Epstein-Barr Treatment for Long Covid?

Posted by snakexeyes @snakexeyes, Jul 28, 2022

First, a little background: I'm 9 months in to Long Covid and just ended a treatment regimen designed by the InCellDx / Innovative Bioanalysis research group (Dr. Patterson et al). After 4 months of many medications that produced no results and only decreased my quality of life with side effects, I'm calling it. The only medication that improved my functioning was Ivermectin (which did so dramatically), but even that has plateaued for several months now. I'm now waiting until the end of October to be seen at Stanford's Post-Acute Covid Syndrome clinic and have little to no hope for that either.

The only explanation for my Long-Covid that has ever made sense to me is the theory that the virus re-activates latent Epstein-Barr in the blood. I had a very bad case of mono from age 15-17 that absolutely wrecked me, and some of my covid symptoms resemble my experience of mono, so this theory makes sense to me. For those of you who resonate with this theory and are seeking / have found treatment based on this assumption, what are you doing for treatment? Are you being prescribed medications, infusions, etc? I would be so grateful to hear about anything you may be doing or may have heard others are doing. Thank you!

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@law59

@milton10 cannot thank you enough for validating what so many of us have been saying and told no tests and nothing can be done. 30 yrs ago the doctor I worked for finally diagnosed my EBV after witnessing countless other healthcare systems failing me for over 10 yrs. Now the same scenario when I say my EBV reactivated with covid and continues over year later with post covid, told thats not possible and nothing can be done ! So again thank you!!!

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law59 I am so very sorry for your experiences battling persistent EBV. I always maintained that after my first bout of mono 30 years ago, I was never the same. I have mild flare ups still. In my case, I wake up with very puffy eyes and facial swelling and think, "Here it comes!" The next few days, I experience significant fatigue. Then the symptoms go away. I realize that others experience persistent EBV in other ways, many more severe. I am a physician, but quickly learned not to talk to doctors about what was going on because they dismissed my complaints. I would also get the comment, "You know, doctors make the worst patients."

It is very difficult to suffer from an illness that is largely undetectable by lab tests. My great sympathies to anyone in this position. I am very grateful to Mayo that we have this forum where we can listen to, learn from, and support one another.

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Just yesterday I got blood work results that I am positive for active EBV. I never recall having mono as a kid. I have been searching for an answer to overwhelming fatigue since I had Covid in 2021. I went to a new Primary Care Provider on Monday and she actually listened and agreed my fatigue might be caused by Covid activating latent EBV. After reading about it last night I understand EBV antibodies are of different types and complicated. I also read about long term risk of cancer due to EBV. I am now worried about that. Never ends……

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I had the same conclusion that it was Epstein Barr that activated Long Covid. I got the Omicron virus in Jan. 2022 and then started shortly after with LC symptoms. Finally I was tested positive for EBV in June 2022. EBV activated and set off my body with all kinds of long covid symptoms. I did have a bad case of Mono and then EBV in my teens.

And then in the fall of 2022, I found out through chest X-rays that I had thymoma cancer (never heard of that). I feel it was activated by EBV. It was thankfully removed successfully in Jan. 2023. I am ever so slowly getting better, but who knows if I will ever fully recover. I wish you and all of us ease and wellness...and that research can figure this shit out!

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@lmoross

Just yesterday I got blood work results that I am positive for active EBV. I never recall having mono as a kid. I have been searching for an answer to overwhelming fatigue since I had Covid in 2021. I went to a new Primary Care Provider on Monday and she actually listened and agreed my fatigue might be caused by Covid activating latent EBV. After reading about it last night I understand EBV antibodies are of different types and complicated. I also read about long term risk of cancer due to EBV. I am now worried about that. Never ends……

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I am curious, what blood work test did they do to confirm you are positive for active EBV? Was it EBV-EA-D (IGG) ?

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After speaking with the nurse she interpreted my results to mean I had infection in the past, not now.
They tested for EBV ab IGG and
EBV ab IGM and EBV NA.
Only positive for IGG, indicating the infection was in the past. However they cannot tell how recent it was.
Not tested for EBV ab EAD, at least it did not show this on the report to be the same as IGG. The antibodies for EBV are very complicated.

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@jocelyn77

I started taking Valtrex once a day. Within 24hrs my brain fog lifted. I was sleeping 12hrs a day, the fatigue has gotten better and I'm hopeful I'm on the path to recovery.

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That´s wonderful to hear.
Are you still doing better than before?
I´ve just resently had it prescribed.
I´d like to ask if you have had to take it continuously? What dosage do you take?

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@lmoross

After speaking with the nurse she interpreted my results to mean I had infection in the past, not now.
They tested for EBV ab IGG and
EBV ab IGM and EBV NA.
Only positive for IGG, indicating the infection was in the past. However they cannot tell how recent it was.
Not tested for EBV ab EAD, at least it did not show this on the report to be the same as IGG. The antibodies for EBV are very complicated.

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Yes, EBV antibodies are complicated! The information I am getting is that the test I mentioned, EBV-EA(Early Antigen) IGG test is the true indicator of current viral replication going on (or very recently). It is very hard to find a physician who knows anything about this. I am searching...
I very much want to try Valtrex but just getting an appt. with a provider who will prescribe that for me is becoming quite the challenge!

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@julesmango

I too had mono at 19. Now long Covid 19 months. I think EBV was reactivated. Not until I went to Nova southeastern U in Ft Lauderdale FL to Chronic fatigue specialist, 2 months ago, did I get someone who understood. I am taking Valacyclovir 500 mg 2 times a day. Seems to be helping. They also recommended K pax immune vitamins that have special mitochondria formula that I will start soon. Also they recommend Small dose of Naltrexone. I am waiting to see if these other changes help first, as I don’t do well with drugs.
Hope this helps. See my long Covid posts for other comments.

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I'm into long covid for 17 months. Seeing a neurologist on April 24 too

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@patbrown678

I'm into long covid for 17 months. Seeing a neurologist on April 24 too

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Specific long covid program at University of Alabama. Maybe most comprehensive in world. Look for--UAB long covid on internet

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I had Covid 12/31/20. Found out in November 2021 I had reactivated Epstein Barr. I was offered no treatment or help

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