Panel upholds controversial Lyme disease guidelines

The Infectious Diseases Society of America, which sets treatment guidelines for dozens of infectious diseases, voted to maintain its 2006 standards for Lyme disease. Those recommendations were spurned by activist patients, led to an antitrust investigation, and triggered one of the hottest controversies in medicine.

"No changes or revisions to the 2006 Lyme guidelines are necessary at this time," said the panel's chairwoman, Dr. Carol Baker of the Baylor College of Medicine in Houston, during a news briefing.

As it did in 2006, the society endorsed short-term antibiotic therapy to treat the bacterial infection transmitted by ticks. And again, it underscored that the extended antibiotic treatment is "untested and potentially dangerous."

That endorsement rejects the notion of what is widely known as "chronic Lyme disease," despite a cadre of patients who say they've been suffering from Lyme and related infections for years, even decades.

An eight-member panel of experts, specially chosen to review the 69 guidelines, spent more than a year analyzing the rules in light of evidence from major scientific studies.

Skeptics of the group's 2006 recommendations were disappointed.

"To be honest I am not really surprised. I had a feeling they wouldn't change a thing," said Karen Hassan, a Brookhaven, N.Y., resident and member of the Empire State Lyme disease Association, which vocally opposed the guidelines four years ago.

Hassan said her son Daniel, 25, has been affected by Lyme disease since he was 13. The infection, she said, has led to seizures and the need for anticonvulsant medications. Hassan added her biggest obstacle has been physicians who don't believe Lyme is persistent. "I am just totally flummoxed that they can't see it," she said.

Thursday's recommendations came about as the result of an antitrust investigation begun in 2007 by Connecticut Attorney General Richard Blumenthal. Blumenthal found that the guidelines' authors had conflicts of interest, such as financial stakes in companies involved in tests or treatments for Lyme disease.

The infectious disease society agreed to a one-time review of its guidelines by an independent scientific review panel

Doctors say some patients and politicians failed to understand the science underlying Lyme disease.

Dr. Sharon Nachman, an infectious disease specialist at Stony Brook University, said the panel went through "every shred of data," to make sure the guidelines are in patients' best interest. There is no bacterial infection, she added, that would require lifelong antibiotics. Taking drugs that way, she added, can prove toxic.

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