Posted 9/19/2010 7:34 PM (GMT -7)
We all understand how you feel; lupus is a difficult illness to diagnose. It took years for the doctors to finally dx my 3rd daughter, Cheryl, with SCLE.
I was somewhat lucky in that my rheumy first gave me a tentative lupus dx last October, after I had only been seeing him for a few weeks, even though I did not have a positive ANA test. The clinical dx was due to my symptoms (sun sensitivity, malar rash), a positive anti-DS-DNA test, and the fact that I have lots of lupus in my family and a genetic tendency to develop autoimmune diseases.
Then a couple of months later he reversed himself and told me I probably didn't have lupus because he kept testing me and I always had either a negative or borderline positive ANA test. He told my it was a "lupus-like autoimmune disorder".
I did point out that I was taking serious doses of prednisone and Imuran (both immunosuppressants), so it was not too surprising that my ANA was frequently negative.
I didn't have a REALLY positive ANA test until August of this year. As soon as he saw that I had an ANA titer of 1:160, he said, "OK, you have lupus". Well, not that I wanted to have lupus, but it's sort of comforting to be out of diagnostic limbo.
In the meantime I've also been dx with Lyme disease and 3 co-infections (Babesiosis, HME, Bartonella). I've learned that ANYONE with fibro plus AI diseases (especially lupus, RA, or MS) should consider visiting a Lyme disease specialist to find out if they have Lyme. Lyme can both mimic and trigger AI diseases and fibro....in fact, most of the people I know who have Lyme were first dx with fibro and/or lupus and/or MS (or any combo of these).
Have you ever been tested for Lyme? This is just a suggestion of course, since I am not a doctor so cannot give medical advice, but you might want to explore that possibility, particularly since you tested positive for EBV.....I too tested VERY positive for EBV and CMV. Lots of Lymies have very high viral loads, because Lyme suppresses the immune system (literally turns part of it off) so you become very susceptible to infection.
I don't know if any of this has been helpful, but I hope that you get your answers soon!
Wishing you peace and healing....
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Mepron, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec