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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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I recommend that you see an immunologist or an infectious disease virologist that has an interest in viral mediated chronic illnesses. Even amongst specialists there are doctors who do and many who do not treat chronic post viral issues.
There are no specific approved antiviral treatments for reactivated EBV or Long Covid but there are case reports and some studies that could be used to do an off label treatment trial.
Find the right specialist near you.
Example:
https://www.droracle.ai/articles/303322/what-is-the-treatment-for-reactivated-epstein-barr-virus-ebv
Or:
https://discovermednews.com/long-covid-patients-improved-with-chronic-use-of-acyclovir-case-series-studies/
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2 Reactions@tkinder Thank you for taking the time to share this information! I appreciate it.
I also had EBV reactivation. I got a ton of blood work done in 2022 to try and figure out what the hell was wrong with me. I have LC as well and have had it for almost 4 years. I do not ever recall having mono as a kid or ever, but if EBV was reactivated, I was exposed to that virus at some point in my life. I do not think there is any medication for EBV. I just had another round of blood work done. Most of it was good with the exception on my Vitamin b12 which was extremely high, calcium was high and some of regular panel that measures neutrophils, WBC and RBC were different than last year. Strangely, when I had blood work the last two times, my folate was off the charts. B12 and Folate were in tandem, so that has changed. I still wake up with malaise, fatigue, tinnitus...I have joint pain and brain fog...but the fatigue and malaise is the worst. There were no markers for arthritis, although 2 years ago there were. This is a crazy virus. I am tired of it. It is isolating, but having said that, I am grateful as it can and has been worse. I am so hopeful that it will go away. Hang in there and thank you for sharing on here. This has been a place that has helped me over the last several years to not feel as alone.
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2 ReactionsI will also say that I have seen several doctors as well. My current doctor is a believer in Long COVID. There are doctors out there that do believe. When I first got this, I had a doctor roll her eyes at me when I told her I thought it was Long COVID. My bet is that four years later, she knows it is real. There is more research happening, but no real answers. There are ways to treat certain symptoms. It is frustrating. I believe it is about inflammation. Chronic inflammation. I am going to try a concoction and will let folks know if it helps. Apple cider vinegar, ginger, cinnamon, cloves, crushed into a shot glass. I am also going to try the Mediterranean diet. Anything to get the inflammation down. I know that 800 mg Ibuprofen helps, however taking that daily is not sustainable. I also take naltrexone and others have posted about this as well. Whatever works and does the least damage. I am hoping that the apple cider mix shot helps.
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2 Reactions@diverdown1 I had a much deeper understanding of the food allergies covid blessed me with after doing the elimination diet for three months. I had extreme reactions to gluten and sugar with lesser reactions to dairy and blue cheese. If I limit those foods, my inflammation goes down...so if I want a piece of bread, I know I will hurt tomorrow!
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2 Reactions@diverdown1 Thanks so much for sharing your experiences. I am sorry to hear you have had EBV reactivation, and it stinks that their isn't a treatment for it (but that helps me know to just take care of myself and not waste time pushing for EBV testing). My plan right now while EBV symptoms are flared up are to rest more, hydrate extra, and take things that help liver and detox like dandelion and chicory.
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1 Reaction@diverdown1
That’s rights it helps to read about the other stories of you all who are suffering under this really crazy virus which works and changes constantly in the body and reduces live and isolates .
In my case I also did a lot of blood analyses and it seems the herpes zoster virus was activated by Covid .
Strangely the shingles wa directly located over the belly - where my main post Covid problems lays: inactive peristaltic of the column - massive consolations- and a lot of pains with comes with it…
Also brain fog and light malaise.
The HDL and LDL ( coleresterole marker ) are very high- although I are since years on a diet with reduced colesterole etc. and for digestive reasons.
We definitely need more research in the medical world for post COVID and doctors who can admid that they don’t know what to do and are interested to help COVID patients by passing and collecting information and so show the suffering and amount of people who are out there in the world - because it’s a global problem!-to the poliiticians and the healthy public !!!
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1 Reaction@vostie Yes, gluten is an issue now. Never was before. I also have an intolerance of nuts, which is also new. Sugar as well, although I crave it and I never did before.
@lauragwi Yes, when I first started all this 2022, no one could figure out why the EBV reactivation. I know that there are many others and it seems I read a research article about it being part of the LC fun fest as well. I will try and find it and post it here. It makes sense, looking back as I just woke up one Saturday morning about 3 months after I had Covid-19 and felt like I was literally dying. I never got sick as a kid. Strep throat when I was little, but as soon as my tonsils came out, I never had it again (knock on wood). I have never gotten a flu vaccine and I have never had the flu (again, knock on wood). The ANA titer did not flag on the latest blood work, however I still feel awful in the morning especially. This is a crazy virus and I can truly say that I hate it.