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pharma vs holistic hep c treatment

Along comes this HVC after hitching a ride for about 25/30 years. Read lots on the net about past and present pharma and natural herbal therapys,side effects and degrees of success on both sides. Without being derogatory, I'll call'em the Suits and the Hippies.
The Suits have some very convincing momentum in the battle against HVC for us but at a cost, both financial and side effect prone with varying success. The Hippies seem to be gaining (by my observation from the failure of the Suits) some momentum with less costs, little to no side effects with claims of degrees of success. Both are advancing in their knowledge and help so I must add I praise them all for effort.
Non are going to disappear tomorrow, nor am I but here's my question finally. Has anyone given any particular, less invasive and side effect prone Hippy strategy to return to (full health HVC wise) or is this more often used as a last resort (as I seem to gleen) after the Suits have had their chance but left you less than satified with their end result.
(If they would only get their collective knowledgeable heads together for all our benefits.)

Theewoodman  
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I have been holding and holding my tongue because in these discussions with you, I get absolutely nowhere.  As my husband is a "not very intelligent" 3 x nonresponder that gave his all to clear with SOC and stupidly resorted to HR's tremendously effective protocol for improving liver function...
I read your posts. I felt tremendous  stress and suddenly remembered an article that popped up on yahoo this morning which talked about some home remedies that many have found effective.  One of them was for stress induced tension headaches.  It said to lay a pencil horizontally in your mouth and hold it lightly with your teeth without clenching and it would relieve the clenched jaw thereby alleviating the headache.  The pencil is in my mouth as we speak and I actually do feel some relief although my source of stress remains.
Ev
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My profile only shows how long I have been a member.  I have been reading this board since 2006, and to me that is a long time.  I read your posts carefully and all the others too.  I didn't misread anything.  I did not say you are against SOC.  What I said was pretty clear, but maybe you missed something or didn't get it.  What I am saying is that the people who post here should be ready for some to contradict and disagree with them.  It is not a private club, its an internet forum.  You have to expect that somebody might post things you don't agree with.  To me its no worse them disagreeing with you than you disagreeing with them.

I wish everybody luck with treatment or to manage their disease somehow.  Everybody, including you and me.
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979080 tn?1323437239
Once you really get rolling fighting this disease you will find that there is no such thing
as "pharma vs holistic hep c treatment" because we all have principally the same goal.

A forum member here once told me she would eat horse sh*t if it would help getting
rid of the disease. It kind of stuck me.
Not to say that I advocate manure as the next cure......

b
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179856 tn?1333550962
Evangeline,

Good luck to you and joe and hep tech and all of that.  I am entitled to believe as an 'intelligent' person that there is only one CURE for SOC currently however there will be new meds in coming shortly that will work even better.  I would advocate someone take them rather than high doses of vitamin C and hope for a good outcome taking Lloyd Wright fake supplements.

I would hold out for the 75/80% chance of being cured rather than a zero %-to me that seems pretty obvious at this point.
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Nobody said it would cure!  HR sure didn't imply such a thing. You can't lump HR's supplements in with Lloyd Wright and the BHT man.  HR's name shouldn't even be in the same sentence. HR is a highly specialized Dr. in this field.  Lloyd and Oscar are not.  I don't mind hearing what they have to say but I chose the recommendations of the super-brain liver specialist. It certainly doesn't seem like an illogical choice to me.  If you can 't have the cure, go for the next best thing.
  If you were a paraplegic and a Dr. said he could not totally fix your legs, but he could give you something that could allow you to hobble around enough to  live a better life, wouldn't you want to take it?  .
By the way, my name doesn't have an " E." at the end.  Someone else uses the same name but with the added "E".  An old post popped up from the other person with a similar name , and I don't want to be mistaken as the same. Not a big deal  but I just wanted to clear that up.
Wish we could see eye to eye on this.  Your stance puts people like Joe out in the cold.  It isn't like Joe is a tiny minority...there are a lot of people like him.  If we have to
wait for 100% proof, it won't matter for  us anymore.  
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1130586 tn?1316269892

Good question ... When do you stop getting PCR's ?

As far as insurance paying  , Tx etc ... I and others have no experience as we pay out of pocket for Tx & testing ...

Would you stop because your insurance would not cover the test ? Personal choice ...

1- 15 yr. associate of mine (prior G-1) still does annual tests 13yrs. after his second try was successful in 1998 ... another close associate of 20yrs. prior G-2 still does annual tests 6 yrs. after clearing .... both pay out of pocket .... you figure it out...

The following copied from this report you provided ...

The other one with 90 patients is too few patients for a determination IMO ....

http://hepatitiscresearchandnewsupdates.blogspot.com/2011/01/impact-of-sustained-virological.html

Recently, Welker and Zeuzem (2) reviewed available data on the rates of late virological relapse in hepatitis C patients treated with IFN (or PEG-IFN) therapy with a sustained response based on the 24 week off-therapy rule. The authors identified 44 studies, including more than 4200 patients who had been followed up to 108 months after the end of therapy. Overall, late virological relapses were rare (3%).

A 3% late virological relapse rate .....  I wrote .... 3-5% .... it depends on what studies you read ...

The point being ... there is a chance of late virology relapse ... does anyone like this ... of course not ... it is however a reality of this unpredictable viral infection  .... also , if you take the time to look ... you will find that 100% of HCV specialists do not agree on using the term cure for SVR ... when 100% do agree ... then i will too ....

Best of health to you

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1130586 tn?1316269892
"I don't see any SOC supporters bashing anybody"

Take time and search the archives with an open mind and you will find this happens almost every time the word "alternative" is mentioned here ...

This is your statements to me ... inferring I don't support SOC Tx...

"If you don't want to do SOC or you can't do SOC, fine, but why does it offend you when people point out that SOC is the only clinically proven cure?"


What offends me are a 1 size fits all response to a sub-group of SOC Tx intolerant folks asking for help who do not receive support ...


NYgirl answers to Evangelin .... who's husband is 3 times SOC intolerant  ...

Good luck to you and joe and hep tech and all of that.  I am entitled to believe as an 'intelligent' person that there is only one CURE for SOC currently however there will be new meds in coming shortly that will work even better.  I would advocate someone take them rather than high doses of vitamin C and hope for a good outcome taking Lloyd Wright fake supplements.

Evangelin never mentions L. Wright or Vit C ... Yet NYgirls response mentions that ... is this kind of response really necessary ? Is it a Help to her 3 times SOC intolerant husband ??

There is a large subgroup of HCV infected folks...  asking for Help,  who CANNOT , for whatever reason , take the SOC Tx ...

Don't those posters here understand the words .... Cannot take it ... It does not work , The Sx are intolerable ......  what can I do now ?

Instead of these posters .....  just saying nothing ..... and ...... not involving themselves in the discussion , very easy to do , just don't get involved in the post ....

They say the same thing over and over .... SOC is the cure , or the new miracle drugs will work .....

Most of the null responders , relapsers and Sx intolerant ,

Know SOC is the only Tx that may kill the virus first hand ..... as they have tried ....

So, the continuously repeated same SOC answer is the only way ... response to their quest for help ....  is not any Help and non productive to those who simply cannot do ...  or tolerate this Tx , or afford it and are looking for ways to help the liver  ....  

There are many herbs that do seem to help , not Cure , but Help the liver ,  .... this site is called MedHelp , not MedCure ....

Where is the compassion and understanding for their SOC intolerant unique situations ?

Thats what offends me ... since you asked ....  
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1586675 tn?1300908695
"Unfortunately today the only treatment that  IS clinically proven to eradicate HCV  is the combination tx.of  Inf/Riba. "

hi willbb, how do you arrive to this conclusion? to make sure i understand, are you only referring to our western system or are you including all medical systems? when u say "eradicate" do you mean that the viral load went down to 0 and virus was undetectable or? not trying to be in any sense sarcastic by the way... reason i am asking is because i was under the impression that there are actually official records  on cases of patients with hep c who were able to get their viral loads down to zero (undetectable). these patients were treated with chinese medicine only.
 i will also try to get copies from a friend and chinese acupuncturist and scan the docs for anyone interested. in the meantime, some of these docs might be available to the public on specific medical sites.
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1586675 tn?1300908695
soory for the late reply. clarification coming up: sorry yes it was confusing. i got some terminology mixed up it looks like. got to say that i am still trying to figure out where my hep B and hep C stand in all the jargon of my lab results... another world.... anyway
with her homeopathy: and this is what she told me after i called her:
viral load decreased. right, she still has hep c though
last CT and fibrosure shows that her fibrosis has regressed. still present but less severe

and most importantly to her before her therapy, the symptoms were so severe, she was physically and mentally impotent. had to stop her work unable to function.  since then, she reports feeling with energy, no symptoms and able to get her life back. in france (where i am from), homeopathy has become a popular and respected method. i personally do not respond to it so i would not be able to go further than what my friend has shared about her experience. as background, she is 60 now, contracted the virus around her 20's via IV drugs. partied a few more years but got cleaned before she turned 30. the symptoms started to show mid 40's. now re lupus all i know is that it is the reason why she cannot do interferon. 

PS i realize that i omitted to ask her about length of tx. i would assume over a long period but need to confirm with her. to be continued
:)
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1586675 tn?1300908695
"There is nothing CLINICALLY proven to cure Hep C other than the known drug therapy we have today.  That is a fact."

hi again trish77, i guess i have the same question i had with willbb, how do you support this statement above? which academic, medical or scientific organization claims that fact? again, not trying to be confrontational... i am honestly surprised that many posts are so categorical about the existence of only one tx that can "eradicate" hep c. as i explain to willbb, i was told that records cite patients viral load down to 0 after treatment using chinese medicine only.
i will make it my mission to find some docs on the subject.
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92903 tn?1309908311
I think it's pretty likely that inf/riba treatments are the only thing that's going to get the job done with any predictability right now - I mean no one has proven that shoving a live herring up your arse won't work - but my money's on a good time without any viral clearance on that one.

I also think it's pretty likely that you can slow fibrosis progression with lifestyle choices and supplements (f'r'example milk thistle is pretty widely accepted as effective, and PPC has a damn good chance of delivering benefit). Genetics come into play of course.

We've had a couple people here who, whether due to the supplements they take or blind luck, have virtually no fibrosis at all,  after many, many years.

Inf treatment ain't for everyone. But it sure is a nice option to have on the table. This need not be such a dividing issue, me thinks.
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Nice summation.  Agree with your conclusion.  Ditto on the herring...just so many fish in the sea though. :)
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I don't understand.  Why should people not get involved in the discussion?  They say what they think, you say what you think and so on and so on.  I don't see the problem with that.
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Some avid proponents maintain that it is unnecessary to study unconventional therapies; that their longevity and popularity provide adequate "proof" of validity.

I know this is out of context, taken from a paragraph of one of Trish77 posts but this is very much the thrust of my original question. I'd like to read anything (docs) you may find.
I'd imagine those 1000 year old cultures would'nt consider western medicine as traditional as we like to call it. The Hep c virus doesn't make the cultural distinction either way. For me it's all about trying to educate and then descide.

Thanks to all for your continued efforts.

James (theewoodman)
  

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  I said this earlier in this thread:

"Unfortunately today the only treatment that  IS clinically proven to eradicate HCV  is the combination tx.of  Inf/Riba. "  

And you have asked me this:

  "hi willbb, how do you arrive to this conclusion? "

   Not being in the medical field I personally have conducted no studies to arrive at this,however like most of us here I  read and do as much research as possible to try and stay up to date and so far  I found no data that I trust to belive otherwise.


  If you have proof of another cure that I have not found I would appreciate your citing the studies,trial #"s etc for my perusal, as I am always interested in what others have found.

I stated that it was "unfortunate "that this is the only known treatment,as I am one of the approx.50-55% of folks with Geno 1 that this treatment  "so far" did not work for ,and I currently take a number of  natural products(like I have for many decades) to try and stay as healthy as possible until something else comes along that  I trust will work for me to eradicate the virus   ...or to a least to a sensitivity of UND

   All the best

WILL.



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1586675 tn?1300908695
hi will, thanks for the feedback. the studies that i refer to are on patients using traditional chinese medicine. According to two different acupuncturists/chinese medicine specialists that I met, there are cases (documented) where within a group of patients with Hep C, several were able to get their load down to zero by end of treatment. will definitely keep you and everybody else updated by posting anything i find here. BTW, I am same genotype as you and understand the challenge. haven't gone through treatment yet... not sure what i am going to do yet... not against Inf/Riba but not convinced either. I am doing the biopsy today. so, first thing first... :)
Take good care of yourself,
Nikita
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1491755 tn?1333204962
Hi,

You said there are documented cases of people using Chinese medicine, and their viral load was lowered to zero.

What viral load test measures to zero ?
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148588 tn?1465782409
". According to two different acupuncturists/chinese medicine specialists that I met..."
This is what is known as 'anecdotal evidence'.
No reputable chinese medical practitioner I've met has ever claimed a cure or a 'zero' viral load. On the contrary, any such claims would make me suspicious that they were even competent to practice. And I've used TCM before, during and after tx.
Let us know when you get that documentation.
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1491755 tn?1333204962
Here's an example of backing up your statements with clinical studies;

Hep C is rarely if ever transmitted sexually.  Please see the study below.

http://www.hepatitis-central.com/hcv/hepatitis/notransmission.html

Documented cases of Chinese medicine lowering VL to zero (when there is NO test available that measures to zero) are sad at best. I want to see a clinical study that proves this.  
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Nikita:

Good luck on your biopsy today...Lets hope that your degree of liver damage is not as yet to the degree that you have to worry about the Tx. regime you choose.

  I would also like to add to my last post to you that I have undergone acupuncture tx. many ,many times in the past for sprains.strains etc.from athletic injuries ,and in all the viral load tests I have had over the years,not once did my numbers come down,as a result of these treatments.

Who knows,maybe they were sticking those needles in all the wrong spots  :)

WILL
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1491755 tn?1333204962
Here's another study to back up the first one.

http://www.nature.com/ajg/journal/v99/n5/full/ajg2004164a.html
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freenikita, perhaps some of the information in this article is what you have encountered.

http://www.itmonline.org/arts/hepcstrat.htm

If you can get all the way through this article - long but lots of information and a good read - I found that it's written in a very balanced way and definitely food for thought.  There are a number of studies cited here with their results and finally concluding in the hope that further clinical trials will eventually be conducted to provide the necessary proof to establish an accurate level of efficacy.  The article is older (1998) however I found it balanced, comprehensive, interesting and cites a number of references.  

Examples of statements:

"MONITORING TREATMENT OUTCOMES
The concept of cure in a case of an infectious disease, like hepatitis C, includes the complete elimination of the virus from the body, not just limitation of its action (remission). For this concept to be applied, one requires the modern knowledge of, and testing for, viral particles, something that has become common place only during the past few years. The PCR (polymerase chain reaction) test for hepatitis C viral RNA is, therefore, the current standard for measuring the status of the disease, and the determination method of a true cure. The test measures the "viral load," or the quantity of virus in the bloodstream. In someone who is cured, the viral load should be undetectable (technically, one cannot measure tiny amounts of virus, so one can only say below the limit of detection) and then continue to remain undetectable in the absence of any virus suppressing therapies for several years. At this time, it is not known whether hepatitis C can be cured according to this strict standard, partly because there hasn't been enough time (since testing was developed) to determine whether any treatment has a long-term successful result."

"CHINESE MEDICAL ANALYSIS OF HEPATITIS C
Physicians in China were alerted to hepatitis C mainly through the international medical literature. Due to the lesser availability of funds for testing compared to the situation for American and European doctors, Chinese physicians primarily investigate hepatitis C and its treatment in patients who are notably symptomatic for the disease and are seeking relief of symptoms. By contrast, many tens of thousands of Americans with asymptomatic disease may seek treatment simply because the virus showed up after routine examination indicated mildly elevated liver enzymes. Because Chinese doctors mainly deal with symptomatic patients and because testing of these patients is also limited, the analysis of symptoms and the alleviation of symptoms are a primary concern. For traditional doctors, the fact that the virus now involved is "C" rather than "B" has little significance in relation to treatment. Rather, the important factors are the symptom manifestation and the fact, known from modern science, that a virus is involved."

"REPORTS OF EFFECTIVE THERAPY FOR HEPATITIS C
The medical reporting of treatments for hepatitis C in China has a number of flaws. Sometimes, the therapies (the herbal formulas) are not specified or only partially specified. Other times, the outcomes of treatment are unclear. Therefore, one should interpret the reports with some care."

"Oxymatrine was selected for study because it had previously been shown to inhibit viruses (including hepatitis B), enhance cellular immune functions, and reduce liver fibrosis. Sophora subprostrata has been an ingredient in many hepatitis B formulas (given orally in decoction form). Sophora-root-extract injection has been used experimentally and clinically for a variety of disorders at least since 1976. Usual dosages are 200-400 mg per day, though up to 800 mg is given by injection in two divided doses. The tablet of sophora extract has also been administered; an example of the dosage used is 1.5 grams each time (presumably about 20% alkaloids, thus 450 mg), three times daily.

Oxymatrine injections are not an option for treatment outside China, as this would require medical application of an unapproved drug. However, oxymatrine is available for oral administration. The Institute for Traditional Medicine has begun clinical use of oral oxymatrine in tablet form (sophora root extract, 20% oxymatrine, 2% matrine, 1 gram per tablet; three tablets per day for 600 mg oral oxymatrine) as an herbal supplement, not a drug therapy."

"SUMMARY OF CHINESE WORK
It has been said that Chinese medical journals only publish positive results. In the case of hepatitis C treatments, that appears to be the case thus far. However, it is clear that the positive results claimed are within the realm of possibility: viral inhibition measured by PCR tests shows results that are comparable to Western medical treatment, and tests showing antibody conversion or liver enzyme normalization are consistent with reports for hepatitis B that have been emerging from the Orient (mainland China, Taiwan, Hong Kong, and Japan) for several years."

"Until more clinical work with hepatitis C and Chinese herbs is carried out in the United States, it may be difficult to convince medical practitioners and patients to try this method. Because the herbs are non-toxic, some patients may wish to utilize this therapy in place of, or in addition to, treatment by interferon. It is reasonable to begin collecting information from such patients to provide case histories in an effort to eventually develop a well-designed clinical trial."

Trish


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To:all

  This is a much more recent article....



Oxymatrine is a substance found in sophora roots. In a comparison of oxymatrine versus vitamins in one study, nearly half of 43 patients had reduced their viral load to non-detectable levels, compared to only one patient taking vitamins, researchers at the University of Shanghai in China reported.17

However, while liver enzyme levels were higher in the treatment group after two months of treatment, they were generally the same between both groups after 3 months, the researchers reported.

In the end, Coon and Frist "identified several promising complementary therapies", but definitive conclusions couldn't be drawn because of questionable designs of the studies they had researched.

"More research is warranted to establish the role of these and other therapies in the treatment of hepatitis C," they wrote.


  
  
  



  

    View Older Articles   Back to Top   www.natap.org  

  



  
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1130586 tn?1316269892

Of course everyone should take part in a discussion ... if they have something worthwhile supportive & focused on the subject to share ... a matter of interpretation of what is worthwhile or focused ....

The reality is this ... for G-1-4 ... apx. 50% on SOC Tx achieve SVR ... What about the other 50% ?? ... there is added hope with the new drugs , however , as far as the clinical trials show .... for G2-3 the new meds will not help ....

Those drugs will still leave apx. 40% of G1 Tx experienced patients unable to achieve SVR , and carry a big risk for those folks ... after Tx of carrying a mutated virus ...

They are not a Magic Pill ... as some here contend .. I do wish they were ....

When the posts of some are Always Negative and many times Insulting to those who have tried SOC and Cannot clear the virus .... or to those choosing to wait for further developments in Tx options .... looking for liver support information .....

It disturbs my sense of humanity & compassion ..

By the way , I was surprised to receive 3 very nice PM's in the last few days from folks who are in that very unfortunate position ... Thanking me for trying to help support their unique position ....

And I know as a fact that there are many more MH members who are put off by these Always Negative , Ill worded, non supportive members .....

Not 1 or 2 members here , but many complain using PM's ....

You would not know that ....... I will not share those as it would not be respectful to those who wrote them or to this site  ... believe it or don't ... up to you ..

I hope this helps you to understand why I think posters that are , non supportive, not focused on the subject , and ,many who's data bases even on the subject of SOC Tx are out dated ...

Only bring more stress and add aggression on the very worthwhile quest for information from the unfortunate 50% G1&4 , 20-30 % G2&3 HCV infected who do not respond to SOC .. or someone who just wants to wait for future Tx options and is trying to find a way to Help support their liver until that time .............

Those folks , in my opinion , should keep their destructive , out dated and very opinionated closed minded comments to themselves ..... unfortunately i think that would be as hard for them as clearing HCV ..

Let the other members here who do care, try to Help those who need it .....

Since you asked .....



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I don't see where anybody referred to treatment as a magic pill.  I question some of the statistics you quote.  But I would never try to keep you out of the discussion.  I think you should go ahead and state your opinions, even if I think your posts are not helpful, even when I think you are wrong.  Even if I think a person is destructive, opinionated or closed minded, I think there is room here for everyones views.  I'm not threatened by someone disagreeing with me.  Who is to say who cares and who doesn't care.  Even if I don't find all the discussion helpful I bet there is someone out there who does.

Everyone should take part in the discussion.  Who is to say what is worthwhile?  Its so subjective.
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92903 tn?1309908311
Head first/Tail first?
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1574015 tn?1317664820
AND To all active members here, and those  %50 of people where SOC is not working.  To change the subject slightly.  There is HOPE!    INF/RBV combined with Clinical trial drug BMS790053 killed my virus in a 24/48 week trial . The trial was for genotype 1 and 4, in 5 different countries. I have / had  G1a.  A trial is starting soon for G 2 and 3.    I was the 8th person to complete the 24 weeks and 7 people had VL <25 at week 4 and were Und at week 10, and continued that way till week 24. We are finished!   One person had a higher LV at week 4, but responding, so they have to do the full 48 weeks. That is the best results of any new drug I know about. This is just a heads up. The clinical data will come in time.     I looked into alternate / hippy care.    I despise some aspects of big PHARMA but decided to go that route anyway.  Four days with no DOPE now. YAHOO!  In the meantime ..Look after your precious liver!   Take Care ,Pedro
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1491755 tn?1333204962
Telaprevir works form G-2, but unfortunately G-3's are SOL.

http://www.natap.org/2009/EASL/EASL_13.htm
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I have had several send me personal messages to let me know that they also are using the Hep Tech supplements and are having really good results , even more impressive than Joe's. This is likely because their livers were less damaged to start and therefore easier to heal.  I wish they would share it publicly but the word I get is that they don't wish to be attacked.  Well, if you don't think we feel like we have been persecuted on Medhelp...you would be wrong. The only reason I have ever entered in to the strife, was in hopes that someone needing help as bad as Joe did, would benefit.
I took some time off from trying though as it was really beginning to disturb my peace.  Believe me, if there was anyway we could get Joe to SVR with a standard TX, we would.  He took everything approved and complied to the letter despite having very debilitating SX.  We went through it 3 times.  Trials have not been an option because practically none of them will take cirrhotics and his platelets and hgb have always stayed too low to get in a trial anyway.  Every SOC road was blocked so there was no choice but to take a detour.  It has returned Joe to a life worth living.  Why should others in this predicament be kept from knowing this?  
I know that Hep Tech is expensive but keep in mind that they have a compassionate relief program which lowers the cost for those with a low income and that is how we are able to keep Joe on it.  If I ever am unable to get the Hep Tech, I will just go back to buying HR's individual supplement suggestions from other discounted sources like Swanson Vitamins, I herb etc. but for now I am glad to be getting the quality and potency of the Hep Tech supps. and I have much less to do to try to figure it all out.  Joe has to swallow fewer pills , which he appreciates.
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1491755 tn?1333204962
No one is saying you shouldn't do what's best for your liver and your life.  If herbs or a diet change help take stress of your liver that is what we all want.  My liver is stage 3 HELLO !  Why wouldn't I want to cure it ?  Ya think I lived through 24 weeks of H$LL for fun ?

What people like me are saying is there is no documented case of SVR or a clinical study that proves SVR is attainable via "hippie" meds.

If you think 50% success is bad try 0%.

Of course we hope and pray for a better day, a positive attitude was crucial to me while on TX, but it didn't lead to UND.  Those nasty shots and pills did.


If you've got a clinical study you'd like to share that proves alternative meds erradicate HCV please share them.  
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I wouldn't go so far as to say the new meds will not work for G3 and I wouldn't be going around saying that G3's are " SOL".  The study you cite only covers the first 15 days of treatment and doesn't demonstrate SVR rates.  

Certainly this part of the data you've cited is not promising:

"In this study genotype 2 treatment naive patients achieved a mean 4 log reduction in viral load after 6 days on monotherapy with telaprevir. The triple combination of telaprevir + peg/RBV achieved a mean 5.3 log reduction in viral load at day 16. But genootype 3 patients only achieved a -.80 reduction in viral load so therapy for genotype 3 won't be pursued."

However, one can still SVR without getting that lovely RVR.   Telaprevir is not entirely without merit for G3's:

http://www.hivandhepatitis.com/2010_conference/easl/docs/0514_2010_b.html

Results:

Among genotype 2 patients, HCV viral load decreased dramatically in the telaprevir monotherapy, triple therapy, and standard therapy arms:
G2 telaprevir alone: -3.27 log by day 3 and -3.66 log by day 15;
G2 telaprevir/pegylated interferon/ribavirin: -4.03 log and -5.51 log, respectively;
G2 pegylated interferon/ribavirin: -2.04 log and -4.83 log, respectively.
However, fewer people in the telaprevir monotherapy arm went on to achieve sustained virological response (SVR) by 24 weeks after completing treatment:
G2 telaprevir alone: SVR 56%;
G2 telaprevir/pegylated interferon/ribavirin: SVR 100%;
G2 pegylated interferon/ribavirin: SVR 89%.

Among genotype 3 patients, HCV viral load decreased much less in the telaprevir monotherapy arm:
G3 telaprevir alone: -0.54 log by day 3 and -0.54 log by day 15;
G3 telaprevir/pegylated interferon/ribavirin: -3.05 log and -4.85 log, respectively;
G3 pegylated interferon/ribavirin: -2.38 log and -4.72 log, respectively.

Looking at genotype 3 patients, SVR rates were lower overall and did not diverge so much across the treatment arms:

G3 telaprevir alone: SVR 50%;
G3 telaprevir/pegylated interferon/ribavirin: SVR 67%;
G3 pegylated interferon/ribavirin: SVR 44%.

If I were Geno 3 and I could increase my odds of success by 23%, I'd at least be considering Telaprevir in the mix if I needed to treat sooner than later.  Certainly resistance issues need to be considered however it seems that Telaprevir for G3's is not entirely without merit.  I wouldn't classify an increase in SVR rates by 23 % as being SOL.  Certainly more challenging than the other Genotypes so far...but not quite as bleak as SOL.

Otherwise, R7126 shows very promising results so far for G3:

http://www.hepcassoc.org/news/article173.html

"In a late-breaker presentation at the 59th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD 2008) last week in San Francisco, researchers reported the data on one such agent, Roche and Pharmasset's HCV polymerase inhibitor R7128, in prior non-responders with HCV genotypes 2 or 3. This represents one cohort in a larger study that also included genotype 1 patients."

"Results
• At week 4, 90% of patients receiving R7128 achieved RVR (HCV RNA  86%), similar to R7128 + [standard of care] in genotype 1 non-responders, with an acceptable side-effect profile."

"These high response rates in a difficult-to-treat patient population suggest that combination therapy featuring R7128 deserves further exploration in both treatment-naive and non-responsive genotype 2/3 patients with HCV," they concluded. "

G3's are far from the bleak picture of SOL that you're painting when it comes to Telaprevir and PI's in general.
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Part of my "Results" cut-and-paste disappeared...good results at 90% RVR and similar results for Geno 2 and 3!

"Results
• At week 4, 90% of patients receiving R7128 achieved RVR (HCV RNA < 15 IU/mL), compared with 60% of those receiving placebo.

• The mean decrease in HCV RNA was 5.0 log10 IU/mL in the R7128 arm compared with 3.7 log10 IU/mL in the placebo arm.

• Responses were similar for patients with genotype 2 and genotype 3.

• R7128 was well tolerated overall.

• No serious adverse events (AEs) were reported and there were no discontinuations due to AEs.

• AEs were similar in prevalence and severity to those previously reported with pegylated interferon + ribavirin alone.

• Laboratory safety assessments revealed no grade 3-4 changes in hematocrit, hemoglobin, absolute neutrophil count, or platelets, nor clinically significant changes in other laboratory parameters, vital signs, or ECGs
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1586675 tn?1300908695
HI James, if I understand your question correctly, I was referring to the HCV RNA, the Hepatitis C Quantitation which, I believe, is usually measured in IU per mL...
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Somehow my message just isn't getting through.  I want everyone that can SVR to do so.  I have never said that supplements will eradicate the virus.  They can make you feel better and improve your liver function.  This is not about those that can achieve SVR with SOC, it is about those that can't.  Is there something wrong with the way I am stating this?   I am not the sharpest knife in the drawer but I don't see why this is so hard to communicate.  For people like Joe, supplements are the only route.  If you are thinking that he can take Teleprevir and be cured, I sadly say, probably not.  People that have a poor response to interferon which has caused them to repeatedly fail TX, don't have a whole lot better chance with Teleprevir.  It is likely going to take at least 2 DAA in the cocktail to get the job done.  It isn't impossible that he could clear but his chances are nothing to get very excited about and that could be bad as far as being able to utilize that drug in a future cocktail.  I wish it wasn't so because it could be a long time before 2 DAA are available to Joe. Boceprevir is also basically eliminated for him because his hgb is too fragile.  You seem to think we have available soc  choices but we don't.  We are locked in this cell with many other non responders and people that have circumstances that prohibit them from being cured by SOC.  The supplements have given Joe,and thus our whole family, a quality of life he didn't have without them and supplied some hope.  
Best Wishes for your SVR,
Ev
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1130586 tn?1316269892

Read some of nygirl7 posts in MH from the past regarding Tela/Boce ... referring to them as the new "miracle" drugs ... there are many ...

No problem ... we agree to disagree ....  

The study or clinical trials current 2010 or 2011 reference data i refer to can all be supported... if you want ... just tell me which data you don't believe or trust ... or,  you can easily find this data online yourself in AASLD , EASL , CCO , ( Clinical Care Options ) or PubMed , NATAP websites ...

It does take the time to look though ..........



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408795 tn?1324939275
Great best answer up there Trish!  When I started tx in 11/08 I naively thought that I would breeze right thru it with no problems whatsoever.  Wrong!  I have many issues that I didn't even consider, also a friend of my wife's was going thru tx and doing fairly well so b/c of that my wife pushed me and thought it should be easy for me, irritating situation.  Long story short, I was gonna have to start Procrit along with my Boceprevir and SOC.  That wouldn't be a big deal for most ppl b/c most ppl have regular good running veins and unfortunately I am not the one.  I had a big issue with the interferon and it affected my mood drastically.  All of a sudden I was living with shame for my past drug use which came up as depression (anti-depressant didn't help) and was treated like sheet at work and I happen to work in the health field,WTF!!  I would like to tx again but that is only b/c I am dealing with the issue of swelling in my legs and ankles.  The swelling didn't seem that bad prior to me starting tx but I am now a couple of yrs older and I really don't know for certain if it got worse or not.  This time around when I tx I will have to prepare for it in a large way.  I got to lose some weight and get into working out regularly before I start.  Incidentally I forgot to mention that I am anemic and I had HepA when I was a teen so my liver wasn't anything close to normal before I was infected with HepC and dx'ed in 92.  

My suggestion to all who are looking into tx is this.  If you are in very good health and you have good veins.  Tx if you want to, but personally I would put it off for as long as possible.  That said keep on top of your HepC and that's for everyone who has it.  You never know when your LFT's are gonna spike ten fold and try to take you down so the best thing to do is have regular blood panels done and a liver biopsy done every 3 to 5 yrs.  The blood tests will have to be done more frequently, work that out with your doctor.

In short when it comes to SOC for HepC, put it off for as long as you can.  Tx if you absolutely have to but if you don't have to then don't stir the pot, jmho.  HepC is deadly serious and ppl are dying to get tx'ed so don't minimize the power of the dragon.  good luck fellow Heppers!  
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1491755 tn?1333204962
Great news Trish, Aaron please see Trish's post for g-3 telaprevir results
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1130586 tn?1316269892
Thanks to the powers that be ......  there is allot of new research , clinical trials and hopefully good news for everybody infected with HCV ... on the horizon James .. there is allot more $$ being spent on R&D these days than even 3 to 4 yrs. ago ....... in the next 5-10 yrs there may be a cure-all Tx for 100% of all the HCV infected .... or not ...

I did not mean to imply there is little hope for G-3 or any of the other genotypes .... who do not SVR ....

My main point and others in this thread has been to try to open up some of the close minded members here .....  to .... lighten up on the other members who cannot achieve SVR , or cannot handle the Sx of Tx , or just want to wait for new developments in Tx ... depending on their unique situation ...

Regarding Alternative ways to support the liver ....

Threads do go off subject sometimes as we all feel strongly about this infection and how do deal with it ...

Just to let you know ...  I want to dedicate your question "When do you stop having PCR RNA tests" to it's own post .....

I think this is a very worthwhile question ...



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1491755 tn?1333204962
I don't think it was my question.  But a worthy topic definitely.
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1130586 tn?1316269892
It wasn't your question .. your right .. it was mikesimon's March 10 question ...
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>"This is not about those that can achieve SVR with SOC, it is about those that can't. "

that says it all. As background, here's an excerpt from a recent review by Rehermann on host/virus coexistence:

"continuous recruitment and death, the lysis of some — but not all — HCV-infected hepatocytes, and the secretion of inflammatory and profibrotic cytokines such as TGF-β activate stellate cells, the primary source of extracellular matrix. The portal area expands, with thin collagen fiber extensions between layers of hepatocytes. As the disease progresses, fibrous bridges form between adjacent portal areas, and cirrhosis develops. Hepatocellular carcinoma usually arises after 2–4 decades, typically on the basis of underlying cirrhosis and possibly aided by an inherent carcinogenic potential of HCV "

http://www.ncbi.nlm.nih.gov/pubmed/19587449

Activated stellate cells, not the virus directly, are responsible for gradually transforming liver tissue to shoe leather. If you can get rid of the virus, great. If you can't it makes good sense to inbit TGF-B and stellate cell activation - that's the source of the damage. HR outlined relevant research in his posts here, principally antioxidants - but it's tough going. One thing that is certain is that there will be no pharma interest in this maintenance approach  - zero stock market speculation regarding PPC sales

The irony is that those who most need help on this forum receive the least. SOC tx is no picnic but is basically straightforward - follow directions, do your time and hopefully pick up your SVR at the end of the ride. Piecing together a survival strategy if you need to continue to coexist with the virus is much harder.  
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I wonder why pharma would not be interested in this? Cirrhosis can occur not only as a result of hepatitis C, but as a consequence of many other conditions. Couldn't they make some money off the maintenance approach? For many patients maintenance is the only option, unfortunately.
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1586675 tn?1300908695
Good Evening to all and Good Evening to you, Trish. Thank you so so much about all the info you posted. The documents I am referring to are actual case studies with patients whom hep c virus became undetectable after going through a traditional chinese treatment,  (honestly I haven't checked all of your sources yet so not sure if some links contain this but in any case that is what i was mentioning). I contacted my friends/chinese medicine specialists so they can let me know where to find such documents. Again, I will never claim "I know" and there is the possibility that I completely misunderstood and that if unable to get rid of the virus itself, chinese medicine in certain cases, can bring the viral load to zero. I made one of them repeat it twice at least. so, chances are I did understand correctly. All of you can count on me, as soon as i hear from them, I will communicate any and all information pertaining to the topic.

Have a great evening everybody,

nikita
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I believe pharma  is involved in development of various anti-fibrotic drugs. However, as evident from the long delay in PI approval, getting a new drug past the FDA is a HUGE task in terms of time, effort and cost. Over-the-counter agents/supplements that may slow fibrosis - eg by interfering with stellate cell activation or TGF-B signaling will never meet the threshold - they are not patentable hence profits are very limited and benefits are likely to be both mild and very hard to measure.

There's a good free-access review of options for  anti-fibrotic drugs and supplements out of Harvard here:
http://www.ncbi.nlm.nih.gov/pubmed/19726145
See for example the section on "Plant-derived Drugs"

Forums like this could be very useful for sharing reliable supplement vendors, supporting evidence and usage warnings. However most arguments over alternative approaches make no distinction between  colloidal silver and sho-saiko-to or ppc.
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Thank you very much for your response. Yes, you are right, arguments don't make this distinction. And this is sad, because there is a big difference between these approaches.
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1523804 tn?1316564509

"SOC is the only clinically proven cure.'

That may be true, but it is misleading.

It implies that only SOC actually works, and many people believe that.

If Chinese medicine, accupuncture, Ayurveda, homeopathy, cow urine therapy, pranayama, even BHT are never clinically TESTED, then they will never be clinically proven, but they are not clinically disproven either, so they cannot be ruled out.

Who does the clinical testing je me demande?

More accurate, and equally true, would be to say that 'SOC has been clinically proven to work some of the time. Other claims of cures have not been fully evaluated by western medicine/science as of today.'


Some possible cures definitely sound 'fishy' but others are founded on very sound concepts that are little researched in western medicine.

Point being, 'only clinically proven cure' is not the same as 'only cure', until all feasible, possible cures have been clinically tested.

SOC may be the only practical approach for the majority of people in the western world today, but progress is often the result of trying something different, often by force of circumstances and often in the face of skepticism.

If SOC has worked or is working for you that's wonderful, and if it didn’t or doesn't and supplements help, that's wonderful too, and if neither of those are possible and you're a neurotic, cirrhotic, pig-headed looney case, and you’re still trying to fix things, then it may all hang on how much support and encouragement your friends give you, even if they do think you're skreewd medically. All we want is the truth, and 9 times out of 10 with Hep C, the truth is "we don't know."
Points of view and opinions are partly what this site exists for, but t’would be nice if they  be served with a little honey so they be tasty for everyone.
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I was not talking about the cure, but about anti-fibrotic compounds and about supporting the liver function. HCV is hard to eradicate, and I personally have never seen anybody succeed doing it with alternatives. No solid evidence. But I did meet some people who are able to successfully maintain their liver health for many years despite the virus being present.

There is a big difference between the cure and supporting liver function.
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1523804 tn?1316564509
I realize the point of your comments, and mine was not addressed to you, but since this thread deals with alternatives to SOC, I was just observing that this understanding that SOC is the only cure and if you can't do that, then have a go at making do with supplements, is actually based on speculation and not based on laboratory tests, because not all the claims of cures have been thoroughly investigated.

Since you brought it up, I don't feel there IS "a big difference between the cure and supporting liver function."

Anti-fibrotic compounds and supporting the liver function, may be as good or better in restoring and maintaining good health as interferon is, it's not really had a fair testing.

There are many potential threats to our good health in our body all the time, if they are kept under control they are not a danger.
If the liver and immune system can be kept strong and  working well, we are not at risk from the effects of HCV. It is not so smart it will give up attacking the liver and go for the lungs instead.
Considering what a brilliant machine this body is, I feel it is capable of far more than we allow,  Hopefully others can shed  more light on this, and that with discussion and experience we can maximize the body's own potential to heal. Understandably is not of interest to everyone, each to his own, but let's at least have a look and talk about it.
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1433307 tn?1300343242
Hi,

I've been watching this thread & others on similar topics for a while now.
I also belong to another hepatitis c forum, a peripheral neuropathy forum & one for cryoglobulinemia. The members of these forums share their experiences with traditional & complimentary therapies. Many are using both. The atmosphere is very supportive. I like to come here for the latest information on what's happening in the US & to see what people who have taken the traditional route have to say & I'd like to see how those who have taken the  complimentary route have improved their quality of life. I get that "soc" is the only proven hcv cure & that some people are only out there to make a buck out of peddling snake oil but I also think there is some value in using other therapies to improve & enhance ones health. Massage, Meditation & Chiropractic therapies are all well accepted alternative treatments in our society today. So too is Mind/Body medicine, who'd of thought 40 years ago that it would be practiced  in a major medical hospital such as the Benson Henry Institute at Massachusetts General. I bet there were a lot of people who thought Herbert Benson MD was a bit of a crack pot back in the day but his theories have since been proven. Anyway my aim is to treat this disease with "soc"  whether that is soon or some time in the future when newer drugs become available in Australia & I may choose to use some complimentary therapies to prepare myself for treatment. Until then I'm interested in seeing what others have to say on the forum. will consider that it's not always what you say but the way you say it when trying to get your point across.

Best wishes to you all.

Have a great day :)
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I've arrived at the same conclusion so far as Aussielee and many others here. TX, yes but in the mean time, what can I do about my liver and cirrosis while I'm waiting.

murariji;
Anti-fibrotic compounds and supporting the liver function, may be as good or better in restoring and maintaining good health as interferon is, it's not really had a fair testing.

Remember this story:

Thomas Edison failed more than 1,000 times when
trying to create the light bulb".  (The story is often told as 5,000
or 10,000 times depending on the version.)  When asked about it,
Edison allegedly said, "I have not failed 1,000 times.  I have
successfully discovered 1,000 ways to NOT make a light bulb."

With technology, supportive forums like this and collective experiences and focus, I'm sure there are ways to tap the world for the discoveries we are looking for.

Thanks all, keep it coming.
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