Infectious-disease experts say Lyme, once diagnosed, follows a predictable pattern. A short course of antibiotics kills the bacteria, and most people promptly recover. And if the bacteria has already spread, symptoms may linger, but they'll eventually go away, says Henry Feder Jr., M.D., a Lyme expert at the University of Connecticut Health Center.
Yet some patients report persistent symptoms weeks or months later. "We call it post-Lyme syndrome," says Feder. Studies indicate these patients no longer have active infections and present symptoms that might arise from other maladies. No one denies they're sick, but their symptoms haven't been firmly linked to Lyme, says Gary Wormser, M.D., chief of infectious diseases at New York Medical College. Furthermore, he says, overusing antibiotics could help spawn drug-resistant "superbugs."
Such positions infuriate Pat Smith, president of the Lyme Disease Association (LDA). "We believe it's a chronic disease and antibiotics help ameliorate the symptoms," she says. The LDA and the International Lyme and Associated Diseases Society, a group comprising mostly private physicians, assert that people with lingering symptoms have chronic Lyme and may require months of IV antibiotic therapy. These advocacy groups claim the CDC's criteria for diagnosing Lyme are too stringent, and that lab tests often miss cases of the disease. Smith admits antibiotics are no cure-all, but says it's the only treatment these people have.
A 2001 study published in the New England Journal of Medicine compared a 3-month antibiotic treatment to a placebo in patients with documented Lyme and lingering symptoms. Those who got drugs didn't improve more than those given placebos. "The study should have put chronic Lyme theories to sleep," says Feder. "But it didn't."
In February, the CDC issued a warning that some labs were using unproven tests to diagnose Lyme. Anyone who is told they have chronic Lyme needs a second opinion, says Dr. Wormser. "In most studies, over 50 percent of patients who carry this diagnosis never had any evidence of Lyme whatsoever." Leonard Sigal, M.D., director of the Lyme Disease Center at the Robert Wood Johnson Medical School, says that a cottage industry has sprung up under physicians with diagnostic criteria so loose that anyone with fatigue could become a Lyme patient.
Sigal insists he's trying to save patients from futile, potentially harmful therapies that stop them from finding the true cause of their symptoms. He and other Lyme researchers have been threatened by patients who insist on long-term antibiotics. But that hasn't altered their views. "I just wish medical science had more to offer," Feder says.