Age of hepitus C

   My GI doc says my Hepatitus (hepatitis) C is very old.  Have they always been able to determine the age and if so how close can they get?   I asked him if mine is 37 years old and he said probably, in which case I can pinpoint it to my one and only i.v. drug use.  I know the date as we were listening to the new "Sticky Fingers" album by the  Rolling Stones.  Is this possible?

[fretboard]

I forget the actual rule of thumb that they go by, but it works something like this.  They get the first possible year of your high risk behavior, they then add a year to it and that's the timeframe that they use.  My doctor once told me that I had it for over 35yrs.  I thought that was ridiculous, but then I came across the method that they use and I thought, well they have a guess and I have nothing.  To me, at least in my case it really doesn't matter that much how I got it or when, but what I'm gonna do to clear it.  later  

[btsmith]

   In my case it doesn't matter anything as they are not going to treat it and I can trace it to the exact person who came out of that Haight-Ashbery scene.  If yours is that old, as I understand it, then you had it before it was even called Hepititus C.  Has the length that you have had your hepC make it any worse than someone that has had it for ten years or are there too many variables?

[fretboard]

This virus is so complex and baffling, that I have no idea what to expect from tx.  Yes some studies say that the longer you've had it, the harder it is going to be to get rid of.  
I don't care much for studies b/c I've been on this forum for a few months and almost everything that I've read about has been wrong.  Maybe not wrong, but others who have tx'ed didn't fall into any study area, hope you know what I'm saying.  later  

[desrt]

http://vir.sgmjournals.org/cgi/content/full/85/11/3173

As far as the age of the virus goes, the above article seems to trace it back over 100,000 years. Personally, I can pretty well pinpoint my exposure to 1973 and as of 2001 my biopsy showed minimal damage so I've never trusted doctors opinions basing how long you've had the virus on disease progression.

[Trinity4]

The longer you have the disease the the greater the extent of  liver damage.  Someone who has had the disease for 10 years as opposed to 35 years generally does not have the same degree to damage.  Hepc is a very slow progressing and there are exceptions as with any disease but that is a gauge used by most specialists.  The only accurate way to determine you liver health is to have a biopsy.
Trinity

[btsmith]

   Yes, I got the results of my biopsy last friday and found out they are not going to treat.  I am a little ticked and only reason I am trying to trace it, for sure, is that maybe the -&*$#@ I got this from could buy back my second mortgage for me.  Too me it is no different than giving somebody aids, if they know they have it.  He teaches school now and has some of the best medical insurance in Oregon.  There have been no transfusions etc. for me within 15 years of 1971.  Fretboard I do know what you are saying.

[Trinity4]

This virus is so complex and baffling, that I have no idea what to expect from tx.  Yes some studies say that the longer you've had it, the harder it is going to be to get rid of.  
I don't care much for studies b/c I've been on this forum for a few months and almost everything that I've read about has been wrong.  Maybe not wrong, but others who have tx'ed didn't fall into any study area, hope you know what I'm saying.  later

That's a pretty bold statement.  Can you please expound on this?  If you feel the info shared by those that have been through tx or are currently tx'ing, unlike yourself at the moment is inaccurate, why do you continue to post?  If you have gained more credible information through any tried and true methods, please share it with us.  

fo·rum [ fáwrəm ] (plural fo·rums or fo·ra [ fáwrə ])


noun  

Definition:
  
1. place to express yourself: a medium in which the public may debate an issue or express opinions, e.g. a magazine or newspaper
2. meeting for discussion: a meeting to discuss matters of general interest
3. Internet discussion group: an Internet discussion group for participants with common interests

Yes, you are entitled to your opinion, just like everyone else.
Trinity

[Marcia2202]

I think I have had since 1983 (25 years), but I could have had it between 1981 - 1988. If you only had one risk factor in your life, than you can pinpoint it. My risk factors are many, from a tattoo, dentists, labs, rhogam shots to trying IV drug use. My doctor could not be helpful in determining when I got it. I myself think it was in 83, as I got sick with what I always thought had been food poisoning. The symptoms are the same as acute hep c.

To your sentence:

'In my case it doesn't matter anything as they are not going to treat it and I can trace it to the exact person who came out of that Haight-Ashbery scene.'

Just wanted to ask, if you meant that they are not going to treat you, and why?

Marcia

[fretboard]

I don't think you understand what I said.  What I am saying is that most of what I read, doesn't hold true as far as real life cases go.  Is that ok with you?

[Andiamo1]

The rate of fibrosis progression depends on many variables: your immune system, the way in which you develop scar tissue, diet, alcohol consumption, other health problems, age which affects your immune system and the genotype of the HCV you have.  I am sure there are more factors, but that is all I can remember.

Studies only give you an idea about probabilities of what might happen to you. Although they are not absolute in their predictions, they are worth using as input to your decision making.

You mentioned that you are not going to treat; why not?  Did you have a biopsy?

You should see a hepatologist that is very familiar with HCV before you make any decisions about treating.

Good luck with all of that.

Eric

[Trinity4]

Sorry, don't understand what you mean either  Much of what I have read on this forum for the last 9 months has had a direct correlation with real life cases so I guess it's just a matter of interpretation.  I have derived a tremendous amount of useful information by some very knowledgeable people and each of us has an unique circumstances but we all have common threads when it comes to tx.  
Trinity

[fretboard]

No worries.  I like reading studies, but I also appreciate when someone who has actually gone thru tx shares their experience with me.  Even if they just share their experience on this forum and I don't interact in any way, I still get pieces of useful information from their post.  God Bless

[btsmith]

   I didn't mean to get a war going here.  I said they are not going to treat, not, I'm not going to treat (it's in 2 different posts by me).  My liver is not in the best shape and I am bipolar. They say treating it would not add a significant extention to my life (I guess).  I had 3 specialists, each saying their specialty was causing my anemia. I went with the hepc causing it, yea, me I'm making the calls in a sea of doctors.  I am so confused and like this post on telling the length of the disease, read it and you'll see why.
  When I asked my G.I. doc if my disease was 35 years old he said "probably" which translates to me as ABSOLUTLY, POSITIVELY, UNAQUIVICABLY, YES.  It is pretty bad how they won't stick their neck out.

[btsmith]

   This forum is kind of a microcosm of the medical profession that I have been through the last year with the exception it hasn't cost me $20,000 (and I have insurance).  I start off with the idea that I'm getting some answers only to be drown in the end in a sea of confusion.
   I finished up yesterday with all my test results and the diagnosis, what to do, etc and then noticed this morning I was cooking my breakfast without the burners turned on.  Maximum sensory overload.  (true story)

[Trinity4]

Just want to say sorry you're having such a hard time with things. I sense the frustration and deservedly so.  Sometimes, we get on the doctor train and can't get off.  It's just keeps going around and around and when it finally does come to a stop we're no better off.
I have a son who is bipolar and it's been heartbreaking at times to see him deal with his illness knowing there wasn't anything I could do.  I hope you find some resolution to the problems you are facing and perhaps some good things will roll your way soon.
Take Care
Trinity

[medicmommy]

Sooo...what you're saying, is you like your eggs sunny-side up?LOL and you are the energy conscious type....(Yeh, that's the ticket...)LOL((((((((((((((((HUGZ)))))))))))))
I've got my own theories on the relationship of the viral load count and the communicability of the hep (the higher the count, the higher the chance of transmission.).  Also on progression, no matter length of time the hep c has been active, and the person's general immune system status (If the person is generally healthy with a strong immune system, the Hep C has a hard time advancing...If the immune system becomes very weak, the Hep C gets a toehold and accelerates...) ...I'm still researching, but I think they are plausible...                 ~Melinda

[btsmith]

   Energy conscious?  I started with a simple post.  16 posts later, two arguments, a wealth of knowledge, that I don't understand, and truly wondering if some of these posts are put their for fun,  that is the reason I forget to turn on the burners.  It has nothing to do with being bi-polar as the are great at abstract thinking.  It just sounds exactly like my doctors. (and a touch of one upsmanship).
btsmith

[meki]

I only know that I didn't have HCV in 1991 to 1993 (multiple testing as I was a volunteer for a Fire Department as an EMT)

But I know that I had it 2 years ago... Scary - because Well heck - I guess it really doesn't matter.

If I can get it --- anyone can get it --- and that means ANYONE.

So no worries about where or how long - only how much damage you have now --- and if you can get rid of it --- or stop your damage from happening.

Hugs,

Meki

[Marcia2202]

I totally understand your confusion. The subject of HCV is entirely complicated.

Opening a thread is more or less like starting a discussion, so one never knows which way it will end up. There are so many opinions on this subject and it is not just black and white.

As to a doctor being able to tell you exactly how long you had the disease, I seriously do not think he can, unless we ourselves can pinpoint the only event we could have been infected. If there are multiple possibilities, it becomes a whole guessing game..

The disease progresses differently in every one and there is just no way to tell. They cannot measure it...

Marcia

[btsmith]

  Thank you very much, now that wasn't hard was it?  Without sounding "preachy" and all, many people like myself are just looking for some help.  We don't have the medical background and forums like this are better than spending a half a day googling around the world looking for answers.  I feel some of my doctors have the philosophy of "confuse and conquer", which insures them of alot of repeat business.  Somebody has got to be on the side of the patient.
btsmith

[fretboard]

Just so you know, I often post alot of examples off of studies,  however if you go to the one that I was thinking about when I posted, it wouldn't be very encouraging.  When you've had HepC as long as I've had it, when it comes to studies, sometimes it's just better for me to focus on this forum.  There's a study that says if your VL is high then you have a harder time on tx or reaching SVR.  That has not been the case, at least as far as this forum is concerned.  Also, I know a lady who had a VL of 17 million, her biopsy was between a 2-3, her ultrasound was between a 3-4, she told me that she was in transitional cirrhosis.  She is currently in a telaprevir study and is doing very well, she was UND by her 12th week.  Sure the studies, across the board may be accurate, but this virus is extremely individualistic.  If you are being denied tx because of your anemia that seems like a real shame.  I mean can’t they do anything beforehand to make it better, and then let you tx?  God Bless  

[btsmith]

   You know when we first posted,  I was satisfied with that answer and it made sense to me.  I was willing to go with that.  When your told they are not going to treat, all of a sudden hepC things aren't as important as they used to be.  The bipolar thing is the main reason for not txing.  Felling real lousy from txing and the threat of a manic low from the bi-polar is a dangerous mixture that has a very good possiblity of suicide.  I think the whole txing thing for me would be in a hospital where I could be watched and that is unrealistic.
    Meki, glad to hear your stats, but as I stated twice already and corrected somebody once,      t h e y   a r e   n o t   g o i  n g    t  o    t r e a t.
   thanks to all of you for your concern, especially fretboard,  hope everything goes well for you.
btsmith
There was a person in this forum named DORSEY who was bp and had hepC,  I wouldn't mind discussing somethings with him, if somebody bumps into him.

[Marcia2202]

I'm really sorry to hear that you will not be able to treat. Just a little story... When I got diagnosed a few months ago, I called my stepmother in Paris to tell her about it. She told me that she has had Hep C for years. She is around 70. She has had breast cancer and all kinds of operations. She is NOT going to treat, because she has had enough. She is being monitored at regular intervals and is able to keep it in check.

I think that in your case, you would be able to find an alternative way to strengthen your liver and halt the fibrosis. It is possible. If you are interested in this, there is a good MD in NYC, who practices Integrative Chinese medicine. His name is Dr. Zhang, he is a docter in Traditional Chinese Medicine and also in Western Medicine. He is respected for his work in the US, China and Japan. the website is dr-zhang.com

Wishing you all the best, Marcia

[btsmith]

   Thanks for your concern.  What I am going to do now is find a way to live with this @#&% itching, joint pain, fatique,  and shortness of breath.  Live a more wholesome life.  
    This will be my last post.  Thanks much
   Bye
   btsmith

[meki]

WHAT I SAID:

"""""So no worries about where or how long - only how much damage you have now --- and if you can get rid of it --- or stop your damage from happening. """""

I was trying to say --- because you can't treat does not mean that you cannot STOP your damage or slow it down.

There are several folks here on the boards who have unsuccessfully treated and are using alternative treatments to try and slow the progression of the disease down.

As far as being Bi-Polar and treating... Hmmmm... We've had a LOT of Bi-Polar folks treat.

This requires your doctors to get together and work together - sometimes not something a lot of doctors want to spend time doing.

I'm sorry you're going through what you're going through - It certainly cannot be easy. To see the cure in one hand --- but having something inbetween you and "it".

I think if you found the right doctors - you MIGHT be able to treat if you were monitored closely - and were able to work collectively with those doctors.

YOU ASKED: """""  Has the length that you have had your hepC make it any worse than someone that has had it for ten years or are there too many variables? """"

There are so many variables. I know I didn't have mine in 1993 - diagnosed 2006 Less than 13 years with possible transmission to current.

I was incredibly SICK for the 3-4 years prior to HCV diagnosis. But didn't know I had it...

There are folks who are completely healthy - who have had it for 30-40 years.

So this disease is very individualized.


YOU SAID:
"""" I am a little ticked and only reason I am trying to trace it, for sure, is that maybe the -&*$#@ I got this from could buy back my second mortgage for me.  Too me it is no different than giving somebody aids, if they know they have it.  He teaches school now and has some of the best medical insurance in Oregon.""""

I THINK: I think that you really need to focus on what you have ---- and not how you got it.

I believe I got mine through a shot of Rhogam at a hospital in order to save my child's life.

Would I take away my child's life to feel better now? Certainly NOT!

How you got a disease does not matter - it's what you do with that disease and your body once you know about it.

As far as money goes - there are a lot of programs available for those who have no insurance and are out of work.

You say you are BiPolar... You say that the doctor's will not treat you...


" I think the whole txing thing for me would be in a hospital where I could be watched and that is unrealistic."

Really? And why not? Free food - free living ---- if you're doing it from the State, etc. I know I couldn't afford medical coverage for a whole 48-52 weeks --- and I have good insurance.... BUT most people cannot afford to go that long for medical assistance --- so welfare and Medicare kick in.

I think if you find the RIGHT group of Doctors who are WILLING to work TOGETHER --- you could do it.

AND it really depends on IF you want to do it.

I think being advanced in your knowledge that depression COULD happen... That KNOWING what is going on with your BI-POLAR disease --- that if they WORKED together it could happen.

Check with other doctors... Check with people who WILL work together.

Find one that will.

Or wait until the new shorter TX's come out ---- if your body can.

No matter what tho --- us folks on the board DO care about each person individually.

We may not be YOU --- but we understand what you're going through to some degree.



Much luck to you again and big hugs.

Meki

[btsmith]

  Sorry if offended, but I feel like ****.
   My feelings on this is that I have pretty much wasted a year on this and say I have have four left, that's one.
   If I treat in a hospital, (for from what I understand is 6 mo. to a year as I understand it) thats 2 years.  I can't stay in a hospital for that long I have done that befor for a different problem.
   I'm what I call "mental hospital bi-polar" without going into too much detail.
   I love the imput from all but don't you feel that it is such a personable disease and there are so many varying factors for everybody,  that in the end only the idividual can make the call.  I talk to the doctors and must keep reminding them of prior conversations we have had.
   I can't phsically do alot of these things,  I usally am in bed by 2 p.m.
   Sometimes peopl just get tired of fighting.
  
  

[btsmith]

   I keep getting these after thoughts and hopefully this will be the last after.
   I have been going to the same clinic for 25 years,  I am 90% sure that I have had hep c for 35 years as my GI doc said it was very old and the single obvious exposure.  So in those 25 years at the clinic I have had 25 physicals with 25 blood labs along with probably 100 blood labs to regulate my bipolar medication.  They discovered the hep c 4 yrs ago and a specialist said it was not urgent to treat at that time.
   In 93 I went to the clinic to have myself checked for aids after a fling with a girl who's boyfriend was in a band.  Doesn't HCV show up on an HIV test?
   Bitterness does enter into the total formula.  I'm sorry but it does.
Just something to think about I don't want to think about this, but just get caught up.
   No More
   Thanks

[meki]

No worries --- Bi-Polar or not --- those thoughts are perfectly normal.

I don't know who the heck diagnosed you with Bi-Polar stuff - but you sound pretty darn level headed to me.

I'd be ticked too!

Heck - I was ticked that the doctors tested me and wasted 2 years of my life PLUS --- and all that money looking for a disease that could have been found with a simple blood test.

But - because doctors are human and because I had no known risk factors, it was the last thing they thought of... and it was a PA who thought of it --- after reading my ALT and AST elevated scores for a couple of years --- going back over med records. (It was a slow increase)

Anyhow - all those thoughts you're having are normal.

It's totally up to you what you want to do.

This is a very individual disease - and everything you do will have to be based on how you can mentally and physically take it.

But DO NOT BEAT YOURSELF UP over it --- either way.

Make a decision - research - confirm your decision --- then go forth with it.

Much luck to you - and remember this disease could be progressing your Bi-Polar issues even further along. It might even be part of the reason they are there in the first place.

Let me ask you - without getting too personal --- were you bi-polar PRIOR to your possible transmission of HCV?

Meki

[btsmith]

  Yes I was bipolar befor.  I wasn't diagnosed until about '83 but as far back as I can remember I have always been super artistic, (some say prodigy) and with the depression and wild phases of creativity yes I think forever.  I will say that the more advanced the hep c is getting the more unstable I am getting.  I'll probably increase the lamictal and trileptal on my next psych apt.
   One example of a bi-polar person, Winston Churchill, might explain the disease.  Many great people were bi-polar,  and it would be fine if it weren't for the manic deprerssion side of it

[meki]

I wouldn't mind the Happy UpSwing --- but the Downswing would make me super sad.. I couldn't handle that.

Would be fun to have all that energy - and desire to do everything.

Hmmmm...

Just curious --- are you thin? If so - have you had your thyroid and pituatary gland checked?

My Girlfriend here was diagnosed Bi-Polar, manic depressive - found out her thyroid was whacked out --- took them 5 years plus to discover it --- by accident, no less.

Anyhow - she's fine now -- on synthroid and something else.

But it's just a thought.

Take care.

Meki

[btsmith]

Meki,
   I wrote this over in the bi-polar forum and had some favorable reviews.  
  
" This is how I usually describe being bipolar to people that aren't.
     The brain in a bipolar person is like a nuclear reactor, one thought triggers another thought simiilar to a chain reaction.  If this brain/reactor isn't controled it will have a meltdown.  That is where the medications come in or reactor rods for the power plant.  The more the rods are shoved in, the quieter the reactor becomes which is similar to say lithium, the more you take the more subdued the person will become.  In both instances nothing is done too fast as it takes awhile to see the results.  Once a desired level is obtained they both need to be monitored to keep that level stable as they will try to creep out or completely shut down, both are undesireable results. The power plant is an atomic reaction and the brain is a chemical reaction.
   This maybe an oversimplification but I don't know if  a non bipolar brain can understand a bipolar brain."

Still sound like fun?

btsmith

[meki]

Wow - that's a really cool description.

[btsmith]

  trust me.  you don't want to be bipolar.  Last time I was at my psychs he was telling me how many new patients were coming convinced they were bi-polar.  He spends the whole 40 min. session convincing them otherwise.  We had a good non professional laugh on that one.

[medicmommy]

Just wondering...Have you considered other alternatives, the nonconventional kind, just for a bit of maintenance, and to get some life quality back? I used the Japanese hep C tx, SST (sho-Saiko-To) prior to txing, and it brought my liver enzymes into normal range, I had more energy and generally felt better...My viral load also dropped from 463,000 to 16,000....If for some awful reason I don't SVR, I plan on using it again until a better tx is available...I'm not sure this is the answer for you, but it's cost is about $45-60/ month, and it may help...Good luck...((((((((((((((((((((HUGZ)))))))))))))))))            ~Melinda

[btsmith]

   Yes I went to my primary care physician (PCP) today and he spent alot of time with me talking about how to address my current side affects from HVC, you know the itching, fatique, shortness of breath and joint pain.  This has to be taken care of befor I can do anything more.   He seemed a little puzzled that the GI doc deceided not to tx.
They both work at the same clinic but I have the highest respect for both of them.
    I did call him on why if I have had HVC for 35 years, and I have been going to that clinic for 25 of those years,  then why wasn't HVC picked up in my many labs taken.  I also brought it to his attention that I had myself checked for aids after finding out my sweeties ex was in a rock band.(1993)  I was diagnosed in 2004.  His answer to all of it was that unless you are ordering or specifically looking for the HVC virus that you won't find it.  Anybody?
   My thoughts right now are to get strong, wait till the new year and then maybe start from scratch with a heptologist or hep-whatever their called and see if he or she comes up with the same answer.  But I really gotta lick my wounds for a while.
thanks for the thoughts
btsmith

[btsmith]

hemotologist.  One thing I have noticed is that just when I was starting to make sense of my labs, and asking about them, copies stopped coming to my home.

[Marcia2202]

hepatologist - liver specialist

I just wanted to say that I really wish for your best and that the doctors will be able to find the best way to take care of your medical situation.

Will be thinking of you,  Marcia

[pjhep80]

my one and only i.v. drug use.  I know the date as we were listening to the new "Sticky Fingers" album by the  Rolling Stones.  Is this possible?



let me guess, was the song Sway???

haaaaa not funny i know

i blame my teenage infatuation with keith richards from my hep-c...

LOL

[pjhep80]

and speaking of keith richards....

just read the thread on here from someone who seems to have spontaneously cleared on there own... i have heard that this only happens in the acute phase (1-6 months after infection).... if you do not clear it then, you become chronic and have it for 20+ years like just about everyone here

i read an interview with kr recently wehre he claims to have cleared on his own recently ... which makes no sense if you know anything about him, his heavy IV drug days were in the 1970's after his arrest in '78 he supposed cleaned up, left his long time girlfriend anita because she wasnt ready to stop (who by the way also has hep-c, as does mick jaggers old girlfriend marianne) .... i think mr richards is full of s**t ... haha ... i think maybe he treated and got rid of it but the story that he got rid of it 'just by being keith richards' makes wayyyyyyy better copy...

my question is this, is it possible to spontaneously clear hep-c after 20+ years of infection?

im thinking no....

[btsmith]

  I hope your not asking me as I wouldn't have a clue.  
  Be careful how you talk about my boyhood idol Keith.  When he came out with those manditory anti-drug commercials for the BBC, after getting popped for drugs,  that everyone should say no to drugs,  all my friends said yea we HAVE to say no to drugs, because he took them all.
  I stick by that one time usage though,  but then again that's all it took.

[btsmith]

.....actually it was "dead flowers"....I guess I am lucky it wasn't "brown sugar" huh.....
btsmith

[pjhep80]

at least it wasnt sister morphine

haaa

and one time only  wow... i wish i could say that i was using for 4 years

no worries i still luv keef even if he is telling tales about his hep -  and i might have started becuz of him but ya i quit because he quit also ... i didnt know he did anti-drug commercials, i would luv to see that

...dead flowers is high up on the list of my fav stones songs  ...and i luv them all...

[medicmommy]

You crack me up! LOL  yah. I know the Dr thing...when you start asking questions like you know what's going on, a lot of them shut up and may even look at you a bit weird.  I had so many things going on with my poor body in the past two years, I finally started getting copies of everything to "see for myself" (and to also point out-"What about this abnormal level?"). I stick them in a notebook that I now drag with me from Dr appt to Dr appt...it's comes in handy, and has made me an advocate for myself.
I grew up a bit sheltered listening to my folks old style country music...I recall the first time I REALLY listened to the Rolling Stones (I was in my late teens) I was shocked, awed, and felt just a bit naughty!LOL  -and I really felt I'd missed out on something...Hmmm...Now I'm thinking, maybe only missed out on the music, not the experiences...LOL I hope you have a great day, and feel well...(((((HUGZ))))~Melinda

[122 Tactical Fighter Group]

Dead flowers seems more appropriate..........I have had HCv since 1974 - treated through clinical trial for intrfrn / riba at Mayo Clinic....1-A geno and either 4 or 14 million viral load. SVR since then......at one time I was told they wouldnt give me three days - glad that I dont pay too much attention to them (who are THEY anyway?)  Good luck to everyone on their treatments -

[btsmith]

  Your were supposed to feel shocked, awed a little naughty....that was the whole idea.   The drugs were really bad as alot of my friends are dead or dead from the neck up,  but I would never trade that period of my life for anything.
btsmith

[btsmith]

three days to live?