Wow I am sorry. I must say I was seeing a doc outside of my insurance for a couple of years, an infectious disease doc. I kept going to him because he would try pretty much anything that I asked him too. BUT then he started telling me it was impossible for us to get autoimmune which is hogwash because we are more prone to them. He also refused subq saying the risk of skin infection was too great and it was unproven. You should see rheumatology for pain though.

Im here to tell you it is NOT. My levels have doubled since being on it. I would seek out an immunologist if you can. Contact Primaryimmune.org and they can assist you with finding a doc. Good luck.

I think Kelli is right ... you should try to find an immunologist who has experience treating people with primary immune disorders. My internist is a brilliant doctor, and I will continue to see him ... but he doesn't know alot about CVID ... however, he has been learning. But, as an advocate for your own health, you should really see someone who knows EVERYTHING ... and that would be an immunologist. We should all be proactive in our healthcare (by seeing an immunologist) rather than reactive (seeing someone only when we're sick - or seeing the wrong kind of doctor). Best of luck to you!!

Thanks so much kelli and MiMidge. I was googling Immunologists in my area and the only ones I seem to see are Allergy and Immunology specialists/doctors. Is that the same thing? I guess I never realized that there was a relationship between Allergy and Immunology?

Thats all there are in my area too. I have Kaiser. We have 2 in my entire county lol I had to go to LA and still saw an allergist/immunologist.

from what i have seen it is allergy immune togehter i did find an ent that claimed to be an immunolgist.... just remember some allergic/immun doc thinks EVERYTHING is allergy related including cvid... my experience was not great with 2 different allergist/immun they tend to not see the whole pix (the ones i saw) i am sure there are good ones out there, but watch it if you go in and they claim to have a cure for cvid it is all allergy related i would rethink the doc....

from personal experience i have not had good luck with 2 of the allergist/immune doc i saw that is why i finally decided to stick with my hemo/onoco and find an internist that would work with him.

what i did when i was looking for a new doc was i made an appt talked to him/her (one was female one was male the female had trained and worked under a well known one in our area and was in practice with him..i couldnt get in to see him he was not taking new patients) after seeing her a few times i decided she wanted to view EVERYTHING from an allergy point and with cvid i am not convinced it is all allergies i think they play a part..but she had too many absolutes and i have found docs that deal with absolutes with the immune system are ones i stay clear of.... the other one claimed to be the end all of cvid experts...when me and the boys(both nephews were having seasonal allergies at the time which was causing me to get sick so took the boys to see him thinking if he could get them well i could get well) when i have cvid and the boys dont and we were leaving the office each visit with a sackful of allergy meds and when i say a sackful i mean he would place us on 4-5 different allergy meds everytime we went in his theory was it was an allergic reaction that needed to be shut down...needless to say i was still sick and the boys were hyped up on allergy meds with no change....

it is like any doc make sure their first belief is the belief to use common sense and add their medical knowledge to the mix.... i found i had to make appts give them a chance and see what they were able to do trial and error....

Most allergy/immunologists are more specifically allergists ... dealing with allergies, shots, maybe asthma, etc. Not ALL of them have much (if any) experience with immunology - more specifically PIDD. You need to contact these docs and find out just how many patients they treat who have PIDD. You need to find out what their background is as it relates to primary immune dificiency. We have an allergy/immunology doc here in town ... who I went to when I was at the end of my rope with infections and sickness (prior to my being diagnosed with CVID just 8 months later) ... and he did not come to any realistic conclusions as to what I was suffering from. NOT EVEN CLOSE!! As a result, I do not consider him to know much about anything whatsoever. But, that's another long story.

Do your research ... make some calls ... if I may ask, what part of the country do you live in?

Thanks, great advice. I live in Atlanta, Georgia. Being a major metropolitian area, we do have plenty of good docs.....it's just finding the right one!

try doing what MiMid did call your specialty pharm and see who has lots of Ig shipments in your area, that way you know they have lots of cvid patients....

I saw an allergist who told me that I am "not sick enough" for treatment. I contacted www.primaryimmune.org and they emailed me a list of Immunologists in my area. I will be seeing him on Thurs. to get more insight. It's too bad that most drs. don't know anything about CVID. My PCP and gastro rds. just shrugged off the fact that I have a dx of CVID.

Dear Tammy
I have been diagnosed since 1990. I had an internist who consulted with the immunologist at IDF-Immune Deficieny Foundation. It is the primary immune website that others are talking about. I finaly got referred to an hematologist who is interested in pidd who is at our medical center. First of all subq has been around for a long time. I heard about it for 10 years because Europe had it first. About 4 years ago I went on a study of the new suq Hizentra. It keeps your levels steady. I have not been sick for 4 years!!! So try a major medical center in your area. I would say your doctor is way behind the times. Change doctors! Marianne

I've been wondering the same thing....if I should be seeing an immunologist. I found a practice that has three docs in it and one of their bios says he is specifically interested in PIDD's. I emailed them to ask if he has CVID patients. I'm waiting for an answer.

Most doctors will balk the moment your lips even start to form the words: holistic, vitamin, supplement, homeopathic, alternative, acupuncture...if they even bother to comment at all. I told my doctor about trying acupuncture for enlarged spleen and he told me about how he worked in China for several years in a hospital where they (not him) also used the traditional acupuncture methods and he never saw any spleen shrunk by it. He's a possibility killer, but I love him.

I worked with an ID med doctor for the first 18 months or so after I was diagnosed with hypogammaglobulinemia. He was the one who thought that IVIG would reset my immunity and that one dose should last up to three months. He also did not seem to understand about the general side effects people have from IVIG. Both my pulmonary doctor and gastro doc completely ignore PI as having any impact whatsoever, although they treat the side effects. An immunologist is a good choice although it seems a lot of them do not know much about CVID, either.

As unusual as it may seem ... you should check with pediatric immunologists too. Don't let the 'peds' part scare you away. A good many PIDD patients are children, and there are immunologists who are pediatric doctors but will see adults.

If you call the immune deficiency foundation, they keep a list of physician who treat a population of patients with primary immune diseases. The will give you names and contact information of specialists in your area. Mentioning that you got their name from the IDF never hurts. It is a relationship that usually is important to them.

www.primaryimmune.org

Immune Deficiency Foundation 40 West Chesapeake Avenue,
Suite 308 Towson, Maryland 21204 2008 IDF 1-800-296-4433