Wow. Sorry for my delayed responses.
Zoda- I have heard of recurring EBV. I don't have any good information for you besides what I've already mentioned, but hopefully someone who can help will see your post. I wish you the best. Good luck!
lucysgd- Wow. It seems like you have a lot more going on than I do. I'm sorry to hear you've been dealing with this for so long. I know how disheartening and tiresome it becomes.
I don't know much about any of the connective tissue diseases, so I can't provide any info there. Fibro and CFS have been loosely thrown around as diagnoses for the past three years also, and fibro is what Mayo ultimately diagnosed me with. They definitively ruled out Lupus and RA (at least for now), and now I am currently in the process of ruling out MS and other neurological issues(in my hometown).
As for the symptoms you mentioned, not too many of them ring a bell with me. I actually had little or no fever at onset, and even at my sickest since then have rarely gotten fevers. I definitely had the extreme fatigue, but more of a "generalized achiness" rather than the joint pain. I don't know about the liver enzymes or headaches. It seems like maybe I did have the headache/eye issue though. I did not have a rash, but I definitely had weight loss and a loss of appetite.
Although Mayo wasn't as comprehensive as I expected, it was certainly the most comprehensive of all my labwork, doctor/specialist visits, etc. It is something that I would completely recommend and I cannot emphasize this enough, epecially for someone in a situation as enigmatic as yours. Please, please consider it. I believe there is a real benefit in giving Mayo a try. I don't know what kind of insurance you have, but mine is covering almost all of the cost, which makes it all the more worthwhile.
Thank you for your post. Please keep me updated. :)
Juanita Z- Its good to know more about others who are dealing with the CMV/EBV combination. Thank you for your post. I hope your supplements will help. I, too, feel like I have almost zero immunity that isn't rebuilding. When I went to Mayo, though, the doctor suggested that it wasn't that I had no immunity, but rather a slightly overactive immune system. From what I gathered, the two produce similar symptoms. I doubt that helps you, though. Good luck with your supplements. Keep us posted! :)