Some things in this article are ringing similar or our case — particularly the part about normal T, B and NK levels, normal IgM levels, but then all of these problems with infections —

(I admit I can probably only understand about 20% of it though…just enough to put some pieces together—)

I think this article is saying disease progression is different in different patients — Noah started getting sick when he was 2 years old (after he left the house and started preschool), and I’ve been getting worse and worse and I’ve gotten older—

Could this disorder also explain why IVIg makes me feel better? IVIg has made me feel better, from the moment I started it…if it wasn’t for this salivary gland removal infection, overall I was doing better than I had for years on ivig—

Can we start Noah on IVIg (even just a low dose if we have to pay cash for it?) Ask Dr. Kachru? IVIg will help Noah feel better, and it will help him gain some weight too—

I’m really impressed you stumbled up on this issue…and I’m very grateful. Of all the ‘fancy’ specialists Noah and I have been too, I love that you found one of the best clues to date 😍. Noah and I look so healthy, I can see most of these specialists blowing us off (not the NIH, but almost everyone else), and I’m always snapping at them “you should talk with Noah’s doctor or talk directly with my doctors directly — they know something unusual is going, they’re the ones on the front lines helping us stay alive, and keeping us alive is a constant, never ending job—nothing about this is normal —ask them—“

It sounds like there’s a lot of variations in severity of disease with this CD 19 problem, and Noah fits right on the potential spectrum—not the most severe case, but definitely bad enough to cause problems all of the time—

Thank you very much. I’m almost positive this is it. It even effects the complement system, which I’ve suspected was somewhat involved somehow—

Now let’s figure out how to test it 😍👍. I’ll start researching around for labs who can test this…

https://www.sciencedirect.com/science/article/pii/S1521661615300279