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Sylvia's Story

Here's my story ...

My journey with Lyme began in the spring of 1986 and would take me down a very long, bumpy road. I had a hysterectomy in mid-April, 1986 and recovery was progressing normally. Five weeks later, it turned very warm, for Minnesota anyway, and we decided to go camping for the long Memorial Day weekend. We visited a campground in Hayward, Wisconsin (I later found out that that portion of Wisconsin was one of the "hotspots" for the deer tick.). Oh how I would come to regret that trip!

A week or two later, I thought I was having a setback due to the surgery ... I felt feverish, fatigued and just hurt all over. My six-week medical leave from work was over and it was such a struggle to go back. A small rash had appeared on my right leg which didn't concern me; campers tend to get things like that! But after two or three weeks, it had grown and was starting to form a circle that was clear in the middle. I thought it was ringworm and tried almost every kind of O-T-C cream there was on the market, but nothing worked and my doctor wasn't concerned about it. He also said I probably didn't have a fever, that it was likely an imbalance of estrogen due to the surgery.

Two to three months later, the fatigue continued, the circular rash grew to about one and a half inches, and I started having twitching and spasms on one side of my face, along with periodic fast, very hard heart beats. I saw an internist; he did some blood work which was inconclusive and had me wear a Holter monitor for two days. Of course, my heart behaved during those two days and the test was negative. I still had the rash and showed it to him but he too was not concerned.

Within the next year, I developed some respiratory problems, memory loss, insomnia and blurred vision. The fatigue was unrelenting and I went back to the doctor. Again, he couldn't find a reason for my symptoms. During the summer of 1988, I read an article in Woman's Day on Lyme disease. It listed the symptoms and a huge light bulb went off! It described everything I had been experiencing for the past two years. I called my doctor and he had me come in for a blood test. The test showed positive for Lyme and I was put on 1,000 mgs. of penicillin daily for 30 days. It was such a relief to finally have a diagnosis!

I felt much better towards the end of the month but after discontinuing the medication, the symptoms started appearing again and I was put back on another 30-day regimen of penicillin. A few months later, I started having body-wide muscle pain and the fatigue, memory loss and insomnia returned. I also became easily confused and disoriented. Thinking it was a relapse, I went back to the doctor but he said it was probably just stress. Things just kept getting worse and I made several trips back to the doctor during the next three years. He kept saying it had to be stress and offered several suggestions on how to alleviate stress in my life.

I was starting to think he must be right. The last time I saw him, he said "After all, you are 50 years old - you have to expect to have some pain now and then." In May of 1992 I switched doctors and explained my history of Lyme, giving her my long list of ongoing problems. After several blood tests, an EKG and a "trigger point" exam, she diagnosed Fibromyalgia. I had never heard of this and didn't know if I should be scared or relieved.

She explained that FM is a chronic, painful condition that affects the muscles and their fibrous connective tissues, and that the symptoms of FM often mimic those of Lyme disease. She also said that many people with FM have also had Lyme which I found very interesting. I have since read this in a newsletter on Fibromyalgia. I sometimes wonder if, in fact, I still have Lyme and not Fibromyalgia. My doctor says no, especially since my pain is in the muscles and not in my joints. Maybe my story isn't over!


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