Aa
How can you date the time of infection?
When someone says they have been infected for 20+ years, is that a guess based on the likelihood of being infected by something that happened in the past, (transfusion; sharing needles, toothbrushes etc) or is there a test that determines how long you have been infected?
Still trying to understand something of how Hep C acts
I am curious why so many people are in their 40s and 50s when they discover they are infected, and they have had the disease for years and years before that, with no obvious signs of it.
Does the disease take a long time to cause actual damage, or does it develop more rapidly when a persons general health is low or in decline?
Or maybe both.
There are over a dozen different geno types, anyone know in simple English what makes for the differences, and why treatment varies?
Still trying to understand something of how Hep C acts
I am curious why so many people are in their 40s and 50s when they discover they are infected, and they have had the disease for years and years before that, with no obvious signs of it.
Does the disease take a long time to cause actual damage, or does it develop more rapidly when a persons general health is low or in decline?
Or maybe both.
There are over a dozen different geno types, anyone know in simple English what makes for the differences, and why treatment varies?
I thank you all for sharing so much information and I am so happy to have found you all. I think I will learn so much here and I thank you all. I will have a better ride on this HVC bus now that I know you are all out there and have the same problems. Good luck to us all.
Don't mind me joining the discussion late; my comments are on your original topic.
I was easily able to pinpoint the time of infection. I used recreational drugs pretty regularly as a teenager and into early 20s, mostly pot, lsd, amphetamines, and other ingestible and smokable stuff. Only twice did I inject, and on one occasion with confirmed sterile equipment. On the other, it was with a well worn single use disposable that, well, should have been disposed of after the first use like the directions read. I soon became ill with hep B and was hospitalized. Months later a biopsy indicated that the hbv had not become chronic, so I thought I was in the clear. At that time non-A non-B hep had not been confirmed.
And then the years rolled by. And vague feelings of unwellness became stronger signs of illness. Autoimmune thyroid disease, psoriasis, chronic fatigue, nausea, depression, and on and on.. In retrospect my primary care physician was not to quick to figure it through and I, wanting to believe hepatitis was in my distant past, was not too anxious to find out otherwise. Only in 2002 (27 years after infection) did I finally submit to the rights lab tests, confirming 1a infection at about 400,000 IU, a pretty low VL. I treated in 2003 and have since been clear.
I have an impression rather than an explanation as to why after 27 years I had not developed advanced fibrosis. Here are some of the features of my experience:
Constant nausea (bad) leading to low caloric intake and body weight (good).
High coffee consumption (5 cups per day).
Regular exercise.
Avoidance of high alcohol consumption.
Most importantly and probably sufficient unto itself, a fortunate genetic makeup that managed the disease reasonably well and enabled a sustained response to treatment.
None of these factors may in fact have had a role, but I won't let that prevent me from speculating.
Here is a link to an online reference that lays out a lot of information on genotypes:
http://www.hepatitis-central.com/hcv/genotype/toc.html. Regional concentrations of some of the more obscure genos, such as 6a being found only in Hong Kong, Macau, and Vietnam are quite interesting. Of course, as an the duration of an individual's infection lengthens, their own pool of quasispecies becomes richly varied and impossibly complex as a result of the virus evading the immune response and replication error. At the link about read the information on genetic variation and HCV genotyping.
One last comment.. I too am intrigued by references to the liver in descriptions of personality and behavioral attributes. The phrases you cite do have a resonance of truth for me. I found that when I was sickest, my mood was dour, depressed, not particularly courageous and exceedingly short of temper. I had a preference for solitary suffering over engagement with lively (healthy) people. Just my own experience.
I was easily able to pinpoint the time of infection. I used recreational drugs pretty regularly as a teenager and into early 20s, mostly pot, lsd, amphetamines, and other ingestible and smokable stuff. Only twice did I inject, and on one occasion with confirmed sterile equipment. On the other, it was with a well worn single use disposable that, well, should have been disposed of after the first use like the directions read. I soon became ill with hep B and was hospitalized. Months later a biopsy indicated that the hbv had not become chronic, so I thought I was in the clear. At that time non-A non-B hep had not been confirmed.
And then the years rolled by. And vague feelings of unwellness became stronger signs of illness. Autoimmune thyroid disease, psoriasis, chronic fatigue, nausea, depression, and on and on.. In retrospect my primary care physician was not to quick to figure it through and I, wanting to believe hepatitis was in my distant past, was not too anxious to find out otherwise. Only in 2002 (27 years after infection) did I finally submit to the rights lab tests, confirming 1a infection at about 400,000 IU, a pretty low VL. I treated in 2003 and have since been clear.
I have an impression rather than an explanation as to why after 27 years I had not developed advanced fibrosis. Here are some of the features of my experience:
Constant nausea (bad) leading to low caloric intake and body weight (good).
High coffee consumption (5 cups per day).
Regular exercise.
Avoidance of high alcohol consumption.
Most importantly and probably sufficient unto itself, a fortunate genetic makeup that managed the disease reasonably well and enabled a sustained response to treatment.
None of these factors may in fact have had a role, but I won't let that prevent me from speculating.
Here is a link to an online reference that lays out a lot of information on genotypes:
http://www.hepatitis-central.com/hcv/genotype/toc.html. Regional concentrations of some of the more obscure genos, such as 6a being found only in Hong Kong, Macau, and Vietnam are quite interesting. Of course, as an the duration of an individual's infection lengthens, their own pool of quasispecies becomes richly varied and impossibly complex as a result of the virus evading the immune response and replication error. At the link about read the information on genetic variation and HCV genotyping.
One last comment.. I too am intrigued by references to the liver in descriptions of personality and behavioral attributes. The phrases you cite do have a resonance of truth for me. I found that when I was sickest, my mood was dour, depressed, not particularly courageous and exceedingly short of temper. I had a preference for solitary suffering over engagement with lively (healthy) people. Just my own experience.
Don't give up on finding the right doctor- they are out there. In my experience (and it seems like the experience many on this site have had) most doctors know very little about this disease and are especially limited in their knowledge of advanced cases and end stage liver disease. Are you seeing a Hepatologist and have you started the screening process for a transplant? I think when you do you will find a new set of doctors, nurses, PAs, etc. that are very knowledgeable about this disease and are dedicated to helping people like us. In the past year, I went through much of what you are now experiencing- including frequent bouts of Hepatic Encephalopathy. It was a great relief to me when I started going through the local University's transplant screening process as I was immediately in touch with many people who knew all about what I was going through and who could not only help get through the pain, fatigue, and nausea, but also gave me hope. I was fortunate to receive a new liver 5 months ago and I now have a chance to hope for the future. I pray you will experience the same and that you find the right medical team to help you. This site is a good place to be as we all just want to help each other out. Although we frequently debate here, it is all done in the spirit of lifting each others knowledge base and helping one another out. I learned much invaluable information from the people here. Good luck to you, try your best to stay positive and let us know if you have any questions. Live well, be strong.
i was 17, and one day i turned a lovely shade of yellow and i thought i had the flu. whammo, non AB Hep...oh to be young and stupid again. so 41 years later i await treatment. in my case it's obvious, but in so many people, it is a shock to find out. the really sad thing is that i knew about it and i did nothing until i had to. oh to be old and stupid again...
sidenote: who cares how we got it. the important thing is getting rid of it. so much wasted time on this subject.
sidenote: who cares how we got it. the important thing is getting rid of it. so much wasted time on this subject.
Welcome and thank you for sharing your story. First of all, I'm so very sorry for the secret you had to live under during your childhood! Second of all, I wish you the best with your search for a really good doctor that you can feel comfortable working with so that you both are able to collectively come up with a medical plan that will help your situation.
Keep us posted!
Keep us posted!
I was diagnosed in 2005 with HCV, everyone was confused as to how I got it especially because mine is a genotype 4e. That is very rare here in the US. Mainly found in the Middle East. I am 47 years old now and I have Cirrhosis with Hepatic Encephalopathy and Portal Hypertension. I never used any drugs or had any tattoo's or blood transfusions. So you can understand why everyone wondered how I contracted it. It was my secret for as long as the disease has been in my blood, but I know exactly where it came from and when. I was a child age 7-11 with a very sick step father that was from Iran ( The Middle East) so it is contracted other ways besides tattoos, blood transfusions, IV drugs. It is a very ugly disease and no one, no matter what you have done in your past should have to pay any piper for it. I do wish you all well and prey you dont have to suffer as I have done. My problem is finding a doctor that will explain anything to me. A doctor that gives a damn. A doctor who knows what he or she is even doing. I suffer in pain almost 24/7 but I cant tell the doctor that or they will treat me differently and think I'm a pill seeker, even though I refuse to even take an over the counter pain medication. I am now trying to find out what to do about a blood test result that showed my Alpha Fetal Protein high. I am studying about it and it appears to be a tumor marker for liver cancer. The doctor told me not to worry about it and it is just high because I have HCV. Like I said, It's hard for me to find a doctor to help me with these kinds of questions. This is my first time in this discussion so I figured that I would come in completely naked so you dont think I am any different then you all.
"such a mysterious virus all the way around."
Ain't THAT the truth.
Stay blessed, and have a great Christmas finally without your house guest.
Ain't THAT the truth.
Stay blessed, and have a great Christmas finally without your house guest.
The debate about route of infection is always spirited around here. It's usually another unknown variable of Hep C; such a mysterious virus all the way around.
After my diagnosis in 2008, the "how did I get HCV" haunted me enough that I decided to trace my medical records for clues. The only risk factor I had was a blood transfusion when I was 2 days old in December 1954. In April 2008, I was stage 1/grade 1 and it seemed odd that I could have had HCV for those 53 years with so little damage so my mission began to try to put pieces of the puzzle together.
I ordered all of my medical records as far back as I could find them and I had nearly 100% success back to the early 70's, at which time I would have been 16 or so years old. Luckily I had had yearly physicals each and every year during my life so my records tracked pretty easily. What I found was that my LFTs were elevated ever since the early 70's and my WBCs were low all that time but my doctors never mentioned it to me. Finding elevated LFTs and low WBCs in my medical records from when I was 16 years old pretty much tells me I had already been walking around with HCV for a good number of years and that makes me pretty darn sure that the blood transfusion was the culprit. I lead an extremely clean life; not much of any alcohol, no drugs, lots of exercise, healthy eating and maybe that explains part of the reason I got by with minimal liver damage after 53 years of infection mixed in with a whole lot of luck. My true luck, however, rose to the surface when I reached SVR after 48 weeks of treatment...I am blessed.
After my diagnosis in 2008, the "how did I get HCV" haunted me enough that I decided to trace my medical records for clues. The only risk factor I had was a blood transfusion when I was 2 days old in December 1954. In April 2008, I was stage 1/grade 1 and it seemed odd that I could have had HCV for those 53 years with so little damage so my mission began to try to put pieces of the puzzle together.
I ordered all of my medical records as far back as I could find them and I had nearly 100% success back to the early 70's, at which time I would have been 16 or so years old. Luckily I had had yearly physicals each and every year during my life so my records tracked pretty easily. What I found was that my LFTs were elevated ever since the early 70's and my WBCs were low all that time but my doctors never mentioned it to me. Finding elevated LFTs and low WBCs in my medical records from when I was 16 years old pretty much tells me I had already been walking around with HCV for a good number of years and that makes me pretty darn sure that the blood transfusion was the culprit. I lead an extremely clean life; not much of any alcohol, no drugs, lots of exercise, healthy eating and maybe that explains part of the reason I got by with minimal liver damage after 53 years of infection mixed in with a whole lot of luck. My true luck, however, rose to the surface when I reached SVR after 48 weeks of treatment...I am blessed.
Thanks. To you as well. Hopefully your journey with HCV ends in SVR and a long life.
Bill
Bill
Concur. Method of infection is completely inconsequential. Not a one of us, regardless of our infection pathway was looking to have this virus.
Sorry if I angered you, sure wasn't my point. I won't argue that IV drug use is a major source of HCV infection and I agree it is likely the major contibutor today. My point is that the blood supply in this country was badly infected prior to testing methodologies developed in the 1990's and in those days transfusions were as likely or more of a culprit. Here's a study printed in the New England Journal of Medicine that shows the prevelance of HCV from blood transufusions decreasing as methodolgies improved for the screening of blood:
BACKGROUND: The most common serious complication of blood transfusion is post-transfusion hepatitis from the hepatitis C virus (HCV). Blood banks now screen blood donors for surrogate markers of non-A, non-B hepatitis and antibodies to HCV, but the current risk of post-transfusion hepatitis C is unknown.
"METHODS: From 1985 through 1991, blood samples and medical information were obtained prospectively from patients before and at least six months after cardiac surgery. The stored serum samples were tested for antibodies to HCV by enzyme immunoassay, and by recombinant immunoblotting if positive.
RESULTS: Of the 912 patients who received transfusions before donors were screened for surrogate markers, 35 seroconverted to HCV, for a risk of 3.84 percent per patient (0.45 percent per unit transfused). For the 976 patients who received transfusions after October 1986 with blood screened for surrogate markers, the risk of seroconversion was 1.54 percent per patient (0.19 percent per unit). For the 522 patients receiving transfusions since the addition in May 1990 of screening for antibodies to HCV, the risk was 0.57 percent per patient (0.03 percent per unit). The trend toward decreasing risk with increasingly stringent screening of donors was statistically significant (P less than 0.001). After we controlled for the method of donor screening, the risk of seroconversion was strongly associated (P less than 0.001) with the volume of blood transfused, but not with the use of particular blood components.
CONCLUSIONS: The incidence of post-transfusion hepatitis C has decreased markedly since the implementation of donor screening for surrogate markers and antibodies to HCV. The current risk of post-transfusion hepatitis is about 3 per 10,000 units transfused."
BACKGROUND: The most common serious complication of blood transfusion is post-transfusion hepatitis from the hepatitis C virus (HCV). Blood banks now screen blood donors for surrogate markers of non-A, non-B hepatitis and antibodies to HCV, but the current risk of post-transfusion hepatitis C is unknown.
"METHODS: From 1985 through 1991, blood samples and medical information were obtained prospectively from patients before and at least six months after cardiac surgery. The stored serum samples were tested for antibodies to HCV by enzyme immunoassay, and by recombinant immunoblotting if positive.
RESULTS: Of the 912 patients who received transfusions before donors were screened for surrogate markers, 35 seroconverted to HCV, for a risk of 3.84 percent per patient (0.45 percent per unit transfused). For the 976 patients who received transfusions after October 1986 with blood screened for surrogate markers, the risk of seroconversion was 1.54 percent per patient (0.19 percent per unit). For the 522 patients receiving transfusions since the addition in May 1990 of screening for antibodies to HCV, the risk was 0.57 percent per patient (0.03 percent per unit). The trend toward decreasing risk with increasingly stringent screening of donors was statistically significant (P less than 0.001). After we controlled for the method of donor screening, the risk of seroconversion was strongly associated (P less than 0.001) with the volume of blood transfused, but not with the use of particular blood components.
CONCLUSIONS: The incidence of post-transfusion hepatitis C has decreased markedly since the implementation of donor screening for surrogate markers and antibodies to HCV. The current risk of post-transfusion hepatitis is about 3 per 10,000 units transfused."
"I disagree with the "Boomers are Druggies" rationale. The single largest risk factor for us boomers was a tainted blood supply. "
I am a "boomer and was a"druggie", and didn"t recieve any blood products.
Not that it means a whole helluva lot at this stage in the game,its just time to pay the piper.
I am a "boomer and was a"druggie", and didn"t recieve any blood products.
Not that it means a whole helluva lot at this stage in the game,its just time to pay the piper.
Here is just one of the many stats out there.
From the Centers for Disease Control and Prevention
"What is the prevalence of HCV infection among injection drug users (IDUs)?
The most recent surveys of active IDUs indicate that approximately one third of young (aged 18–30 years) IDUs are HCV-infected. Older and former IDUs typically have a much higher prevalence (approximately 70%–90%) of HCV infection, reflecting the increased risk of continued injection drug use. The high HCV prevalence among former IDUs is largely attributable to needle sharing during the 1970s and 1980s, before the risks of bloodborne viruses were widely known and before educational initiatives were implemented.
From the Centers for Disease Control and Prevention
"What is the prevalence of HCV infection among injection drug users (IDUs)?
The most recent surveys of active IDUs indicate that approximately one third of young (aged 18–30 years) IDUs are HCV-infected. Older and former IDUs typically have a much higher prevalence (approximately 70%–90%) of HCV infection, reflecting the increased risk of continued injection drug use. The high HCV prevalence among former IDUs is largely attributable to needle sharing during the 1970s and 1980s, before the risks of bloodborne viruses were widely known and before educational initiatives were implemented.
No one is saying HCV is a disease of addicts. Statistics clearly show IV drug use was the predominant source of infection 30 to 40 years ago and remains so to this day. I don't know where your getting your information from but everything I have ever read supports IV drug use as the number one mode of transmission. I was told by Dr. Pearlman of Atlanta that in 1970 one out every thousand who received a transfusion was exposed to hepc. I just happen to be that one and at this point what the hell difference does it make. I'm not going to argue with statistics because I don't like how it sounds.
Trinity
Trinity
I disagree with the "Boomers are Druggies" rationale. The single largest risk factor for us boomers was a tainted blood supply. Any person that received plasma, whole blood, albumin, hemoglobulin injections, etc. prior to 1992 or so had a high exposure risk. I think the removal of HCV tainted blood in the blood supply system will have the long term effect of significantly decreasing the number of exposures. The White House Office of National Drug Control Policy (ONDCP) website show lots of information that would lead one to believe that injection drug use is much more common today than 30-40 years. The rate of new HCV infections is going down dramatically- thanks to a cleaner blood supply.
I get tired of people labeling HCV as a disease of addicts. There are more people that contracted this ailment from a visit to their local hospital then from a visit to their dealer in my opinion.
I get tired of people labeling HCV as a disease of addicts. There are more people that contracted this ailment from a visit to their local hospital then from a visit to their dealer in my opinion.
As in everything, certainly a positive attitude is a good place to start from when trying to heal. the kitchen sink may also help,however as I think you are realizing in this case a bunch of INF/riba is also in order.
all the best WILL
all the best WILL
What really interests me is the connection of the liver with strong feelings, particularly anger and courage/bravery etc. There are some interesting terms in English referring to the liver. "lily-livered" "a jaundiced view", " feeling liverish". Other cultures have similar and different expressions
In the middle ages the liver was considered the seat of the soul, and at other times the place for darker emotions
You probably won't find it in any modern medical text book, but I have no trouble believing that the body's ability to self-correct the myriad malfunctions (major and minor) that crop up on a regular basis depends, in some no small part, on the mental condition of the occupier of the body. While the virus may be dormant, or mutating, for many years, it struck me that it might be more dangerous when we go through periods of emotional stress, and this might explain the inexplicable differences that everyone experiences to both the disease and the treatment of it.
Mid - life is definitely an interesting time of life.
If it was pure physics chemistry and biology, then drug x applied to situation y would produce result z every time. But I see here, that doesn't happen.
I'm not about to suggest that you can think positively and the troubles go away, but I certainly feel that liver diseases, more than other sicknesses may need an extra dose of optimistic thinking to get the most out of treatment. The catch 22 is that treatment saps you of most of that!!
No ground -breaking, earth-shattering conclusions here, just looking around for any thing else cheap and handy to throw at it before the kitchen sink goes.
In the middle ages the liver was considered the seat of the soul, and at other times the place for darker emotions
You probably won't find it in any modern medical text book, but I have no trouble believing that the body's ability to self-correct the myriad malfunctions (major and minor) that crop up on a regular basis depends, in some no small part, on the mental condition of the occupier of the body. While the virus may be dormant, or mutating, for many years, it struck me that it might be more dangerous when we go through periods of emotional stress, and this might explain the inexplicable differences that everyone experiences to both the disease and the treatment of it.
Mid - life is definitely an interesting time of life.
If it was pure physics chemistry and biology, then drug x applied to situation y would produce result z every time. But I see here, that doesn't happen.
I'm not about to suggest that you can think positively and the troubles go away, but I certainly feel that liver diseases, more than other sicknesses may need an extra dose of optimistic thinking to get the most out of treatment. The catch 22 is that treatment saps you of most of that!!
No ground -breaking, earth-shattering conclusions here, just looking around for any thing else cheap and handy to throw at it before the kitchen sink goes.
(RG)
"I think the reason that more 40-50 year olds are detected is because we go to the Dr. more than 20-30 Y.O. "
---------------------------------------------------------
I got DX'ed when I was 50, getting a divorce and had to get life insurance; I barely passed due to my high LFT's. Go to the doctor otherwise? That's a proven way of getting sick. : )
Actually, when i went to the doctor due to the higher LFT's the doctor pooh-poohed my concerns about my LFT's because they were on the borderline of range. I insisted, but never heard back from the doctor that i was reactive for antibodies. That took 8 months or so before the CDC called me.
So far as some of the answers, no.... there is no test of way of actually proving when one was infected by testing the recipient of the infection. Quite often they are able to piece together multiple infections when people have acute reactions, but some of us are unaware of that acute reaction period.
So......"How can you date the time of infection?"
And yes........ you can date anytime you wish as long as neither party is married and you disclose. : )
best,
Willy
"I think the reason that more 40-50 year olds are detected is because we go to the Dr. more than 20-30 Y.O. "
---------------------------------------------------------
I got DX'ed when I was 50, getting a divorce and had to get life insurance; I barely passed due to my high LFT's. Go to the doctor otherwise? That's a proven way of getting sick. : )
Actually, when i went to the doctor due to the higher LFT's the doctor pooh-poohed my concerns about my LFT's because they were on the borderline of range. I insisted, but never heard back from the doctor that i was reactive for antibodies. That took 8 months or so before the CDC called me.
So far as some of the answers, no.... there is no test of way of actually proving when one was infected by testing the recipient of the infection. Quite often they are able to piece together multiple infections when people have acute reactions, but some of us are unaware of that acute reaction period.
So......"How can you date the time of infection?"
And yes........ you can date anytime you wish as long as neither party is married and you disclose. : )
best,
Willy
My prediction is, once we die off (Baby Boomers), the truth will come out. There is a lot more people that don’t know how they were infected than the numbers show.
I don’t buy into the whole 30+ year old IV drug use/Blood Transfusion theory. Yes, I know that some of us did contract it from then but I feel they are too quick to assume that is where we contracted it from.
I was an IV drug user 30+ years ago. I also had been a HEAVY DRINKER for the last 30+ years. I was only a F1. Since the Virus is constantly replicating and mutating preventing the liver from killing it, the lying dormant theory is pretty much “Blown Out of The Water” (I don’t remember reading an actual study proving it anyway).
This means for 30+ years, my liver was fighting HCV and my constant abuse. In reality, I should be dead not a F1. I have to look at this logically. I doubt that I have carried this for 30+ years. I think the reason that more 40-50 year olds are detected is because we go to the Dr. more than 20-30 Y.O.
Just My Opinion and I am sure most will disagree.
I don’t buy into the whole 30+ year old IV drug use/Blood Transfusion theory. Yes, I know that some of us did contract it from then but I feel they are too quick to assume that is where we contracted it from.
I was an IV drug user 30+ years ago. I also had been a HEAVY DRINKER for the last 30+ years. I was only a F1. Since the Virus is constantly replicating and mutating preventing the liver from killing it, the lying dormant theory is pretty much “Blown Out of The Water” (I don’t remember reading an actual study proving it anyway).
This means for 30+ years, my liver was fighting HCV and my constant abuse. In reality, I should be dead not a F1. I have to look at this logically. I doubt that I have carried this for 30+ years. I think the reason that more 40-50 year olds are detected is because we go to the Dr. more than 20-30 Y.O.
Just My Opinion and I am sure most will disagree.
Pretty much as others have said, there is no way, unless you happen to catch it right away within a few weeks of exposure - AND you happen to be one of the 20% who experience some symptoms (80% do not) AND some astute doctor happens to test you for virus and finds it.
Other than that, think back to the things you did in your life that were risky. As Trinity said, the bulk of the people on this site are in their 50's or 60's - ex hippies. Drugs were just something you did then.
Personally, the only risky behavior I've ever had was some IV drug use for about a 6 month period back in ... oh.... 1976 or so?
Other than that, think back to the things you did in your life that were risky. As Trinity said, the bulk of the people on this site are in their 50's or 60's - ex hippies. Drugs were just something you did then.
Personally, the only risky behavior I've ever had was some IV drug use for about a 6 month period back in ... oh.... 1976 or so?
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