Based on HR's recommendation and really good studies on milk thistle I've gone ahead and added it to my day. Two of my doctors are skeptical but agree that no harm would be done. If it has only a protective value then that's okay by me.
I also drink green tea. And I've recently added curcumin to my regime. There's TONS on the Hep C board from HR about curcumin. I've also just started adding ground flax seed to some of my food.
I'd love to see my ALTs lowered but even if its just protective I'd take it.
I think any of these would have value for people w/o liver challenges but especially green tea and flax seed.
I spent some time hunting for an actual list from HR too, but couldn't find it either (I'll be using Gauf's wonderful list, but I hope someone posts that link, too!), and I've been thinking the same vein as you, Meki, though from the other end of the spectrum.
My husband hasn't treated yet, and getting 'clearance' to treat seems to be dragging on and on, and all I get from his docs when I ask about supplements/alternatives (cause though we're waiting, the virus isn't :P ! )... is 'No comment,' so I sorta put that to bed for a while... but CS's & Gauf's numbers are keeping the thought alive!
But ok - check it out.. I'm not STOOOOOOPID... but dang - that left me feeling a bit uhmmm.... how can I say it? Super under educated... LMAO!
Anyhow - I'm kinda looking for a simple fix: A shopping list to go to GNC or someplace with...
And I realize it probably is weight based ratios and stuff - so uhm - I'm lost there again too.
But I thought - heck - if CS can figure it out.. *Ducks* Then maybe someone could explain it to me... Yanno - those baby kind of explanations:
The pill bottle is white with green stripes - it has 30 pills in it - you will take 4 each day only one time - during dinner before sleeping and you should drink 2 cups of water per pill and they cost 29.95 per bottle at GNC.
OR something that simplistic.
Cause when I saw those results - I kinda sat back and thought about it for a couple of days.
I have been trying to incorporate some of Gauf's lists into my daily routine and have fallen in love with green tea. I have been wondering about adding honey to sweeten it. I know sugar is bad for us, but honey is loaded with anti-oxidents. I just am worried it acts like sugar with our liver. Any thoughts???
Also, the theory of prebiotics and probiotics seems to make sense. The prebiotics trap the toxins from whatever we eat in our intestines,so they never have to go thru the liver-they just go thru as waste. Probiotics are the good bacteria, most of us know about Activia and live yogurt cultures-all good for liver lovers.
I always take Milk Thistle.
I think natural things that are beneficial to your liver anddigestive system are good for everyone because everyone they has free-radicals whether they have any kink of illness or not.
"The supplements while on tx question is difficult, because the ones having antifibrotic promise are almost all antiinflammatory, somewhat reducing the initiating events at the dendritic cell/lymphocyte interface.I know this sounds technical. Most of them also have, paradoxically an improving effect on some aspects of lymphocyte function, as the spectracell test clearly shows.
Bottom line, NO CLEAR ANSWER possible regarding use during tx.
But a moderate use of NAC/VitC, TMG, ALA ( those are quite cheap and possibly PPC (since it was actually shown to help the SVR rate) is probably a good idea even during tx. Vit D3 is good, but it would be best to know ones serum level.
Also some Inulin is inexpensive (http://www.raysahelian.com/inulin.html) and a very good well researched prebiotic."
Cannot get Lactulose here in the US without script. Available w/o script in Canada. Inulin is the alternative."
One other thought. I debated whether to post this list on the health page. I decided best not for me to do this as I have no authority on the efficacy or potentail side effects. For now the info is in my profile.
I am a stage 4 so I really wanted to do something in between tox's to "hold" the damage. HR got me going down this path and I am grateful as it seems to be not only holding damage in check, but perhaps even reversing some of the damage!
The "most" important thing to do first and foremost, is a healthy diet and exercise!
The antiinflammatories we are aware of i.e. milk thistle, green tea, curcumin, and resveratrol. These also have other benefits as well. The antifribotics are important for us stage 3's and 4's obviously.
Use the links I have provided above.
NAC/Vit C combo is a must for good liver health. It protects it from heavy metals and tylenol toxicity and is also helpful in fighting viral infections. It is an anti oxidant too.
meki - I went to the Mayo Clinic and UMaryland websites for dosing. It might give a rough idea. then I learned the hard way not to take 300 mg of milk thistle in one shot. Nothing terrible but did get a stomach ache I could have done without.
Someone suggested starting with one at low doses and building up and on to that. Sounded like good advice.
"Some clinicians have found that a combination of silymarin and silibinin, PPC, SAMe, selenium, and several glutathione-boosting supplements not only improves outcomes of patients who are treated, but also decreases the patient dropout rate due to fewer side effects from conventional antiviral therapy (interferon and ribavirin)."
As MT is an antinflammatory, wondering what the concensus is taking on tox. I have always read pretty much no,no,no, so maybe it is time to rethink this.
I was about to ask the antiflam question myself - As I have RA and had stopped my antiflams a while back (except 5 mg of prednisone). I added the flax-boarg oil/cottage cheese to take it's place - up to 2000 p/d (The Budwig diet) and have not had the RA flare I was expecting when starting tx 2 weeks ago (I do have bone ache though).
I also take alot of things on HR's list plus Glyco Gold nutriants. Wonder if I'm over doing it on the antiflams?
If it helps in my 2 week PCR yesterday my Alt had dropped to 37 from 124 at baseline 2 weeks ago. VL is not in yet. I must be doing something right.
I have been on it for 14 yrs with my RA - my adrenal is hooked unfortunately. I have gotten down as far as I can with out passing out. Use to be 15 p/d. So 5mg is pretty good. I have severe systemic RA - 15 surgeries so far. I will be very closely monitored when and if I try to decrease it again. Still trying to get my adrenal to work on it's own with my nutritional plan. Hopefully some day.
>"Some clinicians have found that a combination of silymarin and silibinin, PPC, SAMe, >selenium, and several glutathione-boosting supplements not only improves outcomes of >patients who are treated, but also decreases the patient dropout rate due to fewer side >effects from conventional antiviral therapy (interferon and ribavirin)."
>As MT is an antinflammatory, wondering what the concensus is taking on tox. I have >always read pretty much no,no,no, so maybe it is time to rethink this
There is even a study that showed that MT improved IFN response in the lab.
My view is its still a bit iffy. Not enough evidence either way.
CS, was it you who posted in another thread about Milk Thistle that has been prepared using an alcohol wash and to watch out for that? I couldn't find that thread.
If anyone knows about this, can you explain that please? I want to be able to recommend Milk Thistle to certain people I know that either can't do tx or are between options at the moment and I want to make sure they're taking the right thing.
I am a fan of milk thistle, felt better on it before I started tx. I believe there is enough studies, proof that it helps the liver process, function. Has to be 80% silymarin. I am leary to start back to all my supplements, milk thistle, etc. until my 3 mth. post labs.
Question, as the above list is for those with Hep, can one with SVR (UND?) take a multi with iron? I have yet to find a multi with low iron or low protein, at any stores, healthfood or otherwise. Anyone know one? I do a lot of liquid vitamins, herbs. A disgusting looking health drink-as my son's always called it 'pond scum', lol.
CS, was it you who posted in another thread about Milk Thistle that has been prepared using an alcohol wash and to watch out for that? I couldn't find that thread.
If anyone knows about this, can you explain that please?
You can buy tincture of Milk Thistle but it almost always has alchohol. I found some that didn't.
My understanding was that tincture of Milk Thistle was easier on the digestive tract than the ground up solid version. My conclusion? Just don't stand behind me.
(This is a cross-post from another thread on supplements)
Much better than milk thistle, I think, is IdB1016, also known as silybin phytosome. It's the extract of milk thistle's active ingredient - silybin - conjugated with PC (phosphatidylcholine) to make it absorb better into the body. Here are some companies I found that specialize in it:
........Trader Joes multiple for men.....
Uhhhhhh, would you take another look at my pic ? I mean, after a year together I thought you knew? Lol!
Don't know, seems like you have a lot of balls.
was it you who posted in another thread about Milk Thistle that has been prepared using an alcohol wash and to watch out for that?
Yeh twas me. Alchol is used in the extraction process for MT and probably Resveratrol.
It doesnt have to be as there are other methods, but it helps with extracting the most ingredients.
This is no big deal as it should be evaporated off. But is It all evaporated off.
There is alcohol is some MT preparations. How do you know.
Know idea so if you figure it out let me know.
You just have to be carefull which ones you get and monitor your ALTs and GGT.
Sorry the post to Scratch was meant for you.
>How do you choose the RIGHT Milk Thistle? Thanks.
Dont really know the answer to that.
The reason i choose Legalon which is made in Germany is because its used as a pharmaceutical over there and so I considered it a safer bet.
That and the fact this this brand has actually been studied and most other MTs use its studies rather than run there own.
Life Extensions MT might OK. Its stronger than Legalon.
You should monitor yout ALT/AST and GGT. If they go up stop taking it and choose another brand. Then repeat. Whatever Gauf is using must also be OK.
Just posted this on another thread and thought it should be here as well.
I go in for my 4 week CR tomorrow so hoping for UND. I was RVR at week 2 (went from 2 mil to 200)
I know the treatment is rough but with me the disease it's self caused me great health problems. I developed many autoimmune diseases, RA, IC, IBS etc. and it was all pre- tx. I hope to stop the virus and not suffer more injury. I am on tx now.
It is MY opinion that if our body is not healthy and goes out of balance all kinds of horrible things can happen - I believe in the whole body approach and masking the symptoms with meds is not the solution (though i have to resort to them as well when needed). I believe that we need to help our body as much as possible through proper nutrition and weight management . I agree with HR as to supplements that aid in this process. I have a routine that I follow that has allowed me to titrate off of my anti-inflammatory and most of my pain meds completely and start building my system back up - I have continued my regiment into tx and am an early responder at this point.
My program is monitored by a good friend of mine Mike Ciell, their practice is called Foundational Health Center in Largo Florida. Their data is gleaned from literally hundreds of published research papers by world-class scientists (MDs and PhDs), Linus Pauling and his research partner, Matthias Rath as well as Johanna Budwig and many others.
I have done a great deal of research myself and have come up with "what works for me" at the time. The important thing is to listen to your body and what it craves and needs. Like last night I needed an artichoke and that was all I wanted for dinner - the night before - spaghetti squash with sautéed spinach. I never crave meat. But the same thing happens with my supplements - some days I feel like I need them and take them - others I don't.
But here is what I do every day consistently (note I am small so don't need as much as others might)
Soy and whey Protein drink blended with 4 tbsp cottage cheese, 3 tbl pure flax oil, soy milk, tsp inulin (pre-biotic) and flavored with fruit (frozen blueberries are great) or honey. (I add Glyco Gold to mine, a proprietary mix of glyco nutrients)
Bowl of oatmeal with fresh ground flax seed
1/2 Multivitamin – Centrum Silver
Multidophilus – (acidophilus, Bifidous etc) and 1 acidophilus pearl
PPC – Lecithin – 1200 mg
CoQ10 – 200 mg
Biotin – 1000 mg
Buffered Vit C – 500 to 1000mg spread out over day
Vit E – 400 mg
Cranberry pills 500 mg
The following I take at varied times with meals and not all the same day - usually over 3 days.
B-12 and B complex
Alpha lipolic Acid 100 mg
Seleum 200 mg
L-Carnitine 500 mg
Hyleronic Acid 20 mg
Lugol's Iodine drops as needed
I am no longer on any regular pain meds or anti-inflammatory or IBS meds and have gotten my prednisone down to 5mg from 15. I also do not have a condition that I use to have IC (interstitial Cystitis).I do have some pain but it is manageable - The thing I am fighting with on tx is fatigue which the Glyco is suppose to improve - I'll let you know as I just started that a week ago and it takes 3 weeks.
The Glyco Gold ingredients (for the researchers) are:
Arabinogalactan, D-Ribose, Advanced Ambrotose Complex, glucosamine HCI and Manapol (aloe Vera inner leaf extract)
I also love green tea but my tummy does not like Milk Thistle or most green herbs in capules.
If anyone notices that something is a "no no" on my list please let me know :-)
Also please note I am not a big eater so don't get alot of nutrients from my food.
The jury is still out on the suppliments but I guess you have to go with your intuition some times.
Thanks for sharing your ideas on supplements. My feeling is that the more personal experiences we can put together, the better we can choose our own individual supplement regimes.
As for myself, I just got back to Buenos Aires and am having a hard time finding stores that sell any of this stuff. It´s not like New York, here. I may have to try buying supplements via the Internet and having them sent to a foreign country. Should be quite an experience. My own supplement mix may, in the end, be more determined by availability than need. Or maybe I´ll just have to go the natural way, eat a lot of fish and stuff. Although I think the purified extracts are better for treatment.
Thanks for sharing your list. The only one I worried about was PPC – Lecithin – 1200 mg.
HR put great emphasis on the fact that the supplement the studies showed to help is polyenelphosphatidylcholine. He said that phosphatidyl choline and lecithin were not a substitute and would not get the same results. My husband is taking PPC described above 900mgX4 daily and has shown a lot of improvement. I buy one from Source Naturals because it costs less but if I could afford it, I'd get the one put out by Life Extension Foundation called Hepatapro.
If you meant you are taking PPC and Lecithin, I don't know if that is a good idea because Cocksparrow was pointing out that taking phosphatidyl choline (PC) at the same time as the PPC would cancel out the PPC or something like that. Maybe someone else will chime in on this.
Congratulations on your splendid response,
Great thread! I am currently on tx (r1626 trial), geno 1b and have F2/2 fibrosis. I was taking Milk Thistle and Vitamin C for 6 months pre tx and eating heaps of liver foods. My LFT's were consistantly around 50 (slightly elevated) throughout this time. One thing that I included with this, about a month before tx was flaxseed. Interestingly my baseline PCR results showed LFT's all within range ALT 37, this from screeniing PCR which showed LFT's slightly elevated. It took me a while to figure out what I had done differently, but it was only the flaxseed inclusion. Anyway, win, lose or draw I can't wait to finish tx and start including many of the suggested suppliments here and also from HR's threads. Regards Emi
Mike - had not realized that supplimentss were hard to come by in some places - thanks for the update. Just have to eat real good huh :-)
The sites I use are www.ourhealthcoop.com and smartbomb.com - not sure if they ship your way.
Emilio - You can't say enough good about the flax oil - amazing stuff,
Per my coach - The great thing about the "Flax Cocoktail" is this: It balances your ratio of Omega-3 to Omega-6 oils, this lets the body regulate the inflammatory response WITHOUT inhibiting any of the enzyme systems in your body (you always want the body to be "in charge"...when we start inhibiting systems, we get into trouble (side-effects) down the line. Also this will change the permeability of your cells' membranes - including the mitchondrial membrane. That way you'll "get your money's worth" from the supplements you're taking. (L-carnitine is used inside the mitochondria, if its membrane is "plastisized" very little will get through, also it greatly improves oxygenation to the cells, hence you will have more energy.but in order for it to work right it has to be mixed with the protien (cottage cheese and blended).
Evangelin - thanks for the heads up on the PPC. I am just taking the Lecitihin but will switch over now that I know.
So what do others think about taking flaxseed, vitiamin c, green tea natural on tx? I know there is no set answer here, but would like to hear what others think. And probably should inlcude grapefruit in the equation considering the recently released study. I guess I will have to wait to include Resveratrol, milk thistle and other things post tx. Are there any other tx friendy supps that others rate? Regard Emi
Yeah, it´s probably going to be expensive to import the stuff. I´m looking hard for a wholesale importer in the city. Must be some other folks here who are buying and taking these supplements.
Tell me, does customs make any trouble about bringing the stuff into Australia? Do they charge you duty?
There´s gotta be a way of getting hold of some of these things - like PPC, lactoferrin, inositol, resveratrol, and ursodiol - in industrial quantities for long-term use as high-intake therapies. Otherwise, the prices are exhorbitant.
Seems to me that, just like with generic drugs, there oughtta be generic supplements for sick people.
But, heck, I´ve always been a dreamer and trouble-maker... :]
Thanks for the www.****.com link. Didn´t know that one.
I will post the results of my searches for supplements here in Buenos Aires and around our little planet.
Re the PPC thing, I still can´t find anything that says what the difference between polyenyl-phosphatidylcholine and just plain phosphatidylcholine really is. Also, whether PPC, apparently a lot better than plain old PC, is also extracted from soy lecithin, or whether it´s some kind of special product that isn´t available naturally.
I don´t think we´ve gotten to the bottom of this yet.
No. its NOT just choline, very far from that. It is a polyunsaturated fatty acid attached to phosphatidyl-choline. I do not like to mention any brand names here, but this is too important to let it go into nowhere. Check the brand name hepatopro. This is exactly that PPC compound mentioned in the article above.
No, lecithin ("choline in food?")was used as a control in the Charles Lieber trials and failed to give the same effect, not surprisingly, considering the importance of the fatty acid tail to be polyunsaturated for membane fluidity and functionality
As mentioned before : PPC its NOT just choline, very far from that. It is a polyunsaturated fatty acid attached to phosphatidyl-choline. "Lecithin" is sometimes used synonomous with phosphatidylcholine without the fatty acid, sometimes with it but it is a compound with A SATURATED fatty acid. And sometimes just with a lot of fat, without the phosphatidylcholine.
I read HR´s interesting and informative message on PPC, but it still doesn´t explain the real nitty-gritty, unfortunately. Because phosphatidylcholine (PC) is also a fatty acid, it says so on all the scientific websites. So what´s the real difference between PC and PPC? (Not the difference between choline and PC/PPC, which is what HR has given us.)
And where does PPC come from? (Some vendors of soy lecithin claim their product contains both PC and PPC.)
And why would PC - for example conjugated with silibin in the various Maxithistle-type products - interfere with PPC taken independently, especially if they are both fatty acid elaborations of choline?
There´s a lot that remains to be explained on this important subject, in my humble opinion.
No organic chemist here. Maybe someone can help out with the concepts. If I take the PPC with other junk, namely foods and fats, will that other junk bind to the open bits on the unsaturated tail? Seems we want the tail to bind to our cellular structure, but by the time the PPC gets where it needs to be, its open unsaturated slots might be all plugged up like the public terlets at the ball park after a double header.
You´ve got a good point there, GoofyDad, and I can see quite clearly what you mean thanks to the public toilets-at-the-ball-game metaphor. Ooo-wee...
Truly, it would seem that those unsaturated tails would be just squirming to bind to anything that popped along and would not be waiting until they got to our far-off cell membrane-weakened poor little hepatocytes.
I spent a coupla hours yesterday digging into what litterature on PC/PPC I could find, and there is precious little food for thought in any of it. I will go with HR´s recommendations, of course, but I sure would like to know where the PPC comes from, especially since some of the soy extracts claim to contain it. I mean, if I can get it naturally I´m sure not going to pay some fantasmagoric price to a supposed nutrition lab to put it into a bottle under a fancy label.
I got a sneaking feeling that there´s both PPC and PC in soy lecithin.
Too bad the nutrient/supplement manufactureres and wholesalers are as riddled with corruptiopn as the drug companies. My inner vibes tell me they´re selling this stuff for a 10,000 % profit.
Or am I wrong and Nature´s-Divine-Healthful-Natural-Herbal-Lifegiving-Phytopharmaceuticals.com is really a charitable 501C3, and it costs them a fortune to synthesize PPC in their huge modern labs?
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