Re: NYgirl...Vitamin Question

The thread regarding vitamins was so long, i thought i would start a new one in case alot of people didnt feel like scrolling through the whole thing. I am on Pegasys and have two dr's. One ge dr  for the treatment of hcv, ond one dr who works at Univ. of Penn Integrated Medicine. They both know each other and support each others work. My ge is treating me with pegasys, my other dr is treating my entire body as a whole with supplemnts and detoxification. While he treats many peolple with cancer, he also treats many others, such as hepa, lymes, lupis, etc. I am sure that he uses many products that i have never heard of, but one of them is called Immune Option by Bioimmune. I am not promotin this company or the website, but should you decide to visit it, you will find that thaey have a protocal for the treatment of HCV. However, i should point out, this path shopuld only be taken with your dr knowledge.If you search for Integrated Medicine on the web, you may find a dr in your area and you may want to discuss it. Anyway, i know i am long winded, but the supplements that i am taking have helped me (i belive) stay energetic, good attitude, and i beleive has helped my immune system stay strong. Hope you have success if you research.
Mike

[NYgirl]

Originally this is the article that I found on a hep site that made me question if I should be taking supplements or a multi vitamin. I mean reading THIS it says to me the NP is WRONG and I should NOT be taking one with iron AT ALL.


Nutritional Recommendations
      Conventional therapy consists of weekly injections of peginterferon alfa-2b (pegylated interferon) along with a prescribed dose (usually 800-1200 mg a day) of ribavirin (Rebetol). The treatment interval used with these two drugs is determined by the physician.
       Iron promotes hepatitis virus-induced liver injury and precludes successful treatment with interferon. Verify that liver iron levels have been reduced before starting interferon therapy. To sufficiently reduce iron levels, some patients require withdrawal of blood before beginning interferon-ribavirin therapy. (HCV patients cannot donate blood; therefore, this blood must be discarded.) Be certain that serum iron levels are at the lowest possible tolerable levels (ideally below 60 mcg/dL of blood) while serum ferritin levels should be maintained in the low normal range of 30-80 nanograms/dL. As long as symptoms of anemia do not appear, lower iron as much as possible (under a physician's supervision).

To block iron absorption and lower iron levels, take:

[offshore54]

im not sure what you mean by "NP" in the 1st part of your comment. But, i wouldnt try to dwell into supplemts and what kind to take ect... if you look long enough on the net, you will find claims by everyone that thier product will work. That said, i will restate, you should speak with your dr regarding all supplements you want to take with your dr before you start or after you start tx. I consider myself lucky because i have two doctors thatare treating me and both belive that a smbiotic relationship may offer the best chance at fighting the HCV. Inegrated medicine is not new, but is become more widley accepted throught the med community. I only speak for myself, my tx, and what i belive is working. Maybe, talk to your dr about integrated medicine, or find one. doesnt cost much to listen. Certainly, if it helps, it is worth it.

I have just recieved my labs from 9/7/05 as we speak. I am happy to report a 2 log drop, enzymes were just above normal, and all other results with the normal range. I feel great about it and lucky (i kinda did something stupid during my tx). sorry if i am long winded. just trying to help.

Anyway, to all who wrote to me about my last thread, titled "HVC", i thank you for your support and i guess i am lucky with my lab results. I know what is important in my life, and my tx is #1 (next to God, My Wife, and my two little boys)

[dancegirl54]

Jim,

Yes it is Dr. Afdhal - he is extremely personable besides being one of top docs in the field.  And Amie had the blood test Fibrosure, AND the scan.  Don't have results yet, I think she goes back the 11th.  The cool thing about Beth Israel is that there is a website where you can register and see all of your labs, etc. My daughter isn't registered yet, but I am and was amazed the first time I logged in and saw detail of all my blood work. Anything that isn't in the normal range is highlighted.

And now, Dr. Afdhal's vitamin recommendations - 6 not 8, my mistake

One A Day Multiple Essential Formula
Theragran Nutritional Supplement Multi Vitamin Formula
Drug Emporium One Daily
Twin Labs Daily One Caps Without Iron
Twin Labs daily Two Caps Without Iron
Nature Made 11 Essential Vitamins

I am counting the few months until my son turns 18 so he can be seen at Beth Israel as well.  He is currently seen at Children's where the philosophy is immediately treat.  We are waiting until he turns 18 but WILL schedule a biopsy because of his high ALT levels. He has been on Depakote for a long time for epilepsy and NEURO says that is definitely a factor, but how you can separate what is from the meds and what is an accurate level I dont know. Does anyone have any experience withthis?????

[cuteus]

was that article posted at a site that also sells supplements? It is quite a lengthy and profitable sounding list!
I feel it is going a little overboard to take so many supplements for so many different things. Some of the nutrients are multipurpose and taking an additional item might be overdoing it financially and nutritionally. just my take.

[dancegirl54]

Just heard that Children's Hosp in Boston is going to be getting a Fibroscan for their clinical trials - no time frame yet. Dr Maureen Jonas is son's Dr

[offshore54]

i think she found that info at life extensions website (lef.org) under protocols. and i agree, does sound like alot to have to buy and ingest.

[Tallblonde]

You're right....it is the protocol from the Life Extension Foundation website.  However, LEF is actually a very legitimate and reputable organization.  Califia introduced me to it in one of her posts a year ago and I've found it to be a very worthwhile entity.

That being said, I do agree that it's not realistic to take every supplement listed on the LEF protocol.  Who could afford it?  The SAM-e alone would be more than $40 per month.

Susan

[NYgirl]

My doctor told me just take a multi without A, K and Iron.  Where in the world do you find such a perfectly hep made vitamin?

Ack.

He said to worry most about the A and Iron but still what vitamin comes without A?

So I'm back to the drawing board.

[cuteus]

did he specify vit a from oils or the beta carotene?
not all vitamins are absorbed the same way. I switched to beta carotene. It does not accumulate as the oil based one.

[jmjm530]

Dancergirl 54's list from Dr. Afdahal is as good as any. Just pick one. Everyone has a different take on what vitamins to take so you'll never get a consensus.

-- Jim

[Forseegood]

Just wanted to weigh in here.  Anyway, I do take a lot of the vitamins and herbs on that list, but not all, and for once Cuteus and I agree on something regarding supplemention, ha ha! This list is overlapping and has way too many things on it. For instance, if I remember correctly, it says whey protein (I get a really cheap designer whey protein that costs 10 bucks for a 2 month supply) to get your, glutathione, protein, etc. and then it says to supplement with the same stuff that is in the whey. I just gave it a quick glance, but I saw other examples of this. You can only take so many anti=oxidants.

Personally, I cover the waterfront when it comes to supplentation, but I make a relatively good salary and I can afford it, I know many can't so it's good about the Big 3 Plan for people who need a more economical regimen. And it's all relative, I know people who take more than I do.

I think Tallblonde put up a post with the Big 3, if I remember correctly, it was Selenium, ALA, Milk thistle, if I'm correct. You could do this with a multi w/out iron. That would be a cheaper way to do it, I would also add in Schzandra Berry and I take an herb Ashwaghandha that I love, it's a genseng. I personally take more in my regimen; and I personally don't take the milk thistle, too strong for my own chemistry. I also know of a much cheaper way to take Chinese herbs, NuLiver. Though chinese herbs are too strong for my particular system as well. I think Tallblonde takes NuLiver, she put it into one of her posts, if I'm not totally spacing it.

There is a really good site, with a guy who has Hep C himself and he's a very good guy (I know many that know him besides me) and he really knows his way around herbs and vitamins, he's been in the alternative therapy thing for many years, with a focus on Hep C. He will tell you what a good low cost regimen is, and a more   comprehensive regimen, etc. He even talks to people on the phone for free. He is connected to an outfit who sell Milk Thistle, (a very economical one I might say) a kind of milk thistle that is supposed to be the best kind of milk thistle, but he'll talk to you whether you buy the stuff or not...he's a really nice guy.

He's also about people being healthy, he'll be the first to say that if you are a higher biopsy grade, you should do conventional treatment. Some of these people are fanatics and think you should do alternatives no matter what, he's not like that at all. You don't even have to talk to him, you can just look at his site and see what he recommends, but he will answer your questions about it if need be. The site is

http://www.hepatitis-central.com/

If you go there, look to the left and see A Survivor's Story. It lists the supplements and a lot about how they work and what to look out for, etc. He also recommends that you go through conventional doctors, etc. There is also some good stuff on diet, etc. Anyway, he consulted with me for free and he knew upfront that I don't even take milk thistle. I've been taking supplements for like 15 20 years? and there is a lot to know, you shouldn't just take this stuff willy nilly. I'm glad to see that some hepatologists are recommending them as well, mine does, but a lot of people in this area take them so I guess my doc was exposed to them early on. I am really grateful that I can take them, they make me feel a lot better, and that's important to me.