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What to do for EBV Reactivation?
Hi everyone, I have heard a lot of talk about Epstein-Barr Virus (EBV) reactivation and long-COVID, but wonderful if one is found to have EBV reactivation, how is it addressed, managed, or treated?
Here's why I ask:
I have had long COVID 6 years. 3 years in, I got mono, which really set me back. (long-COVID plus post-mono sure is a suckey double whammy to have to deal with - but thankfully I can still function somewhat, it's just a slog every single day).
Ever since I had mono, in addition to my long-COVID flare-up episodes that floor me for 1 to 2 weeks, I have also had what I feel are flare-ups of mono symptoms that are distinct from my long-COVID symptoms (stiff neck primarily, but then a heavier fatigue than long-COVID, nausea, pain in the spleen area). Right now I am in a flare up and asked my primary to do an EBV panel - they are flat out refusing and this is just one in a line of events of various primary doctors failing to give any credit to EBV reactivation or the fact that my periodic symptoms could be from post-mono (on top of long-COVID).
So, I decided to just skip fighting to get the test (won't do any good anyway) and assume when I have these episodes of a shadow of mono symptoms returning, and that EBV is likely reactivated. You guys can help me more than my doctors at this point, so throwing this question to you:
Has anyone been tested for EBV AND treated for it? Did it help or not? Why is all there talk about getting tested for EBV reactivation in long-COVID patients...what have your docs said can be done if you do have it? (Side note: I was tested for EBV reactivation about 4 years ago in part of the post-COVID testing I had to do, but that was before I had mono, so it came back negative, plus I have switched docs three times since then, so I can't ask what they would have done at that time if it was positive).
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@meike Hi, I have not found anything from my doctors. I do believe that chronic inflammation is a big part of this illness. There is research going on and I try to post what I can. I suggest going to these wesbites. Some of the research is clinical but I believe it is important information that a doctor, maybe your doctor needs to see. It might help. I am sorry that you are experiencing this as so many of us are.
https://recover-tlc.org/
https://longcovidjustice.org/resources/
https://www.longhauler-advocacy.org/graphics-videos-webinars-training
Weinstock, L. B., Brook, J. B., Walters, A. S., Goris, A., Afrin, L. B., & Molderings, G. J. (2021). Mast cell activation symptoms are prevalent in Long-COVID. International Journal of Infectious Diseases, 112, 217-226.
https://doi.org/10.1016/j.ijid.2021.09.043
https://rdcu.be/fvsj0
The Immunology of Long COVID
https://doi.org/10.3390/pathogens10060763
This is a research article about Long COVID and EBV.
Rohrhofer, J., Graninger, M., Lettenmaier, L., Schweighardt, J., Gentile, S. A., Koidl, L., ... & Untersmayr, E. (2022). Association between Epstein‐Barr‐Virus reactivation and development of Long‐COVID fatigue. Allergy, 10-1111.
https://doi.org/10.1111/all.15471
I do not know if you will be able to have access to some of these. If you go to Google Scholar, PubMed or other search engines for research studies, you can Type in searches for Long COVID. There is some information out there. I am not a doctor, but I have found that fasting for a day or two helps me with some of the malaise and fatigue. "They" know a lot about symptoms, but not much about how to stop this. My doctor helps treat some of my symptoms, but the fatigue, post-exertion malaise, tinnitus, brain fog and other weird symptoms, I just try to handle in the day I am in. I empathize and hear you. I want my healthy life back as well. Thank you for your post. There are others on this site that share what has helped them with some of this. Peace to you and hang in there!
I too have long Covid, four years now. Earlier on I heard about the EBV connection so asked my family Dr. to test for it. It came back positive, but he did not suggest any treatment.
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2 Reactions@sandyviolet
My understanding is that there are two types of tests. One shows if you had a virus in the past, and another type of test shows if you have an active infection. With some viruses, it is hard to tell if you have an active infection because the testing is so time sensitive. Sometimes the test itself is unreliable.
I think we're flying blind most of the time in my case.
Unless you know you have an active infection, I'm not sure what else they would do. Refer you to Infectious Disease?
I am on a suppressive antiviral because I have had documented reactivations of my body's personal preference of viruses.
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2 Reactions@sandyviolet Same here.
@drbf Yes. I had a "re-activation" of EBV, which I never even knew I had in the past. I also had a re-activation of Parvo...of all things. I did dog rescue and was around two puppies that passed from it...awful, but I did not know that it was a virus a person could have. I know that some people get EBV with no symptoms. I never recall having Mono as a kid or teenager but I know a lot of friends who had it. Apparently it can also show now symptoms. I am convinced that LC boils down to chronic inflammation. And I agree...flying blind is the perfect way to describe this 4 year nightmare.
around 90% of the population is infected with EBV, the reactivation just means your immune system isn't able to fend it off adequately now. In my case I think it's depleted T-cells not showing up for the fight.
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2 Reactions@mikesixtysix I agree and the research says that as well. There is research about the LC virus and Mast T cells. It is all about the immune system. Our bodies are essentially fighting themselves.. It is crazy.
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