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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
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
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
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
Hi! Thanks for the encouragement to post. I tend not to do it much any more so as not to clutter up the forum with a lot of irrelevant talk when so many people are sicker than me and need urgent help. In this case, my continuously improving bloods finally forced me to share the info.
I feel poorly about not contributing more to the forum and helping newbies and others who have questions I might help to answer. But I've gotten static for my opinions, admittedly highly non-conformist, and I have enough trouble getting along in a semi-hostile foreign country without that.
How are you doing? What's your current status [virological, not matrimonial {grin}]?
Cheers!
Mike
I feel poorly about not contributing more to the forum and helping newbies and others who have questions I might help to answer. But I've gotten static for my opinions, admittedly highly non-conformist, and I have enough trouble getting along in a semi-hostile foreign country without that.
How are you doing? What's your current status [virological, not matrimonial {grin}]?
Cheers!
Mike
Correction to my original post: My hepatic enzymes didn't go down to within normal range a few months after starting to take the antioxidants, as is implied there. It's taken two years to get them down that far.
On the other hand, they did start down soon after beginning the program and have steadily diminished ever since.
Maybe I should add that I've always been highly reactive to external and internal biological changes. I'm thin, have a fast metabolism, and have kept myself in overall good condition through the years. So I'm a good subject for drug trials like the antioxidant regime.
M.
On the other hand, they did start down soon after beginning the program and have steadily diminished ever since.
Maybe I should add that I've always been highly reactive to external and internal biological changes. I'm thin, have a fast metabolism, and have kept myself in overall good condition through the years. So I'm a good subject for drug trials like the antioxidant regime.
M.
"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. "
"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. "
Hi there, Mike. Nice to read the above statement that you are content. That's been a little hard to come by for you as you sifted through everything and there is a lot to sift through. This is a pretty individual journey. While your choice might be very different from what some might go for, it's a rather lucid explanation of your choice and why it's good for you. I wish you well with this. Hope you'll drop in with results of that biopsy as well.
Hope you're keeping well in other regards and that life is good.
Regards,
Trish
"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. "
Hi there, Mike. Nice to read the above statement that you are content. That's been a little hard to come by for you as you sifted through everything and there is a lot to sift through. This is a pretty individual journey. While your choice might be very different from what some might go for, it's a rather lucid explanation of your choice and why it's good for you. I wish you well with this. Hope you'll drop in with results of that biopsy as well.
Hope you're keeping well in other regards and that life is good.
Regards,
Trish
Hey Mike,
Great to hear from you. Was actually thinking of you these past months
and I am happy to hear you are doing well.
You remind me of my pre tx trials&tribulations and who knows if I ever have to go back to
that.This is how crazy of a world we live in , before I started my tx (50wks ago) I was
kicking and screaming not wanting to do it and today I extended my tx simply because
of own choosing to be more comfortable.I totally respect your point of view.With my
current level of experience I would try 4 - 12wks of SOC if I were you to see how well
you respond. It could be far better than the 35% you think of and you will never know
unless you try. A couple of months of tx to check your response pattern are really
not that bad. Early viral kinetics are still the strongest predictor !
Just my two cents.....
Again great to hear from you and let`s stay in touch.
b
wk50 of 60
Great to hear from you. Was actually thinking of you these past months
and I am happy to hear you are doing well.
You remind me of my pre tx trials&tribulations and who knows if I ever have to go back to
that.This is how crazy of a world we live in , before I started my tx (50wks ago) I was
kicking and screaming not wanting to do it and today I extended my tx simply because
of own choosing to be more comfortable.I totally respect your point of view.With my
current level of experience I would try 4 - 12wks of SOC if I were you to see how well
you respond. It could be far better than the 35% you think of and you will never know
unless you try. A couple of months of tx to check your response pattern are really
not that bad. Early viral kinetics are still the strongest predictor !
Just my two cents.....
Again great to hear from you and let`s stay in touch.
b
wk50 of 60
Always good to hear from you. If you haven't done any research on CoEnzymeQ10, it's worth a read. Though generally advertised as an 'anti-oxidant', it has special importance to cell mitochondria, an area where HCV does a lot its worst damage. It's something we absorb enough of from a healthy diet until we hit our fortys, at which point our body's ability to assimilate it decreases.
Take care.
Take care.
Ive always been a believer that everyones experience is relevant and lots of times some irrelevant chatter is good to take our focus off this virus. There are so many of us that are non responders etc, we need to hear ideas that can be investigated to help us "hold the fort down" until the better treatments are unleashed. I feel that time is right around the corner. Unfortunately for me I think now is the time to start moving. I have some recent posts you can look at to see what is going on and I also started a journal since I expect to start treatment about may 15th if i clear the screening requirements for a telaprevir dosing study that is going on. BTW some study sites for this trial are in Brazil. Not exactly where you are at but at least on the same continent. I was hoping to hold out for the non interferon drug cocktail but the fibrosis seems to be pretty active right now for me. I will have my biopsy Friday the 29th and it will be interesting to see how it compares to all the blood marker tests I have done to keep an eye on my liver.
Phooey on the critics... Keep posting...
Phooey on the critics... Keep posting...
hi mike, glad to hear antioxidants work for you too, having an active virus in the liver the result is even more interesting.i am doing the same on hbv but easier because antiviral clears virus
i am also using antioxidants especially blackrice and blueberries/berries in my diet and lately resolved all fat tissue from bmi 26 to 21 now.it just took about 3 months.fatty liver US on end of may to see if it cleared fat in the liver too
i post to suggest also glutathione in liposomes from livonlabs.
glutathione without liposomes is useless because it can t be absorbed but with liposomos it will get inside cells
i used it mainly to lower intracellular cholesterol (artherosclerosis article reversal of laques by 3 months in mise) not only because it is know as the most potent antioxidant.all chol fell down a lot
hep tech trials will be finished in june we might see from them how antioxidants work on severe fibrosis too
Hi Mike I dont have much to add except to say it's awfully great to see you posting.
I'm going to add some more supplements into my diet (I'm getting old and my liver isnt getting any younger either) so I appreciate the input.
I hope they come out with an inf/riba free drug soon for you and for everyone. Then you can keep on dancin'.......dancin'.......dancin.........
Love Deb
I'm going to add some more supplements into my diet (I'm getting old and my liver isnt getting any younger either) so I appreciate the input.
I hope they come out with an inf/riba free drug soon for you and for everyone. Then you can keep on dancin'.......dancin'.......dancin.........
Love Deb
Hi; I don't know whether you remember me but I think you made a wise decision; 67 high count gen1 to me is a no brainer for not to start TX; interf/riba is a poison; you have really nothing to gain from it except feeling like dogsh$$; for me, TX didn't stop with the last pill, it's over two years past and I slowly get back to somewhat of a normal life including all the physio/psycho and everything else; my accountant, he died with 93 a few months ago, had gen1 since 1942 as he got a transfusion in WW2; at this point, trying alternative ways seems the way to go; don't expose yourself to a few years of torture if you don't have to...
It's good to read that your supps and healthy lifestyle seem to be keeping your liver inflammation in check. I'm post tx and SVR now, but still keep to a healthy lifestyle to keep my liver from deteriorating anymore AND in hopes of reversing some of the damage done. Even if it's only a stage, it's one more step away from where I am currently. I strongly believe it is possible, even with cirrhosis to turn things around, barring any other issues that may come into play as I grow older.
I don't know what the results were of your initial biopsy, but if enough time has passed, then another would be a wise decision. Keep an eye on those platelets and some of the other blood markers like albumin, INR, bili and such as they can often give a head's up with further liver damage.
Hopefully one day in the near future, IN will be out of the mix and new drugs will prove to be more efficacious and less toxic for all.
Best of luck to you, Pam
I don't know what the results were of your initial biopsy, but if enough time has passed, then another would be a wise decision. Keep an eye on those platelets and some of the other blood markers like albumin, INR, bili and such as they can often give a head's up with further liver damage.
Hopefully one day in the near future, IN will be out of the mix and new drugs will prove to be more efficacious and less toxic for all.
Best of luck to you, Pam
also this discussion might be useful about a recent study that linked chol to fibrosis and of course excess of chol or oxidated chol is linked with oxidative stress
http://www.medhelp.org/posts/Hepatitis-B/formation-of-fibrosis-cirrhosis-due-to-cholesterol-fat/show/1496407
what we have on hbv cannot be applied to hbv because our antiviral entecavir reverses cirrhosis on biopsy by 3-6 years even with no antioxidants
http://www.medhelp.org/posts/Hepatitis-B/formation-of-fibrosis-cirrhosis-due-to-cholesterol-fat/show/1496407
what we have on hbv cannot be applied to hbv because our antiviral entecavir reverses cirrhosis on biopsy by 3-6 years even with no antioxidants
hi yall!! this is my first post, im hep c 1a, im on week 25 of 48 and whew these sides are no joke,mainly the first 2 months..gotten better as ive gone along, but always sumthin!!! i think of it as a marathon not a sprint..and marathons are plenty hard..i wish my dr wouldve waited till i could take less interferon, from what ive heard even new meds will be along with interferon, but only 6 months instead of 48 wks.. ive been clear since 12 weeks.. thank u Jesus!!, but still have a long way to go..lot of skin issues right now and my hair is falling out somewhat..hello wig!!! maybe i can get a real cool purple one or somethin..haha..tryin to take as little pills as possible, everything has to go thru liver..one multi vitamin and advil after shot also have acid pills on hand, that started fairly quickly..i pray for all of yall to get clear of this mess and move on..it sure has me doin some internal changing..not takin anything for granted anymore!!! wake up call really for me.. hope yall have a happy Easter!!! cheryl
You said: "...my Gastro said Fibrosis is irreversible, even with treatment,..."
I'd get a new doctor fast.
Where has this guy been - under a rock?
There are so many reputable sources that dispute that I can't believe a gastroenterologist actually said that.
Mike
I'd get a new doctor fast.
Where has this guy been - under a rock?
There are so many reputable sources that dispute that I can't believe a gastroenterologist actually said that.
Mike
good results - always good to remember our own hepatic stellate cells are the troublemakers responsible for fibrosis generation. If you can keep their activity in check you can afford to continue living with the virus, though in the end eliminating it is the only cure. Of course knowing whether the supplement regime is really protective is the issue. Improved overall QOL and normalized enzymes seem very promising but annual fibroscans are probably a good backup check. Thanks for the update!
"...my Gastro said Fibrosis is irreversible, even with treatment,..."
Did that come from the Gish group from CPMC? That was not their position when I last spoke to them.
Mike - Good to hear from you. When I worked for huge bank, we did a giant market research project and uncovered that customers wanted "easy banking". So they did a bazzilion dollar ad campaign swearing that they had the easiest banking - no new toools, no new services, just show them an eagle and tell 'em what they want to hear. In that sppirit, I'm adding Tango Dancer to my medhelp profile. Thanks for the tip :)
Please be sure to watch your liver carefully, as the consensus seems to be that fibrosis pregression is non-linear. It can sneak up on you. I know this too well. Your supplement cocktail seems to being doing it's job. Maybe I oughtta order up some more Phoschol. That's some pricey swill that tastes ghastly.
Did that come from the Gish group from CPMC? That was not their position when I last spoke to them.
Mike - Good to hear from you. When I worked for huge bank, we did a giant market research project and uncovered that customers wanted "easy banking". So they did a bazzilion dollar ad campaign swearing that they had the easiest banking - no new toools, no new services, just show them an eagle and tell 'em what they want to hear. In that sppirit, I'm adding Tango Dancer to my medhelp profile. Thanks for the tip :)
Please be sure to watch your liver carefully, as the consensus seems to be that fibrosis pregression is non-linear. It can sneak up on you. I know this too well. Your supplement cocktail seems to being doing it's job. Maybe I oughtta order up some more Phoschol. That's some pricey swill that tastes ghastly.
He stated that Fibrosis is "dead tissue" and how can you bring dead tissue back to life?
Magnum
Magnum
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.
Sounds like Cirrhosis is what he's talking about.
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
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