I was just diagnosed with CVID and asthma three days ago. All my levels (IgG, IgM, and IgA) were non-existant on initial labwork done by my GI (I've been seeing him for 2 years for GI problems) who then referred me to an Immunologist. I'm still figuring it all out. The Immunologist is retesting my levels, but wants to start me on IVIG treatment ASAP. I've been sick and tired for some years now with recurrent respiratory infections, GI problems, etc. I have 2 kids (7 and 3 years) and worked full time until about 4 months ago. I now work part time. I used to think I was always tired mostly due to being a full time career mom, but nothing seemed to change in how I physically felt even after taking a break from work.

They are doing a lot of tests on me now for other possible disorders, problems, etc.
I'm scared. I keep telling myself that I'm know I'm going to live, and it's just something I now have to deal with and need to get over these feelings. None of my family seems to understand how serious I'm thinking this is since this is not a disease that most people have to deal with. Maybe I'm overinflating the severity??? I feel so alone right now. Any advice and/or insight would be helpful and appreciated.

Misha,

I was diagnosed with CVID 1 week ago. My levels aren't as bad as yours but my feelins of fear and anxiety are the same. I'm a mom to a 9 month old and just like you I always blamed my tiredness and run down feeling on being a new mom to a very energetic baby. I currently work full-time. I've always been sick with upper respiratory infections but have just recently started have stomach problems. I've had my current sinus/upper respiratory infection since Thanksgiving. I'm having all the tests run and will start IVIG treatment as soon as all the test results are in.

I don't have much advice but I know how you feel about others not understanding your fears. I've started searching the internet for all the info I can find and I've found that a lot of people are living full lives with CVID. I hope the IVIG treatments make a world of difference for you.



Diagnosed with CVID 2/3/06

It somehow feels better knowing others are going through what you are. Another day and a little more info and I'm starting to come more to grips with things and a more positive attitude as well. I start IVIG Monday and am hoping it starts to make me feel better soon.

I have gotten some great advice from some of the other discussion forums on other sites. There seems to big a consensus that drinking lots of water a couple of days before treatment helps with side effects such as headaches and fatigue, but some people never experience these either and say they feel much better once the treatments are in their systems.

Hopefully your test results and treatment come soon so that you can finally rid yourself of the infection and on the road to feeling better.

I have also been newly diagnosed and am going for my first IVIG soon. My diagnosis has been very upsetting for me also. It seems that no one has any firm knowledge on what the expected outcome of this illness really is. My family and friends don't really understand what I am going through because they don't realize the effects that the illness can have on you. I was wondering if you could give me the names of the other websites and chat rooms that you visited. It would also be great if you would be willing to share information with me as you go along with your treatments. I have been having GI problems for many years but it is the past year of severe sinus infections which led to my diagnosis. Was your IVIG treatment painful, as I have heard some are? How long did it actually take? Were you able to go about your daily business after the treatment? I'm sorry if this is too many questions for you, then I will understand. Anything you can offer is greatly appreciated. With kindest regards Susan

Hi All, I have been getting ivig treatments for over a year now. I do not get sick as much. When I do get sick I can recover faster. It has made life better. Getting ivig is not painfull. The needle stick is the worst part. Make sure you tell the nurse if you start feeling strange or dizzy. I take books and headphones because it is so boring. It takes me 3 hours. I have gone to work after treatment.But most of the time I go home and get things done at home. I do have my sad sit and cry moments. But for the most part I try to stay positive. Good Luck To All

I have been on ivig for 2 years and i still have horrible headaches, i have been on prednisone for 4 days after to helpbut i still get them. My son has been on them for a year and he also gets the headaches and nausea and vomiting. It has lessened since he has been prescribed prednisone. I am just happy that the sq Igg has been fda approved. We are going to take a break from the infusions over the summer and hopefully start on sq because it is suppose to be alot less side effects. I did well for a while with the diagnosis then all of a sudden all my levels bottomed, that is when i was placed on IVIG. It has been a hard year but I am starting to feel some better. I have been out of work for 5 months and will start back this week. It is ups and downs, just take care of yourself and say no when your gut feeling tells u to. It has taken me a year to get used to the idea that I cannot do everything I used to do. I had two jobs,and a family and doing ok with both. NOw it is alot harder. But when i take care of myself it is a lot better. go to www.primaryimmune.org they have alot of information. Try and stay positive and know u are not alone. If u want to email please feel free to. rhondamommy1@aol.com.
G-d bless,
Rhonda