Experts reaffirm 2006 guidelines on Lyme disease

The group of experts that sets treatment standards for Lyme disease reaffirmed its 2006 guidelines Thursday, to the dismay of activist patients who had hoped for changes.

The Infectious Diseases Society of America, which sets treatment guidelines for dozens of infectious conditions, voted to maintain its 2006 recommendations. Those had been spurned by a small but vocal group of Lyme sufferers and had led to an antitrust investigation, triggering one of the hottest controversies in medicine.

The move is likely to fuel a continuing debate on whether the disease is chronic and whether it's appropriate to prescribe long-term antibiotics to combat the infection.

"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 resident and member of the Empire State Lyme Disease Association, which opposed the guidelines vocally 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 that 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.

Suffolk County Legis. Edward P. Romaine (R-Center Moriches) also voiced dismay over the panel's decision. He, too, believes chronic, lifelong Lyme disease is real and requires long-term antibiotic therapy for some patients. He said Shelter Island, Manorville and Fire Island are hotbeds of tick activity.

"One-size treatment does not fit all," said Romaine, who adds that he himself was bitten by a tick and developed Lyme disease a few years ago. He did not develop so-called chronic Lyme.

Thursday's decision came about as the result of an antitrust investigation begun in 2007 by Connecticut Attorney General Richard Blumenthal. He 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.

Lyme on Long Island

Common deer ticks, which are found in shady, brushy areas, can carry the bacterium, Borrelia burgdorferi, which causes Lyme disease. The U.S. Centers for Disease Control and Prevention has identified New York as one several states that are endemic for the infection.

A breakdown of cases in recent years:

NASSAU COUNTY:

2006 - 116 cases

2007 - 104 cases

2008 - 41 cases

2009 - 121 cases

SUFFOLK COUNTY:

2006 - 190

2007 - 234

2008 - 542