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Perceptions

Perceptions

In the September 2006 issue, we ran an article on neurologic Lyme disease ("Two Opposing Camps Offer Insight Into Treatment of Neurologic Lyme Disease," pages 44-46). I had an interest in placing the article because I've known quite a few persons who have had prolonged bouts with the disease, including a cousin who landed in the hospital with psychotic symptoms.

Because we are an open-access journal, anyone performing a Web search can stumble upon articles that have appeared in Applied Neurology. Thus, we've begun to receive provocative letters from persons who have sought treatment for Lyme disease.

"Lyme disease should be on the differential diagnosis of anyone suffering with neurologic issues 'whether or not the person has spent time in a tick-ridden area,'" wrote Christina Caskey of Flagstaff, Arizona, quoting a portion of the Applied Neurology article on the subject. She recounted a harrowing odyssey of symptom expression and reported that she had consulted 4 neurologists; none suspected Lyme disease. When she suggested to the fourth neurologist that Lyme disease might be the diagnosis, "he rolled his eyes." Indeed, one neurologist allegedly told her, "I only treat nerves. If your stomach or joints are bothering you, you need to see someone else."

Caskey related that she went from being an athletic person who took 17-mile runs up and down mountains to being someone who had to lean against a wall to stand upright. She also noted that her medical expenses in 2005 came to $65,000 as a consequence of disability and misdiagnosis.

Caskey eventually found specialists who treated her according to guidelines set by the International Lyme and Associated Diseases Society (ILADS), the views of which--as discussed in the September issue's article--butt heads with that of another leading advocacy group, the Infectious Diseases Society of America (IDSA). Lee Lull, who identified herself as the Marin County, California, Lyme Disease Support Group Coordinator, and Phyllis Mervin, president of the California Lyme Disease Association in Ukiah, both made special note of this in their letters to Applied Neurology. Both Lull and Mervin, like Caskey, related their frustrations with care providers and reported back data they had gleaned from the literature about controversies regarding sensitivity and specificity of Lyme disease tests and empirical treatment based on clinical findings. "I am forever grateful to the physician who treated me in the face of mainstream medicine disapproval," Lull wrote, referring to the controversy between the ILADS and IDSA views. Mervin voiced the same sentiment.

Indeed, the controversy was set aflame this past October when the president of ILADS, Raphael Stricker, MD, submitted a formal request1 to the editor of Clinical Infectious Diseases that an article on IDSA guidelines for the diagnosis and management of Lyme disease that was published online ahead of print and then in the November 2006 issue of the journal2 be retracted. Stricker's letter includes a point-by-point addendum that challenges points made in the guidelines paper. The documents--Stricker's letter and the IDSA guidelines--are available online at www.ilads.org/files/press_release_10_25_06.doc and www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html. You can decide where the truth lies and whether Lyme disease will be at the forefront of your mind when a patient with puzzling symptoms knocks on your office door.

Both Caskey and Mervin related that they endured about 10 years of illness, disability, and misdiagnoses before they received appropriate care. Caskey reported that long-term (4½ months) intravenous antibiotic therapy brought her "back to the land of the living." As for Lull, she reported that she was able to "rejoin the work force within 2 years" after receiving long-term antibiotic therapy.

IN THIS ISSUE

We dedicated this issue to spinal cord injury (SCI). Our cover story discusses the difficult subject of managing pain--a multifactorial problem--in patients with SCI. It is complemented by a comprehensive review on interventions for the many sequelae of SCI and how these interventions contribute to rehabilitation. *

REFERENCES
1. Letter from Raphael Stricker, MD, president, International Lyme and Associated Diseases Society, to Sherwood Gorbach, MD, editor, Clinical Infectious Diseases. Available at: www.ilads.org/files/press_release_10_25_06.doc. Accessed November 10, 2006.
2. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Curr Infec Dis. 2006:43:1089-1134.

 
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