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?

[btsmith]

three days to live?

[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

[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 -

[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

[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...

[btsmith]

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

[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.

[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....

[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

[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

[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.

[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

[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]

  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.

[meki]

Wow - that's a really cool description.

[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]

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]

  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]

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]

   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

[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.
  
  

[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]

   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

[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