I had mono when I was just about 18 years old, I am 64 now and have NEVER felt good since I had mono. In the past 20 years OR LONGER , I am constantly lethargic, my eyes feel like they are closing all the time, I don’t have energy to do anything, and when I attempt to, it just exacerbates my symptoms. I have major brain fog, tinnitus, constantly have postnasal drip, body aches, was told I have fibromyalgia, and have been to more doctors than I can even count. I have been diagnosed with Ménière’s disease (inner ear).

In doing my own research, I decided to do an EBV test on my own by ordering it from Ulta labs online and then going to the lab to get it done. I was shocked to see the number so high, but it was only one test. I have major health anxiety from feeling like I’m dying pretty much my entire life and nobody listening to me.

So I took the results to my primary doctor, and he blew it off immediately, saying that anybody who had mono at any stage, they would always have high numbers for the rest of their lives. For a short time that appeased me, but it still didn’t give me any answers to my debilitating fatigue and other symptoms.

A couple months later I decided to go back to my doctor with some printed information about chronic EBV. The words that came out of his mouth, shocked me! He said, “I don’t know what to tell you, they didn’t teach us a lot about that in medical school. I wouldn’t even know who to send you to. I asked him if he could run further testing and he said he could do that but he wouldn’t know how to interpret the results. Mind you I’m in Oregon and my doctor is with OHSU. I would’ve thought he could tell me he would consult with a colleague, or send me to somebody who might understand the results. My results are as follows:

AB to VCA IGM is normal
Ab VCA IGG >750
AB to Nuclear AG / EBNA >600
AB to early AG >150

I’m so thankful to have found this thread it’s very validating. All my doctor ever says to me is that there is a mind-body connection and you have major depressive disorder and you need to get out, socialize; walk and be in the sunshine and get exercise. If I didn’t feel like this all the time, I would LOVE to get out and walk and get exercise. And I agree, I AM depressed… anybody would be who feels unwell all the time. On a rare occasion, I have a good day, and I don’t want it to end, but they are very few and far between. I have never considered myself a depressed person in my life. It is only when I feel crappy that I am depressed.

I have weird things like tachycardia attacks for which I’m on a beta blocker. Panic attacks. I can go from constipation to diarrhea, sinuses are always stuffy, my eyes are always burning, but I don’t have allergies to anything, I have some tremors in my fingers and my jaw, now I feel like it’s internal especially when I wake up in the morning, my brain feels dysfunctional like I have phrases and songs on loops Stuck in my head for days and weeks at a time. I just don’t feel like a normal human being, ever.

Thank you for letting me vent, I just don’t know who to turn to. I don’t know if I am supposed to see an immunologist, infectious disease specialist or where to go next since my doctor has pretty much thrown his hands up in the air, and said if he doesn’t know what to tell me. I’m scared I’m going to die soon, because the anxiety of not knowing what’s going on in my body is it 10 times worse.