I just got some of my test results back from my specialist and also had the follow-up appointment.
I had extensive EBV testing, with the results coming back extremely high. Anything over 22 was considered "high" and my number was 476! The specialist said it was extremely high, not normal for just an exposure to mono. All of my symptoms started with a horrible case of mono over 12 years ago.
My vasopression was also not even detectable, which influences the fluid levels in the body. This could be the cause of my POTS. The EBV can actually influence the vasopression.
I need to retest for a specific Natural Killer Cells test.
I got some new information, which will hopefully lead to new treatment... I'll try to keep you posted!
I can't do the things that my kids need me to do to have a fun and active life. I have to cut our outings short. Today, I tried my best, and then had to come home and just sat in a chair with a lot of pain. I often feel that I am making my symptoms up, but then the pain is certainly concrete. It's hard not to get sad about it. It's impossible to explain to anyone who is trying to support...
just received update this morning so sharing here - good morning : )https://chronicillnesstraumastudies.com/mecfs-freeze/