Controlling Fibrosis

[ellissg]

First, I've been away for awhile, Chev........DNA is "star stuff", and we are cousins to trees. Your reaction isn't surprising. You lost a family member. Very few people how much DNA we share with the stuff of nature. Our mutual friend, Eva Cassidy, shared your love of trees and flowers. Go to the ABC Nightline web site where the store has a video of a show they did on her awhile back.........sad but beautiful.

I'm on a course to be sure my healthy Liver stays that way. Has anyone been exposed to SAM-e? I've started taking it along with Zinc, Selenium, B-12 w/folic acid (sublingual), Milk Thistle, vitamin E, C, and no iron or niacin, drinking mucho water. I've heard that SAM-e can actually lower ALT enzyeme levels. And I forgot Flaz Seed Oil.

Any comments? I started all this 3 or 4 weeks ago and am feeling great!

Steve

[Tallblonde]

I'm not all that savvy on SAM-e, but I do know that I've seen dramatic improvement in my liver enzymes.  After less than a month of taking 400 mg. daily, my ALT and AST dropped about 50 percent and my joint pain disappeared completely.  However, I can't conclusively credit the SAM-e.  I take most of the other vitamins and supplements you listed, so maybe one of them, or some combination of them, played a part in my enzyme improvment.

In addition to the supplements, I drink 3-4 cups of white tea during the day and 2-3 cups of rooibus (red tea).  The white tea is supposed to have powerful anti-viral properties and the rooibus tea is supposed to help with cirrohis.  I suggest you do a Google search for more information on both of these teas.

I hesitate to bring this up again, but I've also had a significant decrease in my viral load between last November and this past May.  It went from 24,800 I.U./mL to only 1,580 I.U./mL.  I'm not on treatment, so the drop is noteworthy, to say the least.  My hesitation in sharing this is based on the fact that I don't want to imply that my regimin has caused this improvement.  Nor to I want to give people false hope that they'll experience similar results.  Nonetheless, I have seen amazing improvement in my AST/ALT and VL since I began doing all these things.  My theory is this:  if it can't hurt and may potentially help.....then why not do it?

Susan

[ellissg]

Interesting..............I started out at VL 5,000,000, and after treatment it was 110,000. I get checked in 5 months. I'll post the results and will stay on this regimine. Thanks for the tea suggestions.

Chev....................buy that video. It's biographical, with music..............very well done as is most ABC Nightline stuff.

Steve

[seeking the truth]

Sam-E? never heard of this. is this a vitamin?

[Tallblonde]

Do a Google search by entering: S-Adenosylmethionine.  Wal-Mart and most drugstores sell it, but you can find it cheaper online at places like vitacost.com or smartbomb.com

It's a remarkable supplement because it improves mood, joint pain and liver function.  Most people with HCV have problems with all three.

Susan

[Califia]

Somebody call my name?  Hello Steve, good to meet you--another friend of the flora here.   About SAM-e, I've never heard of it specifically lowering for liver enzymes (i.e. reducing liver inflammation), but it has a specific application for cholestatis and it's great for all around liver health.   The only things I personally would want to add to your great regime are phosphatidyl choline (lecithin), the antioxidant Alpha Lipoic Acid  (ALA) and the amino acid N-Acetyl Cysteine (NAC).

What is SAM-e?  It's basically the amino acid methionine in combination with ATP.  What is specifically does is raise glutathione uptake by the liver.  Glutathione is essential for good liver function, especially everything related to the detoxifiction processes.   (NAC and ALA also increase glutathione synthesis and so does whey protein.   The Hep-C virus makes us deficient in hepatic glutathione.)

Good herbal liver anti-inflammatories are your milk thistle, turmeric,  and probably above all, schizandra.

[Califia]

There's an awesome manual on herbs for liver health called Natural Liver Therapy by Christopher Hobbs (Botanica Press) that's really worth taking a look at.   Misha Cohen, OMD is a fine herbalist trained in the Chinese pharmacopeia;  she has great chapters on herbs for the liver and medicinal cooking in her "Hepatitis C Help Book" (St. Martins Press).    Also, a lot is to be learned informationally by cruising the websites of Dr. Zhang, a master TCM practitioner in New York (http://www.dr-zhang.com/) and Subhuti Dharmananda, Ph.d. of the Portland  Institute for Traditional Medicine (http://www.itmonline.org/ ) .   Actually, Subhuti has a lot of nice material posted there about the Honeybush plant that roibos tea comes from.

[Showboat]

Have been looking for schizandra.....read that it is very good for liver function.  I started taking 1000mg milk thistle, 1200mg fish oil, 1000mg Evening Primrose Oil 1000mg, Caltrate 500+D...2 to 3 times daily, plus a multi vitamin and a prescribed "Fosamax"..one a week.   I started the Fosamax about one month ago.

I read that tx can cause bone loss...which I have (tx may have exacerbated this condition ???) ...so after my bone scan, my doc prescribed the fosamax.  I feel pretty good, and exercise in some way every day......will be an interesting journey.....

Forgot to buy my white and roobius teas though...I have green tea...just need to stop drinking my coffee so much~~~~~

[Showboat]

Oh, I forgot....here is an awesome site for natural living:
http://www.drweil.com/app/cda/drw_cda.html.....this has wonderful information........very insightful...

[Califia]

This is awkward...not a commercial plug & I have no fiduciary interest in the following, blah, blah, and neither does the guy who runs the site on a non-profit basis, which is to say a loss ...but it's a good source of information and Showboat, pretty sure you'll find your schizandra there:  http://www.liverfriend.com .   A fuller disclosure:  the guy who runs the site is an old buddy from a Hep-C list I was on in the mid 90s.

[Showboat]

Thanks, I will be doing some reading tonight>>>>  :>)

[DoubleDose]

My take on supplemental or alternative substances, herbal, hormonal,vitamin, or whatever, is this:  Unless the main stream medical community has done serious double-blind research studies, and found a significant benefit from a substance, then I consider it just another 'snake oil' intended to make it's producers rich.  I spent a few years doing a wide range of supplements, mostly out of desperation, and finally realized that I was pouring money down a black hole, with no real proof of any effect whatsoever, and the possibility of random ill effect from toxicity, unknown side effects, poor manufacturing techniques, non-FDA controlled materials, etc. etc.

SAM-e, like most of the other well known, highly publicized supplements has a litany of health claims, with little scientific community corroboration to prove that it helps anything at all.  Don't get me wrong....  IT MAY POSSIBLY have some good effect, but like hundreds of other herbs, hormones, extracts, minerals, etc. , it may just be another way of enriching the people who push these 'alternative medecines'  and I use the word medecines loosely.  I think that the bottom line, if you do the research on SAM-e, is that there is still no validation from the 'real' medical or research community that it does ANYTHING, other than make one just a little poorer.

[Califia]

FYI, Robert Gish, M.D., who is head of the Liver Transplant Center at Pacific Medical Center in SF, and a heavy hitter in hepatology research, has given my protocol his personal blessing.   He also recommends that his patients on tx take SAM-e, NAC and phosphatidyl choline, selenium, zinc and Vitamin E.

[britgirl]

I agree with doubledose. I did my treatment at a very well-respected hospital which sees hundreds of HepC people every year and carries out many liver transplants. I was told that no supplements were needed or recommended. It shocks me how much people spend on these preparations.

[LvdByGod]

check this out..."NCAM" is an arm of the NIH health organization...it talks about complementary and alternative meds concerning hcv...several of these alternatives have been tested and written up about...here is the site...

Hepatitis C and Complementary and Alternative Medicine: 2003 Update

http://nccam.nih.gov/health/hepatitisc/

i have heard nih give a few choices as good prospects for hep c...vit e, sam-e, antioxidents,plus some i forgot...

milkthistle also has been shown to help reduce liver inflamation (inflammation) in some people...

i'm not a good example cause i didn't clear...but, i have been on many of these since the start of treatment...including L-lysine...a great one for immune system! and many of those already mentioned above and more...my great friend Cathy, my nextdoor neighbor, is a bit of a guru...

i find taking alternatives emotionally encouraging as well...cause it makes you feel like you are doing extra to help the condition... and that's a nice feeling!!! i do hope it's more than a feeling though but, we just can't be sure...  my GI, who allowed me to stay on alternatives durring tx, said the new specialist is probably going to make me get off all alternative meds...

i'm pretty sure the reason i failed tx was due to being overweight by quite a bit...i probably needed a higher dose of interferon and riba...and not from the alternatives...

but, to be honest, i did worry about drug interactions with them and the interferon or riba...so, get a drs opinion before starting anything...my first dr said no, and my second dr said go ahead...so i chose to add them...hope i didn't make a mistake on that???...

[ellissg]

Check out the research done in Europe on SAM-e, where it's been widely used for 20 years, and highly recommended by the medical community. We are under the control of the FDA, an organization manipulated by the Pharmacutical lobby, and they are simply puppets of those companies.

Check out the statistics on the per capita liver transplants in the USA vs the world, particular China where the holistic/herbal approach is prevalent.

My ALT spiked after treatment to 128. After only 4 weeks of supplements, it's now 65. And I can't ignore the overall healthy feeling I have, and it isn't coming from "divine intervention".

Steve

[desert woman]

I don't have hepatitis C but my sweetie does.  I heard how good SAMe can be for the joints so I've started taking it.  It has made a big difference in my aches and pains.

Note to revenire:  Thanks for answering my post the other day when I asked a question about SAMe.  My sweetie called his doctor and he prescribed Effexor.  He is feeling a lot better.  Thanks again!

[Tallblonde]

Ellissg,

I'm with you on this one.  It's hard to ignore concrete improvement in your numbers.  It has to be attributed to something.  The point I was trying to make eariler was that it's hard to pinpoint which supplement is responsible for the improvement.  It could be one of them, or a combination of several.  Whatever it is, I plan to continue doing what I'm doing.




Chevy,

Thanks for the kind note.  Yes, I'm re-testing in November, but I'm not expecting a total diappearance of the virus.  That would just be too easy (spontaneous clearance) and my life doesn't seem to be on that path.  I'm just grateful that my condition is as good as it is.  I know it could be a heck of a lot worse.

Susan

[cuteus]

if you are on Tx, I see no problem with antioxidants but milk thistle might interfere with the meds trying to reach the liver. I took it sporadically in the begining of tx and did not clear by 12 wks. could be coincidence, but if others can hope the drop in their numbers is due to their protocol, then I can make this association for myself. bottom line is, if the possibility exists that this herb can interfere, do without until after tx.
My hepatologist reccomended vit e, zinc, and biotin and no to milk thistle, I added the other antioxidants. just something to consider.

[cuteus]

hello sis, you sound better also, hope the loss of the giant friend is easing a little.
my finish date keeps moving, according to how I feel daily...lol.
some days is Nov, others Dec, and still other days the date was YESTERDAY.  It will be this year, that I know.
Now that I found out that my MD does a 4 wk PCR, I might take that in consideration, so that I might know by the holidays the results.
thanks for asking. I wonder how Susan400 is doing, we have not heard from her in a while...

[Amerabrit]

DD:  I agree with you and Britgirl on this one..  My Dr. recommended Vit E and C only while on TX, but what really worries me is that herbal supplements are not monitored nor subject to government regulations so we dond't even know for sure what those bottles contain???????
Having said that, the herbal supplements appear to be working for Susan?  Susan, don't hesitate to post your experiences as there must be so many others out there, who like you, chose not to tx and your experiences are invaluable, especially to those people.  Each of us has to make our own decision regarding the  complex question of tx versus diet, herbal supplements, etc.
As soon as Vitamins and Herbal supplements are controlled by the FDA, I will feel much more comfortable about taking more of them.

[Tallblonde]

I should have stated in my prior posts that I would definitely NOT take Milk Thistle and some of these other supplements if I were on combo treatment.  My comments were directed toward people who, like me, are postponing treatment, or have failed treatment.  I agree that herbal treatments are probably too risky for people on treatment.

Susan

[Califia]

Oh boy.  Why don't I have a handy PDF file?  And too bad we can't archive all this info somewhere so people can just access it?  Or can we?

I'll put a list at the end, so anyone who's not interested in background just ignore the following.

I 'm basically in Susan's situation.  I "failed" monotherapy 14 years ago, and had to learn how to live with HCV until a treatment with better odds came along.   Gish was impressed early on by a fibrosis reduction that had happened after a year of Chinese herbal therapy; I introduced him to Misha Cohen, OMD, my herbalist, and way back in the early 90s they tried to get funding for a clinical trial.   (I wrote the grant material.)    Gish is so comfortable with _wise_ use of  complementary medicine that he was not afraid to contribute the Western medicine section to Cohen's "Hepatitis C Help Book,"  which details how to combine Western and Eastern medicine approaches.   I contributed research to that book--unpaid, of course--so yes, Virginia, I do have more than an idle interest in this stuff.

Miles described Gish's approch very well (in the relapse/nonresponders thread at HepC Assoc) when he quoted him to the effect  that "hepatologists need to pay a lot more attention to anecdotal evidence because it's coming in at a faster rate than clincal studies."    And what Gish told me back in the early 90s was that it was obvious to him that his patients who were doing herbal, vitamin and amino acid supplements were doing far better than his patients who were not.

[Califia]

Okay, that said... I consulted w/ Gish in June.  He recommended during tx:  NAC, 1 gm (2- 500 mg dosages),  Vitamin E 800 units, Zinc 25 mg, once or twice,  3 gms phosphatidyl choline daily, SAME-e 600 mg.   Selenium--did not write down his recommended dosage, but I've taken high dosage selenium (anti-HCC) for years with no ill effect.

The best  treatise I know of on supplements for HCV can be found on  http://www.hepcchallenge.org/Manual/supplements_final.htm .    There you'll find detailed explanations about the rationale behind glutathione boosting and antioxidant use.  Another great source of info is the lef.org site.   Read their sections on  cirrhosis and hepatitis, do a search on "Hepatopro"  for a good intro to phosphatidylcholine and the liver.    

My daily regime, on top of my multivitamin:   NAC 1 gm, SAM-e 400--800 mg, 3 gms phosphatidyl choline, Vit E 800 units, Alpha Lipoic Acid 600 mg, *Zinc 60 mg, selenium 400 mcg.  

*An keeping the zinc high during tx only, per the zinc-carnosine study found at  http://frontline-hepatitis-awareness.com/frontline_hepatitis_beaconfall_e.htm  .    This is not a Gish-recommended practice,  but something I decided to do after a lot of reading.

In addition, a good no-iron multi, powdered & encapsulated (easier to assimilate);  B-vitamins, biotin, C, fish oil, calcium and magnesium.

Two herbal formulas, one to support the system during chemo and the other fibrosis-specific.

Whew!  Exhausting!  It's a lot easier to just swallow the stuff than describe it.   Happy researching...I actually find it pretty fascinating, but at this point even the walls are fascinating.....Over and out.

[Showboat]

I finished tx in May....and, as you know, did relapse.  I started taking these, and do feel more energetic and healthy...although this could also be due to the meds leaving my system.  I have a doc appt in November, so I figure it will be interesting just to see how things go....I hardly even took a vitamin during tx.

[Soleus]

You have to remember supplements are big business to, and many target liver disease because the mainstream treatments are costly and have so many side effects. There are millions of people who can’t afford or tolerate treatment. Or have made the decision to wait for something better to come along. That’s a large market frantically searching for alternatives. Nutritional therapist agree unanimously that a good balanced diet supplies your body with all the vitamins and minerals it needs and then some. Supplements are for people who don’t or can’t eat well. Metabolizing extra vitamins and minerals can just mean extra work for your liver and kidneys. Enzymes can fluctuate considerably and there’s no evidence to suggest that lowering the viral load slows disease progression. So just eat right and exercise while you’re on treatment no matter how bad you feel. Post treatments if your liver is functioning well give supplements a try. IMHO.