Boy I hesitate to post, as it could take pages to cover this enough so you'd understand it all. Anyway . . . I'll make an attempt as I don't want anyone to go through being sick for life when they didn't need to be. If only one person is helped it will be worth it.
I went 5 yrs misdiagnosed with CFS (which is a dx of exclusion and the cause is unknown). By the time I found out what I really had - lyme disease - it was stage 3. So now it's an auto-immune disease. I've been battling this since 1999 and I don't know if/when it'll end.
It turns out that CFS, FM, EBV, MS and whole host of other ailments can be Lyme Disease which is usually accompanied by other tick born illnesses. One doc in TX found that 95% of CFS patients in a 500 patient clinic in Houston had lyme disease.
There are a host of reasons it goes misdiagnosed - most well-meaning docs don't think it's in their state (as of last yr it's in all 48 contiguous states), the standard lab (ELISA) missed over 60% of the cases, patients don't realize that they have to become their own advocate and educate themselves to get adequate testing (western blot that reports bands) and treatment, there are politics involved (yes, I sound crazy, but currently in CT they are sorting out the IDSA lyme treatment guidelines due to unscrupulous infectious disease docs), the symptoms differ by region, a persons make-up and what co-infections they may have. . . the list goes on.
For information go to
www.ILADS dot com
Please don't miss the top 10 list. It addresses a lot of the misconceptions that are out there.
Blessings for your health,
Prairie Mary