SST

[SnoWav]

I see they are running Clinical Trials for SST a herb they use in Japan.I know it will not kill the virus just wondered if anyone has used it.

[SnoWav]

forgot to add the link for the trials http://hepatitis-central.com/mt/archives/2006/06/clinical_tria.html   Cheers

[Snookmiester]

Just wanted to post the link, it's easier for people to access that way..

<a href="http://hepatitis-central.com/mt/archives/2006/06/clinical_tria.html">Herbal trial</a>

What you will find interesting, is that participants noticed 20% IMPROVEMENT in liver histology, verified by biopsy of liver tissue. Funny, as over and over again we hear how supplements do nothing.. Curious what those same nay sayers will comment about this trial?

[jmjm530]

Regarding the posted study, it seems preliminary but hopefully the results will be confirmed. It's unfortunate that more funds are not made available for alternative solutions like these. Certainly the drug companies aren't going to fund them. Maybe something like the Gate's Foundation will.

[Kalio1]

I don't hear people saying supplements "do nothing" the jury is still out on that. I think many here realize they could have healing properties. To augment with various supplements DURING treatment is what I hear people advising against because many doctors do not think using them during tx is a good idea as the interactions of them with tx have not been studied.
Taking them before or after treatment seems fine if one choses to do so,complicating your treatment with anything that's effect is unknown seems counterproductive. That doesn't make those people advising against their use during treatment "naysayers" it just means they are being cautious and following their doctors' instructions. If your doctor approves of a supplement on tx then go for it.
TIme will tell if they continue to study supplements if they actually work or not. At this point, it is still an unknown.

[jmjm530]

Well said, Kalio. And as someone who has cautioned against herbs before and after treatment, I still think *caution* is the operative word, but that's a far cry from being against herbs in general. Talk to your doctor, read the studies, poll internet groups like these, and make up your own mind. I'm currently looking at herbal remedies right now for several treatment related skin conditions. I'm treading very softly, but treading. YMMV.

-- Jim

[Snookmiester]

Funny how different minds percieve the same situation.. Every other post on this site is BS about don't do this, don't take that, ONLY take the PHARMS overpriced solution to what some may or may not call a "cure".. SVR, is it "cure", or is it remission? Well, nobody knows, and none of us will have any definate answers anytime soon. What we can ALL come together and agree on though, is the fact that HIGH ALT's signify inflamation (inflammation). Inflamation (inflammation) in turn causes scarring, leading to fibrosis. If one can lower this "inflamation (inflammation)", one can in turn halt or slow the scarring, or the progression of fibrosis and liver disease.  
For many, many people, supplements offer just that, a tool to HALT progression. A tool to lower that elevation in ALT's, which signifies the destruction of liver cells. Just about every country around the US combats diseases of the liver with herbal supplementation.Why you might ask, can we say lack of insurance companies and large corporate pharmacutical run hospitals. Ohhh, the basic fundementals still priority, that being to heal, not make profit..
Research, hmmmmmmmmmmmmmmmmmmm, who funds medical research? Pharmacutical companies no doubt? Milk thistle was found inconclusive, but beneficial..Hmmmm? It was also found to stop the production of a key enzyme in the liver used to metabolize certain medications, thus the warning about not taking it during tx. It protects the liver soo well that it protects it from the meds? Funny!!
What is even funnier, if you do a little digging, is that there was a study conducted by a Harvard medical student about Dr's and supplements. In this study, only 10% of Dr's polled recommended their patients to use supplementation as a means of combatting disease and health related issues. Yet 58% of these same Dr's admitted to using supplements as preventive medicine in regards to their "own" health, and the health of family members..
Hypocrisy at it's finest!! Dr's own stocks, and recieve perks for those scripts they so eagerly hand out..No money in sending you to GNC, or telling you to change your diet, etc..
I'm not against pharms, heck they got me undetectable.. But for those that have tried tx and failed, there are OTHER options. If you can effectively lower your ALT levels, you CAN slow or halt progression of the disease. It's not the disease that kills you, its the liver scarring, the fibrosis that gets us.
Two sides to EVERY coin!

[jmjm530]

Snook: It's not the disease that kills you, its the liver scarring, the fibrosis that gets us.
----------------------
Exactly. And I'm sure others will disagree, but personally I've always thought too much was made of the virus itself, and that's one reason I didn't treat until I had significant liver damage. If one can keep inflammation/fibrosis progression at bay by genetics, herbs, supplements, whatever, then IMO that's a safer way to go. Treatment to me was a last resort and let me add I'm grateful it worked. Still, others make the extrahepatatic symptons argument which suggests treat at any level emphasizing that hep c is not just a blood/liver disease.  

My doc's take on herbs/supplements is interesting. He isn't against the herbs/supplements at all, his pik is that they can keep some at risk patients from seeking anti-viral treatment.

My only advice for those pursuing alternative approaches like herbs and supplements is to do your research, touch bases with your doctor (doesn't mean you have to follow their advice) and then frequently monitor your liver enzymes when adding something to your regimen. That's my upcoming plan with Roobios tea, which may or may not have raised my GGT last time around. I plan to get a good baseline this time, drink one or two cups of roobios a day for a week and then re-test enzymes weekly for a month.

Snook, exactly how far are you post treatment now and do you have any lingering sides, etc.?

-- Jim

[sailinlady]

Amen.  My husband just relapsed 4 wks post tx.  I've been holding off on my blood because I am terrifyed I will as well.  Herbal treatments are my next step.  He could not handle another year of tx and I'm not too sure I could either.

[jmjm530]

Left out the most important part -- if you're pursuing alternative treatment, hook up with a good liver specialist and regularly monitor your level of fibrosis with using whatever seems reasonable including needle biopsy, fibroscan, blood markers, or a combination. Why guess if something is working when we have tools that will really let you know.

-- Jim

[Snookmiester]

Well, I finished up tx last September, Sept 21 I believe was my last shot date to be exact. So I'm just about 9 months post tx.
I feel pretty good. Hair never came back to pretx thickness, and brain still not firing on all cylinders, but I'm undetectable. Honestly, I beleieve the meds leave us with "lasting" effects. Just the cost of that undetectable PCR I guess? Would love to see some post tx studies done, but who would fund them? Pharms sure aren't coughing up the doe, nor would you find a willing Dr to stick his neck out on the line.Hell of a position for an idependent researcher though. My energy levels are just about back to my norm, and overall I feel truely "healthy".. But what is healthy, as I was born with HCV so I'm not sure how I'm supposed to feel. One thing I'm sure of though, is post tx brought about severe body aches. That is one side that has lingered, and does not seem to be getting any better. Gonna run this by Schiff in August, as with a few pages of other questions and concerns. Specifiaclly this whole remission vs. cure theory.
But in the meantime, poping my supplments to maintain the healthy recovery of my liver. Hopefully, I can opt for a biopsy here pretty soon. I wanna see what these high cost meds real magic is all about!!!

[Kalio1]

Sorry to hear your husband relapsed, it is such hard news after enduring tx, I know the feeling! At least he kept the virus suppressed for the time he was txing and that probably did his liver some good.
take care

[jmjm530]

It's not that the pharm's don't have the money. But what's the motivation to re-test cash cows that are already on the market? My guess is that the drug companies and doctors are just looking the other way, and that no real data will come out until combo treatment is completely replaced by newer drugs, making the whole issue academic. I hope I don't sound ungrateful because it may turn out that combo treatment saved my life -- but it would be nice to know the full story going in, especially for those with more options. It looks like I made it, but should I relapse, I'd first look at any alternative that doesn't include an interferon in it.

-- Jim

[Snookmiester]

Here is an interesting article on Milk Thistle..Funny how the Pharm companies and the medical community here in the US refuses to run trials and studies on herbal supplementation, but who wants to mess with the prescription drug cash cow?

<a href="http://hepatitis-central.com/mt/archives/2006/04/milk_thistle_ex.html"milk thistle link</a>

[Snookmiester]

Sorry, link did not post, let me try again!!

<a href="http://hepatitis-central.com/mt/archives/2006/04/milk_thistle_ex.html"> milk thistle link</a>

[Snookmiester]

Isn't the whole reasoning behind individuals treating to improve health? Isn't it to halt progression, and improve liver functions?
People say combo tx is the only thing available for a "cure"..Well, now, the medical community is stating we might just be in remission. So basically, nothing is offering a cure.. But bottomline, we all are trying to IMPROVE liver health.. Supplements offer that. Do the research, and closley monitor your progress via labs, biopsy, etc..

Here's another link I found intersting..
<a href="http://hepatitis-central.com/mt/archives/2006/03/herbal_componen.html">Liv 52</a>

[Snookmiester]

Yeah, he used the word "cure" with me too. Looked me and my wife in the eye, and said, "cured"... 6 months post tx undetectable PCR, 98% cured.. 2 years post tx undetectable PCR, 100% "cured"..

[Forseegood]

BRAVO, BRAVO, BRAVO.....

[GoofyDad]

Jim says: "If one can keep inflammation/fibrosis progression at bay by genetics, herbs, supplements, whatever, then IMO that's a safer way to go."

This brings up an interesting topic. In HCV pts, higher levels of ALT are released due to increased death of liver cells -- cells which are killed by our immune system as it attacks the virus. When Milk Thistle lowers ALT, is it suppressing the killing of the liver cells by the immune response, and presumeably lowering the effectiveness of the response? Or is the Milk Thistle triggering another mechanism to clean up the ALT after the fact?

Are there advantages to taking Milk Thistle after SVR? With normal ALT? With raised ALT?

[GoofyDad]

<a href="http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=02-073">Here's more</a>.

[friole]

I am so sorry about your husband. We discussesd extensions a time or two - since both he and I were not clear at 12.  I remember treatment kicked his butt and he didn't want to think about it. What is the plan now????/

And how are you - are you?   yOu said you are holding off on the bloodwork?  Is that your 48 week, or is it post a month - can't remember.  Weren't you clear at 12?

I got my 48 week results yesterday -- UND -- sensitivity to 10.  I will do shot #51/56 tonight.  The best of luck to you

Kathy

[sailinlady]

Hi Kathy

CONGRATS on your 48 wk, I'm so happy for you.  How long are you going? I forgot, brain fog still there.

Treatment really was too hard for my husband, emotionally and physically or he would have continued as well.  The doc advised strongly against it.  He has an appointment today so we will see.  Personally, I don't think he needs any other form of tx right now.  He needs to heal and get strong again.  If herbs are able to keep him at bay I'm certainly willing to try it for awhile.

I quit at 47 wks because I was so sick.  It's been 5 wks or so for me.  Although I'm afriad for the results I do have better odds.  I was clear at 12, I am 9 yrs younger and have very little liver damage where he has severe fibrous. I'm 1A, he's 1B, not that it means anything at this point.

Thanks for your thoughts.

Karen

[Xenigma]

I've been going to Schiff for 3 years now and he always uses the word "CURE" with me.  He say's I will "Cure you in 2-3 years. That was last August.
My next appt. at U of M is in August as well.  We'll see how long they say this time for the newer drugs, or something I can take. Actually last August they said I could go into a herbal study but I refused. I'm guessing it was the SST.  Personally, I use remission, not cure.  When the tests can measure down to 0 copies then I will say cure.
Good luck at your appt.
enigma

[mikesimon]

If you've followed my story you know that though I have been undetectable since 2003 and stopped TX in 2004 a biopsy on June 2/06 revealed 30 IU/ml in the serum obtained with the tissue sample. A Heptimax on May 3 and another one a week afer the biopsy  were both undetectable <5 IU/ml. Last week I was with my transplant surgeon and I asked him what percentage of the non transplant SVRs he thought would show HCV on biopsy. He said 75%. I didn't quiz him on this as it was tangential to the issues that we were discussing but his response was quite casual. Before he had seen my biopsy and was looking at my labs over the last month or so he said that it looks like hepatitis. I asked him what the biopsy showed and he found the report and very casually said "yea, it's hepatitis". He wasn't the least bit fazed by this - need I say that I was stunned? Anyway, I will be very interested to hear what Schiff has to say about this stuff. In my opinion I could care less if there is a tiny bit of HCV remaining in my liver as long as my enzymes look really good. They had been consistantly in the teens or low 20s until the immunosuppressive dose reduction. Good luck Snook. Mike

[FlGuy]

How's that bit of riba treating you and any after effects of the blast?

[mikesimon]

I didn't get the blast thankfully. I really don't think I notice the 200 mg. ribavirin as far as how I feel. But I do notice the half dose Pegasys. My platelets dropped form 185,000 to 136,000 after 4 shots and my bilirubin has risen. I attribute the bilirubin  to red blood cell destruction resulting from the low dose ribavirin - at least I hope that's what it is. I haven't asked for a frationalized bilirubin yet to determine whether my indirect or direct bilirubin has increased but I may if this trend continues. Overall, I am doing okay. I'm not too thrilled with the situation but I remain hopeful that this will resolve favorably and quickly. Thanks so much for asking about me. How have you been doing? Mike

[GoofyDad]

I know I speak for others too when I say this. I don't ask very often, but do know I watch for news from you and you are often in my thoughts. Take care.

[Snookmiester]

Wow, 75% of nontransplant SVR's? Boy, I'm gonna have to double up on the supplements now!! LOL!! I'm actually content with my condition, as long as ALT's maintain normal ranges.
Yeah, I'm wondering what Schiff's take is on this, and if it has changed since my last visit. I definately have questions, and will post my findings.. Hope all is well with you!

[Forseegood]

Bravo to you too Chev...he he he....actually, I try to stay clear of this subject, too many mudpies..Glad Snook waded in there though...

[jmjm530]

Well, you guys know me -- I'm certainly firmly in the watch n' wait camp for those geno 1's with little or no liver damage, especially now with so many promising drugs in the pipeline and with signficant trial data projected to be avaliable throughout 07. But that said -- to be "fair and balanced" as Fox news says but isn't LOL -- a lot of doctors still advocate treating all genotypes at all levels of fibrosis. In fact, my doc might be one of them -- never asked -- but I didn't go to him to make a treatment decision, I went to him because he treats hard and agressive. Same with no biopsies for geno 2's and 3's -- the medical community seems split here also. As both you know, I had real problems with herbs prior to treatment and that is why I advise caution and very frequent monitoring of enzyme levels if you decide to introduce herbs or any supplements into your regimen. Still, had treatment not worked for me, I probably would have revisited herbs -- albeit more carefully -- and with a blend that had been studied more as opposed to something I knew little about.

-- Jim

[Snookmiester]

I've seen three Dr's during my tx, and everyone of them would not recommend treating with the current combo, unless absolutely necessary. I was advised not to treat, until my biopsy results came back, and it was sort of a "need" to do..
First Dr was absolutely amazed at the progress I made in my blood labs with herbal supplementation, and actually had me write out what I was taking and specific amounts.

I grew up Jamacia, so there is a HUGE difference in the medical community and the way diseases are handled. Whats funny, is that in most third world countries, PEOPLE LIVE LONGER... But then again, their diets consist of fresh fruits and vegetables, and NOT all the processed and bleached GARBAGE we Americans consume daily. They don't jump into presription drugs, but walk up to the "Bush" Doc, and get an herbal remedy.. We sure have ALOT to learn!!

[jmjm530]

Chevy says: I don't want to see someone this year (maybe three years ago would have been a different story - but given what is in the making...) with little or no damage treating with this type of treatment when there is more likely a more gentler treatment.
-------------------------------------------------------

I think we're on exactly the same page regarding the above. Also with herbs. I'd be reluctant to try them myself given the avail information, but do hope that studies like the ones Snook posted will work out and offer all of us safer alternatives.

As to what my doctor thinks about treating those with little or no damage, we never had the discussion because as a stage 3, I had already made the decision to treat and saw (still don't) no reason to engage him in a discussion that we may be on opposite sides on. He did offer to celebrate my SVR at 6 months over a drink LOL so maybe then I'll ask him.

As to Forseegood, my understanding is that she's thinking of entering the early Vertex trial which I wish she'd think twice about since they're still using peg and riba and in fact with the placebo arm there is no Vertex. But as we all know, it's a lot easier to make decisions for others than when making it for ourselves.

I'm 16 weeks post treatment and strength, weight and most blood markers have returned to normal. ALT is a nice, low 16. Non-detectible at week 12. Still a little brain fog but more troubling are persistent skin problems of an autoimmune nature (seb derm, psoriasis and rosacea) similar to what Ina (Eisbein) is also experiencing. I have no doubt that these were flared by the treatment drugs. A kinder, gentler treatment is sorely needed . It's difficult here to get that message out without being occused of either fearmonging or being non-supportive of those that want to treat. But I really think it would be a disservice to remain silent based on what I've read and what I've experienced.

Hope this finds you well.

-- Jim