Age of hepitus C

[btsmith]

   My GI doc says my Hepatitus 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