My Lyme Disease Experience in the State of Oregon
By Rita Stanley

I have had Lyme disease for many years, and have been bitten by ticks on both East and West coasts. My latest exposure was in June of 1991, in Washington County, Oregon. Although I saw the tick and the rash, because it was believed that Lyme didn't exist in Oregon, my diagnosis was delayed. The cumulative effect of multiple exposures to the Lyme bacterium made my disease much more difficult to manage. In addition, I recently found out that I had another tick-borne disease, Babesiosis, a malarial-like infection. I am the first reported Babesiosis case in Oregon.

The symptoms that I had before this latest exposure involved many areas of my body, but I was able to deal with these problems somehow. Following the last bite, I went downhill rapidly - especially in neurological areas. By December of that year, my goal was to simply wash the kitchen floor. I had full body pain, frightening central and peripheral neurological problems, cardiac symptoms, profound fatigue, and was in despair. The list of symptoms was so long and contained so many bizarre things, such as jerking, spasms, hallucinations, shooting pains, flushing, trembling, dimming of vision in one eye, drooling, head "pressure", etc., that I could not accept that I actually had them. At my point of deepest despair, I almost accepted the "hysterical woman" suggestion of a few doctors, just so someone could start trying to help me. One doctor gave me my money back to get rid of me! My husband, who never doubted my illness, insisted I go get a psychological evaluation to rule out psychiatric possibilities. And, that approach did seem to work.

My husband found an article on Lyme, and suggested that as a possibility because of the tick bite in June, but it was I who doubted it and wanted to actually rule Lyme out. However, after talking to a vet at the State Health Department, I was convinced to see a doctor who knew about the disease. I was in luck in those days. The doctor who began treating me also had the disease and understood it very well; he was able to work with me in a compassionate and open-minded way. Following one year of antibiotic treatment, I could wash my floor and do a bit more of my housework. After two years, I was functioning better, but still in much neuralogic and arthritic pain. After over 6 years of antibiotic therapy, I am functioning well, but do appear to have persisting disease, that, at this point, causes relapses at some point following antibiotic withdrawal.

My doctor, who treated me initially, had his practice limited in 1993 because of  "overdiagnosis and overtreatment". Since then, it has been a struggle for me and for others in this area of the country to get treatment, other than that of an extremely conservative nature. It is from this perspective, going from excellent care to its total loss and the ramifications, that has lead me to believe that the Lyme Community must say loud and clearly, and over and over again, what abuses exist.

Because of my health, I have never returned to baying work. However, I take care of my family and am doing volunteer work in the Lyme community. I never set out to do Lyme work; it defaulted to me somehow when Lyme patients found it almost impossible to get adequate care in the northwest. I had started out to simply "spread the word" by increasing access to resources; but found that the affects of academics, politics, and questionable medical ethics were what was driving advancement in diagnosis and treatment.

The work I used to do was in the academic arena, teaching and tutoring, and sales. So you can understand that this disease has taken much from me professionally. But, being in the middle of a firestorm on inadequate patient care and doctor harassment has added a lot to my understanding of the reasons why there is so much difficulty in recognizing and properly taking care of patients with Lyme disease.

Presently, I am a Lyme support group leader covering the NW states, and am on the boards and committees of several Lyme organizations. Our main resource center is at Good Samaritan Hospital in Portland, Oregon, where patients and doctors can call and receive information about Lyme and other tick-borne disease; books and tapes can be borrowed free of charge. I have also been involved in several demonstrations undertaken by the Lyme community in attempt to get our stories out, and to relate our difficulties in receiving medical help.

For more information on Lyme disease see: Lots Of Links On Lyme Disease

Last updated on 29 December 2000 by
Art Doherty
Lompoc, California
doherty@utech.net

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