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Re: Zandvoort?
Aug 6, 2007
Hi Zandvoort and Ticker,
Thanks for responding! All great insight, as usual. I just don't know what to think, but the fatigue and weakness are getting so bad and I'm at the point where I've lost the life I used to live and need to get it back. I think it's worth revisiting Lyme, because I know the ELISA test is unreliable and that's what most doctors do. They initially ruled out Lyme, thyroid, B12 defficiency, and a slew of other things. For a long, long time they said it had to be depression. Right now they are treating me as if I have cfs and fibromyalgia, but only one of my many docs thinks I really have those. The other docs just think it's important to start treating my symptoms because it's taking too long to find out what is wrong. So far the only treatment they've provided is Adderall and a book about fibro and how to cope.

Ticker, of that long list of symptoms, I have almost all of them:

Unexplained weight change--loss or gain: I gained a good 12 pounds, but of course now on the adderall I have lost a few.
Fatigue, tiredness, poor stamina: My fatigue is so bad I cannot describe it in words. Just typing on these boards, I will have to rest for the rest of the day.
Swollen glands: Not constant, and sometimes only on one side of my neck
Sore throat: occassionally, also with hoarseness.
Unexplained milk production: breast pain: I have a lump they have to check every 3 months, but also had noticed some "crusting" around the nipple that the gyn said was milk production. They tested prolactin and said it was fine.
Irritable bladder or bladder dysfunction: the possibility of interstitial cystitis has been batted around by my docs, and I have to urinate constantly, even if I don't drink anything.
Upset stomach: much more often than I used to.
Change in bowel function-constipation, diarrhea: again, docs have questioned if I should be tested for IBS.
Chest pain or rib soreness: Yes, this came up when the doc suggested MS. I get an awful tightness around my chest and a chest pain, something I've been told was called costochondoitis
Any history of a heart murmur or valve prolapse? NO
Joint pain or swelling: joint pain, hence the fibro diagnosis
Stiffness of the joints, neck, or back: Yes, never had it before and it's unrelieved even with my tempurpedic mattress.
Muscle pain or cramps: cramps in upper legs all the time, but bigger problem is severe muscle weakness.
Headache: sometimes ice pick headaches, those short quick jabs of pain
Neck creeks and cracks, neck stiffness, neck pain: Yes, and never had this berfore
Tingling, numbness, burning or stabbing sensations, shooting pains: The bottoms of my feet burn something awful and I have all kinds of unexplained numbness, pins and needles, etc, and this terrible feeling that I can only describe as if bugs are crawling under my skin.
Eyes/Vision: double, blurry, increased floaters, light sensitivity: more sensitive to sunlight
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity: occassional ringing or hearing somethign like "white noise"
lncreased motion sickness, vertigo, poor balance: serious dizziness, like I'm on an elevator that's going down very fast. I can't even walk up and down stairs anymore.
Lightheadedness, wooziness: Yes,almost like hypoglycemia, even if I've eaten recently.
Tremor: very slight on my right side.
Confusion, difficulty in thinking: Severe
Difficulty with concentration, reading: Severe
Forgetfulness, poor short term memory: Severe
Difficulty with speech or writing: Yes, and not only that but my handwriting now looks like chicken scratch.
Mood swings, irritability, depression: slight depression, but who wouldn't be?
Disturbed sleep-too much, too little, early awakening: Yes.

Adderall helps very slightly with the fatigue, but the weakness is still present so it doesn't feel as though it's helping very much. But I'm concerned that I'm being treated with the wrong meds for the wrong illness. I definitely think Lyme deserves a second look.

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