Panel hears conflicting views on Lyme disease treatment

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Panel hears conflicting views on Lyme disease treatment

_http://www.ama-assn.org/amednews/2009/08/17/prsb0817.htm_

(http://www.ama-assn.org/amednews/2009/08/17/prsb0817.htm)

 

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 guidelines. 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

nation.

 

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.

 

 

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

U.S.

 

 

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.

 

 

This content was published online only.

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ADDITIONAL INFORMATION:

 

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.