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Does EBV cause Neurological Symptoms?
Hello! I am a 44 year old male and have recently been hit hard with neurological symptoms that I am wondering have been caused by EBV flare up.
My first symptoms were 14 years ago. I was under a ton of stress at work and had had some stressful life events. I would come home from work with an “out of body” feeling just from stress. One day at work I felt my skin crawling and then started having Fasciculations all over my body. My neck was extremely tired with a feeling that I needed to rest my head on my hands to hold my head up. I had a feeling as though I couldn’t talk even though I could. I also noticed that my muscles would shake upon use. I was still strong but lifting things would cause a shake in them. I went through various tests (mris, EMG, etc) and everything came back normal. I was finally diagnosed with fiber neuropathy of the brain. They said it might get better but maybe not.
I am a performer and sing at various places. So through the years I have noticed that when I have a stressful performance (singing at NBA games, events, etc) I have attacks on my body afterwards (during periods of high stress). And it seems to damage the area that the attacks happen. It’s like I will get hammered hard by a twitch that might stay for a couple Days on one area, but then it will stop and then I recover. Well about a month and a half ago I had to sing at a funeral and then lead an event the following day which was big time stress. Afterward I had another attack and my arm and leg had weakness which was normal. But, this time it didn’t go away after 3 or 4 days and I panicked. I had a rush of anxiety go through my entire body and then started having intrusive thoughts that are clearly not me.
Current symptoms are:
Feeling of weakness and literal numbness in my toes and the tips of my fingers, more on the right side. My tongue gets sores on the end and is numb. I have swollen lymph nodes that come and go under my arm/arms every 2-3 months. Brain fog, dizziness, shakiness when I use my muscles (lifting),aura migraines, trouble swallowing (which really scares me). A feeling of slowing down in my whole body, feels harder to smile, etc. About a year ago a wellness clinic asked if I I had had mono and I did at 16 years of age. They did the IgG, etc band test and said that it was positive for reinfection. They retested 6 months ago again and said it was still activated. I am currently seeing a neurologist who is doing an MRI in a couple of days They also have me set up to do an EMG test in all 4 limbs in April. I told them about the EBV reactivation but they don’t believe it. They said if you’ve had mono before everyone will have positive bands.
They think it could be BFS that is aggravated by stress at this point, but, they can’t explain the sores or swollen lymph nodes. And my numbness and symptoms aren’t going away like they normally do.
My thyroid panel was low at my primary care doctors, but they acted like it was nothing as one marker was actually in the red and the other two markers were at the very bottom But within range (3rd generation TSH).
Has anyone had symptoms like these from an activated EBV case? I have included a picture of the round tongue sores So weird.
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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