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Lyme Disease Message Board


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I've read a lot here and I just wish that I had stayed with what I believed.

I had a round red ring on the inside of my arm, near my armpit, back in 98/99. I showed it to my brother in law, a physician, when we were at a family party. He said it looked like Lyme but since there were no deer ticks in MI, it couldn't be. I found out later that this isn't true (we have deer ticks).

3-4 years later, I started getting all of the fibromyalgia/CFS symptoms (and all of them severe, such as full-body pain, fatigue, migraines, brain fog, etc.). After not getting help here, I went to Mayo for diagnosis and asked to be tested for Lyme (remembering the scar). It was negative, but they only ran one of the first tests, not the Western blot or something more in-depth. So they diagnosed me with fibromyalgia/CFS and every new symptom I have goes into that.

A year later, I got Raynaud's. Other tests showed an excess of arthritis and deterioration in my knees, back and neck. My vision went from almost perfect to very bad in three years. I had a seizure a couple of years ago. I've lost almost 100 lbs for no reason (I was overweight, now I'm not). And now I have a couple of different types of neuropathy (small fiber, large fiber) and muscle atrophy. I am scared to death.

I am currently on disability which may not last long because fibromyalgia isn't "real" and the neuropathy is not debilitating enough "yet" even though it's moving fast (all I had last fall was cold feet). My body twitches, my hands shake, typing this is taking a long time. I'm numb to my knees, everything burns and I have sharp, jabbing pains. Talking is getting harder and the muscles used to cough, laugh, etc. are weaker.

Last fall, when the neuropathy was first diagnosed, I asked the neurologist to run a Western blot. He said it wasn't necessary - it should only be run to check the first test. So he ran the same kind of test as Mayo and it showed that I didn't have Lyme. Again.

I also have depression, anxiety and have lost 30 points of verbal skills. I feel like someone has put a block in my brain and I can't access the information on the other side.

Again, I'm back to the Lyme question. Does it sound like I have it? Bite, four years later fibro, year later Raynaud's, seizure, vision problems, arthritis, 2+years later neuropathy, 3 years later muscle atrophy.

Where to start? I need an accurate test, but who will run it? I am not rich, but is there anyone good in Michigan (or NC? I have friends in Raleigh and I can stay there) who can run the right test(s) and treat me? I'm tempted to travel to one of the good docs that have been mentioned here, but again, I am not rich. I might have to though, because this is my life we are talking about and I've already lost so much. I lost several years with my new family and a wonderful job where I was at the top of my game.

Also, with treatment, will all of this go away? I'm very confused by the information here. It sounds like there are different treatments that are necessary, that insurance doesn't cover in most cases and if you don't get the right doc, you will not be helped at all.

I hope this wasn't too much writing at once. I just have so many questions and need help fast, before the muscle atrophy gets worse and I can't get around by myself anymore.





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