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Lyme Disease Message Board

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Where to turn next?
Aug 28, 2004
Hi everyone.. I've posted on this board once or twice before, but it's been a while. I was diagnosed with Fibromyalgia 3.5 years ago, yet I've changed doctors a couple times since then and no one has given me a firm diagnosis since then.. it seems they don't even want to mention Fibro - my guess is that they don't believe in it at all.

In 2000, I was feeling rather unwell, and decided to visit my doctor.. while I was there, I happened to point out this "bug bite" I had on my upper thigh. Surrounding what I thought was a bug bite, was a round red rash type of thing.. about the size of a small dinner plate. At that point I had completely forgotten that it had been a tick bite (it was a week or so before and had no problems removing it.. I just forgot about it completely). My doc and I had never put two and two together (the rash and the illness), and she believed it to be an infected "bug bite" - same as I believed. She put me on a week's worth of antibiotics.. and we were done with it.

In early January 2001, I became sick.. muscle/joint pain, general feeling of exhaustion, headaches, etc. That's when I was diagnosed with Fibro by the first doctor.

Never once in the last 3 years had I even suspected Lyme until a few months ago when I was reading these boards and started doing research on it. I looked at pics of the "rash" and low and behold they look exactly what I had. So, I mentioned it to my doctor, who said that if it WAS Lyme, it would not show in my bloodwork since it had been so long.. she was sending me to a rheumatologist for the first time anyway and told me to mention it to him.. I won't even get into how HORRIBLE that appointment went, I'll just say in nice terms that he wasn't very helpful and it was quite humiliating..

Long story short, he did order a test for Lyme.. I truly don't recall what test this was, but it was through Quest diagnostics. When the test came back negative, he told me flat out that it was IMPOSSIBLE to have a negative lyme test and still have Lyme.. especially anything of the chronic nature. He gave me copies of the tests to take to my regular MD. I noticed that there were 2 bands (?) that were positive.. though I'm not sure what that means there. My regular doc hasn't said a word about it since.

Over the past 3.5 years, my symptoms are getting better in some areas, and worse in others. I'm starting to have ALOT of muscle twitches.. I've had them for the past few years, but now they're getting worse. I can't go 2 minutes without something twitching somewhere. The twitches all over my body.. my arms, legs, face, stomach - you name it, I've had a twitch there.. sometimes the same twitch will last for days. Some are also in some really odd places at times, such as inside my ears, and ummm, well inside the vagina (sorry if that's TMI there). I've never mentioned to my doc since it doesn't cause pain.. I just don't think about it!

I also have alot of other nerve problems.. shooting pains down the back of my legs, alot of lower back pain - it's a stabbing/electrical jolt type of pain. I also get these extreme sensitive areas on my face and head.. sensitive to the touch, and even just touching my hair can send a shockwave of pain through my scalp. Also, just yesterday, both of my arms went numb for no reason at all. Not completely numb to where I had zero sensation, but a pins and needles type of feeling - kind of like when your foot falls asleep and is starting to wake back up. It lasted for about 4 hours then went away on it's own.

I'm sorry this has gotten so long.. but I'm looking for advice on what to do, or what type of doctor to see next. I'm thinking the next step is a neurologist. But what do I do with these negative Lyme tests? I'm in NY, and I have to be sent somewhere that my insurance will cover.. otherwise, there's no way that I can afford it (sad to say, but I'm pretty darn poor).

I just want an accurate diagnoses. Some days the pain in my muscles and joints is just so unbelievably bad that it's hard to even move :(

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