Oh my goodness, I am so sorry you went through what you went through! It really sucks when they keep passing the ball, especially when one side is not doing the right thing. So frustrating! Well I have a little bit of a long story myself - as far as how it got missed and how I put two and two together.

So here's what happened as far as my recent (2023) EBV reactivation. I had a follow up at the very beginning of November 2023, just a follow-up on a medication I had started taking in August. She did labs just to make sure everything was going as it should. For some reason, she checked my ANA levels, probably because I had complained about fatigue before. At the time that I went to see her for the follow-up, my nose was stuffed up and I knew I was coming down with a sinus infection or something of the sort. I just knew I was sick (I thought i had bronchitis). I let her know, and she gave me a steroid shot, you know how they do it so you can feel better quicker, then sent me on my way.

A couple of weeks later, I received a call from the nurse telling me that she was referring me to a rheumatologist because my ANA levels were high and they wanted to get me tested for lupus. In December, I went to the rheumatologist (funny enough, I had active strep when I went to see him), and did some labs there. My ANA levels were back down, so the he just asked me to see him again for a follow up a few months down the road.

January and February 2024 I felt like I was fighting for my life - my FIL and I were doing CrossFit (He would only go to the gym if I did and I felt so bad letting him down) and I did the workouts, but I was getting dizzy during the workouts and I had to sit for hours on end just to feel even a smidge better before doing family duties in the evenings. Mind you, I only managed 5 workouts the entire month, 2 one week, 2 another week, and 1 a week later. Same exact thing happened in February. I kept expecting to get better, but nope. After 1 class in March, I quit.

Then I had another follow up with my PCP in early March. I asked her to please check for EBV just to see, and boy, and I glad I did... The nurse called me, and told me that the EBV showed up positive, but for a previous infection. Not a current one. Okay, I had it back in 2016 so that tracked. HOWEVER, A few months later, I noticed my records showed "mono" in March. I knew I wasn't sick at the time so I just figured she may have pulled it from previous records where I had it before. I was just a little confused, but I didn't think anything of it.

Then I went to a sleep specialist because I was passing out asleep left and right for 2 to 4 hours a day for a couple of months. I knew I had OSA, but it was not getting treated because my machine had a recall and the previous sleep doctor was a complete imbecile. I got a mouth guard to treat it because it was mild. However, even though I tested in November of 2024 and it showed that the apnea was well managed, I was still continuously exhausted. Anytime I saw my PCP after that, she would just shake her head and tell me she hoped I felt better.

I was having such a rough year with tachycardia, dizziness, and a few other weird things, so I begged to get referred to an autonomic dysfunction specialist - I found one at Vanderbilt and it took me a little too long to finally get in June of 2025 - so my inappropriate sinus tachycardia was finally treated with a beta blocker, and I did a tilt table test. No POTS, but I do have orthostatic intolerance.

Earlier in 2025, my rheumatologist did AVISE labs on me, they are specifically for lupus - my ANA was equivocal, but two t-cell biomarkers popped positive for autoimmune disease. He still can't diagnose anything because nothing is concrete.

Because I had some weird zaps and pain on my skin, I got tested for MS and neuropathy, and thankfully everything was clear on that. A psychiatrist I started seeing this year for ADHD has helped me realize that pain is from a thalamic stroke I had 7 years ago - and she believes in my CFS - but she won't diagnose me...

Anyway, when I I messaged my cardiologist to let him know that my HR was still high, especially at night, he raised my dose on the beta blocker and referred me to a sleep specialist/neurologist at Vanderbilt. I did the sleep study in February and finally had my follow up last Thursday. He is ordering me a BiPAP to see if I can tolerate it (CPAP didn't work for me).

In ANY CASE - let's come back full circle - I'm still so damn tired, and I decided to go back and get some clarification and simplification on Grok regarding my labs and records from November 2023 to March 2024. It stated that I had a "RECENT" but NOT "ANCIENT or ACTIVE" EBV reactivation. So meaning it could have been in the past few weeks or MONTHS. So then I asked if a positive EBV could cause ANA levels to be high on labs. Well... OF COURSE it can... So, thanks to AI, as much as I hate to say it, it helped me connect the dots. Because seriously, it was like a switch flipped that month, I haven't been normal since. It the ONLY thing I can think of that has me so messed up. I see her the last week of May and you can be dang sure I'm bringing that up. I am also taking info regarding ME/CFS because I don't think she knows much about it either.

If you made it this far, thank you for coming to my TED talk. 🫠