Hi, first off let me elcome you to Healing Well!
I don't have CFS or Epstein Barr, but I have Fibromyalgia and this has caused me a world of trouble with extreme fatigue. None of the anti-depressants they gave me did much for the fatigue. I was falling asleep at my desk at work, in the middle of conversations with people, pretty much anytime anywhere. Then my doctor prescribed Provigil and it has made a big diffrence. I feel much less fatigued and I'm able to stay awake most days, I don't feel like I'm dragging myself around as much anymore either. I haven't had any side effects with it, it doesn't make me jumpy like the aderall they gave me before did. I am wondering if anyone else here has tried it and what it has done to help their CFS or EB symptoms.
Again, welcome to Healing Well, I hope you get some answers soon, good luck.
I'm sorry you're not feeling well. I just wanted to say that EBV causes mono. I tested positive for Chronic Epstein Barr a couple of months ago. Then I had a more sensitive test done to check for the active virus, not just antibodies. Although I've learned lately that nothing is ever 100% reliable, mine shows it was in the past and I'm hoping that really is the case. I had mono when I was 12, so it would make sense that I could have antibodies but not an active infection. If your doctor hasn't made sure it's an active mono/EBV infection, maybe that's worth a try. You can do the same kind of test to look for an active case of cytomegala virus (CMV). This is the herpes family of virus that causes mono, chicken pox and all that stuff.