Hello! My mother has this and so does a sister of mine. It is possible that i have it as well. I was wondering if anyone else suffers with it and how much they could tell me about it. Also what meds they are given for it.
Emerald

Hi Emerald .... I also have a form of cvid ... To put it in very basic terms, the cvid patient's immune system is not capable of manufacturing antibodies in numbers that are sufficient to protect them from infections, especially the respiratory kind. It is a genetic condition although no one really knows how or why it occurs. I get biweekly treatments that essentially provide me with someone else's immune system :) - its called gammaglobulin - its a blood product that contains antibodies harvested from healthy donors and you can infuse it either by iv or subcutaneously, depending on where you live. Once a patient is established on this treatment they usually experience a dramatic improvement in health, although precautions to avoid infections are always necessary and we often need antiobiotics on a regular basis. Most patients - especially those diagnosed before they have serious lung damage - can expect to have an active, relatively 'normal' life with the proper treatment. I have the impression from your post that this is a fairly new diagnosis for your family? Is that correct?
Barb

Hi actually yes and no. My mother has had for a while now and even with IgG therapy has had pneumonia several times each year. Due to her malabsorbtion problems which they think maybe due to Celiac Disease she weighs 77 pounds currently. The last bout with pneumonia was caused by a type of fungus which the doctor at a hopsital in Nashville had seen only one or two cases per year. My sister also gets IgG therapy though she has had better results with it. She gets ill but not nearly as badly as my mother or I do. I do not get the treatments currently they see no need for them. My hope that perhaps for my mother there is more they could do. She is a hair over five feet tall and now down to skin and bones due to this mess. It was a long time before they diagnosed it. She has lost ground due to that and luckily has given up smoking though they recently put her on O2 full time. So too I was thinking that perhaps there is a genetic link for this disease. Since there is also the possibility that my son has it as well. I appreciate the post you wrote. I have been looking for others who suffer or know of this illness but there is not much in way of information about it. Do you know of any other sites that perhaps might have more to see?
Emerald

Hi -- I am sorry to hear how your mother is suffering with this. Sometimes it takes quite a while for patients to benefit from the ivig. I have been getting infusions for over 2 years and things are finally settling down for me. I still get lung infections and need to be hospitalized several times a year - but this is a huge improvement over before I was diagnosed. Hopefully for you and your sister the road will be easier - there is no doubt that the earlier treatment is started the better, but I would sill have hope that your mother will improve over time. I am not aware of other treatment options. Does your mother see a clinical immunologist? I wonder if her ivig dose is high enough or often enough. Many of us are on ivig every two or three weeks and it sometimes takes much larger doses to do the job. There is International Patient Organization for Primary Immune Deficiencies - you will find a list of countries with national organizations you can contact. If you are in the US, the Jeffrey Modell Foundation has real people who will talk to you on the phone and send you tons of information. I always feel that the more I know the better I can battle the 'enemy.' all the best
Barb