HELLO.MY DAUTHER LEZA IS 17 NOW, SHE WAS DIAGNOSED CVID LAST YEAR,SHE HAD SIX PNEMONIAS FOR FEW YEARS,BRONHITAS AND SINUS INFECTION,SHE JUST START IVIG TRATMENT.WE BOTH FEEL FRASTRETED AND NOT SURE CONFIDENT IS IT RIGTH TREATMENT OR NOT,BECAUSE IVIG,DOESN,T TREAR THE REAZON,IT,S JUST ARESING IGG LEVEL.WHAT ARE EXACTLY SIDE EFFECTS OF IVIG TREATMENT.IS IT POSSIBLE REALLY TO CATCH AIDS OR HEPATIT VIRUS,OR TO HAVE ANY OTHER PROBLEM AFTER LONG TREATMENT.?DOCTORS ARE NOT EXPLAINING US SO MUSH.ALSO,I,M LOOKING FOR ALTERNATIVE MEDICINE,ANYBODY WHO IS ABLE TO HELP ME PLEASE REPLAY.THANK YOU VERY MUSH FOR ALL OF YOU.

Hi,
I am 36 years old and have been living with CVID for 10 years and I still have the same questions in my mind that you are asking right now. It is very frustrating to be sick for so long and finally get diagnosed only to find out that it is kind of a bummer (the treatments). But you know what, not being ill is worth it. I have been healthy for a while now, I hardly get colds or flus, bronchidis, or phemonia and I can live with that. Listen to the doctors but ask a lot of questions, I still do and I am still looking for alternatives but until I find one that works for me, Im sticking to this one. Good Luck

I live in UK and have been diagnosed with CVID for over 25 years-I am now 36 years old.
In that time treatment has changed. I had injection into buttock that was weekly and painful for over 10 years. Then infusions by IV for next ten yearsand now subcutaneuos infusions once a week (under skin-into stomach). They all had there pluses and minuses. You could have got Hepititus before it was all screend properly - now blood is screened before it is used for blood products. By happy accident- gammaglobulin that we recieve is heat treated and so The AIDS virus was always killed beforewe knew it existed in blood products. Unlike some of our less fortunate friends with hemaphillia.

I also have loads of antibiotics due tolung disease and find that alternative therapies are best for treating side effects of antibiotic treament. i.e thush can be helped with yoghurt and accidopolis(spelling?) Vitamin C helps with colds. Aromatherapy helps with stress and some massage with my lungs. But I would always take the medicine as well.
Nothing can booost a weak immune system from pills and claims to that effect are dangerous. Some things can work along side of the medicine. Certainly anything that helps stress is goodbecause stress makes even a well person vulnerable to infection.

Its hard having a chronic illness and you need to live life as best you can. I agree to last answer to this question. Stick with this. But keep an open mind and look out for best medical practice. Questions are good. Keep asking them.

Goodluck

Anne-marie

Hello, My name is Christina and I live the USA and just found out a little over a year age that my twin daughters have CVID. How did you learn to live with it? I am so afraid for my girls. I am also afriad of losing them. They have had ports put in and take IVIG's every 21 days. They are fixing to be seven years old May 11 and weigh around 30 pounds and have never gotten over that. They don't feel good most of the time. I try to be honest with tem about this. But how can I expect them to understand and be patient with the process when I can't do that myself? They live in total isolation right now. They don't go to school, they can't go to church. They are getting old enough to realize that this is not normal. I worry about them mentally and what this has done to them. One of them has asked me before "If I could just go be with Jesus I would not have to hurt anymore and this would be all over." And as a parent that is hard to take. I just don't know what to do. Sometimes I feel like just going to sleep and forgetting to wake up because tommarrow may to be to hard to handle. I keep waiting for this nightmare to be over and then I was told it never will be. Thank You Mommy of twins

DEAR CHRISTINA
I HAVE A LITTLE GIRL WELL SHE IS 14 NOW AND HAS TO SEE DOCTORS WHEN SHE WAS 13MONTHS AT THAT TIME I WAS TOLD SHE HAS EVANS SYNDROME WE DEAL WITH THAT AND AT AGE 11 SHE GOT SICK AND WE WERE TOLD SHE HAS CVID TO SHE HAS BEEN GETTING IVIG EVERY 3 WEEKS SHE KEEPS LOW PLATELETTS AROUND 99 TO 100 CAN DROP LOWER BUT I HAVE HER IN SCHOOL AND ALWAYS HAVE SHE DOES GOOD WE TAKE HER OUT WHEN WE NEED TO AND IT WORKS IS THERE A REASON YOU DONT LET THEM GO TO SCHOOL OR CHURCH?

DEAR CHRISTINA
MY NAME IS IRIS AND IīM 29 YEARS OLD.I WAS DIAGNOSED CVID 3 YEARS AGO.
AT THE FIRST MOMENT IT IS HART TO ACCEPT THAT YOU ARE AN ILL PERSON, BUT I THINK THAT IS THE REAL PROBLEM OF CVID.
IF YOU ARE TREATED WITH IVIG REGULARLY YOU CAN LIVE A COMPLETE AND HAPPY LIFE WITHOUT EVEN NOTICING SOMETHING IS WRONG. YOU JUST HAVE TO ASUME THAT YOU NEED THAT TREATMENT (AND MAYBE IN A FEW YEARS GENE THERAPY WILL SOLVE OUR PROBLEM)JUST LIKE YOU NEED TO EAT OR SLEEP, BUT NOTHING IS WRONG WITH THAT.
SO IF THERE IS NO OTHER PROBLEM, PLEASE DONīT MAKE YOU LITTLE GIRLS FEEL BAD ABOUT THEIR CONDITION, DIFFERENT OR ILL THEY CAN DO EVERITHING THEY WANT IF THEY HAVE REALLY JUST CVID.
HERE IS A GOOD LINK THAT MAY HELP YOU A LOT

[www.primaryimmune.org]

I am 29 and have just been diagnosed with CVID after suffering from constant Chest, throat and sinus infections. I have only just had my third treatment with Flebogamma.

2 weeks ago I had a chest, throat and sinus infection and a high temperature, my G.P. was very reluctant in giving me antibiotics, but in the end did. My G.P. doesn't seem to know anything about this condition. I had read in the Primary Immune Deficiency Handbook that if i had a break-through infection that i should get antibiotics as soon as possible. I am looking some advice about this and how do i make my G.P. more aware of my condition and the treatment for it.

I am 43 and only diagnosed with CVID last october. I have not had the "normal" severe respiratory infections that so often call attention to CVID. I just kept questioning my lab work and my doctor eventually ran tests that determined the diagnosis. You need to see a different doctor if they are not willing to give you antibiotics when you present with an infection. Clearly antibiotics can be over used, but in our case, it is essential that you are treated aggressively from the beginning. Are you seeing an Immunologist? I went to National Jewish in Denver and saw Dr. Jack Routes. It is an amazing facility. I am sure a specialist can help you find a good primary doctor. I have traveled extensively in third world countries and my doctor is amazed that I have not contracted anything. IVIG isn't fun, but if it keeps you healthy it is worth it. I feel fortunate to have good insurance. Good luck to you.

I to feel fortunate to actually have a diagnosis. I have done very well since I started the IVIG.
Good Luck