Hi Deb,
There are three conditions that describe Primary Immune Deficiency Disorder:
1. significant measured deficiency in at least TWO antibodies: IgG, IgA, IgM, and I guess IgE, tho' I never hear about it. (There are other Immune Deficiencies or Dysregulations, but deficiency in two of the major antibodies is usually of prime importance.) So you need to start examining your antibody numbers.
2. Failure to mount an adequate level of immunity from the 21-23 strains of Pneumonia in the administered Pneumonia vaccine. You will be tested about a month later. I developed barely measurable immunity from 6 of the 21-23 strains of pneumonia in the vaccine. This test was administered twice.
3.A history of illnesses and hospitalizations from infections, viral, bacterial, fungal, etc. ;A history also of childhood allergies, eczema, etc.
As a general rule, you supply the data relative to your illnesses and hospitalization.
Until your antibody levels drop below the measured amount in the criteria for deficiency, and before you are tested for Pneumonia vaccine immunity, and present the required health history, you are in the 'watch and wait' level of treatment. You should, of course, track your illnesses, your treatments, etc.
I know it is hard to think you can't immediately have IVIG, when you are often ill. But if your illnesses can't be help by IVIG, that would be a waste. And for me each IVIG treatment (every four weeks) is billed at about $14,000. And that is just for the liquid in the IV bag. I am treated in a huge Duke University infusion center, with nurses, doctors (on call) gobs of expensive equipment, all taking up space in a large Medical Center. The entire cost every 4 weeks is billed at about $18,000-$20,000.
I'm glad you found us. I for one had no idea I had CVID, or PIDD. I didn't even know what it was. The thought of the complications of IVIG and possible side effects, added to the outrageous cost made me reluctant to aggressively pursue treatment. But another year of illness changed my mind.
Keep us posted on your journey.
Regards, Elaine