Does anyone else have CVID?

Posted by runnergirl @runnergirl, May 21, 2022

Has anyone here in the group who has idiopathic small fiber neuropathy also been diagnosed with Common Variable Immunodeficiency (CVID)?

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lisa53 | @lisa53 | Jul 4, 2023

For those with CVID and neurological issues, you may find this enlightening: https://www.youtube.com/watch?v=lnRgUDPQhfY

lisa53 | @lisa53 | Jul 4, 2023

They also have new research and studies out regarding fatigue, pain, and CVID:
https://www.youtube.com/watch?v=m2MvN48Re1E

sb4ca | @sb4ca | Jul 4, 2023

In reply to @lisa53 "I have autoimmunity with mine (25% of people with CVID do) and it is difficult." + (show)

I'm so sorry. My sister has had plenty of autoimmunity herself and I see her suffering as well. I have opportunistic bacteria and viruses

lisa53 | @lisa53 | Jul 4, 2023

In reply to @sb4ca "I'm so sorry. My sister has had plenty of autoimmunity herself and I see her suffering..." + (show)

I get reactivations of Epstein Barr Virus. I had to have tooth out despite a root canal and three courses of antibiotics (immunologist said it could kill me). I had cellulitis in my ring finger after tripping and my ring digging into my finger (had to have my wedding ring cut off).
My CVID is worsening. I am not on treatment yet. Apparently, not enough infections to justify it. I will get there, they say.
I try not to think about it too much.
My cousin has CVID and problems with bacteria and she has RA. She is crippled now. She also has the problem with EBV.
I am sorry you go through this.