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life with out treatment

how long can one go wiyh out treat ment and what are the symtoms of last days like.....
what about natural treatment and sucess
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Avatar universal
I won't comment on what it is like to be in the end stages of liver disease - too many folks here can supply first-hand knowledge and there is nothing I can add to that. They will post info for you.

Natural treatment? Almost 100 percent of the "natural" treatments are quak medicine. Some treatments seem to help reduce liver inflammation which is generally held as a good thing. There certainly are no "natural" cures - unless you want to count interferon as natural, which it is, but in unnatural ammounts.

It really is not well understood who will have a quickly progressing disease and who might live to their 8th or 9th decade with this stuff. The point is there are no easy answers or decisions with this disease.

I don't know what you are having to struggle with, but I pray it resolves in positive way. God bless!  -Michael
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Avatar universal
Right now I am dealing with life without treatment because I cannot tolerat the meds.  I don't think of an end and in my humble opinion thinking of an end does not get you through the present.  I am 52, single, I work and enjoy everthing I can.  My 2 children are grown and the 3 of us are best friends.  Work on now.
I agree with Michael, there is no "natural cure".  Stick with nutrition, vit a supps maybe like folic acid and vit C.
Take good care.
Cathie
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Avatar universal
Could you give us a little more information?

Your question is too broad to answer in such a small amount of space.

How long can you live without treatment is a vastly different question than whether a person who can treat, should treat and when. I'm guessing that that is your concern.

Most people die WITH hepatitis C and not OF it. There are factors that determine how well you will live, just as there are factors that determine how long.

I   emphasize lifestyle choices for people with hepatitis C.
A majority of patients, for one reason or another , cannot treat with interferon, do not respond to it, cannot afford it, etc etc. Lifestyle matters and it matters a lot. You cannot rely on interferon alone to improve the health of your liver. This is in addition to the decision to treat with interferon, not a substitute for it.

The lifestyle choices you make can make a huge difference for those who do treat and those who do not. They have the greatest impact on those who are early enough in the disease to make a decision to improve overall health and well-being and who make a commitment to a lifelong strategy to protect their livers and the rest of their bodies. Lifestyle choices impact the success of the treatment for those who treat. No doubt about it. For most people, getting the lifestyle in order prior to treatment and going into a course of  treatament in "good shape" improves the chances of success and  can reduce the discomfort of side effects. It takes work and commitment.

Overweight people have two strikes....one, the treatment is not as likely to be effective, and two, they have a greater chance of having a fatty liver (which can account for fibrosis and liver damage all by itself) losing weight before treatment and increasing fitness improves lung capacity, circulation, mental outlook, and fatigue. It decreases the potential complications insulin resistance that we are now hearing so much about with reference to hepatitis C.

Smokers, likewise have been found to have increased fibrosis of the liver as an independent factor. It also is thought to increase the odds of liver cancer. Add hepatitis C and you cannot tell what is actually causing what. People with hepatitis C, before, during or after treatment are working against themselves if they smoke.

Alcohol use also has been categorically proven to cause liver disease and cirrhosis independently of hepatitis C.

When you connect the dots, there are factors that a person should seriously consider when trying to stop progession. These are three, there are more.

We have a large population of people who have had hepatitis C for many years and did not know to protect the liver and reduce the factors that cause liver disease and damage. In those people, the majority STILL don't die of hepatitis C, although the damage may have progressed beyond what it would have if they had known to take care of themselves. So, is it the lifestyle or the hepatitis C? That is a question that is still open. But, for certain, reducing the risks of lifestyle behaviors that work against healing and health do matter.

So, it depends so much on where you are in your disease. There is no doubt that there are people who have progressed in their liver disease and face transplant and end stage liver disease. But, even these patient can benefit in knowing about the types of research that show benefits in quality of life and the impact decisions in self care can have on the disease.  This is an adjunct to care, not a substitute for it.

You cannot cure hepatitis C with lifestyle choices alone. The open question is : Can you delay liver disease progression, stop progression, or even improve your condition if you become healthier and take care of some basic factors that increase progression and the disease process? Would you have realized progression if you had only the hepatitis C virus and had not been choosing (unknowingly) behaviors that make the disease worse? For those with minimal disease, there is choice. Likewise for the newly infected. For them, there is the firstline option of taking the time to determine (under close medical supervision to monitor for changes) whether that is a good strategy. Interferon therapy has its downsides. You can improve your odds of success through wise choices and good timing. And, for those who cannot treat, life may simply improve your odds of living a long life and dying of something else entirely unrelated.

Since I do not know what you are facing or what has brought the question up for you, all I can really tell you is, that if you do not treat because interferon is not right for you, lifestyle and monitoring become critically important. The same is true for anyone who has treated, whether it was successful, or not.

Preserving the gains made by the treatment is critical to living a healthy life beyond treatment.


I hope this helps,

thanbey
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Avatar universal
There is something called Sho-saiko-to that I going to start taking. (see my post on <A href="http://www.medhelp.org/perl6/hepatitis/messages/C36301-27.html">March 7th</a>.   It does seem like it may be a <B><I>legitimate</b></i> herbal alternative to tx for preventing/reducing fibrosis and preventing liver cancer (but not eliminating the virus).  Of course, more research is needed, but in my opinion it seems to have merit.  Memorial Sloan Kettering is conducting <A href="http://www.mskcc.org/mskcc/html/2270.cfm?peds=no&IRBNO=02-073&team=Hepatitis%20C&TT=">Stage II clinical trials</a> (which Thanbey was kind enough to post).

I asked my GI at the Center for the Study of Hepatitis C about it - he said he never heard of it, but he knew the doctor conducting the study and often referred patients to her; he was going to ask her about it for me.  I am meeting with my GI, who recommended I wait to treat, to discuss Sho-saiko-to as a strategy for preventing fibrosis until better treatments come along.  It can be purchased online and should NOT be taken by anyone currently taking Interferon because the combination is associated with development of interstitial pneumonia.

G
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Avatar universal
I hope you take the time to do a lot of reading and research.  Having Hep C is not in and of itself a death sentence.  You are more likely to die with Hep C than FROM it.  That said, high risk behaviour, especially drinking for those with liver disease will make things worse and quicken the damage.  You'll find many if not most of the people here have decided to avoid alcohol completely and forever, while others who have cleared after treatment will have a rare drink on special occasions.  
Take a deep breath and relax and learn!

Kim
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Avatar universal
Where can you purchase the herbs and where would you get the dosage ? I would love to have more info on this. My husband, is delaying treatment for 6mo/1yr, due to business. He is 1a..Stage 1 mild fib. I saw the study on Thanbey's sight but didnt know you could buy the herbs. Thanks !
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Avatar universal
You can refer to the post on March 7th by TA K for one resource on where to purchase.  You can also go <A href="http://www.4-sho-saiko-to.com/">here</a>.  One of the ligitamate manufacturers is <A href="http://www.honso.com/">Honso</a>.

From what I read so far I would recommend that you make sure your husband has no pulmonary problems and that he is monitored by his doctor when taking due to the low risk of interstitial pneumonia.  Also, be careful with taking licorice products/supplements (which seems to have benefit to people with hep c) while taking sho-saiko-to.  One of the incredients in Sho-saiko-to is licorice, and licorice contains something called glycyrrhizin which can cause problems for people with high blood pressure.

G
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Avatar universal
Misha Cohen and Dr. Robert Gish have written a book on Traditional Chinese Medicine and hepatitis C. It is available at any large bookstore or online.

I hope this helps,

thanbey

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Avatar universal
whoops...sorry...I forgot to mention that the recommended dosage is on the bottle.  I don't remember what it is offhand.

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

G
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Avatar universal
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
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Avatar universal
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
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Avatar universal
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
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Avatar universal
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
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Avatar universal
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.  





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

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