doctors — both blood tests came back negative.”

Finally, the family contacted a California-based clinic that specialized in tick-borne diseases, and this led to a successful diagnosis.

Such problems are common for Lyme, according to Dr. Leila Zackrison, a Fairfax, Va., rheumatologist who specializes in identifying Lyme.

‘‘It is a bacterium, but it prefers living inside the cell” of infected tissues, she said. ‘‘It is genetically very sophisticated ... it can change the genes and the proteins at will, so it’s very hard for the immune system to detect it.”

Most people who suffer may not recall being bitten by a tick. Winter infections can be harder to diagnose because the symptoms match many cold-weather illnesses.

‘‘The usual season is June through the fall ... but there are late ones, especially if it’s been not so cold,” she said.

Lyme disease manifests itself by attacking three areas. If it affects the muscular-skeletal system, patients feel joint pains and muscle aches. If it attacks the nervous system, patients can suffer from tics and twitches, as well as paralysis in some cases. This variant also can lead to behavioral symptoms, such as depression, said Dr. Raphael Stricker, president of the International Lyme and Associated Disease Society.

Stricker said a strain of the bacteria has arisen along the East Coast that can target the cardiac system, leading to heart arrhythmia. Other symptoms include joint pains that can disappear and reappear, and also hallucinatory experiences such as hearing music.

The earlier Lyme is diagnosed, the easier the treatment, which consists mostly of antibiotics. More serious or chronic infections can lead to hospital stays and intravenous treatment, but Stricker said even a non-hospitalizing infection can be debilitating.

‘‘You still get chronic symptoms, like inflammation, which can be disabling — people have lost their jobs and livelihoods because of this,” he said.

The best approach is prevention, according to Zackrison. Homeowners should try to limit the number of deer that come into their yard, by putting up fences, for example. Parents should spray themselves and children with repellent, and should check for ticks after going out. Children are more likely to get ticks in their hair, ears, neck and armpits, while taller adults are more likely to get bites on their legs or groin. ‘‘If you’re on a property, make sure you clear the hedges, and don’t let underbrush or leaves accumulate,” she said.

If you do get a tick on you, it does not mean you automatically have Lyme disease, according to Marilyn Piety, manager of special projects of the Montgomery County Department of Health and Human Services. In her work with the communicable diseases program, Piety has learned that tick bites often take days to transfer the bacteria to victims.

‘‘The tick has to be on for a while — at least 48 hours — to give you Lyme disease,” she said. Further complicating the matter, adult ticks are not the only type that can transmit the disease. Younger ticks, known as nymphs, are equally to blame and much harder to see — sometimes as small as 2 mm across, Piety said.

For Montgomery County, which is less rural, the number of Lyme disease cases is relatively low compared to other Maryland counties, and Lyme cases have decreased each year since 2000.

In 2004, the Maryland Department of Health and Mental Hygiene’s Epidemiology and Disease Control Program reported 38 cases for the county, compared to 117 in Frederick County and 63 in Prince George’s. In 2003, Montgomery County reported 49 cases.

Jared Belke’s parents are thankful that his school notified them about his behavior changes. They found a specialist in Connecticut to treat him.

A year later, Jared’s symptoms are much milder, and he is taking antibiotics. Patty Belke said the medical costs have ranged from $10 to $100 per month, but that she had heard of acute cases costing up to $1,000 monthly.

The Belkes now use bug repellent and check themselves for ticks after each excursion. Jared still loves to play in the leaves, but he’s more careful, going in only up to his knees.

‘‘Every once in a while, he’d say, ‘I don’t like ticks — why do there have to be ticks?’ ” Patty Belke said. ‘‘But he takes the medicine and does what he has to do and he’s pretty positive through the whole thing.”

Indirect evidence of Lyme disease found in Okanagan

2005-12-20T22:45:00.000-06:00

The Vancouver Sun
The Interior Health Authority says it has found the first indirect evidence of Lyme disease in the Okanagan.

"We have been concerned it might be present in the Okanagan at very low levels and this recent information confirms the low risk," Dr. Rob Parker, medical health officer with the authority, said in a news release.

A man on Kelowna's Westside tested positive for Lyme disease in August but doctors don't know if he was infected locally or outside the region.

The B.C. Centre for Disease Control carried out tick and deer mouse collection in several areas in the Okanagan but only a few actually had Lyme disease.

"The findings are in some ways reassuring,"' said Parker. "Most of the ticks in the Interior are of a type not known to transmit Lyme disease."

Lyme disease can be a serious illness. Routine precautions while hiking are advisable, and early diagnosis is important as effective antibiotic treatment is available.

"This new finding doesn't change the advice we have routinely been giving the general public," said Parker. "People should take measures to prevent tick bites wherever in B.C. they are hiking out of doors during the spring, summer and fall."

The research project by the centre for disease control is one of several in an ongoing effort to determine the areas of the province most at risk for Lyme disease. The results confirm earlier studies, which show that Lyme is present in several areas of the province but that the ticks carrying the disease are still rare.

Each year in B.C., three to five cases of Lyme disease in humans are reported to public health authorities.

To help prevent tick bites, people are advised to wear appropriate clothing when walking or working in areas where ticks may be present, particularly from May to November.

People are also advised to walk on cleared trails; wear a hat, long sleeves and pants and light coloured clothing; tuck pant legs into socks or boots; and use an insect repellent containing DEET on clothing and exposed skin.

Teacher faces health problems with courage

2005-12-11T16:47:00.000-06:00

Portsmouth Herald News - Portsmouth,NH,USA

There are, Stephen Bracciotti says, many people in the world are far worse off than he is. Still, when life socks you between the eyes, as it has him, you are forced to take stock and count blessings when you least expect them.

The well-known York, Maine, musician and guitar teacher has been dealing since early summer with a thus-far undiagnosed ailment that has left him legally blind in one eye and with declining vision in the other. Bracciotti, 54, has had spinal taps, CAT scans, intravenous antibiotics, an eye biopsy. He sees neuro-opthamologists, infectious disease specialists, neuro-oncologists.

Self-employed, as is his jeweler wife, Lauren Pollaro, he is facing upward of $100,000 in medical bills not covered by his high-deductible, catastrophic insurance policy that is proving woefully inadequate. He has to increasingly rely on others for simple daily activities.

And yet, he says, this has been one of the most enriching times in his life, and has changed forever how he will view himself in the future.

Bracciotti said his health problems probably began in June with a deer tick bite. Certainly, that’s when he began to track his problems. He had already had Lyme disease in 1997, and was familiar with its symptoms. Within days, he was running a fever and was put on antibiotics. Not long after, he felt intense pain in the back of his eyes. The diagnosis: Lyme meningitis, or swelling of the brain. More intense and intravenous antibiotics followed, and the pain subsided.

In early August, however, he noticed something wrong with his vision - a shimmering obstruction, like an amoeba, he said, on his left eye. A neuro-opthomologist from Massachusetts Eye and Ear Infirmary said his optic nerves were swollen. By the end of the month, his eyesight was rapidly diminishing. And his right eye was beginning to be affected. He was seeing a Lyme specialist in Boston by then, who - after a spinal tap and more intravenous IV - told him he did not think the loss of vision was caused by Lyme.

That’s when, in September, doctors began to suspect optic lymphoma - cancer. In early October, a biopsy was conducted and vitreous fluid from the eye extracted. It was tested - and no cancer was indicated. However, Bracciotti said, the test is right only 30 percent of the time. That’s where matters stand now, as he wonders whether he should have a more invasive operation where a slice of optic nerve is taken.

"My gut tells me it isn’t cancer - because I don’t want it to be," Bracciotti said.

Bracciotti, who has been on the music faculty at Berwick Academy and the Rivertree Center for the Arts in Kennebunk, and has a private studio in York , had to stop working in September, when he could no longer see well enough to teach.

"The hard part is that I pride myself on looking at my students’ technique. I want to be attentive and I can’t," he said.

The most difficult and the most rewarding aspect of his situation, he said, is how vulnerable he now feels. Difficult, because he can’t take care of his wife and child, 6-year-old Adrian, as he once did, working around the house, paying the bills. Difficult because "it’s hard for me to be beholden to others."

"I’m struggling with being overwhelmed. I’m struggling with getting my house in order - literally and figuratively - in case I lose more of my sight."

But it is rewarding, too, to realize how much people care about him.

In late October, local musician Joyce Andersen dedicated her last Sunday night show of the season at Inn on the Blues in York Beach to Bracciotti. She became involved after receiving a call from South Berwick musician and Berwick Academy teacher Chip Harding, who has known Bracciotti for years.

Among those performing that night in addition to Andersen and Harding, were Kevin Farley, Mike Rogers, Joe Rogers, Kent Allyn, Tom Richter and Andersen’s husband, Harvey Reid.

"We know how hard it is to be a musician with expensive and inadequate health insurance," Andersen said. "But we can’t know what it’s like to be going through what Stephen and his family are going through. It makes you want to do something."

The concert raised $2,800, which was funneled into a nonprofit organization started by Harding called Healing Vision. Healing Vision was formed specifically to receive donations from those who want to help out Bracciotti and Pollaro.

"That a couple who is doing everything right, who is working hard to be productive in their fields, to be good parents, to be good citizens can be hanging by a thread like they are, in the wealthiest nation in the world, is pretty pathetic," Harding said.

Bracciotti is overwhelmed by the outpouring of help he has received, from musicians, friends, family, even total strangers.

"I’ve shed more tears in the past three months than I have in my entire life," he said. "I keep thinking how can I possibly deserve this?

"My hope is that when I am whole again, I know I will be helping people in some way," he said. "I’ve always been a compassionate person, but I didn’t take the time. If I can retain enough vision so I am not completely blind, I want to work with people in a similar situation."

In the meantime, he is taking things one day at a time. He practices Chi Kung, a form of Tai Chi, every morning, and meditates every night to relieve the stress.

And he waits.

Lyme disease: The great masquerader

2005-12-11T16:04:00.000-06:00

The Harvard Post
This year, my Labor Day weekend was dedicated to replacing a retaining wall. The original 90-foot structure, built with railroad ties, had eroded over the years, forming a massive jungle of rotting ties, thorny vines, and long grass. Several family members came to help, and I rented a Bobcat. We hauled old ties out of the tangled weeds on Saturday, and were covered with welts, dirt, and bug bites by the end of the day.

Starting the new wall on Sunday, I felt dizzy and weak. My helpers graciously offered to do the manual lifting, while I drove the Bobcat, but I barely had enough energy for that. I finally climbed out of the cab, and collapsed on my front yard. Thus began my descent into the puzzling and painful world of Lyme disease, where I learned firsthand how hard it is to be diagnosed and treated for this dreadful disease.

As I lay dazed in the midday sun, my neighbor, Brad, came over. He talked to the rest of my family, and helped move some ties. Had I been more coherent, I might have heard him say that his wife, Karen, was starting to feel numbness and tingling in her hands and feet. Feeling useless, I eventually just went to bed. It was Monday afternoon, 24 hours later, when I finally got up.

When I went to work on Tuesday, my neck was swollen and sore. I also had a large red patch across my back and chest that looked like sunburn. By Wednesday, my neck hurt so bad I couldn't move my head, and my shoulder ached. My chiropractor said that muscle strain could cause the pain, but he had no explanation for the red patch. A bull's eye rash would have been more recognizable, but Lyme disease doesn't always leave such obvious clues.

During the day, the pain was tolerable, but at night it was horrible. My various aches intensified around bedtime, and got worse when I lay down. I couldn't find a position for my arm that didn't hurt, and I rarely got more than three hours of sleep.

Then, for no apparent reason, my face started drooping on one side. For three days, I progressively lost motion in my mouth, cheek, and right eye. By Monday, two weeks after Labor Day, half my face was completely paralyzed. Talking, eating, and drinking were difficult, and I looked like the Hunchback of Notre Dame. Two contractors were helping me finish the wall, and one said to the other, "I don't like that guy; he doesn't show any emotion." I guess he was half right.

I had Bell's palsy, a paralysis of the face. My neighbor, Karen, who developed a milder version of the same thing, suspected Lyme disease, and convinced me I had it, too. Lyme disease comes from deer ticks, and I probably encountered one in the weeds by my wall. I took a blood test, and requested antibiotics to get a head start on the
disease while waiting for the results. Since I never saw the tick that bit me, and didn't develop a bull's eye rash (known as clinical evidence), my doctor refused to prescribe anything until the tests came back.

Karen had more trouble with her doctors. On the Wednesday after Labor Day, she had heart palpitations, a migrating pain in her leg, back, and arm, and felt constant numbness and tingling throughout the left side of her body. By the end of the week, she had headaches, and her arm was weak and wobbly. Afraid she was having a heart attack or stroke, Karen saw three different doctors that week. One said it was all in her head, another prescribed a tranquilizer, and the last said she should go home and have a beer.

Karen had two Lyme tests, both with negative results, so she requested something more reliable. This time, the test results showed Lyme activity, but not enough to be above the standard guidelines. Her doctor said she didn't have the disease, so Karen found a specialist on the Internet.

This 'Lyme Literate' doctor determined that Karen had the disease based on her symptoms (a clinical diagnosis). The activity seen on her previous test confirmed the diagnosis, so he prescribed an antibiotic. She needs to take the medication until one month after her symptoms go away. No one knows how long it takes to eradicate Lyme, because the bacteria hide from antibiotics and vaccines.

My Lyme test came back positive. I was given four weeks of an antibiotic, and all my symptoms were gone by the end of it. A few days later, though, I started having heart palpitations, tingling in my fingers, and pain in my elbows. Initial Lyme symptoms can diminish, even without treatment, while bacteria penetrate deeper into your system. This is known as Chronic Lyme, which may exhibit completely different symptoms. The clever masquerader can change its disguise to avoid detection.

My doctor wouldn't refill the antibiotic without more testing, so I called Karen's Lyme Literate doctor. He no longer deals with insurance, and charges $425 for the first visit (not counting lab fees). I called three other Lyme specialists, and they don't bother with insurance either. If my problems continue, I may have to raid my kid's piggybank. Just before Thanksgiving, Karen took her fourth Lyme test, and finally tested positive. Now she knows her medication should help, and that she's been right all along.

The number of Lyme cases in this region is astounding. Debbie directs a children's choir at Karen's church, and suffers from Lyme and Bell's palsy. She says that 11 people were stricken in Harvard this year, and learned that 15 doctors at a local facility are treating 10 cases of Lyme each. I met Darcy because she was describing her Bell's palsy at a party. She knows a third grader with the disease, a man on Stow Road who had it three times, and another boy who got it when a tick bit him in the eye. Many of these people, including Debbie and Darcy, had trouble getting diagnosed and treated correctly.

Considering the number of people with Lyme, and the amount of information available, it's puzzling why the medical community seems so unprepared to handle the disease. Maybe the reason is that Lyme isn't fatal or contagious. Or, perhaps, it's because treating the disease isn't lucrative for insurance and pharmaceutical companies. Or, maybe it's the elusive nature of Lyme bacteria. One thing is clear: Until doctors sort this out, people will continue to be ignored or misdiagnosed.

Whenever symptoms don't make sense, or won't improve with treatment, it might be Lyme masquerading as something else. Ignorance is not bliss when it comes to this disease, and help is available through numerous educational and support organizations on-line. As Karen says, "You need to be your own best advocate."

Educator, union leader dies

2005-12-09T11:35:00.000-06:00

THE JOURNAL NEWS - Westchester,NY,USA
Longtime educator Richard T. Mullin, who for 30 years was president of the East Ramapo Teachers Association, died yesterday morning from complications of Lyme disease. He was 80.

"He was tough," said Georgine Hyde, who was an East Ramapo Board of Education member for much of his tenure and negotiated with him over union matters. "He was a very competent guy in his field, and he was a nice guy."

Mullin was born May 18, 1925, in Michigan to Edward and Ethel Bruckel Mullin. He attended schools in New Milford, N.J. After graduating from high school, he entered the Army and was stationed in Italy, where he was a member of the Fifth Army, 88th Infantry Division, the "Blue Devils," during World War II.

As a radioman, he won a Bronze Star for bravery in action. He was also in the Army during the Korean War. He attended Seton Hall University after leaving the military, graduating with a teaching degree in 1958.

He and Audrey Hartye were married May 28, 1955, in St. Peter's Church in Clifton, N.J.

The family moved to Rockland in 1962, into a house Mullin built in Blauvelt and where he lived until his death. He was hired by East Ramapo schools in 1962 as an English teacher and was as teacher and English Department chairman at Ramapo High School until 1995, when he retired.

His daughter said one of his passions was the teachers union.

"The East Ramapo Teachers Association has suffered a great loss with the passing of our former president, Richard T. Mullin," said Irene Bielski, the current president of the East Ramapo Teachers Association. "Mr. Mullin was instrumental in establishing and shaping the teachers association. His dedication to both the teachers and students of the district, throughout his well over 30 years of service, has left a mark on East Ramapo, which cannot be surpassed. He was the ultimate professional and will be missed tremendously."

Kyle Mullin Kitchenman described her father as a man of humor and principle who loved his family and had a special bond with his grandson, Willy, now a student at SUNY Cortland.

Survivors include his wife of Blauvelt; two daughters, Kerry Mullin Beckmann of Blauvelt and Kyle Mullin Kitchenman of Warwick, N.Y.; and two grandchildren. A brother, Edward "Micky" Mullin, died earlier.

Arrangements are under the direction of Moritz Funeral Home in Tappan, where calling hours will be from 7 to 9 p.m. today and from 2 to 4 and 7 to 9 p.m. tomorrow. A Mass of the Christian Burial will celebrated be at 10 a.m. Saturday at St. Catharine's Catholic Church in Blauvelt. A private family burial will be in Greenbush Cemetery.

Innovative Research Will Improve Understanding of Lyme and Other Tick-Borne Diseases

2005-12-07T13:53:00.000-06:00

PRNewswire
The National Research Fund for Tick-Borne Diseases, Inc. (NRFTD) announced today it will fund two innovative pilot studies designed to advance scientific understanding of Lyme disease and other tick-borne illnesses. The studies will focus on the physical structure and genetic makeup of two different tick-borne bacteria, and will yield important information concerning their ability to establish infection and cause disease in human hosts.

"These projects will utilize cutting-edge laboratory techniques to help develop our understanding of two important human pathogens," said Leo J. Shea, III, Ph.D., Chairman of the NRFTD Board of Directors. "The data yielded will be of use to scientists in multiple disciplines associated with tick-borne diseases, and will drive further important laboratory and clinical research related to these organisms."

Nikhat Parveen, Ph.D. (Assistant Professor of Microbiology and Molecular Genetics at the New Jersey Medical School, University of Medicine and Dentistry at New Jersey) will use her award moneys to study an outer surface protein of Borrelia burgdorferi, the bacterium that causes Lyme disease. This protein, known as OspC, is thought to play a key role during early Lyme infection. However, some strains of B. burgdorferi contain a defective OspC gene and fail to cause infection in mammals. By studying the wide variation in OspC expression among different strains of the bacterium, Parveen will attempt to tease out the specific factors that promote its ability to infect and disseminate through human tissues. This work will also have implications for improved diagnostic testing and vaccine development for Lyme disease.

Timothy John Kurtti, Ph.D. (Professor of Entomology at the University of Minnesota) will investigate how the parasite Anaplasma phagocytophilum, which invades certain white blood cells when transmitted to humans, survives the drastic environmental differences between warm-blooded mammals and cold-blooded ticks. Using a new genomic technology called microarray analysis, Kurtti will determine the specific genes that become active depending on whether the bacterium is in tick or human cells. The results of this work will provide crucial supplemental information to the recently completed but unannotated Anaplasma genome, and will advance current understanding of the bacterium's ability to evade the immune response of its human host. Further, it will likely establish microarray analysis as an important new technology for studying other bacterial pathogens transmitted by ticks.

Recognizing the pressing need to understand and cure tick-borne diseases, the NRFTD and its team of scientific advisors developed an expedited funding initiative based on rigorous scientific standards designed to attract the best researchers in the world. In this initial round of funding, the organization received an impressive selection of grant applications from well-respected investigators in the United States, Europe and Australia. With as many as half of all households affected by Lyme in some endemic areas, and with Lyme case reports rising dramatically, the need to understand tick-borne disease has never been greater.

About the National Research Fund for Tick-Borne Diseases, Inc.

The NRFTD is a nonprofit organization devoted to funding scientific research in the rapidly expanding field of tick-borne diseases. It aims to advance scientific understanding of these complicated infections by sponsoring innovative research at premier institutions throughout the world.

The NRFTD was founded in 1999 to address the complex and critical research questions raised by thousands of patients afflicted with emerging tick-borne diseases, including Lyme disease, relapsing fever, anaplasmosis, babesiosis, bartonella and ehrlichiosis. The need for answers has grown markedly as Lyme disease continues to spread throughout the country and as other tick-borne infections have been recognized as public health threats.

For more information about the NRFTD, or to make a tax-deductible donation, please visit http://www.nrftd.org.

Let's Get Mald!

2005-12-07T13:48:00.000-06:00

Global Politician
Three people, who have shared ideas for months, are on a three-way call, discussing various ways they might help fight Lyme disease, the persecution of Lyme literate physicians, and, of course getting better treatment, earlier diagnosis, and the Yale fraud, too. Then, the conversation turns even more serious, suffering children. But, what could they do for children who were suffering with Lyme disease? They had just heard that Dr. Charles Jones, a renowned Lyme literate pediatrician who treats Lyme disease openly, was on the verge of losing his license. Now where would children go? Lightheartedly, a group's name was thrown out -- MALD (Mothers Against Lyme Disease). The conversation soon ended, but the idea was firmly planted. Why wouldn't a group like this work for Lyme disease? Does it sound far fetched? Sue Vogan, author of NCO: No Compassion Observed, doesn't think so.

Named in 1975, "Lyme disease is the most commonly reported and underreported, vector-borne disease in the United States." The information further states, "the Lyme disease infection in the US is caused by a spirochete called Borrelia (B.) burgdorferi. (A spirochete is a bacteria-like organism with a cylinder-like shape surrounded by an outer membrane.)." - A.D.A.M./American Accreditation Healthcare Commission. It is also an under treated disease, so say experts like Joe Burrascano, MD (Lyme Literate Medical Doctor - LLMD) and Lida H. Mattman, PhD (author of Cell Wall Deficient Forms, 3rd Edition).

The Q-RIBb© or Quantitative Rapid Test For Diagnosing Lyme Disease, was developed by Dr. Jo Anne Whitaker, president of The Bowen Research and Training Institute in Palm Harbor Springs, Florida, and her associates. Although accurate, not only for detecting Lyme disease and co-infections, it is not available for diagnostic purposes. Why? Could it be that if this test were made available, more victims could be treated for Lyme disease and co-infections? Is that such a bad thing? I suggest that it could be.

If a specialist, for arthritis as an example, diagnoses a patient with Lyme disease, wouldn't that mean the specialty business suffers? Wouldn't a patient, who insists on a specialist, be looking for yet another specialist? Perhaps they would be searching for a Lyme disease specialist because their current specialist doesn‘t treat Lyme disease? The pharmaceutical companies, who make drugs for arthritis, would certainly suffer because undoubtedly there would be less need for their arthritis specialty drugs, since Lyme disease is treated with antibiotics, among other medications. And the insurance companies, who are paying for the arthritis treatment, surely would suffer because treating arthritic fingers, for example, is obviously less than treating chronic Lyme disease on a monthly basis. According to a Red Orbit News article by Wendy M. Fontaine, dated November 19, 2005, The Low-Cost Remedy Prescription for Help: Indigent Drug Programs, "...93-year-old Ila Peters, a sharp-witted lady who is partially blind and has arthritis in her fingers. ...Normally, her pills would costs $363.00 for a 30-day supply..." Lyme disease, multi-symptomatic and difficult to cure, treatment with antibiotic alone is still less expensive.

Dr. Jo Anne Whitaker’s most common diseases and conditions connected to Lyme disease list is extensive. The inventory includes Alzheimer's Disease, ALS - Lou Gehrig's Disease, Bell's Palsy, Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, Lupus, Multiple Sclerosis, Parkinson's Disease, Syphilis, Scleroderma, and Rheumatoid Arthritis. In addition to these, Dr. Whitaker states, "all rheumatological diseases and many connective tissue diseases may be Lyme-related." Could that be why so many victims are misdiagnosed or missed completely? Is this why the disease is underreported and under treated? Is this the reason that victims often are diagnosed with multiple ailments instead of Lyme disease? Wouldn't the symptoms from these multiple maladies, treated by many drugs, need various specialists, numerous hospital visits and surgeries? Doesn't this all line the pockets of hospitals, surgeons, physicians, pharmaceutical companies - even charity organizations who may prey on the sick for donations? If Lyme disease were the diagnosis, treated simply with antibiotics, would this not cut millions of revenue dollars?

Melissa St. James, her husband, and their children have Lyme disease, but only after being diagnosed first with Multiple Sclerosis, according to Christine Paluf's August 28, 2005 article appearing in The Herald Press. And Kriste, only 14-years-old, knows the Lyme disease medication she is taking by heart, per Bella English's column on June 1, 2005, The Boston Globe. One can only imagine the medical misery these victims went through or the dollar amount spent just to find out that Lyme disease could have been clinically diagnosed on the first visit.

Sue Vogan cannot imagine children having to suffer with the disease she has lived with since being diagnosed in 1997. If she hasn't heard most of the horror stories, she has lived them. Sue's not alone. Everyday, there are thousands who are hearing everything from it's all in your head to your chronic Lyme disease is cured. Sue understands what it is like to watch a child suffer or to lose a child to a disease. Her daughter-in-law, 28-year-old-Kari, succumbed to cancer over three years ago. Sue's granddaughter, Courtney Rose, is motherless and pain from the loss lingers. Kari is still sorely missed. Wouldn't you miss your child, grandchild or another family member if they were gone? What if you could do something about it? Would you?

Sue thought about Candy Lightner, who in 1980, with a group of mothers, got fed up. Mothers Against Drunk Drivers (MADD) was born out of a need to take action. To date, they have over 600 chapters and are making a big impact in their battle against drunk drivers who take lives. Isn't Lyme disease taking innocent lives? Sure it is. There are heartbreaking stories of children everywhere who cannot function because of Lyme disease. Has anyone died because of Lyme disease? You bet they have. Ray Hartmann, Riverfront Times, January 12, 2000, writes a tragic story about Sarah's mother, Makia, who died from Lyme disease, leaving her daughter without a mother; Tom and Karen Forschner, founders of The Lyme Disease Foundation, lost their son, Jamie, to Lyme disease; and the list goes on.

In a December 2005 article written by Marjorie Tietjen, "Lyme Disease and many coexisting infections are beginning to affect everyone...whether directly or indirectly. These infections are intentionally being allowed to spread. Government agencies and universities, Yale being one of the main culprits, are blocking the appropriate care of those diagnosed with chronic Lyme. Curative treatment is also being withheld from those who have been misdiagnosed with other chronic conditions or autoimmune illnesses. The public's attention is being diverted from this already existing pandemic, while the authorities are feverishly promoting the fear of acute exotic flu-like illnesses whose effect on society so far is nil and cannot even be compared to Lyme disease and it's co-infections. The disease complex known as Lyme disease is having a devastating widespread impact on our country and the world."

If it worked for MADD, why not for this debilitating and deadly pandemic infection that is taking lives all over our world? If we can get mothers to join together, get organized to fight for diagnosis, treatment and insurance coverage, it would be a start at saving the children who are suffering from this cruel disease. The government listens to MADD, why not MALD? Do we deserve anything less than appropriate healthcare for our children? Can we stand idly by while doctors are being persecuted for treating our young Lyme disease victims? When, if not now, will we stop allowing our children to suffer and die from Lyme disease?

This is not flu or a common cold -- and it's not going away. Lyme disease is second only to HIV/AIDS; presents with symptoms that only a Lyme Literate Medical Doctor (LLMD) can recognize and treat; and current testing is plagued by inaccuracy (insensitive resulting in false negatives/positives). Grants are awarded, but very little research information has been useful with regards to diagnosing and treating; the government downplays the disease, therefore making the treatment protocols controversial; and even though the Center for Disease Control (CDC) has clearly stated that lab testing is only for statistical purpose, victims have been overlooked because the results from the insensitive testing available has returned a negative result or never tested at all because they do not present with the EM rash.

Physicians take an oath at the start of their medical careers. Only the caring have taken that oath seriously and fewer yet are going one step further by treating Lyme disease - the disease the government, for whatever reason, doesn't want investigated and cured. It's time to stop going after the LLMDs, the heroes who treat against the grain to save lives. At the same time, the government needs to start helping us instead of allowing us to be hurt by underreporting, under treating, and ignorance or obstinacy in the medical community.

The media has covered this disease far and wide. However, the media cannot truly know the pain and agony associated with Lyme disease. Abstracts have come out of NIH and other agencies, but the authors cannot appreciate the victims who have lost everything in search of diagnosis, treatment and insurance payments. There’s even a $20,000.00 reward being offered by the Hartford Lyme disease support group to anyone who can prove without doubt, that the Lyme disease organism, in all its forms, can be totally eradicated within 21-days. I spoke to Randy Sykes, the group’s point of contact. He stated that it’s ridiculous to think that Lyme disease can be cured by the standard protocol currently being used that they just had to offer a reward. To date, no takers. Does it mean that no one can prove this, thereby proving the 21-day "cure" is a farce? Organizations and associations have been formed to further the Lyme disease cause, but the conferences and newsletters haven't been able to make the impact that a group of mothers, like those with MADD, can make.

There is no one that can get more done than a group of mothers. Add in their sick children and you have the strength and determination of an army. I am calling on all mothers to come together to demand better education for our physicians, insist that more reliable testing be made available, earlier clinical diagnosis, long-term treatment, and complete insurance coverage. If Cindy Lightner and her group can do it, so can we! The time is now; the way is clear; and the results, an end to children suffering with Lyme disease.

Phillips: Unite in fight against Lyme disease

2005-12-04T10:36:00.000-06:00

The Cape Codder on townonline.com
A Florida State quarterback is found half-naked and disoriented in downtown Tallahassee. Pop singer Daryl Hall cancels part of his national concert tour. Author Amy Tan is writing a new book about it.

The picture is clear: Lyme disease has hit the front burner.

Lyme disease is a major public health problem and growing crisis. It's the most prevalent bug-borne illness. According to the Centers for Disease Control and Prevention, new cases are reported in about 20,000 people yearly and this number represents a 10-fold underestimate.

Lyme disease is caused by a complex bacterial agent carried and spread by ticks. The Lyme bacteria have the ability to evade immune destruction, entrench themselves deep within tissues and migrate throughout the body with impunity causing a multi-system illness that can be baffling to many physicians.

The result is that one tiny tick bite can cause innumerable symptoms running the gamut from muscle and joint pain to heart disease to neurological and even psychiatric illness. Lyme patients may be misdiagnosed as having other serious diseases such as lupus, multiple sclerosis, rheumatoid arthritis and psychiatric disorders. The take-home message is Lyme disease may be hard to diagnose and difficult, if not impossible, to fully eradicate if not caught early.

Why is that?
First, there is no single reliable diagnostic laboratory test. The common two-tiered blood test cannot be solely relied upon for diagnosis. The initial ELISA screening test can give up to 50 percent false negative results, and just as disheartening, many laboratories interpret the second Western Blot test by highly restrictive CDC criteria that miss many cases.

Better tests are described in the medical literature, but haven't seen the light of day. So some patients seek more sophisticated testing by approved reference laboratories - labs within a single state that get samples from around the country - but which often don't take their insurance companies and frequently pay for their tests out-of-pocket.

Furthermore, a person with Lyme disease may be co-infected with other organisms, and "co-infections" often require different antibiotic therapy compared to Lyme.

Second, there is no universally accepted treatment. During chronic infection, the organism burrows deep into tissues that some antibiotics can reach only marginally. This is but one of many reasons why a two-to-four-week treatment cannot eliminate chronic infection.

The consensus opinion of the International Lyme and Associated Diseases Society is that an individualized treatment approach is necessary based on clinical judgment.

ILADS is a multi-specialty medical society comprised of virtually all sub-specialists who treat Lyme disease, including infectious disease specialists, neurologists, rheumatologists, psychiatrists, endocrinologists and internal medicine physicians. We've published diagnostic and treatment guidelines in peer reviewed infectious disease medical literature, which stand in stark contrast to the guidelines of some infectious disease specialists who reject voluminous medical data documenting persistent infection and co-infection.

What should be done?
We, the clinical doctors who man the frontlines of treatment, extend an olive branch to our colleagues with divergent opinions to work together to develop practical diagnostic and treatment protocols.

We believe it is essential for patients with Lyme disease symptoms to be tested for multiple tick-borne disorders. We know better tests exist and recommend the entire medical community push for them.

We encourage the education of all medical personnel about the array of Lyme disease symptoms and its related infections in order to increase the number of health care providers who can recognize and treat these illnesses.

In the early days of the AIDS epidemic, activists screamed for attention to get medical care. We hope Lyme patients are not forced to follow the same path, but we will not be content until Lyme disease is yesterday's news.

Physician Steven E. Phillips of Wilton, Conn., is president of the International Lyme and Associated Diseases Society.

Review of treatment options for lyme borreliosis.

2005-12-01T16:20:00.000-06:00

Taylor RS, Simpson IN.
Micron Research Ltd, Ely, UK. rod.taylor@micron-research.com

Lyme borreliosis (Lyme disease) is the most common tick-borne bacterial infection and the incidence is increasing in parts of Europe and the USA. Prompt antimicrobial therapy using oral agents such as doxycycline or amoxicillin is successful among more than 90% of patients. Inadequate penetration of oral agents into the CNS may result in the development of overt neuroborreliosis. The parenteral agent ceftriaxone is the drug of choice for severe acute and chronic infections, due to good penetration into CSF, convenient single daily dosage regimen and proven high efficacy in clinical trials involving a wide variety of disseminated infections. Regardless of therapeutic agent, there appears to a small minority of patients (<10%) who do not respond; such cases may be due to long-term persistence of borrelial cysts and to misdiagnoses based solely on seropositivity. Several adjunct therapies are available, including hyperbaric oxygen therapy and immune system supplements, but clinical trials have yet to be conducted.

PMID: 16315580 [PubMed - in process]

Encephalitis

2005-11-30T12:04:00.000-06:00

Yahoo News
Encephalitis literally means an inflammation of the brain, but it usually refers to brain inflammation caused by a virus. It's a rare disease that only occurs in approximately 0.5 per 100,000 individuals - most commonly in children, the elderly, and people with weakened immune systems (i.e., those with HIV/AIDS or cancer).

Although several thousand cases of encephalitis (also called acute viral encephalitis or aseptic encephalitis) are reported to the U.S. Centers for Disease Control and Prevention (CDC) every year, experts suspect that many more may go unreported because the symptoms are so mild.

What Are the Signs and Symptoms?
Symptoms in milder cases of encephalitis usually include:

* fever
* headache
* poor appetite
* loss of energy
* just a general sick feeling

In more severe cases of encephalitis, a person is more likely to experience high fever and any of a number of symptoms that relate to the central nervous system including:

* severe headache
* nausea and vomiting
* stiff neck
* confusion
* disorientation
* personality changes
* convulsions (seizures)
* problems with speech or hearing
* hallucinations
* memory loss
* drowsiness
* coma

It's harder to detect some of these symptoms in infants, but there are still some important signs to look for including:

* vomiting
* a full or bulging soft spot (fontanel)
* crying that doesn't stop or that seems worse when an infant is picked up or handled in some way body stiffness

Because encephalitis can follow or accompany common viral illnesses, there are sometimes characteristic signs and symptoms of these illnesses beforehand. But often, the encephalitis appears without warning.

What Causes It?
Because encephalitis can be caused by many types of germs, the infection can be spread in several different ways.

Of the many different kinds of viruses that can cause encephalitis, one of the most dangerous and the most common cause of encephalitis is the herpes simplex virus (HSV). HSV is the same virus that causes cold sores around the mouth, but when it attacks the brain it may be fatal in as many as half of newborns who become infected and up to 28% of individuals after the newborn period. Fortunately, HSV encephalitis is very rare.

Some forms of encephalitis are transmitted by insects. Lyme disease, which is transmitted by ticks, can lead to encephalitis. Encephalitis that occurs as a complication of Lyme disease or rabies can be spread by ticks and animals, respectively.

Mosquitoes can also transmit the viruses for several types of encephalitis, including West Nile encephalitis, St. Louis encephalitis, and Western Equine encephalitis. Over the last several years in the United States, there's been concern about the spread of
West Nile virus, which is transmitted to humans by mosquitoes that pick up the virus when they bite infected birds.

Milder forms of encephalitis can follow or accompany common childhood illnesses, including measles, mumps, chickenpox, rubella (German measles), and mononucleosis. Viruses like chickenpox spread mostly via the fluids of the nose and throat, usually during a cough or sneeze.

Less commonly, encephalitis can result from a bacterial infection, such as bacterial meningitis, or it may be a complication of other infectious diseases like rabies or syphilis. Certain parasites, like toxoplasmosis, can also cause encephalitis in people with weakened immune systems.

Is It Contagious?
Brain inflammation itself is not contagious, but any of the various viruses that cause encephalitis can be. Of course, just because a child gets a certain virus does not mean that he or she will develop encephalitis. Still, to be safe, children should avoid contact with anyone who has encephalitis.

How Is It Diagnosed?
Doctors use several tests to diagnose encephalitis, including:

* imaging tests, such as computed tomography (CT) scans or magnetic resonance imaging (MRI), to check the brain for swelling, bleeding, or other abnormalities
* electroencephalogram (EEG), which records the electrical signals in the brain, to check for abnormal brain waves
* blood tests to confirm the presence of bacteria or viruses in the blood, and whether a person is producing antibodies (specific proteins that fight infection) in response to a germ
* lumbar puncture, also known as a spinal tap, in which cerebrospinal fluid (the fluid that surrounds the brain and spinal cord) is checked for signs of infection

How Is It Treated?
Some children with very mild encephalitis can be monitored at home, but most will need care in a hospital, usually in an intensive care unit. Doctors will carefully monitor their blood pressure, heart rate, and breathing, as well as their body fluids, to prevent further swelling of the brain.

Because antibiotics aren't effective against viruses, they aren't used to treat encephalitis. However, antiviral drugs can be used to treat some forms of encephalitis, especially the type caused by the herpes simplex virus. Corticosteroids may also be used in some cases to reduce brain swelling. If a child is having seizures, anticonvulsants may also be given.

Over-the-counter medications, like acetaminophen, can be used to treat fever and headaches. Most people with encephalitis make a full recovery. In a small percentage of cases, swelling of the brain can lead to permanent brain damage and lasting complications like learning disabilities, speech problems, memory loss, or lack of muscle control. Speech, physical, or occupational therapy may be necessary in these cases.

Rarely, if the brain damage is severe, encephalitis can lead to death. Infants younger than 1 year and adults older than 55 are at greatest risk of death from encephalitis.

Lyme Disease Cases in the United States Projected Through 2012

2005-11-27T10:00:00.000-06:00

I-Newswire.com
New Study Predicts One-Third Increase in Number of Lyme Disease Cases per Year in the United States over a Ten-Year Period.

Published by the World International Lyme Disease Emergency Rescue Network ( www.WILDERNetwork.org ) a new study predicts the number of Lyme disease cases per year in the United States to grow a whole third from 2002 to 2012. The maximum possible predicted increase is two-thirds more. This means for every three people who have Lyme disease, there is an expected one more with a maximum possibility of two more.

It is important to note that data for this study was collected from the Federal Centers for Disease Control, who says that their published surveillance data may under-represent the actual number of cases in the US by as much as ten fold. This translates to an expected increase of at least 80,000 Lyme disease cases per year and up to a maximum of 160,000 cases per year by the year 2012.

Being the fastest growing vector-borne disease, an accurate estimation of individuals infected with Lyme disease is of major importance. However, there are larger questions regarding the actual number of Lyme disease cases including; how much is Lyme disease going to cost society in medical expenses and lost wages, and how much will it add to the disability benefits burden for taxpayers?

As children are much more likely to be infected than adults, the escalated incidence of pain and suffering of children and families may have a potentially disabling impact on America’s present and future workforce. Certainly, knowledge of the future magnitude of this disease will assist in better planning and implementation of infrastructure of our medical system for more efficient management of this disease.

Lyme disease is a bacterial infection transmitted by a tick bite; it is the most common tick-borne disease and the most rapidly emerging of all vector-borne diseases. Lyme disease can invade multiple systems in the human body, giving rise to a wide variation of symptoms and disabilities.

Paralysed by a tick bite

2005-11-25T09:30:00.000-06:00

BBC News - UK
For archery champion Mel Clarke it appeared to be a case of just holding her nerve to achieve her goal.

When she arrived at the World Archery Championships in America in 2003, she was ranked second nationally at the sport and was one of the competition favourites.

Yet soon after the tournament began, the 23-year-old from Taverham, Norfolk, was no longer involved in a battle to win a medal - she was fighting for her life.

She explains: "One moment I was firing arrows really well... then within about 20 minutes I was unconscious."

Doctors feared she only had 24 hours to live as she lay connected to a life support machine, unable to breathe by herself.

Mel, who had prided herself on her physical and mental fitness, was now close to death.

And the trigger for this catastrophic turn of events? A bite from a tick.

Doctors believe the tiny insect had infected Mel with Lyme Disease, a potentially fatal bug which can also lead to arthritis, heart and nerve problems.

The disease is caused by a bacterium which is transmitted to humans by ticks that live on some animals.

But, with a show of determination and bravery honed in top-level competition, Mel has overcome the odds - and won a gold medal in the World Disabled Archery Championships in Italy this year.

In 2003, she had travelled to Poland, France and Turkey for archery championships.

But while on tour in New York that July, Mel said she quickly went from firing arrows to losing consciousness.

Mel recalls: "I suddenly got a pain in my chest and my right side, my heart started beating quickly.

"My coach pulled me out of the sun because it was really hot and that's all I can remember until I woke up in hospital a couple of weeks later."

Mel was unconscious in hospital for about two weeks. She awoke to find she could not do anything for herself.

"I was shocked that I was there... I was on a ventilator, I couldn't breathe for myself and I was being tube fed.

"It was so unexpected... I was well beforehand.

"They (doctors) said I'd never fire another arrow, I was really gutted because I'd gone out there shooting really really well."

But Mel, who took up archery when she was 16, vowed that she would find a way to fight back.

When it was time for Mel to return home, she was told by doctors that she had Lyme Disease.

And while she won her fight to survive, the infection has exacted a terrible price.

The disease has left Mel paralysed from the waist down and blind in one eye.

The disabilities come on top of an earlier arthritic condition called reflex sympathetic dystrophy, which has meant Mel used a wheelchair and crutches since she was 11.

Training for Beijing

When Mel felt well enough, she set herself a new challenge, to compete in the World Disabled Archery Championships in 2005.

But the terrifying memory of that fateful day in 2003 when she was taken ill at her last world championship still haunted her.

In September, she flew the flag for the British team and won a gold medal.

"It's been a two-year battle but I think it's made me stronger. Of course there are days when nothing seems to go right, but everyone has those don't they?" she said.

Mel holds 10 national able-bodied records and six International Paralympic World records.

She is now training for the Beijing Paralympics in 2008.

Life of helping others cut short

2005-11-25T09:27:00.000-06:00

Daily Herald
Carole Reese answered her phone late Saturday night. A stranger on the line said her daughter Amanda was in a Florida hospital and that she and her husband, Jim, should come.

Right away.

"At that exact moment I knew," Carole said. "A chill went through my entire body."

By the time Carole and Jim arrived in Florida early Sunday, Amanda, 25, was unable to talk and was hooked up to more machines than the couple could count. Later that day, Amanda died.

"She knew I was there," said Carole, tearing up. "I could tell she wanted me to fix her hair, so I did. She knew I was there. She looked right at me."

The week before she died, Amanda was near Orlando, starting a second volunteering stint with AmeriCorps. She was leading a team of 10 other AmeriCorps volunteers cleaning the Nature Conservancy in Kissimmee, Fla.

Neither her parents nor AmeriCorps officials know yet why Amanda died. An autopsy was performed Tuesday, but getting results could take weeks.

"She was such a healthy person," Jim said. "Then she just shut down."

Reese graduated from Rolling Meadows High School and Illinois State University. She was the only child of the Arlington Heights family.

Amanda and her team arrived in Florida last week. On Saturday, the group wrapped up a day of shopping and grabbed a bite to eat at a fast-food restaurant, Carole said.

A short time later, Amanda broke out in hives and experienced hot flashes. Her team members immediately took her to the hospital.

By the time Carole and Jim arrived early Sunday, Amanda's throat closed up and an X-ray showed she had an enlarged heart, Carole said.

"She declined too quickly," she said. "Everything shut down. Even the doctors don't know what could cause a young person's body to shut down so quickly."

Jim slowly shook his head from side to side Tuesday as he talked about his daughter's death.

"We don't know if it was a virus or something she was allergic to or what," he said.

Amanda had no serious health problems but caught Lyme disease as a child, Carole said.

"I'm thinking it might have been a compilation of things," Carole said.

Before coming to Florida, Amanda volunteered near Biloxi, Miss., helping hurricane victims who still were in temporary shelters but needed to be relocated to trailers supplied by the Federal Emergency Management Agency.

Her work in Mississippi was nothing new for Amanda. Helping people was something she just always believed in, Jim said.

"She was a great girl," he said. "She lived her life for other people."

"Everyone who got to know her loved her," Carole added.

Dave Ponce is another Arlington Heights native who volunteers with AmeriCorps. The two became close friends while living in shelters and working 16-hour days in Mississippi, Ponce said.

"We were buddies," Ponce said. "It was an intense situation and hard sometimes because so many people needed so much help. But Amanda kept things light-hearted. She kept things in perspective."

AmeriCorps members must be between 18 and 24 years old and complete at least 1,700 hours of service during the 10-month commitment. In exchange, they receive about $4,700 to help pay for college.

Amanda was going to use that money to attend graduate school and eventually work with children, Carole said.

"Who knows what she would've been," she said.

Colleen Sullivan was Reese's roommate and sorority sister at Illinois State University.

"Amanda was just so much fun. Everyone loved her," she said. "I remember we went kayaking in Chicago. It was so much fun."

Sullivan took a train from Chicago to visit Amanda's parents Tuesday and is planning a wedding that won't be the same without Amanda, she said.

"She was going to be one of my bridesmaids," Sullivan said.

Services for Amanda Reese will be Saturday at Glueckert Funeral Home, 1520 N. Arlington Heights Road. Exact times are pending.

Serving: Cause of death likely won't be known for weeks

Lyme disease: scratching the surface

2005-11-21T17:55:00.000-06:00

Steven E Phillips, Nick S Harris, Richard Horowitz, Lorraine Johnson and Raphael B Stricker

The excellent Comment by Ulrike Munderloh and Timothy Kurtti (Sept 17, p 962)1 describes the complex life cycle of Borrelia burgdorferi, the spirochaetal agent of Lyme disease, as it traffics between tick and mammalian hosts. The Comment highlights a growing problem with Lyme disease: while what is known about the basic science of this tick-borne illness becomes more complex, the clinical science remains relatively simplistic and uninformed. This divergence has produced a disconnection between the recognition of B burgdorferi as one of the most invasive and elusive bacteria known to man, and the clinical perception that Lyme disease is “hard to catch and easy to cure”.

The complexity of the Lyme disease spirochaete goes beyond the features described by Munderloh and Kurtti. With more than 1500 gene sequences, B burgdorferi contains at least 132 functioning genes; by comparison, the spirochaetal agent of syphilis, Treponema pallidum, contains only 22 such genes. Furthermore, the Lyme disease spirochaete contains 21 plasmids (nine circular and 12 linear). This is by far the largest number of plasmids found in any known bacterium, and the large number of plasmid genes is thought to provide a rapid response system that allows the spirochaete to cycle efficiently between ticks and mammals. Gene exchange and plasmid transfers among Borrelia strains can also increase the pathogenicity of the organism.

In the mammalian milieu, B burgdorferi uses the host fibrinolytic system to penetrate the blood-brain barrier and gain access to the central nervous system. The Lyme disease spirochaete contains a secretory mechanism for porin, adhesin, and haemolysin proteins, and these secreted products can contribute to the invasive properties of the organism. The spirochaete can enter cells such as fibroblasts, synovial cells, endothelial cells, and macrophages. In these cells, it becomes functionally resistant to treatment, partly due to “camouflage” proteins produced by itself or adsorbed from the cell, and partly due to altered morphology as the spirochaete assumes a non-replicating cyst form. The immune evasion strategy used by B burgdorferi is similar to strategies used by the mycobacterial agents that cause chronic infections such as tuberculosis or leprosy. These organisms also exist as non-replicating cyst forms that can be “resuscitated” by autocrine cytokine-like factors after lying dormant for months. B burgdorferi has been shown to use luxS, an autoinducer gene used by other bacteria, to regulate replication. It is the first time that this autoinducer gene has been identified in a spirochaete. Thus the combination of genetic complexity, intracellular localisation, immune evasion, and autoregulation makes the Lyme disease spirochaete a formidable infectious agent.

By contrast with the complex basic science of B burgdorferi outlined above, a popular clinical notion is that Lyme disease can be cured with 2–4 weeks of antibiotics. Although this might be true of promptly treated acute B burgdorferi infection, chronic infection that allows the spirochaete's complex pathophysiological mechanisms to unfold can result in tenacious tissue invasion that is extremely difficult to eradicate. Understanding the pathophysiological complexity of this organism should help to improve our clinical approach to Lyme disease.

Bug Blamed for Obesity

2005-11-18T18:27:00.000-06:00

WPVI-TV Philadelphia
Overeating, genetics, and lack of exercise usually get the blame. But one doctor says for some people, it all begins with an insect bite.

Pat Keller-Berrett: "I'd put on something like 30 pounds that I could not lose."

Pat Keller-Berrett first noticed the trouble losing weight after a bout with Lyme Disease 8 years ago. It worsened after she got Lyme Disease again.

Pat Keller-Berrett/Oxford, Pennsylvania: "I couldn't lose more than a few pounds, no matter what I did."

By early 2003, she weighed over 240 pounds.

Keller: "I just basically gave up, and said - Ok, I'm going to be a 240-pound woman for the rest of my life."

During her battle with Lyme Disease, Keller went to see Dr. Ritchie Shoemaker, a Maryland physician studying the tick-borne ailment.

Dr. Shoemaker noticed Keller had high levels of leptin, a hormone that regulates how the body stores fat. He suggested an unconventional approach - restricting some foods in her diet, and taking cholestyramine, an old cholesterol-lowering drug.

Keller: "The first week I lost 7 pounds."

Eighteen months later, the pounds are still dropping off.

Keller: "I've gone down something like 5 sizes."

Dr. Shoemaker says he sees a lot of Lyme Disease patients with weight problems.

Dr. Shoemaker: "This is an illness that makes people tired, in pain, and fat."

Dr. Shoemaker believes that when a person is bitten by a tick, the tiny organisms that cause Lyme Disease unleash toxins. In many people, these toxins disrupt the body's ability to handle leptin, which is produced by fat cells. Instead of burning fat, these people store it, adding more and more weight. Dr. Shoemaker says the toxins remain, long after antibiotics wipe out Lyme Disease.

Dr. Shoemaker: "Cholestyramine, a very poorly tolerated, but very old-fashioned cholesterol medication, will bind to Lyme toxin."

He says once the toxins are out of the body, a Lyme patient can lose weight again. Penelope Pattenden says she's shed 20 pounds since trying Dr. Shoemaker's regimen.

Penelope Pattenden/St. Michael's, Maryland: "The weight came off quite rapidly. I was quite surprised."

Shoemaker's eating plan restricts foods high in amylose, a form of sugar. Pat and her husband don't eat wheat, potatoes, or refined sugars, but do eat a lot of fruits, vegetables, and dairy products, like cheese.

Kory: "We've got swiss cheese, jack cheese..."

So what do other physicians think? Dr. Rob Danoff of Frankford Health System says there's no science to support the Lyme toxin theory. He says these patients lose weight because they're cutting out certain sugars and starches. Plus, the drug cholestyramine is notorious for upsetting stomachs.

Dr. Rob Danoff/Frankford Health System: "You really wouldn't feel like eating. Not only that, cholestyramine can block some fat absorption."

Pat says, whatever the reason for her new shape- she's happy to have gone from this to this.

Keller: "I really like the way I'm eating, I like how I'm feeling."

Commentary: The big red fence that isnt

2005-11-18T18:24:00.000-06:00

the-daily-record.com
We had it all planned. The burgundy floral dress and black flats. The tiara for her hair, after it’d been all froo-frooed up in some girly style. She looked so beautiful. I hope it’s not the last time she chooses to accompany her dad to the yearly Father-Daughter dance, but I’m pretty sure that it won’t be. Because our daughter is not your standard 10-year-old kid. She knows what really counts in life. She’s a survivor.

Since I wrote a column last winter about Laura’s diagnosis of Lyme disease, I have been barraged with mail and phone calls about the disease. I wrote the column because we had found a reason for our child’s unbelievable joint pain, her insomnia, her crushing fatigue, her inability to concentrate one day and get her usual “A” the next. Lord knows, we’d gone to countless doctors for almost 4 years before she was eventually diagnosed. Finally the right test was run, at the right lab, and answers were forthcoming.

Although I am skeptical about giving a totally positive report, our girl has come a long way in 9 months on antibiotics. For getting a diagnosis of Late Disseminated Lyme disease means you have a battle ahead, and not an easy one at that. If only the symptoms had been recognized early, several weeks of antibiotics would have ended the ordeal.

With what we’ve gone through, the thing that concerns me most and has spurned me on to attend the Literati for Lyme in New York with the top researchers from Columbia University, and to follow up with writings about Lyme in this paper, are the unbelievable misconceptions about this illness, a disease we hear little about that has in reality grown to epidemic proportions in our country.

For example, most people, including docs who are not literate in Lyme, think it only takes a week or two of antibiotics to cure Lyme disease. If it’s a late diagnosis, a year or two of meds, or maybe IV antibiotics, may be necessary. Another fallacy is that the Elissa test is the right preliminary testing tool. In truth, its results are nearly worthless, according to Brian Fallon, M.D. from Columbia University. Most folks think you have to have a rash to consider a diagnosis of Lyme. The truth is that the majority of Lyme patients never remember having a rash at all. My daughter did have a rash, for six months. I was told it was viral in nature. It was discounted along with her stiff neck, countless strep infections, joint pain, 4 cases of mononucleosis, and a host of other ills.

But what concerns me most after my columns ran are the phone calls I’ve received. There was the man who called about his wife who is so ill she crawls to the table each night. He is a forester who sees ticks on his clothing every day. Or the mother of the teen-age girl with rheumatoid arthritis symptoms who has now surrendered ideas of marriage and motherhood. There was the call from the frenzied mom whose child had a tick embedded in his scalp after playing in the yard. None of their health care providers ever tested for Lyme. Or suggested using broad spectrum antibiotics in the case of the latter.

Although I am not a scholar when it comes to medicine, as I have been told by more than one physician, in the past year I have learned a thing or two about Lyme disease. For starters, is Lyme here in Ohio? You darned bet ya. Did our daughter contract the disease hiking the woods in Wayne County or on one of our hiking vacations? We’ll never know. According to our doctor, Charles Ray Jones, M.D., the top pediatric Lyme specialist in the U.S., his 8,000 patients are from every state. How has Lyme spread from the eastern seaboard to points west? Migratory birds and small wildlife, not to mention deer, of course. In other words, get rid of your bird feeder and don’t encourage wildlife into your yard.

Let’s get real, folks. Highly endemic Pennsylvania reported 250,000 CDC cases of Lyme in the past 10 years. Unless there is a big red fence that somehow prohibits those ticks from being carried only one county away into Ohio, we must face reality.

I guess it all comes down to being informed. And not stopping until we are satisfied that an answer has been found. An answer we know to be true. And then getting down on our knees and begging God to let our child know health again. To go to dances with her daddy, and laugh again. And then begin to believe, with the grace of God, that she can once again be well.

Emerging infectious diseases focus of forum

2005-11-17T20:17:00.000-06:00

bangornews.com
AUGUSTA - Avian flu may be the hot topic in most public health circles these days, but it got little more than passing mention Tuesday at a daylong conference on emerging infectious diseases in Maine.

The event, presented by the Maine Center for Disease Control and Prevention, offered updates on reportable diseases that Maine physicians are more likely to encounter in their work, such as food-borne illnesses, hepatitis, antibiotic-resistant infections and vector-borne diseases such as Lyme disease.

It also provided an opportunity for the state's public health office to demonstrate some of the work it does to ward off widespread illnesses, detect outbreaks and keep track of threats to public health.

The agenda included a review of a September golf tournament at which more than 40 people became acutely ill after partaking of an elegant luncheon buffet. Although it was almost two weeks before the outbreak was reported to the state's Bureau of Public Health, epidemiologists were eventually able to trace the bacteria that caused the diarrheal illness, Shigella flexneri, to the beef skewers served at the buffet. Inspection of the catering facility found numerous food handling violations, though it seemed likely that the beef had been contaminated, probably with human feces, before its arrival at the caterers' kitchen.

Also showcased was a private summer camp in midcoast Maine where a 14-year-old-girl from Japan arrived this past summer with a full-blown case of mumps. As is required, the case was reported to the state. Public health officials found that 95 percent of the camp's 240 vaccination records were incomplete and were faced with the daunting task of tracking down each camper's physician to determine whether she had been immunized against the potentially dangerous disease.

Then campers' parents, many of whom were away on vacations of their own, had to be notified. Within two days, 39 people - five campers and 34 staff - received a mumps vaccine. The Japanese camper spent her three-week Maine vacation in medical isolation.

About 275 Maine physicians and other clinicians participated in the daylong conference at the Augusta Civic Center. Presenters included public health experts from the federal Centers for Disease Control and Prevention in Atlanta and the Lenox Hill Hospital in New York City, as well as from Maine's own public health division.

Just before lunch, participants were treated to a distressingly graphic treatise on noroviruses - notoriously fast-acting food-borne pathogens that have taken all the fun out of many an ocean cruise. "You can tell the people who are seasick from those who have norovirus - people who are seasick make it to the railings," quipped presenter Marc-Alain Widdowson of the CDC.

New York physician Michael Tapper discussed the growing concern over antibiotic-resistant infections that are increasing in incidence and severity. Robert Smith, an infectious diseases specialist at Maine Medical Center in Portland, cautioned practitioners to be on the lookout for more cases of tick-carried Lyme disease, which he said is moving north and inland.

And avian flu? Attendees were given a brief overview of the state's recently released pandemic influenza plan, and some attended an optional question-and-answer session after lunch.

State epidemiologist Kathleen Gensheimer said the possibility of a devastating global outbreak of bird flu is real and extremely serious, but the purpose of Tuesday's gathering was to update Maine physicians and other health care clinicians on diseases they're more likely to encounter on a day-to-day basis.

"We ask the health care community to take the time and trouble to report certain diseases to us; once a year, we give the information back to them," Gensheimer said. "It's hard to pick the specific topics, but we try to focus on diseases of public health significance in Maine."

A Letter from IGeneX Labs CEO, Nick Harris (CA)

2005-11-16T15:07:00.000-06:00

I am pleased to announce that IGeneX, Inc. recently passed two inspections on September 7 and 8, 2005, for its biannual recertification fromthe State of California. A federal inspector also arrived simultaneously, indicating she was present due to the NY Times article August 23 which had made allegations against IGeneX laboratories. The inspection was intense, with a focus on the Western Blots which had been cited in the NY Times article.

The lab has been fully recertified, and the inspectors clearly saw the allegations were without merit.

Despite a volume of letters to the Times after the article by patients, groups, and doctors in support of IGeneX, nothing was printed by the Times.

IGenex thanks allthe Lyme community for your support. Perhaps the Times will relent and print another piece on this issue.

Sincerely,
Nick Harris
CEO, IGeneX Labs
Pao Alto, California

Amy Tan on Lyme

2005-11-15T23:39:00.000-06:00

amytan.net
I have late-stage neuroborreliosis. I have had this disease since 1999.

My case is in many ways typical. Like many, I had little awareness of Lyme disease, for I did not live in what was considered the tick-infested hotbeds on the East Coast. I am a Californian -that’s where I file my taxes- and I live among the hills of San Francisco with its tick-free, concrete sidewalks. For a good long while it did not seem significant that I also have a home in New York, that I weekend in the country, and my main form of exercise is hiking. In addition to trekking in the woodlands of Mendocino, Sonoma, and Santa Cruz counties in California, I have also sojourned to leafy spots in Connecticut and upstate New York. I once loved to sit in the tall grass next to the river, and lean my back against a shady oak tree.

I passed off my early symptoms -a stiff neck, insomnia, a constant headache, and a bad back followed by a frozen shoulder- as the unpleasant aftermath of too much airplane travel. I was often tired and jittery, but that, I reasoned, was the consequence of an active and exciting life. Who was I to complain? I had a wonderful life, a great husband, lovely homes, a successful career. I was rarely sick and went to the doctor only for my annual checkup. Even when I came down with the fever, aches and pains of the "flu" earlier in the summer, I had managed to beat it back without developing any of the respiratory sequelae. What a great immune system I had!

When my feet grew tingly and then numb, I mentioned to my doctor that I had had an unusual rash earlier that year. It had begun with a tiny black dot that I guessed might have been a pinprick-sized blood blister. It grew more rounded as it filled, and then I either scratched it out or it fell out on its own, leaving a tiny pit and a growing red rash, which, curiously, did not itch, but lasted a month. Because that rash seemed so unusual, as did my neuropathy, I wondered aloud whether they were related. My doctor said no.

Like many chronic Lyme disease patients, as my symptoms mounted and a scattering of tests proved positive for an array of seemingly disparate conditions, I was referred to specialist after specialist, until I eventually had consulted ten and had taken countless lab tests. Because one repeated test revealed my blood sugar inexplicably dipped from time to time into the 20s and 30s without symptoms, I underwent a 48-hour fast. An MRI revealed 15 lesions in my frontal and parietal lobes, but my doctors felt that was normal for a person my age; I was 49 at the time. A CAT scan showed an incidentaloma on my adrenal gland, and that was where I hung my hopes, on a tiny benign tumor, which I could excise laparoscopically in hopes of being rid of my enervating symptoms. Instead, after beginning steroids, the bizarre symptoms worsened. Hallucinations began, what I now realize were likely simple partial seizures, the result of lesions on my brain. I saw people walking into my room, two girls jumping rope, numbers spinning on an odometer, a fat poodle hanging from the ceiling. I also had strange episodes in which I behaved strangely but had no recollection of what I had done as reported to me by others. I apparently rang people up at midnight and talked in a wispy voice. I had flung laundry around the living room. My husband said I acted at times as if I were in a trance, eyes wide open but unresponsive to his and a friend’s questions. I now had nightly nightmares and acted them out, punching at lamps or my husband, and once landing on my head in a dive toward my dream assailant.

By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. When I wrote by hand, I reversed letters. When I spoke, I substituted words with like-sounding beginnings. I did not possess any of the skills necessary to write fiction, for I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery. Thus, my novel-in-progress lay abandoned between feeble attempts to resuscitate it. At times, when asked what I was writing, to my horror, I could not remember, and I would struggle over the next hour trying to recall the faintest details. I no longer dared get behind the wheel of a car, because I could not process fast enough when to depress the accelerator and when the brake. When I did venture out on foot, I would sometimes find myself lost in what I knew was a familiar place, my neighborhood of thirty years. Why didn’t that building on the corner look familiar? Why did everything seem as though it were the first time I had been there? I easily became lost in stores, hospitals, hotels, and I would panic, certain I was losing my mind and developing dementia related to early Alzheimer’s. My anxiety was a hundredfold of what was warranted, even in a post 9/11 era. Eventually, I could no longer leave my house alone. In any case, it hurt to walk too far. My muscles were stiff, my knees and hips ached. And I was almost too tired to care anymore.

Let me add here that my doctors were affiliated with major urban hospitals, were tops in their department, well-known, well respected. I liked them. I still do. Not once did they raise the idea that I was a hypochondriac. But they also did not raise the possibility of Lyme disease. Actually, one doctor had considered the possibility that I was infected with a spirochetal bacteria, and he gave me an ELISA test, which was negative -not for Lyme- but for syphilis.

I turned to the Internet, which is where doctors believe patients catch terminal illnesses, that is, whatever disease they see described before them on the terminal. And there I saw that an ELISA was also used to screen for Lyme disease. Further reading led me to see that all my symptoms could easily fall under the multi-systemic umbrella of borreliosis. Further sleuthing gave me the name of a Lyme specialist, someone my other physicians acknowledged was "a good doctor."

My Lyme specialist considered the history of my rash, the summertime flu, the migrating aches and neuropathy, the insomnia and fatigue. He thought 15 lesions in my brain were significant in light of my neurological symptoms. He saw on previous tests that I had some interesting changes in my immune system. He ordered a complete battery of tests from IGeneX, a lab specializing in tick-borne illnesses, to check for not only Lyme disease, but its common co-infections. Two weeks later, I learned I was positive for Lyme on the Western Blot. My doctor told me that the test only confirmed what he already knew.

Let me hasten to add that not all chronic Lyme patients test positive on the Western Blot, at least not at the levels set by doctors who follow CDC surveillance criteria as diagnostic. As this booklet outlines, there is much more to be done before the tests can be considered reliable in every lab across the country. I know this firsthand because after I started antibiotic treatment I took part in a study in which my blood was sent out to five different labs for the ELISA and Western Blot. The results were all over the place -with Lyme-specific bands lighting up in one lab and not the other. There was almost not a single consistency. In addition, I had a negative ELISA test but a positive PCR, that is, I had DNA evidence of borrelia in my blood. And this was nine months after I had started antibiotic treatment.

Like many late-stage neurological Lyme patients, it took a while for symptoms to begin to lift. A day after starting antibiotic treatment, I became feverish and ill with the classic Jarisch-Herxheimer reaction. A month later, the joint and muscle pain eased up somewhat. Two months, and some of the fog finally lifted, and I frantically wrote for long days, fearful that the curtain would come down again. After six months, I had no muscle stiffness or joint pain remaining. Today, I can once again write fiction, speak at conferences, and walk in my neighborhood alone and without anxiety and panic. I’ve been under treatment now for over a year. I consider myself 85% improved from where I was a year ago. I still have what I call memory black holes when I am tired, and I have neuropathy in my feet, which at times becomes too painful for me to walk more than a block. I know that my late diagnosis means I am in this for years, perhaps even for life. But at least I have my mind back.

As a patient, I have joined a club of people with a stigmatized disease that many doctors do not want to treat. While I have been lucky enough to find a doctor who is willing to provide open-ended treatment -and I have the means to pay for it- many of my fellow Lyme patients have gone without appropriate care. As a consequence, they have lost their health, their jobs, their homes, their marriages, and even their lives.

I now know the greatest harm borrelia has caused. It is ignorance. Lyme disease is more prevalent than most people think. It is more difficult to diagnose than most doctors think. It requires more research before we know how it can be adequately treated, and one day, cured.

In the meantime, my advice to friends and family is to be aware and be informed. Realize that Lyme disease has been reported in every state except Montana. The CDC estimates the actual numbers of those infected each year is at least tenfold of what is documented as cases. Some Lyme specialists believe the numbers are even much higher than that.

And if you are bitten by a tick and suspect you have been infected, go see a Lyme-literate physician. Get treated early and adequately. Don’t wait, as I did, and let a treatable disease turn into a chronic one.

SICK MUM SEEKS DIAGNOSIS IN USA

2005-11-15T23:31:00.000-06:00

Western Gazette
A Desperate Ilminster mother hopes specialists in America can diagnose the symptoms she has suffered for a decade. Michelle Rowland, aged 29, of Lower Meadow says a positive result from tests for Lyme disease could help end her chronic fatigue, headaches and heart problems. Her symptoms leave her unable to work and often struggling to get out of bed, making caring for her two children difficult.

She believes she contracted the disease, which is passed to humans from a tick bite, while walking at a park in Leicestershire ten years ago. Tests proved negative, but she was given fresh hope when she read a similar case in a magazine of a sufferer who sent her blood sample to America for analysis and it tested positive.

Mrs Rowland said: "I had a test done in the UK which proved negative and so I didn't think anything more about it.

"It wasn't until I read a magazine article about a lady in the same position as myself who had a negative test. She sent a blood sample to specialists in Lyme disease which came back positive."

The mother-of-two plans to return to Bradgate Park next month to walk across its 340 hectares to raise money for her campaign, a task she admits will be physically challenging.

"I'm quite restricted in what I can do, so that is about all I can manage," she said. "I urgently need to raise cash and can, hopefully, get people to sponsor me.

"I'm really concerned for my two little children and I want to be around to look after them. I'm worried something is going to happen."

Mrs Rowland believes it could cost up to £1,000 to send away her blood sample, which she cannot afford having been forced to quit her job at the Co-op in Ilminster due to her symptoms.

She said the events of ten years ago bore the hallmarks of Lyme disease. "I noticed this thing on my arm like an open sore and it gradually turned into a red ring. About a week later I got up and the first thing I had was a severe dizzy spell and the feeling of a bad hangover."

Mrs Rowland went to work but left early, suffering from dizziness, and went to bed hoping to feel better the next day.

"The next morning I couldn't open my eyes, I was absolutely exhausted."

She now stays at home, caring for sons Nathan, aged four, and Aran, seven months.

"I used to do a lot of sport but all I can manage now is to look after the children. The housework goes out of the window."

HMS Study Predicts Disease

2005-11-14T20:00:00.000-06:00

The Harvard Crimson
Harvard Medical School (HMS) has released a study saying that global warming could cause a significant spread of asthma, infectious diseases, and heat wave deaths over the next several decades. But one professor at the School of Public Health expressed skepticism about some of the study’s findings.

The study, conducted by the Center for Health and the Global Environment at HMS, forecasted that the area suitable for tick habitat will quadruple over the next 80 years as a result of climate change.

The study also warned about the potential spread of West Nile virus, which never appeared in the United States before the summer of 1999, when it led to seven deaths in New York City.

But Professor of Tropical Public Health Andrew Spielman said that “global warming has no role in the proliferation of the West Nile virus and Lyme disease. The Lyme disease hypothesis lacks data and doesn’t make sense.”

Spielman also said that the study’s warning about the spread of malaria “is a bit of a stretch.” The study forecasted that suffering from malaria would increase by more than 100 percent in Ethiopia, South Africa, and Zimbabwe later this century.

A spokeswoman for the center, Kathleen Frith, declined to comment on Spielman’s assertions, except to say that “we completely disagree” and that the relevant supporting data could be found in the study.

Meanwhile, Spielman noted that he had not examined the study in detail and that he based his comments on prior knowledge as well as a brief survey of the study’s findings. He said that his comments should be taken as skepticism—but not as a categorical denial of—the results.

The lead author of the study, Paul R. Epstein, an instructor at HMS, said in a statement that climate change could lead to disasters that would be “comparable” to the devastation of Hurricane Katrina.

Firth emphasized, though, that “Hurricane Katrina was not a result of climate change” and was merely an example of the ripple effects that could potentially occur as a result of an increase in extreme weather.

The authors of the study said their work was unique because it analyzed the impact of climate change over the next decade, while most other research emphasizes longer-term effects.

The study reported that a heat wave this past July produced record high temperatures in several American cities. The study also analyzed the heat wave that scorched Europe in the summer of 2003, finding that if an analogous wave hit New York City in the near future, nearly 3,000 people could die.

The study recommended, among other precautions, neighborhood response plans “to transport isolated persons to facilities with adequate air conditioning,” such as malls and movie theaters.

More generally, the study presented a two-level approach to reduce the risks of climate change. The first level, “direct mitigation,” includes, among other measures, increasing monitoring of extreme weather hazards and distributing bed nets to curb the spread of malaria, Firth said.

“The second level is to foster policies that promote oil independence, renewable resources, and ultimately a reduction in carbon dioxide levels in the atmosphere, which addresses the root of the problem,” she added.

The three-year study was sponsored by insurer Swiss Re and the United Nations Development Programme. The results were released on Nov. 1 at the American Museum of Natural History in New York, and are posted online at www.climatechangefutures.com.

Tick season this year is later, buggier than before

2005-11-14T19:50:00.000-06:00

Dover, New Hampshire
Ticks prone to carrying Lyme disease have made their autumn appearance later than normal this year, and some area doctors are reporting more patients with tick bites.

Dr. Joseph Dulac, a physician at Atlantic Family Practice in Dover, said he typically treats patients with tick bites once a month, at most, during the spring and fall months.

Over the past three weeks, that number has jumped substantially, as at least three patients have come to him with fully engorged ticks attached to them. Another two or three patients have arrived with tick bites.

Officials at the state Health and Human Services Department say they haven't noticed an increase in reported Lyme disease cases, but are still tracking those figures for the season.

Dulac said he's never seen anything like this year's phenomenon.

"I'm not sure if it's all the rain we've had or just a high concentration of people coming in, but it makes me wonder if we're the only ones to see this or if it's affecting the community as a whole," Dulac said.

Black-legged ticks are the primary carriers of Lyme disease. New Hampshire's ticks most commonly are found in the southeast corner of the state.

Alan Eaton, an entomologist with the University of New Hampshire Cooperative Extension, said there hasn't been a noticeable increase in the number of ticks in the region. But he has seen a delay in the resurgence of ticks looking for hosts, like deer, dogs, or people, to feed on this fall.

"Three-host ticks," like the black-legged tick, typically feed on three hosts during their two-year life span.

Eaton said ticks usually travel in the open looking for a feeding host around the third week of September, in addition to their spring feeding time. Most are active until mid-November.

But this fall, the first ticks did not appear until mid-October. Eaton said it was unclear why the ticks are coming out later than usual, but he and other experts said warmer temperatures in September may have delayed their arrival because the ticks need a certain amount of cold before they travel into the open to look for hosts.

Preliminary symptoms of Lyme disease can include fatigue, fever, pain in muscles and joints and sometimes a rash around the bite mark. If left untreated, the rash may disappear and dizziness, irregular heartbeat, arthritis and nervous system disorders can set in, with swelling and knee pain occurring months and years later.

Doctors at the Wentworth-Douglass Hospital emergency room also have noticed an increase in cases of tick bites. Dr. Lukas Kolm, an emergency medicine physician at the hospital, said as many as a dozen patients weekly have come in with either tick bites or suspected cases of Lyme disease, compared to only half that many or less during past seasons.

"It's hard to believe it's November and people are still coming in with tick bites regularly," Kolm said.

The hospital does not have numbers on reported Lyme disease cases, but Kolm said he suspects the numbers usually are underreported anyway because the tests used to diagnose them are not always 100 percent accurate.

While nothing out of the ordinary has been reported at the state level in New Hampshire, officials in Maine say any increases this year follow a trend of more frequent tick-borne diseases over the past several years.

Maine State Epidemiologist Kathleen Gensheimer said southern Maine, particularly York and Cumberland counties, are where the most frequent findings occur, especially near the shoreline.

But recently, the state has seen reported cases of Lyme disease spread farther inland, north, and east, as is the case with other vector-borne diseases such as Eastern Equine Encephalitis and the West Nile Virus.

"We try to conduct careful surveillance of all these diseases so the medical community can provide correct diagnoses," Gensheimer said.

According to the Maine Department of Health and Human Services, the state has averaged more than 200 reported cases of Lyme disease annually from 2002 to 2004.

In New Hampshire, the state has not seen any quantitative proof that Lyme disease is on the rise or anecdotal evidence of more deer tick cases, according to Greg Moore, a spokesperson for Health and Human Services. Moore said any reports from doctors that case numbers have risen could be due to patients reporting the cases more often as Lyme disease awareness has increased.

Doctors like Dulac say they still want to encourage people to come see their health care provider if they suspect they may have Lyme disease or have been bitten by a tick.

"I just want people to know not to be alarmed," Dulac said.

'I was one sick puppy': woman with Lyme Disease

2005-11-09T20:56:00.000-06:00

Lindsay This Week - Peterborough,Ontario,Canada
In the span of a decade, Jane Davidson went from a strong, healthy woman who could portage a canoe to a severely ill woman that could hardly walk a straight line.

"I was really scared," she says.

"I just knew something was wrong."

Roughly 15 years ago, Ms Davidson began experiencing what she describes as fireworks traveling up her spine and a sensation of fireworks going off in her brain. She was tired, had muscle spasms, headaches and dizziness.

"I had no idea what it was," she says.

Ms Davidson's mysterious symptoms were initially diagnosed as a thyroid problem and she took medication for that. However, the debilitating symptoms continued to come and go.

Her body and mind continued to be assaulted by vision, speech and balance problems that began to take over her life.

But her symptoms continued to go from bad to worse.
Three years ago Ms Davidson took her illness into her own hands and began searching for a diagnosis that made sense. She began chatting online with people experiencing similar symptoms. It was these conversations that led her to believe a tiny tick bite was the cause of her illness.

"I had never even heard of Lyme Disease," she says.

Lyme Disease is an infection caused by the corkscrew-shaped bacteria Borrelia burgdorferi. The bacteria are spread by the bite of deer ticks and western black-legged ticks that are found throughout the province.

Ticks are tiny bugs roughly the size of a sesame seed that feed on blood. Ticks cannot fly, so they move slowly along the ground or settle on tall grasses and bushes until they cling to an animal or person passing by.

Ms Davidson suspects a tick bit her 15 years ago. At that time she and her former partner would spend almost every weekend hiking and camping at Jack Lake.

"We use to walk through the woods all the time, for hours," she says.

As of 2003, there were 423 human cases of Lyme Disease reported. According to the Ministry of Health and Long-term Care, not all ticks carry the disease and even if an infected tick bites a person, there is only small chance of getting the disease.

Dr. Humphreys, local medical officer of health, says Lyme Disease seems to be "relatively uncommon disease" in the Peterborough area.

"We're not seeing it and we're not getting it reported here," he says.

Dr. Humphreys notes that in 2004 there were no reported cases of Lyme Disease in the area and only one suspected case in 2005 - Ms Davidson.

"We depend upon physicians, when they see a patient, to report those cases to us," he says.
"On the whole I think doctors are aware of Lyme Disease. If it was occurring here I think we would know about it."

Ms Davidson and others Lyme Disease advocates are not convinced the disease is being properly recognized, diagnosed or reported by those in the medical profession.

"The doctors are missing it because they don't know enough," explains Ms Davidson.

"I can see how a doctor would be really challenged. It's a very sneaky illness. It can be hard."

John Scott, president of the Lyme Disease Association of Ontario, says the disease can be difficult to diagnose because the symptoms mimic other diseases.

According to the Canadian Lyme Disease Foundation, many patients with Lyme were initially diagnosed as having other illnesses including Rheumatoid Arthritis, Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Lupus, and early Alzheimer Disease.

The Ministry web site states that symptoms of the disease usually occur within one to two weeks after a tick bite. Symptoms include fever, headache, muscle and joint pain, fatigue, and a skin rash that looks like a red "bull's eye."

Yet the Canadian Lyme Disease Association states that the "bull's eye" rash occurs in roughly 30 per cent of cases, and is often missed or goes unrecognized.

Ms Davidson says after years of searching for an answer to her illness she finally diagnosed it herself, and then proved her suspicion with a blood test.

A previous blood test in 2002 came back negative.
Dave Jensen, Ministry of Health and Long-Term Care spokesperson, says there are two blood tests used in Ontario to test for Lyme Disease, the ELISA test and the Western Blot test. But both Ms Davidson and Mr. Scott argue that the ELISA test, her first test, is not very reliable.

Mr. Jensen states the ELISA test is used to screen for the disease. If the results from that test are either positive, or indeterminate, then the patient will be sent for the Western Blot test to confirm the presence of the disease.

Mr. Jensen says the Centre recommended this approach of testing for Lyme for Disease Control in Atlanta.

Frustrated with the process of testing in Canada, Ms Davidson enlisted the help of a doctor in Lakefield and mailed her own blood to California, on her own nickel, where the Western Blot test was done first. This time her results came back positive.

"It was more than positive," she says.

"I was one sick puppy."

Today Ms Davidson is on antibiotics and is feeling "a whole lot better."

She has made it her mission to see that other people do not have to go through the same experience.

"It's still an uphill climb, but I think we're turning the corner," she says.

"I'll fight this to the day I die."

Seminar in Rockland targets Lyme in students

2005-11-09T13:16:00.000-06:00

THE JOURNAL NEWS
A child's sluggishness, inattention, inappropriate behavior or moodiness can signal lots of things to teachers and school nurses from possible drug abuse to attention-deficit disorders.

Yesterday, experts added another possibility: chronic Lyme disease.

"With children, Lyme disease gets masked and might never be identified as a net cause" for problems in school, said Catherine O'Brien, special-education supervisor for Rockland Board of Cooperative Educational Services. "It's urgent for people to pay attention."

Rockland's schoolchildren had yesterday off while their teachers, administrators and staff attended workshops, discussions and lessons on how to do their jobs better. From security and substance abuse awareness to the finer points of how different children learn, the county's eight public school districts took time to expand their knowledge as part of the federal No Child Left Behind law, which requires schools to provide training for teachers.

While most districts worked with their own employees, Rockland BOCES invited special-education teachers and school nurses from across the country to Old Nyack High School for a morning-long discussion of Lyme disease.

The session, sponsored by BOCES and the Lyme Disease Association, drew about 300 people.

"I came here with all my school nurse staff because I thought it was valuable information," said Christine Healy, East Ramapo's health services coordinator. She brought 35 people to the discussion, she said.

"We look for educational opportunities and conferences like this help us learn more of what we are looking at with the children," she said. "I don't know that we've seen an increase (in Lyme cases). I think that our awareness has increased in assessing the different problems in the children. We've broadened the way we look at children who present problems."

Lyme disease is generally caught from deer ticks. If left untreated, it can cause chronic conditions that include joint swelling, facial paralysis, personality changes, fatigue, hair loss, difficulty walking, poor balance, forgetfulness, disorientation, blindness and deafness.

While most people are aware that Lyme disease exists, few educators know enough about it to think of Lyme when they deal with sudden, unexpected changes in their students, said Pat Smith, president of the Lyme Disease Association. For several years, she has appeared before school audiences to alert professionals to the complications from chronic Lyme.

Carminda Clemente, a school nurse at BOCES' Jesse Kaplan school, said she found the session helpful.

"It was interesting to learn more about whatever information they give out about Lyme," she said. "It'll help give me a better understanding."

The LDA and ILADS conferences

2005-11-09T13:12:00.000-06:00

A presentation for Lyme Disease Action by Dr. David Owen.
Lyme Disease Action web site

Below is a summary of the conferences subdivided into the areas of science, medicine and politics. The order within the sections reflects the order in which presentations were given.

The science

The conference began with Sven Bergstrom PhD who has many years of experience in the Borrelia field. His work has focussed on Borrelia in Africa where the problem of relapsing fever (RF) occurs, a disease caused by Borrelia species. There are many analogies with Lyme disease which itself is relapsing in nature. It was interesting to note that the problem of relapsing fever is eclipsed by malaria in Africa. The two often co-exist (up to 10% by PCR) but little attention is given to the RF if malaria is present. Mechanisms of immune evasion in RF were discussed and there is strong evidence that RF may persist for long periods: It is not just an acute disease as we have been lead to believe.

Steven Norris PhD has been working on factors which allow Borrelia to survive in the host for long periods. Although Borrelia is fully sequenced the function of most of its proteins is not known. It is apparent some genes are needed for survival in ticks and others in mammals. Many interact with the immune system in complex ways. Add on the diversity of the Borrelia genome and it is clear that the work to be done here will keep scientists busy for a very long time indeed and we will continue to be bewildered by the complexity of it all.

Dr. Klaus-Peter Hunfeld presented data relating to the sensitivity of Borrelia burgdorferi in vitro. Although variable degrees of sensitivity do occur there is no evidence of increased resistance after exposure to antibiotics in vitro. Comment - Classical resistance is mediated by enzyme induction and it is reassuring to note that this does not seem to occur in Borrelia. The reason for this may be that Borrelia simply does not need to use this strategy for survival – it has so many others it uses!

Terry Schultze PhD talked on the ways in which tick populations can be controlled. Biological control remains a dream but locally populations can be controlled with acaricides using various strategies. Correct timing of applications is crucial and varies with location.

The US military appears to be taking Lyme very seriously. Pat Smith, President of the LDA (Lyme Disease Association), told conference that the military may soon have access to portable equipment developed in US Army CHPPM which is based on PCR testing and enables them to determine whether a particular tick carries Borrelia or any of its co-infections. This will allow targeted treatment of bitten soldiers to be given on the spot. Comment - I wonder with prompt treatment how much future morbidity could be prevented?

Dr. Joshua Zimmerberg presented work on the culturing of Borrelia. Failure to culture Borrelia is perhaps the main reason that Borrelia has escaped attention for so long. There is hope that the culturing which takes place in gently rotating chambers will aid research into Borrelia.

In the ILADS meeting Jyotsna Shah PhD told us about testing as carried out in the Igenex lab. Igenex is the world leader in TBDs. The lab recognises the arbitrary restriction on Western Blot testing imposed by CDC criteria. The result is that more patients with Lyme disease receive benefit when Igenex is used. Testing should not be relied upon for LD diagnosis but to some degree we are all guilty of placing too much reliance on technology in medical practice.

Testing for LD is improving and Bernard Raxlen MD told the conference about promising findings using the new peptide based Elisa test. When this is used more cases will be picked up especially if the test is applied to co-infection resultant antibodies as well.

Alan Macdonald MD presented his work on Alzheimer’s dementia and Borrelia. He first publicised work in this field in the early 80s but he was widely criticised and actually driven out of practice. Borrelia DNA is being found by Dr. Macdonald in Alzheimer brains and this supports his earlier morphological work. Comment - I hope that this time his work will be received without prejudice.

Garth Nicolson PhD has spent many years working in the field of Chronic Fatigue Syndrome (CFS) like diseases and has highlighted the importance of Mycoplasma in the past. Mycoplasma can be found in ticks and is another co-infection for Lyme. Prof. Nicolson presented data relating to NTFactor, a commercially available nutritional supplement which may help some patients with persistent fatigue.

The Medicine

Lyme is such a huge field that sub-specialists (or perhaps “super-specialist” is a preferred term?) may be commonplace in the future.

Gregory Storch MD is one such specialist. He presented a talk about Ehrlichiosis/ Anaplasmosis a field in which he has great experience. Some very useful clinical pointers were given to a grateful audience.

Martin Fried MD reported a particular type of rash which may be common in Bartonella infections. He termed it a neo-vascularisation rash (new vessels induced by pro-inflammatory cytokines) and gave hints to help us distinguish it from striae or stretchmarks which it resembles. Comment -Funny rashes occur frequently in medicine and with modern technology we have a possibility of explaining some of them. The day will come I am sure when the investigation of any patient with a funny rash will be incomplete without a full Lyme co-infection screen.

Ed Masters MD like all LDMDs is not afraid of controversy. He pointed out the official inanity in failing to recognise Lone Star ticks as carrying Lyme disease. Bb has not been found in Lone Star ticks but EM and a syndrome similar to chronic Lyme disease do occur after Lone Star tick bites. Comment - Surely it will not be long before the agent (already referred to as B. Lonestari) causing ‘Masters’ or ‘STARI’ disease will be proven.

The Lonestar tick was also the focus of Susan Little DVM. She has collected data from her veterinary practice which supports the notion that Lone Star tick carried disease is a major problem for the white tailed deer population and by inference the public. The ways in which Lonestari Lyme differ from conventional Lyme have yet to be determined. In the meantime why not just Lyme?

Working alone and despite being in full time practice Daniel Cameron MD has performed a double blind study to examine the possible benefit of repeat antibiotic treatment for Lyme patients. Benefits to patients in terms of their improved functionality following repeat treatment were shown. Comment - I hope it will not be too long before it will be considered to be unethical to carry out studies such as this but in the meantime the requirement for so called evidence based medical practice means that they must be carried out. (I say so called because all practice should be evidence based – it is the level or strength of evidence which is scrutinised)

Continuing with clinical trials Brian Fallon MD presented the John Drulle Memorial Lecture. The results of a trial which is big and meticulously designed were presented. Comment - Watch this space because once published this work should rock the medical profession. The study elegantly demonstrates that re-treatment with antibiotics does benefit Lyme encepholpathic patients.

It is unlikely that antibiotics are going to be the full answer to Lyme disease. All manners of intervention may help and Dr. Richard Brown MD and Daniel Kinderlehrer MD gave a long list of alternative therapies which may help patients with any chronic debilitating condition.

Returning to antibiotics Joseph Burrascano Jr MD presented a case of chronic Lyme disease where the patient failed to recover despite lengthy combination therapies. The patient did improve after a course of Levofloxacin and Dr. Burrascano postulated that the he may have been treating a new as yet unidentified Bartonella like organism.

In the ILADS conference Raphael Stricker MD presented the results of a study of re-treatment of 174 adults with chronic Lyme disease with a combination of Clarithromycin and Cefdinir. This observational study showed patients benefited from such a combination but no comparisons were made and it was acknowledged that different combinations of antibiotics will continuously need to be examined in the future.

On the topic of combinations Azoles may become a recommended part of future treatment strategies. So suggested Stephen Phillips MD. He has been researching the properties of this fascinating group of compounds some of which are already widely used in medicine. Some are used as anti-fungals but many have anti-Borrelial properties in addition. Reference was made to a European study by Schardt published last year where fluconazole appeared to help Neuroborreliosis patients. Another space to watch.

Richard Horowitz MD presented an overview of co-infections and reminded us just how many Tick Borne Diseases there are. Overlooking co-infections was suggested to be a reason for many of the treatment failures in chronic Lyme disease.

Ginger Savely RN talked about the topic of Morgellons. These are skin lesions which are commonly dismissed as dermatitis artefacta or lesions caused by delusions of parasitosis. The lesions are usually antibiotic responsive and are commonly associated with positive Lyme tests. Comment – Erythema Migrans (EM) may be multiple and of variable morphology and may ulcerate. Could Morgellons be a form of EM?

Christine Green MD and Joseph Burrascano MD spoke about Lyme Disease treatment in their practice. With massive clinical experience behind them tips were given on when it might be advisable to increase treatment (ramp up) or decrease treatment (clamp down).

The Politics

Patricia Smith, president of the Lyme Disease Association of America, gave an update on the politics. The news is good with activity in many states. Doctors who practise in Lyme in the states will have a little more protection and it is particularly noteworthy that in New Jersey the State Board of Medical examiners contacted the LDA in a search for Lyme specialists. Again in New Jersey bills have been passed which should help to stop Insurance companies refusing to fund treatment for Lyme patients.

Finally the LDA are challenging the CDC. The LDA are attempting to use new legislation to prevent the CDC from publishing (on the web) guidelines for clinical use which have not been peer reviewed.

Dr. David Owen

November, 2005

Fatigue, pain often accompany chronic Lyme disease

2005-11-01T10:00:00.000-06:00

Reuters Health
Because Lyme disease is difficult to diagnose in the absence of the characteristic "bull's eye rash," the illness can become entrenched and difficult to treat.

In such cases, symptoms such as memory loss, irritability and fatigue, may predominate, according to a study presented at the sixth annual Lyme Conference in Philadelphia.

"No one was studying chronic Lyme disease, yet a growing number of patients were suffering with chronic persistent symptoms even after antibiotic treatment," lead investigator Dr. Brian Fallon, from Columbia University in New York, told Reuters Health.

For their study, sponsored by the National Institute of Neurology and Stroke, Fallon's group recruited 37 patients who met strict conditions for having chronic Lyme disease. The team conducted brain-imaging studies and assessed the participants' response to re-treatment.

"Based on objective tests of physical impairment, we found that the patients had levels of functional disability comparable to what you would see with congestive heart failure, as well as pain comparable to what you might expect in patients coming out of surgery, and fatigue comparable to patients with multiple sclerosis," Fallon said.

Moreover, brain-imaging studies showed "that there are widespread deficits in blood flow and metabolism in patients compared to age- and education-matched controls."

"From a strictly objective stance these patients are quite impaired," Fallon maintained. "Chronic Lyme disease clearly exists and represents a major public health problem."

The researcher said that once chronic Lyme disease patients have been treated with a 3-week course of antibiotics, they are often told that any remaining symptoms are of a psychiatric nature.

"So patients are not only are experiencing a disease causing significant disability and pain, they are also experiencing invalidation of their illness by being told they are making it up, that 'it's all in their head'," he said.

One problem is that many of the initial tests for the disease are inadequate, so negative results should be followed by more sophisticated tests. On average, it takes 1.2 years for the correct diagnosis of chronic Lyme disease to be made.

"The reason is that certain patients do not present with classic signs of Lyme disease, such as rash or joint swelling. They might instead present with a chronic fatigue syndrome-like picture or gradual increasing verbal fluency problems or memory problems, or personality change with irritability."

Fallon noted that retreatment with antibiotics can help, but "unfortunately for many patients it's not the final answer, because some will get better and then relapse again months later."

"Perhaps 30 percent of patients will need to be given additional course of antibiotics," he added. However, "the optimal duration and extent of treatment has not yet been fully delineated."

Lyme Disease Often Misdiagnosed as Psychiatric Illness

2005-11-01T09:55:00.000-06:00

Health Scout
Adults with chronic Lyme disease often display mood swings that can be misdiagnosed as psychiatric illness, causing delays in treatment for this debilitating condition, a new study found. On average, researchers say the average patient with chronic Lyme disease waits more than a year before receiving a proper diagnosis.

The four-year study, conducted by a team from Columbia University, New York, also found that over three-quarters of female Lyme disease patients, and about one-quarter of males, suffer from significant pain and disability linked to infection with the tick-borne illness.

"While much is known about early Lyme disease, very little is known about chronic Lyme disease, despite its rising prevalence and disabling effects," lead researcher Dr. Brian Fallon said in a prepared statement. The findings were presented Saturday at the annual Lyme Conference in Philadelphia.

In another study presented at the conference, researcher Dr. Daniel Cameron, director of First Medical Associates in Mt. Kisco, New York, found that the average quality of life for patients with chronic Lyme disease falls below that of patients with other chronic conditions such as heart failure. Re-treatment with the antibiotic amoxicillin can help ease patients' symptoms, however.

Author Tan back in the swim

2005-11-01T09:52:00.000-06:00

Rocky Mountain News
Amy Tan's last book, 2003's nonfiction collection The Opposite of Fate, closed with an essay about her struggle with Lyme disease. Tan described increasingly alarming symptoms, including joint pain, difficulty with organization, and visual hallucinations, and she left her fans with a cliff hanger: When she wrote that essay, it wasn't clear if she'd ever be able to write another novel.

With the publication of her new novel, Saving Fish from Drowning (her first since 2001's The Bonesetter's Daughter), Tan's admirers can breathe easy.

In a phone interview from her San Francisco home, Tan said that during the worst days of her illness, "It's like pieces of my brain were sand, just rolling out, and I felt I was trying to gather the sand before it completely leaked out."

She worried that she'd never be able to complete another book, but added, "What's kind of strange, however, is that you feel apathetic. I would be anxious about my not being able to think that well and work, but on the other hand, I didn't have the energy to fight it that much."

You might think that once Tan was finally diagnosed and began to improve, she would go easy on herself and tell a simple story, but shirking a challenge has never been her approach. Saving Fish from Drowning is a sprawling, 500-page tale with more than a dozen main characters and just as many plot lines. The book marks a departure for the author, as it's the first of her novels that doesn't largely focus on Chinese and Chinese-American characters and mother-daughter themes.

Instead, it tells the story of a group of 12 Americans of different ages, genders and ethnicities on a trip in China and Myanmar (formerly known as Burma), who end up trapped in the jungle village of a persecuted minority tribe.

A touch of the familiar Tan comes through in the voice of the deceased narrator, the dynamic Bibi Chen, a San Francisco art maven whose mysterious murder begins the tale. Chen is fictional, and all of the events in the novel are likewise products of Tan's imagination, but Tan's playful approach with the book's opening might leave some readers unsure.

In "A Note To The Reader," Tan describes an unusual event that sparked the book's creation. Caught in the rain in Manhattan, she writes, she ducked into a building called the "American Society for Psychical Research," where she found the "automatic writings" that a California woman claimed had been dictated to her by the spirit of Bibi Chen.

This tale sounds far-fetched enough for fiction, but anyone who has read The Opposite of Fate, replete with tales of bizarre spiritual occurrences in Tan's life, is primed to believe the author's reports of strange coincidences and ghosts.

"I wanted to start this book off with everything in there being a question of what's true and what's not true," Tan said. "So, for example, in the epigraph, you have something that was said by Camus that was truly something he said, and then you have a quote attributed to anonymous which was actually written by me."

Similarly, although there is a real American Society for Psychical Research, it contains no automatic writing that Tan used directly for the novel. When Tan visited the Society, she said, "there were files on automatic writing and I thought, 'Wouldn't it be great if a whole book were just sitting right there for me and I could just take it home and copy it?' So that part was made up, and the whole thing about Bibi Chen - that wasn't anybody that ever existed . . ."

"But the strange thing is," Tan continued, "I had a friend read this book early on, and he said, 'It's great that you actually knew this woman and that this all took place in your home town.' And I said, 'What are you talking about?' And he said, 'Well, you knew Bibi.' And I said, 'Bibi? You think she's real?' And he said, 'Well yes, of course.' And I said, 'Do you remember a story about a woman who was murdered in San Francisco who was really well known?' " said Tan, referring to her fictional backstory for Bibi Chen. "And he goes, 'Yeah, I think I do.' "

While Tan fashioned the book after Chaucer's Canterbury Tales, centered on 12 people who go on a journey, she also wanted to include her deceased mother in the story.

"I had just lost her just a few months before I finished The Bonesetter's Daughter, and suddenly I realized at the end of it that it wasn't that I had to write another mother-daughter story, but that my mother - her voice - could be the narrator. She could be the dead narrator, the dead travel guide, and she could have all that humor and wry observation and feistiness that my mother had and she could come along on the trip."

Although Tan wrote with the Canterbury Tales in mind, one of the few detectable traces of this influence is in the name of one character, Harry Bailley, who was the innkeeper in Chaucer's tales and surfaces as "a British-born celebrity dog trainer" in Tan's novel. "I don't think most people would catch that," Tan said. "These are little things that are more like postcards to myself. "

Another Chaucer-like touch is the humorous tone of Tan's novel: Although it begins with a murder and includes a host of misfortunes, the book is a fun read, and the overall effect is comic. Tan said the choice to leaven some of the serious underlying issues of the book - which touches on questions of human rights in Myanmar - was a conscious one.

"It's a comic novel because I wanted to address something that was very serious, something that disturbed me that was about morality and ignorance and intentions and about a situation in the world that is very, very sad," Tan said. "And the only way that I felt that I could approach it was with humor. Humor to me is a way of opening yourself up. . . you're not approaching a subject with extreme reverence that makes the complete picture impossible to see. With humor you just sort of shake loose everything that is in you and when you're opened up you can confront what is darker and harder to look at."

Much of this humor is conveyed through Bibi Chen's wry narration. Chen, who was supposed to be the group's tour guide before her murder, instead serves as a ghostly guide, keeping readers entertained with observations such as: "Throughout history, many a world leader was injudiciously influenced by his malfunctioning bladder, bowels, and other private parts. Didn't Napoleon lose at Waterloo because he couldn't sit in a saddle, on account of hemorrhoids?"

Saving Fish from Drowning is in large part a rollicking travel narrative, and Tan does a masterful job of capturing the unease Americans feel when traveling in countries where they don't understand the language, especially at border crossings and passport checks where scowling, armed officials often engage in "ten minutes of inspecting and stamping and huffing with authority."

Tan teases the reader with such scenes, by having Bibi state right away that the trip is going to go awry. But true to the book's comic tone, some of Bibi's most ominous foreshadowing presages a group bout of traveler's diarrhea. Tan said she included this event partly for "verisimilitude."

"I was recently going into the interior of China, and you're on a bus being jostled about for eight hours a day, bumping up and down and knocking your head into the window, and there were people having diarrhea. There's never been a trip I've been on that somebody did not have a problem like that. For me that just had to be in there because it would have been unrealistic to have nobody get sick."

Suspense builds throughout the book as the reader wonders what is going to become of these bumbling, very American travelers. Tan "wanted to bring the story to a point that I knew was going to be very uncomfortable," she said. "As they go further on this journey, they're going to encounter deeper and deeper moral issues for themselves," and become increasingly unsettled by the country's repressive regime.

With all of the confusion, cultural missteps, and ominous signs throughout the novel, the ending may surprise some readers. "What I hoped to get across is that we simply left the story off at a certain part of their (the characters') lives that is to me on some scale of happiness, probably right there about in the middle, and you don't know for certain which way their lives are going to go."

As for Tan's life, a year and a half ago she embarked on a project with the composer Stuart Wallace to reinterpret The Bonesetter's Daughter as an American opera. She estimates the opera will premier in 2008.

"What I've learned from all of it is that you cannot translate an original work to another form, to another medium. You have to really take it all apart and pare it down to literally its bones and then recast it and recreate it with the bones in a different configuration and give it its own life."

Tan is clearly back on her feet and making up for lost time. "I went through quite a period of struggle there," she admits, "and it really just took finally getting treatment so that my brain could come back. It was literally as though the fog had cleared when finally I started getting better."

Lyme Disease: A Public Health Crisis Ignored

2005-10-30T22:43:00.000-06:00

TheDay - New London,CT,USA
A Florida State quarterback is found half-naked and disoriented in downtown Tallahassee. Pop singer Daryl Hall cancels part of his national concert tour. Author Amy Tan is writing a new book about it.

The picture is clear: Lyme disease has hit the front burner.

Lyme disease is a major public health problem and growing crisis. It's the most prevalent bug-borne illness. According to the Centers for Disease Control and Prevention new cases are reported in about 20,000 people yearly and this number represents a 10-fold underestimate.

Lyme disease is caused by a complex bacterial agent carried and spread by ticks. The Lyme bacteria have the ability to evade immune destruction, entrench themselves deep within tissues and migrate throughout the body with impunity causing a multi-system illness that can be baffling to many physicians.

The result is that one tiny tick bite can cause innumerable symptoms running the gamut from muscle and joint pain to heart disease to neurological and even psychiatric illness. Lyme patients may be misdiagnosed as having other serious diseases such as lupus, multiple sclerosis, rheumatoid arthritis and psychiatric disorders. The take-home message is Lyme disease may be hard to diagnose and difficult, if not impossible, to fully eradicate if not caught early.

Why is that?

• First, there is no single reliable diagnostic laboratory test. The common two-tiered blood test cannot be solely relied upon for diagnosis. The initial ELISA screening test can give up to 50 percent false negative results, and just as disheartening, many laboratories interpret the second Western Blot test by highly restrictive CDC criteria that miss many cases.

Better tests are described in the medical literature, but haven't seen the light of day. So some patients seek more sophisticated testing by approved reference laboratories — labs within a single state that get samples from around the country — but which often don't take their insurance companies and frequently pay for their tests out-of-pocket.

Furthermore, a person with “Lyme disease” may be co-infected with other organisms and “co-infections” often require different antibiotic therapy compared to Lyme.

• Second, there is no universally accepted treatment. During chronic infection the organism burrows deep into tissues that some antibiotics can reach only marginally. This is but one of many reasons why a two-to-four week treatment cannot eliminate chronic infection.

The consensus opinion of the International Lyme and Associated Diseases Society is that an individualized treatment approach is necessary based on clinical judgment.

ILADS is a multi-specialty medical society comprised of virtually all sub-specialists who treat Lyme disease, including infectious disease specialists, neurologists, rheumatologists, psychiatrists, endocrinologists and internal medicine physicians. We've published diagnostic and treatment guidelines in peer reviewed infectious disease medical literature, which stand in stark contrast to the guidelines of some infectious disease specialists who reject voluminous medical data documenting persistent infection and co-infection.

What should be done?

We, the clinical doctors who man the frontlines of treatment, extend an olive branch to our colleagues with divergent opinions to work together to develop practical diagnostic and treatment protocols.

We believe it is essential for patients with Lyme symptoms to be tested for multiple tick-borne disorders. We know better tests exist and recommend the entire medical community push for them.

We encourage the education of all medical personnel about the array of Lyme symptoms and its related infections in order to increase the number of health care providers who can recognize and treat these illnesses.

In the early days of the AIDS epidemic activists screamed for attention to get medical care. We hope Lyme patients are not forced to follow the same path, but we will not be content until Lyme disease is yesterday's news.

Chelmsford Woman Tells of Battle With Lyme Disease

2005-10-27T23:54:00.000-05:00

Lowell Sun - Lowell,MA,USA
Rosalyn Tavanis has to soak her hands to numb her “excruciating pain.”

A violinist who once played with ease and grace, she now has to spend hours preparing to teach violin at a Chelmsford after-school program.

“The children I teach give me so much joy,” said Tavanis. “I try hard not to show them my pain.”

Tavanis' pain is from chronic Lyme disease. In Massachusetts, Lyme disease is spread by deer ticks. If not treated early, it can cause major damage to the central nervous system, the heart and bones and joints, doctors say.

Tavanis' symptoms have been overwhelming. She's been blind in one eye and suffered from extreme nerve and skin pain. Tavanis has trouble walking and has had such severe vertigo that simple trips to the grocery store became too much to handle.

Hundreds of Lyme disease patients and activists rallied at a Statehouse hearing two weeks ago to draw attention to the disease. Some activists complained that doctors aren't doing enough to treat the disease, and insurance companies are afraid of the high costs associated with long-term care.

Tavanis is in the later stages of the disease. Despite some neurological damage, she remains highly competent and ready to fight for her cause. She wants to be a role model for other chronically ill people.

“Everyone should be their own advocate,” said Tavanis.

Tavanis has been an advocate for herself and her daughter, Angela Stone.

Recently, as part of an overview on the rise of Lyme disease cases statewide, The Sun reported on Angela's struggle with Lyme disease. Tavanis didn't know she had Lyme disease, and she passed it to Angela in utero.

“I'm heartbroken that I did this to my child,” she said.

Tavanis said the disease is often “misdiagnosed.” She was bitten by a tick in 1989, and after two weeks of antibiotics, she thought the symptoms went away. Three years later, the symptoms came back, and she said doctors “misdiagnosed” Tavanis with multiple sclerosis. She was put on high doses of steroids, which shut down her immune system.

“I felt like I was being poisoned,” said Tavanis.

She said doctors never “bothered to scratch the surface” and “dismissed her as being emotional.”

When her daughter became seriously ill, Tavanis had to fight with her primary-care physician to test Angela's blood for Lyme disease.

“I said if you draw the blood, I'll drive it down to the lab myself.”

Angela eventually tested positive for Lyme disease.

Tavanis says she's devasted by the physical and emotional impact the disease has had on her daughter and is worried about the future.

She will continue to soak her hands to play the violin, and said, “it takes so much for me to play so little.”

NCO Press Release

2005-10-24T20:18:00.000-05:00

American Book Publishing
"NCO-No Compassion Observed"
Bedside Books
ISNB 1-58982-249-8

Company Information:
American Book Publishing
3816 Pecan Grove Cir
La Grange, North Carolina 28551
Ph. 1-252-566-9559

*****
Holed Up In A Fox Hole With One Last Bullet

For Immediate Release
LA GRANGE, N.C./EWORLDWIRE/Oct. 20, 2005 --- The crime - a U.S. cover-up. The results - rioting, assault and kidnapping. The punishment for a civilian uncovering the truth - revenge. The civilian is Sue Vogan. The story is true.

Readers will find themselves laughing, crying and on the edge of their seats. In the end, everyone will be screaming for truth, justice and the American way.

http://www.pdbookstore.com/comfiles/pages/SueVogan.shtml
http://www.geocities.com/suelymer97/NCO.html

Reviews:

"A quick, devastating, and enlightening read…a metaphor for the systemic forces in our society that prevent effective diagnosis and treatment of this multifaceted and all-too- often ignored disease."
- David Moyer, Lt Col, Ret, USAF

"Sue Vogan is a true patriot. Sue's affection and services for our military must be recognized, and her book is a must-read."
-Sunny Park, winner of USO Patriot Award; founder, Good Neighboring Foundation

"'NCO, No Compassion Observed' is an indictment not only of how the US military treats dedicated and loyal members of the armed forces and their families, particularly during a time of medical crisis, but it is also a call to arms for the rest of the country which benefits from their sacrifices. Sue's self-deprecating account of her struggle with Lyme disease and her 20-year veteran husband's attempts at getting help within the system to which he dedicated his life, is all the sadder because it is so true of thousands today - both within and outside the confines of the military. This is a book to which the American public should pay attention."
-Denise Lang

"Knowledge is power; this book is properly researched and annotated. It's well written and easy to read. Know your enemy. In short, if you want to know about Lyme, buy the book and read it."
- Tom Travis, County of Ventura/Environmental

"Sue Vogan is a remarkable writer. She has such a way with words that you can actually 'see and feel' what she is writing about. The story of NCO has been long in coming."
- Lida H. Mattman, Ph.D., author of "Cell Wall Deficient Forms, Stealth Pathogens, 3rd Edition"

"Sue Vogan, courageous wife of an American soldier, gives a first-hand exposé of the military. Read about her husband's illegal job assignment, the military's nightmarish health care system and other 'hush-hush' occurrences she witnessed. In this heart-wrenching, true story, see how she contracts Lyme disease, then her husband Tim is sent to South Korea, only to be listed as AWOL when released on leave. Left destitute only months away from retirement, Tim faces the fact that his wife is seriously ill, and doctors are actually refusing to treat her. Learn about the true horror of living with Lyme disease. Help Sue fight for the fair treatment she deserves from the military. A must-read for all educated citizens of America."
- American Book Publishing

Leo Bogart, 84, Sociologist Who Studied Role of Media in Culture, Is Dead

2005-10-22T14:52:00.000-05:00

NY Times
Leo Bogart, a sociologist, author and marketing specialist who was known for studying the role of the mass media in culture, died Saturday at Mount Sinai Hospital in Manhattan. He was 84.

The cause of death was babesiosis, a parasitic disease that is transmitted by ticks, said his wife of 57 years, the former Agnes Cohen.

Dr. Bogart, who also studied advertising and public opinion and wrote nearly a dozen books, argued that market forces should not be the sole determinant of media content. He decried the increasing presence of violence and sex in film and television, asserting in his most recent book, "Over the Edge," that advertisers degrade content through their desire to capture the youth market.

He was an influential figure in the marketing and advertising industries. He served for many years as the executive vice president and general manager of the Newspaper Advertising Bureau, the sales and marketing organization of the newspaper industry.

He taught marketing at New York University, Columbia University and the Illinois Institute of Technology. He was a senior fellow at the Center for Media Studies at Columbia and a Fulbright research fellow in France.

At his death, Dr. Bogart was a director and senior consultant for Innovation, an international media consulting firm, and wrote a column for Presstime, the magazine of the Newspaper Association of America.

Dr. Bogart was born in Lwow, now Lvov, Poland, and moved to the United States with his family at age 2, eventually becoming fluent in seven languages. After graduating from Brooklyn College in 1941, he joined the Army Signal Intelligence Corps. Fluent in German, he intercepted communications in Germany during World War II. He chronicled that experience in his memoir, "How I Earned the Ruptured Duck: From Brooklyn to Berchtesgaden in World War II." He earned a doctorate in sociology at the University of Chicago.

After checking into Mount Sinai on Aug. 7, Dr. Bogart learned that he had babesiosis, a malarialike infectious disease that destroys red blood cells. It is typically found in coastal islands of the Northeast, and Mrs. Bogart said her husband might have contracted it on a trip to the couple's home on Long Island.

In addition to his wife, he is survived by two children, Michele H. Bogart and Gregory Charles Bogart; and one grandchild.

Tick-Borne Disease Transmission by Blood Donation Prevalent in Endemic Areas

2005-10-20T09:52:00.000-05:00

Medscape Medical News
The need to develop strategies to prevent transmission of tick-borne disease via blood transfusion is increasing as new reports continue to surface. Although not as much in the popular press as Lyme disease, Babesia microti is creating its own quieter havoc.

In a study presented here at the Infectious Diseases Society of America 43rd annual meeting, Megan Nguyen, BS, from the American Red Cross in Rockville, Maryland, presented data from a six-year study that showed the prevalence of B microti transmission via blood transfusion in areas where the tick is commonly found.

Examination of 13,573 samples from blood donors from 1999 to 2004 in endemic regions of Connecticut showed that 175 samples (1.3%) tested positive for B microti infection based on indirect fluorescent antibody testing.

Of these 175, 129 donors consented to participate in a three-year follow-up study in which they were tested by IFA for the presence of antibodies to B microti as well as receiving nested polymerase chain reaction (PCR) testing for parasitemia on a regular basis. Overall, 27 donors (21%) were found to have parasitemia as indicated by a positive PCR test, suggesting that some patients have persistent, ongoing infection.

In addition, parasitemia rates decreased from 55% in the first two years of the follow-up study to 3% in the third and final year. Ms. Nguyen said the study did not show a clear reason for this, adding that many factors could account for it.

Ms. Nguyen emphasized that "anybody who has had B microti is permanently prohibited from donating blood" and is registered in the blood bank system of the Red Cross nationwide. However, it is important to identify those people infected with B microti prior to blood donation. According to Ms. Nguyen, most of the transfusion-related transmission occurs through people who are infected with the tick-borne disease but who are asymptomatic.

Identifying infected people before they donate blood is therefore an important goal in reducing the risk of transfusion-related B microti transmission, but the best way to do this is not yet clear, she said.

Richard Whitley, MD, a professor of pediatrics at the University of Alabama in Birmingham who moderated the session, told Medscape that prospective blood donors are not currently screened routinely for tick-borne diseases, an issue that needs to be addressed by local blood banks.

However, Ms. Nguyen told Medscape she is hopeful "that there will be screening" or a U.S. Food and Drug Administration (FDA) approval for testing before donation. Unfortunately, she added, she does not know of any test under investigation for FDA approval.

Faith and family

2005-10-20T08:26:00.000-05:00

Kane County Chronicle
One of the joys in Bob Hoffmann's life has been watching his sons play football for Batavia High's Bulldogs. He was in the stands for his middle son, Tom, through his senior season in 2002, and for his youngest, Dan, last year. Bob looked forward to this season, Dan's senior year, but in the space of 12 months, a simple trip to the high school's stadium has become an increasingly difficult journey.

It began for Bob last fall as just a simple limp. By Christmas, he was using a cane to help keep balanced, but that gave way to a walker in February. With stunning speed, his condition deteriorated so that, by April, Bob needed a wheelchair. And when July came, Bob was in bed, his breathing aided by a ventilator.

What caused his condition still is being debated, with one set of doctors diagnosing amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease), and another saying he suffers from Lyme disease. Whatever the cause, it has taken a devastating toll on Bob.

I sat with his wife, Vicki, by his bedside yesterday and listened as Bob talked about this past year, about his family, his friends, and his faith. Because of the ventilator, speaking is difficult for Bob. Although he labored to form his words, his message was positive and uplifting.

"I am very thankful and blessed," he said. "I have a wonderful wife and kids, and I have immense support from our friends. My faith makes me strong, and I have put my trust in God."

Bob's illness has, of course, turned life upside down for the entire Hoffmann family. Vicki shoulders most of the day-to-day responsibilities, with a lot of help from Dan, and recently oldest son Bob Jr., 24, moved back home to help. Daily therapy sessions seem to have halted further physical decline, but given the different diagnoses Bob has received, it's hard to know whether it is the right treatment.

"We're praying it's Lyme disease," Bob said. "You can recover from that. ALS you can't."

Not that Bob has a doubt he'll recover. "It will be a long road back," he said. "But I have faith I'll walk again."

Lest anyone discount Bob's faith and tenacity, he also pledged to make it to Dan's football games this season, and last week he did.

Making the trip in a specially equipped van rented for the purpose and aided by a portable ventilator, Bob was on the sidelines last Friday. And it's where he'd like to be this Friday for Dan's final game. However, sheer willpower might not be enough to make that happen; this time it might take some help from the community.

Although their own vehicle is being converted to be wheelchair accessible, it won't be ready for a few weeks. So for Bob to make the trip to the game, the Hoffmanns must continue to rent a van. It comes at a fairly high price: Vicki told me a month's rental will run $1,800, and obviously, Bob's illness has put a severe strain on the family's finances. Strain or no, Vicki knows how important it is for Bob to be there for his son — and the same is true for Dan. Having his father there for senior night would mean the world to him.

In my comings and goings associated with this column, I get to meet many people. Some I like; some I don't. Some I have respect for. Some I even think are terrific leaders in the community. Who I rarely meet are those I'd consider an inspiration, but that changed at Bob Hoffmann's bedside.

I am truly humbled by his abiding faith, and equally so by the love of his wife and sons. This is a family that has seen incredible heartache this past year, but has somehow weathered the storm. When I left, Bob he offered this thought: "I'm not sure how this will end up, but we know God will somehow work good with it."

I hope they can all be together tomorrow night as Dan Hoffmann runs out on the field. And if you are there, stand and cheer so his dad can hear.

Doctor calls for Lyme patients to step forward

2005-10-18T09:51:00.000-05:00

Westmorland Gazette - UK
A LEADING doctor is urging people who think they might have been affected by Lyme disease to get in touch, reports Jennie Dennett.

Dr Peter Moody, the clinical director of pharmacy for the Morecambe Bay Hospitals NHS Trust, is trying to get an idea about how common the condition is.

It follows the case of an Ulverston seven-year-old who picked up Lyme Disease in September after being bitten by a tick playing in woodland at Lakeside.

The disease is spread by the blood-sucking parasites that dwell in woodland and long grass. It causes a nasty rash and flu-like symptoms but, left untreated, it can get much worse.

Sufferers can develop symptoms like chronic tiredness and joint pain, meaning patients are sometimes mis-diagnosed with ME. It can also cause Lyme arthritis and in other, severe cases, it can become chronic, attacking the nervous system, causing numbing, hearing loss and even dementia.

Cases of Lymes in the UK have been steadily climbing, something thought to be due to a combination of better reporting of cases and an increased prevalence of ticks because of a warmer climate.

However, because it is not a notifiable disease, meaning health authorities do not have to log all instances of Lymes, it is not clear exactly how many cases there have been and if it is an increasing problem locally.

Dr Moody said: "The nature of our local countryside is such that ticks thrive and, although only a certain percentage are infected, there is the potential for Lyme disease to spread."

He is now preparing a talk on Lymes to be given at Furness General Hospital on November 23 to local doctors, including GPs and hospital staff.

To prepare, Dr Moody wants anyone to get in touch anonymously and let him know if they have become ill as a result of a tick bite.

"A readership survey is not a scientific determinant of prevalence, but it will give me some indication," said Dr Moody.

Earlier this year, Dr Ray Maglone, the clinical director for Accident and Emergency services in Morecambe Bay Hospitals, issued advice to casualty departments to be aware of tick bites and to treat any affected patient with a short course of antibiotics to prevent the development of Lymes.

Anyone who thinks they have been affected should leave a phone message on 01229-491157 or write to Dr Moody at peter.moody@ fgh.mbht.nhs.uk, or at the Pharmacy Dept, Furness General Hospital, Dalton Lane, Barrow-In-Furness, LA14 4LF.

Volunteers can take part anonymously.

I Nearly Lost William

2005-10-18T09:41:00.000-05:00

Western Daily Press - UK
Mother-of-five Tracey Thorpe yesterday told how her six-year-old son contracted a mysterious, debilitating and potentially deadly disease while playing near his rural Wiltshire home. The symptoms left medics stumped and only a chance remark by a hospital consultant led to William, whose face was paralysed and who was suffering searing headaches, being successfully treated.

He had become a victim of Lyme Disease, which is spread by ticks that feed on infected sheep or deer, and can cause serious heart and nervous system conditions if untreated.

Following William's full recovery after an intense bombardment of drugs, a relieved Mrs Thorpe, 44, yesterday spoke about her family's anguish in order to warn other parents about the condition.

She said: "Living in a wood we'd heard of Lyme Disease, but the symptoms we had always been warned to watch for were flu-like.

"William's condition was nothing like the flu. He was getting worse and worse, his face was terrible, and no one knew what was wrong with him. I dread to think what might have happened." The family live in a wood next to the remains of Fonthill Abbey, near the village of Hindon in south Wiltshire, where Mrs Thorpe's husband John is the gamekeeper.

During mid-July William, who has four older sisters, developed a swollen neck under his right ear and the local GP diagnosed mumps, even though he had received his MMR jab.

But a few days later Mrs Thorpe realised something strange was happening to the right side of her son's face. "I was the only one who noticed at first. It looked like palsy, like he had a stroke. It was becoming paralysed." Around the same time William began suffering excruciating headaches and then developed a rash, prompting his parents to fear he had contracted meningitis.

Another doctor who examined him consulted her medical books, but was unable to find an answer and referred William to paediatricians at Salisbury District Hospital. Mrs Thorpe said: "By this time his face was completely paralysed down the right side." One of the doctors who examined William was unable to say what was wrong and spoke to the consultant in charge.

When the doctor came back he asked, almost as a long shot: "You don't happen to live in a forest do you?" When Mrs Thorpe said "yes" they said it might be Lyme Disease. She said: "I remember pulling a tick from the back of William's head about three weeks earlier.

"It left a small red mark. I'd forgotten all about it. But none of his symptoms matched what I'd heard about Lyme Disease." For the next week the youngster had to take eight steroids a day, five "horrible tasting" anti-viral tablets, antibiotics and eye drops, as his eyes were in danger of being affected.

His mother said: "If it wasn't for that chance remark about living in a forest then I don't know what would have happened." A blood test later confirmed it was Lyme Disease, which was probably caused by a tick that fed on a deer in the woods where the family live. Mrs Thorpe said: "We all get bitten by ticks here, but the one which bit William was obviously infected.

"It seems to me that the same thing could happen to anyone who goes for a walk in the wood or the countryside.

"Because of what happened to William I want to urge parents to be vigilant for rashes or red marks from tick bites.

"It's an awful disease, I'm just so relieved William is over it." Internet sites speak of people whose lives have been wrecked by the disease, suffering a catalogue of sickness.

ACROSS the UK, doctors believe there is a rising incidence of Lyme Disease, possibly because of growing awareness of the illness.

It is picked up in woodland or heathland, in areas such as the Quantocks, Exmoor and the Mendips.

Last month the Western Daily Press reported how Andrew Tincknell, from Congresbury, had the disease for months without realising.

And John Pym, from Tintinhull, near Yeovil, battled through three years of suffering before self-diagnosing himself on the internet.

Some NH doctors dispute CDC approach

2005-10-16T00:02:00.000-05:00

THE UNION LEADER - New Hampshire
Thirty years after a mysterious illness began showing up around Lyme, Conn., there is ongoing debate among physicians about how to properly diagnose and treat what is now known as Lyme disease.

Doctors agree that most cases of the tick-borne illness can be treated with antibiotics if discovered early enough, before the bacteria that cause it spread throughout the body. But some patients go on to develop debilitating symptoms, even after antibiotic treatment, and medical experts disagree about why that is.

Dr. Jose Montero, New Hampshire's state epidemiologist, said it's not clear what causes chronic symptoms - including fatigue, muscle and joint pain, and cognitive impairment - in some patients: "If it is an ongoing infection, if it's an immune, long-term reaction, or if it's not related to Lyme disease and there is something else that we are missing - all of these things are real possibilities."

Montero said the state health department refers callers who ask about Lyme disease to scientific sources of information, such as the Centers for Disease Control Web site - and tries to steer them away from others.

"I usually tell the patient not to 'Google' Lyme disease, because they are going to get to several different places - and I understand most of those Web sites are well intended - but they are not that accurate, and they put in people's minds several more fears than what they need to have," Montero said.

CDC's open question

So what does the CDC think is going on with these chronic patients?

Paul Mead, a medical epidemiologist with the CDC, said it's "still a little bit of an open question."

But he said, "I think in general the studies seem to suggest that for a sizable proportion of the people who have these chronic symptoms following Lyme disease, who have been treated, that it is not the result of persistent infection with the organism, but some other reaction of the body to having been previously infected."

"And part of the rationale for that is that it's not clear if you give them longer courses of therapy they necessarily benefit."

"Can I say chronic infection never, ever occurs? No, of course I can't, and that's where one has to not be dogmatic about these things," Mead said.

What if some Lyme isn't really Lyme?

Long-term concerns

The CDC's Web site warns against long-term treatment for these patients: "Longer courses of antibiotic treatment have not been shown to be beneficial and have been linked to serious complications, including death."

But some physicians who treat New Hampshire Lyme patients say the CDC's guidelines for testing and treatment of the disease are far too narrow, and result in unnecessary suffering.

Dr. Rex Carr, a West Lebanon physician, has treated hundreds of patients over the past several years for what he carefully calls "Lyme disease or a Lyme-like illness."

"All we really know is that we have a group of people who have this set of symptoms, and the majority of people that have this set of symptoms seem to ultimately improve when we give them these antibiotics," he explained. "But we don't really know if what we're treating is 'Lyme, Connecticut' Lyme disease; or a cousin of Lyme disease, another strain; or even a third thing that has nothing to do with Lyme disease."

"But I believe the bottom line is there is no good reliable test, and that's the reason for the controversy," Carr said.

What convinced him

Dr. Don McNeel, a family physician in Portsmouth, said there are currently two standards of care when it comes to Lyme disease. "Because what's happened is traditional...medicine sees Lyme as an acute illness that's treated briefly and the majority of patients go on to do well. I think that's probably true."

But he said, "There's a handful of patients who go on to have a constellation of symptoms that's very vague, that can be explained by a lot of different disease processes, but when you put it all together, it ends up they probably indeed have chronic Lyme."

It was the patients who convinced him, McNeel said. "Two years ago I was in the same camp that most docs are now."

Then he attended a Lyme disease conference, where New Hampshire patients' stories of suffering and misdiagnosis convinced him to look deeper. He currently treats chronic patients with a combination of antibiotic, physical and nutritional therapies.

A specialist in physical medicine and rehabilitation, Carr said he, too, was "clearly a skeptic" at first that Lyme disease was causing the chronic pain and fatigue so many of the patients referred to him were experiencing. "Then I started reading and reading."

And he said, "When the first patients I started to treat (with antibiotics) started to get better and better and better, I said there is something to this." He now believes the majority of patients diagnosed with fibromyalgia, a disorder characterized by aches, muscle pain and stiffness, actually have Lyme disease or a related infection that responds to antibiotics.

The tough cases

Dr. Alex Granok is an infectious disease specialist who practices in Nashua and Manchester. He said what often gets missed in all the debate about Lyme disease is the important message that with early diagnosis and treatment, most patients will recover just fine.

Granok said physicians in his practice tend to see more difficult cases of Lyme disease. "Most of the patients that we see lately have been in the hospital. They have come in with palsies, meningitis, joint symptoms, heart problems."

One of his patients continued to test negative in blood tests, despite clinical symptoms of the disease, including facial palsy on both sides. "That does happen," he said. But after treatment with intravenous antibiotics, that patient has "pretty much recovered."

Today vs. tomorrow

As for patients who continue to have symptoms even after antibiotic therapy, Granok sides with the CDC view. He said physicians who believe there is an ongoing infection are considered outside of mainstream medicine.

"And who knows, 10 years from now, we may find out they're all correct and we have to change our thought process," he said.

Granok said he's up front with his patients about that. "I tell people we think it's probably an immune-mediated problem, but medical science changes . . . Twenty years ago, we didn't think ulcers were caused by bacteria, and someone just got the Nobel Prize for (discovering) that."

But he said, "For now, I would say I don't believe that chronic symptoms past one month of therapy are likely due to active infection, and I would not recommend treatment with antibiotics in those cases."

Others strongly disagree.

Long-term treatment

Dr. Sam Donta is an infectious disease specialist; he retired as a professor of medicine at Boston University two years ago, and is now in private practice in Massachusetts. He estimates he's treated "several hundred" patients from New Hampshire in the nearly 20 years he has been studying and treating Lyme disease.

For his patients who have been ill for more than a couple of years, Donta said, the average course of antibiotics that relieves their symptoms is 18 months. "That's just the way it's worked out. I've learned from listening to patients, and knowing something about infection and something about antibiotics. I think I'm on the right track."

Donta contends those who reject the possibility of chronic infection "are being unintellectual and non-academic."

"You have to allow for the unknown," he said. "To me it's so logical: The very symptoms for which we diagnose a person with Lyme disease, when those symptoms persist, we don't ever further consider it to be Lyme disease?"

And he said the fact that patients eventually do get better with long-term antibiotics is convincing evidence they were still infected.

Call for research

Donta said the CDC was slow to endorse long-term treatment for hepatitis and HIV, now accepted medical practice. And likewise, he believes when it comes to Lyme disease, some medical experts "drew their conclusions early and they're reluctant now to conclude they're wrong."

Medical professionals agree on one thing: More research is needed to solve the mystery of chronic Lyme disease.

"It's up to the scientific community and whoever funds research . . . to clarify what's going on with these people," Montero said.

"I truly believe the suffering is real. It's just that I cannot explain it."

Insurers hit on Lyme disease

2005-10-15T10:01:00.000-05:00

Lowell Sun - Lowell, MA, USA
With the number of Lyme-disease cases skyrocketing in Massachusetts in the past five years, some advocates are accusing insurance companies of pressuring doctors not to fully treat the disease because of the expense.

John Coughlan, director of the Massachusetts Lyme Disease Coalition, says physicians are being bullied by insurance companies who don't want to pay high health-care costs.

“It's a costly disease if it's chronic,” says Coughlan. “A lot of physicians will not treat Lyme disease because insurance companies give them such a hassle.”

“We treat any Lyme disease that's diagnosed and rely on our providers to diagnose that,” says Sharon Torgerson, spokeswoman for Harvard Pilgrim. “We have no restrictions as long as it's diagnosed by an in-network physician.”

Alan Stone of Chelmsford told lawmakers at a Statehouse hearing Wednesday about his “20-year-long nightmare” with the disease.

Stone, his wife, and daughter are all infected. Stone's wife is in the late stages of Lyme disease and has suffered severe neurological damage, he says. His daughter Angela, 14, contracted the disease in utero.

Stone has undergone multiple rounds of physical therapy for neck stiffness from the disease, while his wife was misdiagnosed with multiple sclerosis and put on steroids, damaging her immune system.

“The question is who is going to pay for all these patients,” says Stone. “Late-stage patients tend to be very expensive. You can't even project that kind of cost. The sky's the limit when it comes to Lyme-disease patients.”

Lyme disease is caused by bacteria spread by tiny ticks. In Massachusetts, the disease is spread by deer ticks. If not treated early, it can cause major damage to the central nervous system, the heart and bones and joints, doctors say.

Local communities, including Chelmsford and Westford, have seen Lyme-disease cases spike this year. Chelmsford has had 21 cases reported this year, up from 12 in 2004. In the past three weeks alone, 20 cases have been reported in Westford. Last year there were just 10.

Patricia Smith, president of the National Lyme Disease Association, says insurance companies are pressuring physicians to stop prescribing antibiotics.

“What we've been told by physicians around the country is that insurance companies will tell them they're prescribing too many antibiotics for Lyme patients,” says Smith. “And that they have to stop treating patients or leave the network.”

Some patients are leaving Massachusetts to find doctors to treat the disease.

Jones says so many parents travel to see him because they're frustrated by the strict clinical tests mandated by insurance companies.

“These children's parents are under the impression that the HMO is giving guidelines that prevent diagnosis and treatment,” says Jones.

Statlender's two oldest children tested negative on the ELISA and were told they didn't have it.

“The ELISA was the only tool used to screen our older children,” says Statlender. “We even went to a pediatric chronic-fatigue specialist in New York state to find out what was wrong. We later realized that the ELISA was an unreliable test.”

Stone, the Chelmsford man, also blames a negative ELISA test for his wife's misdiagnosis.

“We took a wrong turn 20 years ago because our doctor relied on the ELISA screening, which was false negative,” Stone says.

But Dr. David Sidebottom, director of Infectious Diseases at Saints Memorial Medical Center in Lowell, calls the ELISA test an accurate screening tool.

“If anything, (ELISA) may over-identify patients with symptoms that may not be Lyme disease but another condition,” Sidebottom says.

But people like Stone say additional testing is needed, regardless of cost.

“This disease has had a serious emotional impact on the family and taken a huge toll on our marriage,” says Stone.

State Rep. Peter Koutoujian, D-Waltham, chairman of the House Committee on Public Health, said so many people attended the Statehouse hearing that about 70 didn't have time to testify.

“There were hundreds of people at the hearing who complained about a failure of diagnosis, a delayed diagnosis, and inadequate treatment,” says Koutoujian.

He says the state is researching why there is such discrepancy in treatment.

“The failure of diagnosis and treatment is causing the destruction of so many families and lives,” says Koutoujian. “There were some of the most heart-wrenching stories of children asking if they were going to die from Lyme disease.”

Climate Change And Human Health

2005-10-14T14:08:00.000-05:00

New England Journal of Medicine
In 1998, Hurricane Mitch dropped six feet of rain on Central America in three days. In its wake, the incidence of malaria, dengue fever, cholera, and leptospirosis soared. In 2000, rain and three cyclones inundated Mozambique for six weeks, and the incidence of malaria rose fivefold. In 2003, a summer heat wave in Europe killed tens of thousands of people, wilted crops, set forests ablaze, and melted 10 percent of the Alpine glacial mass.

This summer's blistering heat wave was unprecedented with regard to intensity, duration, and geographic extent. More than 200 U.S. cities registered new record high temperatures. In Phoenix, Arizona, sustained temperatures above 100°F (38°C) for 39 consecutive days, including a week above 110°F (43°C), took a harsh toll on the homeless. Then came Hurricane Katrina, gathering steam from the heated Gulf of Mexico and causing devastation in coastal communities.

These sorts of extreme weather events reflect massive and ongoing changes in our climate to which biologic systems on all continents are reacting. So concluded the United Nations Intergovernmental Panel on Climate Change,1 a collaboration of more than 2000 scientists from 100 countries. In 2001, the panel concluded that humans are playing a major role in causing these changes, largely through deforestation and the combustion of fossil fuels that produce heat-trapping gases such as carbon dioxide.

Since 2001, we've learned substantially more. The pace of atmospheric warming and the accumulation of carbon dioxide are quickening; polar and alpine ice is melting at rates not thought possible several years ago2; the deep ocean is heating up, and circumpolar winds are accelerating; and warming in the lower atmosphere is retarding the repair of the protective "ozone shield" in the stratosphere. Moreover, ice cores that are drilled in Greenland indicate that the climate can change abruptly. Given the current rate of carbon dioxide buildup and the projected degree of global warming, we are entering uncharted seas.

As we survey these seas, we can see some of the health effects that may lie ahead if the increase in very extreme weather events continues.3 Heat waves like the one that hit Chicago in 1995, killing some 750 people and hospitalizing thousands, have become more common.1 Hot, humid nights, which have become more frequent with global warming, magnify the effects. The 2003 European heat wave - involving temperatures that were 18°F (10°C) above the 30-year average, with no relief at night - killed 21,000 to 35,000 people in five countries.

But even more subtle, gradual climatic changes can damage human health. During the past two decades, the prevalence of asthma in the United States has quadrupled, in part because of climate-related factors. For Caribbean islanders, respiratory irritants come in dust clouds that emanate from Africa's expanding deserts and are then swept across the Atlantic by trade winds accelerated by the widening pressure gradients over warming oceans. Increased levels of plant pollen and soil fungi may also be involved. When ragweed is grown in conditions with twice the ambient level of carbon dioxide, the stalks sprout 10 percent taller than controls but produce 60 percent more pollen. Elevated carbon dioxide levels also promote the growth and sporulation of some soil fungi, and diesel particles help to deliver these aeroallergens deep into our alveoli and present them to immune cells along the way.

The melting of the earth's ice cover has already become a source of physical trauma. In Alaska, Inuits report an increase in accidents caused by walking on thin ice.2 Ocean warming and Arctic thawing are also spawning severe winter storms and hazardous travel conditions in the continental United States. Although tropical sea surfaces are warming and becoming saltier, parts of the North Atlantic are freshening from melting polar ice and increased amounts of rain falling at high latitudes. Contrasting barometric pressures over changing oceans increase winds and propel storms.

Meanwhile, in the past three decades, widening social inequities and changes in biodiversity - which alter the balance among predators, competitors, and prey that help keep pests and pathogens in check - have apparently contributed to the resurgence of infectious diseases. Global warming and wider fluctuations in weather help to spread these diseases: temperature constrains the range of microbes and vectors, and weather affects the timing and intensity of disease outbreaks.4 Disease-bearing ticks in Sweden are moving northward as winters become warmer, and models project a similar shift in the United States and Canada. The encroachment of human housing on wilderness and reductions in the populations of predators of deer and competitors of mice are largely responsible for the current spread of Lyme disease.

Mosquitoes, which can carry many diseases, are very sensitive to temperature changes. Warming of their environment - within their viable range - boosts their rates of reproduction and the number of blood meals they take, prolongs their breeding season, and shortens the maturation period for the microbes they disperse. In highland regions, as permafrost thaws and glaciers retreat, mosquitoes and plant communities are migrating to higher ground.5

The increased weather variability that accompanies climate instability contributed to the emergence of both the hantavirus pulmonary syndrome and West Nile virus in the United States. Six years of drought in the Southwest apparently reduced the populations of predators, and early heavy rainfall in 1993 produced a bounty of piñon nuts and grasshoppers for rodents to eat. The resulting legions of white-footed mice heralded the appearance of hantavirus in the Americas. The origin of the 1999 outbreak of West Nile virus in New York City remains a mystery, but city-dwelling, bird-biting Culex pipiens mosquitoes thrive in shallow pools of foul water that remain in drains during droughts. When dry springs yield to sweltering summers, viral development accelerates and, with it, the cycle of mosquito-to-bird transmission. During the hot, arid summer of 2002, West Nile virus traveled across the country, infecting 230 species of animals, including 138 species of birds, along the way. Many of the affected birds of prey normally help to rein in rodent populations that can spread hantaviruses, arenaviruses, and yersinia and leptospira bacteria, as well as ticks infected with Borrelia burgdorferi.

Extremely wet weather may bring its own share of ills. Floods are frequently followed by disease clusters: downpours can drive rodents from burrows, deposit mosquito-breeding sites, foster fungus growth in houses, and flush pathogens, nutrients, and chemicals into waterways. Milwaukee's cryptosporidium outbreak, for instance, accompanied the 1993 floods of the Mississippi River, and norovirus and toxins spread in Katrina's wake. Major coastal storms can also trigger harmful algal blooms ("red tides"), which can be toxic, help to create hypoxic "dead zones" in gulfs and bays, and harbor pathogens.

Prolonged droughts, for their part, can weaken trees' defenses against infestations and promote wildfires, which can cause injuries, burns, respiratory illness, and deaths. Shifting weather patterns are jeopardizing water quality and quantity in many countries, where groundwater systems are already being overdrawn and underfed. Most montane ice fields are predicted to disappear during this century - removing a primary source of water for humans, livestock, and agriculture in some parts of the world.

A still greater threat to human health comes from illnesses affecting wildlife, livestock, crops, forests, and marine organisms. The Millennium Ecosystem Assessment of 2005 revealed that 60 percent of the resources and life-support systems examined - from fisheries to fresh water - are already in decline or are being used in unsustainable ways. The resulting biologic impoverishment may have important consequences for our air, food, and water.

Crops are being confronted with more volatile weather, vanishing pollinators, and the proliferation of pests and pathogens. One fungal disease, soybean rust, is thought to have been ushered into the United States by Hurricane Ivan last fall. Warmth and moisture will favor its propagation.

And many habitats are not faring well. Our coastal zones, for example, are in trouble: coral reefs are suffering from warming-induced "bleaching," excess waste, physical damage, overfishing, and fungal and bacterial diseases. Reefs provide a buffer against storms and groundwater salinization and offer protection for fish, the primary protein source for many inhabitants of island nations. One reef resident, the cone snail, produces a peptide that is 1000 times as potent as morphine and that is not addictive. We may never know what other potential treatments will be lost as reefs deteriorate.

All in all, it would appear that we may be underestimating the breadth of biologic responses to changes in climate. Treating climate-related ills will require preparation, and early-warning systems forecasting extreme weather can help to reduce casualties and curtail the spread of disease. But primary prevention would require halting the extraction, mining, transport, refining, and combustion of fossil fuels - a transformation that many experts believe would have innumerable health and environmental benefits and would help to stabilize the climate.

The good news is that we may also be underestimating the economic benefits of the clean-energy transition. When the financial incentives are adequate, renewable energy, energy- efficient and hybrid technologies, "green buildings," and expanded public transportation systems can constitute an engine of growth for the 21st century.

Patients: Lyme disease misdiagnosed, mistreated

2005-10-13T14:03:00.000-05:00

Salem News - MA, USA
One by one they sat before a microphone in cavernous Gardner
Auditorium at the Statehouse yesterday, struggling to condense decades of
misery into three allotted minutes of testimony.

Few succeeded.

About 200 people descended on Beacon Hill for the Joint Committee on
Public Health's third and final public hearing on Lyme disease. For nearly
three hours, from as far away as Florida and Maine, they offered tear-filled
testimonials of how their lives were changed forever by the bite of an
insect no larger than a poppy seed.

"This is the first year I have been physically able to attend high
school because of a long struggle with Lyme disease," said Wenham teenager
Colleen Duggan, a senior at Hamilton Wenham Regional High School. "Instead
of playing sports, attending classes, joining clubs and going to proms, I
have spent my high school years with doctors, visiting nurses, IVs, blood
work and home tutors."

Unanimously, speakers laid at least some of the blame for their
ailments on a medical community deeply divided on the diagnosis and
treatment of Lyme disease and insurance companies they claim are reluctant
to pay for those treatments.

The disease, first identified in this country in 1975 in Lyme, Conn.,
is transmitted to humans and pets by deer ticks. Ticks infected with a
bacterium called Borrelia burdorferi pass the disease on when they bite
through the skin in search of blood.

Early symptoms of infection include a rash that may be in the shape of
a bull's-eye, joint pains, aches and fatigue. That's about all the agreement
there is on the disease.

Most doctors and researchers contend that, if caught early enough and
properly treated with antibiotics, Lyme disease is easily cured and leaves
no long-term symptoms. But a growing number believe the disease is more
pernicious, can infect many organs in the body and leave patients with a
lifetime of problems.

Those patients yesterday resoundingly claimed a wide range of
long-lasting symptoms of the disease, from uncontrolled rage, memory loss
and inability to focus to nausea, debilitating fatigue and cardiac problems.

They also said ticks are often infected with other sicknesses they
transmit along with Lyme disease, including babesia, a tick-borne illness
similar to malaria.

Speakers from Massachusetts also testified they had been unable to
find local doctors willing to accept their suggestions they had Lyme
disease, and they were forced to make appointments with physicians in
Connecticut, New York or Pennsylvania to get relief.

"No one should have to leave Massachusetts to find accurate testing
and treatment," said Linda Putur of Hamilton.

Putur's husband, Clark, died Oct. 15, 2004. The couple became sick in
2002, and in May of 2003 doctors at Massachusetts General Hospital
attributed Clark Putur's symptoms to amyotrophic lateral sclerosis, or Lou
Gehrig's disease. Putur's death certificate listed his cause of death as
both ALS and Lyme disease, Linda Putur said.

"As we approach the one-year anniversary of Clark's death, it is with
hope that our story can help create change in this state," she said.

State Rep. Brad Hill, R-Ipswich, was a leader in calling for the
legislative hearings. He had two questions for the committee yesterday:

"How can Massachusetts be a leader in the medical world and not be
able to diagnose Lyme disease?" he asked. "How can Massachusetts be a leader
in the medical world when its citizens are forced to cross state lines to
get proper treatment?"

Difficult choices

Putur's assertion that Lyme disease mimics ALS, multiple sclerosis and
Parkinson's disease was echoed by numerous speakers. Several testified
they'd not only been told they had MS, they'd been given steroids to treat
it. There is concern among patients and physicians that steroids, which
suppress the immune system, are a dangerous prescription for an infectious
illness such as Lyme disease.

Linda Putur's treatment with antibiotics was more successful than her
husband's, and her disease went into remission last May. But she said in an
interview yesterday she feels symptoms returning, creating a problem other
speakers mentioned frequently yesterday.

"Do I go to Pennsylvania and lay out all that cash, on a limited
budget?" she said. "That's what I struggle with."

But she's not willing to gamble her children's health.

"We have an appointment tomorrow for blood work in Dr. Jones' office
in New Haven, Conn.," Putur said in her testimony. "I am having both
children tested."

Dr. Charles Ray Jones was cited by many speakers yesterday as a "hero"
in the field of pediatric Lyme disease treatment. It was the stories of
children, no matter how old, struggling with the disease that were the most
dramatic moments yesterday.

Salem's Doris Gilberg said her 42-year-old daughter is house-bound and
bankrupt, unable to sleep at night or remain awake in the day, and
hyper-sensitive to light, sound and smells. She and her husband have had to
dip into their retirement savings to care for their daughter, she testified.

Janice Urbanski of Boxford said her son Christopher, 9, told her three
years ago the only thing he wanted from Santa for Christmas was to get his
memory back.

"It breaks your heart," Urbanski said.

And one of the younger speakers summed up what the audience hoped
would come out of the public hearings - quick action.

"Please don't leave this problem to my generation to solve," Duggan
said. "We will if we have to, but far too many people will become sick and
have stories like mine if you don't act now."

What's next?

Patients yesterday told the Joint Committee on Public Health they hope
three things will come from their testimony:

* Bay State doctors will be told they must comply with the Centers for
Disease Control instruction that Lyme disease should be diagnosed by its
symptoms, not blood tests. Speakers said too many doctors won't do that,
despite the fact that the most common blood test for Lyme disease is known
to be only 60 percent accurate.

* Insurers will be forced to recognize the extent of what some
speakers called an "epidemic" and pick up more of the cost of treatment.

* Doctors will get more education about the whole range of symptoms
the disease can produce, to ensure earlier diagnosis. Early treatment is the
single best way to prevent long-term health problems, they said.

Fall warning

With fall coming on and leaves dropping, several people attending
yesterday's hearing said it's vital to keep kids out of leaf piles, a
favorite hiding spot for deer ticks. They also underscored the importance of
checking the bodies of anyone who has been out in any area where ticks might
be present from head to toe.

What is Lyme disease?

* An infection caused by the bacterium Borrelia burdorferi that is
passed to humans (and pets) by infected deer ticks. The disease is prevalent
in areas with high deer populations, including the North Shore.

* Initial symptoms include a rash, often in the shape of a bull's-eye,
at the site of the bite. The rash usually appears one to two weeks after
infection and lasts three to five weeks.

* The rash is usually accompanied by flu-like symptoms, including
joint pain, chills, fever and fatigue.

* Untreated, the disease can leave patients with severe headaches,
arthritis, cardiac abnormalities and mental disorders.

* The symptomatic rash will appear in 90 percent of all infections and
is the most conclusive early symptom. Blood tests during the first 30 days
of infection are unreliable.

* If caught early, the disease can usually be treated with oral
antibiotics. In later stages, intravenous antibiotics may be prescribed.

* If you're going into areas where ticks may be prevalent, spray your
skin and clothing with products containing DEET, according to the
manufacturer's instructions. Ticks usually attach themselves to legs or
feet, then climb upward. The back of the knee, groin, navel, armpit and nape
of the neck are favored spots, and the entire body should be checked after
returning home.

* Symptoms that would now be diagnosed as Lyme disease first appeared
in Europe in 1883. It got its name after it was identified as the source of
an outbreak of juvenile arthritis in Lyme, Conn., in 1975.

Lyme disease sufferers urge doctor education

2005-10-13T08:56:00.000-05:00

Cape Cod Times - Hyannis,MA,USA
BOSTON - In sometimes tearful testimony, dozens of Lyme disease sufferers
and others urged lawmakers at the Statehouse yesterday to legislate ways for
more doctors to correctly diagnose and treat the often devastating disease.

Some of the more than 250 people at the hearing hobbled into Gardner
Auditorium with canes, dragged intravenous antibiotic drip poles, or leaned
on the arm of a supportive friend.

Many told of having to travel to doctors in New York and Connecticut for
correct diagnosis and treatment, only to find that their insurance would not
cover it because they had traveled out of state. They told of years of
suffering from muscle pains, insomnia, fatigue, short-term memory loss and a
host of other problems.

One woman said her son's confusion and inability to concentrate in school
cleared up after he was treated for Lyme disease by New Haven pediatrician
Dr. Charles Jones. She said her son's doctor in Massachusetts had refused to
prescribe antibiotics for her son, but did not hesitate to offer him a drug
for hyperactivity and attention deficit.

Members of the state's Joint Committee on Public Health, including Rep.
Shirley Gomes, R-Harwich, and Rep. Cleon Turner, D-Dennis, also heard
repeated requests to find ways to create an environment within the state
that is safe for doctors to prescribe antibiotic therapy - sometimes for
years - for infections that have not been diagnosed in the early stage and
have become chronic.

A battle is raging in the medical community over whether Lyme disease is
overdiagnosed and overtreated. On one side are major medical organizations
such as the Infectious Diseases Society of America and the federal Centers
for Disease Control and Prevention that question whether Lyme disease can be
diagnosed without clear test results, and whether it can become a chronic
condition if not caught early.

On the other side are the growing numbers of Lyme disease sufferers and a
small number of doctors and researchers who claim the condition must be
diagnosed based more on clinical symptoms than on what they claim are
imperfect tests.

Three physicians - all from out of state - testified before the committee on
the legitimacy of late-stage Lyme disease and the valid treatment with
long-term antibiotics.

''The evidence is incontrovertible: When (people with Lyme disease) are
treated early, they do well, if not, they don't do so well,'' said Dr. Brian
Fallon, a Columbia University researcher and director of the Lyme Disease
Research Program at the New York State Psychiatric Institute.

But the Infectious Diseases Society of America, in particular, has
questioned whether late-stage Lyme disease is an actual medical condition.
It has taken a strong stand against states making laws to force insurance
companies to pay for long-term antibiotics. In a June 28 letter to Gov.
Edward Rendell of Pennsylvania, where lawmakers are considering a bill to do
just that, society president Dr. Walter Stamm urged opposition.

''Legislation should not be the approach to address controversies in the
clinical diagnosis and treatment of medical conditions,'' he wrote.

But Public Health Committee Chairman Peter Koutoujian of Wal-tham said
yesterday many legislators say they can no longer ignore the tales of
constituents who have had to travel out of state where doctors have
practices that almost exclusively diagnose and treat Lyme disease.

Koutoujian said the committee will consider filing legislation.

Gomes yesterday said it was ''absolutely ridiculous for a state that has the
medical institutions we do'' to have so few doctors who are literate in Lyme
diagnosis and treatment.

''Eleven years ago, people were telling me they had to go out of state to
get treated, and I'm still hearing that,'' she said.

A group of about 20 Cape residents missed the deadline to sign up to speak
to the committee, after a bus they had chartered failed to show up and they
had to drive to Boston in their cars. But Constance Bean of Harwich did get
to tell the committee her story. She said she was bedridden for five years
with terrible joint pain from an undiagnosed Lyme condition and recovered
only after going to one of the only doctors in the state who will treat
late-stage Lyme disease, Dr. Samuel Donta of Falmouth and Boston.

Bean, who said she has a master's degree in public health and has written
six books on health, said she would like the Legislature to mandate
physician education in Lyme disease in medical schools and in continuing
education requirements.

Michelle Bosch of Falmouth also made the trip to Boston to advocate for
better doctor education.

''The doctors need to be the first line of defense on this, but they're
not,'' said Bosch, who said she suffered from Lyme for 11 years before being
diagnosed, and it was harder to endure than a bout with cancer.

High school field hockey: Newton's Miller overcomes adversity

2005-10-13T08:53:00.000-05:00

New Jersey Herald - Newton,NJ,USA
Amanda Miller's joints ached at the knees and elbows.

Her breath was short. Her muscles weak.

At an inopportune time, the symptoms surfaced again.

It was the biggest game in Newton's young field hockey season, and the sophomore found herself in the worst place imaginable, on the bench, exhausted from the Lyme Disease that was attacking her body.

She couldn't last the full 60 minutes because the infection limited her stamina. So Miller watched helplessly from the sideline as her team allowed the game-winner with nine minutes remaining.

"It was horrible," Miller said of the September loss to Hackettstown. "All I could do was sit there and watch us lose.

"I couldn't do anything."

It was a low point in Miller's heroic season, but also an example of her dedication.

Miller calls field hockey, "the most important thing in my life right now." It's her ticket to a college scholarship, a passion that defines everything.

Those aspirations appeared in jeopardy when she was diagnosed in August with Lyme Disease, an infection generally spread through tick bites. Even when treated early, it can lead to "severe fatigue that is prolonged and very debilitating," according to the Center for Disease Control.

The symptoms, which also include muscle pain and arthritis, "are often intermittent, lasting from a few days to several months and sometimes years."

Faced with these possibilities, Miller broke down.

"I was devastated," she said. "I cried for two hours straight.

"I was scared I was never going to play again. I thought none of the colleges were going to look at me."

There were times during the season when Miller considered giving up. The disease compromised her speed and endurance to the point she felt like a liability to her own team.

Her timed mile in preseason was significantly slower than last year. She was humbled by circumstance, even dropped to junior varsity for one practice match.

Miller said her most discouraging moment came in her first scrimmage. With the score tied late, she could not get back on defense as an opponent scored the game-winner off a corner.

"I was so exhausted," she said. "I kept pushing but I was just out of energy.

"I thought it was my fault. I thought everybody improved and I was terrible. I thought I was so far behind that I was hurting the team."

That was around the time Miller saw a note left at home by her father. It was an inspirational message that asked her to "Show them who Amanda Miller is. Show them you're a fighter."

Miller heeded her father's advice, and battled Lyme Disease like it was a loose ball at midfield. Nothing was going to stop her field hockey dreams.

She showed up for every preseason practice and game, even on mornings when the sickness was overwhelming. She overcame setbacks and a slow start to become an integral part of Newton's high-powered offense.

"Sometimes my body was hurting so much, I couldn't get out of bed," she said. "All preseason it was horrible. I was in a bad mood all the time.

"Every morning I had to tell myself that I could do it. All I ever wanted to do was sleep."

Instead of sleeping, she's been scoring. Miller has five goals in her first year on varsity, playing side-by-side with the Sussex County Interscholastic League's all-time leading scorer, Heather Connelly.

"It's really cool playing with Heather," Miller said. "I've learned so much from her."

Miller's symptoms have subsided in recent weeks, and she is making up for lost training by running on weekends. Her prescribed course of antibiotics is almost complete and she is looking forward to being healthy by state playoffs.

And when Connelly graduates this year with well over 100 career goals, Newton will be looking for someone to fill the scoring void.

Miller could be that next superstar. Although she hasn't displayed the same finishing knack quite yet, her determination has shown she's capable of anything.

"I think the best word to describe Amanda would be perseverance," Newton coach Lisa Bechtel said. "Perseverance."

Better detection, treatment of Lyme disease sought

2005-10-13T08:50:00.000-05:00

MetroWest Daily News - Framingham,MA,USA
Russell Donnelly and Sheila Statlender delighted in having "Bambi in their back yard" until medical tests confirmed -- following years of misdiagnosis -- their kids' headaches, tremors and attention problems were caused by Lyme disease.
The couple who live in wooded south Framingham joined fellow Lyme disease sufferers yesterday in calling on lawmakers to force the medical community in Massachusetts to improve detection and treatment of the disease spread by deer ticks and rodents.
"We really believe that Lyme is reaching epidemic proportions, if it hasn't done so already across the state," Statlender said after addressing the joint Public Health Committee.
Hundreds of people affected by Lyme disease from towns including Norwood, Wayland and Sudbury came to the oversight hearing.
Lyme disease increased five-fold in Massachusetts from 1991 to 2001, said state epidemiologist Alfred DeMaria. Approximately 1,500 people in Massachusetts were infected last year alone.
"It's an increasing ... problem and I don't think it's getting the attention it deserves to get," DeMaria said.
While the disease was found mainly on Cape Cod and the islands 20 years ago, DeMaria said it is emerging in pockets of the state including MetroWest, where deer populations are thriving.
Lyme disease often causes a rash and flu-like symptoms early on and can affect the nervous system, heart and joints. If not treated properly, it can lead to disabling neurological problems. The disease for which there is no vaccine is often treated with antibiotics.
Lyme disease first struck Donnelly and Statlender's oldest son, Zeb, in 1996. The younger of two children later became sick and the family members learned about controversy in the medical community over diagnosing and treating the sometimes misdiagnosed disease.
Despite tests showing their increasingly ill three children did not have Lyme disease, Donnelly and Statlender pushed for a test their kids had not been offered, and in 2002 learned Lyme disease was the culprit.
Yesterday Donnelly and Statlender's middle child, 18-year-old Maia, told lawmakers how years of intravenous antibiotics have helped her gain more control over her life.
Her eyes no longer hurt and her twitching has subsided, the slim brunette said.
"Now I go to the record store and I don't forget what I went there to buy," Maia Donnelly said.
Statlender, who also has Lyme disease, and other sufferers said most doctors and insurance companies in state follow a protocol for diagnosis and treatment that is too restrictive, while they should be following more comprehensive guidelines.
Thus, the sufferers said, Lyme disease is, at times, left undetected in its early, treatable stages and insurance companies are denying coverage.
Yet some doctors yesterday said Lyme disease is at times over-diagnosed and over-treated by doctors using methods not subject to scientific scrutiny.
The Public Health Committee is gathering information on Lyme disease before crafting legislation to stem its spread in the state, said committee co-chairmen state Rep. Peter Koutoujian, D-Waltham, and state Sen. Susan Fargo, D-Littleton.

Lyme disease victims to testify at Statehouse

2005-10-11T14:14:00.000-05:00

Salem News - MA, USA
Hard to get, easy to diagnose, easy to cure. That's one school of thought on Lyme disease.

Those who have suffered infections that went undiagnosed for years have a different take on it.

"We say it's easy to get, hard to diagnose and hard to cure," said Wenham's Kay Lyon, whose family of four all suffer lingering effects of the disease.

Lyon is one of about 40 local people affected by the disease traveling to the Statehouse tomorrow morning to testify before the Joint Committee on Public Health. It's the third and final in a series of hearings called by state Rep. Brad Hill, R-Ipswich.

Hill said information gleaned from the hearings will be used to recommend legislation aimed at getting better and faster diagnoses of infection, among other things.

"The tests currently used don't always pick it up the first time," Hill said. "We might recommend more money for our state labs for better testing."

Some also see the hearings as an overdue wake-up call.

"There is a sense the Department of Public Health is not addressing it (Lyme disease) as feverishly as we would like them to," Hill said.

Lyon would likely call that an understatement.

The bacterium that causes Lyme disease, Borrelia burgdorferi, is transmitted to humans by deer ticks. Lyon believes she was infected in 1975, when she was working at an animal shelter in Boston.

She had what would now be called classic symptoms of Lyme disease: a rash where she was bitten by the tick, fever, joint pain.

"But no one knew about the disease then," Lyon, 49, said.

Some doctors and many patients believe Lyme disease can also cause psychoses and depression, and Lyon said she fought suicidal thoughts throughout her 20s.

When her daughter, Meredith, was 9, she also began exhibiting typical signs of Lyme disease infection. Although no doctor could make an accurate diagnosis at the time, Lyon was told Meredith would not live. The girl missed all of the third and fourth grade because she was delusional and suicidal.

Lyon became convinced Lyme disease was at the root of the problem, and when she heard about a doctor in New Haven, Conn., who was successfully treating children with the disease, she made an appointment.

That doctor eventually prescribed a regimen of antibiotics that brought the disease under control. Lyon said her daughter is now a normal 16-year-old, though she continues to take antibiotics.

"She's doing great," Lyon said. "She's on the swim team and once in awhile she even makes the honor roll."

Lyon believes she passed the disease to her daughter and her son during pregnancy - a view that isn't widely shared in the medical community - but she's used to being told she's wrong.

She's not sure what will come out of this week's hearing.

"You're talking to a cynic," she said, but admitted she's more optimistic than she was a year ago and thinks public attention will have at least one benefit.

"The medical community is not coming around, but hearings like this get the media involved, and that makes patients feel empowered to demand treatment," she said.

Mystery Illness Baffles Doctors; Frustrates Patients

2005-10-11T09:58:00.000-05:00

Bayinsider - Oakland, CA
Is an unknown disease hitting the Bay Area or is it just a case of mass delusion? If you ask intensive care nurse Cindy Casey she'll tell you that the mystery disease is very real and very painful.

Casey is one of at least 150 Bay Area residents battling the illness that is characterized by lesions and strange string-like fibers.

"It sounds really strange, it's kind of understandable why people don't believe us, because it sounds so weird," Casey said. "The lesions start out as bumps that are itchy, little round raised bumps. The fibers are quite alarming."

When she turned to doctors for help, her frustrations began to mount. Casey said dermatologists at her own hospital suggested she was mentally ill.

"It sounds so bizarre to them that they take the quick way out and say this can't be, you've got to be delusional or making this up," she said.

Susan Bishop of Santa Rosa has a similar story.

"It's the overall pain I have every day, my joints hurt," she said. "

For some, the pain and frustration simply gets to be too much. That was the case, friends and family say, for Dillon King of Soquel. Last month, friends and family eulogized the 37-year-old former medical assistant after he committed suicide.

"It was really so depressing the hardest thing was seeing him just get worse all the time," said Wendy Augason, King's mother.

King's fiancée -- Elizabeth Strong -- says she's certain he picked up some kind of weird infection and that she's now beginning to show the same symptoms.

"It started as a small sore and kept spreading," she said. "I had doctors tell me that basically, it was delusional, then because it was the two of us with it we were feeding on each other, and egging each other on."

KTVU broke this story last year and now we've learned more than 1,200 people nationwide say they have the same skin lesions and bizarre fibers. Ironically, most are in the medical profession. Adults as well as children have it and it may be contagious.

Evidence is beginning to mount linking this syndrome to Lyme Disease from tick bites.

"The population of people with Lyme Disease believe this is another infection that travels with the Lyme organism," said Dr. Jennifer Choate, a hematologist who helped treat Dillon. "It makes sense because it is in that group we are seeing this pattern."

Marin microbiologist Jenny Haverty has also be studying the mystery malady.

"I accepted specimens from four different people in four different counties in the Bay Area, and I looked at them very carefully over and over again under the microscope," she said. "The colors and shapes of the fibers of each individual were very, very similar."

Tests on similar fibers taken from Bishop's skin and those of several other patients in the Bay Area show them to be tiny tubes of protein. But how and why the filaments are formed remains a mystery for now.

Shining a light on Lyme disease

2005-10-11T09:54:00.000-05:00

Roanoke Times - Southwest Virginia
Four women in the Roanoke area talk about the struggles they've had with Lyme disease, including getting doctors to properly diagnose them.

If Amy Pace had not run into Julia Collins at the Roanoke Natural Foods Co-op one day earlier this year, it might have taken her much longer to figure out what was wrong with her.

For about two years, the former personal trainer had endured severe headaches, swollen glands and extreme fatigue.

"When you have two little kids, you expect to be tired," said Pace, who is 34 and lives in South Roanoke.

Then Pace started to run a fever and developed severe joint pain. She heard ringing in her ears, started slurring her words, and developed what she calls "brain fog."

Pace had consulted with six Roanoke Valley doctors about her illness. Only one had her tested for Lyme disease, and the test came back negative.

"I never considered that I had Lyme disease," Pace said.

But Collins, 44, knew about Lyme, because she'd also spent years trying to figure out what was wrong with her before she was diagnosed with the disease. She and Pace discussed their symptoms. Collins recommended Pace see her doctor in Maryland.

Like Collins and other people in a growing local word-of-mouth network, Pace has since been diagnosed with a chronic form of the illness. She, Collins, and two other Roanoke Valley women interviewed for this story -- Cindy Courtright and Kim Mackey -- say they have spent years and tens of thousands of dollars consulting doctors and getting medical tests before finally being diagnosed with the condition.

Between them, they were told they had a virus, or fibromyalgia, or chronic fatigue syndrome, or multiple sclerosis, that they might be depressed, or in Mackey's case, that it all could just be in her head.

Pace said she initially kept working with doctors' diagnoses but wasn't getting any better. She said she always felt there was something else underlying her symptoms.

What is striking about the women interviewed for this story is how much they have in common. They were all healthy young mothers who initially attributed their symptoms to recently having given birth or to post-partum fatigue.

Pace and Courtright, who is 40, were living in the Roanoke region when they were diagnosed; Collins, who now lives in South Roanoke, developed symptoms while living in Philadelphia. Mackey, 37, first started having medical problems when she lived in Connecticut.

Local concern about Lyme disease seems to be growing. Pace estimates that she's gotten calls about Lyme from at least 10 people who think they have it or who have already been diagnosed with it.

Lyme disease is the most common vector-borne infection in the United States, according to the U.S. Centers for Disease Control and Prevention. That means it is the most common infection from ticks or insects.

But there appears to be a disconnect between anecdotal evidence about the prevalence of Lyme cases and data from the Virginia Department of Health. And the diagnosis of Lyme already has caused some controversy and spurred the creation of an advocacy group in Northern Virginia.

According to data from the health department, just six cases of Lyme disease were reported in Southwest Virginia in 2003, the last year for which figures are available. A total of 195 cases were reported statewide that year.

Reported cases of Lyme disease have generally trended upward during the last decade, from 131 cases in 1994 to 195 cases in 2003, according to health department data.

Lex Gibson, an epidemiologist with the Roanoke and Alleghany health districts, pointed out that diseases are often under reported to the health department. He also pointed out that in the case of Lyme, sometimes only one test -- the ELISA test, short for enzyme-linked immuno assay -- is done. And he said it is not a very good test.

And the cases of people who were diagnosed with Lyme outside Virginia -- as were the women in this story -- were likely never reported to the Virginia Department of Health.

Dr. Kevin Kelleher, a family physician with Cave Spring Family Practice, said Lyme is still relatively rare in the Roanoke region. It originated in Connecticut and is common in the northeastern United States, but has been drifting into more areas, Kelleher said.

Lyme disease also can be difficult to diagnose for several reasons, Kelleher said. Fewer than 60 percent of people who are bitten by a tick and get Lyme disease actually develop the classic bull's-eye rash that is a common symptom of the disease, he said.

"What you're left with is someone with generalized flu symptoms, so that can fool us right off," Kelleher said.

The second problem with diagnosing Lyme disease is that very few people actually remember getting bitten by a tick, Kelleher said. And the third problem is that the testing for Lyme isn't highly specific, he said.

Right off the bat, the ELISA test misses 10 percent of the cases, Kelleher said. Another quarter of the cases register false positives, he said.

The second test for Lyme, called the Western blot test, is more specific, he said. But because both tests measure antibodies, sometimes the tests are not accurate when they are administered too soon because the antibodies have not developed enough to register a positive result, Kelleher said.

He said he think doctors should do both tests.

"The problem is, there are a lot of physicians who don't," Kelleher said.

Meanwhile, Lyme diagnosis has already generated controversy in Northern Virginia. Leila Zackrison, a doctor in Alexandria, went before the state medical board on allegations that she misdiagnosed Lyme in three patients, the Richmond Times-Dispatch reported last week.

In one case, Zackrison allegedly diagnosed one patient with Lyme and prescribed 12 weeks of antibiotics and a catheter to the patient, despite a lack of supporting evidence and testing that contradicted the presence of Lyme, the Times-Dispatch reported. The patient got a second opinion, and was diagnosed with fibromyalgia and malnourishment, the Times-Dispatch reported.

The state medical board cleared Zackrison, finding that while the care was not optimal, there was no clear evidence of a violation of law, the Times-Dispatch reported.

Life after a diagnosis

When Lyme disease is detected in the early stages, it can be treated with an aggressive course of antibiotics. But left untreated, Lyme can develop into a chronic condition and compromise people's immune systems.

Since first noticing symptoms such as extreme fatigue, migrating arthritis, and back and knee pain in 1997, Collins also has been diagnosed with heart problems and breast cancer, which she attributes to her weakened immune system.

"We look healthy," said Collins, who is the mother of two sons, Clayton, 8, and Carson, 6. "I think that's another reason the diagnosis is messed up a lot."

Lyme has turned Collins' life -- and those of the other three women interviewed -- upside down, from medical bills to discussions in some cases about whether to have more children when they are still sick with Lyme.

"It affects every system, everything in the body," said Cindy Courtright, who is a former competitive triathlete and nurse in the labor and delivery unit of Carilion Roanoke Community Hospital.

Courtright, who lives at Smith Mountain Lake, now must nap several times a day, administer antibiotics through has an intravenous tube into her chest, and often has to rely on relatives to care for 3-year-old son, Johnny.

"Not being able to take care of my child has been the hardest part," Courtright said.

Courtright, Julia Collins, Kim Mackey and Amy Pace now go to doctors in other states they refer to as "Lyme-literate." Between them, they've traveled to Nevada, Colorado, Long Island, Maryland and Seattle, for medical treatment. They share information about treatments such as antibiotics, supplements, and hyperbaric chambers.

But the women are also concerned that the testing for Lyme is unreliable and that much of the medical community does not understand the disease. They think doctors should diagnose patients not only on test results, but on their symptoms.

"There are a lot of doctors who believe Lyme is a short disease," said Mackey, who was diagnosed with Lyme in Connecticut and moved to Roanoke County about three years ago.

"Lyme doctors understand it to be a long-term, ongoing infection if you don't catch it right away," she said.

County's health profile shows an increase in Lyme disease

2005-10-10T08:05:00.000-05:00

Chambersburg Public Opinion - Chambersburg,PA,USA
In the handful of years since Doug Mitchell was diagnosed with Lyme disease, he has become a self-styled expert on the painful and weakening affliction.

One of his observations: The disease is a crafty mimic, often resembling more common ailments, such as arthritis or the flu.

With this knowledge often comes a diagnosis change, he said.
Mitchell knows the enemy, and when he heard the reported cases of Lyme disease in Franklin County had spiked in recent years, he did not raise an eyebrow.

"That doesn't surprise me at all," the Fort Loudon resident said. "It's underestimated. Across the country, more people are getting diagnosed because they never even knew they had it. Doctors have been fooled enough times."

Mitchell estimates he's lost roughly 75% of his former strength to the disease, and he will have to take high-grade antibiotics the rest of his life to keep it in check.

The state Department of Health recently released its 2005 health profiles for all 67 counties and the state as a whole.

Each year's profile is composed of information collected from previous years.

Lyme disease is one of several increases that stand out from the 2004 Franklin County profile.

The information for this year's profile on Lyme disease was collected from 2001 to 2003, and lists 42 cases.

Data from last year's profile were collected from 2000 to 2002, and list 29 Lyme diseases cases.

One possibility for this might be the area's lack of cold winters in recent years, which would have killed more deer ticks, which carry the disease, Mitchell said.

Also increasing in this profile are reported cases of the sexually transmitted disease chlamydia — 656 were reported between 2000 and 2002, while 745 cases were reported between 2001 to 2003.

Reported drug and alcohol cases flip-flopped. From mid-2003 to mid-2004, 180 drug abuse cases and 123 alcohol abuse cases were reported.

From mid-2002 to mid-2003, 138 drug abuse cases and 166 alcohol abuse cases were reported.

Licensed or approved beds in area nursing homes took a sharp decrease. In 2002, beds numbered nearly 1,400, but in 2003 this dropped to 1,237.

Between these years, one transitional care unit in Chambersburg closed, taking away 18 beds, and some facilities lowered their capacity. Quincy United Methodist Home decreased from 195 to 169 beds, and South Mountain Restoration Center shrunk from 376 to 260 beds.

Other numbers stayed mostly the same.

Deaths from diabetes mellitus totaled 170 from 2000 to 2002, and 173 from 2001 to 2003.

From 2000 to 2002, heart disease contributed to 1,038 deaths, and from 2001 to 2003 it took 1,050 lives.

Cancer deaths totaled 935 from 2000 to 2002, and 908 from 2001 to 2003.

These last two life-takers were the biggest killers in the county respectively, the same rank they held in the 2004 profile.

But the county is no anomaly, and heart disease and cancer can be found claiming lives across the nation, said Jan Crudden, executive director of Healthy Communities Partnership of Greater Franklin County, a group that promotes health and wellness.

Modern health care has changed from fighting diseases such as cholera to dealing with the damage people can do to themselves through choices, including smoking cigarettes, she said.

"It's a realization that people are impacted by their behavior, and then modifying that behavior," she said.

Man loses battle with Lyme disease

2005-10-09T09:54:00.000-05:00

Tallahassee Democrat
On the Internet, he was known as Dr. Mike even though he wasn't a physician.

Mike Thomas, 48, was a supervisor of water utilities for the city of Tallahassee.

After being diagnosed with amytrophic lateral sclerosis, also known as Lou Gehrig's disease, he became an avid researcher of the disease.

His research led him to China to undergo experimental treatment in December, but he died Wednesday at home of Lyme disease.

In Beijing, Thomas met other patients from around the world who turned to him for information. The BBC even featured him on a show about the experimental treatment he received in China.

On Sunday, he was at his computer reading e-mails from overseas, said Juhan Mixon, Thomas' best friend.

"No one expected it to happen quite as quickly as it did," said Candace McKibben, the pastor who is presiding over the funeral 2 p.m. today at the chapel of Bevis Funeral Home of Tallahassee.

In August 2003, Thomas was diagnosed with Lou Gehrig's disease, a fatal condition that causes motor neurons to deteriorate and muscle movement to diminish. Doctors say Thomas and the 30,000 others in the United States who have it usually have three to five years to live.

In the fall of 2004, Thomas couldn't wiggle his toes or raise his right foot. So Mixon helped Thomas raise $30,000 needed to travel to China to get millions of olfactory ensheathing glia cells from second-trimester aborted fetuses inserted into his brain and spinal cord in hopes of stimulating the other cells to work. The procedure is still in the experimental stages.

Thomas and his wife, Kim, went to Beijing Oct. 31, 2004, and returned Dec. 2.

When Thomas came back, he could walk and stand without a brace, Mixon said. He was even able to go back to work. In January, his condition deteriorated, and he was soon diagnosed with Lyme disease.

Ticks transport the bacterium that causes Lyme disease. The symptoms include a skin rash, fever, headache and fatigue, according to the Centers for Disease Control and Prevention Web site. If left untreated, infection can spread to joints, the heart and the nervous system.

Thomas was undergoing treatment for the disease, but it was in the late stages when it was diagnosed, Mixon said. Thomas could still walk but had to use a walker.

After extensive research online, Mixon said, Thomas questioned whether he had Lyme disease from the start or whether the diseases were interrelated.

Thomas never found out.

After the China trip, "We were all hopeful that he would get better," Mixon said. "We were hopeful that (if) we could treat the Lyme disease, he would be better."

What if some Lyme isn't really Lyme?

2005-10-09T09:07:00.000-05:00

Telephone Credit Union
By SHAWNE K. WICKHAM

What if the debilitating illness that sickens hundreds of New Hampshire residents every year comes from a different strain of bacteria than the one that causes Lyme disease in other states?

Could that help resolve the ongoing controversy over testing and treatment of an illness that often continues even after patients are treated with antibiotics?

Some medical experts say it's possible.

Dr. Jose Montero, state epidemiologist at the Department of Health and Human Services, said there are many diseases that can cause similar symptoms and even cross-react in diagnostic tests � such as West Nile virus, Eastern equine encephalitis and St. Louis encephalitis, which are all transmitted by mosquitoes.

"It may be in the realm of possibility that something similar may be happening to these particular patients," he said, referring to Lyme disease patients who have chronic symptoms, even after treatment. "It may be that we are missing some other thing that looks similar and causes a similar illness but as yet has not been identified."

Indeed, scientists have discovered that some patients who get Lyme disease also become co-infected � apparently from the same tick bite � with other tick-borne diseases, including babesiosis and erlichiosis. Such co-infections can make diagnosis and treatment more problematic, doctors say.

Different types of Lyme?
Dr. Rex Carr, a Lebanon physician who treats numerous Lyme disease patients, noted there are different strains of the "borrelia" spirochete that causes Lyme disease; Europe sees different strains than the one identified as the cause of illness in Lyme, Conn., he said.

Here's his theory about why some New Hampshire patients test negative for Lyme disease, despite having numerous symptoms of the illness: "There's probably more than one bacteria causing the disease that we're seeing. In other words, it may not be Lyme, Connecticut, Lyme disease, and that's why the disparity in the testing."

He noted several years ago, health department officials in Missouri began tracking an illness that looked a lot like Lyme disease, with a similar rash and flu-like symptoms. But patients tested negative for Lyme disease; the look-a-like illness became known as Master's disease, after the family doctor who first started studying it.

The CDC refers to this new illness as "Southern tick-associated rash illness" (STARI), and attributes it to the bite of the lone star tick in southeastern and south-central states. The agency, on its Web site, notes that a spirochete, distinct from the one that causes Lyme disease, has been detected using DNA analysis.

Different spirochetes
Meanwhile, a study published in an obscure medical journal � Vector-Borne Zoonotic Diseases � in the spring of 2001 reported the discovery of "a species of Borrelia spirochetes previously unknown from North America has been found to be transmitted by Ixodes scapularis ticks." Those are the black-legged ticks that transmit Lyme disease in Eastern states, including New Hampshire.

The study found the spirochete was distinct from the one that causes Lyme disease, but closely related to a group of spirochetes found in similar ticks in Japan. The study found the new spirochete in ticks from Connecticut, Rhode Island, New York and New Jersey.

The study concluded that "further work is needed to determine the potential health significance of yet another zoonotic agent transmitted by this tick species."

Other possibilities
Paul Mead, a medical epidemiologist at the Centers for Disease Control, said he can't rule out the possibility that another bacteria is causing a Lyme-like illness in New Hampshire.

But he said the antibody testing done to detect Lyme disease would "likely" still turn up positive for another strain of the bacteria. "One of the strengths of serologic testing is that it can produce cross-reactions, so if you are infected with a closely related organism you will often test positive," he said.

"Now, is it possible that there's some borrelia which is a very weird mutant and quite a bit different and causing these symptoms? It's possible, but it could also be a bacteria or a virus or any number of other things," he said.

Doctor cleared of misdiagnosing Lyme disease

2005-10-07T07:57:00.000-05:00

Richmond Times Dispatch - Richmond,VA,USA
The state's medical board has exonerated a popular Northern Virginia physician whose treatments for suspected Lyme disease allegedly endangered her patients.

In a decision made public yesterday, the board concluded there was insufficient evidence to support allegations that Dr. Lelia H. Zackrison had misdiagnosed Lyme disease in certain patients and then treated them with prolonged courses of antibiotics and other drugs.

Dozens of Zackrison's patients and supporters showed up this week in Fredericksburg for a hearing on the charges, which involved care for three patients dating back to May 1999.

Zackrison, in support letters and among members of the National Capital Lyme Disease Association, has been portrayed as a target of the medical establishment that argues that some patient symptoms result from conditions not related to Lyme disease.

These "charges are at the heart of the Lyme disease diagnosis and treatment debate," notices sent out by the National Capital group said, urging its members to write letters supporting the Fairfax doctor to the medical board and Zackrison's lawyer, R. Harrison Pledger Jr.

Lyme disease, which can cause severe, recurrent headaches and nerve damage, is most often found in the Northeast but it is believed to be occurring with more frequency farther south. The disease is carried by deer ticks; about 100 cases a year turn up in Virginia but the diagnosis is often uncertain.

In one of the charges, Zackrison allegedly diagnosed a patient with Lyme disease despite a lack of corroborating evidence and tests that conflicted about the presence of the disease. She ordered that the patient have a catheter and undergo a 12-week course of drugs.

But the patient sought a second opinion which resulted in a finding of no Lyme disease, Lupus or reactive arthritis. The patient was treated for fibromyalgia and malnourishment.

The decision yesterday concluded that Zackrison's care for the three patients was not optimal but that there was no clear evidence that there was a violation of state law or regulations. Nor did the allegations involve actual evidence of patient harm.

Neither Pledger nor Zackrison returned calls asking for comment.

Cape Codders to testify on Lyme

2005-10-07T07:55:00.000-05:00

Barnstable Patriot - Barnstable,MA,USA
A bus will take Cape residents concerned about Lyme disease to the Statehouse in Boston Oct. 12 to present personal testimonies on the effects of the malady.

The occasion is what is believed to be the first hearing at the Statehouse on Lyme, according to John Coughlan, director of the Massachusetts Lyme Disease Coalition.

To reserve a seat on the bus, call Nancy at 508-362-3189 or send an e-mail to nbwood@comcast.net.

JHU Expert Warns of Spread of Rocky Mountain Spotted Fever

2005-10-04T23:20:00.000-05:00

Johns Hopkins Medicine
An infectious disease expert at Johns Hopkins who has spent nearly three decades studying the life-threatening, tick-borne infection known as Rocky Mountain spotted fever, warns that the first widespread outbreak of the bacterial disease in Arizona is a growing and dangerous sign of how humans can inadvertently help spread infectious organisms beyond traditional state boundaries.

In an article published in the New England Journal of Medicine, pathologist and microbiologist J. Stephen Dumler, a professor in the School of Medicine, highlights the importance of the recent outbreak in Arizona as the first confirmed cases that could be traced back to ticks carried into the state on feral dogs, an animal group whose population has markedly increased. And, as the number of dogs has increased, so have the number of ticks. A detailed study of this latest outbreak by the Centers for Disease Control and Prevention is featured in the same edition of the NEJM online Aug. 11.

According to Dumler, the disease, most often marked by a telltale spotty rash that appears five to 10 days after the first signs of infection, has been largely confined to the South Central and Southeastern United States, although sporadic cases have been reported in all 48 continental states, mostly North Carolina. (Maryland is among the top 10 states for the disease, with at least 79 cases reported in 2004, up from 19 in 2000.)

The scientist also reports that the number of people infected with Rocky Mountain spotted fever, which is fatal in up to 10 percent of those who contract it, has peaked for the third known time this century, with more than 1,800 cases reported nationally in 2003 and 2004. However, scientists believe the number of unreported cases is much greater.

Dumler's opinion is that growing awareness among physicians about the disease's early signs and symptoms may be the best means of curbing the potentially deadly impact of the disease, which can be effectively treated with specific antibiotics if caught early.

"Rocky Mountain spotted fever is a dangerous and potentially fatal disease, unlike its more widespread cousin, Lyme disease, which is almost never fatal," he said. In the latest study, researchers at the CDC report on 16 cases in which two children contracted the fever and died. "Because its first symptoms are very hard to distinguish from many other illnesses, it is often hard to diagnose unless you are looking out for it," he said.

The first signs of Rocky Mountain spotted fever, the scientist said, are bodywide aches and pains accompanied by headache and a sudden high fever, sometimes as high as 105 degrees. Symptoms may also include sore throat and nausea. The spotty rash, which occurs in at least 85 percent of patients, does not appear until later in the infection and resembles a pinpoint pattern of pink-to-red spots over the entire body, or parts thereof. The rash is also noticeable on the soles of the feet and palms of the hands, where rashes do not usually appear. At this later stage of infection, antibiotic therapy becomes somewhat less effective.

In the CDC-led study, government researchers took blood and skin tissue samples from 16 patients across southeastern Arizona suspected of having the infection. Laboratory tests, including immunohistochemical staining, confirmed that 11 had the disease, while the remaining five were still probable cases.

When the researchers examined the patients' home environments for possible clues to the source of infection, they found fever-infected ticks in all patients' yards. Ticks were found in the cracks of stucco walls on patients' homes, in crawl spaces under these homes and on furniture placed outside for children and pets. All patients owned and had come in contact with dogs with the infected ticks. Four of the patients had a recent history of tick bite.

Tests of the dogs' blood confirmed their infection with the spotted fever bacterium. Feral dogs and brown dog ticks are not a species found naturally in the Arizona region but were introduced to the state as domesticated dogs that moved with their owners into the area.

"This study shows that Rocky Mountain spotted fever can show up in unexpected places, and the study should put physicians on alert for the earliest signs and symptoms of the disease," Dumler said. "Our next step is to develop faster and more reliable tests to detect the disease so that physicians can more readily make a diagnosis and begin treatment as early as possible."

Initial treatment for adults, he said, involves immediate, twice daily 100-milligram doses of the oral antibiotic doxycycline (a version of the common tetracycline) until the patient's fever subsides. Patients continue to take the medication for an additional five days to prevent the disease from rebounding. Infected children would receive the same drug, but at a lower dose.

Rocky Mountain spotted fever is a bacterial disease caused by Rickettsia rickettsii, which can be spread by ticks that carry the bacteria and then bite humans, leaving behind the tick's bacteria-filled saliva. Once inside the body, the infection spreads rapidly, causing inflammation of the blood vessels, shock and the buildup of fluid inside the lungs and brain. The precise origins of Rocky Mountain spotted fever are not known, but the disease is only known to occur in North and South America.

ORIGIN OF SARS IDENTIFIED: BATS, NOT CIVETS

2005-10-03T23:11:00.000-05:00

NEW YORK, NEW YORK - E-Wire
NEW YORK, NEW YORK, Sep. 29 -/E-Wire/-- Scientists at the Consortium for Conservation Medicine (CCM), based at Wildlife Trust, in collaboration with Chinese and Australian colleagues, have discovered that SARS originated in bats, not civets, as once believed.

Dr. Peter Daszak, Executive Director of the CCM and Dr. Jonathan Epstein, Senior Research Scientist and veterinary epidemiologist at the CCM, are contributing authors on the definitive paper, "Bats Are Natural Reservoirs of SARS-like Coronaviruses," published on Thursday, September 29 in Science Express, the online page of Science magazine. The paper also will be published in Science at a later date.

The definitive paper identifies Chinese horseshoe bats as the reservoir for SARS, something other research has only suggested. The team proved it by a far larger sampling than has been completed previously, from numerous sites in Mainland China, including the site where SARS first emerged.

"This important research finding is a major breakthrough for the new field of Conservation Medicine, which is a new discipline that brings together health professionals and wildlife scientists to examine links between human, ecosystem, and animal health," according to Dr. Mary Pearl, President of Wildlife Trust and co-founder of the Consortium, which is based at Wildlife Trust's offices in New York.

"We can now conclusively say that we know the origin of SARS, and like most other emerging diseases (including HIV/AIDS, monkeypox, West Nile virus and avian flu), the virus was transmitted from animals to people," Dr. Peter Daszak explains. "These diseases emerge because of human activities such as wildlife trade and global travel. Anytime you bring multiple species of animals together at high density and mix them with humans, you're setting the stage for pathogens to jump between species and for an outbreak to occur."

Donald S. Burke, Professor of International Health at the Johns Hopkins Bloomberg School of Public Health, says, "Finding the ultimate source of the SARS coronavirus is the epidemiological equivalent of discovering the source of the Nile. The virus circulates in bats, spills into civets, and emerges into humans. Now it should be possible to interrupt that flow."

Dr. Jonathan Epstein led the first collaborative expedition to China in March 2004, to survey bats for zoonotic pathogens, including the SARS coronavirus and Nipah virus. The team collected samples from bats caught in the wild from several regions as well as captive bats from live markets in Guangdong, where SARS originally emerged. Samples were sent to virology labs at the CSIRO, Australia and the Wuhan Institute of Virology in China, to be tested for SARS-CoV and other pathogens.

Dr. Epstein explains, "It's crucial to identify the reservoirs of these emerging pathogens so that we can understand how they emerged, and predict and prevent future outbreaks. Civets were originally thought to be the origin of SARS but most researchers realized that the true wildlife reservoir remained a mystery. Our role was to visit the outbreak site and other areas in China and search for this reservoir. We targeted bats because they are the source of other lethal pathogens that have recently emerged, and are part of the wildlife trade throughout Asia."

Dr. Daszak coordinated the CCM's role in the international collaboration. The research team tested more than 400 bats, representing nine species, six genera and three families, from four locations in China (Guangdong, Guangxi, Hubei and Tianjin) to which the bats are native. The study was completed between March and December, 2004. RNA sequence data, phylogeny and serological evidence showed that a coronavirus (named "SARS-like-coronavirus Rp3", or SL-CoV Rp3, by the team) was found in three species of horseshoe bats (Rhinolophus species) and is the progenitor of both the civet and human SARS CoV.

Dr. Pearl emphasizes the importance of understanding the ecology of emerging diseases, rather than simply blaming wildlife for spreading disease. "Wildlife populations can act as buffers against the spread of disease as well as sources for its emergence. Through providing a better understanding of how pathogens move among species, the field of Conservation Medicine gives us the tools we need to maintain healthy ecosystems that protect people and wildlife."

Lyme disease on rise in NH; risks greater in October

2005-10-02T14:31:00.000-05:00

Union Leader - New Hampshire
There's a bug-related illness that sickens hundreds of New Hampshire residents every year — and many of them go on to suffer long-term complications that can be crippling. And it's not West Nile virus or Eastern equine encephalitis.

October — when so many of us are outside raking leaves, hiking in the woods or just relaxing in the backyard — is one of the riskiest times of the year for Lyme disease. It's when the adult black-legged ticks that carry the bacteria are most active.

And people need to take it more seriously and protect themselves, experts say.

More than 1,100 cases of Lyme disease have been reported to the state health department in New Hampshire in the past decade. Last year alone, 228 new cases of the disease were reported, compared with just 30 cases a decade earlier.

And medical experts say the number of actual cases could be 10 times higher, since the illness is notoriously difficult to diagnose and often goes unreported.

With more than 20,000 cases reported a year, Lyme disease is the most common "vector-borne" illness in the United States. That refers to a disease that is carried from one organism to another by an intermediary; in this case, a tick picks up the bacteria after feeding on an infected bird or mouse, and later transmits it to a human or domestic animal during a bite.

Dr. Elizabeth Talbot, an infectious disease specialist at Dartmouth-Hitchcock Medical Center in Lebanon, is the deputy state epidemiologist. She said Lyme disease is definitely on the increase in New Hampshire.

The highest jump here occurred from 2001 to 2002, when both the number of cases and the incidence rate doubled; 2002 was the peak for Lyme disease reporting, with 262 cases, compared to 129 the previous year.

And the concurrent increase in incidence that year, from 10.33 cases per 100,000 residents in 2001 to 20.5 cases, left New Hampshire with the eighth highest rate in the country.

This year, through mid-September, 140 cases have been reported to the state health department, and officials expect those numbers to rise, since fall historically has been the peak reporting season.

Talbot believes several factors are contributing to the numbers. "I do think there's an increase in disease. We also have improved reporting among clinicians and increased awareness among patients."

Lyme disease is a bacterial infection caused by the bite of an infected tick. Thirty years after a mysterious form of arthritis began showing up in clusters of cases around Lyme, Conn., that's the one fact upon which everyone agrees.

But nearly everything else about the disease —which can mimic other serious illnesses such as multiple sclerosis, Parkinson's disease or Lou Gehrig's disease — remains controversial.

Medical professionals disagree about the appropriate testing, diagnosis and treatment of the disease.

While the Centers for Disease Control on its Web site states that Lyme disease should be a clinical diagnosis — based on a patient's symptoms and physical findings — it goes on to outline a two-step testing process. And patients say as a result, too many New Hampshire physicians use the blood tests to rule out the disease — despite evidence the tests are unreliable, especially in the early stage of the illness.

Long-term Lyme?
Among the most controversial topics: Whether patients who suffer long-term symptoms, even after antibiotic treatment, are actually still infected with the disease organism — as many patient advocacy groups contend — or have an auto-immune condition that is causing their symptoms — as the CDC suggests.

It's a critical question: At issue is whether physicians should continue treating these patients with long-term antibiotics, which can carry risks.

In a public information brochure about Lyme disease, the CDC states, "Longer courses of antibiotics have not been shown to be beneficial in patients who have been previously treated and have chronic symptoms."

But doctors who treat chronic patients with long-term antibiotic therapy report that symptoms do improve, often dramatically, with such treatment.

And that clash between Lyme practitioners and the prevailing medical establishmentoften leaves patients in the middle — and suffering.

While some doctors question the diagnosis of "chronic" Lyme disease, Talbot said she believes "there is more to this disease than we fully understand."

"Many people feel that they have long-term adverse effects from Lyme disease, and I just don't believe they're all wrong," she said. "I think there's something going on. I don't know what it is, but I do believe we will learn a lot more about this disease in the years to come."

Some say there is a growing awareness among the public and the medical community alike. More and more, it seems, everyone knows someone who has Lyme disease.

This past May, the state Legislature passed a resolution calling for more federal funding for Lyme disease research, and increased educational efforts directed toward both physicians and the public. Gov. John Lynch subsequently signed a proclamation for "Lyme Disease Awareness Month."

State Sen. Joseph Kenney, R-Wakefield, spearheaded the effort at the request of two high-school-era friends who have the disease and had trouble being diagnosed and treated. A conference last year in Wolfeboro about Lyme disease drew 250 people — and convinced Kenney of the need for more research and education.

Kenney, who is in the Marine Corps Reserves, is currently serving in Iraq. But in a recent e-mail exchange with the Sunday News, Kenney said he was contacted during his legislative efforts by dozens of New Hampshire residents who either have the disease or know someone who does.

One mother, who had to leave her job to care for her sick child, told Kenney in a letter that Lyme disease "has truly had a devastating and lasting impact on my family." She told of her daughter's progressive loss of motor skills, vision, speech and memory problems, joint pain, depression and nervous system disorders. "These people are suffering and are not crazy," the woman wrote.

Stories like that had an effect, Kenney said.

"We recognized that many people in New Hampshire have contracted Lyme and have had to go outside the state for treatment," he said in his e-mail. "We discovered that we need to do a better job in creating a referral system for people in state."

Talbot said the increase in Lyme disease here could be related to changing ecology, and tied to the host animals for the tick that carries Lyme bacteria: deer and mice. As more of New Hampshire is developed, she said, "It could be humans are in closer proximity to those animals and therefore have more potential contact with infected ticks."

Meanwhile, the number of infected ticks is on the rise as well.

Alan Eaton is an entomologist with the University of New Hampshire Cooperative Extension; he's been studying black-legged ticks, often called deer ticks, for years.

More sickening ticks
Last year, Eaton collaborated with a researcher at Maine Medical Center in Portland on a study to see how many of these ticks actually carry the Lyme bacteria, called spirochetes.

Eaton collected about 50 ticks each in three separate locations: Lee, Durham and Concord. "We knew the incidence of the tick was high, but we wondered how high the incidence of the spirochete was in the tick."

What they found was that more than half the ticks collected in Lee and Durham were infected — "and in the Concord site, it was over 70 percent."

"So what this tells us is that in both of these places, the Seacoast and the Concord site, it clearly has been established for quite some time," Eaton said. And he added that a similar incidence of infected ticks is likely in most of the rest of the state as well.

New Hampshire folks should take notice of those unexpectedly high numbers, especially in October, when adult black-legged ticks are most active, Eaton said. Wearing long pants and tucking them into socks, and using bug repellent, are easy ways to prevent what can become a devastating illness.

"You have it within your power to tremendously increase the odds of your getting it, or tremendously decrease the odds. It's up to you."

And Talbot said the increase in such illnesses as West Nile virus, EEE and Lyme disease should be convincing proof that we need to adopt new routines to avoid bugs, such as using repellents and doing body checks for ticks.

"Just like we brush our teeth every night, it's part of our health culture now that we need to avoid being bitten by insects, whether they're ticks or lice or fleas or mosquitoes."

Wurtzberger dodges the Lyme bullet

2005-09-28T10:38:00.000-05:00

Sleepy Eye Herald Dispatch
The first sign something was wrong was the bulls-eye shaped rash. But when Dylan Wurtzberger began sleeping for 22 hours a day, something was definitely wrong.

"It happened on July 23, and went from there," said Dylan's mom, Sheila.

Soon Dylan was complaining of a stiff neck and a headache. "This from a kid who never has headaches," Sheila said.

"I was sleeping for nine-tenth's of the day, and hardly eating anything," Dylan said last week, after football practice.

Doing some research, Sheila found that Dylan's symptoms fit those of Lyme disease, a bacteria-caused illness spread by deer ticks.

And Dylan had just returned from camping in the woods at Cross LakeŠ

The 12 year old was finally diagnosed with Lyme on Aug. 5, at the New Ulm Medical Center.

"Dylan had several rashes," said Dr. Clifford Wu, the pediatrician who treated Dylan. "That was a sign the Lyme disease was spreading, and had gotten into this spinal fluid.

"At that, we realized the treatment had changed, and he would need I.V. treatment."

Lyme disease affects the skin, joints, nervous system, and heart, among other parts of the body. If Dylan had been left untreated, "he would have been miserable," said Dr. Wu. "He would not have been able to live a normal life."

Wu said that Lyme meningitis "is not a surprising thing to come across. It's the second one I've seen since I've been here in 1999.

"The testing is a whole lot better now than it was, say, seven years ago. But you don't need a test to be treated for it now-the typical rash is enough to start treatment."

Dylan had to go to the New Ulm Medical Center every day for a week for I.V. treatment. Then, on Aug. 11, he had a PICC line put into his hand.

"It went directly to the main vein of his heart," said Sheila. "A home health nurse came over every day after school for three weeks."

"I didn't feel it much. I just felt cold," Dylan said, of the treatments.

On his first day of school, Dylan's classmates were naturally curious about the device in his hand.

"They said, 'How'd you get that?' and 'What's that in there?'" he said last week. "I said I got it from a tick at camp. After the first day, they didn't make a big deal."

When the daily treatments were finished, home health care nurse Rhonda Dahlgren removed the PICC line, and Dylan was free Š free, but careful.

"Watch out for ticks!" he said, asked how he's going to avoid getting sick again.

"Parents do need to be aware of what to look for," Sheila said.

Cases of tick-borne disease double

2005-09-26T17:30:00.000-05:00

NZZ Online
The Federal Health Office has sounded the alarm after a sharp increase in the number of people developing inflammation of the brain following tick bites.

It said this week 141 cases of tick-borne encephalitis (TBE) had been reported in Switzerland by mid August - 55 per cent more than in the same period last year.

The Health Office is recommending that people living in affected areas get vaccinated against the disease, which can kill.

Regional variations are pronounced, with about 96 per cent of this year's cases involving residents of high-risk areas in German-speaking Switzerland.

Canton Aargau has been particularly hard hit, with large increases also reported in the cantons of Lucerne, Zurich and St Gallen.

About half of those who acquired the disease were bitten by infected ticks while on walks in the forest.

"Data is still lacking on why certain areas have been particularly hard hit," said Hanspeter Zimmerman, a Health Office expert. "It is possible that there are more infected ticks, but we do not know."

According to Zimmerman, between about 0.5 and three per cent of ticks are infected. The weather could be a factor in the increase in cases of tick-borne disease, he told swissinfo.

"Activity of the ticks depends on the climate", explained Zimmerman. "They don't like if it is too hot or too dry."
Symptoms

Encephalitis is a medical term for inflammation of the brain.

Symptoms may include severe headache, stiff neck, fever or vomiting, aversion to bright lights, and sometimes a rash. But not all symptoms need be present.

TBE has to be differentiated from Lyme disease, which is also transmitted by tick bites and affects the skin, the joints, the brain and the heart.

Lyme disease, a bacterial infection, occurs far more frequently than TBE.

Whereas the distribution of TBE is localised, Lyme disease occurs throughout Switzerland, according to the Health Office.

Not everyone who is bitten by an infected tick gets ill, says Zimmerman.

"Some people who are bitten don't have symptoms, others have flu-like symptoms. But it can develop into a dangerous illness, for which there is no specific medicine or treatment," he explained.

Between 75 and 80 per cent of those infected require hospitalisation and around one per cent of patients die.
Recommendations

The Health Office is recommending that all residents living in at-risk areas be immunised.

"The vaccine is safe and efficient," said Zimmerman.

An additional concern of the Health Office is that the population in affected regions is insufficiently informed as to the dangers of tick bites.

In addition to being immunised, people in at-risk areas are advised to wear clothing enclosing the arms, wrists and legs when they head into forests or fields.

It is also recommended that they check their body and clothing for ticks after being in the woods, that if ticks are found they are immediately removed, and that the exact time of any tick bite be noted.

Lyme disease symptoms still affect local resident

2005-09-26T17:28:00.000-05:00

www.newstribune.info
It's been almost a year since Carol Cline first told News-Tribune readers her story about her struggle Lyme disease - and she's still getting calls from people who want more information.

"They don't always remember my name, but they remember the article and the disease," she said. "I talk to them about their symptoms and in some cases, they've been diagnosed with other diseases. I give them names and numbers of various Lyme specialists."

Cline, who works as a receptionist at the Mineral County Board of Education, is currently taking in excess of 30 pills a day to battle symptoms of the disease, which is an infectious, immune mediated multi-symptom disease. According to Lyme disease Web sites, the bacteria which causes Lyme is transmitted to humans by the bite of a deer tick.

Cline first started seeing symptoms in May 2002. After visits to the emergency room and 14 different doctors, she finally found a neuromuscular forum online which listed a Lyme disease Web site which listed her symptoms.

After visiting a Lyme specialist in Washington, D.C., she started on antibiotics in February 2004. She has been on the protocol of more than 30 pills a day since May.

"I'm currently on 1,000 mg of Ceftin and 200 mg. of minocycline, which are antibiotics," she said. "I have a B12 shot once a week and four nystatin tablets (an anti-fungal) every day. There are also numerous vitamins and supplements."

She said treating the disease is expensive, as the Rocephin IV antibiotic is $200 a day.

"That's just for the antibiotic. That didn't include the PICC (peripherally inserted central catheter) line in my bicep and I had to have a nurse visit once a week to change the PICC line dressing."

She's also had more than 200 bicillin shots, which are approximately $50 each.

"That's $10,000 right there in bicillin," she said.

The main symptoms she's still experiencing are her eyes are still sensitive to bright light and she still has a buzzing in her legs and feet.

"I'm sensitive to bright sun, even bright overcast," she explained. "It (Lyme disease) is particularly difficult to eradicate from the eyes because it's difficult for the antibiotics to cross the blood-brain area."

She said the buzzing runs along the nerve pathways in her legs and feet, although when she keeps busy, she doesn't notice it as much.

"It's hard to believe after all the antibiotics that I'm still having active symptoms of Lyme," she said.

Other than the sensitivity to light and the buzzing in her legs, Cline feels well. She's even joined a gym in January.

There is currently no cure for Lyme disease and the disease can become resistant to medications.

"After the antibiotics stop and you think you're cured, you can relapse days, weeks, months or years afterward," Cline said. "It is much harder to treat the second time around because it (the Lyme disease) blends in and camouflages itself in the body."

She said every so often she has to switch antibiotics and Lyme can go into cyst form, which makes it virtually impenetrable.

Cline's doctor, who now has an office in Towson, Md., has a master's degree in public health and nutrition, which is why most of her pills are vitamins and supplements, she said.

"He advocates exercise also because it helps to strengthen the immune system. He said you can't just lay on the couch and let the antibiotics work," she added.

Since she was diagnosed with Lyme, Cline has become somewhat of an expert on the disease.

"Before I got stricken with it, I knew a little about it," she said. "I just thought it's a bug bite. You take antibiotics for three or four weeks and that's it. That's what I thought."

She noted there are a few very good Web sites where you can find more information on Lyme disease, including www.lymenet.org, which has a very active discussion forum, and www.ilads.org. Many Lyme Web sites list the many symptoms, including those Cline had, which are fever, fatigue, swollen glands, pulse skips, twitching of the face or other muscles, headache and loss of muscle tone.

Cline said if you have many of the symptoms and feel you might have Lyme disease, finding a specialist is essential.

"You can have a flaming, raging case of Lyme disease and still have a negative test result," she said. "If you feel you have Lyme disease, you have to find a Lyme specialist because it is ultimately a clinical diagnosis."

Mayersohn Pushes Changes In Treatment Of Lyme Disease

2005-09-23T08:05:00.000-05:00

Queens Chronicle
Assemblywoman Nettie Mayersohn of Flushing has been instrumental in changing state regulations regarding the treatment of Lyme disease. Five years ago, several people who suffered from the debilitating disease brought their concerns to her for further investigation. Apparently, some physicians were being penalized by insurance companies for prescribing extended antibiotic treatment for patients.
At that time, long-term antibiotic treatment for Lyme disease was not so common, although now it is a routine procedure. As a result of complaints by insurance companies over rising costs, several doctors treating Lyme disease faced charges and serious discipline, one even had his license revoked, according to Mayersohn.
She and other legislators contacted Governor George Pataki to discuss the problem. Over the next few years, in conjunction with the Office of Professional Medical Conduct, they worked out ways to protect these doctors while also not hindering the ability of the state to prosecute and discipline bad practitioners.
In June, OPMC Director Dennis Graziano issued a memorandum noting that it is contrary to the policy and practice of his agency “to identify, investigate, or charge a physician, physician’s assistant or specialist assistant based solely on that practitioner’s recommendation.” However, those physicians who may actually hurt a patient will still be subject to strict disciplinary action.
The memo specifically refers to the treatment of Lyme disease and other tick-borne diseases. Lyme disease can cause serious joint problems and other health issues if not treated quickly or effectively.
Although more common in rural areas, the city Department of Health reported 357 cases in the city last year, but it is believed that 85 percent of them were contracted outside the city. Infected deer ticks are usually found in high grass.
The disease is spread when the tick bites a human. Often the gorged bodies of the ticks remain on the skin until removed.
To prevent infection, wear light-colored clothes, tuck pants into socks and wear closed-toe shoes when walking in brush-covered areas. The ticks are most prevalent from the spring through the fall.
The city DOH recommends that while outside in rural areas, people should use DEET insect repellent. After returning from outdoors, check skin for attached ticks.
Ticks should be removed carefully with tweezers. Do not handle them. Wash the area of the bite after removal.
The disease is named after Old Lyme, Connecticut, where it was first discovered. Symptoms include a bull’s-eye ring around the bite, headaches and joint aches.
Dr. Joseph Burascano, a Lyme disease specialist, applauded the new state policy. “The pressure is now off Lyme-treating physicians in New York and is certainly a reward for all the hard work and efforts of the Lyme community.”
Mayersohn promises to make sure the policy is carried out as written. Her efforts were praised by the Lyme Disease Association and Voices of Lyme/NY.

Neuropathic pain a lucrative drug target

2005-09-21T14:31:00.000-05:00

United Press International
WASHINGTON, DC, United States (UPI) -- The company that can develop an effective, easy-to-use drug specifically for neuropathic pain should enjoy outstanding revenues, industry analysts predict.

Datamonitor PLC, a business information company in London, reported this outlook in a statement released last week. The company looked at seven major markets -- including the United Kingdom, the United States, Japan, France, Germany, Italy and Spain -- and found that among $2.5 billion in sales for pain drugs, not one compound has been developed specifically for neuropathic pain use.

Unlike nociceptive pain, which is a message from an injured area of the body to the brain that subsides when the injury heals, neuropathic pain seems to be generated by the nerves themselves. There usually is no active injury present when the pain is experienced, and it often grows worse over time.

Remedies for nociceptive pain, such as NSAIDs and opioids, do not work for neuropathic pain, which is only marginally affected by opioids and responds best to anti-convulsants and tricyclic anti-depressants that block the brain`s neurotransmitters.

The classic example of neuropathic pain is phantom-limb syndrome after amputation. Although a part of the body has been removed, the patient often experiences what feels like stabs of pain throughout the missing extremity (neuropathic pain is often described as stabbing, searing or burning).

Diabetes, AIDS, multiple sclerosis, fibromyalgia, chronic-fatigue syndrome, reflex sympathetic dystrophy, Lyme disease and shingles (caused by a virus similar to chickenpox) also produce neuropathic pain, and people with these problems will form a large part of the projected neuropathic pain drug market.

As of June 2005 only five drugs had been approved by the Food and Drug Administration to treat neuropathic pain:

-- gabapentin, marketed by Pfizer as Neurontin, the gold-standard drug used in over 50 percent of cases and originally developed to treat depression;

-- lidocaine, marketed by Endo Pharmaceuticals as Lidoderm, a local anesthetic;

-- carbamazepine, originally marketed by Novartis as Tegretol, an anti-convulsant;

-- duloxetine, an anti-depressant marketed as Cymbalta by Eli Lilly, and

-- pregabalin, also marketed by Pfizer as Lyrica, another anti-depressant.

Neurontin recently lost its patent protection in the United States, and a number of generic versions are now available.

Most of these drugs need to be taken four times a day, opening a space for a pharmaceutical that requires less from the patient.

'Patients with neuropathic pain usually require several upward titrations of their pain medications before adequate pain control is achieved,' said Clare Churchill, a healthcare analyst for Datamonitor, in the company`s statement. 'This can be particularly difficult if the patient must go through a difficult administration method a number of times before any results are seen.'

Because many neuropathic-pain patients also are being treated for other conditions -- and therefore already must endure challenging pharmaceutical regimens -- Churchill said medication that could be taken orally once a day and would not negatively interact with other drugs would be ideal.

Datamonitor reported there are at least 97 compounds in development for the treatment of neuropathic pain, making it one of the most active pipelines in the central nervous system area. The company`s analysis showed competition is centered on improved dosing formulations, but any serious drug would need to be at least equivalent in safety and efficacy to gabapentin and would need to demonstrate proven pain-reduction ability of greater than 50 percent in a significant majority of patients.

Dr. Michael Ferrante, director of the Pain and Spine Care Center at the UCLA Medical Center in Los Angeles, said he would be delighted to see new pharmaceuticals developed for neuropathic pain in the near future.

'Neurontin was a great step forward because it had a low side-effect profile and produced very quick results,' Ferrante told United Press International. 'Cymbalta, the newest medication, is more effective, but carries a significant risk of nausea. Lyrica is five times as effective as Neurontin, with a similar low side-effect profile, but is listed as a scheduled medication because it can potentially cause euphoria.'

Ferrante said there is a strong need for an effective drug against neuropathic pain that has a low risk of side effects.

'People have been suffering for years with neuropathic pain, which is terribly debilitating,' he said. 'We need a home run for them.'

Churchill said pharmaceutical companies also should consider devoting time and money to explore the pain-drug market in Japan, where neuropathic pain currently is treated with nerve blocks and vitamin B alone.

'Educating Japanese physicians on the use of the few current medications for neuropathic pain will be expensive and challenging,' she said, 'but the company that can do this effectively will reap a huge reward. There are a lot of sales out there.'

Glory bid boost for Norfolk archery star

2005-09-21T12:55:00.000-05:00

Eastern Daily Press
Norfolk archery star Mel Clarke has been given a big boost as she prepares to take on the world. The 23-year-old world No 1 disabled archer from Taverham, near Norwich, was presented with a special new wheelchair. It has an e-motion control that will increase her mobility and give her a more stable platform from which to fire her arrows and hopefully give her the edge over her opponents. The wheelchair will be put to its first big test this weekend in Italy, where she will be competing in the World Disabled Archery Championships - after the honour of carrying the Union Flag in the opening ceremony. The presentation was made at the Proclaimers Church, Hellesdon High School, and followed a fund-raising campaign led by church member Sandra Gill. The original appeal target was £5000, enough money to buy the wheelchair, but a total of £8251 was raised, providing additional funds to support Mel's travelling and equipment expenses.

Norwich-based Able Community Care set the fund-raising ball in motion with a £1000 donation.

The company also launched a 52p appeal, encouraging people to give a minimum of one penny a week for a year to the fund, and that raised over £800.

Other highlights included £2600 from a ladies evening organised by Sandra Gill, Gillian Crossland and Gill Greengrass; £750 from Barclays Bank; over £800 from a quiz night; and £322 in sponsorship from Dennis Bartram, who ran the Brandon half-marathon.

“The wheelchair is absolutely fantastic,” said Mel. “It means that I will use less energy getting around and will be able to focus all my attention on the archery.

“I am delighted to have been invited to carry the flag at the World Championships' opening ceremony, and will do all I can to win gold for Great Britain, Norwich and Norfolk. Thank you so much to everyone who has contributed to Sandra Gill's appeal.”

Sandra Gill said: “Mel is an inspirational person. She has pressed forward following great difficulties with wonderful determination. We wish her luck in Italy and hope that the wheelchair will help her win gold.”

Mel, who took up archery over six years ago, has been wheelchair-bound since the age of 11.

She has a form of arthritis called reflex sympathetic dystrophy. Two years ago she contracted Lyme disease, a near-fatal disease which left her paralysed from the waist down and blind in the right eye.

Mel won gold at the European Disabled Archery Championships in Poland in 2002. She represented the full UK women's team in June 2003 at the XVI Golden Arrow Grand Prix in Antalya, Turkey and won a silver medal.

She currently holds 20 county records, 10 national able-bodied records and six International Paralympic Committee world records. Her main ambition is to represent the UK at the 2008 Beijing Paralympics.

Does chronic Lyme disease play a role in CFIDS?

2005-09-20T19:49:00.000-05:00

CFIDS CHRONICLE A quarterly publication of the CFIDS Association of America, Spring 2005

Chronicle Q & A The Chronic Lyme Disease Controversy
by Angenette Rice-Figueroa, Publications Director

Chronic Lyme disease is raising baffling scientific questions for clinicians and researchers. Patients are also confused since overlapping symptoms make it difficult to determine if they have CFIDS, FM or persistent Lyme disease. Here, one clinician and Lyme expert weighs in on the Lyme controversy.

Clinicians and researchers are involved in a debate over the existence of persistent or chronic Lyme disease. Some doctors classify Lyme disease as chronic when its symptoms persist even after antibiotic treatment therapy. Other clinicians and researchers believe there is no such thing as chronic Lyme, but that an initial Lyme infection may have triggered the onset of chronic fatigue and immune dysfunction syndrome (CFIDS) or fibromyalgia(FM). Still another group question the plausibility of Lyme disease being a causative factor in CFIDS and FM.

Lyme disease itself originally became known in 1975 after researchers began studying the cause for a large cluster of juvenile rheumatoid arthritis cases in and around Lyme, Connecticut. The researchers soon discovered that the children were suffering from a multisystem inflammatory disease caused by a bite from a deer tick. That bite
transmits in infection with a spirochete or spiral-shaped bacteria known as Borrelia burgdorferi.

The issues about chronic Lyme don't stop with the question of its existence. There's also controversy surrounding diagnosis and treatment. The symptoms of persistent Lyme disease are remarkably similar to CFIDS and FM - flu-like illness, fatigue, muscle and joint aches, and neurocognitive dysfunction - making it nearly impossible to distinguish between the illnesses.

A distinctive symptom of Lyme is the erythema migrans, a red bull's-eye-shaped rash that forms around the area of a tick bite. Although this rash is a sure indicator of Lyme bacteria, it doesn't appear in all tick bites. Just as with CFIDS and FM, the diagnosis for Lyme disease is primarily clinical. Clinicians use a detailed medical
history and careful examinations to rule out other disorders first, and then rely on lab tests to back up the diagnosis of Lyme disease.

The problem is that no single blood test provides definitive results. Two of the most commonly used tests are the enzyme-linked immunosorbent assay test (ELISA) and the Western Blot, both of which test the blood for evidence of antibodies created to fight Borrelia burgdorferi bacteria. Unfortunately, the results of both tests can be inaccurate, and analysis methods are not always the same from lab to lab. The ELISA test can show a false negative if performed too soon, and a positive ELISA should be confirmed with a Western Blot.

Lyme bacteria attach themselves to proteins, creating a disguise and defying detection, allowing the bacteria to enter the nervous system. Once the bacteria enter a cell, the immune system can't 'see' them and therefore doesn't know to create antibodies. So while a Western Blot may be more accurate, neither it nor the ELISA tests is useful once the body has ceased creating antibodies.

The US Department of Health and Human Services reported in 2003 that National Institutes of Health (NIH)-sponsored researchers began re-evaluating the existing tests and developing new, more reliable tests. But even after a positive diagnosis is made, many physicians disagree on adequate treatment duration. Suggestions run the gamut from 6 weeks to as long as 36 months. NIH-sponsored researchers are also studying how best to treat chronic Lyme disease.

One of the clinicians interested in chronic Lyme is Dr. Joseph Jemsek, founder of the Jemsek Clinic in Huntersville, North Carolina. Dr. Jemsek's practice treats thousands of HIV, CFIDS and chronic Lyme patients from across the country. In this interview, Dr. Jemsek offers some thoughts on the chronic Lyme puzzle.

Q. Do you think chronic Lyme exists?
A. Yes, I certainly do. As early as 1985 I diagnosed and treated an occasional patient with Lyme disease. Based on that experience, I am convinced that the Borrelia burgdorferi bacteria that cause Lyme disease can persist and cause chronic or recurrent symptoms. I also believe that chronic Lyme is the ringleader in many other illnesses, especially when symptoms of immune dysregulation exist.

Q. What are the problems with testing methods?
A. The biggest problem is a lack of standardised testing, and the tests we do use can be problematic, especially if they are performed either too early or too late into the illness. Too early into he illness antibodies aren't being created yet, while too late into the illness the immune system is no longer making antibodies. ELISA is not a true screening test because it's not proficient or sensitive enough to detect Borrelia burgdorferi. We use the Western blot testing method at the Jemsek Clinic because it looks for more unique and specific antigens.

Q. Can you explain a little more about what the ELISA and Western blot are screening for?
A. Both tests indirectly detect infection by detecting antibodies in the blood serum. The presence of an antibody doesn't always mean an active infection is present, but it does indicate exposure to the infectious agent. The absence of antibodies doesn't necessarily mean that there is no active infection. Our bodies make antibodies in response to foreign attackers like infection. The first antibody created is usually immunoglobulin type M or IgM. It takes about four weeks to make IgM in quantities large enough to be measured. The antibodies typically stay in circulation for about six months and then the detectable levels decline. If the infection persists and the IgM levels remain detectable, the Lyme patient is chronically ill. The second, more potent antibody is the IgG, which is made after IgM. IgG takes four to eight weeks to form, and peaks at about six weeks. Because the two antibodies are different, there are two separate tests to detect their presence. When testing patients, physicians should specifically order either the IgM or IgG ELISA or Western blot.

Q. What other illnesses do you see in chronic Lyme patients?
A. A disruptive, chaos-causing chronic infection like Lyme may be harboring other diseases. In addition to the obvious overlap with CFIDS and FM, we see many disease associated with chronic Lyme. We find celiac disease up to 10 percent of the time, but it's only supposed to be present in 1 percent of the population. We've seen thyroid nodules, thyroid disease, dysmenorrhea, atypical ALS, atypical MS, Crohn's disease, the list just goes on and on. There are also co-infections caused by microorganisms in the deer ticks that carry Lyme bacteria. Studies have shown that co-infections like ehrlichiosis, babesiosis, bartonella and Rocky Mountain spotted fever can be present with more severe symptoms and can be more difficult to treat than Borrelia.

Q. When should people diagnosed with CFIDS be tested for chronic Lyme?
A. When the NIH finally took Lyme disease seriously, they developed criteria and we had a symptom complex we could follow. At that time patients either had Lyme disease or they didn't. However, the three major symptom categories of chronic Lyme that overlap with CFIDS - cognitive dysfunction, central nervous system irritability and fatigue - make it hard to tell he difference between the two illnesses especially if there's no tick-associated rash. But if PWCs have any neurological symptoms that are otherwise unexplained, they should be tested for Lyme bacteria without question.

Q. Aside from lab tests, how can you screen a CFIDS patient for chronic Lyme?
A. Since there aren't any particular signs of chronic Lyme, we sit down and talk to the patient. During that conversation we might find that a PWC had a tic or tremor or shooting pain that he or she didn't tell anybody about before, indicating an unexplainable neurological symptom. At that point we'd test for Lyme bacteria. If the test is positive, the patient's response to antibiotics becomes critical. If we prescribe antibiotics and the patient has some sort of unexpected bizarre effect or intensification of symptoms, or if new symptoms develop, then we try different treatment regimens until we find one that works.

Q. Is long-term treatment of chronic Lyme really effective?
A. We know that treatment is controversial, but in targeting Borrelia burgdorferi we tend to have pretty good clinical success in the vast majority of patients. There's an art to treating a patient and to letting that patient's body detoxify, so we attempt to craft a rational antibody program that often requires different combinations and sequences of medications over a period of time. Because chronic Lyme is a complex multisystemic disease, issues of pain and sleep also have to be addressed in addition to the bacterial infection. Typically, after a few weeks of treatment, a patient's cognition is improved and a lot of the neurological symptoms will improve. Fatigue is probably the last symptom to turn around. Two studies have indicated that longer-term antibiotics make no difference in treating CFIDS patients. It's my feeling that you can't base treatment of serious morbid illnesses like CFIDS or chronic Lyme on one or two studies.

Q. What happens when you get the patient that no one has been able to diagnose?
A. Other doctors will say, "We don't know what it is, but we know it's not chronic Lyme." And sometimes they're right. We don't always have an immediate answer, but because we see so many other illnesses related to Borrelia bacteria, we assume it is imbedded in the nervous system and playing a role in their illness at some level.

Q. There was a vaccine for Lyme disease at one time, but it was taken off the market. What happened?
A. The vaccine was called Lymerix, and it was a colossal disaster. Basically, the vaccine itself was making people sick by triggering treatment-resistant Lyme arthritis and other chronic arthritic disorders. Further study into the case found that about 30 percent of the population carries a gene that might develop this autoimmune arthritic disease if given the vaccine. The drug's makers created the vaccine without understanding the basic physiology of the organism in the tick versus the human in terms of changing its surface antigens. They didn't recognize that Borrelia could be an asymptomatic imbedded infection. I think it'll be a long time before we have another vaccine.

Q. Why don't clinicians know more about chronic Lyme?
A. Many clinicians believe that chronic Lyme is easily cured and therefore don't take the disease seriously. It's mostly a matter of having the scientific evidence to prove to clinicians that chronic Lyme exists, and unfortunately we don't have that right now. We're at a primitive state as far as the clinical science is concerned. In the past year there's been an upturn in basic science reporting about chronic Lyme in both the United States and Europe, so interest in this illness is growing.

Q. Some people believe chronic Lyme and CFIDS are sexually transmitted. What do you tell your patients?
A. I know that Borrelia is a clever organism that's a member of the syphilis family. When people ask me, I have to tell them I don't know if these illnesses are sexually transmitted or not. There's no research to support either school of thought. I just advise people to take precautionary measures.

Q. Why is there such controversy over chronic Lyme?
A. That's not an easy question to answer. Doctors have to rely on the literature available to them, and unfortunately that literature is full of antiquated ideas. Therefore, some physicians tend to trivialise or deny its existence. The biggest disparity in opinion is between those in academic medicine and the doctors who actually treat chronic Lyme patients. The academicians believe that the most debilitating chronic Lyme, often referred to as neuroborreliosis, is hard to catch, over-diagnosed and easily cured in a few weeks. Treating physicians know that treatment protocol for chronic Lyme can last for months, and they very seldom refer to a patient as cured because relapse is always a possibility. HIV has a $2 billion research budget and millions of published articles, yet everything we know about it changes every few months. So how can we as clinicians be dogmatic about the existence and treatment of another serious chronic illness?

Q. Where does the burden fall for research into chronic Lyme diagnosis and treatment?
A. We have to get the scientists involved and excited about chronic Lyme. The responsibility for research doesn't fall into one particular category. Our situation with chronic Lyme and CFIDS is similar to the situation with HIV in the 1980s in terms of funding and research. There are thousands of diseases to learn about, and right now chronic Lyme and CFIDS just aren't at the top of the list. I think it'll be another 5 to 10 years before that happens. I do believe that if we learn more about chronic Lyme and the cause of CFIDS we're going to unlock the key to a lot of chronic illnesses.

(interview ends)

Footnote:

Dr. Joseph Jemsek is the founder of the Jemsek Clinic. Prior to opening the Jemsek Clinic, he practiced infectious disease and internal medicine for 21 years at the Nalle Clinic in Charlotte. He is board certified in both internal medicine and infectious disease. His special interests include HIV/AIDS, persistent Lyme disease or chronic neuroborreliosis, chronic fatigue syndrome, fibromyalgia, chronic sinusitis and general internal medicine. Visit his website at www. jemsekclinic. com.

Sidebar: Did You Know?

* Lyme disease is named for Lyme, Connecticut, where a cluster of cases occurred in the early 1970s. Today it is acknowledged as the most common vector-borne disease in the United States.

* Lyme disease is transmitted by tiny deer ticks that are infected by a bacterium, or spirochete. A tick on the skin does not automatically mean you have an infection. Common sites for ticks are warm and moist areas, such as the genital area, behind the knees and on the neck.

* Research shows that an infected tick usually has to be attached to your skin for at least two days to transmit Lyme bacteria, but some clinicians believe it can be transmitted in as little as five hours.

* If you have a bull's eye rash around the area of a tick bite, you most likely have Lyme disease, which may or may not become chronic. However, the rash is absent in at least 25 - 35 percent of people who become infected.

* Lyme disease can result in crushing fatigue and can affect the nervous system, causing severe headaches, pain or weakness in the limbs and poor muscle movement. These symptoms overlap with CFIDS, further complicating diagnosis of both illnesses.

Vineyard Epidemic: Lyme Disease on the Rise: Health Experts Track Cases

2005-09-15T23:38:00.000-05:00

Martha's Vineyard Gazette - Edgartown,MA,USA
By BRIEN HEFLER

The Martha's Vineyard Hospital reports a large increase in Lyme disease cases this summer - over double the number seen last year - fueling concerns about what many public health experts say is now an epidemic of the disease carried by tiny deer ticks.

Donna Enos, infections control nurse at the hospital, said case reports submitted by emergency room and primary care physicians show a sharp increase in Lyme disease over last year's numbers, with 40 cases in June, 110 in July and 105 in August. Mrs. Enos predicts September will show an increase as well due to warm weather.

"September is looking very high too; let's not forget the temperature out there, it's like August all over," she said.

The numbers reflect diagnosis by hospital doctors. Final confirmation will come through the Massachusetts Department of Public Health (DPH), a process that takes several months.

Surrounded by a sheaf of case reports for the summer, Mrs. Enos spoke from her office this week about the incidence of tick-borne illness on the Island.

"This year is significantly greater than years past on what I'm reporting right now, but the final word will come from the DPH," she said.

Each case of Lyme disease diagnosed in the hospital is documented using a reporting form from the state DPH. Mrs. Enos said the process is lengthy and final numbers will not be available until winter. Every case submitted by the hospital must meet a strict set of criteria to qualify as a confirmed Lyme disease case. Some Lyme disease cases seen on the Island may not be reported, including cases involving visitors who contract the disease and return to their home state for treatment.

In short, the actual number of cases may be higher than reported.

Dr. Frederic Cantor, a public health veterinarian for the DPH, agreed the numbers may not reflect the complete number of Lyme disease cases seen on the Island, but he said guidelines are necessary when comparing the number to state and national totals.

"For our statistical, yearly evaluation, we need to make sure we're talking about the same thing year to year," Dr. Cantor said, "There may be some cases that we cannot capture that are clearly [Lyme disease] but without the recording and information they get put into different categories."

While the final tally is not yet available, Dr. Cantor agrees that there has been an increase in Lyme disease cases this year, along with other tick borne illnesses. Already, the DPH has confirmed eight cases of tularemia on the Island this year and is investigating four more. While rare in other parts of the nation, tularemia seems to flourish on the Island, with 37 confirmed cases seen since 2000.

The Health Report of Martha's Vineyard, a comprehensive study of health issues in the adult population on the Island done in 2002 and 2003, found epidemic levels of Lyme disease. A draft final report completed late last year found one in five full-time residents reported having a tick borne illness, and 12 per cent reported having had Lyme disease. Seven per cent of part-time residents also reported having either been diagnosed or treated for Lyme disease.

The rate of Lyme disease was even higher for up-Island residents.

Dr. Cantor and Mrs. Enos both said the increased numbers this year can at least partly be attributed to better reporting by Island doctors.

Mrs. Enos said emergency room doctors at the Island hospital have quickly become experts at recognizing Lyme disease and other tick borne illnesses.

"I don't think [the increase] is because there are more ticks, but more awareness," Mrs. Enos said.

But Dr. Cantor and Mrs. Enos also believe weather is a factor. Mrs. Enos said a wet winter coupled with a warm, dry summer means more people venturing into areas where they are exposed to ticks, including woodlands and beaches.

Dr. Cantor agreed.

"I think it's a combination of things. It's not just the increased vigilance at the hospital because we've had that since 2000," he said, adding: "I think the weather again is warmer and lasting longer, so there are going to be more exposures. We see that for a lot of diseases, like rabies - if it's something that's weather dependent it means people either have to go out there and be exposed or that the bugs aren't there."

Dr. Bela Matyas, medical director of epidemiological studies for the DPH, said the large deer population on the Island give deer ticks an ideal breeding ground. Deer ticks, which carry Lyme disease, use large mammals such as deer to lay eggs.

"You have the perfect ecology for [Lyme disease] and animals that are important in the cycle that transmit it - the only natural predators on the Island [for deer] are automobiles and there are no other predators that keep the process in check," he said.

Dr. Matyas said studies have shown that reducing a deer population has a direct correlation on the number of deer ticks. One female deer tick can lay between 2,000 and 3,000 eggs and one animal can support dozens of ticks. A task force formed earlier this spring began to examine the question of reducing the deer population, including extending the hunting shotgun season from one week to two weeks. The Island is the only region in the commonwealth with a one-week shotgun season.

Five years ago Nantucket added a third week to shotgun season for deer, and lowered the deer population by an additional 200. But the additional hunting saw vocal opposition from some residents, and Nantucket selectman have since opted to return to a two-week season.

Health experts say prevention is still the best cure. Mrs. Enos recommends people take all necessary precautions to prevent tick bites, such as tucking pants into socks, wearing light colored clothing so ticks are easier to spot and applying tick repellents with a concentration of DEET no greater than 30 per cent. If a tick is found, Mrs. Enos advises slow and careful removal, using tweezers or special removal tools like the Pro Tick Remedy - small, precession tweezers designed for tick removal and available at the hospital. She also reminded people to thoroughly wash the area where the tick was found, as well as the hands after removal. Avoid crushing ticks with bare hands or touching the face or mouth before washing hands, Mrs. Enos said.

Fast action is also important when symptoms appear. Mrs. Enos said anyone who experiences symptoms associated with Lyme disease such as headache, joint pain, fever or facial paralysis, should seek immediate medical attention.

Lyme disease is documentary film subject

2005-09-15T07:18:00.000-05:00

Martha's Vineyard Times
By Nelson Sigelman

Andy Abrahams Wilson, a San Francisco based filmmaker, said he had never thought much about Lyme disease until his twin sister contracted the debilitating tick-borne disease and endured a long medical odyssey on her way to a diagnoses and treatment.

Mr. Wilson has now focused his attention and documentary skills on the subject of Lyme Disease in a film now under production titled, "Under Our Skin, The Lyme Disease Enigma." His research has led him to the conclusion that our health care system is not responding adequately to what he said is a silent epidemic.

From tomorrow through Sunday Mr. Wilson will be on Martha's Vineyard where he intends to interview people intimately familiar with the ravages of Lyme Disease.

Mr. Wilson said that when his sister, who lived in upstate New York, first complained about the effects of Lyme Disease he thought that she was just trying to get attention and simply tired. Then when a close friend in San Francisco became ill.

"None of the doctors could diagnose what was going on with her and she was just getting sicker and sicker," he said during a telephone interview from his office in California. "She was starting to have neurological problems. She would forget who she was and where she was."

He said the woman was finally diagnosed with Lyme after a number of misdiagnoses. It was that story that first attracted his attention.

"I am a film maker and what I do is really about trying to bring awareness to people and this was a fascinating untold story that I thought needed to be told," he said.

He has been working on the project for a year through a nonprofit corporation set up to produce the film which he expects will be broadcast on a national network like PBS or HBO. The working title is "Under Our Skin."

His Vineyard stop is part of a production trip to the northeast that will begin in Boston and finish in New Jersey. The fact that he has a friend who lives on the Vineyard and an abundance of ticks and people with stories to tell about tick-borne diseases made the Island a natural place to visit.

Mr. Wilson said one of the Vineyarders has already spoken to is Sam Feldman of Chilmark, one of the leaders of the tick task force, an ad hoc group of Island residents concerned about finding ways to reduce the spread of tick borne diseases.

Asked what he has learned over the course of his production research, Mr. Wilson said, "I think that this is such a rampant disease and that people are not getting diagnosed or treated."

One of current controversy that exists is whether there is such a condition as chronic Lyme Disease, which needs to be treated aggressively, usually through a long-term course of antibiotics.

"No matter what the controversy is, people are very sick and people are not aware of modes of transmission and people are losing their livelihoods," said Mr. Wilson. "I see it as a very big crisis, something that to me that in the past seemed like it was just a minor condition to something that is really a public health threat of the greatest magnitude."

And why would seemingly responsible physicians and research scientists not see this as a crisis? "That is one of the questions we are asking in the film," said Mr. Wilson. "And I can't give you an answer for that."

Mr. Wilson said that one of the biggest problems is that many physicians do not have the information they need and are not aware of the magnitude of the problem. He said by most accounts information provided by the federal Centers for Disease Control is inadequate and out of date.

"There is so little peer reviewed information, communication between people working in the field that there is this great chasm between people working with Lyme patients on a regular basis and physicians who just every now and then will get a Lyme patient, or might get a Lyme patient and not know it."

As an example, he said his co-producer and her husband both returned from a trip to the Vineyard with cases of Lyme Disease. "And the doctors at Stanford basically diagnosed them with Silicon Valley stress syndrome," he said. "They've been sick and on their journey of recovery for some time now, but they were fired by their physicians who said there is no Lyme Disease in California."

He said that while people may be more aware of Lyme in places like the Vineyard the disease has become a national problem. The focus needs to be on finding a way to diagnose the disease or people will continue to be sick the rest of their lives he said.

Mr. Wilson said he is currently engaged in research for his film, fund raising to pay for its costs and the actual production. He said the Vineyard trip would provide an opportunity to do some of all three of those things.

"Because of the Vineyard's nature as an endemic area it seem like a natural place to be," he said.

According to his company website, www.openeyepictures.com, in 1994 Mr. Wilson founded Open Eye Pictures, an award-winning production company specializing in creative non-fiction and commercial media. He said the current project was set up as a nonprofit venture because the market is limited and there is little likelihood of profit.

"In a lot of ways it is a labor of love," he said. "I get to do something that I am passionate about, that I believe in, and that I think might help change the world. The downside is that there is no market for that."

People interested in contacting Mr. Wilson to speak about their experience with Lyme Disease may contact him through his office at 415-332-3266.

Health spiraled downward before disease diagnosed

2005-09-13T07:32:00.000-05:00

NORFOLK, Neb. (AP)
For an outsider looking in, a lot of days could have seemed like rock bottom for the Endorf family.

But one incident stands out in particular for Charlotte and Kevin Endorf of Norfolk.

Their 15-year-old daughter Sarah had been sick.

She got strep throat in March 2004. The doctor prescribed 10 days' worth of antibiotic. She didn't get better.

Her health worsened to mononucleosis-type symptoms - sleeping 20 hours a day where previously Sarah had been a light sleeper, Charlotte Endorf said.

But she tested negative for mono.

"Six doctors in Nebraska looked at her, scratched their heads and said, 'I have no clue what's wrong with your daughter.' Meanwhile, she's withering away before our eyes," Endorf said.

At that time, Sarah had dropped to 85 pounds, started to hallucinate and experience extreme pain.

But the Endorfs didn't really hit rock bottom until they traveled to Missouri to visit a doctor there.

At that time, Sarah had to be off of all of her medications in order to be tested again.

The family had just sat down to eat at a restaurant.

"She (Sarah) looked at the menu and looked at us and said, 'What's shrimp?' We looked at each other and looked at her and said, 'What do you mean, what's shrimp?'

"Tears were running down her face, and she said, 'I'm not kidding. I don't know what shrimp is.' We knew then, we had a problem," Endorf said.

"And then, we said, 'Well, we've eaten shrimp all of Lent. Your brother likes shrimp and you like shrimp.' And then she said, 'I have a brother?' . . . And Kevin and I both lost it, and we started crying."

Short-term memory loss was part of what Sarah was experiencing. That made sense after she finally was correctly diagnosed with Lyme disease.

Lyme disease is an illness caused by spirochete bacteria. The illness is transmitted to animals and man through the bite of infected ticks.

As part of the disease, Sarah has experienced numbness and tingling, severe pain, fatigue, depression and extreme eye sensitivity.

Since her diagnosis, she has been treated successfully with new medications, but she still has a few problems with her short-term memory.

Sarah was able to keep up with her schoolwork via online classes from the Norfolk Public Schools through the University of Nebraska-Lincoln. This year, she is a high school sophomore, and she started when all of the other students did.

Lyme disease can strike anywhere

2005-09-12T07:44:00.000-05:00

TRUMBELL TIMES
After 50 years together, Nancy Lenoce, 69, could tell something was terribly wrong when her husband, Alton "Al" Lenoce, 73, began to experience mysterious but troubling medical symptoms.

However, it would take almost a full year of sleuthing before he received a diagnosis of Lyme disease.

Now Al is recovering form a harrowing experience he wishes no one else should have to repeat.

He first became aware of unusual symptoms when he woke up one morning and found he had no voice.

He referred to this as, "most unusual for me," and said it started a long chain of events that included consultations with six specialists within 12 months.

He underwent countless tests, blood work and visits to specialists, and his health progressively deteriorated, before doctors finally discovered what was wrong.

Al said the reason he saw so many different kinds of doctors was that no one had any idea what was wrong with him, and the longer his illness progressed, the worse his symptoms became.

A cardiologist, urologists and neurologist were among the many doctors who ordered tests, MRI's and blood work, all of which proved inconclusive.

Meanwhile, Al said pain was the worst of his symptoms. It often was often so severe that he was unable to move and could only scream out in agony.

"I'm a combat veteran of the Korean war," he said. "I know what pain is like. It was very, very intense."

In addition to the extreme pain and loss of his voice, Al said his memory was suffering.

Nancy said Al's memory got so bad there were times where the two of them would be on the way to a doctors' appointment, and Nancy would tell her husband who they were going to see. Only a few minutes later, he would ask her, "Where are we going?"

At one of their appointments at the Veteran's Medical Center in West Haven, the doctor recommended they visit an ear, nose and throat specialist. Heeding this advice, the Lenoces did just that, and learned that 40 percent of Al's left vocal chord had been destroyed by some kind of infection.

Nancy said this was the first time her husband's condition had been referred to as, "damage done by an unknown infection," and that he was tested for Lyme disease at this time.

"We are avid gardeners and for years have been conscious and aware of Lyme disease," Nancy said.

She said the two habitually check each other for ticks after spending time in the garden, and wear long pants and light colored clothes in an effort to protect themselves.

Al's Lyme test came back negative, and the Lenoces would later learn that it takes a while for tests like these to come back positive, which explains the results at that time.

By mid-June, Al's condition had gotten so bad (and was still undiagnosed), that he was confined to the house. In the middle of June, the Lenoces opened their gardens to the public as they usually do, but Al was in too much pain to go outside.

His memory loss and pain were at an all time high, and he was suffering from tremors so bad that at one point, they thought he might have Parkinson's disease. On top of all of that, he had dropped almost 30 pounds, unable to eat much of anything.

"I could not/would not eat, because everything I put in my stomach would cause me pain," he recalls.

In July, the two returned to the Veteran's Medical Center, where a doctor looked at Al's blood work, calling it, "basically, a disaster."

Apparently, Al was suffering from ultra-low levels of sodium and electrolytes (due to the fact that he had been eating next to nothing), and there was too much water in his system. He remembers a doctor saying he was in a "near fatal condition," a term he is not soon to forget.

"When a doctor you know and respect says that, it gets your attention," he said.

All of the doctors' attention had now focused on the sodium deficiency, and Lenoce was immediately attached to a sodium intravenous drip, which he stayed hooked up for most of the afternoon.

The doctors recommended that he eat as many high fat and high sodium foods as possible, and he and Nancy recall going to McDonald's every other day, ordering chocolate milkshakes, something that was unusual for the usually health-conscious couple.

A week later, the Lenoces returned to the Veteran's Medical Center for a check up, where the doctor mentioned the possibility of Lyme disease. Later that day, the neurologist called Al at home and confirmed the diagnosis, strongly urging him to go to a leading Lyme disease treatment center in Stratford.

That same day, he had a catheter implanted next to his heart, which would allow for the influx of ceftriaxone, an antibiotic he refers to as, "the gold standard for Lyme disease treatment."

The following morning, his 30-day treatment cycle began. He said these treatments usually last a half hour or so, with a nurse administering the drug.

After the 30-day cycle, doctors will review his blood work and symptoms. Depending on these factors, doctors will decide whether Al will go through another treatment cycle.

"I turned a corner two, maybe three nights ago," he said. "I turned to Nancy and said 'Honey, I think I'm starting to feel a little bit better.'"

He has begun eating a little bit more and stopped experiencing tremors. He is hopeful for the future but aware he doesn't yet know what permanent damage this past year has done to his other organs.

Both Al and Nancy are passionate in their belief that there needs to be a sense of awareness and concern about the dangers of Lyme disease.

"The state of Connecticut should make it mandatory that every person who is having blood work should be tested for Lyme disease," he said, adding that, "this is a very complex problem."

As for the ways the illness has changed his life, he said he was frustrated about the damper it has put on his physical and creative outlets.

He is especially disappointed over the fact that he lost his opportunity to win big on "Who Wants To Be A Millionaire."

He explained that he had first auditioned a while back and had made it to the next round but was unable to attend last week's audition due to his treatments.

Nancy joked that Al still wanted to attend, but there would have been no way he could have made it all the way into the city by train, even with her standing beside him.

Like they have for the last 50 years, the Lenoces have worked as a team through a very trying year and will remain so as Al continues on his road to recovery and back to his beloved garden.

Lyme disease cases rising

2005-09-09T19:40:00.000-05:00

TOWNONLINE.COM
Cases of Lyme disease, a tick-borne bacterial infection, have increased in a big way throughout Metrowest this summer, according to local health officials.

"It's unbelievable," said Metrowest Medical Center's infectious disease clinic chief, Dr. Thomas Treadwell. "There's been days when I've seen five or six cases a day."

Treadwell has not done a firm count, but said he has treated several dozen cases of the tick-borne infection, about two or three times more than last summer.

The danger areas appear to be in Southborough, Callahan State Park in Framingham and areas along the Charles River, Treadwell said. Medfield has acres of wooded areas along the Charles River, perfect living conditions for ticks that love the tall grasses and dense greenery found along rivers. The disease's prevalence may be related to infection rates in rodents, since deer ticks contract the disease from rodents, such as field mice, before passing it on to humans, Treadwell said.

Statewide, Lyme disease cases appear to be about the same as last year, though some areas are experiencing high infection rates, said Dr. Bela Matyas, medical director of the state Department of Public Health's epidemiology program.

"There are different pockets that have been reporting a little bit more, some reporting a little bit less," Matyas said.

Dr. Rahul Sawant, a Franklin internist who is on staff at Milford Regional Medical Center, said he treats between five and 10 people with Lyme disease per month. But this year is not any worse than last, he said. Marlborough Hospital also has not noticed any sizable increase in Lyme disease this year, a spokesman there said.

"This is the time of year when Lyme disease is very common," Sawant said.

Cape Cod and the islands are usually among the hardest hit by Lyme disease, Matyas said. Health-care providers are required to report cases to the DPH, but good statistics will not be available until December, because Lyme disease usually isn't reported immediately, he said.

Reported Lyme disease cases increased dramatically beginning in the late 1990s before stabilizing the last couple of years, he said. About 1,500 to 1,700 cases are documented by the DPH in Massachusetts each year, but it is an underreported disease, so the true number is likely much higher, he said.

In suburban areas, Matyas said, a resurgent population of deer - which provide an important food source for deer ticks - over the last decade has helped make Lyme disease more common.

Lyme disease is usually a "fairly trivial" infection that responds well to treatment, Treadwell said. The typical symptoms are a fever, rash and headache, but it is also associated with more serious complications, including arthritis and facial paralysis, he said.

"It can be a severe disease, but most of the time it's not," Treadwell said. "There's a lot of misinformation, and I think people get frightened by that."

Treadwell recommended using bug spray and keeping feet covered when outdoors, and checking your body for deer ticks after being outside. The ticks, which are very small, like to feed on dark, warm areas such as behind the knee or in the groin or armpit, he said.

For more information on Lyme disease, log onto www.mass.gov/dph and search for Lyme disease in the "health topic index."Jon Brodkin can be reached at jbrodkin@cnc.com.

Tick bites can have many infections

2005-09-08T07:48:00.000-05:00

Poughkeepsie Journal
Are tick-borne diseases the new AIDS epidemic? Government latency has allowed these diseases to spread throughout the country, potentially sparking the next pandemic. And shame on our state legislators who pale in the wake of our Connecticut neighbors in addressing the problem first and foremost, while the Hudson Valley may become the No. 1 source of infections. If there were less politicization, we may have stopped this from becoming a bigger problem.

Ticks and other arthropods can transmit bartonella, tularemia, tick paralysis, Rocky Mountain Fever, Powassan Encephalitis, Q-Fever, Tick Relapsing Fever, Colorado Tick Fever, ehrlichiosis, babesiosis and Lyme disease. The list is probably longer and includes mutations. I'd like to see a show of hands: How many tick bite victims were tested for other infections?

When the tests are not 100 percent accurate, it's time for the Centers for Disease Control to do its job, and take leadership of this growing problem before more acute victims become chronic. Most local doctors are still clueless on diagnosis and treatment. So many I know are being misdiagnosed with MS, arthritis, fibromyalgia, chronic fatigue, heart attack, depression and sleep disorders.

It's time to fight back, especially in the mid-Hudson Valley. Call your elected representatives and encourage action, because if you are lucky enough not to know someone that has had a tick born disease, you won't be soon.

Steve Ascenzo, Poughkeepsie

Educating Californians on Lyme disease

2005-09-02T08:13:00.000-05:00

San Francisco Chronicle - United States
Six years ago, Tony Pennisi marked his 40th birthday with a life- affirming hike up Mount St. Helena through Robert Louis Stevenson State Park in Napa. Back home in Calistoga, he discovered an enlarged tick on his hip encircled by a red ring. Pennisi, a professional forager and savvy outdoorsman, suspected it to be a Lyme tick.

He immediately went to his doctor who, Pennisi says, was skeptical about the existence of Lyme disease. Pennisi insisted on being given a blood test.

"By the time I got the results back eight weeks later that I had Lyme, I was a wreck," he said. Pennisi, who now lives in Vallejo, became extremely light-sensitive, taping newspapers over the windows. He couldn't go outside without sunglasses. Besides great fatigue, he became irritable, had night sweats, lost weight faster than he could eat and slurred his speech.

While antibiotics have helped him almost fully recover, Pennisi recently relapsed.

"I actually fell asleep in the office while listening to the messages on the phone," he said.

Lyme disease has popularly been seen as a regional illness afflicting the Northeast and upper Midwest. Because of the experiences of people like Pennisi, however, an increasing number of local activists are trying to alter that perception. A pamphlet released by the California Department of Health Services says that western black-legged ticks infected with the Borrelia burgdorferi bacteria, which causes Lyme, have been found in 41 of the state's 58 counties.

"I wish I had a nickel for every time I've heard that Lyme disease doesn't exist in California," said Dr. Raphael Stricker, a San Francisco physician who specializes in treating patients with the disease. "We are seeing a lot more patients from around here -- especially from Northern California in Mendocino and the northern counties."

Stricker, who is also president-elect of the International Lyme and Associated Diseases Society, recently closed his practice to new patients because of heavy demand.

The disease is transmitted when an infected tick the size of a poppy seed passes a bacterial spirochete (a spirally, undulating bacterium) into the human host it bites. Roughly half the time, a bull's-eye ring will appear around the bite, signaling infection. The initial symptoms can include fatigue, fever, joint aches and sleeplessness. While nonfatal, if gone untreated, the bacteria can greatly affect the immune system and even enter the brain.

Because Lyme's effects on the body often mimic chronic fatigue syndrome, Lou Gehrig's disease or multiple sclerosis, the disease has been called "the great imitator" for its propensity to be misdiagnosed.

Ken Broad, 39, a portfolio manager for an investment company in San Francisco, knows this all too well. After contracting the disease on vacation in Cape Cod, the Mill Valley resident came home when symptoms such as brain fog, muscle twitching, facial numbness, vertigo, depression and chest pains started to accumulate.

When visits to 15 doctors, including neurologists, cardiologists, specialists in internal medicine and genetic counseling, failed to alleviate his various ailments, a frustrated Broad conducted an Internet search linking such symptoms as brain fog and muscle twitches together. This led him to a paper by a doctor that described all his symptoms as indicative of late-stage Lyme disease. Broad flew to Boston to visit the doctor who prescribed the antibiotic Tetracycline -- and later Biaxin and Plaquenil -- that have helped him now feel 95 percent normal.

"The last step was being diagnosed by a psychiatrist for happy pills (for depression)," Broad said. "How many people my age have to become completely debilitated until you get attention? I literally thought I was dying." He wrote a will and made plans for his wife's parents to move in to help raise his two daughters.

Broad now spends much of his free time advocating for education about the disease, starting the Web site www.lyme-advocate.info. He's also involved with the California Lyme Disease Association.

The peak time for contracting the disease is between April and June when the nymph ticks -- one stage of growth before an adult -- are active.

"I can't emphasize enough how easily overlooked these ticks are," said Bob Lane, a professor of medical entomology at UC Berkeley, who has studied tick-borne diseases for more than 30 years. In field studies in the oak woodlands of Mendocino County, Lane found infection rates for ticks with Borrelia burgdorferi from 5 to 15 percent for nymph ticks and 1 to 3 percent of adult ticks with a few areas approaching 40 percent for nymphs.

"The transmission cycles in the Northeast and Midwest are very different than out here," Lane said. In his studies, Lane found that the people at greatest risk for contracting the disease were those who had direct contact with wood -- including sitting against a tree or on a log, or gathering wood.

Ron Keith, an assistant manager for the Marin/Sonoma Mosquito and Vector Control District, said in an e-mail interview that western black-legged ticks have been found in just about every park or recreation area in the North Bay, including Point Reyes National Seashore, Golden Gate National Recreation Area, as well as China Camp and Samuel P. Taylor state parks in Marin County, and Armstrong Redwoods State Reserve and Sugarloaf Ridge and Annandel state parks in Sonoma County. Keith contracted the disease mountain biking at Annandel. While he still suffers from peripheral nerve damage and a tingling sensation, he said he is starting to feel better after three long-term regimens of antibiotics.

The best way to avoid tick bites is to wear long sleeves and pants, apply insect repellent and remove any ticks on yourself with tweezers.

"Relevant to the threat level, people barely know about it," Broad said. "The reality is if it goes misdiagnosed it becomes a much bigger problem."

Daryl Hall postpones New Hampshire concert

2005-09-01T20:06:00.000-05:00

Boston Globe - United States
Daryl Hall, who was diagnosed with lyme disease earlier this year, has postponed a Labor Day weekend concert with John Oates.

The duo postponed Saturday's concert at the Meadowbrook Musical Arts Center until next season. Hall needs to spend a few days at home recuperating, "due to his ongoing battle with lyme disease," a news release from the center said Thursday. The duo apologized to fans.

Hall and Oates plan to return to the road after Labor Day weekend, the center said. However, their Web site still showed them as scheduled to perform on Labor Day in Canada.

Lyme disease, caused by the bite of infected deer ticks, can cause arthritis, neurological problems and ecephalitis.

Hall and Oates had postponed some shows in July. Hall, 55, had been recovering at his home in upstate New York.

The duo are known for their 1980s hits including "Maneater," "I Can't Go for That (No Can Do)" and "Kiss on My List."

They have been touring in support of their latest album, "Our Kind of Soul."