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475555 tn?1469304339

Antioxidants, blood analyses, and fibrosis update

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



46 Responses
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475555 tn?1469304339
Pretending to dance tango? Shame on you! [grin]

I can't be certain the Phoschol does something, but I kind of think it does. There's certainly been a lot of research published on its hepatoprotective qualities. How much were you taking? Three caps at a throw sounds like too much. I do two caps a day, which is more or less the average of opinions on dosage. If you have trouble swallowing them, what about rolling them in something sweet like maple syrup? Phoschol caps are sticky and the maple syrup should adhere well.

Why not actually try tango dancing? It's fun, good exercise, and an acceptable way of getting close to women [sometimes too close]. After dancing they'll be ready to go for a spin in your SUV.

Mike
Helpful - 0
92903 tn?1309904711
I'm only pretending to be a Tango dancer - its good for my image. Like driving around in a SUV when you never leave town.

Liquid Phoscol's just a tad cheaper. Even though it tastes vile - it's easier for me than 3 big gel caps. I haven't used it for a couple years. Probably I should - expensive as it is, it's a bargain if it does anything.
Helpful - 0
475555 tn?1469304339
You wrote:

"What would have happened if I never treated"

The answer, I think, is that no one knows. There's just no way to prognose liver disease progression. I've read maybe thirty studies of fibrosis progression, and there was no conclusive answer in any of them.

Treating is a gamble. So is not treating.

In my case, I'm just too healthy to run the risks of treating. But I may very well live to regret that decision, which is really only a temporary one. However, if my tests start to go bad and I progress to F2/F3, I'll reconsider. Hopefully by then there will be better treatments.

I don't know your HCV history so I can't really give an informed opinion on your own decision. But you had your reasons for treating when you did. There's nothing to gain now from looking back. Life's easy in hindsight, but we don't get have that luxury, so why torture yourself about it?

Mike
Helpful - 0
475555 tn?1469304339
¿Vos bailás a Piazzola? Me extraña mucho.

M.
Helpful - 0
475555 tn?1469304339
So you've taken up tango dancing? Great! Now we have something serious to talk about [grin]. If I can give you any help with it, just let me know. I've been at it for ten years and even a slow learner like me picks up a few cool techniques in that time. Where are you taking lessons? Try to study with Argentines if you can. Not many other people move the right way for tango. And it's all in the way you move...

There's a lot of good tango music, the good bands and singers from the 40s and 50s, on youtube. Try plugging in Miguel Calo, for example, or Osvaldo Fresedo.

You take liquid Phoschol? I never heard of it. Is it cheaper or something than the pills? I get mine from Betterlife. $139 for 300 900mg caps. What are you paying?

M.
Helpful - 0
475555 tn?1469304339
I had poor luck with Fibroscan. You may recall my serio-comic Fibroscan stories posted here two years ago. Three scans in two months with widely differing results. I think the machines work, it's the human operators who can't be trusted. Yup, MDs.

What we need is operator-less fibrosis tests. A machine that you crawl into, press a button, and get a readout, like old scales at drugstores. But that wouldn't improve AMA Inc.'s profit margin.

M.
Helpful - 0
475555 tn?1469304339
Wigs are cool, Cheryl. Even people who haven't lost their hair use them. I'm partial to the blue and the orange ones, myself [wink].

M.
Helpful - 0
475555 tn?1469304339
Hi, Pam. Congratulations on your successful treatment. I believe you may be able to regenrate some liver cells and drop a stage. Maybe it's wishful thinking to believe that, but from all I've read about the body it does heal if the infection or other attack is removed. Keeping healthy is the way to do it.

I had a biopsy in 2008 right after I was diagnosed. It gave about F1/F2, A2. I say "about" because the slides were seen by three different MDs and they had conflicting reads on it. I had a Fibroscan (actually three Fibroscans, but that's another story) a year later that gave the same.

The platelet drop scares me because I have recently been having maxillary bone loss and need periodontal surgery, and platelets are what make that work so they tell me. For the moment my platelets seem to be holding around 130k.

Cheers!

Mike
Helpful - 0
475555 tn?1469304339
Hi, Loli. Thanks for the good words. It helps a lot to know there are people on my side in this. I get to feeling pretty lonely out here, like I'm the only one in the world who isn't Tx-ing.

M.
Helpful - 0
475555 tn?1469304339
Debby! How the heck are ya!? Long time no see.

Don't give me that stuff about getting old. You look great. Or did you run those pix through Photoshop? . . . Just kiddin, Debs. . . Don't get mad . . .

Yeah, gonna tango til I drop.

Hugs and kisses.

Mike
Helpful - 0
475555 tn?1469304339
Hi, Stef. Congrats on reducxing your fat tissue and cholesterol! I will check out the glutathione liposomes. I read that taking glutathione was ineffective, which is why I'm doing the ALA, but maybe with liposomes it will work. Would be nice.

What are these trials ending in June?

Cheers!

Mike
Helpful - 0
475555 tn?1469304339
Hi again. Sounds like you are probably making the right decision to go ahead with the Telaprevir trial. I don't think the non-Interferon tests are even close to conclusive yet. They're going to have to beat standard Tx to get approval.

How many biopsies have you done? If you've done more than one, you should post the series of biopsy results together with comparative blood data. There are almost no horizontal studies over time of fibrosis progression (biopsy) vs. blood scores in individuals. It's some of the info that is sorely lacking.

Thanks for the suggestion, but I don't think I'll go to Brazil for Int./Riba. + Telaprevir. I realize I may come to regret it.

Mike
Helpful - 0
475555 tn?1469304339
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
Helpful - 0
475555 tn?1469304339
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
Helpful - 0
475555 tn?1469304339
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
Helpful - 0
29837 tn?1414534648
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
Helpful - 0
1477908 tn?1349567710
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



Helpful - 0
446474 tn?1446347682
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
Helpful - 0
446474 tn?1446347682
Viva Astor Piazzolla!
Keep on dancing.

Hectorsf
Helpful - 0
92903 tn?1309904711
This easy-to-read paper is from 2006: http://www.hepatitistechnologies.com/images/reversal_of_hepatic_fibrosis.pdf

Helpful - 0
92903 tn?1309904711
From my hepatologist in 2009:

"No real progress in antifibrotics of late, but hopefully in next 3-5 years?  Your body's  natural enzymes should be good enough (metalloproteinases)"
Helpful - 0
Avatar universal
"Clin Infect Dis. 2011 Apr;52(7):889-900.

Sustained virologic response to antiviral therapy for chronic hepatitis C virus infection: a cure and so much more.
Pearlman BL, Traub N.

Sustained virologic response (SVR) is defined as aviremia 24 weeks after completion of antiviral therapy for chronic hepatitis C virus (HCV) infection. In analyses of SVR durability, the incidence of late relapse is extremely low (<1%). Histologic regression of both necroinflammation and fibrosis has been demonstrated in paired liver biopsy samples in SVR-achieving patients. More noteworthy is the sustained responder's favorable prognosis even with baseline cirrhosis; despite mostly retrospective analyses, relative to nonresponders or to those untreated, patients with SVR have significantly fewer liver-related complications, less hepatocellular carcinoma, and fewer liver-related deaths. Although HCV is associated with insulin resistance, successful eradication of HCV appears to reduce the risk of impaired fasting glucose and diabetes development. In summary, chronic HCV infection is curable with SVR attainment, and with cure comes improved liver histology and more favorable clinical outcomes, in comparison with patients who do not achieve the same therapeutic milestone."

http://www.ncbi.nlm.nih.gov/pubmed/21427396
Helpful - 0
Avatar universal

He stated that Fibrosis is "dead tissue" and how can you bring dead tissue back to life?

how can he be so ingorant, tell him to go back to study.fibrosis is made of alive cells, just different type than liver and is the same and common on many organs not only liver.

on hbv we have an antiviral from 2005 that reverses advanced cirrhosis on biopsy by 3-6years, it just needs to be compensated.i know this quite well because it is happening to me as well

https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B_yFgxI8KNcRODYzYzY4NzItMTkxNS00YTdkLThlMmItZmEzZWMzMzI1MjFm&hl=en

https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B_yFgxI8KNcRYTA2OTRkMmUtYzlmOS00MjgyLThmNjgtYWUyOWI1ZTJjYmFm&hl=en

http://www.hivandhepatitis.com/2009icr/ddw/posters/DDW_Poster1808_Advanced%20fibrosis_cirrhosis.pdf

http://findarticles.com/p/articles/mi_7396/is_330/ai_n56632293/?tag=mantle_skin;content
Helpful - 0
901131 tn?1293744553
He stated that Fibrosis is "dead tissue" and how can you bring dead tissue back to life?
Sounds like Cirrhosis is what he's talking about.
Helpful - 0
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