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Steven's Story

In 1986 I was visiting Colorado near East Park at the Mount Olive Ridge camp ground, in the Roosevelt National Forest. I remember the tick. I attempted to scrape it off and the head of the tick got stuck under the skin on my leg. I didn't do too much about it and a few days later I ended up in the Emergency Room. They said it was Rocky Mountain Spotted Fever and sent me on my way with some med's. I got back home and was still sick. From that point on I was sick off and on for years -- everything from sinus infections to kidney stones.

I seemed to be going from doctor to doctor, each one treating me for whatever I went in for, but not finding the underlying problem of why I was getting sick all the time, missing work and college classes. All the time I never thought that the tick bite would have anything to do with this. I ended up having a couple of surgeries, some which were later considered unnecessary (but I cannot blame them because they were treating me the best they knew how, then). It wasn't until I moved out of state to California for a new job, I was heading up the ladder in my Criminal Justice career. During this I was getting sicker and sicker as months-years went on. I would go from doctor to doctor because I wasnt happy with the results.

I knew in my own mind that it wasn't just a sinus infection. There had to be more to it, because I was having a lot of problems: sinus infections, muscle, joint, eyes, headaches, dizziness, tired all the time, memory problems - one word recall, etc etc etc etc etc etc..... It was 1995 now, and I'd finally found a doctor (California) who said he was going to test me for all types of things. He asked if I had ever been bitten by anything. I said yes, and showed him the scar on my leg from the tick bite. He asked if I had a rash with it. I said, "yes, you can check the ER report," which I sent to him later (I always made copies of medical records).

I went back for my blood results and while the doctor was reading over the results, I could see him puzzled, as he stopped for sometime on one page. He said my results were normal and that I should stay on my medications. As I left the office I stopped by the desk and got a copy of my records. I went home and saw sections that said high out of range. One said Lyme disease. I called the lab and asked what this was and what it meant. After finding that out, I made another appointment with the doctor. He said that it didn't mean anything but would retest me for my own sake.

I went back and that doctor had left the practice so I had to see another one. This doctor came into the room and said that I didn't have Lyme disease (never had it and never would have it, and said that I was to see a mental health specialist to learn to deal with my chronic sinus infections). I left stunned and jolted -- I'd never felt so bad in my life. I was a mental case; at least that's what I was told (there is a saying in the Lyme community - you know you have Lyme when you're told to see a psychologist).

I got those results after I left, and they also said high out of range for Lyme disease. I went to another doctor sometime after and was tested again -- and again, the same results. Then I went to another doctor who tested me again and again, and still more of the same thing. I began to study up on Lyme disease. I found a specialist but it was some distance from were I lived. I ended up making an appointment and saw him. After several visits and treatments I was told I had Lyme disease.

Due to the drive I was told about a doctor somewhat closer to me, who also specialized in Lyme. After several visits and treatments, I was diagnosed with chronic Lyme disease, chronic fatigue, peripheral neuropathy,and fibromyalgia -- among a list of other things the other doctors had diagnosed me with. After a long time of treatments I was still getting worse, and every time something new came up I would never go back to the same way I was before. I was now an unemployed, legally disabled, young adult, and losing my health.

I struggled everyday with one or more problems. I decided to see an expert in the field to see if I really had this thing, and what the future held for me. I went to Boston and saw an expert in the field. I ended up being diagnosed with chronic Lyme disease, among other things. Today, I see a local doctor who is treating me for my major problems, and consulting with the doctor in Boston for Lyme related issues.. If I went in for everything that bugged me, I would end up living at the doctor's office.

There has been a lot that has happened to me since 1986 'till today, 1-99. I am familiar with the west coast and how it deals with Lyme disease. I feel that I can lend a hand and offer some ideas. More importantly, I would like to help organize more Lyme support groups here on the west coast, and help to educate doctors, patients, someone who might think they have Lyme disease, and anyone interested in learning more about this illness. And you don't have to live directly on the west coast (western states). If you need help or wish to help out with this cause, please email me.


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