I have wondered about this myself and have planned to check with my doctor. My gut instincts tell me that it is a bad idea. Before I was diagnosed I had a flu shot and it just about killed me. I wouldn't want to tell you what to do, but be sure to check with your doctor before taking the risk.

Oh yeah, I put in a call to my immunologist today, and in the past I have always gotten the regular flu shot, absolutely no problem. But when I asked her, she said no, not to get the swine flu shot, because we do not produce any antibodies to it anyway, but she said if I want to go ahead and get the regular flu shot, that it might help a little bit. She also told me if I do get sick, that they would treat it with antivirals, but she said to ABSOLUTELY NOT use those nose sprays that have an active virus in it . Did you watch the new Dr. Oz show, and how he is preparing everybody for what could be (not saying it is) flu pandemic. Just all the supplies you should have in your house, and to WASH YOUR HANDS ALL THE TIME AND DON'T TOUCH YOUR FACE. KEEP EVERYTHING CLEAN. I plan to stay out of the major public places, movie theaters, restaurants, places where there are alot of people, espcially hospitals! Don't want to sound paranoid or neurotic, but I need to have a plan to stay healthy. Hope everybody is doing the same!

I've always been a bit of a germaphobe, and since I got diagnosed I've been even more so. I've been afraid to go out in public unless it's absolutely necessary, and then I do so with a surgical mask.

I'm hoping that things will change once I start the IVIG treatments and get my immunoglobulin up to a reasonable level.

get them all a little helps more than nothing. my docs said it was very important to get all and i agree. i got both and still got the flu twice this yr, but i think it would have been much worse had i not gotten the the flu shots. just remember dont get the mist or live virus. get the one they have manufactured.

I'm thinking there must be subtle differences in each case of CVID. It's really just the name for many versions of antibody deficiencies. My immunologist told me to stay away from all the shots. It could be because I have no IgA, or it could be that when she did the initial tests and gave me a pneumonia shot that she saw something in my reaction that indicated I shouldn't get other immunizations, but she was pretty firm about not getting the shots. On the other hand, she said that people around me should have them so they would be less likely to share a bug with me.

Buddamind,
My advice is to consider finding a new Doc. It's apparent she doesn't see a large population of PIDD patients. The consensus is that you will react to some of the vaccines, for example I reacted to Tetanus but not to mumps, Hepatitis etc. The vaccine you don't react to will do no harm. I've never heard that low or no IgA changes the equation

I have none of the ig's iga, igg, ig whatever, so i don't get anymore immunozation shots, if your body doesn't make any antibodies to it, why bother. Everbody's cvids is like in shades of grey, I could probably go years without gammy and not get seriously ill. I get gammy once a month now, and i am very lucky, i dont get side effects, nothing. but there are sometimes i am very mentally fatigued, but i am assuming this is psychological. Do you think being tired is a side effect to this disorder, or probably psychological?

I think being tired is definitely part of this disorder, that has been a huge factor with me too. I've also seen it listed as a symptom on some websites, although most of them seem to get caught up in talking about the big symptoms and lose sight of things like exhaustion. Here's one site that mentions it: http://www.associatedcontent.com/article/298651/common_variable_immune_deficiency_cvid_pg2.html?cat=25

my doc summed it up for me, he said many cvid people feel like they have the flu most days.... it was like a ding ding ding.... before being dx, i keep telling everyone that it felt like i had the flu most everyday..... that is how both my daughter and i feel. so if you feel like you have the flu everyday, it stands to reason that you would feel exhausted....... so i think based on personal experience that exhaustion is a symptom of cvid for me.

Thanks PB - interesting site I always thought it was the Iga being replaced but I just learned it is only the IGg. I guess i can blame my fatigue on the cvids!! LOL In my mind thats what I do.

Fatigue is a HUGE problem for some CVID patients. I am one of those. Same with the flu thing. When I over do my schedule or experience any extra stress, I am crippled with flu symptoms and more.

These are the things, besides the infections, that really affect my life. I worked 4 days this week and yesterday made a trip to the grocery store. I knew it was too much for me but I ignored my inner voice and today I am ruined. Zero energy, feeling miserable. I had to cancel some great plans for the day to stay in bed. My family is mad because I can't just 'get it together'.

It is just so hard for others to understand how fast we can bottom out. I am usually pretty good about stopping when I feel overwhelmed, but sometimes it is not possible. Those are the times I end up in ER.

The flu shot... my immunologist said yes to the shot, absolutely NO to the nose spray one. I chose to do neither and did not get the flu.

Fezzyweg, I read your posts and I cannot believe you ARE NOT ON DISABILITY!!!!! First of all with all the infections, the ER trips, the hospitalizations you have had the chronic fatigue I CANNOT BELIEVE THAT YOU ACTUALLY GET UP AND GO TO WORK!!!!! God I would be a complete wreck. You really need to be on SS disability. Can you apply and get your doctors to write you a referral? I am on SSI because of a MENTAL DIAGNOSIS which stemmed from losing every job I had, because I was so tired all the time. I couldn't cope. I got fired from every job I had since my diagnosis and my divorce. I REALLY BELIEVE YOU ARE A CANIDATE FOR SOCIAL SECURITY DISABILITY. It was a long process for me, and a humiliating one, because I had to present myself as a suicidal hopeless person, (which I was) I was sick and tired of being sick and not being able to take care of myself. Not to throw into the mix my husband divorced me and not having enough compassion to just let us be separated and keep me on his EXCELLENT FULL COVERAGE PPO so I could get my infusions thru home health. You are a very sick woman, you need rest and recooperation. I guess in a way you are lucky that your job hasn't fired you from missing so much work. You probably have a decent company. I always worked those type of jobs if you didn't punch in at the right time, and if you missed 1 day WITHOUT A DOCTORS NOTE!! you would get fired. Try to even get to a doctor when you are in the throes of the worst flu symptoms in the world and you are in fear of losing your job, cannot pay the rent and you are out on the streets, that would make ANYBODY BE SUICIDAL. Any I guess I am just angry for you that you have to be sick so much of the time and nobody is giving you the help you need. I admire your strength, to be on your own and nobody to even drive you to the ER, you are a strong woman, I just hope your future gets better and you get the rest you need. You will be in my thoughts and prayers. Stimpy

Fezzywig, thank you for your post. I really relate to the notion of how fast we bottom out. It may be hard for others to understand, but I've had quite a time with it myself! I've been diagnosed/treated for about six months and outside of the fact that I haven't been "down hard" sick in six months, in a lot of ways I feel like I've gotten worse. I get a lot of ups and downs and can no longer tell what's going to happen next. For years I could read my body's messages, now I don't have a clue. And the up and down energy levels are just bizarre! In any case, I appreciate your post, and I didn't get the flu shot, or the flu this year either (so far!). Thanks!