Does EBV cause Neurological Symptoms?

Posted by minnerhead1 @minnerhead1, Mar 13, 2023

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.

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

You and I both. I feel like the MD's today got their license out of a cracker jack box. I'm pushing full speed now, so hopefully someone will get it right.

REPLY

I wish you best of luck please keep us updated

REPLY
Profile picture for abbynormal63 @abbynormal63

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 .

Jump to this post

Hello, abbynormal63.
I am so sorry such a long time has passed. It has been difficult. If you read this, please let me know.
I hope you are doing better.

REPLY
Profile picture for minnerhead1 @minnerhead1

Wow 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.

Jump to this post

@minnerhead1
hey I was just reading this now and wanted to know how you are feeling today and have your symptoms gotten better?

REPLY
Profile picture for minnerhead1 @minnerhead1

Thank 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.

Jump to this post

@minnerhead1

Hi, EBV can cause neurological symptoms, please see a link below:
https://www.bing.com/search
However, one-sided weakness, like you mentioned numbness more on the right side, could be due obstruction to blood flow, like pulmonary embolism, Transient Ischemic Attack, or due to herniated disks that are pressing on arteries. Could also be renal artery stenosis, if blood pressure is going up during those episodes. If numbness and weakness due to obstruction to blood flow, then blood pressure can be going up to 170/100 levels and above during the episode. It may be good to get Kardia Mobile device and check your EGK yourself on the go when those episodes are happening.

I had EBV in Feb of 2025, as a single episode with similar symptoms. It was post stem cell transplant. EBV titer was 10000 and later went down to zero, but the symptoms persisted for different reasons - post-transplant fatigue, autoimmune condition, iron deficiency anemia, extremely low Vit D, low Vit B12, malabsorption of vitamins and nutrients due to autoimmune condition, tissue hypoxia (low oxygen in the blood) due to anemia.
Low thyroid hormones could cause some of your symptoms, but not all of them. To start Synthroid, hormone replacement, may still be a good idea.
More likely, multiple causes are involved.
It could be helpful to check your vitamin levels, and to get blood tests for multiple causes, including autoimmune conditions. Pernicious anemia (resistance to Vit B12) and iron deficiency anemia (blood counts can be normal, but low Iron, or low Transferrin and Ferritin) can cause many of your symptoms due to tissue hypoxia - low oxygen in the blood, even if the lung tests are good and your perfusion is 100%.
Another possibility is Lyme disease or another infection due to tick/mosquito bite. It could happen, even if you did not have typical Lyme rash presentation.
May be helpful to see a Rheumatologist for all autoimmune and Lyme.
More Blood tests could give the answers.
Hope, this helps.

REPLY
Please sign in or register to post a reply.