Does EBV cause Neurological Symptoms?

Hello! I came across your post today as I was looking online for answers as to why I have been feeling the way I’ve been feeling for the past four months. I was reading what you posted and I realized I have a lot of the symptoms that you were talking about, including some others. I’ve been to the doctor plenty of times, and they keep telling me that my blood looks fine and everything looks fine but I don’t feel fine. I’ve had a swollen tonsil for sometime now and I am getting ready for surgery in March to get them removed to make sure it’s not something else. I had these symptoms a few years ago and also got tested for EBV and my viral load was high. I got told what they tell everybody that that’s normal if you had mono that everybody’s levels will be high. I’m retired and don’t necessarily have a lot of stress in my life so I’m trying to figure out if it is reactivated EBV causing the symptoms then what is making the EBV get reactivated if they say that I am healthy. I was wondering how you were feeling after all this time and if you were able to find some type of treatment or solution that helps you feel better. Just trying not to go crazy because it seems like nobody understands what I’m going through. Hope you’re feeling better!!

I truthfully don't feel better, I have some good days but way more bad ones than good, I am oh so lucky I suppose to have Dr's that seem to really care and treat me with nsaids for pain and uppers and downers for all else, I've resigned my self to this and am pretty sure I'll always have symptoms of it and other things, just get up and do when you feel like it and read (bible) when you don't feel like it. Just don't beat yourself up over it

RP

I am so sorry to hear all of your problems. I had to comment, because I can absolutely say EBV can cause neurological symptoms. I have battled Chronic Reactivated EBV for almost 40 years. The fact that your neurologist made a statement like that is proof they don’t know what they are talking about. It is true that everyone who has had Mono in the past will have high levels in one of the test but not in all four test that is taken to diagnose reactived EBV. There is a pattern that shows and confirms a reactivation versus a past infection. (See the 4 panel test below.). I think I would look for a new neurologist. You may have other issues, but they still should not discount the problems EBV can cause.

I myself had Guillian Barre Syndrome, which paralyzed me for months with a 2 year recovery in my 30’s. Duke University Hospital Drs. Suspected it was from EBV. If you are not familiar with that illness, look it up. It destroys your nervous system, and takes a very long time to recover from.

There is a lot of Reactivation happening now from the C shots. My Drs. At Duke told me to never take another vaccine the rest of my life, and I haven’t but I still have high titers on all four test when tested.

EBV Early AG IgG (Consistent with active or recent primary infection or reactivation)
EBV Nuclear Antigen IgG (Consistent with current or past infection)
EBV VCA IgG (Consistent with Current or prior EBV infection)
EBV VCA IgM (Consistent with recent Primary infection or reactivation. Should be used with other EBV serologies to confirm EBV infectious Mono)

EBV is a beast that is hard to put back in remission. Controlling stress, eating right, nutrition supplements, meds, and plenty of rest helps and is Essential in managing it. Anytime I over exert, I pay for it the next day, with fatigue, muscle pain, and become more susceptible to upper respiratory sickness etc. It is an immune system disfunction and can wreak havoc on many areas of your life.

I have some really good links to some videos in another post. If you follow my name you might can find them, but I’ll try to find them and repost here for your reference.

Find a good Naturopathic / Integrative Dr. who understands the test and will help you through this. I change Drs. Immediately if they discount the existence of Reactivated EBV. How can they help you if they don’t believe you have it?

I do wish you the best and pray you will find the right Dr. to help you.

God Bless,
Kathy

I would have an AIDS test done.

I also was diagnosed back in 1986 with Chronic Epstein Barr Syndrome while in the military.
Fast forward 39 years and symptoms have gotten extremely worse in the past 10 years.
Ask your doctor to run an bloodwork for ANA test on you as Ep Barr is a precursor for a lot of other diseases including auto-immune. That can range from Lupus, MCTD, Sjrogrens, APS etc.
My ANA came up high positive but still trying to get an overall diagnosis from other blood work, APS came up positive as well. Note that not all will have positive blood work results they are not perfect for everyone.
Autoimmune disease in general are very difficult to diagnose with some people, some blood work comes up right away but others dont. It takes a long time to get appointments with some specialist so time goes by and symptoms come and go.

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.

How are you feeling now, i have the same symptoms ongoing for about 3 months now, any updates please let me know.

How is everything now, please let me know, i have exactly the same symptoms i dont know what to do, or if its ever gonna get better.

Thank you. Started vestibular therapy for dizziness and vertigo. They think the symptoms are coming from my vision, but I've only had one visit. If I'm out in the sun longer than 15 minutes, I get spider web like marks on my thighs now too. I take Vit B complex, Vit C, Vit D, Omega 3, L-Lysine, Mg, probiotics and coconut oil in my coffee. Hoping for some relief.

Wtfff, how can this be possible, how can one suffer for multiple years of this illness and they do nothing for us, i wouldn’t wish this disease on my worst enemy. Im really scared for the future