In regards to your question "could we have been exposed at birth, but shown no symptoms until later? Does anyone know if the virus could lay doormat then flair up when the body is compromised with some other problem?"
I was born with it. Wasn't diagnosed until I was 13. I know I was born with it because between birth and diagnosis I had not had sex, never drank, hadn't done any drugs, didn't have any surgery, no tattoos, and no blood transfusions. Oh and my sister (3 years older than me) also testing + kind of solidified it. We found out on a whim - My sis was getting jaw surgery and they took blood from her in case she needed it during surgery but of course tested it so it could be donated if she didn't. Neither of us had any "symptoms". In all actuality, it's probably a wonderful thing my sister had that surgery because I may still not know if she hadn't. I was born in 1983 so I don't fall into that "window" the CDC established. And being that I never had symptoms or abnormal blood work - I often wonder when/if I would have ever found out. But I did find out and like I said, lived 31 years without an abnormal blood work up. Looking back over the first 31 years of my life I wonder things like: I used to get sick more often than my friends, could that have been related? I used to get fatigued pretty easily and could sleep for hours, could that have been related? Who knows. And I say I lived 31 years without any "symptoms" instead of my entire life because I started treatment 1 month before my 31st birthday! I never treated before that due to limited options for GT2 and being that I was otherwise "healthy' it was just something there inside me. But then of course Sovaldi was approved and my doc called a week later to schedule my appointment. The rest is history!
mallani said
Apr 16, 2015
Hi all,
Many articles have been written about the origins of HCV. Authors have a wide range of opinions.
I personally believe HCV is a fairly recent virus. HepC was first called ' transfusion hepatitis' then 'non-A, non-B' hepatitis until the virus was identified in 1989. It was first reported after World War 2, and the surge of cases suggested it came back to the Western world by returning servicemen. They were perhaps infected by war-related transfusions, or from contact with infected blood in SE Asia or Africa. There is plenty of evidence that this is a primitive virus, and that all genotypes derived by mutation from the ' parent' virus, now called Genotype 1b. This parent virus must have 'jumped' from an animal host. Dogs, horses, bats and rodents have all been mentioned. All can carry a reservoir of an RNA virus, similar to HCV.
The spread through the Western world was rapid. New cases rose dramatically as IV drug use became commonplace in the 1960's and 1970's. Blood transfusions, vaccinations and use of other contaminated blood products also became more common during this period.
I believe most patients were infected during the period between 1945 and 1991. Many of those that are still alive will have cirrhosis.
Of those infected since 1991, it is my belief that most acquired the virus from IV drug use. Tattoos , sex transmission etc may account for a few, and for some, there is no obvious cause.
There is no evidence that a liver disease similar to HCV was reported prior to the 1940's, and retrospective studies have been attempted.
The ' baby-boomers' are the group who were most likely to be infected during the rise of IV drug experimentation in the 60's, 70's and early 80's. I believe this is why the years 1945-65 were chosen.
This is just my humble opinion. Cheers.
lonewolf said
Apr 16, 2015
Its only my opinion, but I believe the Hepatitis C virus has been around for hundreds if not thousands of years just like the common cold and influenza and many other viruses. Baby boomers are more at risk because the blood supply wasn't tested until July of 1992 and our knowledge of viruses in general was not what it is today nor was the technology. Who knew that sharing needles in the sixties or when-ever could pass on a virus until the discovery of HIV? Just my opinion, but I believe there's nothing new about any of these viruses. Our knowledge of it is what's new. People may have been dying in the 1900's or when-ever of Hep C with their death certificate listing "Visitation of God" as the cause. I think all people regardless of age or lifestyle should be tested. In Michigan, where I live, they are considering making it a felony to knowingly not inform a sex partner that you are HCV positive. Just like HIV. It has already passed in the Senate and now goes to the house. They want to test all prisoners also who are being released from prison in the same legislation. They estimate the cost to be $15.00 dollars a prisoner. Money well spent I think. That's half the cost of a flu shot. As far as I know, most people infected with HCV have no idea they have it! Unlike HIV, which left untreated is about 95% fatal, the majority of people with HCV have no symptoms. And when or if they do it is only because serious damage has already occurred. Many people go their whole lives with HCV and go on to die of other causes never knowing they had it.
-- Edited by lonewolf on Thursday 16th of April 2015 11:58:19 PM
-- Edited by lonewolf on Friday 17th of April 2015 01:42:44 AM
Iris Dragonfly said
Apr 16, 2015
Thanks for your input Tig, Michaele, Ro, Jill, the more I think about it the more I wonder if this is something that was there since birth. I worked for about 8 months in a print shop when I came down with an acute case, that since went chronic, and I sometime wonder if all the chemicals I was exposed to made it kick into high gear???, maybe my body was just trying to detox me of all that inhaled garbage?, and that was when my liver enzymes came back elevated, and the dr. then discovered the non-a non-b. Since I was adopted I have no records on the details of my birth, though I recently found out I can request them.
I feel if this possibility of it being passed at birth, invitro, or by blood products used before 1992, ..That, THAT should be the range of mandatory testing. 1945-1992, right?
Ro, I understand your grief...after my daughter was born I was scared to death to have any more children for fear of passing it on. Blasted virus, so I didn't.
BB, Iris
Cinnamon Girl said
Apr 12, 2015
Ro wrote:
Iris,
Unfortunately for my daughter, the doctors believe she was exposed pre/at birth. I never knew I had the virus until 1992. She was born in 1981. She has tested + for antigen - negative for virus. Her liver enzymes had always been normal, but she did develop liver issues with pregnancy. Her first pregnancy was unsuccessful. She developed Severe HELPP syndrome and her liver almost ruptured. She had been monitored closely. Her 2nd pregnancy was successful, but with similar liver issues. Her doctors continue to monitor. Her husband and daughter have tested negative for the virus.
The guilt is overwhelming sometimes.. that I have inflicted this on my daughter. Her case continues to be studied by the hepatologists.
There is so much that we do not now about this awful virus! Breakthroughs in treatment are wonderful but so slow in coming.. we can only pray that this virus can be totally eradicated.
Ro
Hi Ro, I`m so sorry about your daughter`s health and pregnancy issues, that`s very sad and must have been so distressing.
I know it`s easy for me to say, but you really have no cause to feel such a burden of guilt though, none of it was your fault and like many of us here you had no idea that you were infected until years after your child was born.
I`m sure your support to her has been invaluable and it`s wonderful that your daughter has a healthy child and you have a granddaughter, and she must bring you all great joy. Life can be so unfair sometimes and we all have to be thankful for the good things it brings us.
Some day this virus will be history, I`m sure.
Cinnamon Girl said
Apr 12, 2015
Iris Dragonfly wrote:
Hi folks,
At a recent Dr. visit, I saw a bulletin on the wall that recommends all baby boomers...those born between 1945 and 1965 be tested for "C". Since blood products were unsafe until about 1992, why stop at 1965?
The question that plagues me is...could we have been exposed at birth, but shown no symptoms until later? Does anyone know if the virus could lay doormat then flair up when the body is compromised with some other problem?
Thanks, Iris
Hi Iris, that`s a good question. Luckily Hep C progresses very slowly, especially in children, and in many cases their own immune system will clear the virus spontaneously.
Many people who are infected have no symptoms, at whatever age they were first infected, although the virus is still there causing damage and not what you`d call dormant. I suppose if the immune system becomes compromised and under added stress from another illness or chronic infection that would allow the Hep C virus to replicate more rapidly and maybe certain symptoms would become more apparent.
I agree with you on the question of testing, it really should be a lot more routine.
Ro said
Apr 11, 2015
Iris,
Unfortunately for my daughter, the doctors believe she was exposed pre/at birth. I never knew I had the virus until 1992. She was born in 1981. She has tested + for antigen - negative for virus. Her liver enzymes had always been normal, but she did develop liver issues with pregnancy. Her first pregnancy was unsuccessful. She developed Severe HELPP syndrome and her liver almost ruptured. She had been monitored closely. Her 2nd pregnancy was successful, but with similar liver issues. Her doctors continue to monitor. Her husband and daughter have tested negative for the virus.
The guilt is overwhelming sometimes.. that I have inflicted this on my daughter. Her case continues to be studied by the hepatologists.
There is so much that we do not now about this awful virus! Breakthroughs in treatment are wonderful but so slow in coming.. we can only pray that this virus can be totally eradicated.
Ro
Michaele said
Apr 11, 2015
Hey Tig Any time the liver profile is elevated , they are supposed to check it again in a few weeks and if is still elevated, then a Hep C test is done. Some people encluding Drs are not aware of this. Michaele
Tig said
Apr 11, 2015
Iris,
Here are a couple of articles that discuss your question regarding relapse following SVR. It's rare but not impossible.
Your point is a valid one. The reason as you mentioned, is that the majority of cases were found to be in that bracket of time. Now that we have found it has affected all age groups, it would be wise to consider a much wider scope of ages.
The physicians are the tip of the spear and should consider expanding the age for screenings and any time they see an elevated ALT/AST, a HCV antibody test should be ran. The cost of the test is $50-100 and those costs are generally accepted as routine testing, unlike the PCR which often needs pre-approval and is big bucks.
I agree that some simple changes in guidelines would make a big difference in helping to resolve undiagnosed chronic cases before they have the chance to sit and start boiling in the bodies of the unaware. By discussing this openly we are hopefully opening the minds of those we are able to touch. Thank you for bringing this up!
Iris Dragonfly said
Apr 11, 2015
Hi folks,
At a recent Dr. visit, I saw a bulletin on the wall that recommends all baby boomers...those born between 1945 and 1965 be tested for "C". Since blood products were unsafe until about 1992, why stop at 1965?
The question that plagues me is...could we have been exposed at birth, but shown no symptoms until later? Does anyone know if the virus could lay doormat then flair up when the body is compromised with some other problem?
Hi Iris,
In regards to your question "could we have been exposed at birth, but shown no symptoms until later? Does anyone know if the virus could lay doormat then flair up when the body is compromised with some other problem?"
I was born with it. Wasn't diagnosed until I was 13. I know I was born with it because between birth and diagnosis I had not had sex, never drank, hadn't done any drugs, didn't have any surgery, no tattoos, and no blood transfusions. Oh and my sister (3 years older than me) also testing + kind of solidified it. We found out on a whim - My sis was getting jaw surgery and they took blood from her in case she needed it during surgery but of course tested it so it could be donated if she didn't. Neither of us had any "symptoms". In all actuality, it's probably a wonderful thing my sister had that surgery because I may still not know if she hadn't. I was born in 1983 so I don't fall into that "window" the CDC established. And being that I never had symptoms or abnormal blood work - I often wonder when/if I would have ever found out. But I did find out and like I said, lived 31 years without an abnormal blood work up. Looking back over the first 31 years of my life I wonder things like: I used to get sick more often than my friends, could that have been related? I used to get fatigued pretty easily and could sleep for hours, could that have been related? Who knows. And I say I lived 31 years without any "symptoms" instead of my entire life because I started treatment 1 month before my 31st birthday! I never treated before that due to limited options for GT2 and being that I was otherwise "healthy' it was just something there inside me. But then of course Sovaldi was approved and my doc called a week later to schedule my appointment. The rest is history!
Hi all,
Many articles have been written about the origins of HCV. Authors have a wide range of opinions.
I personally believe HCV is a fairly recent virus. HepC was first called ' transfusion hepatitis' then 'non-A, non-B' hepatitis until the virus was identified in 1989. It was first reported after World War 2, and the surge of cases suggested it came back to the Western world by returning servicemen. They were perhaps infected by war-related transfusions, or from contact with infected blood in SE Asia or Africa. There is plenty of evidence that this is a primitive virus, and that all genotypes derived by mutation from the ' parent' virus, now called Genotype 1b. This parent virus must have 'jumped' from an animal host. Dogs, horses, bats and rodents have all been mentioned. All can carry a reservoir of an RNA virus, similar to HCV.
The spread through the Western world was rapid. New cases rose dramatically as IV drug use became commonplace in the 1960's and 1970's. Blood transfusions, vaccinations and use of other contaminated blood products also became more common during this period.
I believe most patients were infected during the period between 1945 and 1991. Many of those that are still alive will have cirrhosis.
Of those infected since 1991, it is my belief that most acquired the virus from IV drug use. Tattoos , sex transmission etc may account for a few, and for some, there is no obvious cause.
There is no evidence that a liver disease similar to HCV was reported prior to the 1940's, and retrospective studies have been attempted.
The ' baby-boomers' are the group who were most likely to be infected during the rise of IV drug experimentation in the 60's, 70's and early 80's. I believe this is why the years 1945-65 were chosen.
This is just my humble opinion. Cheers.
Its only my opinion, but I believe the Hepatitis C virus has been around for hundreds if not thousands of years just like the common cold and influenza and many other viruses. Baby boomers are more at risk because the blood supply wasn't tested until July of 1992 and our knowledge of viruses in general was not what it is today nor was the technology. Who knew that sharing needles in the sixties or when-ever could pass on a virus until the discovery of HIV? Just my opinion, but I believe there's nothing new about any of these viruses. Our knowledge of it is what's new. People may have been dying in the 1900's or when-ever of Hep C with their death certificate listing "Visitation of God" as the cause. I think all people regardless of age or lifestyle should be tested. In Michigan, where I live, they are considering making it a felony to knowingly not inform a sex partner that you are HCV positive. Just like HIV. It has already passed in the Senate and now goes to the house. They want to test all prisoners also who are being released from prison in the same legislation. They estimate the cost to be $15.00 dollars a prisoner. Money well spent I think. That's half the cost of a flu shot. As far as I know, most people infected with HCV have no idea they have it! Unlike HIV, which left untreated is about 95% fatal, the majority of people with HCV have no symptoms. And when or if they do it is only because serious damage has already occurred. Many people go their whole lives with HCV and go on to die of other causes never knowing they had it.
-- Edited by lonewolf on Thursday 16th of April 2015 11:58:19 PM
-- Edited by lonewolf on Friday 17th of April 2015 01:42:44 AM
Thanks for your input Tig, Michaele, Ro, Jill, the more I think about it the more I wonder if this is something that was there since birth. I worked for about 8 months in a print shop when I came down with an acute case, that since went chronic, and I sometime wonder if all the chemicals I was exposed to made it kick into high gear???, maybe my body was just trying to detox me of all that inhaled garbage?, and that was when my liver enzymes came back elevated, and the dr. then discovered the non-a non-b. Since I was adopted I have no records on the details of my birth, though I recently found out I can request them.
I feel if this possibility of it being passed at birth, invitro, or by blood products used before 1992, ..That, THAT should be the range of mandatory testing. 1945-1992, right?
Ro, I understand your grief...after my daughter was born I was scared to death to have any more children for fear of passing it on. Blasted virus, so I didn't.
BB, Iris
Hi Ro, I`m so sorry about your daughter`s health and pregnancy issues, that`s very sad and must have been so distressing.
I know it`s easy for me to say, but you really have no cause to feel such a burden of guilt though, none of it was your fault and like many of us here you had no idea that you were infected until years after your child was born.
I`m sure your support to her has been invaluable and it`s wonderful that your daughter has a healthy child and you have a granddaughter, and she must bring you all great joy. Life can be so unfair sometimes and we all have to be thankful for the good things it brings us.
Some day this virus will be history, I`m sure.
Hi Iris, that`s a good question. Luckily Hep C progresses very slowly, especially in children, and in many cases their own immune system will clear the virus spontaneously.
Many people who are infected have no symptoms, at whatever age they were first infected, although the virus is still there causing damage and not what you`d call dormant. I suppose if the immune system becomes compromised and under added stress from another illness or chronic infection that would allow the Hep C virus to replicate more rapidly and maybe certain symptoms would become more apparent.
I agree with you on the question of testing, it really should be a lot more routine.
Iris,
Unfortunately for my daughter, the doctors believe she was exposed pre/at birth. I never knew I had the virus until 1992. She was born in 1981. She has tested + for antigen - negative for virus. Her liver enzymes had always been normal, but she did develop liver issues with pregnancy. Her first pregnancy was unsuccessful. She developed Severe HELPP syndrome and her liver almost ruptured. She had been monitored closely. Her 2nd pregnancy was successful, but with similar liver issues. Her doctors continue to monitor. Her husband and daughter have tested negative for the virus.
The guilt is overwhelming sometimes.. that I have inflicted this on my daughter. Her case continues to be studied by the hepatologists.
There is so much that we do not now about this awful virus! Breakthroughs in treatment are wonderful but so slow in coming.. we can only pray that this virus can be totally eradicated.
Ro
Hey Tig Any time the liver profile is elevated , they are supposed to check it again in a few weeks and if is still elevated, then a Hep C test is done. Some people encluding Drs are not aware of this. Michaele
Iris,
Here are a couple of articles that discuss your question regarding relapse following SVR. It's rare but not impossible.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3911426/
http://www.notwithoutafight.org/after-the-cure.html
Hi Iris,
Your point is a valid one. The reason as you mentioned, is that the majority of cases were found to be in that bracket of time. Now that we have found it has affected all age groups, it would be wise to consider a much wider scope of ages.
The physicians are the tip of the spear and should consider expanding the age for screenings and any time they see an elevated ALT/AST, a HCV antibody test should be ran. The cost of the test is $50-100 and those costs are generally accepted as routine testing, unlike the PCR which often needs pre-approval and is big bucks.
I agree that some simple changes in guidelines would make a big difference in helping to resolve undiagnosed chronic cases before they have the chance to sit and start boiling in the bodies of the unaware. By discussing this openly we are hopefully opening the minds of those we are able to touch. Thank you for bringing this up!
Hi folks,
At a recent Dr. visit, I saw a bulletin on the wall that recommends all baby boomers...those born between 1945 and 1965 be tested for "C". Since blood products were unsafe until about 1992, why stop at 1965?
The question that plagues me is...could we have been exposed at birth, but shown no symptoms until later? Does anyone know if the virus could lay doormat then flair up when the body is compromised with some other problem?
Thanks, Iris