HR is with a company now who sells liver products. You can go to
http://www.advanceliferesearch.com/
Margarette really good thread, I know it is old however it may help someone who can not treat right now or who has gotten to SVR and is looking for something to help them, I know I am :)
I really miss seeing HR's posts on here. I wish he would come back
Congrats again on your SVR. I am very happy for you
Dee
Could you please give me your website again so I can send it to HR thanks Baja
A couple of months ago a poster, StevHepC, postad a link to this study:
which showed that the anti-clotting drug warfarin my help fibrosis in hep c.
In traditional chinese medicine, the herb red sage root is the basis for most of their remedies for fibrosis:
http://www.itmonline.org/arts/hepc2k1.htm
Red sage root (dan shen), or salvia miltorrhiza root, has shown impressive results in Chinese studies, reducing staging, etc.
It is contraindicated for use with warfarin because it duplicates the action. Using both at the same time doubles the effect, potentially causing bleeding problems.
Red sage works by increasing microcirculation in the liver,
"As described in one laboratory animal study (26): "The extract of Salvia miltiorrhiza markedly reduced protein expression of alpha-smooth muscle cell-like actin, which indicates that hepatic stellate cell activation was inhibited during liver fibrosis." The inhibition of hepatic stellate cell activation was also suggested to be the mechanism of salvia action found in an in vitro study (27). The vasodilating activity of salvia may relax the stellate cells (actin is one of the components that contracts the stellate cells) and aid bile flow and hepatic blood circulation.
Spontaneous resolution of liver fibrosis occurs mainly as the result of the action of collagenases, known as matrix metalloproteinases (enzymes incorporating heavy metals; these are partly induced by zinc), that breakdown the accumulated collagen. When new liver fibrosis is inhibited by salvia, it is possible that natural processes slowly reverse the existing fibrosis. Although not yet studied, it is also possible that salvia helps induce collagenase or reduces collagenase inhibitors so that fibrosis recovery is speeded up. It has been proposed that liver regeneration is promoted by salvia through general mechanisms of improving hepatic microcirculation, reducing lipid peroxidation, elevating plasma levels of fibronectin (an antifibrotic agent), and regulating immune responses (28)."
Still Salvia has not been extensively studied in western science, but warfarin is presently being studied, above, and Salvia has reportedly been used quite effectively for treating fibrosis in China.
Mike H
Here's a link with that info:
http://tinyurl.com/6b6rsy
Mike H
Gauf didn't take all of HR's supplements while on treatment because some are anti-inflammatories which HR said may cause a problem on Tx.
HR gave an ok for ALA ,NAC, SamE, TMG, PPC and probiotics. These are the ones I can think of off the top of my head. Milk thistle ,resveratrol and curcumin weren't on the ok'd list. PPC does have anti-inflammatory properties but it had research to prove it helpful to treatment. The way I understood it, HR wasn't saying they absolutely would hurt progress on Tx but they hadn't been proven ok yet. Someone else that read HR's writings may have more to add to this. If you have the time, rereading his original posts will help a lot. You know what happens when things get repeated and passed down...little things get added and deleted.
Ev
Gauf did this regimen while and I believe before he was treating. It was his 3rd go at it and he just posted his SVR.
There is a lot of info in his journal.
Thankyou so much for the updates on supplements and the link to HR's supplements (saves me having to hunt). I have almost convinced a 2 x relapser to join this site and will be pointing him towards your posts.
Here in NZ they simply haven't got anything in the pipeline for him (G3A 2 x relapser, cirrhosis). And if you can't treat, the supplements can certainly slow things down; my own battle before my second tx is testament to that.
I've just finished a 13 hour day at work (OMG - I'm starting to really feel alive!!), and can't manage to copy and paste stuff right now. I'd be devastated if one of your postes gets deleted; just letting you know that many people, for many reasons, DO read your postes but don't comment. Thanks again; prior to my eligibility to treat a second time, I tried so many things, including Ozone, and I was really interested when you bought up "LDN" which was something I hadn't heard of before.
Pure curcumin suffers from a limited bioavailability. There are preparations that significantly improve on this shortcoming. I'm posting just to let folks know that not all curcumin is created equal. Well maybe it's all created equal - but some get's a lift in life.
20 years ago I would have added...
and I like smokin' my 'erb....
Um, gee I just wanted to mention that curcumin is the active ingredient in tumeric.
Its cheaper to just buy tumeric than getting it already capped up from lifeextensions.
I don't know what all the fuss is about.
Some people choose herbs some do not.
Myself? I like coffee :)
Let's keep this discussion to THIS forum. Whatever happened on the other site has no bearing here.
Emily
I totally agree and had a few rounds with the doctor, plus I changed doctors.
But, I couldn't help thinking during tx, what if I was in a position where I couldn't help myself? Who would stand up for me? Who would even know I wasn't getting the help I needed?
I'm not just speaking of the doctor and his staff, I had problems with the health insurance staff and one time with a new pharmacy.
No doctor has ever shrugged his shoulders at me and failed to address my questions and issues. I don't think this is because I'm just lucky, I believe it is because I choose my doctors carefully and then hold them accountable. You have to be your own advocate in this and any other treatment. Don't settle for a shrug of the shoulders. Insist on getting the answers you need and deserve. You are the one with the most stake in it, so don't wait around for someone else to rescue you. Be assertive and proactive with your caregivers and hold them to a high standard. You don't have to settle for less, and you shouldn't. If you do, shame on you!
I appreciate the list of supplements. I made a copy, before this post gets deleted, to research on my own. (everyone seems a little irritable).
Regarding stopping or not treating, I personally would never even assume what another person could or could not do. I have completed a horrible 46 wks of treatment myself. I personally know those who have completed with no sx and others who had to stop because of sx. Treatment has humbled and educated me, I can be more than empathic on this front.
------- You mentioned "when I was in crisis from treatment, they [the dr.] didn't even want to see me". "...issues were addressed by a shrug of the shoulders". ------
These statements seem like the norm to me from the majority of posters on this forum. I learned the same thing pretty early on from my doctors and used this forum to help myself.
It's because of those issues I think everyone should compose a detailed or summary letter after or during treatment. The letter/document should be submitted it to their doctor, health/medical group, insurance company, pharmacy, and maybe a little further. I'm not saying to submit a complaint but information to enlighten these organizations.
Stacie
Hi Denise, I would love to have a civil conversation with you, and I often do with many people on this board, believe it or not. I admit, I can be as argumentative as the next guy, and often pretty eloquent in my language. But maybe you should look at the posts where I get into arguments and see where the conflict starts.
That being said, I agree that I should just not engage when provoked. Getting into a heated argument serves little purpose and there is no winner in an exchange like that. I will try to do better.
I think you misunderstand my post about my treatment experience. The phlebotomist I was referring to was the in-house phlebotomist for blood samples at my Gastroenterologist's office. I was there to get my 6 month end of treatment blood draw for my lab samples. There were no iron issues. There was also no consultation when I quit treatment, or when I went in for that six month EOT treatment blood draw, or even when I got my six month EOT lab results from those lab tests.
The point is that when I was in crisis from treatment, they didn't even want to see me. In fact, they flatly refused to examine my issues, telling me to go to a dermatologist instead. It was obvious to everyone that the dermatology issues were a reaction to treatment. The dermatologist said that these were untreatable issues and they were dangerous, but the only way to stop them was to quit treatment. She had a palpable expression of relief when I said I would. But through my whole treatment, my issues were addressed by a shrug of the shoulders by my GE, most times over the phone.
I also should state the obvious fact that these guys were possibly the worst doctors on the planet. I'm positive that most physicians are better. But, it happens.
My intolerance to treatment was the result of autoimmune-possibly allergic problems brought on by treatment. I still get them occasionally - my knuckles swell and split and sometimes still get a rash. But since the symptoms occurred so radically with just INF/riba, re-treating would almost certainly produce the same results, just faster and probably more radically. So that option is off the table for me.
The question about treating or not to treat is the one that concerns many people on this board, and it is the concern that many responsible people on this board question about my posts and my motives. I have heard from some people on this board privately, who I respect a great deal, who are concerned that putting out this kind of information, while it may be useful to people in my situation, may dissuade people who should treat not to treat.
I understand that, and that is the basis for your concern. I also understand that reasonable people with the best intentions are worried about this. I also understand that these concerns are exacerbated by the arguments that LDN is effective. The chance that LDN is effective magnifies those concerns. It would be much easier if LDN was demonstrable ineffective rather than possibly effective. It would be better if it were like milk thistle that helps a little bit, and not a lot.
So let me tell you my thoughts on this. I never say not to treat. That would be totally irresponsible. I also never say to treat. I believe that is also irresponsible. That is a very difficult personal decision that should be made between a doctor and the patient. The negative consequences of treating and failing are part of the equation, and they must be weighed against the positive chances of being cured. Both sides must be weighed in the decision. There is a fifty-fifty chance that it goes either way.
I just could never in good conscience push someone one way or another. I don't have an opinion on a very important question like that. Consider that if that person fails treatment, and suffers for that decision. What if the failed treatment really gave him a big push in the wrong direction and made his condition worse? I would not want that responsibility. I also would not want the responsibility of telling someone not to treat, and have him miss out on a chance for a cure. INF is the only shot at that.
That's why doctors get paid the big bucks. Let them have the responsibility. And frankly, what good would it be to add my voice to the huge number of people here who give advice to treat to everyone who comes on the board? I never participate in those threads for a reason. I support everyone's choice. But I think they have to make it on their own.
If they don't treat though, or they can't, or if they are in between efforts, then why not give them advice on how to help themselves? And should I suppress the information to people who really need it and really could use it, so that people don't get influenced in their decision? I think not. I think it is just more information, and the two strategies are not mutually exclusive. They just can't be used concurrently.
Mike H
Marcia, You are correct but Denise was telling Mike he should give TX another shot. I believe he is a geno 1. (applicable in his case)
It looks as if somehow her post is now gone. It preceded my last post.
Denise, I wrote you in an earlier post that I had a biopsy in 2008; 1/6 ishak. It's in this very thread.
Willy
'The vast majority of people who have HCV are waiting for something better. PI's should be here in about 18 months. I hardly think it's controversial to wait to TX. * "
No I really don't think that is true - most people when they find out they have the disease in later stages just listen to their doctor and do what they are told to do to save their lives or what is left of their livers. Most people aren't like us, obsessed and educated in their own disease. Most people still just trust their doctors like they are God and it wouldn't occur to them to think otherwise or to judge what they say.
and all I gotta say is wow.
Could people please stay on topic? "
Must be fun living in your house.
While it is hoped that PIs will be available in 18 months, there is no guarantee that they will be approved then or ever. There have been drugs which have been in the final stages of the approval process but were abandoned at the eleventh hour for some reason or other.
Furthermore, the topic is antifibrotics and supplements, so your PI post is no more "on topic" than anybody else's.
willy, are you talking to me? If so everything I wrote has to do with this topic. When you treat or start a supp regimine maybe you can add something.
The powers that be don't exactly know the long term effects if inf & riba (and they have been around for quite a whiloe) and you are advocating adding another TX with less known long lasting sides with less long term data. I personally don't want to be a guinea pig, now if I was a 2 or 4 time relapser I would take the jump.
Do you know your liver status via biopsy to know that you shoulod even wait?
Have a great day
Denise
'The vast majority of people who have HCV are waiting for something better. PI's should be here in about 18 months. I hardly think it's controversial to wait to TX. *
That all depends what genotype you are. So far the PI's don't work on geno 3's, so I don't think we should generalize.
Could people please stay on topic?
Further.....
I can think of a few respected members on this board who treated, SVR'ed and wish that they had waited to treat later.
Many doctors..... some world renowned hepatologists....are suggesting to their patients that they are fine with waiting until the new PI's come out.
The vast majority of people who have HCV are waiting for something better. PI's should be here in about 18 months. I hardly think it's controversial to wait to TX.
Willy
I agree and admit that I should temper my remarks and hold my fire, and I intend to do so in the future.
But to return to the topic, the gist of the issue is reversing fibrosis. For many who have achieved SVR, it has been shown that if the damage has not progressed too far, the body has its own mechanism to do that job. But for those who are still infected, the question remains - can you slow the progression of fibrosis in the presence of the virus? Can you stop the progression? And can you actually reverse fibrosis in the presence of the virus? Those are three distinct and separate questions.
Can the body's natural fibrinolytic process be aided or stimulated even while infected?
The answer may lie in the fibrinolytic supplements listed above. Or not. But if you are looking for strategies, it never hurts to narrow the search.
Mike H