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I get so confused by all this. A while back, I think it was Ursula

who said it sounded like I had CID, not CVID. I have low B cells

(about 20% low), I have almost non existant NK cells, my CD 3 and CD

56 are low (relate to NK cells), and I have a specific antibody

disorder. My immunoglobin levels are normal with the exception of

one subclass. What I have been told is that the parts are there, but

they are not accessible because of the B and T cells issues.

So after Ursula asked about CID, I asked Dr. about the

possiblity that I had CID and not CVID and he said that he has tons

of patients that are CVID with B and T cells disorders. He did not

change the diagnosis. As a child, I did have an low overall IG level

and my understanding is that, left untreated, as you get older, it

can evolve to CID.

There are so many times that I don't feel like we have the " real "

answer to what our problem is. No one has done genetic testing and I

think there has really been a lack of testing to really illustrate

the picture. No one has ever done T or B cell function tests on us

and I think it has gone as far as that the enzymes that drive the

immune system (cannot think of the name right now) has never been

tested. or maybe they have and I just don't know....it seems that

Dr. would make sure all those tests were done before

assigning a diagnosis....he is very diligent about making sure that

blood work was done/ is done.

I do know that gammagloulin works....but I will always be searhcing

for more answers....I want my children to know what they can expect

when they have babies...will their babies have CVID?

Terri Cerda (mom, both daughter CVIDers)

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