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Chronic EBV
Following my first bout of COVID in September of ‘24 I have been suffering from what I thought were Long Covid symptoms (brain fog, nerve pain, unstable mood, persistent cough, exhaustion, insomnia-to name a few). My symptoms reached a fever pitch this November as I developed panic attacks due to my inability to “function normally”. I took a leave from work and have been seeking medical treatment. My doctor believes I have pernicious anemia and Chronic EBV (confirmed by blood tests). I’ve been receiving b12 injections three times a week but haven’t really felt any improvement. Is there anything else I can do to help my conditions? Or are there any other tests I should suggest to my doctor to run? I’m sick of feeling this way and want to get back to living my life.
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People will disagree but the only thing that helped me was long term high dose valacyclovir. I was taking 1g every 8 hours for probably 1.5 years before I started feeling normal (Maybe even longer. I'd have to look back to be sure). Coincidentally, I watched my EBV EBNA result drop from 600 to around the 250 range and that is when I started feeling better.
It's not a cure. I stopped cold turkey for about 9 months and started to feel some of the symptoms start to return. Started 1g daily which helped but my EBNA was still rising and I was still feeling some symptoms. I talked my doctor into 2g daily and all my numbers improved. I could probably get away with 1.5 total grams a day but I don't know. I was also weighing about 285lb at the time.
It was a long time of steady decline in my case and the recover was just as slow.
@kenforce
I appreciate the input. I believe my situation has also been a slow decline since 2020 that was then put into hyperdrive in 2024. Did you take any supplements or change your diet/activity level? I understand it is going to be a slow recovery; however, how long did it take you to function well enough to return to work/have a semblance of a life? I think I can probably “deal” if I can get 20% improvement. I know I won’t be firing on all cylinders but not being able to do more than one task a day without severe exhaustion and pain is doing a number on my mental health.
@bbj2009 There is an article on Phoenix Rising called, "The reason why antivirals like Valtrex and Valcyte take such a long time to work in ME/CFS (or don't work at all), according to Dr Martin Lerner."
I caught mine early as my EBNA was climbing up to 600 and was able to see it start dropping. I attached a chart of my data. If your EBNA is over 600 then it's difficult to know if your having any improvement.
One thing I can tell you is even though my numbers where improving I found it more difficult to walk long distance. I kept making myself walk around the block. Before it got better I could hardly walk to the end of the driveway without being out of breath. I was really scared and even had my heart check but everything was ok. One day I started feeling better. It was like a switch flipped. I describe the whole situation to when I was younger and you had to exercise a lot and you get that pain in your side but if you push past that you feel fine.
Anyway, the only number that I can see that shows your on the right track is the EBNA, in my case. Maybe I was lucky to start early...I don't know. Remember, it was not a cure in my case. I still take 1 to 2 grams of valacyclovir every day to maintain but I'm fine.