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Dissenting Docs |
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NEW YORK, June 4 - Dr. Allen Steere can't seem to make a public appearance these days without a stream of protesters trailing behind. And this past Thursday in New York was no different. Outside the Pierre Hotel, where Steere was being honored on the 25th anniversary of his discovery of the tick-borne infection known as Lyme disease, 200 protesters carried signs reading "Bum Steere" and "Ticked off!" They chanted, "Down with Steere!" The protesters, all of whom say they have Lyme disease, say Steere is at the forefront of a medical community that downplays the long-term, chronic effects of the infection. They blame Lyme disease for symptoms ranging from disabling joint pain to severe memory loss to depression - symptoms they say can only be relieved with long-term use of antibiotics. Is Lyme Disease Chronic? Richard Brand, a Lyme disease sufferer and a doctor, says: "I've met a million patients online and I've met them personally. I've seen them in my office. I know long-term Lyme disease really exists. We test. We find it. So I'm anti-Steere." But most doctors say Brand and his fellow protesters are mistaken. They say that while Lyme disease does cause mild joint pain and fatigue, those symptoms are relieved, and the infection completely cured, with just 30 to 60 days of antibiotics being administered. They say anyone who is sick for longer than that, and with more severe symptoms, must be suffering from something else. Steere says he's had enough public attention and declined to be interviewed. Dr. Eugene Shapiro of the Yale University School of Medicine says some people are blaming Lyme disease for symptoms that stem from other conditions, many of them psychological. "The myth is Lyme disease can cause any symptom known to man and the idea that you can take a pill to solve whatever problem you have or whatever symptom you have is appealing and more socially acceptable than dealing with psychological problems, depression, and other problems," Shapiro says. But a handful of doctors, most of them in the Northeast, where the disease is most prevalent, insist that Lyme disease is a chronic infection with a range of physical and psychological effects. And they say those effects can only be treated with years of antibiotics.
"This is a very complex infection that has many modes of evading destruction by antibiotics, and I think the infection has been greatly underestimated," says Dr. Kenneth Liegner, a Lyme disease specialist based in Armonk, N.Y. His patients include Jackie and Ted Eliopoulos and their daughter. The Eliopouloses blame Lyme disease for their daughter's psychiatric problems, Ted's severe memory loss and Jackie's nasty headaches, nausea, excruciating joint pain and dizziness. Liegner has kept all three of them on high doses of antibiotics for years. "This is a disease that people fear. It's not something that we've made up," says Jackie Eliopoulos. Doctors, Patients Worried The dispute has become much more than a difference of medical opinion. At least a dozen doctors who treat chronic Lyme disease with long-term antibiotics are now under investigation by their state medical boards. That worries patients, who say the disease would ruin their lives if it wasn't for long-term, aggressive treatment. "Its scares me so badly that I had to fight to get antibiotics in the first place and that my access to them could be cut off," says Stephanie Reisin of Rye, N.Y. Eileen McInerny, a Lyme disease sufferer and a doctor from New Jersey, is plagued by similar fears. "I'm afraid if my doctor loses his license, I'll have nowhere to go," she says. The controversy comes as the number of Lyme disease cases is on the rise. According to the Centers for Disease Control and Prevention, there were 16,800 reported cases of Lyme disease around the country in 1998, the latest year for which there is complete data. That was up from 12,800 cases a year earlier. And the CDC says the actual number could be 10 times that. "Here we are in the middle of an epidemic where patients are desperate. These people are truly suffering and they cannot get help," says Liegner. The National Institutes of Health is now funding two multimillion-dollar studies to settle once and for all whether chronic Lyme disease actually exists and whether sufferers benefit from long-term use of antibiotics. Results are years away. |
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