Antioxidants, blood analyses, and fibrosis update

[mike716]

Hello medhelpers, fellow sufferers of hep C, forum lurkers, people who got here by a wrong mouse click, and all victims of the medical profession. Greetings from Buenos Aires!

It's been quite a while since I posted [not long enough for some, I'm sure], but I have an update that may be of interest, which I propose to share with those who want it, in my inimitable if much-maligned style. And for those who don't want it, I say phooey.

Before I get into it, though, I just want to say a special Hi! to my friends trish, aheart, nygirl, james, bali, susi, figuy, hector, willing, mary, gsd, goofydad, lauri, walrus, desrt, marcy, and all my other dear friends who I see from looking over recent posts are still active in the forum. I love you all very much. And I don't use that word lightly.

Now to the gist. First, I still haven't done tx three years after being diagnosed HCV+. Why? because I'm 67, genotype 1, and have a high viral count, and I don't like my chances [around 35%] with standard antiviral therapy. I haven't been able to get into a trial of the newer meds like Teleprevir and Boceprevir because of my high gammaglobulin and because there are very few trials here in Argentina. Also frankly because Interferon + Ribavirin really put me off. I can't tango while scratching riba-rash.

So what I did was study up on what causes liver fibrosis. I found that it was mostly the oxidation of hepatic cells going on in the liver, so I prescribed for myself - with the go-ahead of a hep MD - a regime of antioxidants. These are PPC [polyenylphosphatidylcholine, as Phoschol], ALA [alpha lipoic acid], milk thistle [as Siliphos], and vitamin E [as mixed tocopherols]. I chose these four antioxidants because they have been tested and shown to reduce hepatic oxidation and/or liver damage and not to have serious negative side effects.

I started taking them almost two years ago, at a point when my hepatic enzymes had both reached 100 and my platelets had dropped to around 115k. A few months after beginning the antioxidant regime coupled with a strict non-fat diet of healthy foods like grains, fruit, and raw vegetables, my hepatic enzymes have gone down to the high end of the normal range [41 and 44 in an April 2011 blood test], and my platelets, which had been dropping steadily for years, are holding at 135k.

I'm content. If, with the aid of this regime, I can hold the fort and wait for the approval of a more effective and less dangerous therapy, I think I've done the right thing. For me.

If this is useful to others, well and good. I have no idea if what I'm doing will work for other people. I offer it as a personal experience. The antioxidants appear to be working for me. My hep MDs [I have two] can hardly believe the results of my recent blood analyses and are totally on my side.

All this said, I plan to have a new biopsy this year because blood test results are not conclusive of the extent of fibrosis. They are supposed to be a sign of current liver cell destruction and liver function, nothing more. Biopsy is no sure thing, either, as many have pointed out here and as more and more articles attest, since fibrosis is not always uniform in the liver as was once believed. But biopsy is the best test we've got. So I'll do another, while sticking to my antioxidants.

I hope you will excuse my long-windedness and my little jokes, and that this info is of some use.

Cheers to all!

Mike

[mike716]

Hi! How's it going? Are you doing okay?

Thanks for the heads-up on CoenzymeQ10. I did some reading about it two years ago when I was researching antioxidants and was thinking of trying it, but then I got sidetracked and never got back to it. As a matter of fact, some of the places I buy my antioxidants from sell cocktails of Q10 and antioxidants like ALA (if I remember rightly), so I might try those.

I experimented with doses when I saw that my regime was working but did not succeed in tweeking the numbers any further. I got my present dosages by comparing info from a lot of websites, in particular that of the Pauling Institute, which has a lot of good info on dosing.

Your point about age is a good one. I've read everywhere that a lot of liver-related and changes occur with age, for example the amount of glutathione we can reduce (in its reduction/oxidation function), which is why I decided to take ALA. Probably the most significant age-related change that affects the liver in hepatitis seems to be immune system changes. But the researchers don't agree on those changes' ultimate effect on liver cell destruction (which some of them claim is due to immune system attack on HCV-infected cells). Maybe it's a six-of-one-half-a-dozen-of-the-other kind of thing, where a decrease in hepatic cell destruction (as a result of diminished immune response to the virus with age) is cancelled out by an increase in viral proliferation (due to infected cells not being killed). Anyway, there are certainly a lot of age-related HCV issues, like the change of the rate of fibrosis progression after about 65, that have not been worked out yet.

Cheers!

Mike

[mike716]

Hi! Nice to hear from you. Sounds like you are doing very well on Tx. Congratulations!

I hear what you're saying about doing a test run, but there are various factors that militate against it, the main ones being the creation of mutation sub-species and then not killing them, and getting the immune system used to Int./Riba. I've had a discussion of these issues with a number of hepMDs and they had no good answers. Until they do, I won't experiment.  The unknowns are too scary.

Cheers!

Mike

[mike716]

Hi, Trish! Thanks for your kind words. I will do as you suggest and post the results of the biopsy, although it may not be for a while. I'm having an ecodoppler tomorrow (I can get one every six months if I want), and I'll post those, with a short explanation of what the test is all about.

Hugs!

Mike

[Magnum]

I often wonder what would have happened if I never treated to this point (being diagnosed in 1994). To tell everyone the truth, I was feeling and doing great until I started treatments. I know some don't like to hear that, but I'm laying my cards on the table. What would have happened?

My neighbor across the street has Leukemia. It's non-curable. He was given 6 months. That was two years ago. Still alive. Again, what would have happened?

Magnum

[paen53]

I was going to PM you about the details of this study you're entering this summer, but if you're willing to elaborate more, perhaps this a good thread for it - and I hope Mike doesn't mind......

What meds are being used and at what doses?

How will they determine if scarring has stopped  and reversed?

In case of liver failure, is a transplant readily available?

I wish you all the best in moving forward with this, Hector, Pam

[HectorSF]

Yes we can live without all of our liver cells functioning properly (fibrosis). This is how a patient with stage 3 fibrosis lives while being asymptomatic. Or the Live Liver Donor who has their entire right liver lobe removed and transplanted into the recipient.

BTW, There are numerous study data showing reversed levels of fibrosis for patients who have stopped the cause of their liver disease. This includes patients with HCV, HBV, alcohol related liver disease, and many other liver diseases. This has been known for many years.

The issue is that if a patient progress to (stage 4) cirrhosis, it is an entirely different “animal”. Cirrhosis is not just more fibrosis. The liver cells regenerate themselves differently, the architecture of the liver is changed (becomes nodular) and the blood vessels change (new vessels are created that cannot accommodate as much blood volume as the normal vessels. As a result, portal vein pressure increases. This portal hypertension leads to many of the common symptoms of decompensated cirrhosis. Encephalopathy, esophageal varices, Caput medusa (dilated abdominal veins caused by the back pressure of blood in the umbilical vein) and various other complications of cirrhosis. These symptoms do not appear when a person only has different stages of fibrosis. .). So it is not the amount of liver cells that become fibrotic, it is how cirrhotic the liver has become which has altered the liver architecture  and its ability to function.

It is still a question that scientists and doctors are studying as to weather all stages of fibrosis and cirrhosis are reversible. I will be taking part in an experimental program for people listed for transplant with decompensated cirrhosis this Summer who will try to eliminate our HCV (which has caused the liver disease) and reverse our cirrhosis. The outcome is unknown that is why this is an experiment. As many of you know it is risky and not advised to treat decompensated cirrhosis with Interferon and Ribavirin. As treatment itself could cause liver failure and possible death.

Thanks.
Hectorsf