Here is a curveball, along with an article regarding the highprevalance of HCV in alcoholics. See link below.
This is an issue that I have discussed with several HCV doctors, with no clear answer to my questions. The article, as well as several others I have reviewed lately, indicates the abnormally high number of heavy drinkers, alcoholics, etc. that are HCV positive. Often this is within populations with no known risk factors, and no past IVDU history. My big question, which I have wondered about for years, is WHY does this seem to be the case. Why would heavy alcohol users seem prone to developing HCV??? Unless, of course, they are all lying, and happen to also have risk factors which they now deny. I think there is much more to this mystery, which still baffles the medical community.
Along with my concerns about persistent HCV after SVR, is another concern which many of you have responded to in the past when I have posed this issue. Could there be HCV transmission in the general population, on a much larger scale than suspected, that is not in the bloodstream or liver. In effect, a 'latent' tissue, or glandular infection which remains latent or suppressed, until a major stimulus causes it to 'explode' into the bloodstream. This theory would help explain the great numbers of HCV cases worldwide that have no known risk factors.
Could there be a somewhat 'dormant' viral infection in a large portion of our population, within organs like salivary system, sexual organs , membranes, CNS, etc.??? (cont. below)
This would mean that an immune suppression event, major illness, or extended alcohol abuse might cause the 'latent' controlled tissue HCV infection to overwhelm the immune system, and allow it to be expressed in the bloodstream and liver. This might fit the pattern of many HCV positive people, who discover that they have the disease, but have no clear risk factor in the past, other than maybe a period of extreme alcohol abuse. It would also explain why alcohol is a major problem to those with ongoing HCV in the blood as well. It continues to 'explode' production of HCV, and to overwhelm immune defenses, so that fibrosis, and cirrhosis, and eventually HCC develop.
This is the only logical answer that I can come up with if the alcoholics studied truly do not have a higher frequency of risk factors than the HCV-negative alcoholic control population.
"In effect, a 'latent' tissue, or glandular infection which remains latent or suppressed, until a major stimulus causes it to 'explode' into the bloodstream. This theory would help explain the great numbers of HCV cases worldwide that have no known risk factors."
Personally I think the reason so many hep c cases have "no known risk factors" is because many infected from IV drug use -- still the leading cause here -- aren't honest with their treatment doctors. The second reason is I think is that sexual transmission (or intra-familial transmission) may be underestimated. Sex and drugs, drugs and sex, two topics people tend to keep private. No, have no studies on this, just an opinion.
Oh, and just to be clear, I'm not talking about anybody here, so please do not respond personally :) I know there are other less conventional modes of transmission as well. However, DD, with respect, I don't think your "exploding" viral into the bloodstream is one of them.
Tend to agree with Jim here. I think the percent of those that are honest about how they have contacted HCV is very small. I just can't subscribe to the osmosis method of HCV transmission. Perhaps like Jim said there is more sexual transmission than originally thought, but I am not even sure of that. I still think the blood to blood contact is how we all got it. Sorry, DD.
When i was younger and tougher i did a lot of construction work, and my fair share of ironwork. If you didn't leave the job site at the end of the day with some good size cuts and nicks on your hands and arms then you must not of worked very hard. And you know that maucho image that men have, you didn't stop working over a boo boo you just grabed a rag wiped the blood off, tossed it aside and kept working. I often wonder now how many people that used that same rag that i tossed got infected from my blood. There are so many ways for blood to blood infections that we don't even think about at the time. But i don't think that explodings viral in the bloodstream is one of them. But thats only my thoughts.
Not sure that thier is a cooralation between high drinking and non-blood contact. The highest population of Hep C infected are ex or current drug users. I have heard this number is as high as 70 to 80 perect of those infected. It is possible that they are also heavy drinkers. I have never met a drinker who did not have another risk factor related to blood who is infected with hep C. I think it is clear that the highest risk factor for getting Hep C is via blood contact. What you do see is a coralation between heavy drinkers and advanced hep c ( approx 20 percent). This is the same percentage of people who will get advance Hep C.
The first thing we found out at any new job site was where the nearest liquor store was. And the owner would always keep plenty of quarts of beer on ice for us. And when they would bring a new guy on the job all we had to do was look at his hands. We could tell how long he would last.
I'm still in the belief that it's blood borne. Alcohol would negate that, unless you have a bloody mouth and share a cocktail with someone with a cut on his lip?? I do believe that alcohol definitely puts fuel on the fire. I also don't believe that the sexual transmission factor is that big of an issue. I've know too many people in long term relationships where the partner/spouse, never turned positive. The exception to the rule, I think is with anal intercourse w/o a condom. In that instance, I could see the sexual transmission factor to be greater.
I do believe there are a handful of people out there who are not honest with their drug use although I don't think all those that can't figure it out fit in that category.
As mentioned before there are other possibilities to look at such as dentist office, nail salons, dr offices that do minor procedures in their offices, remember not all health professionals are careful. Look at what I just experienced a week ago. There was a nurse (very old) who wiped a spot of my blood away with her bare finger. (She was reported by the way) There is also the chance of contracting hepc via transfusion even now. There is no way to test if someone gives blood within the "incubation" timeframe of being exposed. there is still a 1 in 121,000 chance of getting it through a transfusion. With all the knowledge we know I still got it from an in utero transfusion when I was pregnant in 2002. We went through 16 of them my doctor is sure this where it came from because in 2001 prior to a transfusion with another pregnancy I was tested (I didn't even know) and was negative(We investigated all my medical records) So there are still many many possibilities out there. Alcohol, I think, is just one common denominator they can determine. They haven't found the other one yet.
But this is still all new to me so these are just my humble thoughts.
John is right, through the 70's and alot of the 80's we just didn't worry about blood as much. Just a quick story, my friend visited from another city; getting ready that night forgot his razor; used mine. We would never do that now. At the time I did not know I was HCV, thank goodness he is negative today.
As far as alchol, had I not been such a heavy drinker; I'm not sure I would know now that I have HCV. The accelerated alcohol use with the HCV is what made me sick. I don't know exact numbers, but there are alot of non-drinkers that have HCV, alot of heavy drinkers w/cirrosis that don't have HCV; and every other combination in the book.
If you look hard enough you'll find your category if you really want to; I still don't really know how I got. Didn't shoot drugs, but did believe in "sex, drugs, and rock-n-roll.
hmmm, generally speaking, would practicing alcoholics be the "go to" population for personal honesty, forthrightness and clarity? dunno about that. I believe many of them would probably be less than forthcoming about any IV drug experimentation, hence the skewed numbers. Alcohol use, even in excess, is much more accepted in most societies.
I know I've said this before...but I've gone to so many hep c boards and I've spoken with or read so many posts from hep c patients on boards or hep c support groups....and I've never spoken to one person who thought they might have contracted this sexually. There have been a few that have said they didn't know how they contracted it, maybe there's something to that.
But then I've spoken with or heard of so many people in relationships of all kinds and marriages...who have significant others' who never contracted it from their partners. Lots and lots of couples out there where one person has it and the other one doesn't. I just don't think it would bear out that there is some significant probability of contracting this sexually if this is the case for me and so many people I know. Maybe I'm dead wrong about this, but it doesn't add up to me. I've spoken to a few hepatologists who feel as I do about this. Until I see a lot of evidence to the contrary, I think this is for the most part a blood borne disease.
I got my hep C most likely in san jose,ca. I did hang out with many from the city. I got mine most likly in 77 or 78. IV drug use was the reason and I was just kid at about 16 years of age or so. I am genotype 2a what you is your geno?
I'm a 1a, 22/48 pegasys/1200mg copegus. Starting vl 1.05mil, undetectable at wk 12. Started at stage 3/ grade 3 w/fatty liver.
I was 19 years old hanging out in North Beach and the Tenderloin of S.F. singing in punk rock bands. So you know the scene I'm talking about. I'm just lucky I'm not already dead, and at least I didn't get HIV. It was running rampant at that time. If we only knew then what we know now, aah it wouldn't matter; I have no regrets. Better than looking back bitterly at a boring uneventful life. Peace
You mentioned that you probably got infected in San Jose. Do you still live in the Bay area? I am in the Santa Teresa area. Hubby works for NASA Aimes research center( Mountain View ) Just curious. (((( Sue))))
When I was first diagnosed with HCV I read some where that it was traced back to blood samples from WW2. Does anyone know anything about how far it has actually been traced back? Is it simply because we don't have acurate blood samples prior to WW2 to test? How long has this monster really been around? Better yet, where did it come from?
I have to believe if only for my own sanity that it is blood borne only.
What blows my mind as to transmission is why more regular IVDU's aren't multi-genotype/subtype/quasispecies-infected. Honest to god I had one single iv stick w/ two users, so I guess my viral pool was their viral pool. (Venice Beach, '80-82, 2b, f 48y/o 1/1 13/24)
Of course so many people shared $100 bills; why am I not multi-infected from that?
I had Hep B in the late 70's,I was a mess - got clean and sober and was tested for everything, so I thought. Took really really good care of myself. My doctor periodically tested my liver enzymes - all was well until earlier this year when my daughter organized a blood drive and was so happy and excited - then the Red Cross called and said she had hep C and all of our lives changed. I passed it to two of my four children. The 2 ex-es have been tested, they are OK. I dont want to be on this journey but here I am.
I am lucky and still shocked that i did not get HIV. My bother still lives in the SF tendorline. I would say he went from being a carpenter to being pretty close to homeless. Drugs of course. Just not the IV type. I am glad you are out of the dark side of San Fran..
Responses very much appreciated!! I enjoy the input, and opinions. Again, my comments were very speculative, and by no means presented as a firm belief...only a suspiscion...and an explanation of an odd set of statistics. Bear in mind, I was not saying HCV transmits to the blood by sexual contact, or other tissue contact....only that it might remain in compartmentalized tissues, as a latent infection. Only in extreme cases (the heavy alcoholic) would it then cross the blood barrier. This was my speculative theory...and I am not at all claiming that this must be happening. Only a potential, possible answer to the puzzling fact that many alcoholics seem to be HCV+.
Of course, they may have become infected through typical blood to blood contact, and might have a tendency to be less than truthful about IVDU issues, etc. I agree with all the above comments, but the answers to this question are not at all clear, as the article points out. There are lots of things relating to this virus that still seem to baffle the researchers, and the HCV medical community. One by one, we will want to find the 'exact' answers to all of them. I remain an optomist...but still have lots of questions and concerns...based on my own experiences, and observations of others out there...along with what I am reading in the past few years.
I am really hoping that research proves that HCV is 'gone', eradicated entirely from our bodies after we get a solid SVR, and that the odd findings that have been cropping up in research studies, are all explained by some 'viral remnant' or 'viral memory' type reasoning. Maybe there is no cause for concern at all. But the jury is still out.
And on some questions (such as tissue to tissue transmission) the jury is not even in the courtroom. There are no real questions being raised around this issue at all, so maybe it is not really an issue.....at all. Let's hope.
Wow, lived in Santa Monica then Venice, Main & San Juan, though a bit later, maybe passed a few of those Franklins with ya. Love Venice, though Ghosttown seems to be getting pushed farther and farther out of the city. wow.
I have to say I'm a product of the seventies too. Sex, drugs, rock, and roll. But I have to say I knew when I had viral hep. I had had Hep A when I was 12 so it wasn't hard to see or feel the same signs. What's is bad is that I was told non-A-non B and inactive after everything was over with. So 6 yrs after that turned up with kidney disease. Never once have I been told until now that Hep C causes the kind of kidney disease I have, so 30 yrs later need a kidney. And there's only out of about 1 of so many thousands that develop kidney disease, what's so bad these drs knew I had did drugs my arms and veins were destroyed but no one every mentioned checking for the Hep again, till started testing for transplant. Then got shock of my life. They told me I would be better off on dialysis for 15 yrs, then transplanted for 5, which are the odds they give with hep c transplants. I know I'm rambling but sometimes especially when I'm reading the other posts I feel so bad, who could have known what could come of all that, we were young and immortal. So now I'm fighting with everything I've got and it sounds like alot of others are fighting too. Hope we all do good. Just having small pity party. Take care Linda
Hi, your post really touched me. As for me, I'm done blaming that silly kid that I was, for the most part, cept when I fall off my stool. Kinda non-productive and I feel bad enough sometimes without adding my past to it the equation. I just didn't have many tools or coping mechanisms back then, that's for sure. I know I sound like I'm giving us all a big giant "Pass Go" ticket, but I do think that back then...they just didn't know what they know now about some of the drugs we were experimenting with. Well heroin maybe, but I didn't like that stuff - hated throwing up.
Not that the extra knowledge would of stopped "baby me", but it sure might of slowed me down a bit, specially the hep c. Do you remember when so many people were saying that coke was the "super achiever" drug? The drug of champions? Fast forward to crawling around a carpet looking for specs. Oh well, past is history, future is fantasy, no time like the present. I hope you get some answers youre looking for, and that you feel better soon.
San Francisco 1969-72. Haven't been back since. I too am surprised I am not co-infected. I am at 20 weeks and still in the closet. Furthermore, if it becomes so obvious that I am "ill" and I must expose myself, I will hide under the blood transfusion I did have in 1977. So much about being honest about IVDU. It is not an easy thing to share with others. I am grateful for this forum, because I find honesty much easier on my psyche. Still, I am wrestling with telling my two boys who live in town. I don't see them all that much, and they have no idea (about the hep c or treatment or IVDU). How have others dealt with adult children who have no idea about your youth? (BTW - both adopted so not an issue for them to be tested)
I had four blood transfusions last year and use that cover with people like my PARENTS and CO-WORKERS (well they think I'm on chemo for blood cancer LOL). I mean I tell who I want the truth and that is just FINE.
Sad that we have to endure such a stigma - prices we pay for our mistakes of youth. Like none of them ever did anything that was a bad idea...I am sure.
People need to realize it's not a WHERE we got it thing or HOW we got it - just how lucky we are that we found out that we had it so we can fight to cure it. But of course..out here on Hepper Island it is a lonely old place sometimes.
My kids know because I am in a recovery program, though I do admit it has been easier for me to let others assume that the recovery is from alcohol alone. I tried everything, in my veins, up my nose, etc. And had tattoos done at someone's house - I just cringe at the risks I took. I've had nothing in my system since 1983, the drugs were for a very short time in the late 70's but obviously thats all it took.
The most difficult "talk" I had was with my disabled son, who has mild mental retardation as well as physical disabilities. My heart broke when he said he thought it was weird that grandma didnt have hep C since we were born with it. I explained to him that he was born with it it because he got it from me, and I wasnt born with it, I acquired it from using drugs. He definitely gets it, he just hugged me and said he was so glad I wasnt using drugs now.
Actually as a recovering 24/7 alchie- I certainly agree that when I was an active alchie I pretty much didn't separate lies from truth, but I'm not sure anyone in the general population - for instance someone who just had a short span of poor judgement in their youth- would be more likely to be forthcoming about it. After all if they've mostly led a decent life- it might be a little harder to admit to loved ones or anyone the mistakes once made. I know although I did every drug in the book from 1970 to 93 and then again for '00 and '01 I did only shoot once- yes with a shared needle. But particularly if you spent most of your adult life in the lifestyle like I did- you realize you're probably not suprising anyone by admitting IV use, they may even assume it, you've probably already admitted to things some consider worse....and IV use may very well not be what you consider one of your darkest secrets.(Don't ask) Just my theory.
As far as the relativity- yes alchoholics probably have more reasons for blood tests:toxicology after accidents and injuries through violence, hospital visits from poor health. I found out through 1 of the may trips to detox. There certainly seems to be a higher percentage of people I've met in AA that have hepC. A drug is a drug. Alcoholics are more likely to use high risk behaviour such as the boody straw for snorting. But the added stress on the liver - for may years at 140lbs I drank over a quart and a half a day of vodka outta the bottle (just to function and go to work, not on party days, lol). I should be dead. But my understanding is that the liver just can't handle both the hep and the toxins like booz. It's like tring to climb a ladder with a suit of armour. Hence (possibly) more rapid heptic related sx pre trearment. Then of course genetics come into play and who knows what else. My liver shoulda fallen apart years ago on it's own. I've met people who drank less, don't have hep, but developed more liver damage. I think the mix-with alcohol is just what my dr said - it's like giving the bad guy(the virus) a daily hit of meth so it can REALLY put some emnergy into ripping up your liver.
Now I'm trying to deal with whether my dad has it(11/27 Hepatitus C post) and he wasn't a drinker but may be 'collateral damage' from my past.
It seems in one way or the other we are all paying for the sins of our past. The collaterol damage just might be the hardest thing about it all.
Whether it be dancer telling her son (which just made me cry) or strator with his dad...even those of us who have no infection of our family have to deal with the collaterol damage of our disease on them as well.
Such a hard price to pay. But then it was ME using as much as often as I could and not them...so do I feel guilt yes. I dont think it will ever really go away...
I am just glad that my children have forgiven me and knowing everything that I did - it helps them make WISER choices in the future (they both tested negative).
Maybe that is the good in all of this, I hope.
(Praying for your dad strator. I hate this disease it sucks)
I was there, Mabuhay was my favorite. Had a band called "Bad Habit" and 'GDMF", Bad Habit played Mabuhay more and with GDMF we hung at The Sound of Music in the TL more.
If you're female we could have even had sex at the Mabuhay, in that closed off room when you first walk in. When you were inside you could see Broadway from the window; but on the street it was mirrored , my guitarist and I used to have a contest. lol. Looking back "how sick was that". Peace
I have been in the Hep C closet for many years. I am on week 20 of closet treatment. Anyway, I am not sure what good it will do to tell your sons how you got this Hep C. My adult daughter knows that I got this from IV drug use. But that is because she has always been told of my past. Anyway, I would stick to the blood transfusion story. Good luck
Treatment sucks! Sorry... I need to remember that worst things can happen to someone. It is not really that bad..
Hi, sounds like we went to some of the same parties. anywhoo, this whole thing about certain people advancing in liver damage and others not is so multi-factoral. Women "tend" to advance less quickly with hep c, according to some stidies...estrogen is supposedly a protective factor...that's why women will tend to progress at a higher rate once post menopausal, and HRT can help slow that down, again, according so some studies. Then there's the age you contracted it, your genetics, your lifestyle, so many things come into play. And for a real rabble-rouser of an argument, I think that using herbs and supplementation can slow down inflammation in some people, so there you go. Just my thoughts.
Just curious how many people out there -- if they're being truly honest with their physicians -- really have no risk factors and have no idea where they contracted HCV. I've been told 40% of dx'd Heppers have no risk factors.
Being truly honest, my risk factors seem to be visiting the dentist (and probably not as often as I should have), having my ears pierced once or twice in my life, and once, in grade school, I poked a hole in my finger with another little girl, and we pressed them together so we could be blood sisters. Stupid, I know. My drug use has been limited to occasional cannabis ingestion after starting tx. Never tried anything else. Alcohol intake was always social and sporadic.
I do wonder about the possibility of sexual transmission, but my husband, who I have checked annually now, is fine. I had my ex checked. He's fine. I have a short list of lovers.
So the truly scary thing is (following DoubleDose's musings), for people who truly have none of the listed "risk factors" or incidents that they can point to as a possibility for contraction, where on earth did it come from? And how many people are there out there that have no idea and would never be checked for it because of that?
I've read there's a possibility of contraction through a cat scratch, though it seems slim. They seem to have ruled out the possibility of contraction through mosquito bites. My husband's own theory is that I might have gotten it from maybe a restaurant worker, maybe a sushi restaurant, thinking that there's a greater possibility of a chef getting cut working in that type of food-handling.
Who knows? The point is, I really, really hope there's no latent reservoir; that there's no way to somehow bring it upon yourself through alcohol alone; and I really hope that it is truly blood-borne. There's just got to be an explanation. If the numbers of clueless people are truly 40%, it just makes me worry that maybe there's another risk factor out there that no one really knows about.
All your posts have touched me. I too am guilty as charged. Sex, drugs & rock & roll. Late 70's, Seal Beach mostly. Hubby & I lived right behind Clancy's Bar if anyone knows the area. When the bar closed everyone would stumble over to our place and party. Lots of white powder. Amazingly, we are still married! The Dr. told me as well that those hundred dollar bills were big carriers, along with straws. Course the needles may have come in to play as well.
The interesting thing is, I am not sure that is how I got it. It certainly SHOULD be the reason but I have very little liver damage. My hubby is 1b and has extensive damage. I am 1a. Does that make any sense to anyone? It seems to me we should both be co-infected and have equal damage. As stated in earlier posts, I also had a blood transfussion and cared for my father-in-law who had Hep C.
It's nice not to be alone on that island. I wish everyone well. We are the survivors! We will beat this!
Hi, gotta qualify myself here a little, when I said that active alcoholics are probably one of the least likely populations to fess up the truth about any IV use, I meant (for these purposes) to the docs and/or any people asking in authority...who might need to know this kind of information for statistical analyses, etc. But yeah, they are not the only people likely to go into denial about these types of issues, at least to these authorities...many people do. Many of us here in No. America and Western Europe are still working out Calvinistic religious credos for the most part, and it's resulted in a lot of shame and guilt and blaming, I think...(let's not forget the catholics and a number of other religions)...which might be one of the reasons we are attracted to a lot of drugs and alcohol in the first place. The "downside" of religious teachings in my book.
Now I'm talking about organized religion for the most part, not sprituality. Please, this is just my opinion and if I've offended your religion, here's my pre-apology. I'm just tired of being shame-based in my attitudes, bought into that for too long...I'm presently trying to work that stuff out of my psyche cause it isn't doing me any good, I feel. I fully belive that I can adhere to personal moral prinicipals without a lot of shaming, but of course I'm only speaking for myself.
Back to my point and I do have one...I'd even venture that when and if they give some people those questionnaires dealing with how they "contracted" the disease...even if they are anonymously taken, that certain people lie on those too, it's such a hard thing for some people to admit.
I might add that this is not a criticism of people who feel that they must "pick and choose" who they admit these things do. Sometimes you need to lie about these things in order to be able to negotiate situations more smoothly, to protect yourself and other people.
But yeah, I'm mostly honest about these things, these are personal decisions and sometimes it has to do with people that "need to know" or not. Small children might not be able to process this info very well, it's a case by case thing. It's been said and I agree with this, who cares how you got this except for researcers.
That's old information, it's how we are dealing with it now that counts.
BTW, odd how many Californians are on this board, Californians who know who "The Dead Kennedys" were.
Wow, this is a great thread. Sounds like we have all had similar experiences. A bunch of people caught in the same fabric of time. I too shared a needle with others, even though it was only a couple of times....during the summer of '75 in Alaska. Seems as though everyone was doing the 'coke' thing up there. Well, I have finally had my biopsy and my results are grade 2, stage 2. I am a 2b, vl 28,243 and my doctor says I should treat since there will not be much coming down the pike (for another 5 years). She thinks it is a 'slam dunk' (her words), for me to treat. I am thinking about starting treatment this march. But first I want to lose about 25 pounds, before I treat. Has anyone heard it is better to not be heavy before treatment? I am not obese just overweight, BMI 28.
Hi, as for my opinion (and I guess you can see I'm giving it freely this morning) I'd opt to have a little extra weight come treatment time. From all my reading and questioning, etc. I've come to the conclusion that people deal with stress and food in different ways. There are the people who eat even more when stressed, and the people who eat way less. I'm in the latter category, the minute I get depressed or stressed or upset, it's very hard for me to eat. I have a big feeling (though of course I'm trying not to program it) i'd be one of the ones who had a real hard time eating on treatment, which isn't rare. The stuff is supposed to effect your tastebuds, along with the fact that many people get nausea, and it's hard to eat when that's going on.
So I plan on packing on an extra 10 pounds at least before I start, and I've always been a good weight for my height... I don't like that anorexic starlet look, especially when middle aged. Tom Wolfe called them "X-Ray Women", not for me. It's not unusal for people to lose 20 pounds or more on treatment. I know several people who lost more than 40.
That's not to say that there aren't people who actually gain weight on treatment, perhaps they are way less active and the boredom makes them eat while on the stuff.
Packing on some 10 or 15 pounds before treatment is different than being obese before treatment. I have read the meds have a harder time getting through a lot of fat, (also the fatty liver issue) so it's a question of how much to me. Also, if youve been very overweight for a long time, your metabolism is probably different than if someone just packed on some extra weight before treating. All these issues should probaby be discussed with the professionals in charge of your treatment of course. Just my take.
Oh, and I don't have a flat head, for those concerned, it's nice and round like Charlie Brown, with Lucy hair.
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