interesting article on lyme disease
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Author:  istherehope [ Mon Aug 17, 2009 1:04 pm ]
Post subject:  interesting article on lyme disease

Panel hears conflicting views
on Lyme disease treatment

The board of eight physicians and a veterinarian is charged with deciding if one society's guidelines should be revised.

By Susan J. Landers,
AMNews staff.

Posted Aug. 17, 2009.

Washington -- The debate over whether chronic Lyme disease exists and how it should be treated has become increasingly contentious in the past few years, even prompting antitrust charges by one state attorney general over treatment guidelines.

A day-long hearing was held July 30 as part of a
voluntary agreement between the Infectious
Diseases Society of America and the Connecticut attorney general for a review of the society's

Those guidelines characterize Lyme disease as an acute infection best treated with antibiotics for a few weeks at most.

In contrast, the International Lyme and Associated Diseases Society recommends long-term treatment with antibiotics for patients with what is called chronic Lyme disease, or post-Lyme disease syndrome, characterized by persistent and severe joint pain, fever and fatigue.

Lyme disease is the most commonly
reported vector-borne illness in the

The number of cases reported to the Centers for
Disease Control and Prevention doubled from about 10,000 cases in 1992 to nearly 20,000 in 2006.

It's not unusual for different medical and scientific groups to take varying clinical positions on specific conditions.

But this disagreement moved beyond the norm when Connecticut Attorney General Richard Blumenthal charged the IDSA with antitrust violations in the drafting of its guidelines, because the recommendations may restrict treatment choices.

Some physicians and patients charged that
insurance companies refused to cover lengthy antibiotic treatment, which they said helped alleviate symptoms of the condition.

During the July 30 hearing, 18 people testified before a panel of eight physicians and one veterinarian on their experiences with Lyme disease. Some patients and physicians said they used antibiotics for months and successfully relieved debilitating symptoms, while others said they had not found any evidence that Lyme disease caused such symptoms.

Panel Chair Carol Baker, MD, an infectious diseases specialist and pediatrician with Texas Children's Hospital in Houston, said the panel intends to decide by the end of the year if the IDSA guidelines need to be revised.

In addition to the testimony, the panelists are
reviewing studies and other submitted documents.

An unprecedented forum

Raphael Stricker, MD, past president of the ILADS, which advocates long-term use of antibiotics for patients with the chronic form of the disease, testified that he would like to see the IDSA guidelines rewritten.

"There is so much in there that is inaccurate or
overstated or based on minimal or wrong evidence that it has to be completely revised," he said in an interview after the hearing.

Dr. Stricker is hopeful that such a revision is
possible. "The panel members seemed genuinely moved by the evidence, and I can only hope that will translate into something that is productive rather than something that is political," he said.

Gary Wormser, MD, chair of the panel that developed the IDSA guidelines in 2006, said he hasn't seen any published data that would change his mind about the IDSA's recommendations.

"If anything, the information to me is stronger in
favor of not treating with antibiotics [for an
indefinite period of time] for people with post-Lyme symptoms," he said.

Phillip Baker, PhD, who served as program officer for the Lyme Disease Research Program at the National Institute of Allergy and Infectious Diseases, supported the IDSA guidelines.

"A major criticism raised by those who oppose the IDSA guidelines is that they fail to provide evidence to support legitimate opposing views, namely that extended antibiotic therapy is beneficial for the treatment of chronic Lyme disease," Dr. Baker said.

"That is not a deliberate omission. The simple fact of the matter is that there is no published evidence -- derived from a well-designed placebo-controlled clinical trial -- to show that such therapy is both beneficial and safe."

Arthur Weinstein, MD, a professor
of medicine at Georgetown
University Medical Center and chief of the rheumatology division at
Washington Hospital Center, both
in Washington, D.C., suggested in
his testimony that post-Lyme
syndrome be grouped with other
common but puzzling conditions
such as fibromyalgia and chronic
fatigue syndrome.

"These syndromes have more in
common than their apparent
differences would suggest and may
be best considered under the rubric
of a functional, or more accurately,
dysfunctional, somatic syndrome,"
he said.


The Lyme disease story

A July 30 hearing in Washington, D.C., was the latest episode in an ongoing saga over dueling guidelines for treating Lyme disease.

Here's a look at key events in the debate in the last few years.

* In 2006, the Infectious Diseases Society of America published updated guidelines on treating Lyme disease. The guidelines contained an expanded discussion and definition of chronic or
post-Lyme syndrome and recommended against ongoing antibiotic therapy for people with this condition.

* The guidelines prompted a protest by patients and physicians who said insurance companies were citing the IDSA guidelines and denying coverage of long-term antibiotic treatment, which they said was necessary to relieve symptoms of
post-Lyme syndrome.

* An antitrust investigation into the IDSA guidelines was launched in 2006 by Connecticut Attorney General Richard Blumenthal.

* The investigation ended in 2008 with the IDSA entering into an agreement with the attorney general to review its guidelines.

* At the July 30 hearing, a panel said it likely would complete its work by the end of the year and announce whether the IDSA guidelines need to be revised. In the meantime, the guidelines, as written, remain in effect.

Copyright 2009 American Medical Association.

Author:  Cog1st [ Mon Aug 17, 2009 8:06 pm ]
Post subject:  Re: interesting article on lyme disease

Yeah the day of the hearing I heard Stricker knocked it out of the park w/his presentation. He is a Lyme-warrior and so great at fighting for us. God bless him.

Wormser, on the other hand, he thinks the evidence shows MORE reason not to treat "post Lyme syndrome"? These Md's that believe this, don't have to treat Lyme - why don't they just go about their business and forget treating Lyme? They obviously don't believe the many thousands of people that have gotten well on long term abx.

Isn't it a joke really? It is so obvious that long term treatment works, it just shows there is something much larger than the treatment guidelines going on. POLITICS is costing people their health and lives.

All diseases are treated long term with something - AIDS, TB, Sarcoidosis and on and on - yet LD which is nearly identical to syphilis doesn't need more than a couple weeks of abx.

We need to generate some power and pray seriously every night about this.

Author:  istherehope [ Tue Aug 18, 2009 5:31 pm ]
Post subject:  Re: interesting article on lyme disease

Yeah, you're right...there's something else going on here... if people like wormser don't believe in treating it, then don't... but stay out of it! why stand in the way... why are people not allowed to make thier own decisions?

look at how some forums are growing, thousands and thousands of people sick with lyme disease, and we've seen people get well... by several means, either abx alone, abx and natural combined, natural alone...what have you... obviously all isn't understood about this disease, so to shoot down everything about it is insaine!

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