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KaiserPapers Lyme Search
In Copyright Since September 11, 2000 This web site is in no manner affiliated with any Kaiser entity and the for profit Permanente
Permission is granted to mirror this web site. Please acknowledge where the material was obtained.
ABOUT |CONTACT FOR KAISER LYME DISEASE INFORMATION | MCRC
Geographic Distribution of Ticks in the United States - CDC Maps 2012
Oregon Health Care Town Hall
Re: Lyme disease (Lyme borreliosis) – lack of access to care
To Whom It May Concern,
I am a Washington resident but receive most of my health care in Oregon. For many years I was a Kaiser member but was forced to change health plans when the infectious diseases clinicians at Kaiser flatly refused me a Lyme disease diagnosis. A very brief history follows.
1) In 2000, I saw an infectious disease clinician at Kaiser Sunnyside. I had prepared a summary of my medical record listing symptoms linked with Lyme disease including an expanding circular rash which the NIH considers the hallmark symptom of the disease. My symptoms included serious cardiac and neurologic complications consistent with disease. This clinician dismissed the symptoms and went so far as to lie on my medical record saying that I believed there was a Lyme “conspiracy.” I filed a complaint against this clinician which was dismissed by Kaiser. The copy of the complaint in my medical record is so poor, it is illegible.
2) A neurologist at Kaiser tried to help me. He ordered a Western Blot test done through Kaiser’s East Coast laboratory and, since I distrusted Kaiser’s lab, a Western Blot test done (at my expense) by a reference laboratory specializing in tick borne diseases was also ordered. The Western Blot tests to be done through Kaiser’s lab were denied. Instead the cheaper ELISA test was done. This test is at best only about 50% accurate for Lyme disease, modeled around a single East Coast strain and is not specific to Lyme disease. There are 12 known West Coast strains of the Lyme bacterium and the odds of getting a positive ELISA result from a West Coast infection are poor. My ELISA was, of course, negative and Kaiser used this to support their denial. My Western Blot had the 5 bands required by the CDC for their restrictive surveillance criteria. The infectious disease clinician contacted by the neurologist denied that I had Lyme disease, citing the ELISA results, and did no analysis other than to consult with the original clinician who had denied a diagnosis.
3) Once I was able to change health plans, I went to a well-known and highly regarded Lyme disease specialist in San Francisco. I was given a battery of tests for Lyme disease and other tick borne diseases. Once again, I was CDC positive for Lyme disease by both Western Blot IgM and IgG. I added these results to my Kaiser medical record. Relatively few with proven Lyme disease can meet the CDC surveillance criteria, perhaps in the order of 10% based on the results of large scale clinical trials. In a response to a request, the chief of infectious disease at the time wrote me a letter saying that my serious cardiac and neurologic symptoms were not due to Lyme disease and that I did not have Lyme disease. He also said he could not locate my Western Blot tests. I responded to his letter and got a response back from the manager of the infectious disease department saying that my time to file complaints had expired.
During these past years, I have had to make the 12 hour drive to San Francisco to get appropriate treatment. It has taken almost 4 years of antibiotic treatment to become symptom free. I have not taken antibiotics for Lyme disease for almost one year.In December, I had major open heart surgery done at Stanford. The problems were likely due to congenital factors as well as damage from Lyme disease, although it is impossible to say how much each contributed. It is conceivable that had I been able to receive the aggressive IV antibiotic treatment initially recommended by my Lyme disease doctor, I could have avoided this surgery. It was impossible for me to obtain the local support required for IV antibiotics.
It is remarkable that the cardiologists handling my case at Stanford, including the Chief of Cardiothoracic Surgery and the Director of the Heart Failure Program and Cardiomyopathy Center, took the Lyme disease issues very seriously and it was noted on my medical reports. It is equally remarkable that my cardiologists at OHSU and one formerly with OHSU dismissed Lyme disease as a contributing cause of my cardiac complications. One told me that Lyme disease only existed in the Northeast. The other even went so far as to say I did not have Lyme disease though he knew absolutely nothing about it!
Kaiser is a major problem. They do not want Lyme disease diagnosed in their backyard. Since my experiences with Kaiser, I have become an advocate for Kaiser members who are denied care. This is a systemic problem at Kaiser. One employee told me that because appropriate treatment for Lyme disease can be more expensive than that of an AIDS patient, Kaiser’s solution is not to diagnose. They do this in a number of ways. A description would be beyond the purpose of this letter. A report was requested by and provided to a Congressional investigative committee regarding the manipulation of medical testing by Kaiser. Lyme disease was addressed in this report.
In the early 1990’s, Kaiser reportedly complained to the Oregon Board of Medical Examiners about a physician who was “overdiagnosing and overtreating” Lyme disease. Some former patients told me he was a very caring and compassionate physician who really helped them. This was probably the first case of Lyme disease physician harassment in the United States. I am also informed that Kaiser paid for a “Lyme expert” brought in from the East Coast to testify at the Board hearings. This “expert” is known to accept payment to testify on behalf of insurers. The Board gave the physician the choice of giving up his Lyme patients or giving up his license. He could not compete with Kaiser’s legal and financial resources and chose the former. This case has been a major factor in instilling fear among physicians in Oregon should they diagnose and treat Lyme disease patients.
I cannot understand the logic of a medical board that threatens a physician for helping people with Lyme disease on the basis of a Kaiser instigated complaint yet somehow managed to overlook the case of Jayant Patel, a former Kaiser surgeon who is charged with murdering 13 people in Australia and suspected to have killed a number of people while at Kaiser in Oregon. It was only well after the fact that the Oregon Board of Medical Examiners suspended his license to practice in Oregon. Kaiser’s close association with OHSU (that sets regional health care standards) and probable influence on the Oregon Board of Medical Examiners is deeply disturbing.
Very truly yours,
Miguel A. Perez-Lizano