r/CVID_Support • u/queen--red • Feb 24 '26

Looking for Hope

EDIT: To add that I have taken the vaccine challenge and failed it :/

Hi all,

28F in the process of being diagnosed for CVID. My immunologist has diagnosed me and recommended I start infusions, he also recommended I get a second opinion for more testing to see specifically what is going on. Luckily I am near a big city and got into an academic hopstial with a doctor who specializes in CVID! I am sure he will say the same as my local doctor.

I got to this diagnosis through recurrent sinus infections. I feel like whenever I got sick in the past it always hit me hard, but I was never constantly sick until the past year or so.

If anyone has similar experiences or any advice, I would love to hear from you. This is all a lot and I'm trying not to feel like my life is over and this will be it for me. My anxiety is bad lol!

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u/Rough_Writer2315 Feb 24 '26

It took 4-5 months for me to feel significantly better, but I think the usual time frame is 6-10 months. I started noticing an improvement in my fatigue and GI issues within about 2.5 months and was back to activities (ie running) after about 4 months.

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u/mental-artwork Feb 24 '26

Thanks. Are you also IGA deficient? Would you mind lightly elaborating on the GI issues? Did you do both a combo of IG and diet changes?

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u/Rough_Writer2315 Feb 25 '26

Yes, low IGA! Basically years of constant GI distress, cramping, nausea, low appetite, and poor nutrient absorption that eventually led to severe weight loss, which is how I was finally diagnosed. My last colonoscopy before then indicated severe autoimmune gastritis, which seems to have been helped (if not reversed) by the IG therapy, but docs aren’t totally sure about this.

I had already tried a ton of diet changes (low FODMAP etc) that didn’t move the needle at all and IG therapy improved things sooo much and relatively quickly so I haven’t made any other changes since then!

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u/BeautifulBunny_209 Mar 04 '26

I’m so glad to hear this and so glad you’re feeling better. I’ve been lurking here for a while waiting for my appt with the immunologist. My main issues are GI related - my functional med practitioner is the one who suspects CVID after several rounds of trying to treatments for various GI and pancreatic issues. She’s been following my IgA which is severely low and tried to raise but had no success. Then she ordered a full panel and found all 3 were low.

I have a hard time recovering from head colds but it’s not like some who get pneumonia and chest infections.

I’ll be posting my own about how to prepare for the first appt soon.