Type "Lyme disease" into your computer's search engine and you'll find yourself in Oliver Stone territory: There are literally hundreds of belligerent chat rooms and support groups for patients who think they were misdiagnosed or insist their Lyme disease just never went away. That an awful lot of people are out there suffering isn't news. But dissension has reached the highest levels, with doctors and researchers dividing into two vengeful and bitter camps about how to cure Lyme.
In one corner is a group of those predominantly university-based physicians who develop drugs, receive research grants from federal health agencies, and often advise insurance companies. They contend that Lyme is usually simple to diagnose and easily curable with two to four weeks of oral antibiotics. Chronic Lyme, they say, is extremely rare, not a disease but merely a group of symptoms remaining after the initial infection is treated that usually disperse.
In the other corner stands a group of primary-care doctors, those on the front lines who see Lyme patients every day, and a number of other scientists -- all of whom maintain that the illness is far more complicated. Late-term or lingering cases of Lyme disease, they say, may require six months or more of oral antibiotic therapy and intense intravenous therapy -- which some like to administer in a hyperbaric chamber. They believe that the increased oxygen of the chamber helps kill the tenacious spirochetes -- known as Borrelia burgdorferi -- deposited by the blood-sucking deer tick. Burrowing rapidly into the tissues, joints, and central nervous system, borrelia slightly resembles the syphilis spirochete in the way it feeds, sleeps, and reproduces.
Detractors have accused the more aggressive camp of overdiagnosing and overtreating patients. But lately, they're going even further: Some of the fourteen "Lyme literate" M.D.'s (as they're known to their supporters) in five states who have been targeted for investigation by state health departments have already lost their licenses. Others may be about to. Insurance companies have taken to not covering the treatments, and doctors are thinking twice before accepting any patient with Lyme symptoms.
"Doctors are prescribing long-term oral antibiotics and IV therapy, which some administer in a hyperbaric chamber. Critics say patients feel better after the chamber only because they're high on all that oxygen."
By far the most renowned of the fourteen is Dr. Joseph Burrascano, of East Hampton, who for the past fifteen years has treated thousands of Lyme patients from all over the world. Having openly attacked the conservative academic coalition for what he sees as its failure to come to terms with the realities of the disease, Burrascano has made few friends within the Lyme Establishment. That's why, he believes, he's now been put on notice by the New York State Department of Health's Office of Professional Medical Conduct (OPMC), where investigators are preparing for an as-yet-unscheduled disciplinary hearing. Aside from the general accusation of professional misconduct, Burrascano has still not been informed of the specific charges against him.
No one disputes the classic symptoms and treatment of early Lyme disease: The patient has recently been near a woodsy area and sometimes develops a bull's-eye-shaped rash two inches or more in diameter and flulike symptoms. A blood test shows evidence of borrelia, and a short course of oral antibiotics is administered.
But there are those who don't fit this model: Since borrelia lives in tissues, not blood fluids, the two standard blood tests -- elisa and the Western Blot -- can measure the body's reaction to the germ only by finding antibodies and not the germ itself. Too often, there are false positives or negatives; some say the rate of inaccuracy on both tests can be as high as 40 percent.
Those who do receive the basic treatment for Lyme disease -- and appear to be cured -- have been known to become ill again. But is this a relapse? A reinfection? An entirely different syndrome? Doctors can't seem to agree on whether it's 5 percent or 20 percent of all Lyme patients who go on to manifest chronic symptoms.
People whose blood tests are repeatedly negative and who don't manifest standard symptoms simply don't have Lyme, say the more conservative doctors. But Burrascano and his colleagues note that victims whose symptoms don't match the classic criteria are left out of National Institute of Health studies and omitted from vital Centers for Disease Control statistics.
Later-stage Lyme patients may be told they've been cured but are now suffering from post-Lyme syndrome, a lingering set of autoimmune symptoms triggered by the original, defunct infection. Antibiotics are not prescribed for this condition. Doctors like Burrascano say "post-Lyme syndrome" is nonsense: The infection simply never went away and requires more antibiotics. (Of course, insurance companies prefer the post-Lyme diagnosis, which requires that no further drugs be administered.) Patients who continue to deteriorate and have negative blood tests may be told to see a shrink.
Pat Pepper says she was never initially treated for any Lyme infection. Suffering from a sore throat and intense headaches, the blonde former mayor of West Palm Beach who now divides her time between Miami and New York was growing progressively weaker. Pepper consulted more than 30 leading neurologists and internists. All the doctors told her she had incurable, fatal amyotrophic lateral sclerosis (Lou Gehrig's disease) and had only two to five years to live; after all, she'd had seven negative Lyme tests.