Hi Marilyn, I really feel for you. It's hard to deal with situations like that where it seems like the doctors are just jerking you around. I think most of us have had that happen on the road to a diagnosis. At least your doctor is admitting that he doesn't know everything, and cares enough to ask others for help. My doctor did the same type of thing, but it's comforting that she will ask for help and admit when she's wrong. I hope that you get the answers and treatment that you need soon. :)

Why don't you see the "best in the country" and dispense with the middleman.
I believe many of the serious problems CVID patients encounter can be attributed to physicians who have little or not experience with CVID patients trying to "learn on the job." The IDF can give you advice on where to find a physician who treats a large PIDD population.
Were it me and I was thinking I might have a life long complex medical issue, I'd travel as far and wide as necessary to get to an expert. Followup treatment can be accomplished with a physician closer to home, but the diagnosis is crucial.

I too have a doc who is learning on the lob. What I remember from my testing BEFORE this doc was after blood work the "final" test was a pneumonia vaccine and tetanus vaccine (I'm not 100% sure about the last one) and if my body didn't show any after a certain amount of time, that was the final proof.

Agree that you should go to the doc he is referring you too. I have had 3 docs at Kaiser ignore my request for a referral to an immunologist but am still trying. Good luck.

I think I was too vague. My doctor is listed as an expert on the IDF website and he has atleast 5 people on IVIG and some on SubQ and he has given talks at the IDF conference. I have done the pneumonia shot and my body had a very weak response to it. Most everything point to IVIG but he is worried that my G levels may be too high for replacement therapy since everyone else he has diagnosed and treated with IVIG have levels in the 200-300's and mine are in the 500's. Lower than normal but not as low as most. He says the literature would say to treat with IVIG but his gut is telling him to do more research and he is going to consult with the other experts just to be sure he didn't miss something. I hate testing phases and just want a diagnosis and treatment.
The not knowing is what I have a hard time with, but I can handle treatment. I had come to terms with needing to have an infusion and that it would hopefully help me have more energy and fewer infections. Now it may be more complicated than just CVID. I have not been very sick to this point, the main reason he tested me was I have had two ear infections that ended in ruptured ear drums and the last infection started while I was on Levaquin for Bronchitis. I went to him for a routine allergy test to see if I could prevent some of the drainage and when I came back with no allergies he just did the test as a routine thing he does in these cases and did not expect the results he got.

so sorry it s so frustrating hang in there!

i would call him back and discuss your feelings with him. even if you do ivig, it will be a lower amount probably to raise your levels. my sons doc, and everyone says different things, wants his patients numbers about 700, where his other doc wants them about 600 in order to do ivig.