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Title: Dr. Steere's Letter Regarding Persistent B. burgdorferi Infection
Entered By: Ira M Maurer/LymeNetDate Created: 10/29/97

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A former patient of Dr. Allen C. Steere received the following letter dated August 11, 1994 extending an invitation to participate in a "long-term follow-up" study of Lyme disease patients. This letter is of great importance to patients who are seeking authorization from their insurance company for continued intravenous and/or oral antibiotic treatment of their chronic Lyme Disease condition. Insurance companies love to quote from Dr. Steere in denial letters. Now patients can counter quote Dr. Steere who, among other things, said in the letter in question:

"It has become increasingly apparent that the Lyme disease spirochete, Borrelia burgdorferi, may persist in some patients for years. Of particular concern, recent studies have shown that the spirochete may persist in the nervous system in a small percentage of patients and may cause chronic neurologic involvement."

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TUFTS UNIVERSITY SCHOOL OF MEDICINE NEW ENGLAND MEDICAL CENTER


August 11, 1994



New London, CT 06320

Dear

We would like to Invite you to participate in long-term follow-up studies of our patients who have had Lyme disease. It has become increasingly apparent that the Lyme disease spirochete, Borrelia burgdorferi, may persist in some patients for years. Of particular concern, recent studies have shown that the spirochete may persist in the nervous system in a small percentage of patients and may cause chronic neurologic involvement. The purpose of our long-term follow-up studies is to determine whether past patients may still have evidence of Lyme disease and, if so, to offer appropriate treatment. These studies are being funded by the National Institutes of Health and the Centers for Disease Control.


As a part of our long-term follow-up studies, we are particularly interested in contacting patients who had facial palsy, or Bell's palsy, as an early neurologic manifestation of Lyme disease. To facilitate this evaluation, we have established a clinic In East Lyme, Connecticut. The evaluation will include a history, physical examination tests of memory, and a blood test to determine your current antibody response to the Lyme disease spirochete. The examinations will be done by Dr. Robert Kalish and Dr. Kathy Workman. They are members of our Lyme disease clinic at New England Medical Center. The entire evaluation should take two hours. This part of the evaluation will be done without cost to you. However, if further testing is needed or if treatment is recommended1 grant funds will not cover these costs.

Elise Taylor, the Clinical Studies Researcher for this project, will be calling you to obtain some preliminary information and to invite your participation in this research effort. If you want to reach her, the telephone number is 617/956-5951. We greatly appreciate your interest in and support of this work.






Allen C. Steere, M.D.
Chief, Rheumatology/Immunology


The Lyme Disease Network of NJ, Inc.
43 Winton Road
East Brunswick, NJ 08816
http://www.lymenet.org/