Would like to encourage others with PID not to give up. There is still hope. First of all in the good Lord and second of all to good drs. that don't give up on finding out what is wrong with their patients. I was diagnosed a year ago. I take the gamma infusions. I had not been sick for over 8 months after starting the infusions. Then before christmas I became ill with chest congestion. I recovered over the illness in 3 weeks. This was truly a miracle for me. Never give up!

hi:
sir you are send the job

HI there. I'm from Israel. I just wanted to tell you shortly that i'm glad the Gama infusion helps you because I have recieved it for the last few years and it hardly helps me.
Moreover, i have suffered from other side effects of the CVID.
Anyhow, have a good year. Bye.

Hi
my name is Eli
I am from Israel too
I am taking the Igg for many years
At the beginning it doesn't help me much
but whenever the doctors increased my dosage according to my weight
and they use to increase the rate from time to time according to my position
it show a great improve.
Are you suffering from sinusitis? and brnchitis and such things?
What do you think about writing each other from time to time and share some knowledge and tips about common prolems

Be well and don't give up
and have a happy hanucka

Eli

Suggest you visit pia websie


pia.org.uk

HI Eli, you didn't mention your age.
I'm 18 years old and have recieved it since I was 6 years old. I once had a bad reaction and though had a few years brake without reciving it.Nevertheless, I think I was more healthy these years.
Yes, I do suffer from Bronchitis, again since I was 6 years old, it began at the same time.
I used to recieve steroids as a preparation for quite a long time but no more.
I also had a problem with my spleen as a result of the CVID. It's a long story but i'm being followed by a great prof. who is an expert on this subject...
Meanwhile, I wish you all the best and most important, STAY HEALTHY
I don't know how old you are, but take this suggestion: live your life as normal as possible. It doesn't have a meaningful effect on my everyday life and shouldn't on others too...

Hi, my name is Richard MacKenzie. I do not have hypogammaglobulinanemia but my father has been diagnosed with it since he was approximately 18 years of age and he is now 47. He is 3rd on the double lung transplant list with high hopes that he shall recover. I do not know to much of this disease but i would like to know as much as possible so I am not left in the dark. About 2-3 years ago the doctors had told him he has approximately 2 years to live and has already surpassed that mark and still going. I am writting this message in hopes that someone can possibly help me understand this disease such as how it starts,any symptoms involved and how to coop with it as well. I've seen some messages stating that it's not a death sentence or deadly disease but i have noticed different with my father. Please write back to my e-mail address , i would love to hear from anyone and it would also be greatly appreciated. thank you. P.S. my e-mail address is BabyBoy_1082@hotmail.com, i look forward to hearing anyones comments.

Hi folks I am 18 years old and I was diagnosed with hypogamaglobulinanemia when I was 2 and a half. I am a senior in high school and I live in New Mexico. I have chronic sinus infections and get monthly IVIG's. I am really suseptable to infections. I would like to discuss more on the subject. I am open to discussion.

Hi I`am Scott from Ontario Canada. I have CVID and have been on treatment for about a year so far everything seems to be going good. I`am 40 years old what side affects are you having? I hope you are feeling better please get back I`am interested to know anything about CVID. Thanks scott

hello everyone i am nina from michigan. i am 20 years old i have been dealing with hypogammaglobulinanemina all my life i have had double pneumonia and chronic sinus infections along with broncitis, however i have never been treated for it . my mother and my youngest sister recieve's the iv treatments. anyhow i was just wondering if at all possible if someone could see my some information on this if at all possible i am going to try to create a oral presentation for my biology class at the end of the semester. thank you.

Hi all. My name is Graham and im 48 yrs old.I suffered from ear nose and throat problems since my birth immunity from mothers milk ceased at about 7 yrs old. While in hosp getting tonsils out I picked up Psudemonis that was never delt with untill I was 36 yrs old. Bi-Lateral pneumonias sometimes 4 times a year. CVID was diagnosed. Ive been on 30g of IGG 3 weekly for 12 yrs with no side affects yet.My lung function is so poor that transplants were an option but the risk is so high because the natural immune system will not kick back in after weaning of the drugs, so they turned me down. Also looked recently at Stem cell treatment but Chemotherapy is also as dangerous.I was at that time given 3 yrs and now its nearly 6 with with no change in status. I look forward to further talk with anyone. Mail me or ad me to your MSN as grahamhyde124@hotmail.com

Hi. I am Arvida. I live in Louisiana right outside of New Orleans. I have been taking gammaglobulin IVIG treatments for about a year. It has worked great. I have only had a couple of attacks that needed serious medical treatment. When I do get ill, I get over it a lot quicker now. I am now on the montly IVIG treatments, but my veins are not holding up too well, so we are going to try the weekly treatments that I will do myself in the muscle of my thigh or stomach. It is a small needle. It will take about the same amount of time (8 hours) but it will be a smaller dose each week. This should help keep the levels more even in my system. Don't give up!!! I didn't think there would ever be anything to help me feel better and not stay sick with sinus infections, brochitis, brochial pneamonia, etc. I went for almost 4 years without a voice. I have only lost my voice twice this year and I got it back within 2 weeks. I have the best doctor ever, Dr. Richard Guilliot. He is wonderful and has made me feel so comfortable with my illness. Good luck

Hi,
I was diagnosed with CVID when i was about 12yr old. Before i started monthly infusions of Intragram, i always experienced chest,ear, nose and throat infections, and spent more time sick then not. Now i am 18 and doing my HSC and play the piano professionally,and am hardly ever sick, but have chronic fatigue. My veins dont hold up too well, and i may need a port later on, but for now all is fine. I hardly get any side effects anymore, just a little nausia and fatigue on the same day of the infusion. I only just found this site whilst browsing, i think its great, and it made me soo happy to know that their are other people just like me
Thankyou all for making me smile
" live life to its fullest, and like everyday is your last"

I am 47 and have been taking Igg IV for the past 15 years. I have been doin well and have not had any problems. I do this 1X a month and take some pain pills a few days a week.

I want to know if anyone has pain in your joints. I do take Igg 1x amonth and hurt some days that I take pain pills to fell good. I am 47 and hope someone that has this can let me know how thay are doing>

Bob

Hi, had it since 19, wasnt diagnosed till i was 30 I have infusions every month, and always have a cold or pnuemonia, regularly in hospital , i am in auckland nz im 43, i drink ensure plus 2 cans a day for vitiams , so would like any views on getting better?? if possibl;e or just would like to have a penpal with the same condition jimlor@xtra.co.nz

I have hypogammaglobinanemia since 1979 and receive 2cc (2ml) injections of gammaglobin every other week and I am doing great. Please reply to StartYourEngines at aol if you would like to write. thank you

I am also diagnosed with CVID and have been since I was 21, I am now 24 and have had IVIG infusions every 4 weeks until recently they increased to every 2 weeks. I have also suffered from frequent infections like sinusitis and brochitis. I also have a 15mo. year old son who was diagnosed with this disease at 6mo. and been recieving 4 week infusions. I would love to learn more about this disease, and how every one has managed it. So please write to me anytime.

Bryan, I am 27 and have had cvid since I was 24, I recieve ivig every four weeks, I have a four year old son that carries the gene but so far doesn't receive treatments. I don't understand how this disease starts or why some people have and some don't. But I do have cronic sinucitis and cronic staph infections of the skin. My doctor says that the cvid is primarily heriditary but it can also be picked up almost any where. My mother refuses to get tested so I guess I will truley never know.

I too have pains in my joints. I suffer from Hypogammaglobulinanemia along with pernicous anemia. I still lead a very active life but suffer from almost arthritis like pain in my joints