After 10 years of being MIS-Diagnosed, living on antibiotics, 7 sinus surgeries and lungs that were almost gone....I was finally diagnosed NOT by the so called immunologist I had been seeing all this time but by a Rheumatologist, that was in 1994!
My first suggestion is find a really good doctor that is a true specialist! Go to AAAAI.org (American Academy of Allergy Asthma and Immunology). At the top left side, you will see "find a DOC". Click on that and then enter your city or zip code.
Then go directly to the box for speciality and choose Immune Defiency(sp) NOT Allergy/Immunology or Immunotherapy...that's allergy shots!
You would think living in Dallas,TX we would have lots.....but that's far from the truth!! Most...but not all still see a childs face on all immune disorders but CVID is just the opposite!
Next if you haven't already....contact the Immune Deficiency at 1-800-296-4433 and ask for Kathy Antilla. Tell her your story and she will get you in contact with a peer contact in your area.
We are here to answer question to the best of our ability and believe me just knowing you ARE NOT alone in this mess..will take a load of your shoulders!
Learn all you can about your illness!! Pubmed is a great source of articles written by some of the foremost researcher around the world! The immune system is the most complex part of our body but trust me if you do your homework...you will know when you are being jerked around by any doctor!
(I have fired more than one,because I knew more about my illness than he did!) One M.D. tried to tell me I was addicted to IgG..........what a goof-ball!!
Good luck and God bless.........