Hi guys! I'm a newcomer to this..

Great website I stumbled across, looking for answers to all of my HCV questions.  Looks like there's quite a family of us out there.  1 1/2 months ago I tested positive for HCV... figured I've had it 30+ years, but then someone earlier mentioned that it wasn't around 30 years ago.  When did it actually first raise its ugly little head?  

I've quit drinking (2 months now) and feel way better.  I had started having "atopic dermatitis" many months ago, but that disappeared when I quit the wine.  There are still more tests I have to go through, like a biopsy, I would imagine.  Is that where the Genotype is revealed?  You all have so much knowledge about HCV; I feel like a first grader!  My viral load is 643,000,whatever that means.  Since I quit drinking, my AST and ALT dropped from 95 and 145 (respectively) to 42 and 68, just above normal.  ASP is normal at 5.1.  Bilirubin is normal.

In three days my husband and I are going to a class on HCV that our HMO offers; apparently the MD that puts it on is pretty good and knowledgeable in this field.  I've also been looking into alternatives like TCM (trad.chinese med.)  Anyone out there have any experience with that?

I'm 54, very active, not overwieght and in good overall health, except for the obvious, and a case of diverticulitis, which I haven't a clue as to how I acquired; I avoid processed foods and we grow our own fruits and veggies.  I am now eating WAY less meat than previously (I love beef and pork), and fats are almost non-existant.  And I take milk thistle... and am beginning to really hate supplements!

Any comments?

[desrt]

Hi,

HCV is an RNA virus that's probably been around tens of thousands of years. Up until 15-20 years ago it  was refered to as nonA/nonB hepatitis when people were aware of it at all.
There are many different views about TCM on this board. My feeling is, it may be useful in controlling the side effects of treatment and maybe in helping the body 'co-exist' with the virus prior to treatment - but this is hard to prove since 80% of the people infected do this anyway.

[FlGuy]

Doc will usually order geno-typing the same time they order viral load.  You might check back with the doc. It's a very good thing to learn more before you committ to any options that may be available to you.  Once you have the geno type, viral load, biopsy results, other blood stuff you'll have a good picture of where you are.  Biopsy, although sounding kinda spooky, is not all that bad.  Are you in Maui?  By the way, there are no docs here, just hcv reprobates.

[Alady1620]

I think the virus was around 30 years ago but it didn't have a name.  Does that make sense?

[NYgirl]

30 years ago it was called Non-A, Non-B.  My xhusband had it then. They didn't know anything about it at all back then and had pretty much just recently discovered HIV even.

Good luck to you Mauilady!  I can tell you that this isn't the most fun thing to go through but it IS doable.  I've had some of the worst sides you can get and I opted to extend my treatment from 48 weeks to 72 to improve my chances of it not coming back.  If it was really THAT bad I wouldn't have done that.

Try to remember = the people who have NO sides don't come in and post mostly because it's not on their minds so what you read is those of us who are confused and having problems with treatment.

I've had it about as long as you and never had a clue that I did...I drank and drank and drank and DRANK some more and then when I got my biopsy results I was already at stage 3.  I did it to myself.

If you see a picture of what liver damage looks like...it will help you never to want to drink again let me tell ya. It was really eye opening to me.

Anything that helps encourage us NOT to drink is a good thing because alcohol is really poison to our livers.  It's a GREAT thing you haven't drank in 2 months!

Best of luck!

[headsrtails]

I was on a cuttting edge program but got bumped. The guy heading it here in NYC is Ed. Bini...very much at the forefront of research. He thinks HCV has always been here and not just the 30 years that you mentioned, but with lifestyle changes it has raised its ugly head. He also mentions, and this what i like about his honesty, that it is an unpredictable virus and that the med. communtiy knows very little about it; hence the differential in answers and even the idiocy across the med community tha we, as HCV +ers, have had to deal with (I have read many scary scenarios on this forum with doctors who don't know S*** and will not even admit it, that is how arrogant they are). He personnally told me that he has some patients who are HCV positive, drink like fish, and do not increase VL nor do they progress any stages (they ave taken bx). He also verified the possiblity that some livers actully regenerate and drop down stages after tx!!). I am taking about peope who are chronic and are not only antibody +. he also said that (here's one for Rocker) if you change your life style and your slow in developing stages (I was either infected in '82 or 92', and am stage 1, grade 2) that you should go organic and not eat any junk food, eliminate alcohol, and other toxic additives both legal nd illegal, exercise, drink tons of water and just sit it out, either for new tx, or probably that you'll just die with HCV. I thought about it, but HCV has inserted itself in my lifestyle, e.g, I like having a nice wine with my meals especially, for exemaple in Paris, and I really hate condom use.

[mycoldfeet]

I think they used to call everything from tuberculosis, cancer, and liver disease the consumption if it didn't have a name, At least til the 1900's

[cuteus]

welcome there:  your homework for today and many more days is to read as much as you can, so that you know as much as your dr! maybe more. here are some good sites:
hcvadvocate.org
natap.org
janis7hepc.com
projectsinknowledge.com

you will see arguments for wating to tx the virus and to treat while healthy, and nobody is correct exept you, who will make that decission based on knowledge.
I am now your age, and because of arthritis like symptoms decided to treat three yrs  ago.  I was successful in eliminating hcv, now two yrs in Nov.  HCV and then interferon might have contributed to the arthritis remaining, maybe I waited too long for a dx, no, I tried to get one, the drs did not test until 2003. you are lucky that they test for hcv with more frequency. I waited for over 10 yrs for a dr to have the brains to make the connection.  read about extrahepatic manifestations, hcv is not a liver disease only.  good luck to you

[NYgirl]

Cuteus thank you for the morning laugh.  

I think it should be S.O.P. for all newbies to at least be shown the Janis website and homework for them to read it.  But to see it written out like above just tickeled my funny bone big time for some reason, I don't know WHY but it sure did. :)

[strator]

I've got a comment. You sound like you have a great attitude and are already attacking, by learning, the hcv as something that you are going to find a solution to. Awesome. I didn

[FlGuy]

Don, have you had a pcr since you finished?  It's probably been a couple of months now.

[strator]

No. doc wanted me to do one at 3mos, which is in a couple of weeks. he was funny, after I stopped the meds I asked when I should get a pcr, and he said...'well when do you think you'll be mentally ready for it?' I told him I was a lot better at looking at results objectively. H esaid well 3mos would be idea, see what happens, take a break and we'll see what happens and if it be the case we may wait a while and see what's happening w/ the new meds.

[ladybug52]

Thanks so much for the encouragemant and understanding. I feel so much better admitting that I've had a hard time giving up alcohol completely.It's very confusing to know you have a disease but have no symptoms. Your comments have given me more resolve to respect my liver. I respect you all for having the courage and respect for yourselves to quit drinking and start tx.  I have always felt like an outsider looking in because I have not been as strong as some of the others on this forum. Thanks again for the support.

[ladybug52]

"I've had it about as long as you and never had a clue that I did...I drank and drank and drank and DRANK some more and then when I got my biopsy results I was already at stage 3. I did it to myself."
You are less to blame than those who know they have the disease and opt to drink anyhow. I actually fall into that category and I need encouragement to stop. I know from your previous posts you feel very strongly about this.  I am stage 2 grade 1 and I am waiting to start tx. Most of the time I don't drink, but then I think "Well I've had this disease for over 30 years,  I'm not going to drink after I start tx, What's one beer going to do, etc.  In other words I rationalize. Please don't judge me I know I'm an idiot but tell how you quit.  Thanks

[mauilady]

Wow... unreal!  You guys are great!  It's morning here in the Aloha State; yes, I'm from Maui, Hawaii born and raised.  

When my doc told me I was positive, I wasn't surprised.  I knew that someday my previous devious ways would come back to bite me in the butt.  My reaction was: OK... now what do I do to fix this?  The info all of you are offerring is by far better than what the medical profession has to offer.  Them and their text books; we're just another number to them.  It's a good feeling to have all this support, even though I've never been one to partake in any sort of group thing.  Never too late to start, huh?

I'll be checking out the websites that cuteus recommended, but I don't spend much time at the computer as I'm on dialup (#%!!@#!) and there's too much happening outside.  But the link to the forum is now in a prominent location on my bookmarks bar.

Mahalo (thanks) nui loa (very much) for all the support!

[friole]

mauilady
greeting from the mainland and welcome to the "club."  I would like to add one more site to your homework list.  You have to register here, but it is free.  It is a site that doctors can use to get continuing education credits on hepatitis and this is a slide show presentation on HCV.  I hope it works on dialup (I finally changed).

http://www.clinicaloptions.com/hepatitis/treatment%20updates/hcv%20core%20curriculum.aspx

I had Hep C for 35 years and finally treated in 2005/2006 - finished in August and so far my tests show clear.  I am glad it is a part of my past not present.

ladybug - I too had very little damage considering the amount of time I was infected -- grad 1, stage 1.  At 57 I really was not having any symptoms except maybe excess tiredness.  Some doctors did not recommend treatment but I want to go into old age and retirement (still years away) as healthy as I can.  Don't beat yourself up about drinking when you knew you had C but it may be easier than you think quiting (maybe - depends upon the amounts) and  you may feel worlds better.  Good luck on your journey

[Mister beagle bailey]

Welcome to the forum!  This is a great place to belong and you will find much knowledge here.  When will you start treatment?


Beagle

[mauilady]

I'd like to find a bumper sticker that reads:  I DID IT ALL BY MYSELF!!!  
(meaning... I have no one to blame but me...)
:-)

[NYgirl]

I'd be the last one to judge you for drinking or I'd be the biggest liar on the face of the earth.  God knows I understand how hard it is to quit drinking and drugs.  The psychological part is so much harder than even the physical effects of withdrawl (withdrawal). And then on top there is the "habit" of doing it...certain hours of the day like when you get home from work etc. etc.

Heck some of the summer days this summer I wanted a wine cooler more than anything in the world.  It was only keeping in mind what my liver looks like...and the fact that it could completely negate all of the effects of treatment was I able not too.

Generally when I want to like that I say to myself "well a few more months and you can have one when you're not on treatment"...although I don't plan on it then (unless maybe my liver damage goes miraculously down to zero) it keeps me on course for that day.

Nobody ever said it was easy - just necessary.  I had no idea what I'd done to myself, honestly maybe I had an idea...but I just didnt care...cause like all young people I was gonna liver forever and it couldn't happen to me...and all those things.


Do the best you can...that is all anybody can ever ask you to do you know?

PS I still have the same problem with cigarettes even though I know better, ugh.

[strator]

I also drank after my hep c diagnosis(grade 2, stage 1 to 2). Even after my doc said

[FlGuy]

You're a pramatic guy and I'm sure you'll have a very 'strato-like' perspective when more info comes your way.

I would expect that with the milder weather in your area and the decreasing influence of the meds that you are scampering around attics and crawl spaces like a young and nimble raccoon.  Hope all the Strator men are doing well.

[friole]

You sound like me -- on the outside looking in.  I have been told that many times in my life. Some of us just prefer our solitude, I think.  When I first tested positive for the antibodies in 1993 I quit drinking for a whole year.  I would not have called myself an alcoholic, but enjoyed it none the less.  After that year I lost that resolve -- like you said I was showing no symptoms so assumed I would never have severe damage. The more I learn about hepatitis and the workings of the liver, the more I realize I probably never would have severe damage.  

I stopped drinking margaritas years ago because they started having a different effect and I felt bad in the morning.  Then my indulgence was 2 Coronas (ahh how I miss sitting on the back porch on a hot Texas after work sipping an iced Corona with lime). But more than 2 and I could feel it in the morning, so I had to ask myself the hard question -- was I overtaxing my liver?  Was there a change?  

With a biopsy of grade 1, stage 1, I realized that damage was happening.  The liver was inflamed and the scarring was starting

[friole]

You sound like me -- on the outside looking in.  I have been told that many times in my life. Some of us just prefer our solitude, I think.  When I first tested positive for the antibodies in 1993 I quit drinking for a whole year.  I would not have called myself an alcoholic, but enjoyed it none the less.  After that year I lost that resolve -- like you said I was showing no symptoms so assumed I would never have severe damage. The more I learn about hepatitis and the workings of the liver, the more I realize I probably never would have severe damage but that does not mean quality of life would not be altered.  

I stopped drinking margaritas years ago because they started having a different effect and I felt bad in the morning.  Then my indulgence was 2 Coronas (ahh how I miss sitting on the back porch on a hot Texas after work sipping an iced Corona with lime). But more than 2 and I could feel it in the morning, so I had to ask myself the hard question -- was I overtaxing my liver?  Was there a change?  

With a biopsy of grade 1, stage 1, I realized that damage was there, altho light.  The liver was inflamed and the scarring was starting.  And (after re reading your post) no the genotype is a separate test not done thru the biopsy.  After you have had your biopsy, post the results and we can talk about it.
frijole

[ladybug52]

Sorry to respond so late, I just now read your post. I'm in Texas too and I know what you mean about the ice cold Corona's with lime sitting on the porch!  I am a stage 1 Grade 2 per my bx in Aug. You made a good point about less tolerance.  I can have 2 glasses of wine and feel hungover.  I just didn't make the correlation. I would think "Well I'm not an alcoholic because my tolerance hasn't improved." I should have seen the warning signs that my body was giving me. I come from a family of heavy drinkers/alcoholics that treat me as if I'm a tee-totaler since I don't keep up with their style of drinking.  It's easy to judge my drinking by their standards as harmless, but they don't have this disease.  Thanks for the encouragement.
I have tried to stay anonymous in this forum, I knew you were from Texas but never revealed I am here too.  I am close to the Ft. Worth area, aren't you somewhere SW of here?  You don't have to be specific if you don't want to.

[mauilady]

Interesting to read your comments on drinking; they sure hit home with me.  I've got alcoholic genes in my family (maternal side only); my husband has them in his, both sides.  He still drinks, and I think he feels he's lost a drinking partner.  I think I'm an alcoholic, have thought that for years now; being an alcoholic doesn't necessarily have to mean that you drink a quart of hard liquor a day (that's what my husband thinks constitutes an alcoholic... so therefore, in his eyes, there's nothing wrong with me.  Right!)  

Oh, it would be so nice, after a day of toiling in the yard, to sit on the porch and have an icy Sierra Pale Ale; instead, I'll have an icy Perrier... and then another.  Some wine around the dinner hour would also taste fine; instead, I'll have a cup of coffee... and another Perrier!  But, I sure do love the fact that my head is clear, and I'm not totally inebriated before I get the food on the table!  I had almost forgotten what that was like.  And now, it's 8:40 PM, and my brain and body both are still functioning!  I can do this!  And not being hungover... priceless!

Tomorrow we go to the HCV class, so I'll be finding out more on where I stand.  Will keep you posted.  Thanks for giving me some questions to ask the doc.