From The AOL Newsletter

[Guest guest]

I copied this from the May AOL Lyme newsletter, I think this article was

posted before on our list, but I thought it bears repeating for some of our

new members. BTW, if anyone does not already subscribe to the AOL monthly

email newsletter, they can do so by emailing PSPatches@...

Marta

In The News

Debate Over A Disease

Hartford Courant, March 2, 1999

By DEBORAH PETERSEN SWIFT

Lyme disease is Connecticut's disease, and the state has become a boxing

ring

for debate over how to treat it. The disagreement? The length of time that

antibiotic treatment is effective if the symptoms do not disappear after the

first round of medication.

While some doctors say that months of antibiotics may be needed to knock out

the stubborn Lyme spirochete, which has a habit of hiding in parts of the

body, other doctors say continuing antibiotic treatment especially after two

months is little more effective than a placebo, and that prolonged ingestion

of the drugs can cause other problems.

The debate was highlighted last week, when two Connecticut physicians went

head-to-head at a state legislative hearing on a bill that would require

insurers to cover treatment for Lyme disease and follow-up care. The two

were

Dr. T. Schoen, co-director of the Lyme Disease Clinic at Yale-New

Haven Hospital who has consulted for insurers, and Dr. E. , a

Ridgefield physician and researcher.

Schoen said research shows that late Lyme disease is over-diagnosed and

over-treated, while testified that scientific evidence shows that

the Lyme bacterium persists in some patients and that while long-term

antibiotic treatment may not cure them, it's better than nothing.

About the only thing the two camps agree on is this: An initial round of

antibiotics will cure most cases of Lyme disease. Even then, doctors debate

the length of dosage (ranging from two to six weeks) and the type of

antibiotic that works best.

The bigger problem comes for patients who do not get better after the

initial

so-called ``slam dunk'' of antibiotics. Just how many people is that? No one

knows for sure, although the numbers have been estimated at up to one-third

of Lyme disease patients.

``It is vague because we don't know all the answers yet,'' said L.

Weld, executive director of the American Lyme Disease Foundation Inc. in

Somers, NY

Patients who do not recover quickly must decide for themselves which side of

the debate they believe. That decision will determine their future treatment

and the doctor they choose.

At the crux of the debate is whether symptoms that last for several months

or

more are being caused by the Lyme bacterium, a question that remains

unresolved because there is no foolproof test to determine that. Researchers

are trying to come up such a test.

, for example, published a paper in the medical journal Infection in

December, saying he and his colleagues had developed a reliable technique to

grow a culture of the Lyme bacterium - Borrelia burgdorferi - from patients

with continuing symptoms of Lyme disease, and that of those 47 patients, 43

tested positive for the bacterium. believes that this is proof that

the long-term symptoms are caused by chronic Lyme disease, not post-Lyme

disease as some doctors call it.

Whether the results can be replicated in further studies is the next

question, said T. Dennis, coordinator of the Centers for Disease

Control and Prevention's Lyme Disease Program in Colorado. The CDC, he said,

recently called with suggestions on how to proceed, Dennis said.

Coming up with an undisputed test is important because current blood tests,

which measure the antibodies the body produces to combat the Lyme bacterium,

can remain positive after a patient has recovered, or come up negative when

someone is still sick.

``They have antibodies, but that does not mean there is an active

infection,'' said Dennis.

Couple the uncertainty of diagnostic testing for long-term Lyme disease with

a lack of conclusive controlled studies showing that antibiotics are

effective after the first round, and many doctors hesitate to prescribe

lengthy antibiotic treatment.

Dr. Leonard H. Sigal, chief of the division of rheumatology at the

Wood Medical School in New Brunswick, NJ, and director of its Lyme

Disease Center, said he's not sure that the success of long-term antibiotic

treatment ``is supported by scientific evidence.'' Medical research suggests

that in some cases the symptoms are being caused by another disease, and in

a

small percentage of patients, by permanent damage caused by the Lyme

bacterium, Sigal said.

Chronic fatigue syndrome or fibromyalgia, a musculoskeletal pain syndrome,

may be causing the symptoms in some cases, not the Lyme bacterium. Neither

disease has a known cure, and therefore neither will respond to antibiotic

treatment, doctors say.

Instead, doctors often prescribe anti-inflammatories or other medication to

manage the pain.

Also, it is possible, Sigal says in an article in the book ``Lyme Disease''

(American College of Physicians, Philadelphia) that the initial Lyme disease

infection may make patients more susceptible to other diseases.

Dr. Sam T. Donta, professor of medicine, infectious diseases and

biomolecular

medicine at Boston University School of Medicine and Boston Veterans Affairs

Hospital, said doctors cannot wait for research to produce absolute answers.

``What do you do in the meantime?'' he asks. ``We don't know the cure for

cancer. Does that mean we don't do anything?''

In his treatment of more than 400 patients with a three-to six-month course

of antibiotics, 80 percent improved, and 25 percent to 30 percent fully

recovered, Donta said.

The symptoms and their duration varied, but included fatigue, pain in the

muscles and joints, numbness and tingling in the extremities, headaches,

memory loss, confusion and mood changes. Some patients also have heart

palpitations.

To be cured, Donta believes, a patient must be free of all symptoms - no

matter what the blood tests show.

The National Institutes of Health are hoping to find answers to the

treatment

debate in a five-year study now under way. Patients who were diagnosed with

Lyme disease and did not recover after initial antibiotic treatment are

being

given antibiotics intravenously for 30 days, then two months of oral

antibiotics (doxycycline). This particular regime is controversial, however,

and some doctors claim the study is designed to fail.

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