Hundereds rally to protest new Lyme disease treatment guidelines by IDSA

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Hundreds rally to protest new Lyme disease treatment guidelines.

By LIZ ANDERSON

THE JOURNAL NEWS

Original publication: December 1, 2006

VALHALLA - Hundreds of people rallied yesterday outside Westchester Medical

Center to decry new treatment guidelines for Lyme disease that discourage

the use of long-term antibiotics to treat lingering symptoms.

The voluntary guidelines were issued last month by the Infectious Diseases

Society of America; the lead author was Dr. Wormser, chief of the

division of infectious diseases at the hospital.

Protesters from as far away as California and Texas waved a sea of

neon-green signs at passing cars at the intersection of Woods and Grasslands

roads, some of which personally mocked the doctor with messages like,

" Wormser lies ... Patients Die " and " Dr. Wormser - You Make Me Sick! " Others

read, " Gross Medical Neglect, " and " Stop the Ignorance. "

Lyme disease, caused by the bite of a deer tick, can lead to an initial

infection including a rash and muscle and joint pain; later it can result in

arthritis and neurological symptoms. The new guidelines call for a bite to

be treated with a single dose of preventative antibiotics, but say prolonged

antibiotic treatment " has not proven to be useful. " They also seek to

differentiate between patients with " post-Lyme syndrome " and those with just

the " aches and pains of daily living. "

Patients and advocates yesterday said the study did not take their

illnesses, or their efforts to find successful treatment, seriously enough.

" We are here today to fight back, " declared Gaudian of Ridgefield,

Conn., who decried the new regulations as the result of organizations

" corrupted by the quest for financial gain. "

Pat , president of the Lyme Disease Association, brought a clock that

runs backward to illustrate a study she said was " taking us back in time. "

" We cannot and will not allow the IDSA and their followers to take our

disease away, " she declared.

Protesters cheered Dr. ph Burrascano, vice president of the

International Lyme and Associated Diseases Society, which supports the use

of long-term antibiotics in some cases and has called on the IDSA to retract

the recommendations.

" If they weren't so seriously flawed, I would say it was a joke, " he said of

the guidelines. He urged those at the rally to fight back " by uncovering the

truth. "

Doug Maass, 62, of Sleepy Hollow said he came to the rally because he was

concerned he and thousands of other patients would lose insurance coverage

or be cut off from treatment for chronic Lyme disease. He believes that he

has had the disease since 1988, and that it is the cause of symptoms like

his recurring left-side headaches and swollen glands; his wife, who is also

ill, has symptoms that are even worse, he said.

" I've been on nine different antibiotics over six years, " he said. " When I'm

on antibiotics I feel pretty good. I go off for six or seven months, and the

symptoms come back. "

An attempt to reach Wormser for a response through a Westchester Medical

Center spokeswoman was unsuccessful.

Reach Liz at_ ecanderslohud (DOT) ec_ (mailto:ecanders@...) or

914-696-8538.

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At a glance

The debate at hand is how to treat patients with long-term symptoms that

appear to be caused by Lyme disease.

New guidelines from the Infectious Diseases Society of America say prolonged

antibiotic treatment " has not proven to be useful. "

A different group, the International Lyme and Associated Diseases Society,

supports the use of long-term antibiotics in some of these cases.

Patients and advocates at yesterday's rally oppose IDSA and back the ILADS

position.

Copyright 2006 The Journal News, a Gannett Co. Inc. newspaper serving

Westchester, Rockland and Putnam Counties in New York.