Excerpt from Germ Warfare
by Rusty Unger
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.
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.
Pepper eventually took more expensive, more exacting tests that looked for the presence of spirochete DNA or the outer membranes shed by spirochetes. These tests immediately revealed rampant borrelia infection. (Animal inoculation, which is injecting an animal with fluid from the Lyme victim, then analyzing its tissues in an autopsy or biopsy, is another method.) Pat Pepper was finally wheeled into Dr. Burrascano’s office, nearly quadriplegic.
Burrascano warns patients that their symptoms may get much worse during his treatment before they get better because spirochetes put up a nasty fight. Spirochetes in the dormant phase of their reproductive cycle (ranging from ten months to fourteen years) survive the antibiotics,which is why it takes many courses to obliterate them all, says Burrascano. Though his treatment usually takes from one to six months, it was a year before the spirochetes completely disappeared from Pepper’s blood tests. “Since July of ’98, when I first saw Dr. Burrascano, my health, for the first time in seven years, has been improving,” says Pepper, who recently graduated from her wheelchair to a walker.
Lyme disease was identified by Yale University’s Dr. Allen Steere in 1975. An epidemiologist with a background in rheumatology, Steere studied a group of Lyme, Connecticut, children who seemed to have a new kind of arthritis. Six years later, “Lyme arthritis” was instead proved to be a bacterial infection. But by that time, the NIH had assigned Lyme’s research funding to its arthritis branch. Critics say this branch remains biased toward research related to arthritis, inflammatory conditions, and auto-immune disorders; doctors and scientists pursuing Lyme research related to infectious diseases find it difficult to receive NIH funding.
Dr. Raymond Dattwyler, professor of medicine and chief of Stony Brook University Medical Center’s Division of Allergy and Clinical Immunology as well as of its Lyme Disease Center, insists, “There has been no clinical trial that demonstrates long-term treatment [of Lyme] is beneficial.” “There’s a bibliography of over 60 different scientific studies in worldwide medical literature,” counters Burrascano, a boyish 48-year-old, “showing that in people who are still sick after the standard treatment, when you do these more advanced tests, you find that, by and large, they’re still infected.”
Some argue that Burrascano’s tests are no more statistically reliable than the standard ones. Further, there are risks associated with lengthy antibiotic treatment — phlebitis, sepsis, colitis, allergies, gallstones, and liver damage. Patients feel better after the hyperbaric chamber , they say, because they’re high on all thatoxygen. People who complain they have continuing symptoms may think they have chronic Lyme because out of eleven blood tests, one showed a weak positive result, according to one Manhattan physician who sees a lot of Lyme. But the truth is that this result is most likely a false positive. “Prescribing long-term antibiotics would be like giving them chemotherapy for high blood pressure,” says this physician, who’s seen patients diagnosed with Lyme when they actually had Parkinson’s or MS: “It was terrible to disappoint them.” The doctor spoke under the condition of anonymity because “the whole field of Lyme disease is way too political.”
Studies cited by the conservative doctors have run in publications like the JAMA; Burrascano and his colleagues quote distinguished yet less familiar journals, many of them foreign. “There are three spirochetes that cause Lyme disease in Europe, only one of which exists here in North America,” says Dattwyler. “That’s why you can’t directly correlate this European research to North America.”
Clearly, there isn’t enough definitive research to tip the balance in either direction. But an ethics probe probably can. Dr. Perry Orens expanded his general and cardiac Great Neck practice to include Lyme patients after his daughter contracted the disease (and was cured by Burrascano in 1986). He lost his license to practice medicine in November after an OPMC hearing; protestors showed up with placards outside. “Ordering excessive tests and/or treatment and inaccurate patient records” were among the hearing’s findings, typical charges in such cases. (Orens was also found guilty of gross negligence and fraud.)
Dr. Dattwyler, who testified as a Lyme-disease expert, says the finding of misconduct “had nothing to do with Lyme. . . . It was about inappropriately medicating a [chronic Lyme] patient who almost died as a result.” In 1993, Burrascano accused NIH and CDC Lyme-disease grant recipients of improprieties at a Senate committee hearing on Lyme research. Funding was being directed toward rheumatologic and arthritic autoimmune problems he alleged, and some post-Lyme-syndrome advocates who were taking the grants had worked as paid medical consultants for insurance companies. Shortly thereafter, the OPMC began investigating Burrascano; he has had to turn over his records three times and submit to formal interviews twice. Each time, the investigation was left open — which many say is highly unusual.
For Burrascano’s defense, his lawyers may cite two new NIH grants for research toward determining why some patients don’t recover after the standard antibiotic treatment. One of the grantees is Arthur Weinstein, a conservative physician and professor of medicine and chief of the Division of Rheumatic Diseases and Immunology at New York Medical College. Weinstein helped develop current standards for Lyme testing. “Lyme patients claim to feel better on antibiotics and relapse when they stop,”Weinstein has said. “But this is not typical in treating other infections.” He’ll try to discover whether the bugs are hiding and start growing again when the antibiotics are stopped, or patients are really just experiencing a placebo effect. It’s also possible that protracted antibiotic use doesn’t kill bugs but merely has some other chemical effect on the brain.
Burrascano isn’t pleased that a member of the conservative faction is running this study. But he does agree that this commission is notionally helpful, confirming that there is some debate about what this illness is and what its treatment should be. “Everything I do is based on articles and literature and my observations and those of my colleagues,” he says. “I don’t do crazy things. I don’t sell drugs or get kickbacks from the companies promoting the drugs. I do it because it’s right.”