Supplementary Teatments and Medical help

[mike716]

This is an attempt at starting a sort of thread dedicated to the topic of supplementary medicines and the medical supervision needed to use them correctly before, during and after antiviral treatment.

There are a lot of people with HCV who self-prescribe herbals and botanical treatments and who use dietary supplements, often without the aid of medical supervision because they can't find a doctor who will help them. I am one of those, and I am very uncomfortable with the situation.

I recently had a long exchange of posts with Marcia2202 about a Dr. Zhang, who purports to offer Chinese supplements to antiviral treatment, but who wouldn't or couldn't explain what effect they might have on the antivirals. This is no good. When this happens, we are stuck either using the sepplements without controls, or abandoning what might be helpful substances for fear they will interfere with the SOC.

Gauf, in this forum, seems to be prescribing a whole slew of supplements for himselfa and apparently has quite a lot of experience in this area, but I can't help wondering if he is getting medical support and help with things like dosing of the supplements and timing vis-a-vis his ongoing antiviral treatment, as well as questions like drug conflicts and supplement side effects.

In my opinion there is an urgent need for collaboration between us patients on the subject of supplementary medicines and herbal treatments, and a search for and sharing of information about MDs who are amenable to helping HCV patients with them.

If others besides myself are interested in this idea, let's keep this thread open and active for such information. I invite anyone who can provide it to post it here. The first question is: are there any MDs willing to help us use supplements? If so, who are they? How can we contact them?

Mike

[CockSparrow]

Any Doctor who is a member of http://www.americanantiagingsociety.com/ should be able to help with supps. Me and Gauf are both taking the same kind of supps adovcated in the above link.

Or you could just treat yourself. So long as you monitor what the supp is doing your own doc will get the idea.

One thing dont take anything that hasnt been explicitly studied with IFN during Tx.
Milk Thistle is a good example of what I mean. Does it help improve results or does it reduce your svr chances. Answer not sure. May help May not. Not enough evidence either way. so dont take it.
NAC ALA SAMe PPC Vit C&E should be ok though.
CS

[gauf]

The supplement question has been discussed at length in the past. The current regimen I and others are taking have studies to back up there efficacy.  A hepatoligist and world renown hepatitis researcher (vetted by this board), has given his precious time and knowledge to this subject. He approves of these supplements only because he has reviewed at length the studies and potential benefits of this regimen for those of us with liver damage. These supplements are also considered GRAS as they can do no known harm in recommended quantities.  I am no expert by any stretch and have been on the regimen 6 mos. All I can say is my LFTs' and WBC has improved drastically. I diet and exercise as well, and believe that combo has helped my situation. (I am stage 4)

Having said that, you are quite right to question anything you put into your body. I did not do this blindly. I researched these studies and talked at length to HR.  I always try to refer those interested in this regimen to check out the previous posts and to google the actual studies.  I am just a guy trying to save his life here Mike, as I am sure you are as well. I have heard both pro and con comments on Dr. Zhang but have no real opinion on his regimen because I am not on it.

Anyway my friend Cocksparrow has provided a very good link on the supps I take if you wish to persue:  

Read these links, Helps explain what each does.
http://www.smile.org.au/OtherMedicalTherapies/HepatitisC.htm
http://www.smile.org.au/OtherMedicalTherapies/HepatitisCRef.htm

Hope this helps.

[mike716]

Thank you both for replying and for the URLs. I will check them out thoroughly.

What about naringenin (contained in grapefruit), the Omega-3 and -6 fatty acids (fish oil), and glycyrrhizin? Do you know if any tests have been done on these substances vis-a-vis SOC, or even general contraindications? I have read they are good for the liver, but I wonder what the cons are?

Anybody else out there know where to get expert info on side-effects and/or SOC contraindications on supplements? It's kinda scarey starting all of a sudden to take stuff every day that you haven't got much info about.

Also, being a New Yorker, I'd really like to know if there is an M.D., especially a hepatologist, in this area who isn't against supplements and who might be willing to advise on dosages. My doctors in Buenos Aires won't discuss the subject. I believe they have no idea about supplements and don't like to admit it.

Mike

[Mary4now]

Isn't there some contraindication with SamE if your taking AD's?

[evangelin]

Thanks a lot for the link.  It puts a lot of good info together in one place. I learn alot from you guys.  
Blessings,
Ev

[mike716]

Here's a great website:
http://lpi.oregonstate.edu/infocenter/

Lots of serious info on all good supplements, from the Linus Pauling Institute at Oregon State University. I read their long article on choline (phosphatidylcholine) last night, and it was the most complete I've read on this important substance up to know. Just thought I'd share this.

By the way, Mary4now, what's AD? I'm not up to speed yet on all these acronyms.

Mike716

[orphanedhawk]

I began my journey with of fighting hepC by visiting an MD who is also an herbalist. She recommended supplements and diet changes. I would think you could find an alternative healer or integrated specialist in NY.  Good luck

AD is short for anti-depressant.

[Marcia2202]

A friend of mine from Australia, who just heard that I'm hep c pos, just sent me this link. They are all so concerned about me and are calling me from all over the world. It's so touching.
Anyway, has anyone heard of this stuff before??? Any experience with it? Sounds way too good to be true. I'm not looking for miracles, but it would be good to have something to alleviate all this fatigue and other symptoms before tx, or after. Not keen on taking anything while on tx, as one doesn't know how it will interfere.

http://www.miraclems.com/

marcia

[Trish77]

CS - anyone, I posted this on the other side but didn't know if I'd catch you .. so double posting.

How do you choose the right Milk Thistle preparation so that you know it's not been cured/prepared using alcohol?  Thought I read in an earlier thread that it can cause elevated ALT/AST?  Info appreciated, thanks.

Trish

[Marcia2202]

I just read somewhere ... can't find the link anymore ... that milk thistle shouldn't be taken when on tx, as it 'flushes' the liver and could take some of the meds out of the system. This would result in interferon being flushed out, before the next shot...

marcia

[Marcia2202]

Here it is, just found it again: It's from an Irish site www.hepatitiscsupport.co.uk

What is milk thistle?

This is a cheap, easily bought herb that contains a substance called sylimarin that is known to help the liver. It is routinely prescribed in other parts of Europe and is believed to help the liver cells regenerate themselves. Many people in the UK take milk thistle to help the liver; it is not believed to have any toxic effects. However it should never be taken while on treatment as it can speed up the liver metabolism meaning the medication doesn't last as long as it should in the bloodstream. It may also interfere with other medication such as painkillers. Always consult a qualified herbalist before starting to take herbal remedies and discuss your plans with your treatment specialist.

[Mary4now]

So, I have heard that milk thistle preperation can use alcohol and there was even a case of someone denied treatment because the alcohol did show up, this was in England I think.  Also Sam E can be contraindicated when using some Anti Depressants, heres the contraindication
Individuals using antidepressants, such as MAO Inhibitors, tricyclics and SSRI’s should consult a physician before using this a SAMe supplement. Individuals with Bipolar Disorder, Parkinson’s Disease, or Manic Depression should not use SAMe. Pregnant or nursing women should consult their physician before using this product.
I trust HR and have yet to apply the supplements.  

[mike716]

Thanks for the heads up on the danger of milk thistle during therapy, Marcia. Same re SAMe, Mary4now.

I haven't started any supplements yet, but I bought a big bottle of Cod Liver Oil at the nutrition shop yesterday. It says it has a lot of EPA and DHA, the recommended Omega-3 fatty acids. Trouble is, it's also got a lot of Vitamin A in it, and I read on the LPI website that Vitamin A is toxic to the liver.

It looks like most of these nutrients/supplements have pros and cons. You get some help, but you also get something that maybe isn't too good for you. Maybe it's a toss-up.

Still, as I don't eat much fish, oily or otherwise, so I'll probably start taking a teaspoon of Cod Liver Oil a coupla times a week. I've read such a lot of good stuff about the Omega fatty acids that I can't resist.

I'm going to buy some flax seed soon, too, I think. And I'm already eating a lot of grapefruit for the naringenin, an antioxidant in the fruit that has recently been shown to block new virus secretion from hepatocytes. I like grapefruit anyway, and it has a lot of Vitamin C, which I think is good for you.

No one really knows if any of these nutrients can help. But I have the idea that there just might be a combination of them that would slow down the destruction of the liver, if not eliminate the virus. Finding that combination is the trick.

Mike

[Marcia2202]

I take Antarctic Pure Krill Oil, 2 gelules every morning with breakfast. It's supposed to be better than cod liver oil, as it comes from deeper unpolluted waters and it's not as heavy as fish oil. Also it's an excellent source of vit D. I really need the vit D, as I will be stuck in Denmark for a while. Gray weather, not enough sun... dr. mercola sells a good one on his site mercola.com. I also take chlorella every day, I've done the krill oil and the chlorella for quite a long time on a regular basis. Don't know if it is okay to do during treatment, but I think it is, as chlorella is considered a food and not a supplement.

Marcia

[mike716]

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:

http://liversupport.com/info1.htm
http://www.ultrathistle.com
http://www.phytopharmica.com

There's an Italian company that's known in Europe for producing drug-grade extracts of plants, and they might have it, too, I just haven't had time yet to check:
http://www.indena.com

And here's a webpage with a recent review of all the trials and literature so far on milk thistle, silybin, and its various preparations:
http://www.bioline.org.br/request?ph07043

(I like web-surfing :] )

Mike

[mike716]

Your krill oil looks pretty good. The real trouble is that it's so expensive. I checked the specs at Marcola's website, and it's only got around 150mg of each of the two Omega-3 fatty acids per dose, for $25 (if I remember correctly). My cod liver oil cost me 12 bucks and has 450 mg per serving. Both have around the same total number of servings. That makes your krill oil fatty acids 6 times more expensive than my cod liver oil fatty acids :]

I agree it's nifty that the krill oil Marcola's selling is liposomed (nice) and has some cool antioxidants (including one he claims to have discovered), but I'm just a poor American and have to watch my budget. We're not all rich here like you Europeens, ya know.

As to the deep-water angle, so oft-repeated by Marcola in his blurb, the whole thing about heavy metals like mercury is that they sink like lead (joke intended), so I'm not too sure that fishing down below is such a hot idea. And the fish oil they sell in the health food stores is all distilled, anyway, which is supposed to remove any contaminants. My bottle of Sonne's Old Fashioned Cod Liver Oil says on the label: "This product is purified by molecular distillation. We routinely test to ensure this product is free from heavy metals and pesticides." So, unless Sonne is putting one over on me, those cod were clean as a whistle before their oil got squeezed into the bottle. You think Marcola is distilling? Cause if he ain't, and your krill were lunching on mercury down at the bottom of the sea...

Happy Omega-3ing.

Mike

[Marcia2202]

Thanks Mike, I love your humor!!!!

With the dollar being so low, things get quite cheap for us, when we buy them from the US, as everything is so much cheaper than here. DK is one of the most expensive countries in Europe, that really sucks. So usually it's cheaper to order stuff from the US and pay import taxes on it, than buying it here.

Regarding the lead in the krill,    that's why I'm taking the chlorella... :-)   ha ha

Marcia

[zellyf]

I've read some stuff (here) about not use PC and PPC together.  Some people are taking PPC based on HR's recommendations.  I think CockSparrow is the one who brought this up.

[mike716]

Have you got a link to that stuff on not doing PC with PPC?

I imagine they might compete, so maybe if you're taking PPC the PC would stop some of it from being absorbed. But taking the PC-conjugated form of silybin is the only way to go. If you take straight silybum, or just milk thistle, you probably won't get enough of it to really help. That's what I get from reading up on it, anyway.

Mike

[Marcia2202]

Hey, that with the fish oil and the chlorella was supposed to be a joke! Am taking the krill oil for vit d and the chlorella is a single cell alga, a green food.... It's good for getting rid of toxins in your system and a good source of vit b. I started taking it when I got mercury poisoning from having my  amalgam fillings removed. The dentist took out 5 in two weeks and my body couldn't keep up with the poison and the detox. I didn't know at the time, that one could have such extreme reaction from the removal. And I didn't know I had hep c either.

Thanks for the links. Vitamin E sounds interesting, very interesting. I'm going to read a little more about it and it's sources. I'd prefer to get it naturally ie from my diet, but vit d I can't as there is not much sun where I live.

Particularly high levels of vitamin E can be found in the following foods:

    * Asparagus
    * Avocado
    * Corn
    * Nuts
    * Olives
    * Red Palm Oil
    * Seeds
    * Spinach and other green leafy vegetables
    * Vegetable oils -- corn, sunflower, soybean, cottonseed
    * Wheat germ

[D977]

I just wanted to add to Marcia2202 that i read where the green leaf Cilantro or sometimes called Chinese parsely is excellent for the removal of mercury from the body. Nice posts
Thanks
D

[D977]

I wanted to mention you need to add chlorella with cilantro to take it out and to prevent retoxification, but you are already taking that which is great.
D

[Marcia2202]

Thanks, interesting... I use cilantro a lot in my cooking. We eat the leaves raw in salads, or sprinkled over food. We keep the roots and add them to woks and put them in stews.

Good to know I am on the right path without even having known about it. :-)

Thanks again

marcia

[Marcia2202]

Have been trying to 'educate' myself on vit e. Not to be taken lightly... One really needs to know how much to dose, as it can do harm if over dosed. Check this one... I think I'll stick to having it naturally in my diet.

www.emedicine.com/med/topic2384.htm


Marcia

[D977]

Yes you are right. Gotta be carefull with the e toxicity .
Good read thanx

I take vitamin e 400 with d- alpha tocopherol and then chelate it with selenium but all in moderation. Just some extra info on the e thingy :))
D

[mike716]

Janis7 has this to say about Vit E:

"Vitamin E, if taken in doses over 1,200 IU per day, could cause bleeding."
(http://www.janis7hepc.com/cirrhosis27.htm)

Sounds like a lot of Vit E isn't too good for people with esophageal varices. You get those started bleeding, you're in biiiiiiig trouble.

Here's another journal article on iron:
"Iron storage, lipid peroxidation and glutathione turnover in chronic anti-HCV positive hepatitis." Journal of Heparoiogy 1995; 22: 449-456.

Here's a quote from it: "The presence of steatosis or increased ferritin levels,
and preliminary data on the relevance of iron as a prognostic factor, prompted us to ascertain whether hepatitis C virus-related liver damage might be mediated by iron accumulation." Sounds reasonable, huh? At least for an experiment.

Some of these articles, like that one, are from a number of years back. Maybe they've been superceded by newer research. Maybe not. But I always figure it's a good idea to go back and see how people were thinking at first about these things. Like going to the sources.

When I was doing bibliographic research on HIV in the 90s, I found some articles in an Australian journal from way back in the 60s that seemed to give the answer to a lot of questions being asked in 1998 and that still aren't answered. They had just been overlooked at the time because nobody could see the relevance. I won't go into it all, but it had to do with the fact that the thymus, the heart of the immune system, could regenerate itself even in adults, although accepted knowledge was (and remains, to a large extent) that the thymus shrinks up and disappears after the teens. Only recently have researchers gone back and shown that the thymus can indeed regenerate itself and create new immune cells in adults. And the thymus is infected by HIV. Interesting, huh?

So, maybe these articles on iron and HCV from the mid-90s aren't all so outdated. Maybe the drug companies funding research said: "Hey, youse guys, lay off the iron shtick, huh? Dem HCVers don't need none of our drugs to get ridda iron, so jes lay off. If ya know what's good for ya."

You never know.

M.

[mike716]

Sorry, that was "Journal of Hepatology", not "Journal of Heparoiogy". (I gotta get me a new computer. This 1993 Hitachi running DOS is puffing :]  )

M.

[dharmaqueen]

i've got a lot of mercury fillings. so i should possibly avoid alpha lipoic acid until i have them removed, right? i've been thinking about this lately, and how glutathione and NAC are also chelators (if i'm not mistaken). that is going to put a damper on my alternative or complementary treatment if i can't take those great liver supplements.