Hi there- certainly does sound like a long road. Have you (or any of your docs) considered Lyme's disease or the other tick born illnesses? Difficult to assess if the doc isn't Lyme-literate. If you have any interest, I've heard good things about Dr. Bergeron in Roswell, GA. Sorry to throw more differentials at you, but Lyme, Bartonella, Babesia and Ehrlichiosis can often mimic other illness especially those with multisystem symptom constellations. Just a thought.

Best of luck