February 27, 2008
Chronic Lyme Disease Does Not Exist, Study Says
By Abram Katz
Patients across Connecticut and the country are demanding extreme treatments for "chronic Lyme disease," but the condition does not exist, according to a group of scientists from Yale, Harvard, the University of Connecticut and other institutions. Many of the men and women and their children are experiencing profoundly disturbing symptoms, but there is no scientific evidence any are afflicted with a chronic infection of the bacterium that causes Lyme disease, said lead author Dr. Henry M. Feder Jr., professor of family medicine and pediatrics at the UConn Health Center.
Factions of doctors and patients have argued for years over the severity and long-term symptoms of Lyme disease, and this study reignited the debate.
Some physicians prescribe months of intravenous antibiotics, and certain specialists have tried bismuth injections and purposely infecting patients with malaria, to alleviate joint pain, fatigue, headaches, confusion, depression, weakness and other symptoms of chronic Lyme disease.
"I feel for these patients. I want to help these patients. Most of their evidence on the efficacy of treatments are testimonials," Feder said.
Knowing a person who got better after six months of antibiotics, longer than the regimen used to treat tuberculosis, has little significance, he said. Individual stories are short on details, for instance, and it's difficult to assess the patient's health.
Feder and colleagues reviewed scientifically rigorous studies on chronic Lyme disease in peer-reviewed journals, and results were published in today's New England Journal of Medicine.
Lyme disease activists who read the study said they are far from impressed.
"Most of us realize it's the same old, same old. This is the same cast of characters" who've questioned chronic Lyme for years, said Pat Smith, president of the Lyme Disease Association. "There is indeed scientific literature that Lyme disease can be persistent," she said. "Science, unfortunately, does not have all of the answers."
Smith said the study contains a glaring editorial error by failing to make explicit that some of the authors contributed to the Infectious Diseases Society of America, which issued guidelines for Lyme disease treatment.
State Attorney General Richard Blumenthal launched an anti-trust investigation about a year ago into the IDSA because the guidelines recommend against the long-term antibiotic treatments that certain physicians use.
"What we need is long-term research. In the meantime, you can't hang these patients out to dry without treatment. Physicians who do treat, their patients get better," Smith said.
However, researchers found long-term antibiotic therapy did not relieve symptoms any better than an inert sugar pill.
Feder said antibiotics may have other properties that help patients. For example, doxycycline, often used in treatment, also has anti-inflammatory properties that might soothe inflamed joints.
"You can't prove a negative, so we looked for primary sources of chronic Lyme disease," he said.
Evidence of bacteria would constitute evidence of persistent infection. But Feder said studies of chronic Lyme disease could not find any signs of the disease-causing spirochete in joint or spinal fluid of patients with chronic Lyme disease.
There is a condition called late Lyme disease that develops when the infection with Borrelia burgdorferi goes untreated for weeks or months. Generally, these cases resolve after treatment, although it may take patients up to six months to feel better, Feder said.
Research also suggests 1 in 10 patients with Lyme disease carries genes that predispose him or her to an autoimmune response to Lyme bacteria. In this relatively small number of cases, damage may not heal, Feder said.
Study after study indicates patients with chronic Lyme disease have no bacteria, bacterial DNA or antibodies.
Feder said there may be an as yet unidentified disease that receives blame for chronic Lyme disease, lingering symptoms of mononucleosis, chronic fatigue syndrome and other conditions that persist after an illness.
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