Checking your T & B cells probably wouldn't do you any good - it wont "guarantee" you will or won't get something. So some of us still get sick alot, some of us got lucky and got a lung disease, some have massive GI issues, etc. That is the "variable" in Common Variable Immune Deficiency - it REALLY varies from one person to the other. Try not to worry, it sounds like you and your doc are doing all you can do ((hugs))

@Pcon----Aaaaaa thats funny, yeah I bet they were drooling to get at your blood. Wow, what are the chances of allmost everybody in the family having it, what a drag. But I know your kids are highly accomplished and it doesn't seem to get in their way. That's great.

@Elizza, o.k. now I know what to ask for. Problem is I am now with a hematologist, and really I dont think he is that knowledgable. And honestly, I dont get sick anymore, (I have been on IVIG for 15 years), so I guess if it aint broke, dont fix it. But it would be interesting to know more, I just dont want to burden my doctor, cuz I know it would be a hassle for him, he really is dealing with a lot of sick cancer patients, I almost feel guilty costing the state my medicare/medical to recieve IVIG, and I really never get sick, but like I posted on another discussion (I think it was one of the newly diagnosed, who was having a well-deserved meltdown (God knows i have had plenty of those) she was just sick and tired of infusions, needle sticks and all of the rest of the crap that goes along with it. I quit IVIG for about a year, (no insurance) and I almost died from Sepsis, doctor told my husband to have the family come to the hospital. So I relayed that point to her, when and if ANYBODY thinks they can quit IVIG because they are sick and tired of being sick and tired, and they are feeling "WELL" it is a deceiving disease, infection can creep up into you and kill you in a couple of days, easily. Soooooooo I make myself get infusions.

@Stimpy, ha! Dont ever feel guilty you are costing the 'state' anything when it comes for IVIG, being sick costs ALOT MORE!!!! Stay well my friend, IVIG is a small price to pay, keep enjoying life...
Also all is true about testing being unnecessary if it does not change the treatment, that is true in every illness in medicine... I didn't suggest to ask for the test, but to ask your doctor for the results of the specific tests done to you at the time of diagnosis, you never know, it may be that it was done to you... for any given reasons... including research....

@Elizza: Thanks for the affirmation, I know that is true, and I know it is keeping me healthy. Sometimes my pea-brain says "well maybe I'm cured!" but I know it never will be, so healthy as I am I still get the treatments........It took a good couple of years, that's why I always tell newbies when they are first diagnosed, that it takes TIME, and not to give up, you will eventually feel mucho better.

I am glad that you are doing so well after having been treated for 15 years! You are probably feeling so healthy because of getting the IVIG for the past 15 years. I don't know your age at the time of your diagnosis but I was 54 so I already had lung damage (bronchiectasis) and was a very sick girl at the time! It has been a long 4 1/2 years and now I am better but lately I seem to be getting sick fairly easy again in spite of immunoglobulins. I just switched from IVIG once a month to SCIG twice a week to see if it will help with the side effects and to give me better protection against lung infections. I just did two rounds of two different antibiotics over the past two weeks and I still have a little junk in my lungs. It seems it gets more and more resistant. My pulmo did suggest I get the flu vaccine even though we know it doesn't work. He also said to get the pneumovax this year. (why?) He seems to think that if there's a chance of ANY added protection then it's worth it. I know we can't have live vaccines. I recieved vaccines as a baby and contracted both Polio and Whooping cough as a baby! I guess they should have known then that something was wrong! I guess back then (1950's) they just didn't know much about it! If anything! What a facinating condition but what a pain in the gluteus maximus!!!! (butt) LOL I have never heard of Dr. Charlotte Cunningham-Rundles before. Does she have a lot of good information out there? Where is she located?

Hi Vivian: Yes, I too am 55 years old. I was diagnosed in 1994, after being healthy my whole entire life, never a problem, let alone lungs, sinues, breathing. So it was definitely a mystery. I was born and raised in Calif. but moved to Omaha, NE, in 1989. Thats when the trouble began, I went about 2-1/2 years just being chronically ill, with sinus infection, ear infection, eyes, throat, pneumonia, once I was treated with antibiotics, back came another infection. After seeing a multitude of doctors, PC, ENTS, they finally sent me to an allergy/immunologist who wanted to test me for AIDS, I was dumbfounded, NO WAY did I have AIDS, but I did what she told me to do, and THATS how she discovered CVIDS, she immediately put me on IVIG and within 3 months I felt like a new person. I am SO SORRY that you had to go so long without a diagnosis, but honestly, I dont think they knew what to look for in the 50's, 60's, 70's 80's, etc. I know there are other people on here that suffer from bronchioecstasis. Not fun. There is a top notch specialist that practices in New York, her name is Dr. Charlotte Cunningham-Rundles, I have heard people talk about her on this website. I have no idea how you could get in touch with her if you wanted to, but there are a few people of this site that have done a lot of digging and research, Everybody is different, we all have CVIDS, some with more damage, more symptons, some of who have GI issures, joint and muscle tenderness and pain, all related to CVIDS, I even meant a kid once that was swimming in a pond and he got Giaguardia, which resulted in his failure to thrive, he was extremely small, from a parasite he picked up in the pond, so he too, was put on IVIG. I have read so many stories on this website, it's interesting too know what other people have gone through and how they were diagnosed, and the steps they are still taking to be treated. When I was first diagnosed, THERE WAS NO ONE to talk to. People just looked at you like you were making something up, or you were crazy. Anyways nice to talk to you. Hope you are doing well, Give me a shout out if your are feeling lousy or have any questions that maybe I can answer, but really I think everybody is right, all you can do is get your IGG replacement, and treat the symptoms with inhalers or whatever the doctor advises. Bye