Alternative medicine

[gahli]

I contracted hep c from blood transfusion in 1976 when I had my daughter.  I was not aware until receiving a letter from the red cross. I went at that to my regular Dr who said it was probably a false positive and thought it would be a waste of money and time to run the test. I let it go until 2000 when my fatigue level was so high. We had moved so went to a different doctor.  He confirmed I did have the virus, sent me to a gastroenterologist who found I had the type that is not responsive to standard treatment. He gave me 5 years, seven if I was x-tra good.  I received the a & b vaccine and opted out of the treatment. Started taking Silymarin Milk Thistle and staved it off for many years. Got my self in a very stressful situation and it has been vengeful. All my levels are indicative of cirrhosis. I have put myself on an alternative cocktail of 5cc of monolaurin 3 times a day(has been found to kill the hepc virus), Bio Fibrin 2x a day(helps dissolve those tough cell walls) selenium 400 mg daily(stops virus from reproducing, alpha lipoic acid 600mg daily(helps us get energy from our cells), b complex because the alpha lipoic can deplete vit b and 3,000mg vit c and 2000 mg milk thistle(regenerates liver tissue).  I don't yet know if this will work. Guess I just needed to talk with others in the same boat. I've been on an emotional roller coaster.

[his3707]

have you had a biopsy? are you sure you have cirrhosis?

[orphanedhawk]

When I was diagnosed with cirrhosis, I saw an herbalist. She told me she could help me with my symptoms and side effects of treatment but no herbs, supplements, or other alternative medicine would get rid of my hep C or cirrhosis.

She was right.

Please see an experienced hepatologist ( liver specialist) to help you. You cannot out guess this insidious virus which kills more people in the US than AIDS.

[Dee1956]

I forgot to mention, when I was first diagnosed with Hep C, my blood levels, liver enzymes did not indicate how sick I was.
The doctor told me I had plenty of time to think about what I wanted to do.
Then he did the liver biopsy and told me I had no time to wait.  I had to treat right away.
I just wanted you to know that blood levels do not indication severity of damage.
Like you I tried supplements for 3 months thinking it would help me and had a false sense of security as my liver enzymes fell.  Then I had the liver biopsy and found out I had irreversible damage.  I thank God every day that I found this forum and all of the helpful loving people here who helped save my life
All my best to you.

[Dee1956]

Hello there.  Everyone above has given you excellent advice. Most regular doctors do not know much about the Hep C.  A good Hepatologist could really help you to understand your condition.

I had Hepatitis C for 30 years before discovering I had it.

In 2008 I found out I had Hepatitis C as well as cirrhosis and could not wait for tx.  I was told in 5 to 10 years I would need a transplant.  From what I have read 10K people die every year waiting for a transplant.
I tried the standard of care back then but relapsed after finishing.

I then waited for the new Incivek treatment which was approved in May 2011

I finished treating with Incivek, Peg and Riba a year ago.  I have killed the virus and the chance for it to kill me.  

I am now much improved and am so glad that I treated.  While the tx was not easy, due to the cirrhosis, I made it and am now HCV free and getting better all the time.

There are two new drugs the Incivek that I took and Victrellis.  They are helping people with Geno type 1 by leaps and bounds.

This forum is the best for information, you can click on the seach icon at the top of the this screen and search for anything you can think of or you can post a question.  I received more help and support on this forum than any place else.

There is financial help if you need it from the drug companies.  They helped me with my co-pays.

Good luck to you

[ceanothus]

I'm so sorry that your initial doctor gave you such very bad advice, and that it has progressed to cirrhosis (if it really has). I'm not sure your current doctor is much better than the first one. What is he talking about with your "levels are indicative of cirrhosis"? Have you had a liver biopsy? That is the usual way to determine cirrhosis, although some doctors are starting to use a fibroscan or an MRI elastrography scan. If the doctor is giving you a diagnosis of cirrhosis by looking at things like your liver enzyme levels then he's a lousy doctor. It's also impossible to predict how long anyone will live with cirrhosis. If you treat the virus and eradicate it the odds are very good that your ultimate cause of death will be whatever else catches up with you as you age, but not cirrhosis. The alternative meds you are using may or may not help your liver in coping a little longer with the virus, but they are NOT going to cure you of the virus. Current treatments can cure you. I've had Hep C since 1984, and I've had biopsy-confirmed cirrhosis since 2004. I've treated the virus 3 times over the years. The first two attempts failed because the meds weren't good yet for type 1a (one of the ones that used to be considered not very responsive to treatment). My most recent treatment was with the newer meds, and I am now cured. I had to treat for 48 weeks (everyone with cirrhosis has to treat that long, as the cirrhosis makes it harder to kill off the virus). I treated with interferon and ribavirin the whole 48 weeks, but took a third drug, Incivek (one of the two protease inhibitors available) for the first 12 weeks of treatment. It is a difficult treatment, but far, far easier than dying of liver disease. Now that I'm cured my hepatologist tells me that my odds of liver cancer or end stage liver disease are very much reduced. Please consider finding a really good hepatologist, preferably one who works at a liver transplant center or at least a very large hospital, as these are the doctors with the most experience in treating this virus, and then please consider treating it. You could be cured of the virus completely, rather than just trying to cajole your liver into lasting a tiny bit longer with the alternative medicines. Good luck!

[can-do-man]

As pooh said you really need to see a Hepatologist, a lot has changed in the last few years and success rate has never been higher... One thing is for sure alternative medicines will not stop the progression other wise you would not be cirrhotic now.

I also have cirrhosis, failed treatment back several years, retreated with one of the new PI's and now cured... You really need to take this serious and rid yourself of Hep C, it can be done. Doing nothing things are only going to get worse....... Hang around, ask questions. Many of us here that has cirrhosis and now cured.......... Wishing you the best  

[pooh55811]

Welcome to the forum. I am sorry that your liver fibrosis has progressed to cirrhosis and I am sorry that your doctors did not offer you much in the form of treatment.

Did you ever ask or did your doctor ever tell you which type of Hepatitis you have, your Genotype? This is important because your Genotype determines which treatment regimen you would need to do to clear the virus. All of the Genotypes respond to stand of care treatment. It is just that some respond better than others. There are new drugs available for the most common Genotype, which is Genotype 1. They have been available for 2 years (on the market). These drugs have increased the cure rate up to about 75% depending on various factors. For some the cure rate is even higher.

Your supplements and alternative medicine WILL NOT cure you. Your hepatitis will continue to progress even with the supplements and alternative medicine. They may help you some, but they will not cure the Hepatitis.

The only thing that will cure Hep C is the recommended treatment, which, as stated before, depends on your Genotype.

You now have cirrhosis. However, you can still treat your Hepatitis C and stop the advancement of the liver fibrosis. If you do not get treatment now, your liver will probably eventually decompensate (your liver will fail) and you will develop End Stage Liver Disease. You need to get an appointment ASAP with a Hepatologist at a major university affiliated medical center/liver transplant center. You need an examination and an evaluation by a Hepatologist who is experienced with hepatitis C and who is very knowledgeable about the disease and its treatment.

It is not too late to treat the Hepatitis and get cured. You just need to be under the care of a Hepatologist at a large university affiliated medical center/liver transplant center.

You are about 125 miles from St. Louis. I would recommend that you get your doctor to refer you to a Hepatologist at:

Saint Louis University Hospital
3635 Vista At Grand Blvd
St. Louis, MO 63110
314-577-8000

Or call and make an appointment yourself. (phone number above)

Here is a link to visitor and patient information:

http://www.sluhospital.com/en-us/ourservices/hospitalservices/pages/default.aspx

Financial assistance link:

http://www.sluhospital.com/en-US/ourServices/hospitalServices/Pages/FinancialAssistancePrograms.aspx

Link to the hospital's gastroenterology (including liver disease) program:

http://www.sluhospital.com/en-us/ourservices/medicalservices/pages/gastroenterologyservices.aspx

Please follow up and get appropriate care from a Hepatologist soon. You still have time to treat the Hepatitis and stop the progression.

If you can tell us more about yourself it may help people respond better and more accurately.

Best of luck.