Did anyone have PEM when they had mono/EBV infection? Or is that just for CFS?

[Hip]

that's why I think the whole viral testing bit isn't giving an accurate picture.

This is the problem scientists have in their efforts to link low-level pathogenic infections in the body to chronic disease conditions.

Merely testing the blood may not tell you much about low-level infections which might be hidden in the organs.

You may only be able to detect these low-level organ infection using an organ biopsy. That's possible for some organs, but you cannot really take brain biopsies from living patients. So neurological diseases like ME/CFS which may involve a brain infection are hard to study.

 

[Rufous McKinney]

I had mono so long ago now that I can't remember exactly what it felt like. I almost might prefer plain garden-variety mono to what I've got now.

For me- it requires remembering being 10, 13, 15 and 22.

So something always went wrong during bouts 1, 2 and 3 (take tonsils, appendics, pneumonia).

But when I was 22, i was in grad school and was again diagnosed acute Mono- and put on Prenisone- this is the only time I was ever given any direct treatment. for two weeks, I did not go to classes and stayed home. I actually- went on numerous very long walks- go figure. I'm just all tired and lymphy.

Not sleeping well- on the Prenisone...heart rate 180 beats per minute. I'm at that time thinking- this is medicine?

How is this helping?

After the two weeks- the Prednisone wound down, tired and lymphy came back. I concluded the Pred was just a waste of time, and I'm back in the same place.

I- resumed the classes I had, the semester was not as glamorous as others- I got a lousy B+ in seminar and that made me mad. I just- pulled out of it- somehow- again.