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Labs for Epstein-Barr Virus (EBV)

Messages
53
I’m going to get my labs done again (I have a PCP who will run anything, but does not have specialized knowledge of CFS).

Am I missing anything for labs? Should I request anything more specific for EBV?

I am 90 percent sure I had a reactivation of Mono this week. Fever, swollen glands, massive painful tonsils - the only time I’ve felt like this is when I had mono in the past.

any advice would be much appreciated!
 

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Messages
53
Yes, I’d like some proof (or at least to rule it out) that I’m having EBV reactivations. I’ve been diagnosed with active mono at least 3 times before the age of 20. I can’t remember if they tested me or made a clinical diagnosis though.

To be safe I think I’d do the panel and the PCR.

thank you all for the responses!
 

katabasis

Senior Member
Messages
157
@Golightly716, merely testing the VCA and nuclear antigen are not sufficient to distinguish previous EBV infection with reactivated EBV. What you really want is to get tested for EBV early antigen - this only shows up while EBV is active, and will go away a few months after it resolves.

That said, antibody tests are not 100% accurate, and if your symptoms match up closely with EBV reactivation, you might want to give something like famciclovir a shot regardless. It's a fairly safe drug and you might be able to convince your doctor to prescribe it to you with only the VCA/nuclear antigen test.
 
Messages
53
@Golightly716, merely testing the VCA and nuclear antigen are not sufficient to distinguish previous EBV infection with reactivated EBV. What you really want is to get tested for EBV early antigen - this only shows up while EBV is active, and will go away a few months after it resolves.

That said, antibody tests are not 100% accurate, and if your symptoms match up closely with EBV reactivation, you might want to give something like famciclovir a shot regardless. It's a fairly safe drug and you might be able to convince your doctor to prescribe it to you with only the VCA/nuclear antigen test.

Thank you! I think I’m obsessed with finding some sort of smoking gun or some reason why I’m so sick and tired all the time. I have 7 sisters who’ve been exposed to all the same things and I’m the only one like this. I just don’t get it.

Have you tried Famciclovir? If so, how was it and what was the dose?
 

katabasis

Senior Member
Messages
157
@Golightly716, yes that's the one.

My early antigen was 21.5 U/mL, which is a definite positive. I did try famciclovir for a while, 500 mg once per day. I did not experience any side effects from it, but I also didn't get any sort of improvement. The one minor benefit was that I stopped getting cold sores (since famciclovir is also effective against herpes). Eventually I stopped taking it because I'm on a ton of different medications and there are risks to polypharmacy which I wanted to reduce.

It seems like for a lot of people (the exact percentage is unclear), infections such as EBV are not the cause of CFS so much as a result of it. In my case, it seems that whatever immune dysregulation is causing my fatigue/pain/PEM/etc. is also, separately, failing to subdue my latent EBV, the EBV having little to do with my symptoms per se. I hope that you are part of the percentage of people who see at least some benefit, but as I always say - hope for the best, prepare for the worst.

Let me know if you have any other questions.
 
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