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@lisa53

I was diagnosed with chronic reactive EBV in 1999. I was told there was something wrong with my immune system for it to set up in me the way that it had. I had an initial EBV infection in 1996. It reactivated and I have labs that show it was active in 2001 and 2004. I don't have all my labs but I most definitely had symptoms both times as well as the labs showing reactivation. They told me in 1999 that I would have "mono-like" symptoms for the rest of my life.
We moved. Over the years doctors started to give me the eye-roll when I told them my diagnosis. Then, in 2017 they tested my immune system. Turns out I have immunodeficiency (I have something called specific antibody deficiency that is evolving into common variable immune deficiency). Doctors no longer roll their eyes at me. My cousin has CVID and she was diagnosed with intermittent chronic reactive EBV. Our diagnosis sound very similar. Not everyone with CVID has this. Anyway, it is not your imagination that you have recurring boughts of symptoms and reactivations of EBV. You might want to have your immune system checked. Have them count your immunoglobulin titers and I think there is another thing, CD27 that could be missing. Someone in my group said that is the root of her issue with EBV.
Very few people, even among people with primary immune deficiency have this problem, but they are out there. You are not alone. There is a group on Facebook that can offer support.
You are right the chronic active people are much more serious.
I was told to be careful of my spleen, rest, avoid stress. There were certain vitamins I was supposed to take. My cousin takes antivirals (acyclovir) when hers flares up.
I wish I could be more help. Good luck to you.

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Replies to "I was diagnosed with chronic reactive EBV in 1999. I was told there was something wrong..."

How do you get Drs to do that testing? My Drs think I'm a hypochondriac! Or crazy, or lazy! I'm beyond frustrated with asking bout bloodwork and having them poo-poo me!

@lisa53 Thank you for the helpful information. I'm glad you were able to find some answers!