I had a "mystery virus" in '97. Tested positive for both EBV and CMV. My doctor at the time initially refused to even test for "mono" because I'd had a bad case in college (nearly 30 years prior) and said I would test positive regardless. When she couldn't figure out my fevers, elev. liver enzymes, fatigue, rash, and joint pain, she finally consulted with an infectious disease doc who directed her to test for EBV & CMV. This was a good month after the onset which was particularly harsh. She told me I tested "weakly" positive for both. In the years since,the fibro and CFS followed the unexplained virus, and now I'm looking at AI problems, spending most of my time on the lupus board.
In the interim, I saw a homeopath, who was convinced that I had chronic EBV, and treated me as such. The titer for early antigen was very high when I started homeopathy, and I was feeling pretty bad. Over a few months, I felt only slightly better and, indeed the titer had come down very very slightly. The homeopath moved, and I more or less gave up on that approach. about a year later, after feeling much better over the course of a summer, I asked my pcp to run a titer for the EBV - just to see what it might be reading when I had been feeling well. He didn't wish to do so, saying it really wouldn't tell us anything, but I persisted and he relented and strangely enough the result was that the titer was quite a bit higher than it had been when I first saw the homeopath!
I did some research and couldn't find anything that really supported the EBV titers as being diagnostic or even valuable for monitoring. At least for the chronic problem. If anyone else has information they'd like to share on this, I'd really appreciate it. I've never been the same since that "mystery virus" and have had two similar flares (tho much milder) in 2005 and again in July of this year. I don't feel very well most of the time, but these bouts with sudden onset of fever, headache, eye pain, overal joint pain, and pronounced fatigue and malaise, are so specifically similar to the big one in '97 that I have to believe they are one and the same - just don't know for sure what "that" was.
It seems most doctors just don't understand the Chronic EBV thing - and since there seems to be no treatment.....they are less interested in working specifically on that. Sorry this is so long. Kota and John, I will check into the glutathione/atp and Human Parvo Virus.
diagnoses: mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds: occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair.
~~ Chinese saying as quoted by Helen Nearing