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The Voices of Lyme (VOL)

Sue Huesken
Palmyra, NJ

Susan Macnamee
Perkasie, PA

Megan O'Connell
Penn State College, PA

Marleen Oetzel
Claymont, DE


Patients will gather on Nov 1. From 11:30 AM - 2:00 PM outside Pennsylvania Convention Center, between 11th and 13th Streets, Philadelphia, PA in a continuing effort to question the education practices of Lyme physician, Allen Steere, MD. He will be giving a lecture at 35th Annual Meeting of the American College of Rheumatology & Association's of Rheumatology Health Professionals.

Medical bias in favor of one treatment approach for Lyme disease is charged.

Lyme disease, a tick-borne infection, rivals AIDS as one of the fastest growing infectious diseases in the US. With over 16,000 cases reported in 1999, the actual figure may be 10 times that according to the CDC. Although publicized chiefly on the East coast, the illness occurs nationwide as worldwide.

Allen Steere, credited for naming Lyme disease a quarter century ago, has brought his "overdiagnosis and Overtreatment" school of thought to such overriding status that disagreeing physicians, researchers and patients have been adversely affected. Patients are turned away, denigrated publicly, and denied adequate treatment and insurance coverage. Physician harassment has lead to loss of license, practice and fear of sanctions unless Steere's guidelines are followed. Federal research money is directed to Steere followers.

In 1999, demonstrators protested the honoring of Steere as an "Astute Clinician" at the NIH. In the past year, 50 complaints against this physician have been filed in Massachusetts. A GAO investigation of the NIH and CDC in regard to funding and treatment guidelines has been called for. A growing movement by patients, physicians and supporters to end abuses based entirely on Steere's guidelines has reached a fever pitch.

Patients will present information indicating Steere's approaches are stringent and unyielding, and actively ignore a growing body of scientific evidence that indicate Lyme can present as persisting infection that requires open-ended treatment.

"Steere's "overdiagnosis and Overtreatment" school of thought promotes narrow, ethically suspect viewpoints and medical guidelines, which more and more, ignore a growing body of scientific evidence and patient tragedy." - Marleen Oetzel, patient advocate


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