Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I got diagnosed with hypogammaglobulinanemia several months ago. I've had serious health problems for the past 5 years or so. This year I've had 10 sinus infections, several ear infections, bronchitis, thrush...it's gotten to the point that my blood work is so bad that the doctor says I really have to start IVIG. I am scared out of my mind. I have panic attacks and nightmares from when I had my thyroid removed in 2004. I was in a coma for 3 days due to a bad reaction to the anestheia. I am scared beyond belief about the idea of getting these treatments. On the other hand I've been so sick lately that I'm really scare about NOT getting them.
My question is: Are these things really going to help me? I had my thyroid removed, I had cysts removed from my sinuses, I've been on and off anti-depressants and anti-anxiety medicine. Nothing has helped for any length of time. Now the fatigue and muscle pain, besides the infections and the side effects from the antibiotics and steriods has all made me just about ready to give up. I don't want these super expensive, addictive treatments with lots of side effects unless it is really worth it. My husband and I have insurance, but I have lost my last 3 jobs because I was sick so much and the insurance doesn't pay for all of the cost of the treatments so, we are having to go into quite a bit of debt for me to start these treatments. I don't want to do this. My husband and I are already almost bankrupt from my medical bills. I was teacher and I've now been told I can never teach again, even with IVIG. Does anyone else have this stuff? How do you work? How do you pay for it? Did the IVIG really help? I know this sounds bad, but is your life really worth living?
If anyone can share any of their experience or ideas with me about this I would really appreciate it. My husband and I are clueless and scared. Everything on the internet just makes this sound like a slow death sentence.
My question is: Are these things really going to help me? I had my thyroid removed, I had cysts removed from my sinuses, I've been on and off anti-depressants and anti-anxiety medicine. Nothing has helped for any length of time. Now the fatigue and muscle pain, besides the infections and the side effects from the antibiotics and steriods has all made me just about ready to give up. I don't want these super expensive, addictive treatments with lots of side effects unless it is really worth it. My husband and I have insurance, but I have lost my last 3 jobs because I was sick so much and the insurance doesn't pay for all of the cost of the treatments so, we are having to go into quite a bit of debt for me to start these treatments. I don't want to do this. My husband and I are already almost bankrupt from my medical bills. I was teacher and I've now been told I can never teach again, even with IVIG. Does anyone else have this stuff? How do you work? How do you pay for it? Did the IVIG really help? I know this sounds bad, but is your life really worth living?
If anyone can share any of their experience or ideas with me about this I would really appreciate it. My husband and I are clueless and scared. Everything on the internet just makes this sound like a slow death sentence.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
How do I know? I have been receiving it for over 14 years. In that time I have only seen one person have a problem. And as soon as she started having a little trouble breathing and they stopped it, gave her some antihistimine and she was fine. She went home 2 hours later.
As far as does it help. I used to get back to back sinus infections. Now I get one or two a year. My overall feeling of well being is much improved. Also IVIG is not addictive. I would try it for 6 months as it takes a while to get full benefit. Then if it doesn't help you as you want then you can just not do it again.
The other name for the disease is Common Variable Immune Deficiency A.K.A. CVID. The variable part is that some people have very few sympptems and others, likeme, have an endless myriad of problems. I also have fibromialgia, addisons, Rheumatoid arthritis, infections, endless stomach problems and on, and on, and on.
If you have any questions that I might be able to help you with feel free to ask me. I have done extensive research on CVID and everything that goes with it.
Stay positive and NEVER give up.
Robbi
I have it and have been on IVIG since 1989, when finally diagnosed. I went for years misdiagnosed, having pneumonias and sinus infections before I was finally sent to the right doctors. Because of that, the damage had been done to my right lung, and I lost two-thirds of it. My sinuses have had surgery twice, and am better off but not perfect. I do get sinus infections but not very often. Like others, I also have a laundry list of other health problems--mitral valve prolapse,low blood sugar, fibro, osteoarthritis but hurt like rheumatoid, mild COPD, etc. A treatment every three weeks keeps me out of the hospital; I'm able to get it in my home by a home health nurse, certified to give such a treatment. The next day is recovery day, on which I cannot over do. If so, I feel crappy for about three days. I get it slow and at room temperature, so not to have side effects as in the past.
When you have this, you have to be careful around sick people or avoid being in their area; you also must not eat any raw seafood like oysters or sushi.
As far as insurance paying, Blue Cross Blue Shield does the best job in paying. I have fought other companies to pay, with the help of my hematologist.
No, every case is not the same; you are reading bad material. We may not live to be 90 but with the right treatment we still have many years; I am 52 now and happy to be here. Next March 2009, it will be 20 years that I have been on IVIG; without it I would not be here writing to you.
Anyway, they don't do mine at home because I am such a risk.
I take 20mg's of Prednisone prior and they give me 50mg's of IV benedryl prior too. Then it took 5.5 hours cuz they had to do it so slow so I would'nt react.
I am the sickest patient they have, meaning I have the lowest Igg, iga and whatever counts of all of the patients. I require the longest time due to my sensitivity.
Point. I think they can take care of you cuz they can take care of me.
I had 6 oral surgeries this year due to infections. I had 15 root canals cuz the roots all became infected.
On infection went near my brain and made my face change shape with a blister under my eye filled with fluid. This was all due to a dental infection.
I'm just saying I've been dealing with a lot of infections too.
Finally, I've been in bed everyday and I thought it was depression due to the lack of desire to get up, shower, eat and so on. Well, its this deficiency, not depression.
Today, I showered and stayed out of bed. WOW!
I drove myself to an appointment,
cooked dinner and am on the computer. That's a miracle.
Truly, I figured I didn't have that much time to live. I just didn't say anything to anyone.
Please do the treatment.
My counts just kept dropping and you don't want that to happen.
I know you are afraid and you are very ill. People here will support you.
NOTE: I was really sick from the ttreatment for several days. Then I started feeling better.
I felt like I had been piosoned.
Then those symptoms went away.
I can sit up today and that is a new ability.
Let us know how you do with treatment. I'd love to know.