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Cvid


Katybug

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For anyone diagnosed with CVID, do you experience joint and soft tissue pain and migraine that consistently improve with antibiotics then gradually worsen after the final dose?

I am not officially dxed with CVID but the new immunologist feels like I may have a mild variant of it. He says he's had patients describe this pattern with antibiotics to him before. My IgM and IgG total and 2 subclasses are low but not low enough for the official dx.

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This is really interesting to me. I have not been diagnosed with CVID, but I have the exact same response to antibiotics that you describe. Recently, I went on Keflex for a UTI, and a lot of my really annoying symptoms - like brain fog, headaches, and pain - improved immensely while I was on it. About two days after I stopped it, I had probably the worst migraine I've ever had with this illness so far, and it wound up lingering for around 3 days at least. And the muscle and joint pain slowly crept back, to the point where once again it's unbearable. Also, right after finishing antibiotics, I also tend to get a lot of symptoms coming back that I haven't had since the very beginning of my illness.. it's weird.

This has happened before, so I know it's not just the Keflex itself. I haven't considered CVID, but maybe that's something to look into a little more. The current hypothesis is that I may have a chronic, underlying infection causing my POTS, and the antibiotics are controlling it while I'm taking them. When I stop, the bacteria starts multiplying again, and when it comes flooding back, causes a worsening of toxic symptoms (like headache and pain). Don't know if that's truly the case or not - there's a lot of guesswork going on right now!!!

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