I've just been diagnosed with CVID. I am going for a second opinion at the Drs request but he has suggeted the monthly infusions. Reading this board it sounds like most people get much sicker then I do. I have always been prone to ear infections and chest colds. I was getting sick every other month for a day and more recently it has been every 3-4 weeks for 1-2 days. I wake up feeling like I am getting the flu, my chest feels really heavy, I feel fevery but dont' have a fever and all I want to do is sleep all day. It's not really horrible but it puts me out for 1-2 days and is more disrupting then anything since it happens so often. I've never been hospitalized and didn't even get anything worse or longer this winter.

I am weighing feeling sick one day a month with infusions one day a month and the treatment seems drastic considering I don't get so drastically sick. I think I'd rather be sick once a month.

But if I don't treat it, will it get worse in time? If I do treat it, will I be more energetic all the time? I have always needed alot of sleep and am miserable if I don't get an average of 9 hours a night but if I do I feel fine except during these once a month episodes. I am wondering if the treatment just means I won't get sick once a month or maybe if my needing so much sleep is related and I would then be more energetic without needing as much sleep?

I am 36 and was just recently diagnosed CVID in August 2006. I too was not as sick as most. My story is very similar to yours. My first hospitalization was August 2006 with strep pneumonia. That is when I first found out that I was CVID. If you don't treat it you will start to get sicker more often and the sicknesses will get more severer each time. In July of 2005 I had pneumonia. No big deal, took some antibiotics and was fine. But, I was continuously getting congested and my chest hurt and I was really tired all the time. Some days I would be fine but then really tired again. I truly did not realize how bad I actually felt till I started the treatments and was having more energy and feeling much better. When I was sick I didn't think I was that bad, but I was. And if I did not start my infusions my hospital visits would have gotten to be a regular thing and my sicknesses would have been more severer. I truly believe that you need to start now before you become a regular hospital patient.

One more thing. I have not been sick since September 2006. Not even a cold. And I have so much energy. I wouldn't stop for anything. I have a wonderful life now with my 2 kids thanks to IVIG. I stopped IVIG in February 2007 and started the SCIG (subcutaneous IG). I am very happy with it. Hope this helps.

Lolly,

If you can get the IVIG treatments take them. I was diagnosed with CVID in April 2007, in June they started the infusions and what do you know I'm allergic to gammaglobulin!!! My throat closed over, I was flushed out with saline and told, sorry, there is nothing we can do for you. I was getting one URI after another for over a year, put on antibiotics, go back to work, and TA,DA get yet another infection. I've been told it's environmental. If I could prove I work in a sick building I'd own the company, lol. I just got back from my PCMD and I'm yet another ZPAK. Years go at 2 companies I worked for I was exposed to hepatitis and all employees were give Gamma shots, when I had my son in 1981 I was Rh Negative and had to get Gamma shots again, and now I've built up an immunity. I'm not ready to die, I realize we all have to someday, but I'd like to live to see grandchildren.

I wish you well.
MaryAnn

My husband has CVID and he has chosen to not get his treatments. Please for the sake of your loved ones take the IVIG treatments. The longer you go without the sickness will keep coming and they will get worse. I am working very hard to get my husband back into his treatments. His Dr told him if he did not get back on them, he will not make it to his 4oth brithday. That is 3 1/2 years away. Those treatments will help you out greatly! Please take them.

See my above posting, under 'Somatrophin/Human Growth Hormone'! I have chosen to not take the treatments for the two PIDs that I have! I have survived thus far, after literally 100s of infections. I think plasma products are too risky!

The sooner you start on IVIG the better you are. Shelbie doesn't get nearly as sick as she used to. Her only problem was nausea and migraines from the gamma. Now she gets pre-meds...motrin and phenagran{sp?} now no more trouble. With CVID she has no immunity to common diseases...baby shots don't stay in your body. She has had 36 surgeries and we make sure she has IVIG right before and it helps her from getting infected. She would tell you herself, get the IVIG, you will see a difference.

The quick answer is YES. Over time, the infections will become much worse. In addition, you are more prone to catch meningitis. I got that, and was given last rights. Obviously I survived, but that made a believer out of me. I get infused every two weeks now, and NEVER miss.