Jim's Story
Almost one and a half years ago today I began to experience severe dizziness complicated by nausea and vomiting. This was the beginning of my search for a diagnosis. It all began by making several trips to the local doctor for what I believed to be a sinus infection. A short course of antibiotics actually made the problem much worse. I became so dizzy I could not safely drive or walk, vomited frequently, and experienced severe headaches along with a terribly painful stiff neck.
I saw three different doctors over a half a dozen appointments, and ended up going to the emergency room for mysterious lightening bolt-like pains down my arms, legs, and face, with localized numbness in my jaw. When I added muscle twitches and tremors, and excruciating pain in both my right ankle and elbow, I became convinced that I in fact had Lyme. I had substantial exposure to ticks since I had worked in the woods and recreated there often.
A local neurologist obliged me by drawing a Lyme "ELISA" test, which later came back negative. While missing most of the next 2 1/2 months of work with tremendous fatigue and a constant blinding headache, I was able to get a referral to a prestigious teaching hospital in north central Alabama. After fifteen minutes of questioning the doctor said "I've seen this before up north, I think we are dealing with Lyme disease." He was leaning toward treating first and asking questions later.
Hallelujah, I thought, someone finally recognizes what I had suspected all along. I was admitted and subjected to a lumbar puncture for Lyme testing. I was elated, believing that we were now on the right track. Somewhere between the office and the hospital bed that decision was reversed. I was rudely spoken to like a child by the attending physician, dismissed without treatment, and sent home to wait for the test results. The results came back one week later; the ELISA was negative again. I was floored. How could that be?
I waited another month before I could see the doctor a second time, and he explained that since the test was negative I
may have an autoimmune disease along the lines of MS or Lupus. He suggested a course of powerful steroids to shut down my immune system. This might allow it to "restart" and begin functioning in a normal manner again. Desperate for relief and not knowing any better, I agreed. He explained that this was a very dangerous procedure that could expose me to a number of common infections that a person with a normally functioning immune system should fight off with no trouble.
My joint pain diminished and headaches improved. During the treatment I began to read more about Lyme. To my surprise I found that leading specialists now believe that aggressive steroid therapy is one indicator of a prolonged and more serious fight with Lyme.
I had come in contact with the LD Support Group of Alabama, as well as several other groups, who recommended a specialist here in the state. I called and had an appointment within days of finishing the steroid treatments.
The doctor started me on antibiotics immediately in the office and administered a Western Blot which came back suspicious for Lyme one week later. Looking back, that was a true miracle since the steroids prevent your immune system from producing any antibodies that could trigger a positive test. In the months that I waited prior to starting antibiotics therapy my symptoms expanded to include spastic muscle movements, loud sounds that were not really there, blurred vision, profound fatigue, and mental confusion.
I had lost much of my ability to write, spell, and think clearly about anything complex. And I began to think about preparations for my family once I was gone.
Fortunately, I had found a doctor who understood the complexities of Lyme, and who knew that he must begin treatment immediately. After 4 months of oral antibiotics I was much improved, having returned to work almost six hours a day. I was tested several times (Western Blot IgM, positive for Lyme @ 39 kDa and 41 kDa and a Lyme Urine Antigen Test, highly positive for Lyme, 142 & 147) and had several more good months. I was cautiously taken off antibiotics after six months of treatment and guardedly hoped for a return to my life.
I relapsed shortly thereafter and began to experience short-term memory loss and renewed headaches in addition to the other symptoms I still had.
I was on intravenous antibiotics for seven weeks and am now preparing for a longer battle than I first believed. I now know that early detection and treatment was my best chance at being rid of this demon that lives inside of me. I did everything that I could to convince my doctors that Lyme was likely responsible for my condition. My real problem was that the doctors I first saw did not know that Lyme is in Alabama. One doctor even told me it "did not exist in the south and if I had it he'd put my story in the paper". Hmmm…
My story is not very different from the thousands of others out there who have had an awful time finding a diagnosis and treatment. Thankfully, I am doing well at the present time. I've been pulsing Suprax and Flagyl since early September '99, and am working full time and have full cognitive abilities again. I'm enjoying the good days I have, knowing that there could be a relapse around the corner.
Thanks, Jim
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