Is chronic reactivated EBV different from chronic active EBV?

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.

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!

I am having trouble getting my message to post in its entirety, so I am going to try attaching it as a PDF image.

@swingerofbirch That would be frustrating not being able to talk with your doctor. Your bloodwork indicates that there might be a reactivation of the Epstein-Barr virus since the IgM is positive. Checkout https://ebvhelp.com/labs-diagnosis/ for more info. The pharmacist flagged the Valtrex prescription because it is an odd dose. It comes in a 500 mg and 1000 mg tablets. I'm wondering if your psychiatrist meant grams not milligrams. The psychiatrist is practicing bad medicine if her office does not contact you and explain why she has ordered a new medication! In my personal experience and what I have heard from others, infectious disease is not very helpful. I'm not saying that to discourage you from seeing infectious disease, I just want you to be prepared. Most people with reactivated EBV have better luck with a functional medicine doctor or naturopath.
Again, you can check out EBV.com for more info. I wish you the best in wellness, Marianne

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

If you go to lab tests online there is a good explanation of EBV and antibody tests to be found. I tried to put up a link - but I just joined so this site will not let me. (They probably have to protect against spam on here).
Anyway, good luck to you.

Thank you very much.

That site was helpful and also led to some other sources.

My doctor prescribed 4 grams (4,000 mg). She's known to do very unconventional things (like having me tested to begin with—I was only tested because she seems to be testing all her patients).

I kind of figured infectious disease might not see me. When I called they said they normally see people with HIV and hadn't heard of an EBV case, but my doctor (PCP) is trying to get me in now. He hasn't been too helpful. I've sent him the tables that show how you interpret the results and how I don't exactly fit into any of them, and the only response from the nurse is that he doesn't know about the tests. I sort of rely on him to help me out because again the psychiatrist is both difficult and "out there." She'll say things with complete certainty that are obviously not true but if you question her for a source for example she'll get very defensive. And I need to keep seeing her for my psych meds because it's very hard to get in to any psychiatrist where I live.

A functional medicine doctor is more familiar with the diagnosis. You may want to try one of those doctors as well. They at least won't meet you with disbelief.
That said, it was a world-class medical hospital system that gave me my diagnosis, back in 1999. I should say diagnoses, they found a couple of other things wrong too. Just keep looking until you find a doctor that can help you, is my advice. Many patients with either rare, complex, or commonly misunderstood maladies find they go through several doctors before finding the one that nails down a diagnosis and plan of care for them.

Hi @lisa53, you're absolutely right. New members have a trial period before being able to post links. We do this to discourage spammers.

I reviewed the website you wanted to post and it is indeed very helpful and a legitimate resource that I'm sure members of this discussion group will find useful. Here it is

- Understanding Epstein-Barr Virus (EBV) Antibody Tests https://labtestsonline.org/tests/epstein-barr-virus-ebv-antibody-tests

Thank you very much.