life with out treatment

[McBeth]

how long can one go wiyh out treat ment and what are the symtoms of last days like.....
what about natural treatment and sucess

[Tallblonde]

G---

I couldn't have said it any better myself.  That is EXACTLY how I feel and it is EXACTLY my rationale for taking a "watchful waiting" approach.  Thank God you and I have that luxury.  I'm sure we'd both be signing up for the current combo treatment tomorrow if our livers were in bad shape or if we were experiencing symptoms that were intolerable.  

But that's not the case with us and it seems more risky than reasonable to treat now.  I asked both my GI's for their prediction (based on their experiences with hundreds of patients) on how much more damage my liver will show on the next biopsy three years from now.  Both said they doubted it would be much different than it currently is.  They both also agreed that I would not be significantly increasing my odds for treatment success by starting now, versus waiting three more years.

The decision to wait is almost a no-brainer.  Almost.

Susan

[honey1616]

Wow..Stage 1 is very good and sounds like you are really keeping on top of information for your husband! He is very fortunate that you love him so much! Then I read that you don't have money for the treatment...And I guess I never think about tons of people that don't have the insurance to pay for this and how on earth could anyone pay for this out of pocket???  It would definitely put you under. I know there is a lot of people doing trials etc for free and someone had just posted where they signed up some where for treatment and doesn't cost them a thing. However...I'm back to the stage 1 also and you have plenty of time to research and get all your ducks in a row. I wish you both the best.

[GwithHepC]

With all do respect, we fence sitters are not sitting on our buns and just waiting.  We are making very well thought out decisions about how we want to deal with a disease whose damage is often times measured in decades.  It seems to me a wise choice to take a very conservative approach towards a treatment that can cause problems potentially worse than the disease it is trying to cure - a disease, mind you, that almost everyone agrees progresses slowly.  Given the slow moving nature of this disease, and yes there are exceptions, and the tremendous amount of research on more effective cures, it is, in my opinion, very reasonable to choose a strategy whereby you help to slow, or even stop, the progression of scarring while you wait for less toxic treatments.   I have no problems with the term "alternative treatment," for it is just that - an alternative treatment, not an alternative "cure."  

I have no intentions of letting this disease get the better of me.  For me, treating this disease and suffering the side effects of the current tx for one - two years for a 30 to, AT BEST, 50 percent chance of getting rid of it is just not worth it.  This disease is simply not that immediate of a threat to want to kill it at the expense of my thyroid, my joints, my state of mind, my quality of life, my eyes, my skin, my hair, and the list goes on.  Not for the <I>SMALL</i> chance it has of progressing before newer treatments come out.  Not when there is strong evidence it can be held in check until better treatments come out.

Those of us who see many more cons than pros to treating given our current status are not fools and value our lives just as much as those who choose to treat.

And now, I am going to get off my ass and get on my NordicTrak - something I intend to be able to do for very many years to come.

G  



"Declare the past, diagnose the present, foretell the future; practice these acts. As to diseases, make a habit of two things

[BD146]

Thank you for your words of determination, encouragement, and hope.    I am also type 1b and also a non-responder.

But I am also determined.

Continued excellent health to you and your family.

EDGAR

P.S. The most exciting and memorable moment for me 6 months ago at my daughters wedding was walking her up the aisle.  And then of course the father,daughter dance.

[Tosser]

I'd like to add one more comment here about taking care of your liver and postponing treatment. I too am a survivor and whole hartedly agree with Indiana, MichaelT and Cuteus. I saw several liver specialists and did lots of research that led me to believe I could quit drinking and start the Milk Thistle along with high doses of Vitamin E and C, reduce my carb. intake, cut out all red meats, exercise, drink lots of water, get hours of extra rest each day and cut back to 16 hours of work each week, and give my liver and it's own defense mechanism a fighting chance to kill the virus itself. Well I did all of that for a little over a year and my viral load went from 7,000/ml to a whopping 3,500,000/ml and could feel myself getting more ill as time went along. I was pretty sick by the time I finally started Pegasys which made the tx hard to tollerate, but all through it I wished I hadn't put it off. Don't wait too long!

I think someone here posted some links to apply for financial assistance for treatment some time back. I think that would be worth looking into. I'll search around to see what I can find and post it back here. In the mean time, maybe someone else here will post that information.
Best of luck to you! ...stay in touch with us.

Tosser
PS. ChevyGal...I'm with you to the end of your tx and beyond, and as for me at 11 weeks post tx... life is WONDERFUL and I am feelin' GOOOOOOOOOD !!!

[berlynn]

Joni, You are one strong Lady! I can't believe everything that you have been through. Makes my stuff seem insignificant. I am glad I woke up at 2am...hahahaha and decided to check in....Your story and those of others are the encouragement I really need right now. Thank you for sharing, kim

[hepcbilly]

Hey you have been great for my family. I just wanted to say we dont believe "alternative" is the answer. We as I stated want to explore "keeping his liver in good condition" while postponing treatment. We really need some time to be able to afford the time to do treatment.We arent sitting on the fence, we know Tx is the only way to kill the virus. We also know if we do treatment now we will go bankrupt. Since billy is at stage 1 and the guy upstairs is looking down on us{as this truley is a miracle"}. What can we do to keep the liver in great shape, while we insure our finances for treatment.If we had no time , we would have to sell out and go for it. This would be even more stressful. We have a little play, so why not get the old liver in shape, get our finances in order and then go for it! This is only our way of thinking. I think it's reasonable, we arent thinking ok lets wait for something better or put of the inevitable, we are well aware of the inevitable. We dont want to wait until stage 4 or being alot older.But today we are stage 1 , we need more money to afford this treatment, and "the guy upstairs" affords us this time.

Mrs Billy

[Indiana]

Note the "odds" in my post. Sure ...this tx does not work for everyone. But it's still a WHOLE lot better than sittin on one's buns and doing nothing about it...or tryin to fool yourself with these "alternative" things. My post was primarily directed at the fence sitters.
I sure hope this new round of tx works for you. You are a real dedicated individual for doing this again. So this isn't the new Peg/ Gamma stuff I have seen in the trials? Are you adding this to some regular Peg/ Interferon and Riba or taking it straight mono tx?  How long is your time frame this time?
I wish you well.............

[Nann]

I had a great attitude, was entirely compliant with the dosing and injecting for two years and still did not achieve SVR.  It is not really an issue of getting up off your A$$.  As you know it is all so individual. I hit a wall this week when the large styrofoam box full of gamma interferon arrived and I knew I was in for 4 shots a week for a long time.   But I never did expect it to be even slightly easy. I am glad I am giving treatment a chance to work.

[GwithHepC]

Hi:

Are you referring to the first link or the second?  The reason I ask is the first link is to a site that sells Sho-saiko-to in addition to Maximum Milk Thistle and some other products, so I would keep that in mind when reading the advice on that site.  (Not to say you shouldn't take Milk Thistle, just keep in mind the source when reading the information.)

G

[thanbey]

Without money or insurnce, who paid the doctor, the lab and the prescriptions for any of the sides?

Thoe blood enhacers, anti-d's and so forth are not free.

Were in a trial that provided for these costs and, if not, how did you you pay for the rest of the costs.

I ask because I get asked all the time and I know of no financial assistance programs unless you are co-infected with HIV.

thanks,

thanbey

[cuteus]

The general medical community and most publications ,it seems,  state that most  people with hep c , will not  die from the infection itself.  

The infection stimulate your system , and in many cases this stimulation goes on for 20+ years.  What damage does  this influx of  natural interferons and the release of  other substances by our immune system cause in our organs and tissues during such an extended period of time? Nobody really knows.
  How long we have to live without TX, no one can really predict with certainty.    Tx can damage our system just as our own immunologic response can.  Look at people with allergies.  It is not the pollen, but their body reactions that sicken them.
It reminds me of someone that had liposuction, developed complications a week later, and did not have a good outcome.  Her demise was probably not listed as the result of the procedure since it did not happened shortly after it. And the teenage suicide rate, it is believed that many "accidents" might not be.  But they have to choose ONE statistic .

How can anyone tell if the disorder that killed a hep c sufferrer was not aggravated  or induced by the chronic infection?  The person would not be listed as a liver failure case, but does that really mean hep c didn't influence it?   Statistics are a very interesting thing.  
The choice to tx or not remains with the person after thoroughly informing her/himself and asking tons of questions.
Good luck to you

[new-sojourn]

I didn't take any other meds except otc's, herbs, supplements-and I bought just about everything from costco-so I wasn't takin' anything not widely available.

I did not bx, sona's, endoscopes.  I had a total of 6 visits to a doc in the 'big city' @ around $600 a pop.  I cl'ed in 18 days and my blood values were in the low-normal to normal range.  So, over a yr I spent around $4000.  Friends and family aren't gonna leave me homeless, dying on the street.

My liver failed 9-12-01.  Between then and May 2002, I changed my lifestyle so drastically that I was in good shape going in to tx, during tx and post tx.  Cuttin' out the bad and puttin' in the good about equaled out monetarily speaking.

Sleepliness, depression, nausa?  Smoke a joint, take a walk, say a prayer and 'cowboy up' and do it.  Of course, it was do or die for me.

[MichaelT]

I promised to post any pro-herbal info with any legitimacy. Sho-saiko-to was the only one I've posted here (I think). It does seem to reduce liver inflammation, I sincerely hope it proves to do much more. Thanks for bringing this one up.  -Michael

[GwithHepC]

No problem.  I too hope it proves to do much more.  

G

[susan400]

I saw a program on TLC on Mon. night and the whole show was on liver transplants.  Very interesting show.  The first lady on there, unfortunately did not make it.  They got back with her liver and because she'd started having respiratory complications, they were unable to do the transplant.   Then, there was another guy who wasn't sick enough to be high up on the list (when he checked in), but during the course of the show, he got extremely ill, at death's door with bleeding from his skin.  Fortunately, he got his liver and did great afterwards.  Then, there were 2 brothers on there and one was giving the other a living donor transplant.    Anyhow, it was a very interesting program.  Susan

[Tallblonde]

Hi Ladies,

Do you have any opinions to share regarding taking Sho-saiko-to  and Milk Thistle at the same time?  Do they do the same thing, or do they offer different benefits?  I'm still trying to piece together the ideal "regimen" of vitamins/supplements and the correct dosages.  Any thoughts would be appreciated.

G -- I spoke to the folks running the clinical trial. It's a little pricey for me, too.  They said that I would have to spend about $7,000 out-of-pocket!  I think I'll pass on that one.
  

Susan

[hepcbilly]

Hey Tallblonde  I just looked at the website and it does say to take milk thistle with it. We too are trying to find the right balance with herbs until my husband is ready to treat. Check out the links GwithHepC posted. Keep me posted on what ya find out.

Mrs Billy

[GwithHepC]

Wow...that is a shame.  I assume the reason is because funding for research into herbal alternatives is probably extremely low.  I guess Memorial Sloan-Kettering is not in your network for your insurance.  When I called they said they take Blue Cross/Blue Shield.  FYI for anyone thinking of the clinical trial - the medication is free, but your insurance must cover the doctors visits and lab work.  I am going to work with my GI and PCP while taking.  I think $150 for 3-months (purchased online) is reasonable and worth a shot.

I have no idea about the Milk Thistle.  I remember Galen posting threads that Milk Thistle may increase the level's of medication in one's blood stream, and that this can be potentially dangerous on tx (at least for treatment for HIV, and possibly tx for hep c also), but I don't know how this may apply to Sho-saiko-to. It is worth keeping in mind though.

G

[thanbey]

I have no opinion of milk thistle or Sho-saiko-to. Dr. Seef at he NIH has spoken of this for a number of years and he has published a paper on alternative and complimentary medicine and hepatitis C (he is also a patient).I have a hard copy but haven't found an online copy yet.

My understanding is that, while milk thistle has not shown any clearcut benefit, it has not shown any  harmful properties, either. At least, this is how I understand what Dr. Seef has said when I have heard him speak.

Smoking  anything is a bad idea for someone with liver disease.

I have no earthly idea about the Sho-saiko-to at all and will look to the results of this trial to learn about it.  

[hepcbilly]

I read all the information on the site gwithhepc posted the links too. That company DOES say use milkthistle.

[MichaelT]

Hepatitis Weekly, Jan 13, 2003 p8

    Sho-saiko-to extract reduces hepatic inflammation, fibrosis in nonsevere cases.

Full Text: COPYRIGHT 2003 NewsRX

2003 JAN 13 - (NewsRx.com & NewsRx.net) -- Sho-saiko-to extract, a Chinese herbal medicine commonly used for treatment of chronic hepatitis in Japan, effectively reduces liver inflammation and fibrosis up to a point. It does not benefit severe cases, pharmacologists report.

M. Kusunose and colleagues induced various stages of liver injury in model rats and administered Sho-saiko-to extract to try to determine the conditions under which Sho-saiko-to extract improves hepatic inflammation and fibrosis.

"The liver injury model rats were produced by administration of various doses of dimethylnitrosamine (DMN) and Sho-saiko-to extract was administered to these rats. Then the liver inflammation and fibrosis-improving effects of Sho-saiko-to extract were evaluated according to L-asparate aminotransferase (AST), L-alanine aminotransferase (ALT), liver retinoid levels, levels of hydroxyproline, transforming growth factor-beta (TGF-beta), and the liver fibrosis area. These indicators depended on the total doses of DMN," the researchers said.

They reported that "[t]he ability of Sho-saiko-to extract to improve liver inflammation and fibrosis was limited to the following levels of the respective parameters: AST levels (234-264 U/l), ALT levels (208-232 U/l), TGF-beta levels (1102-1265 pg/g liver tissue), hydroxyproline levels (633-719 nmol/g liver tissue), and liver fibrosis area (9.7-10.6 times for normal rat)."

Kusunose and colleagues wrote that their "findings suggested that Sho-saiko-to extract is effective in the treatment of liver inflammation and fibrosis up to a certain degree of severity, but it produces no improvement in more severe cases."

Kusunose and coauthors published their study in the Biological & Pharmaceutical Bulletin (Effect of Sho-saiko-to extract on hepatic inflammation and fibrosis in dimethylnitrosamine induced liver injury rats. Biol Pharm Bull, 2002;25(11):1417-1421).

The contact person for this report is M. Kusunose, Kochi Medical School Hospital, Department Pharmacy, Nanko Ku, Oko Cho, Kochi 7838505, Japan.

To subscribe to the journal Biological & Pharmaceutical Bulletin, contact the publisher: Pharmaceutical Society Japan, 2-12-15-201 Shibuya, Shibuya-Ku, Tokyo, 150, Japan.

The information in this article comes under the major subject areas of Complementary and Alternative Medicine, Gastroenterology, Hepatology, Chinese Herbal Medicine.

This article was prepared by Hepatitis Weekly editors from staff and other reports.

    Article A96286017

[new-sojourn]

I treated for 24 wks and cleared and remain clear.  I had no money or insurance and got my meds from Schering free of cost.  I didn't want to know what dying a slow death of self poisoning-which is what it is-the liver fails to clean the toxins from the blood and so a person slowly poison's himself w/his own body's toxins.(sub her for him, if you're feeling picky)

My liver now functions in a limited capacity so I strickly regulate the amts of toxins I put in my body.  That's why I always say to choose your poisons wisely!  And negative emotions are the most corrosive of all. And a joint never hurts.

I favor 'natural' and nutrional and herbal and other supplements to handle and sx's that did and do occur.  I'm pro tx to kill the virus and tend to shy away from Rx's for sx's and symptoms.

B/ it ain't easy!  My biggest ***** right now are trans-fats and modifies corn syrup in our food.  So, I now prepare almost all my food where ever I am in the world.

And I love no drinking or doing 'class A's'.

So life can be as good as you want to make it.

[Tosser]

Hi All !

There's not a thing I can add to this thread to help more than you all already have. It's a wonderful discussion but I'm certainly not qualified to comment.

I'm a little out of place here anyway because I feel like I barely qualified to be included as a Hep-C patient anyway having been a genotype 3a and only sentenced to 6 months of tx, but I just had to say a little about how well you are all getting along today. I'm so very glad to see this. It's almost like old times again...you know...like when everybody was just here to try to help each other, and maybe even have a little good clean fun doing it. :) Thanks to all here who have given so much!

Tosser  ;o)

11 weeks post Pegasys/Copegus...still SVR !!!