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Michelle D's Story

I went to the doctor on April 12, 1999, with a sore throat, fever, swollen glands, and a rash that developed on my torso and arms. I was exhausted and the Dr. suspected mono but made the comment that it looked like I had Rocky Mtn. Spotted Fever. She gave me two weeks of antibiotics and took my blood to check me for mono. The test results came in one week later, and they were negative.

I was feeling much better and did not think anything more of my illness. The following week I became exhausted again and I felt very weak. I was having difficulty at work with concentration, and I was very dizzy. My legs were feeling very weak, as if I had been in a marathon the day before. I went back to the doctor and told her how I was feeling.

She told me that she thought that I might have a weird virus that women my age (31) seemed to be getting; that I should feel better within a few weeks. The following week, I went to the ER because I felt as though my legs would not hold me up, and I was literally sleeping through the weekend and after work; and I felt drugged constantly. I was dizzy and I was having slurred speech in addition to anxiety attacks.

The ER told me they could not find anything wrong and asked me if I was depressed, since these were all symptons of depression. I left the ER feeling foolish and knowing that I was in no way depressed, just ill with something. I went back to my regular doctor and literally cried as I asked him (a different doctor in the practice) to help me.

He asked me a lot of questions and mentioned that all of my symptons clearly indicated depression, but he decided to test me for some other things. He tested me for Lyme disease, Epstein Barr and Cytomeglia virus. The CMV test came back positive. I finally had an answer to the way I was feeling. One month went by and still I was not feeling better. I went to a new doctor at the request of my family.

The new doctor told me that my blood results never indicated that I had CMV and he wanted to retest me. The blood results came back negative. At this point, I started developing pain in my joints, my jaw, my lower back, my feet and neck. I had a headache that would not quit and I was gaining weight. I still could not speak right, and I was having anxiety at night, I could not focus, I could hardly work, I was paranoid that it was in my head. I was scared that my life would never be the same.

I could hardly ride my bike, hike or have enough energy to even talk with my friends. I felt drugged constantly. I started researching Lyme disease and knew that that was what I had. I told this doctor that I thought I had Lyme and he told me that since my joints did not appear to be swollen, he could almost guarantee I did not have Lyme (but that I could have fibromialgia).

He ran tests for Epstein Barr, Lyme and Parvo virus, and all came back, positive now; all except the LYME. In the meantime, I made an appointment with a Lyme specialist. After reading all of your stories, I was sure I must have Lyme disease. The specialist tested me with a western blot and of course it came back positive. He found the rash in my hair line, which in retrospect, I can now remember scratching around Easter time, and making a mental note to have my mother look at it.

It was so hectic at Easter, that I simply forgot to ask her to look at the back of my head that itched. I am now being treated with antibiotics and I do crash from fatigue, but not as frequently. I still feel out of it and I still wake up with sore feet and muscle cramps, but I am on the road to recovery.

If it weren't for all of your stories, I would be out of luck. I hope I start to feel more like myself again. It has only been a month since the test came back positive, but I still am very angry and disgusted with the medical profession. I do not understand why the last doctor did not take me seriously when I told him I thought I had Lyme disease.

I believe he thought I was simply a neurotic female. I think it is so sad that for 4-5 months I felt like I was losing my life when all I needed was a western blot. I am wondering why my Drs. never suggested that test. When I sent all of those lousy Drs. my test results, the one would not even talk with me and the other only left a message that I needed antibiotics.

Not one Dr. said, "gee, I am glad you finally know what you have," or "hope you feel better." It is a very sad time when your doctors cannot even say, "Hope you feel better soon." The bottom line is that you know yourself better than anyone else does. Do not let anyone tell you that you are depressed or that your symptons are in your head. I am sure the Drs. thought I was a pain, but I am hoping that through their mistakes with me that they may listen to other individuals more seriously, and not take any chances like they did with me.

I wish you all the very best, Michelle

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