I'm trying to find some help with my mystery! Background: in 2006, I had a result of EB VCA IGG AB of 4.95 (range of 0-0.90), negative for Mono. These were the only EBV related values tested among other random blood testing - I can't for the life of me remember the history (I believe I was having sinus issues) but do remember the doctor saying 'it just means you had an active EBV infection at some point in time'. Fast forward to early 2016 –I saw my primary with complaints of fatigue, forgetfulness, absent-minded, no focus and headaches (I had a bad sore throat three weeks previous). He referred me to a neurologist suspecting Adult ADHD. I did see the neurologist who after an exam and questionnaire told me I had Adult ADHD. I thought she was crazy so I didn’t go on meds and continued with life. Two years later (2018) I went back to my primary (and the neurologist) again with memory loss, headaches dizziness, fatigue and lack of focus. After an MRI of the head showed nothing, she again diagnosed me as ADHD. I finally figured I’d give the meds a try – they helped so I accepted it. Even with meds, I still dealt with headaches, never woke up feeling refreshed and tired easily.
CURRENT STATE: About 2 months ago I had my annual exam where they ran the typical blood / urine tests. About a week after, I started with a high frequency to urinate (but no pain), pressure/nausea in my abdomen, diarrhea and terrible headaches. Urine showed a bunch of red flags so dr re-did my urine. That test was much cleaner, no bacteria but symptoms persisted so dr treated me for a UTI. After a week of Levaquin (yikes), same symptoms persisted. So far I’ve seen a urologist and gynecologist; had a pelvic & Ab CT with and without dye, CT of the head, another week of a different antibiodics – all tests have been negative. I switched primary dr’s and the new one ordered about 7 pages of blood work. While waiting for results, my GI symptoms mostly went away but my fatigue has increased and now I have bad muscle/joint pain. The only thing that came back from bloodwork was EBV: EBV VCA AB (IGM) normal (<36.00), EBV VCA AB (IGG) positive 400.00 (range >21.99 is positive); EBNA (IGG) normal (<18.00). Doc says “I found out why you’re tired, there’s evidence of prior EBV exposure, your levels are significantly high so I believe you had a recent exposure. Doesn’t explain your other symptoms so see a GI next.” I did tell him about my past result in 2006 and he says, it’s a reactivation – you need rest and limit alcohol but see a GI. I’m barely able to complete work tasks, even with light activity I’m tired and achy and my pain seems to move to different parts of my body – from my lower back, my wrist, my neck/traps, my left outer thigh/hip to sometimes internal type pains (dull aches). I’m not sure where to go from here but the more I read, the more EBV seems to be a cause for all the other issues. But it’s really hard to tell what are high EBV values vs “past infection” levels. Any thoughts or advice? Or suggestions on which dr to see next? I'm wondering if my ADHD is really CFS or something related to EBV?? Thanks!
I forgot to mention, for the last week my face feels flush and I'm also have trouble swallowing (where when I eat I can't fully swallow my food without a drink). I have stopped the ADHD meds just to eliminate that causing symptoms.