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Wednesday, November 30, 2005


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.

Sunday, November 27, 2005

Lyme Disease Cases in the United States Projected Through 2012

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.

Friday, November 25, 2005

Paralysed by a tick bite

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

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

Monday, November 21, 2005

Lyme disease: scratching the surface

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.

Friday, November 18, 2005

Bug Blamed for Obesity

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

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.

Thursday, November 17, 2005

Emerging infectious diseases focus of forum

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."

Wednesday, November 16, 2005

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

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.

Nick Harris
CEO, IGeneX Labs
Pao Alto, California

Tuesday, November 15, 2005

Amy Tan on Lyme

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.


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."

Monday, November 14, 2005

HMS Study Predicts Disease

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

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.

Wednesday, November 09, 2005

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

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

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

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

Tuesday, November 01, 2005

Fatigue, pain often accompany chronic Lyme disease

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

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

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."

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