Find a doctor who will order a "double-stranded anti-DNA autobodies" blood test which is the only truly definitive way to find out if you suffer from Systemic Lupus Erythematosis, or "SLE" or even "Lupus" for short. I too had extremely high titres to both Epstein Barr and ANA. Doctors couldn't diagnose me for six full years. Most doctors don't know about the above mentioned blood test or are hesitant to order it because it's very expensive. So I decided to find out for myself what I had because I knew that something had to be causing my horrific fatigue and aching joints. I went to Emory's Medical Library many times to try to diagnose myself until I found that I must have Lupus after all. My primary Doctor told me I couldn't have Lupus because "I didn't have the right personality for Lupus"! I found an excellent Rheumatologist who examined me and told me he believed I had Lupus and also it's sister disease, Sjögren's Syndrome, for which he also ordered an "SS-A and SS-B titres"for the Sjogren's Syndrome. I had both.
Lupus is a very difficult disease to diagnose because each patient has different symptoms, with profound fatigue as the only Universal symptom, I believe. Sensitivity to sunlight may be another common one but is not true for every person. After being in sunlight, the telltale butterfly, or "discoid" rash can appear on one's face. The rash actually resembles a butterfly and you can GOOGLE photos of it. I wish you good luck in finding an answer. If none of your doctors has done the Double-stranded anti-DNA antibodies test, then by all means, find one who will!!! I wish you the best and pls keep us informed. One last thought:. I went to a different Rhematologist first. He told me I was suffering from Epstein Barr and definitely NOT Lupus. After I found a GOOD Rhematologist, I was sure to send the previous Rhematologist the results of my "positive for SLE and Sjögren's Syndrome" blood test results. He later apologized to me.