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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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Hi, minnerhead1 @minnerhead1
Although I don't have all the symptoms you describe, I do have many of them (+ others), and I have been suffering terribly because of Chronic Fatigue Syndrome. (I also have hypothyroidism, fibromyalgia, osteoarthritis, migraines, tinnitus, and a bad depression as a consequence of all the above. I can cope with everything. Everything except CFS, that is. ) I am surprised the doctor does not know that one of the many symptoms of CFS is swollen lymph nodes, but really I should not be surprised as most doctors know little or nothing about CFS.
I myself got sick with CFS many years ago, because just like you I was going through a huge amount of stress. After many wrong diagnoses (MS and others) they found out I had a very high Epstein Barr virus. So, yes. You can absolutely get many of the symptoms you describe in your post if you have CFS. I only hope that since you are still young you can get rid of this disease. But in order to do so, you have to try eliminating as much stress as only possible because stress is the no. 1 enemy when it comes to Chronic Fatigue.
Wishing you all the best.
I was diagnosed 1.5 years ago with chronic Epstein barr. Now I have chronic fatigue and recently I’m having osteoarthritis in my hands which I’m told is hereditary by my doctor I’m have I numbness in my finger tips now. Sometimes I find it hard to remember words and my stress and depression do not help. I am on two kinds of drugs for energy Xanax and antidepressant high blood pressure thyroid meds corticosteroids high cholesterol , meds for restless leg syndrome and hormone replacement . I have days I can feel the swollen lymph glands in my throat. I only see one doctor and the diagnosis took 2 years . Yes if I have too much stress my muscles tighten up especially the back of my neck. Trying to do too much brings on stress not doing enough brings on stress. The fatigue is frustrating due to I’m not a set around and relax person . I will burn myself out doing too much and can sleep around 12 to 15 hours when this happens . Concentration on small
Details has become frustrating. I had just completed my 4000 hour internship
and acquired my associates degree and license for LCDC counseling while I kept getting sick over and over with upper respiratory and asthma. The I was diagnosed with mono and within a year I had mono twice and finally I was sick for 3 months with my blood count way past anything normal
Within testing range . I know I’m blabbing away but this is the first place I’ve found with people. Who are experiencing the same diagnosis and due to its rarity I have been alone with what I’m going through . I have a great family but unless you have this it’s impossible to understand all the symptoms,, side effects from the drugs , and never knowing if today will be a good day or a just let me sleep day .
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1 ReactionWow okay. Thank you so much for responding Abby, means a lot to me. Prayers for your health and recovery. I have been fighting taking medications and am on a lot at supplements. Trying to also get my mind right as I truly believe that is what got me to where I’m at. Also pressing in, praying, and believing for the best. Thank you again for the reply.
Thank you so much Christina for your reply. I didn’t think of CFS. I’ll look into that. Did you have an EMG done? MRI? Prayers for your recovery.
@minnerhead1
Hi, @minnerhead1
I know what an MRI is, but I am not sure what an EMG is exactly (is it elektrocardiogram?).
MRI? No, that is, yes, I have done several MRIs, but never in relation to CFS.
Thank you. I hope the same for you. Don't forget NOT to stress, ok?
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1 Reactionabbynormal63 (@abbynormal63)
Hi!
Please don't feel lonely.
I have struggled for years and I am still struggling A LOT with CFS. I know it is a terrible thing to ... not to live with, but mainly to simply try to survive with.
It's though because it is impossible for others to see what they cannot see. Your arm is not broken, something they would get right away. Don't give up, though. I too thought I was alone. Unfortunately, there are many of us out there. We all struggle pretty badly.
Don't give in and please know that you are not alone.
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1 ReactionHi,
I am sorry you are going through these health struggles. I fully understand and also been dealing with an EBV flare up due to it being triggered by COVID. So now doctors are labeling me long COVID with chronic EBV. I started seeing a Functional MD and have gotten the most help with my symptoms. He has me on the following protocol:
1. High dose Vitamin C IV
2. Ultraviolet Blood Irradiation (UBI)
3. Hydrocortisone
4. Methylene Blue ink mixed with Vitamin C (see book below)
5. Nebulizer with food grade peroxide
I also attached a book that was very helpful about EBV.
I will include you in my daily prayers. I wish you well.
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2 ReactionsThank you so much for the reply! Had an MRI done yesterday and everything looked good. I am a mystery to the doctors. I am really wondering if it is the EBV that has caused me so many problems for the last 14 years. Prayers for you as well and thank you again for the protocol.
Thank you so much Christina.
Thanx for the reply ! I have a lot going for me . Most importantly my doctor was able to diagnose me by constant blood work due to the upper respiratory and asthma that just wouldn’t let up the first year and they diagnosed my first case of mono immediately. He let me know after that the other stuff I was dealing with didn’t worry him because he could control asthma
And bronchitis but the mono was concerning. It took another 8 months or so and bam it was back . Do about 2 years for a diagnosis. My husband had been through a lot because the side effects from the drugs the first year really made me paranoid and nervous . Not working did a number on my head . I was 55 when all
This started and had gone into school debt for my associates had compleated my 4000
Hour internship working with felons in a rehabilitation prison and acquired my Texas license. I did not want to stay at home I’ve always worked . So that was a huge adjustment the first year . Not n being able to keep up with my grandsons and have them at my home on weekends if they had anykind of sniffles etc . I’ve talked enough about myself . Let me know what your willing to share .