Why do people take Supplements or herbal remedies while on TX?

This I don

[orphanedhawk]

     I don't believe there are clear cut answers about anything concerning HCV.
           When I was diagnosed I already had cirrhosisI.  did not want to do interferon. I went to an herbalist who is also an MD. She told me herbs and supplements could help me with side effects of both HCV and tx. She also could help my liver but she knew of nothing other than interferon to get rid of HCV. She then advised me to see a GI.

         But to answer your question, I would rather take them, then more knock-me-over-the-head drugs, oops, medicines. I wish I started taking SAM-E sooner. I started taking it for its positive effect on the liver but it also helps with depression. Tx has made me so emotional and the SAM-e has improved my attitude.
                   I am glad there are options in life, aren't you?
  

[MrsOckert]

Geterdone - I found out about HCV in May and started TX'ing in October.  During the interim I found out about Milk Thistle and other herbs.  I started taking MT before I treated - but only to help, not to cure.  When I started TX my hepatologist told me he didn't know if MT would help, but there were enough studies to prove it wouldn't hurt so he told me to continue taking it during TX.

Hawk - I believe I remember reading somewhere that SAM-E was contra-indicated while on TX.  You might want to google that and see if something comes up.  I could very well be wrong - but I think I remember seeing that it was NOT okay to take SAM-E with interferon.

[ladybug52]

Orphanhawk said it well, but here's my story. I didn't take herbs or supplements before tx. I listened to others who took them and found out it has helped with sides of tx. I'm not patient at trying new things, as I want an immediate fix. During tx, I itched. I was afraid to try herbal remedies and find out it didn't work. So instead I tried everything possible over the counter and three prescription meds to stop the itching. Nothing worked. Meanwhile OH tried red clover tea and her itching went away long before mine.
Now, I am willing to try different ways to boost my immunity. I did start eating pomegranites, and drinking pomegranite juice while on tx, and I continue to do so. I believe the antioxidants and extra vitamin c can't hurt. I'm trying to look at herbs, and supplements carefully, and eat foods that are better for my body than rocky road ice cream.
I have been sick more post tx than I have for the last several years. The drs don't include a post tx guide, so I'm trying out things I've heard from others here.
Live well,
Bug

[desrt]

Why did I take herbs before tx?
For other issues unrelated to HCV. Yearly checks of my ALT/AST seemed to show the herbs didn't effect my liver and I never had any sx from them.

Why did I tx with IFN?
I wanted to get rid of my HCV.

Why did I tx with IFN and (different) herbs?
I was trying the 'throw everything at it and hope something works' approach. I asked the guy who formulates the stuff if the herbs would hurt the IFN tx and he said "No, but they might lessen the sx."

Was my gastro constantly annoyed because my bloodwork stayed so close to normal ranges?
Yes.

Am I silly enough to try and draw any conclusions from a single case or to try and convince others they should try this?
No.

[Forseegood]

I think you've gotten some good responses, and I really liked OH's line about this not being a clear-cut issue, there are usually more questions then answers with a lot of HCV issues...at least to me...

When I was first diagnosed, almost seven years ago now, Pegysus was still in trials and about to be put on market...I live in LA and a lot of people here are really health-conscious (and down right afraid of getting older, silly cusses, ha ha) and so there is a culture here of supplementation and herbs, yoga, good diet, etc...I do think what your friends do and what youre used to has a lot to do with our own lifestyle choices, etc...if these things are an alien concept to you, and you don't have any experience with them, and don't know anyone else who does (except message board stuff) and you read some negatives about them and mostly anecdotal positives, of course youre probably not going to be too favorable of them....I  can understand that...the studies on them aren't really big or great and are usually conflicting...

My docs told me that newer drugs were coming, and that I might wait or treat, me, being the chicken that I am and maybe not as trusting of traditional meds as some (and I guess it's up to others whether I was right or wrong to wait, this is something *I* chose) and monitor myself very closely...I had relatively no liver damage and excellent labs, etc...I know I would of treated right away if I was told I had more advanced liver damage...

It's in the last few years that I've experienced fatigue, but the newer trials and everything still had me intrigued...and oddly enough, like 5 months ago now, when I was ready to treat, my doc still thought he could get me into a trial, so now it looks like just a few months more...I'm getting a biopsy in late July, early August and we'll go from there...(I wouldn't get a biopsy at all now, I just took a fibroscan, but they won't let you into trials without a recent biopsy)

Since I had already been taking some herbs and supplements anyway before I was diagnosed, I just went to a more liver conscious supplementation program, while I was watching and waiting....my labs have been very good since, except 3 months when I stopped all supps, then my alt went to 75 or something like that...coincidence? maybe< I don't know for sure... My alts are in the 20's...I never took these things with a view to "cure" myself...just to help with symptoms of the disease and to possibly hold back inflammation and boost my own immune system...

I also think my diet and exercise has helped, but I couldnt tell you what is what, and how much one thing has helped as opposed to another, I don't know anyone who could...but I'm not getting any younger, and I have to factor that into the equasion now...what I did is prob not popular here at this board, and that;s okay with me, I respect what others choose to do with their own lives, and I'm not advocating what I did for anyone else, this is just what I did...we all are captains of our ship afterall...

[anafromtexas]

When I discovered I had HCV December 2006, I tried supplements and healthy lifestyle.  My viral load then was 250,000, after supplements and healthy lifestyle load dropped to 135,000 in about three months.  Now on tx and the sx so bad can't continue treatment until blood counts better, but still on some supplements to include:  CQ10, milk thistle, Omega 3; Centrum Silver; Green Vibrance and Protein Whey.  If I knew more, I might take more, but just learning little by little.  

[Forseegood]

I am also presently getting consults about what to take and not to take while txing...thanks for your response!

[cathi1]

Hoping you don't mind me contributing, not tx yet.  forseegood isn't either so here it is. Started supplements and herbs, running and gym most of my adult life. I did so after taking up gardening. Noticed what happened to flowers I didn't feed nutrients, and those which I did. The difference is incredable.......So, naturally I decided to give myself nutrients also, for the same results. Makes sense right? Dandelion is a favorite of mine, believe it helped with inflammation. Joint pain is a problem,  still, I believe it helps.
I never get near pestisides or herbasides.(spelling?) Quite sure they will further injure my liver. I stay far away from gasoline fumes; hire some one to mow grass and blow my leafs.
Does any of this make sense to any one else?

[Forseegood]

right there with ya cath...my mom is the 1950's type who cleans her sinks with Ajax (without gloves) and I see her head in the midst of all these toxic fumes...YIKES! She's had cancer twice and of course I don't know from what...all I can say is that I take extra special care with fumes of any kind...I even have air filters in my car...in the summers when it's more smoggy here I'm at the beach...remember the 50's mantra "Better Living Through Chemicals"? (think maybe Grateful Dead said the same thing:) I'm not buying it...

[GrandmaA]

I only take Dr. Zhang's herbs. I took some for 3 years before tx and I have only taken 3 during tx (2 are the same). He told me which ones to take. He said don't take milk thistle during tx.  I sent him my labs. He is a liver expert and also an expert in Chinese herbs and these are his own formulas he has made. My sx have been very few. I have no rash  nor itching. Dr. Gish and Mish Cohen wrote a book together about conventional HCV tx and herbal formulas with acupuncture and conventional tx. It is called, "The Hepatitis C Help Book". A groundbreaking treatment program combining Western and Eastern medicine for maximum wellness and healing.

[cathi1]

For real. The ocean breeze is the best filter. Thank heaven for my piece of the Jersey shore!
Air filter in your car? I gotta look into that...
Wish I didn't buy anything the Dead said either...LOL...would be more funny if we weren't trying so hard to undo!
Cathi

[geterdone]

I have not paid much attention surrounding the subject of supplements or alternative remedies

[orphanedhawk]

My doc is part of the Gish group. I decided to look into SAM-E when I found it in Dr. GIsh and Misha Cohens hep C help book.  My doctor didn't object.
  Maybe you were thinking about something else?

[cathi1]

Saw the title of your book. I got excited cause it sounded like the title of a book I have hiding away from nosey people. But, its not the same. Mine is HERBS FOR HEP C AND THE LIVER by Stephen H Buhner. I will go by yours, because you seem to have it right!

[cruelworld]

i think anyone that would try to suggest that herbals dont really give statistically meaningful results, they are crazy. its just that sometimes
the promises of their power to heal can be misunderstood. i beleive that tens of thousands of people get real desired benfits from these ancient sciences.
the only thing that makes it an issue is its lack of regulation as medicine.
many advertisers indirectly promise many things can not happen. it is our job (and i see it being done well around here) to help others filter through the maze
and know the "whole story".

[meki]

Uhmm I feel stupid - cause I've never really done any herbals or anything.

Been exhausted lately that even coffee can't fix. Lethargic, really.

So - last week I went and bought some EMERGEN-C (silly little packet you throw in water and it fizzes). (My friend, non hepper reccommended it) I read through it - no signs of anything flashing red warning lights.

I've tried it uhm 3 or 4 times.

Seems to make a bit of difference.

Dunno if it's because I'm slowly losing the INF shtuff outta my body - and slowly getting better - or if it's actually helping me --- or if I'm just believing that it's going to help me. LOL!

Anyhow - don't know if it would help anyone else --- or if that is what you wanted to know... But I tried it because I was dog tired.

I took Pegasys Copegus because I wanted to KILL the virus.

I didn't take anything during TX - dunno why - never did healthy suplements, etc. ever.

Ah well... Maybe I should have. LOL!

[pigeonca]

I've always found Chinese medicinal herbs to be potent and effective.  I've also used supplements ever since I was a little kid - at minimum a multi-vitamin and calcium/magnesium, C and E - and more stuff since the hcv diagnosis.  I eliminated iron during treatment - changed multi-vites to a brand designed for old people.  Now I'm waiting (and hoping) for good results on my 4 month post tx blood test.  Have resumed milk thistle now that I'm not treating.  

I think herbals can be very helpful for side effects during treatment.  One cautionn: herbals may be natural, but they're still drugs and need to be expertly prescribed.  Doctors trained in Chinese medicine can do wonders with terrible tasting teas.  Accupuncture's amazing too - some people use it to help keep chi flowing during treatment, boosting their energy levels.  Chinese docs may not cure a disease, but they can slow it down to barely perceptible.  TCM is an excellent option for those who for whatever reason cannot presently treat.

[Forseegood]

my fingers are sooooo crossed for you, oh happy day if you SVR!!!!

[Forseegood]

Pigeon: thought you and maybe some others might be interested in this...

Fructose-Sweetened Drinks Tougher on Arteries, etc.


http://tinyurl.com/2vnsk2

[anafromtexas]

I also avoid anything ending with "ose"  dextrose, fructose, lactose, etc.  Also avoid any bread or crackers or cereals starting with enriched, bleached .

[ladybug52]

Check this out also: "
Unlike glucose, fructose is almost entirely metabolized in the liver. When fructose reaches the liver, ...
http://www.karinya.com/sportsdrinks.htm
Probably nothing new to you, but this is the new more informed me!
Hugs,
Bug

[geterdone]

you have a way with words. I posted to get honest feedback from real people who are taking alternatives and if it has helped with the sx

[ladybug52]

Nope, I've been a skeptic anout the whole supplement thing for anything, till lately. I'm slowly getting ready to inch my way in that direction. I have a friend who owns a health food/supplement store and she has tried to get me to try that route for over ten yrs. I had a mind set against it till so many other people get  positive results. I'm just not into looking up anything on my own, or brave enough to try new things without endorsements from others.
Stay well,
Bug

[ladybug52]

"This I don't understand"
"just a little skeptical here"
Why did you post when your mind was already made up? Sounds like you do understand that it's not for you, and that's fine.
But as OrphanHawk said "I am glad there are options in life, aren't you?"
Bug

[pigeonca]

One problem with supplements is that they can really get expensive.  A year or two ago I went on Dr. Weil's web site and filled out a questionnaire in order to find out which supplements I really need.  The results had me spending $150 a month, if I'd bought all the recommended products.  I boiled it down to the essentials and found cheaper sources than Dr. W's own brand.  It still costs me 50 bucks each month, which can add up.