I am absolutely bewildered over this debate, and I hope that Attorney General Blumenthal takes the infectious disease industry to public outrage over their attitudes and personal opinions regarding this issue. I live in an epidemic area in the northeast. Three years ago, I had three bulls-eye rashes in one summer, even though I was taking all the necessary precautions. I live on a farm; our work is outside; remaining safely inside a house or office (like many physicians) is not an option. As each rash appeared, I became INCREDIBLY ill. I was prescribed antibiotics and was assured that one course for each rash was sufficient, and I felt confident all would be fine, even though I had this feeling that this infection was not completely eradicated, or I was unfortunate enough to be reinfected without the obvious bulls-eye rash. Now, three years later, late-stage symptoms have appeared, and once, again, I went back to my doctor. After several weeks of antibiotic therapy, I feel MUCH better; but my primary care physician referred me to an infectious disease group because of his obvious concerns and neurological involvement. Much to our shock, when my physician called a well-known and respected infectious disease group in our region, the "aid" in the office reviewed my records and told us that the infectious disease group was rejecting my case and would not accept me as a patient since they don't think I have Lyme. I've had three bulls eye rashes and three years of looming sickness. I just want to be healthy and cured; I don't want to be thrown into a ridiculous and unethical power struggle. Shame on the ALL the physicians who refuse to remain open minded and objective. A family member, a physician himself, said, "There is ALWAYS an infectious disease out there that we don't know about yet." This may be it. Maybe what we have labeled as "Lyme" is another, more aggressive, tick-borne illness yet identified. But how will we know if these physicians are now refusing to see patients, like me, who have symtoms that point to the now taboo label of "Lyme," and who are spending an inordinate amount of time posturing for their positions on this issue. For what purpose, really? I can say one thing for sure: not one of these physicians denouncing the validity of this disease has ever been bit by a tick.
The Great Lyme Debate
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There's a debate raging over Lyme disease, although you'd never know it unless you've been paying close attention—because on the surface it sounds like the dullest argument imaginable. Last year, the Infectious Diseases Society of America issued new guidelines saying physicians should treat Lyme with antibiotics for no longer than 30 days. Some docs think that's wrong. It's a seemingly straightforward difference of opinion. So why has the debate dissolved into animosity, with one side suggesting that its opponents have no credibility and the other slinging deeply personal insults on the Web? And why has it now spilled out of medical journals and into the office of a state attorney general? Clearly, something other than ticks is bugging a lot of doctors.
Lyme disease—the most common insect-borne ailment in America, with roughly 20,000 cases diagnosed each year and more undetected—is transmitted mostly by a well-known pest, the deer tick. But the real culprit is something even nastier, a bacterium called Borrelia burgdorferi that lives in the tick's gut. When Borrelia infiltrates the human body, it can cause a suite of distinctive symptoms, most notably a flulike feeling and a red rash like a bull's-eye. Sometimes, though, it causes no symptoms at all, and that's more dangerous, because the early signs are the only warnings doctors have. If Lyme is left undiagnosed and untreated, its consequences can be serious, including arthritis, meningitis, heart problems and inflammation of the brain. "The real secret," says Dr. Michael Zimring, director of the Center for Wilderness and Travel Medicine at Mercy Medical Center in Baltimore, "is to be able to recognize the disease early enough."
Zimring would know. Several years ago his wife felt fluish and came down with an oval-shaped rash. Zimring wasn't sure what she had, but "knowing our backyard is loaded with ticks was enough," he says. He started his wife right away on one of the classic, effective antibiotics used to treat Lyme. When her medical tests came back, they proved him right. "I treated her for three weeks," he says, "and that was it. No problem."
Unfortunately, not all Lyme patients recover so easily. And that's what's at the heart of the debate—some docs think patients who are treated inadequately can develop a chronic form of the disease, while others deny that it's possible. Dr. Rafael Stricker, president of the International Lyme and Associated Diseases Society, believes in "chronic Lyme disease," and he says that in his clinical experience about 70 percent of patients with it get better if they're treated long term with the same drugs used to treat early infection. But the doctors who made the new IDSA guidelines on treatment say there's no such thing as chronic Lyme, because in most patients who complain of it, Borrelia isn't detectable in the body. Dr. Gary Wormser, who chaired the IDSA panel, prefers the term "post-Lyme syndrome." Treating that syndrome with high-dose antibiotics for months—as some physicians did before the new guidelines—can only hurt patients, he says. It can give them gallstones and infections and lead to antibiotic resistance while not curing anything. "The majority of patients treated for 'chronic Lyme' do not have post-Lyme," he says, "and in fact never, ever had Lyme disease at all."
This does not sit well with thousands of patients who believe they do have chronic Lyme and badly want antibiotic treatment for it. "The IDSA is basically saying to them, 'We're right, you're wrong, we don't want to listen to you, just take some antidepressants and go away'," says Stricker. The IDSA is a highly respected group of doctors. But it's facing formidable opposition, not just from Stricker's group (and angry patients who've taken to Internet message boards) but also from the attorney general's office in Connecticut, the state with the country's highest incidence of Lyme disease. A.G. Richard Blumenthal has launched an investigation of the IDSA panel, looking into whether it ignored any research that would support long-term antibiotic treatment (the guidelines cite more than 400 studies). "Our question basically is whether the guidelines were formulated through a process that was proper, without self-interest or conflicts of interest," Blumenthal says, noting that some of the panel members have financial interests in treatments and vaccines. Blumenthal also worries that the new guidelines might be used by insurance companies looking to avoid paying for Lyme drugs. The investigation is at "an important juncture," he says.
Meanwhile, Wormser is baffled. "How could the interests of the patient be served by treating with unnecessary and potentially dangerous therapies?" he says. "The guidelines represent the best that medical science has to offer." The question, then, is whether that's good enough.
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