- Messages
- 3
- Location
- San Francisco, California
Hello, everyone.
I'm new-ish here. I'm having probably the worst flare of my life with tons of pain and no energy whatsoever. So I find myself in the throes of doing research again.
A little background:
I was sick for so long (years) with infection after infection until i was finally diagnosed with chronic variable immunodeficiency in 2012. I recently discovered that i have low nk cell count *and* function. I also have unexplained iron deficiency anemia, as well as chronic low vit B12, and D- they've done most gut tests, all normal. I get IV immunoglobulin infusions every 4 weeks for my PID and have been doing great as far as infection goes. However, I never went back to my normal, well, self. I was diagnosed with me/cfs in ~2015, iirc.
All the immunologists I've seen tell me that once on IVig, I should feel healthy and normal. Yeah, right! But I really wonder sometimes if my ME/CFS would even be a thing for me if I had a normal immune system. It's a chicken or the egg kinda situation, I guess.
I read all the things about CCI and neurosurgery and i wonder if that's even an avenue worth pursuing for me. I get overwhelmed with information and sometimes wonder whether i even have me/cfs, even though i have all the symptoms. sigh.
Anyway, I would love to hear from people who also have PID diagnosis, if there are any in this group.
Hope everyone is having a good week.
I'm new-ish here. I'm having probably the worst flare of my life with tons of pain and no energy whatsoever. So I find myself in the throes of doing research again.
A little background:
I was sick for so long (years) with infection after infection until i was finally diagnosed with chronic variable immunodeficiency in 2012. I recently discovered that i have low nk cell count *and* function. I also have unexplained iron deficiency anemia, as well as chronic low vit B12, and D- they've done most gut tests, all normal. I get IV immunoglobulin infusions every 4 weeks for my PID and have been doing great as far as infection goes. However, I never went back to my normal, well, self. I was diagnosed with me/cfs in ~2015, iirc.
All the immunologists I've seen tell me that once on IVig, I should feel healthy and normal. Yeah, right! But I really wonder sometimes if my ME/CFS would even be a thing for me if I had a normal immune system. It's a chicken or the egg kinda situation, I guess.
I read all the things about CCI and neurosurgery and i wonder if that's even an avenue worth pursuing for me. I get overwhelmed with information and sometimes wonder whether i even have me/cfs, even though i have all the symptoms. sigh.
Anyway, I would love to hear from people who also have PID diagnosis, if there are any in this group.
Hope everyone is having a good week.
