Every time I see a doc :) then you get the rare few who "think" they know because they "heard" of it in med school

oh yes--have had that experience and still do----
welcome to the group. You will get lots of help here. I am pretty new to the club here as well, and it is sure nice to be able to come here and read, or vent, or ask questions. Everyone here is so understanding and helpful.
Hope you are doing ok

more often than not no one will have ever heard of CVID. It can be really frustrating especially when you end up in the ER and they treat you like a normal person when we just aren't the same! When i had meningitis i had four neurologists come in to talk to me because they had never met someone with CVID and were super excited to finally see a case in person haha. I have had one ER doctor who had a very good understanding of what it was, but he even still asked me what antibiotics etc would work best for me because we are so unique. It is even really hard for family member and friends to understand what it is. I still have my best friends asking me when CVID is going to get better and go away.

Oh yes! Definitely, especially family. I have been ill for the past 6 weeks. I have not worked, and I find myself frequently at the doctor! In the past two months, I have had to deal with phebitis and a new brain tumor (benign - not as scary as it sounds) in addition to my CVID. I had no strength but I am getting better. Last week, I was having huge headaches. I ended up in a nasty fight with my parents, who want to know, among other things, why I wasn't working because I didn't look sick. It is emotionally exhausting.

Oh yeah...been there. My primary doc has gone a long way to read and learn about the condition to help me best. When I go in and see her she just purses her lips and calls me 'special' in a loving way--we have an understanding and she's supportive. HOWEVER when one of her nurses asked me about my condition and I told her about my treatment, she began to coach me on what it was do give a subq injection, and how I was doing it wrong (can't do it wrong, there are little butterfly flaps on the needles). She kept telling me that I had to do it at an angle, etc. If I'd been newer at treatment, I would have thought for a second that maybe my immuno doc, his nurse, my training nurse AND my nurse advocate were wrong...but, I knew they weren't! I just had to let her go on and she soon gave up and left me alone.

Been there! Happens nearly every time I see an urgent care doc. Nurses? Fuhgedabowdit.

Short of my Immunologist and the folks at Coram, not a single doctor, nurse, assistant or tech knew what CVID was and I've seen a lot of them in the past 3 years. My PCP had to read up on it, but now he has another CVID patient and seems to be knowledgeable of and responsive to my condition.

When I first started learning about CVID I read several times to be careful about saying you have an "Immune Deficiency" because people immediately think of AIDS. I normally say I have a condition called "CVID", which is a weak immune system, and that my body cannot fight off bacterial infections as well as the average person can. If they're really interest they can Google CVID and find out more about the condition.

the only one i've come in contact with that knew what CVID is, is my immunologist & my oldest sisters, who's an RN & a bunch of other letters after her name!
and like churinl mentioned, its emotionally exhausting. i tried to explain to friends~one say eat more protein, another says you ned complex carbs, get out & exercise more, push yourself ~ at least since i found this board, i feel like its not all in my head. i've even sent friends & family links with information about the condition~so far i think only a few of them have read up on it, but aren't comprehending it, like me, they aren't used to me not being able to do it all all the time..
i was diagnosed in april i had this, i thought it was another shingles outbreak~ and i'm still having trouble getting my head around it. hang in there, this community is great, lots of people with great advice.

Thats why I think we should all wear medical alert bracelets and always have a printed up explanation of the disease on us at all times. So health care people take it serious and then you can whip out the explanation of what it is, then maybe they will take you more seriously.

Welcome to the list. Everyone here is wonderful and you are truly not alone.

Only two of the doctors I have seen have even had a clue about CVID: my new hematologist at USC Medical School and beloved Dr. Church, my immunologist at Children's Hospital. They know it because they treat it. Nobody else so far has had a clue.

I am not sure what is worse: somebody who knows nothing about CVID or somebody who thinks they do because they heard about it 20 years ago in a medical school lecture. :-)

I think my favorite response was from my first GI doc, who told me that CVID was a theory or at best a trashcan disease and that I should ignore it.

Wow Tina - that is wild! I have a doctor who said virtually the same thing about my CVID and my brain tumor last week - and told me that my problems were in my "head" (not physically, but psychologically). Didn't bother me though. He does well at treating me for what I see him for, and I have other doctors who address the other problems. Nevertheless, it does kind of stink when people sort of infer that there is nothing physically wrong with you despite evidence to the contrary!

It can be extremely frustrating. After I was diagnosed with CVID, every time I went to my primary doctor for anything, she was afraid to treat me and was always unsure about my condition. She would just end up sending me to my specialist for treatment. I finally just talked to my specialist and he agreed to become my primary as well to keep me from having to pay another doctor to send me to him in the end anyway. It is a lot easier that way because he knows all about me, my condition and how my body responds to different antibiotics when I need them.

Wow!! Based on this information, I must have been lucky to have had the allergist I have. She picked up on it immediately, knew the possible treatments, etc. Now my friends, not so much. I hope all of you are doing well at this point. So glad to have found the site and hope to be able to contribute helpfully as time goes on. :-)