Why is everyone so worried ?

[nobear]

I am in my 39th. year of having HCV genotype 1A the most deadliest of all the 22 known genotypes of the Hep. C Virus. I read some and most of the questions concerning the virus and the medication taken for it. I have only had a liver biopsy done to test for the genotype. In the 39 years I have taken no medication for HCV it has been all natural foods and most important certain natural liquids. I only have blood work done evey 2 years to check liver functions and an ultra sound every 3 years to check for scaring. So my question is since I have survived this long without medication and knowing exactly what foods and liquids to have and not to have, Why? have you people not tried the natural way to live with and treat the HEP. C VIRUS. There are a few ways to make the liver happy and work better naturally and a few ways to clean the blood naturally and flush your system out. Why have you not tired them or do you not know them?

[susan400]

It is all just hit and miss... you could be a total junk food junky and live with this for 50 yrs., or you could be a health freak and be stage 4 cirrhosis in 10 yrs, you know?  Sometimes, I feel self pity like, "why have I not been able to clear when so many others have cleared?" And other times I'll like say to myself, 'cut that out, you are doing great and it's not so bad...', it all depends on my mood and it flip flops back and forth from one day to the next.  At times, it feels like I can't really tell someone, 'oh, definitely do treatment because it will cure you'..., since that has not been what has been my experience.  But, on the other hand, I've had a lot of friends for whom have been cured with treatment.  So, in a nutshell, I think I should just shut-up because nothing I say is really all that helpful..., in fact, it's probably rather confusing.  Susan400

[Marcia2202]

Ignorance and denial are especially dangerous when on has this disease ...

Educate yourself and see a competent hepatologist!

We are not trying to put you down, but trying to open your eyes and help you

[GSDgirl]

nobear has left the building

[capealava]

You are extremely lucky. I went 36 years using natural products. herbs, ect. I am sure they helped hinder the HCV effects. However within just one year I started to feel badly. I knew at that point my luck ran out. I am on Injection 18 virus undetected. 6 more to go. I would not bet on anything concerning this disease. Keep up the tests and take care.

[22hamilton]

Yes wll put, nobody should be dismissive of this disease. My history showed no damage for decades, then over 10yrs became cirrhotic-it lay dormant then snowballed !

[IMstacie]

oh yes, your last comment hit the nail on the head.  I will never forget the people I saw die from liver disease.  

[copyman]

Why is everyone so worried ?

My answer to that is if you ever saw anyone die from liver disease you would understand why some would be worried. It is perhaps one of the most horrible ways to die.

If you are doing good on supplements and/or diet good for you. Keep doing what you are doing.

But I have to say you are very foolish to rely on blood work every 2 years and ultrasound every 3 years to track this disease. I personally would see a hepatologist and have blood work every 6 months, ultrasounds at least yearly and biopsies every 3-5 years.

HCV is a very sneaky disease and has a strange way of sneaking up on you and biting you in the butt.

[adamben101]

It's evident that Nobear is ill-informed on some aspects of the disease, as shown above.  I have no doubt that some people DO actually cure Hep C through natural alternatives, but these people are a minute percentage of those infected.  The facts remain that on average, people chronically infected with Hep C have NO better chance of clearing than going on standard treatment (SOC, PI's, etc.), not alternative medicines.

[orphanedhawk]

Everyone is worried because we live in a society that encourages fear.

Supposedly 20% of those with HCV will develop cirrhosis. 20 % can live with it and never have any liver problems.
Its not about eating well, though that can't hurt.
The research says drinking at least 3 cups of coffee and eating chocolate can help protect your liver. Alcohol isvery damaging.

You are lucky to be healthy and not have liver damage from hcv. Its not about what you eat. I wish it were that simple.
I ate well (organic, home grown etc) exercised and was floored when I learned I had HCV and decompensated cirrhosis. Probably because I was otherwise healthy, I survived a liver transplant and am now doing well.

Good luck to you and welcome to the forum.

[eureka254]

"I have just overcome Stage 4 Liver Cancer that took 2 years on chemo..."

That is quite phenomenal, my sincerest congratulations.
I would very much like to know what chemo you treated with, and exactly what you mean by "overcome"... is the hepatoma completely gone? Any details you could provide about your treatment would be much appreciated, as my husband has Stage 2 Liver Cancer.  Thank you. ~eureka

[tashka]

It is great that you seem to be one of those in whom this disease doesn't progress. But you should remember that hepatitis C is VERY unpredictable, the course of the disease can change at any time, and it happens very rapidly. That is why most people with this disease worry about what is going to happen. There is a reason why hepatitis C is called a silent killer. You feel great and wonderful, nothing bothers you for decades, and then it suddenly gets worse and kills you.

You have to remember that no matter what you do, you have virus in your blood and liver, which means you are seriously ill. Doing blood work once in 2 years is not wise at all. You have to be under close supervision of a doctor and to have frequent blood tests at least. I am not trying to convince you to treat today, but you need to monitor your condition at regular intervals.

I know that you said good buy, but really hope that you read this. People here speak from their personal experience. And if you want everyone to listen to what you have to say, shouldn't you also listen to others' opinions, even if they differ from yours?

[phonefixer]

You could not be more right. Alternative methods should be left up to each personal wishes alone. I have had Hep-C 1a for the past 42 years and have tried three treatments and all failed. All three was a living hell, but a chance to clear the Hep-C , it would be worth it. Clean living is on what you eat, drink and do, is a factor in living a full life with Hep-C. I have just overcome stage 4 Liver Cancer that took 2 years on chemo. Now that the Cancer is gone they checked the viral load. Back in 2001 while on interfron treatment it was at 4 millon, today its at 740,000. Alternative methods  along with the correct meds is a plus in fighting the Hep-C virus.

[spectda]

I thought you were being considerate and respectful of all choices, a good thing.
- Dave

[Anne1717]

Omgosh Dave -    I in no way was implying to rely on alternative methods or even use them.  I felt I was saying just the opposite and defending those who treat since the original poster seemed to be critical of treaters.  So I am sorry of what I said was unclear

[djbn13]

I think most people on this board have treated, are treating or are waiting for the new meds next year so their views are gonna lean in that direction.

I agree with Anne1717 that treating or not is a personal choice and if you decide not to then no one should judge you..  I have had this for maybe 41 years and don't have any symptoms but I do have liver damage as I think most people with hepc does.  I do have lung issues and as much as I want to get rid of the hepc I want to breathe more. The longer I have to wait for the new meds the more I lean towards what you are doing instead.  

Keep in touch good luck and let me know how you are doing.  

Donna

[spectda]

"But I also know how unwise and unfair it is to judge others treatment choices.
It is a big deal.. It is scary. And how to treat is a very personal decision."

I don't think anyone said that using alternatives was a poor choice, only that using them instead of the scientifically proven methods of eradicating hcv can lead a person to liver failure and death. I believe that there are alternative treatments that can possibly slow down the damage a bit. I have never seen a study or any evidence that there is an alternative that eradicates hcv,

People have the right to treat in whatever way they want, they even have the right to no treat and die of liver disease if that is their choice. The danger is when other people on a forum like this who are desperate believe that they will be cured by something that has no chance of curing them.
- Dave

[spectda]

Traditionally people see a hepatologist for hepatitis c, not a pharmacologist. I hope that you continue to be healthy and that you have not forgone the traditional methods of diagnosis and treatment without trying them as well as continuing whatever alternatives you believe in. I hope your liver is in as good shape as you feel since you didn't mention what the results of your biopsy were and you have not mentioned if you have even tried the current medications.

I wish you the best and a long life,
- Dave

[GSDgirl]

how much will it cost me to get all the details of your protocol?

[GSDgirl]

are you a doctor?

[Anne1717]

I am a very healthy lady recently diagnosed with acute hep c most likely infected via the medical profession.  My life style has always been health and the presumption that a healthy lifestyle alone will alone protect you from getting or treating HCV is false.   I empathize with the people in this forum who have been very sick with this nasty virus regardless of how it was transmitted.
Particularly striking to me was the nice lady who perhaps got HCV from a blood transfusion when she was two days old and years later finds out her body has been unknowingly compromised all along.
I know how lucky I am to have caught it so early and have a real chance of spontaneously clearing.
But I also know how unwise and unfair it is to judge others treatment choices.
It is a big deal.. It is scary. And how to treat is a very personal decision.

[nobear]

no i am not selling anything everything i know and learned came from a friend of the family who is probably the top pharmacologist in Canada that works out of women's college on university ave. in toronto ontario canada a Dr. Sellers. so with that note i will say goodbye since everyone has their own opinion on how to survive and actually all the knowledge going back and forth with suggestios and stuff seems to be doing more harm than goood to people because everyone has their own way to survive and they think that their way is best i talk again when i hit 45 years many thanks guys and God bless.

[portann]

Hi Nobear,

It's great that you're one of those who have had the virus for a long time and assume you have no damage. I was also in that situation but treated successfully with interferon and ribavirin.

As you can see, there are lots of responses to some of your misconceptions, so let me say respectfully - you have not taken time to learn the fundamentals of this disease and I think you should, for your own sake, as well as for others.

On minor notes (and to repeat what others have said):

1) viral genotyping is not done via biopsy but by blood test  

2) use of ultrasound is not reliable to measure liver damage in most stages of the disease

3) although there are several genotypes, there are not 22 but rather 6 main ones and possibly as many as 11.

On a major note, try reading this for starters:

The natural course of chronic hepatitis C varies considerably from one person to another. Although almost all people infected with HCV have evidence of inflammation on liver biopsy, the rate of progression of liver scarring (fibrosis) shows significant variability among individuals. Accurate estimates of the risk over time are difficult to establish because of the limited time that tests for this virus have been available.

Recent data suggest that among untreated patients, roughly one-third progress to liver cirrhosis in less than 20 years. Another third progress to cirrhosis within 30 years. The remainder of patients appear to progress so slowly that they are unlikely to develop cirrhosis within their lifetimes. In contrast the NIH consensus guidelines state that the risk of progression to cirrhosis over a 20-year period is 3-20 percent.[8]

Factors that have been reported to influence the rate of HCV disease progression include age (increasing age associated with more rapid progression), gender (males have more rapid disease progression than females), alcohol consumption (associated with an increased rate of disease progression), HIV coinfection (associated with a markedly increased rate of disease progression), and fatty liver (the presence of fat in liver cells has been associated with an increased rate of disease progression).

http://en.wikipedia.org/wiki/Hepatitis_C

So as you can see, a significant number of people live with the disease and die from other causes.

Living healthy is always a plus but I didn't live especially 'healthy' for many of the over forty years that I had HCV. And my biopsy showed almost no liver damage like yours.

(I never enjoyed alcohol, so rarely drank.  That was only because I didn't like it, though.  That may partially explain why I went nowhere with my disease after so long but not entirely.)  

For sure I never  did stuff like "clean the blood naturally and flush your system out", like you propose. Why some people progress little is not through "flushing systems", in my opinion.

One last thing to ponder.....our former medical expert, Dr. Douglas Dieterich, put out a video (someone may provide the link) that says there is a spike after the age of sixty (or sixty-five?) that suggests things can spiral downwards quickly after a certain chronological age. May I ask how old you are and what makes you think that you will not be one who spirals quickly downwards after decades of living with the disease so well? That was my dilemma, so I decided to treat.


As to your last comment, most people are not affected by CYP2D6 (and I'm not familiar with it, anyway):

"prevalence of CYP2D6 poor metabolizers is approximately 6–10% in white populations, but is lower in most other ethnic groups such as Asians (2%)[4]. In blacks, the frequency of poor metabolizers is greater than for whites[5]. The occurrence of CYP2D6 ultrarapid metabolisers appears to be greater among Middle Eastern and North African populations[6]."

http://en.wikipedia.org/wiki/CYP2D6

[pennylanem]

I'm 35 and have had it since birth. I had no damage at all for 25 years and in the last 10 I've gone from a barely 1 to a 3. This is a strange disease. You cannot predict how it's going to treat you.
I've run half marathons, eat vegetarian have not had a drink in 10 years, take milk thistle and drink dandelion tea. I even tried Lloyd Wright's program for a few months and it infact my liver got worse with it. Enzymes were in the 500s at one point...All my lifestyle changes hasn't helped my progression any has it? To think that my progression is becase  I haven't seeked alternative methods or I don't take a healthy lifestyle seriously is a gross generalization on your part don't you think? BTW I have had CT scans and ultrasounds and I had no idea I had gone to a 3. I think they can only check for masses and bile duct flows.It doesn't really tell yo about fibrosis...

[spectda]

I don't mean to sound negative or unwelcoming, but you sound like you are promoting or selling something. Many people come on this forum and prey on people who are desperate. They often start with what they think is a subtle way of introducing themselves, but is very transparent. Do you have something you would like us to try?

There are many good supplements out there and personally I believe in taking the right ones as well as having a liver healthy diet and lifestyle. What I would hate to see is people that are getting sick taking supplements instead of getting treatment that may eradicate there disease.

Have you had a liver biopsy or not? If you have what is your stage and grade of disease. You said the medications don't work for you, does that mean that you have tried interferon and ribavirin and that didn't work for you? How did you determine that the current drugs don't work for you.
- Dave