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Hypogammaglobulinemia and non responders
Hi everybody,
In my quest for answers I brought my records to a new doctor who looked them over and examined me. He did some additional tests and found that I had Hypogammaglobulinemia, also known as Common Variable Immunoglobulin Deficiency. This is where all of the IG levels are lower then normal. The most extreem case of this is known as Boy in the Bubble syndrome. What is significant is that most people with HCV have the exact opposite, The IG levels are above normal. He stated that he has seen this before and thinks that this might be a contributing factor to my nonresponse to treatment. Anybody else come across this? Non responders might want to get this checked!
In my quest for answers I brought my records to a new doctor who looked them over and examined me. He did some additional tests and found that I had Hypogammaglobulinemia, also known as Common Variable Immunoglobulin Deficiency. This is where all of the IG levels are lower then normal. The most extreem case of this is known as Boy in the Bubble syndrome. What is significant is that most people with HCV have the exact opposite, The IG levels are above normal. He stated that he has seen this before and thinks that this might be a contributing factor to my nonresponse to treatment. Anybody else come across this? Non responders might want to get this checked!
SouthernBoy, Hi and tell me again....what state are you in? My e-mail...is southern34belle at yahoo I was just wondering if we live close....I am in S.C.!?!?! I wanted to say great research!!! Sounds like you're on top of things and I can't wait to hear more on "your on-going study". That's the great part of this forum....the ppl here DO care enough to "keep on top on things"!!!!! Please keep us all in-formed on your out come. Best Wishes in your Quest on the fight against Hep C!!!!! God Bless you and you are in my prayers, Cindee
Jodi, Hi there!!! I am soooooo happy to hear Amanda is doing good. You are both, always in my prayers. We might not talk often, but ya'll are NOT FORGOTTEN!!!!!!! God be w/ you both, and I hope to hear more great news from you @ Amanda. Much Love, Cindee
rsterling...Hi Robin, I've been wondering how you are feeling lately? I hope this post finds you well. Where are you again in tx??? I know you just got started and I pray you are having miminal sx. You hang in there and YOU KICK DRAGON BUTT!!!!!! You are always in my prayers....I've missed your post lately. Don't stay away so long......keep us up to date and keep the great questions coming!!!!!! You always add a sense of love to this forum! Best Wishes in your fight against the nastsy 'ole dragon! Much Love @ Many Prayers!!!!! Cindee :)
Layla...hey girl, and TY so much for the interesting article. What a lousey reporter huh???? ....I hope you are feeling good these days....and read on!!!!!! Much love and prayers, Cindee
rev_____, hi ya dude! TY so much for that un-informed reporter's addy. As soon as I get done on the forum here...I will be e-mailing him!!!!! Once again you've come thru w/ some much wanted info!!!!! Hope you're doing as well as possible these days. I had my bx and will be writing a book LOL on up in the last post of today. It was a "hoot". Scott, I love ya mannnnnnnnn! As always, TY for researching soooooooo much info for us all. You are a God send! God bless you, and I hope your family is doing good these days....."poor family"...hehehehe LOL !!!!!!! No really they must be so proud of YOU...I know I am. Keep up the wonderful studies!!!!!! Love @ Prayers, Cindee
Everybody....I think WE ALL SHOULD WRITE Patrick Marley and let him know if he needs some info on Hep C....which we ALL know he does....I for one am going to give him this addy to our forum!!!!( and a few more). He extremely NEEDS A WAKE-UP CALL!!!!!!!AND SO DO THE PUBLISHERS OF THAT NEWSPAPER !!!!!!! Looks to me like that newspaper might only be good for "fish wrapping"!!!!!!
Yes ya'll can tell he's defiantely "touched a nerve" w/ me. And that doesn't happen very often. But when it comes to my children, my grandchildren and any of my friends or family memebers.....be it...."blood related family"....or MY HEP C FAMILY, I can get a bit "mean" when someone hurts or lashes out against one of them....especially when they have NO RIGHT to make consensus, when they don't have a clue!!!!!!
Hope you all are doing good today!!!!!! I love you ALL with soooooooo much of my heart! PRAYERS TO YOU ALL, Cindee
Jodi, Hi there!!! I am soooooo happy to hear Amanda is doing good. You are both, always in my prayers. We might not talk often, but ya'll are NOT FORGOTTEN!!!!!!! God be w/ you both, and I hope to hear more great news from you @ Amanda. Much Love, Cindee
rsterling...Hi Robin, I've been wondering how you are feeling lately? I hope this post finds you well. Where are you again in tx??? I know you just got started and I pray you are having miminal sx. You hang in there and YOU KICK DRAGON BUTT!!!!!! You are always in my prayers....I've missed your post lately. Don't stay away so long......keep us up to date and keep the great questions coming!!!!!! You always add a sense of love to this forum! Best Wishes in your fight against the nastsy 'ole dragon! Much Love @ Many Prayers!!!!! Cindee :)
Layla...hey girl, and TY so much for the interesting article. What a lousey reporter huh???? ....I hope you are feeling good these days....and read on!!!!!! Much love and prayers, Cindee
rev_____, hi ya dude! TY so much for that un-informed reporter's addy. As soon as I get done on the forum here...I will be e-mailing him!!!!! Once again you've come thru w/ some much wanted info!!!!! Hope you're doing as well as possible these days. I had my bx and will be writing a book LOL on up in the last post of today. It was a "hoot". Scott, I love ya mannnnnnnnn! As always, TY for researching soooooooo much info for us all. You are a God send! God bless you, and I hope your family is doing good these days....."poor family"...hehehehe LOL !!!!!!! No really they must be so proud of YOU...I know I am. Keep up the wonderful studies!!!!!! Love @ Prayers, Cindee
Everybody....I think WE ALL SHOULD WRITE Patrick Marley and let him know if he needs some info on Hep C....which we ALL know he does....I for one am going to give him this addy to our forum!!!!( and a few more). He extremely NEEDS A WAKE-UP CALL!!!!!!!AND SO DO THE PUBLISHERS OF THAT NEWSPAPER !!!!!!! Looks to me like that newspaper might only be good for "fish wrapping"!!!!!!
Yes ya'll can tell he's defiantely "touched a nerve" w/ me. And that doesn't happen very often. But when it comes to my children, my grandchildren and any of my friends or family memebers.....be it...."blood related family"....or MY HEP C FAMILY, I can get a bit "mean" when someone hurts or lashes out against one of them....especially when they have NO RIGHT to make consensus, when they don't have a clue!!!!!!
Hope you all are doing good today!!!!!! I love you ALL with soooooooo much of my heart! PRAYERS TO YOU ALL, Cindee
Hi honey,
Hi Robin,
honey: Thanks for the encouragement as usual. I appreciate your support, comments and good thoughts. It really helps. Hopefully, this will be something that will help not only me, but other nonresponders also.
Robin: I would definitely take this to my doc and request the IG screen. You never know what could come of it. We are all grasping at straws here.
Best to you both,
Steve
Hi Robin,
honey: Thanks for the encouragement as usual. I appreciate your support, comments and good thoughts. It really helps. Hopefully, this will be something that will help not only me, but other nonresponders also.
Robin: I would definitely take this to my doc and request the IG screen. You never know what could come of it. We are all grasping at straws here.
Best to you both,
Steve
I am wondering if we can take this info to our doc's and request this test?
Thanks Robin
Thanks Robin
Hi Jodi,
Hi Maj Neni,
Jodi: I am happy to hear that Amanda is feeling well. I do not know what will come of this avenue, but I think it is worth looking into. Maybe you could have the test done on Amanda. If it comes out normal or above then that answers some questions. If it is low, then you might want to follow up some more. I will let you know as I find out more information.
Maj Neni: Good to hear from you too. I am glad your son outgrew this. My understanding is that this condition is very rare in its extreme form (1 in 25,000 or 1 in 50,000 people), but somewhat more common in less severe cases. The docs do not know if, in my case, it is a result of genetics, HCV, or tx. What is interesting is that I too have always been very healthy (at least until this HCV thing). In fact, I have never had a skin infection or the like. Interesting huh. We will see where this leads.
Best to you both,
Steve
Hi Maj Neni,
Jodi: I am happy to hear that Amanda is feeling well. I do not know what will come of this avenue, but I think it is worth looking into. Maybe you could have the test done on Amanda. If it comes out normal or above then that answers some questions. If it is low, then you might want to follow up some more. I will let you know as I find out more information.
Maj Neni: Good to hear from you too. I am glad your son outgrew this. My understanding is that this condition is very rare in its extreme form (1 in 25,000 or 1 in 50,000 people), but somewhat more common in less severe cases. The docs do not know if, in my case, it is a result of genetics, HCV, or tx. What is interesting is that I too have always been very healthy (at least until this HCV thing). In fact, I have never had a skin infection or the like. Interesting huh. We will see where this leads.
Best to you both,
Steve
Hi Steve,
I would be extremely interested in what you find out about this... Everytime we come across something that "could be why" we don't respond...I have to learn more...I will also see what I can find out...Good Luck! I think about you often and hope you are doing well
Jodi
I would be extremely interested in what you find out about this... Everytime we come across something that "could be why" we don't respond...I have to learn more...I will also see what I can find out...Good Luck! I think about you often and hope you are doing well
Jodi
Great News! I am so glad are going to this new dr as this sounds very encouraging! I know you have had a rough time challenging this disease and so need a break! I will pray for you and please let us know when you find out!
Hi, Steve,
I'm glad to hear from you.
I've never had this lab result, though my whole birth family was a bit below the normal range on WBC'c. (Neutropenia)
Interestingly, my son (almost 22 yrs.) was very jaundiced for over two weeks at birth, and couldn't produce his immunoglobulins (Gammaglobulinenia) for most of the first year of his life. We spent that year in virtual house-arrest. I suspect he may have been exposed to hep-c before birth and fought it off. Anyway, he "grew out of it", his immune system kicked in. He has been tested 2x (last time about 2 years ago) for HCV and found negative, not even exposed. Interestingly he grew up with virtually no colds, sore throats, etc., just a smart, robust kid. If anything he had an overactive immune system, with moderate asthma and allergies.
I'll be interested in reading more about this.
Maj Neni
I'm glad to hear from you.
I've never had this lab result, though my whole birth family was a bit below the normal range on WBC'c. (Neutropenia)
Interestingly, my son (almost 22 yrs.) was very jaundiced for over two weeks at birth, and couldn't produce his immunoglobulins (Gammaglobulinenia) for most of the first year of his life. We spent that year in virtual house-arrest. I suspect he may have been exposed to hep-c before birth and fought it off. Anyway, he "grew out of it", his immune system kicked in. He has been tested 2x (last time about 2 years ago) for HCV and found negative, not even exposed. Interestingly he grew up with virtually no colds, sore throats, etc., just a smart, robust kid. If anything he had an overactive immune system, with moderate asthma and allergies.
I'll be interested in reading more about this.
Maj Neni
Hi there cuteus,
This doc is a very experienced GI specializing in HCV treatment. He is located in Milwalkee. From our conversation, he indicated that there is a treatment for this called IVIG and that he has used it before. I don't know much more about it at this point but am gathering information. HCV causes the immune system to work overtime as it tries to eradicate the virus. This is why most HCV sufferers have Hypergammaglobulinemia. This is where all the IG levels are elevated. As we know, interferon does not directly kill the virus, but stimulates the immune system to do so. If the immune system is weak, it makes sense that the effectiveness of the interferon tx will be reduced. Much of this is guesswork, put together from what was said to me and the research I have done to this point. I will keep everybody informed as I find out more.
Steve
This doc is a very experienced GI specializing in HCV treatment. He is located in Milwalkee. From our conversation, he indicated that there is a treatment for this called IVIG and that he has used it before. I don't know much more about it at this point but am gathering information. HCV causes the immune system to work overtime as it tries to eradicate the virus. This is why most HCV sufferers have Hypergammaglobulinemia. This is where all the IG levels are elevated. As we know, interferon does not directly kill the virus, but stimulates the immune system to do so. If the immune system is weak, it makes sense that the effectiveness of the interferon tx will be reduced. Much of this is guesswork, put together from what was said to me and the research I have done to this point. I will keep everybody informed as I find out more.
Steve
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