I am so sorry you went through this. I guess I must have had mono at some point in my life. I can't really remember much, but I was young, maybe not even in Elementary school yet. I can only remember around Christmas, sleeping all day under the tree. But, in 2020, while waiting for the EBV panel to come back, a goiter popped out and half my thyroid was removed. Then the panel came back "positive" for recent infection. I had no idea what this EBV was and was not guided by the medical staff about it at all, so I figured it was the thyroid and once the half was removed, everything would be good. Even if I wanted to research it at the time, I couldn't. I was studying for and taking my PchT exam in the 2 weeks off of work from surgery. Then, less than a month later, flying out of state for my 2nd brother's funeral (2 in one year). Then figuring out what to do with my mom. We decided to move her to the SW with me, so had to sell the home, find her new MD's, etc. Now Feb 2022, I got Covid, which I now believe reactivated that EBV. I went to my MD and told him I could not hold my head up, there was confusion and head pressure, like my head was going to split open, and frequent urination. I went to PT and Chiro with little relief. I work from home from a computer. Reading became challenging eventually, not being able to read a straight line(2023) I bought eye drops, but they really were not helping. Then I thought my eyes were changing and I needed glasses. I bought cheap drug store ones, and no help. Then I got blue light glasses, and again, no help. I have been dizzy with vertigo as well, weakness, exhausted. Then in March 2024, I woke up completely disoriented, vertigo, bumping into walls, using the walls to walk, and even vague memories that day of waking up, and yes, memory issues. Then July 29, 2024, electric shocks to my heart and brain, with a tingling sensation from head to toe (2-3 instances). Stroke ruled out. By mid August 2024, I was dine working. MRI showed nothing, EEG, Sleep study. Before the end of August, my right eye got blurry and gritty. Opthalmologist said a Pinguecula developed. Then a sore throat, and red splotches on my leg, one that looked like a target or ringworm. Then I requested my new MD (now on Medicaid bc my old MD office dropped the ball on my LTD) to take the EBV and TSH4 labs. EBV came back positive again, and my Thyroid numbers jumped considerably from August. My Endo upped my med a bit. Dermatology biopsy on the spots showed "Dermatitis," which she admitted was weird bc they don't itch. I went to a Neuro Center thinking MS due to symptoms. They thought it was Sjogrens. Then less than a week later, sores on my tongue as well, burning, left eye was now going blurry and gritty, I can feel my bones shifting, and muscles turning under my skin. My new MD has no clue what to do. Absolutely clueless. I see a new MD mid April 2025. Meanwhile, I went to Rheumatology to be tested for Sjogrens due to symptoms, and my cheeks are red, maybe Lupus? They asked about the blood in my urine for the last 3 years. I told them my MD said it was normal. Well, it is not. So now i have to find out why I have blood in my urine. Throughout all of the chaos, I was supposed to have a new Neurologist(back in January) test for nerve damage and arteries, and he dismissed every order from my prior and new MD as "depression and anxiety." He got a terrible Google review, but it was honest. My current MD will not give me an anti viral. I have brought in reputable articles and he still won't. Nobody has even mentioned spinal tap except a couple of nurses I called on the phone. I feel like I'm dying here and nobody is helping.