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.

birdiemomma | @birdiemomma | Mar 18, 2023

In reply to @bekah "Oh, so sorry! Luckily for me it has not had any side effects." + (show)

I might try it again and only take it once a day. It took several days for side effects to show up. It was really helpful when I was taking it!

bekah | @bekah | Mar 19, 2023

At least with the version I bought, the max dose is three pills per day, so I started with one pill per day for a few days (to see how I would feel), then increased to two, and after a week or two increased to three. Best wishes to you! Everyone's body responds so differently to meds.

frking | @frking | Mar 20, 2023

I saw a functional medicine nurse practitioner who treated me with supplements as though I had EB, since it is a virus and there is nothing else at this point. My blood work also showed that at some time in the past I had EB. It must have been very mild as I do not remember being as sick as EB makes you. I have had long covid for 13 months now and my symptoms are decreasing and some have completely left me. I did sleep a huge amount of time and still occasionally need a nap, but am feeling so much better.

jforth | @jforth | Mar 21, 2023

In reply to @frking "I saw a functional medicine nurse practitioner who treated me with supplements as though I had..." + (show)

What specific supplements did the nurse have you take? And do you attribute your much improved health to those supplements?

rhondajg | @rhondajg | Apr 2, 2023

I also compared symptoms early on to how I felt with Mono 12 years ago. I’ve wondered if there is a common condition we all with share with PCS.
They can do a blood test and tell you if Mono Reactivates. My Mono 12 years ago was a second time I had it.
Good luck!

clays23 | @clays23 | Apr 3, 2023

I have had post Covid fatigue and dizziness since last March 2022. I just discovered Mayo Clinic Connect discussions the other day. And, I just started taking L-lysine 1000mg 3x day. I feel better already! I don't want to be prematurely optimistic but I also discovered a vitamin and supplement regimen suggested by @jenchaney727 in 2017 to treat EBV reactivation. I believe that is my primary issue. Go over to the Infectious Diseases-"treatment for chronic EBV" discussion group to see what others are saying. There seems to be valid evidence from studies that there is definitely a significant connection between EBV reactivation and many symptoms of long covid. On there people also suggest a You Tube channel, Dr. Been Medical Lectures in which he clearly explains the connection between Covid and EBV reactivation.

P.S. I have had to beg my NP for the full EBV antibody panels specifically including EBV Early Antigen D AB (IgG). My levels are sky high signaling a EBV reactivation. Most traditional western med. docs know nothing about any of this. She doesn't know what to do with this info and is in the process of referring to an infectious disease specialist. Meanwhile, I am trying to self treat. It could be a long time before I get an appointment.

Best of luck to you...hope some of this info helps!

clays23 | @clays23 | Apr 3, 2023

P.S. Were you seen at Stanford? If so, did it help? What did they prescribe?

frking | @frking | Apr 4, 2023

In reply to @jforth "What specific supplements did the nurse have you take? And do you attribute your much improved..." + (show)

I was taking L-Lysine daily, 500 mg oregano oil 2x a day for three weeks. Then I had blood work done, not the routine work up., but one that showed that at one time I had Epstein Barr. It must have been very mild as I have no recollection of having it. Then Olive leaf extract 500 mg twice a day for three weeks and the L-Lysine. Then take andrographs 500 mg 2x a day for three weeks. Then start over.
Honestly I cannot say that this regimen is what made my symptoms go away and make me feel better, or it was just time. Aside from the daily horrific perspiration, my symptoms, except the occasional nose odor, are gone. It is 13 months since the long covid began-- February 2021, and that arose three months after covid--Oct.Nov. 2021 I started the above protocol in October--2022. Is it gone?? I'm not sure as I now have swelling of my lower face and lumps above my clavicle. Seeing a specialist later this month. All other doctors had no idea what caused this--maybe long covid. I believe my lymphatic system is clogged.
Good luck!!

milton10 | @milton10 | Apr 4, 2023

I wrote this comment elsewhere but will repeat as people are interested in EBV. I am a physician, got mono in med school when I began seeing patients, was down for a month. I had mono again as a resident although tests were negative and I don't think anyone believed me, I had all the same symptoms including massive swelling around my eyes, was down for another month. Flash forward 30 years and I contract COVID, symptoms at first were respiratory, worst asthma of my life. Then I get horrible sore throat and terrible fatigue. I told my primary I think I have mono, she said "no way!" but was kind enough to run a mono spot with other labs. Well the mono spot came back positive! Yes, it turns out COVID resurrects mono! I'm just fortunate the mono-spot was positive because I know from personal experience that you can have mono and the tests are negative and no one takes you seriously.

My condolences to anyone experiencing mono symptoms with COVID. My symptoms are finally waning after about 5 weeks of mono but I still am not well after contracting COVID 7 weeks ago, other problems remain.

law59 | @law59 | Apr 4, 2023

In reply to @milton10 "I wrote this comment elsewhere but will repeat as people are interested in EBV. I am..." + (show)

@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!!!