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My story... need your advice

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Old 11-21-2007, 05:32 PM   #1
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darion4 HB User
My story... need your advice

I've been fighting a barrage of strange symptoms - the same ones many of you describe - for almost 11 years now. They started just after returning from an extended stay in Jamaica, and a number of weeks (I can't say exactly how long) after being bitten by something that gave me a bright red rash that covered much of the top of my foot. My symptoms started with a horrible flu that was accompanied by the worst back-ache (at that time the ONLY back-ache) I had ever had. Ever since, I've had periods of good health, followed by periods of flare-up. I've been in an especially bad flare now for 2 years. During this time I've had a new strange symptom going on... every time I turn my eyes to the left I almost pass out. I've also been dealing with frequent blurry vision and burning in my chest.

I've seen 2 neurologists (MRI's clear so MS was ruled out), a cardiologist, and endocrinologist and 2 rheumatologists. I was diagnosed last year with Fibromyalgia, but part of me feels like I need to absolutely rule out Lyme Disease as a possibility. I'm only 36 and feel like if my health declines any more I'll be completely housebound. I've had Lyme testing once and it came back negative. But from my research I understand that false negatives are common when trying to diagnose this. Is that what you've all heard too?

Also, are any of you from Canada? If so, does anyone know a good Lyme-savvy doctor in the west?



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Old 11-21-2007, 09:56 PM   #2
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darion4 HB User
Re: My story... need your advice

Thanks for your replies!

Ktp, I hope you continue to improve with your treatment.

Ticker, thanks for that info. I have 27 of those symptoms on a fairly regular basis. Yet blood tests always show me to be in fantastic health, which is why this has been such a puzzle to my doctors. It's been hugely discouraging over the years. I've come away from many specialists with the feeling that they dismissed me as a hypochondriac. Eventually, after each flare-up I've returned more or less to normal, (though always with far less stamina than my friends), but within months all the symptoms would return. As I mentioned, I've been in a flare-up for 2 years now, and can't remember when I didn't feel dizzy and lightheaded. I do get out and around and do things, but as an example, if I need groceries, that is the ONLY thing I will schedule for that day since it wears me out so badly. If I do too much (an amount of activity which for most people would only be half a day's work) I feel chilled and feverish, sometimes slightly sweaty, and develop a sore throat for the rest of the day. This in spite of the fact that I eat well, maintain a very healthy weight, don't smoke or drink....etc.

Also, when I walk, especially outdoors, I have the sensation that I'm walking on a moving train. Have you heard of others describing their dizziness that way?

The rash on my foot was so long ago (near the end of 1995) that I can't be 100% sure of what it looked like. What my husband and I ARE sure of, though, is that it was bright red, covered at least half of the top of my foot, and had a lighter center. We clearly remember saying that it seemed like an insect bite because it looked like it radiated out from a centre. I didn't see what it was that bit me, but it was PAINFUL and required me to sit with ice on it for several hours afterward. I saw a doctor there in Jamaica and she said she'd never seen anything like it and couldn't tell me what it was. She gave me a round of antibiotics to take and that was it. In my research it looks as though there isn't a high incidence of lyme in Jamaica. So I just don't know. ARE tick bites painful? I haven't got that impression from much of what I've read...

Thanks so much for all the information. I'll try contacting that doctor in Hope to see if he can recommend someone closer. If not, I don't mind travelling down there. Thanks again so much!


Last edited by darion4; 11-21-2007 at 10:00 PM.

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