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My wife had a hell of a time with it for a couple of years. You are right, negative on the test don't mean squat, and most Dr's don't know enough about it, or are so misinformed, they do not treat it correctly. A lot of so called medical profesional's will misdiagnos, or even accuse the patient of having psych troubles..
Try and find someone who is a specialist.. Dr. Samuel Donta at Boston University Hospital is one of the leading ones, but I hear it is tough to get in to see him now..
Best wishes to find relief for whatever is ailing you.
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