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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
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
Hi, Magnum. Re the irreversibility of liver fibrosis, even if it's true [I'm not 100% convinced of that], according to what I've read we can live fine with only part of a liver as long as liver functions are intact. The liver is a redundant organ: it has more liver cell tissue than we really need, so that we can lose some, as is maybe normal, and get by. If that's the case, then if we halt liver function loss or slow it down below ageing rate, we should be okay. See what I mean? We're in trouble when we lose liver functions, not because we lose some liver cells. From all I've read, and it's a lot, those are the facts.
Of course, if you're F3 or beyond and have already lost essential liver function, all the above is beside the point.
Your experience of four failed treatments and resultant permanent physiological change is enough to keep me off standard tx forever. My looks and my body are all I've got.
I supose you've read about the trials of Bristol-Myers' Interferon-free combo? My brother emailed this April 2011 press release:
http://www.bloomberg.com/news/print/2011-04-02/bristol-myers-interferon-free-combo-cured-hepatitis-c-patients.html.
While I'll be interested to see what your hep MD says, I'm afraid I don't have a lot of faith in the medical profession. I don't speak to a hepatologist unless he or she swears to me that they've never received money from a pharmaceutical company, even indirectly (research funding, publication, etc.). In the age of neoliberalism, the so-called professions have turned into little more than commercial businesses. And what about drug trials where the company conducting the trial pays MDs involved in them for each patient enrolled, in some cases (like in poor countries) more than the MD earns in a normal year?
I'd better not get started on that...
Good luck to you, too.
Mike
Of course, if you're F3 or beyond and have already lost essential liver function, all the above is beside the point.
Your experience of four failed treatments and resultant permanent physiological change is enough to keep me off standard tx forever. My looks and my body are all I've got.
I supose you've read about the trials of Bristol-Myers' Interferon-free combo? My brother emailed this April 2011 press release:
http://www.bloomberg.com/news/print/2011-04-02/bristol-myers-interferon-free-combo-cured-hepatitis-c-patients.html.
While I'll be interested to see what your hep MD says, I'm afraid I don't have a lot of faith in the medical profession. I don't speak to a hepatologist unless he or she swears to me that they've never received money from a pharmaceutical company, even indirectly (research funding, publication, etc.). In the age of neoliberalism, the so-called professions have turned into little more than commercial businesses. And what about drug trials where the company conducting the trial pays MDs involved in them for each patient enrolled, in some cases (like in poor countries) more than the MD earns in a normal year?
I'd better not get started on that...
Good luck to you, too.
Mike
thank you,
I feel the same way about interfuron and riba, etc.
will add your items to my milk thistle.
pitter
I feel the same way about interfuron and riba, etc.
will add your items to my milk thistle.
pitter
Although I tend to fully agree with you, my Gastro said Fibrosis is irreversible, even with treatment, and wants me to treat ASAP. I also take alpha lipoic acid, milk thistle, vitamin D and Grapefruit Juice on a daily basis. I'm also very tempted to wait for a less dangerous treatment. Remember that I've undergone 4 failed treatments already. This has caused a permanent change in my looks and body.
Although I've rebounded pretty well through eating well, not drinking and exercise, the damage has been done. I'm going to run this by the doctor again next month (as to waiting for a less dangerous treatment) and will post his response. The best of luck to you...
Magnum
Although I've rebounded pretty well through eating well, not drinking and exercise, the damage has been done. I'm going to run this by the doctor again next month (as to waiting for a less dangerous treatment) and will post his response. The best of luck to you...
Magnum
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