Thursday, November 30, 2006

Lyme disease activists to protest

By Robert Miller

Area Lyme disease activists, dismayed by recently released treatment
guidelines for the illness, will go public with their protest Thursday,
rallying at Westchester Medical Center/New York Medical College in
Valhalla, N.Y., where the lead author of the guidelines works.

"They're highly restrictive,'' said Dr. Steven Phillips, a Ridgefield
physician who is the former president of the International Lyme and
Associated Diseases Society. "I just cannot understand why they've
chosen to ignore all the data on this.''

"They were worse than we expected,'' said Maggie Shaw of the Newtown
Lyme Disease Task Force.

"In a word, I think they're a disgrace,'' said Dr. Raphael Stricker of
San Francisco, who is the current president of ILADS. "They're not
relying on best science. They're relying on their opinion.''

The guidelines are so controversial that Attorney General Richard
Blumenthal has intervened. His office is now investigating whether the
group that wrote the guidelines, the Infectious Diseases Society of
America, is a monopolistic organization trying to shape treatment of
the tick-borne disease without allowing other treatment options to

"It's a medical issue but also a patient issue,'' Blumenthal said.
"Their guidelines limit very severely the types of diagnosis and
treatment available to patients. In a way, that's anti-competitive.''

The national guidelines issued by the Infectious Diseases Society of
America recommend that doctors give patients with Lyme disease 10 to 28
days of oral antibiotics to treat the disease, with another month
allowed for persistent symptoms.

But the guidelines -- now posted on the Web site of the Centers for
Disease Control and Prevention -- deny the existence of chronic Lyme
disease, saying there's no medical evidence that the bacteria that
causes Lyme survives antibiotic treatment.

It also emphasizes using either the characteristic bull's-eye rash or
blood tests to help correctly diagnose the disease -- two methods Lyme
activists say can lead to Lyme cases being missed.

Diana Olson, spokeswoman for the infectious diseases society, said the
14 doctors who worked on the guidelines -- led by Dr. Gary Wormser, an
infectious disease specialist at Westchester Medical Center/New York
Medical College -- studied more than 400 published medical reports on
Lyme disease before coming to their conclusions.

"This is the best science has to offer,'' she said.

Olson said the society could not take into account things like
patients' anecdotal accounts of their Lyme disease treatment in writing
the guidelines. Nor, she said, did it concern itself with whether
insurance companies would pay for treatment outside those guidelines.

She also said that guidelines are just that, and that patients and
doctors are free to find different treatments that work best for them.

She also said the society is cooperating fully with Blumenthal's

"In our experience, we've never heard of this kind of investigation,''
she said. "But we stand behind our methods and our recommendations.''

But Lyme activists and doctors who support a more liberal approach to
treating the disease said the new guidelines are highly restrictive,
not allowing doctors any latitude in treatment.

Perhaps the most contentious point is whether chronic Lyme disease even

Many Lyme patients and their doctors contend the standard treatment for
Lyme disease sometimes fails, or never gets administered to begin with.

When that happens, they say, the bacterial spirochete that causes the
disease can re-emerge in the body, causing a bewildering array of
symptoms -- including arthritis, chronic fatigue, heart problems,
memory loss, depression, and neurological disorders including loss of
sight and hearing.

To treat these symptoms -- and those of several other tick-borne
illnesses, which can overlap -- these doctors recommend several months
or even years of antibiotics, often using a mix of drugs.

The infectious disease society, however, said that these symptoms are
"nonspecific'' and associated with many other illnesses, not Lyme
infection. They also caution that there are medical problems --
including the development of drug resistance -- that should lead
patients to avoid long-term antibiotic care whenever possible.

But Phillips of Ridgefield and Stricker of San Francisco said this
approach ignores the hundreds of studies that now show the Lyme
bacteria can bury itself in muscle tissue, lie dormant, then re-emerge.

"There (have) been 18,000 papers published on Lyme disease,'' Stricker
said. "So saying you're looking at 400 means you've only looked at 5
percent of the research."

"The evidence just continues to grow and grow on this,'' Phillips said.
"To ignore a whole section of this research, as if it doesn't exist,
raises questions for me.''

Because of the prestige the infectious disease society carries, Lyme
activists say insurance companies will now be even more adamant about
refusing coverage beyond 28 days of antibiotics -- something, they say,
that has already begun.

They also say the new guidelines will stifle new treatments, because
doctors will fear they'll be disciplined if they step beyond the

"This isn't theoretical,'' Blumenthal said. "It will come down to a
matter of dollars and cents.''

# Contact Robert Miller

or (203) 731-3345.


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