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Advice and Information for Kaiser Lyme Disease Patients

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Geographic Distribution of Ticks in the United States - CDC Maps 2012


May 11, 2004
Richard E. Bryant, M.D.
Oregon Health & Science University
Infectious Disease Clinic, Mail Code: L 457
3181 SW Sam Jackson Park Road
Portland, OR 97201-3098

Re: Lyme Disease

Dear Dr. Bryant,

Not long ago I noted that the International Lyme and Associated Diseases Society (ILADS) was referenced in an OHSU Lyme disease web page. I also note that this page and reference no longer exist. The appearance, although apparently temporary, of the ILADS information on OHSU’s web page gave me the inspiration to write this. 

There are a number of people in the Pacific NW who need help with Lyme disease. This number may be rapidly increasing as more and more people learn they have been misdiagnosed with other conditions. For the last two years I have tried to help these people find doctors. Particularly for Kaiser members who are denied diagnosis and, therefore, denied care. Virtually everyone in Oregon and Washington has to travel out of state for medical assistance with late-stage or misdiagnosed Lyme disease. Help for Lyme disease in the Pacific Northwest is pathetic.

I understand that the Oregon Board of Medical Examiners has been known to harass physicians for “overdiagnosing and overtreating” Lyme disease. At least one or more of these complaints reportedly originated from Kaiser. I had to leave Kaiser after 27 years of membership when I was very ill and Kaiser refused to diagnose Lyme disease despite disease specific and definitive Western Blot tests for which I had to pay. An infectious disease clinician at Kaiser went so far as to lie to me and on my medical record. The (non) diagnosis of Lyme disease is a systemic problem at Kaiser. In my opinion, Kaiser’s motive is clearly economic. OHSU’s close relationship with Kaiser concerns me deeply.

I do not know to what degree you have flexibility in dealing with Lyme disease. If OHSU conforms to restrictive CDC surveillance criteria for diagnosis, Infectious Diseases Society of America (IDSA) guidelines are used as a sole standard of care and choices of medical laboratories and diagnostic tests are limited, then the care you can provide is compromised. The other major factor is the degree to which you would feel threatened by the OBME if you provide long-term antibiotic treatment or if you are convinced long-term treatment for Lyme disease is inappropriate. It would also be helpful to know if you have demonstrated expertise in diagnosing and treating late-stage Lyme disease as well as how you deal with other tick-borne diseases that many have in conjunction with Lyme disease.

It would be very beneficial to many to have a regional expert resource. I still travel to San Francisco for competent help for Lyme disease. Three years ago I seldom left my house and was too sick to travel anywhere. There are some in that position now.

Very Truly Yours,
 

Miguel A. Perez-Lizano


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