Lyme Disease: A Public Health Crisis Ignored
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.
Thursday, October 27, 2005
Chelmsford Woman Tells of Battle With Lyme Disease
Lowell Sun - Lowell,MA,USARosalyn 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.”
Monday, October 24, 2005
NCO Press Release
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
Saturday, October 22, 2005
Leo Bogart, 84, Sociologist Who Studied Role of Media in Culture, Is Dead
NY TimesLeo 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.
Thursday, October 20, 2005
Tick-Borne Disease Transmission by Blood Donation Prevalent in Endemic Areas
Medscape Medical NewsThe 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
Kane County ChronicleOne 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.
Tuesday, October 18, 2005
Doctor calls for Lyme patients to step forward
Westmorland Gazette - UKA 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
Western Daily Press - UKMother-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.
Sunday, October 16, 2005
Some NH doctors dispute CDC approach
THE UNION LEADER - New HampshireThirty 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."
Saturday, October 15, 2005
Insurers hit on Lyme disease
Lowell Sun - Lowell, MA, USAWith 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.”
Friday, October 14, 2005
Climate Change And Human Health
New England Journal of MedicineIn 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.
Thursday, October 13, 2005
Patients: Lyme disease misdiagnosed, mistreated
Salem News - MA, USAOne 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
Cape Cod Times - Hyannis,MA,USABOSTON - 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
New Jersey Herald - Newton,NJ,USAAmanda 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
MetroWest Daily News - Framingham,MA,USARussell 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.
Tuesday, October 11, 2005
Lyme disease victims to testify at Statehouse
Salem News - MA, USAHard 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
Bayinsider - Oakland, CAIs 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
Roanoke Times - Southwest VirginiaFour 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.
Monday, October 10, 2005
County's health profile shows an increase in Lyme disease
Chambersburg Public Opinion - Chambersburg,PA,USAIn 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.
Sunday, October 09, 2005
Man loses battle with Lyme disease
Tallahassee DemocratOn 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?
Telephone Credit UnionBy 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.