04-15-2010, 09:55 PM
Sounds very familiar, that all happened to me too. You doc is absolutely incorrect in saying that Lyme is ruled out, because the tests are not definitive and a diagnosis should be made on a clinical basis.
At http://www.patient.co.uk/doctor/Lyme-Disease.htm it says 'There is currently no definitive test. Lyme disease is a clinical diagnosis and tests should be used to support clinical judgement'
I'm not sure why neurologists are so adamant about the prevalence of Lyme.
If you were a healthy active adult, I'm assuming you walk, cycle, etc. outdoors? As someone else has said , if you can remember being bitten at all, did you have a bulls-eye rash? If you did then that's the clearest indication of Lyme. However, a lot (most) people don't remember a bite.
Have you had a course of antibiotics for anything? I wonder if your GP would try you on a course of high-dose doxycycline to see if you have a reaction. Unfortunately it does all get a bit complicated because if you have a 'bad' reaction to them then that may also be an indication of Lyme.
Can I also suggest you contact http://www.bada-uk.org - they are used to helping people in your situation. It's staffed by volunteers with little funding but they are excellent at weeding out the myths from the facts and will help you on the right road.
Above all, don't accept a diagnosis of fibromyalgia (imo) as there is no treatment for it, just management, and that won't help if you do indeed have Lyme. Don't let the docs fob you off, it is highly likely you have had your eureka moment but persuading them to run with it is hard!
My partner had a CFS/ME diagnosis for 6 years, was 'treated' with CBT, reverse therapy, anti-depressants, etc. Turned out it was Lyme, he was treated with a couple of years of pulsed antibiotics and is now fit and well, something we thought would never happen. Take care and don't let anyone deter you!
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