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 — Posted Aug. 17, 2009

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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.

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.

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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.

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