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Doc probes mystery of chronic Lyme disease

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County urges awareness to avoid ‘devastating’ illness

KINDERHOOK–Who was that psychiatrist and why does he want so much local blood?

   The blood–8 tubes from each of the 150 volunteers who showed up at Town Hall in Niverville and at the Livingston Town Hall Sunday, July 12, is being used for a research project under the direction of Brian A. Fallon, MD, the director of the Lyme and Tick-Borne Diseases Research Center at the Columbia University Medical Center in Manhattan. The donors are adults who have been diagnosed with or believe they’ve had Lyme disease. The blood samples were collected here and in Dutchess County, Norwalk, Conn., and Basking Ridge, N.J., and researchers hope that combined with the health histories of the volunteers, the samples will provide the raw material for future development of tests for the illness and for new treatments for chronic Lyme disease.

 

 

   Columbia County was a logical place to start. Although the county Department of Health is not involved in the study being conducted by Dr. Fallon, the department’s Paul Phillippe, RN, says that 2008 was a “record year” for Lyme disease in the county, with the state recording 584 confirmed or probable cases of the illness, which is transmitted to humans by deer ticks. The county had the highest per-capita incidence of the illness in the state, and in previous years has had the unwelcome distinction of having the highest incidence in the nation.

   About 150 cases were recorded in the first six months of this year, a lower rate than last year, although Mr. Phillippe is not certain what’s behind this year’s statistics, though he suggests that it might have to do with the cool, rainy weather keeping people inside at a time of year when they might otherwise be picnicking and hiking and engaged in other activities that bring them into contact with the deer ticks that infect humans with Lyme disease.

   The blood samples being collected in the study could eventually help resolve one of the persistent questions that health agencies, physicians and patients face: the nature of chronic Lyme disease. Dr. Fallon said that chronic Lyme disease is a “poorly defined term,” despite the patients who report that symptoms like pain, fatigue and a list of potentially severe neurological maladies that continue long after tests show no trace of the organism responsible for the illness.

   The National Institute of Allergies and Infectious Diseases, a part of the National Institutes of Health, agrees. Its website calls chronic Lyme disease a “very confusing” term and uses instead the term post Lyme disease syndrome.

   The neurological aspects of the illness are one reason Dr. Fallon is engaged in this research; he is an associate professor of clinical psychiatry at Columbia University Medical Center who holds a public health degree and has studied biological psychiatry. The center’s website describes it as “the first academic research center in the country to focus multidisciplinary research on chronic Lyme disease.”

   Each of the volunteers in his study was given what Dr. Fallon described as the best available test for a quick diagnosis of Lyme disease, the C6 ELISA test. ELISA is an acronym for the type of test, “enzyme-linked immunosorbent assay,” which measures antibodies to the illness in the bloodstream. The C6 is a reference to a protein linked to Borrelia burgdorferi, the spirochete bacteria that causes Lyme disease. Dr. Fallon said the C6 ELISA test is “still not perfect, but it’s good enough” for this research. All of the available blood screening tests have their limits, which includes the prospect that even if a patient receives a result that positively identifies the presence of the Lyme disease antibody, “it doesn’t mean you have Lyme disease.”

   Looking at blood samples under a microscope, a time-consuming and expensive process, is the “gold standard” of testing, said Dr. Fallon. Yet that too has not unraveled the mystery of the persistent effects of chronic Lyme disease, because the symptoms occur in the absence of any evidence that the bacterium is still present.

   One patient in Columbia County said her symptoms–serious headaches and neck pain, which she has had since she first diagnosed with Lyme disease a decade ago–subside only after she takes large doses of antibiotics. The problem she faces is that taking such strong medication for a prolonged period of time comes with its own risks.

   Dr. Fallon said that having a more accurate test will permit a more accurate diagnosis, establishing “definitively it’s a current infection,” which makes it clearer when physicians should prescribe antibiotics. It may also help answer the question of whether chronic Lyme disease involves the presence of the bacterium or is triggered by some other mechanism.

   The samples and the histories will be made available to pharmaceutical firms and other researchers working on treatments and tests for Lyme disease. He expects the results from his study’s collection of samples will be ready in about six months, although he said it involved a “massive amount of work,” not least because the response from volunteer subjects was much larger than he anticipated. He thanked all those who turned out at the local test sites, saying the turnout was much larger than he had anticipated. He estimated the testing study will cost about $100,000.

   Regardless of what the research shows, the county Department of Health urges people to “be tick free” when they are outdoors, with Mr. Phillppe issuing a reminder in a recent press release that the summer is the time for people to learn what they need to do to protect themselves against tick-borne diseases.

   He said Lyme disease can be a “devastating disease,” explaining that the illness “may affect the skin, nervous system, heart and/or joints. If not treated early, it can have permanent and severe health effects.”

   In tick-infested areas like Columbia County, any contact with vegetation, even playing in the yard, can result in exposure to ticks.

   “We’re really focusing on awareness, especially if you’ve been out walking,” Mr. Phillippe said in a phone interview last week. He advised people who find they have the telltale “bulls eye rash” not necessarily at the site of a tick bite but a symptom that appears in about 60% of Lyme disease cases: “You don’t want to wait” to seek medical help.

    To learn more about the use of repellents, how to do a tick check, how to remove a tick and the symptoms of tick-borne diseases, call the county Lyme disease Information Line at (518) 828-7539 or the Columbia County Health Department 8 a.m. to 4 p.m., Monday through Friday at (518) 828-3358.

    More information on the project and the Lyme and Tick-Borne Diseases Research Center at the Columbia University Medical Center is available at the website www.columbia-lyme.org.

 

   To contact Parry Teasdale email pteasdale@ColumbiaPaper.com

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