Possible reactivated EBV

Posted by kann @kann, Dec 1, 2022

I was first diagnosed with EBV in 2017. It took a while to get my doctor to test for mono, as they suggested my fatigue was normal for a mom with young children. Coupled with my fatigue, I had two symptoms that really stuck out: very sore throat and heavy / weak arms. I recovered, but it took a few months to get back to my old self. I experienced similar symptoms for several weeks after high amounts of stress in both 2020 and 2021, but possible reactivation of EBV was readily dismissed without testing. I had COVID in summer 2022 and recovered. Two months later I was experiencing all over weakness, heaviness in my arms, joint pain, sore throat, extreme fatigue (again after high levels of stress). I struggle to lift things that I previously had no issue lifting. This has now been going on for about 10 weeks. I am a fairly active person and am experiencing pain and long recovery time after physical activity, along with a noticeable decrease in performance. 10 weeks ago I immediately asked my doctor about EBV reactivating, but was told it’s extremely rare. My doctor has tested my thyroid, and screened for MS. Tests have come back with no concerns. I pushed for further testing and the recently got the following results:
EBV Nuclear Antigen IgG Antibody >8.0AI

My doctor tells me it’s impossible to know if my EBV reactivated because it’ll always be in my system. I am told that I am healthy, that this likely has more to do my summer COVID diagnosis and they suggested an anti-depressant.

My questions are:
Should I keep pursuing this, or do I just need to wait it out and hope to recover in the next few weeks?
Where can I turn for answers?
Is there anything I can do to help ease the symptoms?

Thank you.

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veeveen23 | @veeveen23 | Jun 30, 2023

Hi, While I have no information for you as I’m recently diagnosed with EBV and know not much, I fully understand your plight, and am livid with doctors who dismiss this debilitating disease, and say it’s either depression or menopause! It’s insulting. I’d say keep advocating for yourself and demand answers and help. Prayers you find what you need!

januaryjane | @januaryjane | Jul 3, 2023

You can tell if you've had a recent reactivation. I've have EBV that reactivates at times. It may be rare because there isn't a lot of research on it, like a lot of other things. My infectious disease Dr wouldn't even see me again. My old gp said to eat red grapes and drink instant carnation breakfast. I eat healthier, learn my limits with energy. Spoon theory. Its helped to manage stress to manage flares too. Listen to your body, learn limits, manage stress. Hope you find relief.

kenforce | @kenforce | Jul 3, 2023

The doctors don't understand EBV and they surely don't believe in CFS. I saw a post on Reddit where doctors were saying it's all in the head. My last doctor wouldn't do anything and he ended up working for the Mayo Clinic. In my experience, I started feeling better when my EBV Nuclear EBNA IgG dropped below 250. It was close to 600 in the beginning.