Or do you just want to not believe any of them, no matter what the evidence says?
I am taking Dr. Zhang's MCM (Modern Chinese Medicine) formulas. My enzymes went from high (ALT 150) to normal (ALT 42) in three months. My VL is now under three thousand (2770), probably due to raising my LDN dose to 4.5mg. My previous high was 7 million. And my labs are completely normal for the first time in many years.
I realize that fibrosis is independent of VL and enzymes, but if you believe the first clinical I cited above, fibrosis staging can be drastically improved by MCM herbal formulas.
And, yes, it is true that hep c can only be cured by SOC. But that statement does not mean that one cannot live with hep c; that you cannot improve your condition.
I understand that it is the mission of many on this board to encourage people into SOC. But objectivity cannot be faked - either you are or you are not.
And yet we've seen others who's liver enzymes have tripled using the chinese formula's. Cure the disease for real and therefore your liver enzymes will be normal and you will have a ZERO viral load. Risking causing more liver damage via Chinese herbs is not something I'd like to do. You do realize the more liver enzymes you have means more cell death and less of your liver left to try to cure.
What do the links you provided have to do with the original poster's question? There don't seem to be any similarities in the formulas being advertised. As for FZHY, I'll wait a couple years to see if anyone can duplicate those results before passing judgement. Definitely not the most convincing thing I've read on PubMed.
The point is that clinical trials exist on lots of different herbal formulas that point to efficacy. I listed some above. If one chooses not to believe them, then what is the threshold of believability? If you don't believe the evidence, then either point to the flaws in the study that support your scepticism, or just simply say that you disagree with all clinical studies that do not support your prejudices.
The point is that the remedies that you are espousing do not have any hard clinical data to support thier efficacy and it is not particularly relevant that other herbal remedies have perhaps undergone legitimate scientific testing.
Your either/or scenario omits more than it includes - the flaw is your assumption that if one herbal remedy has been studied, that speaks to the merits or demerits of any other, unstudied remedy.
The point is that many herbal remedies "have undergone legitimate scientific testing". To say that none exist is obviously wrong. To point to an herbal remedy with clinical trials and say that it is not believable is either a rational decision based on evidence, ie.: a flaw in the study design, or an act of faith that your opinion is correct, notwithstanding the evidence.
I am not espousing any particular herbal remedy. I never said that because one herbal formal has valid science behind it, then all herbal formulas are valid. I support any formula with valid clinical studies behind it. Science is science. And science is objective, not subjective. Science seeks the truth.
I like the Zhang herbs because 1. they share many common ingredients with FZHY, 2. the individual ingredients have clinical studies behind them, and 3. they seem to work very well for me, based on my labs.
Why complicate things/....certain foods and herbs help the body and LIVE-R.....only big pharma drugs cam kill the virus,its as simple as ABC...i really dont see any debate here,am i missing something?......NOBODY EVER SAID FOODS AND HEBS CURE HEPATITIS..maybe a few misinformed poor souls do,but i firmly believe certain foos,herbs and supplemets do help the body heal,anyone who thinks otherwise is mistaken,just my thoughts
Well, I don't get you confused with anyone else, although you all seem to all be part of the same choir. You demand evidence, often saying that none exists (not a scintilla of evidence!), then when it is presented to you, you say you don't believe it.
All I'm saying is if you don't believe clinical trials, don't you need a reason to support your disbelief? Do you also not believe SOC clinical trials? Or do you only believe the clinical trials that support what you want to believe? FYI, that is not objectivity, that is pre-conceived prejudice.
I really don't know if my sustained response to IFN and the fact that my CBC and CMP labs stayed close to normal during tx were because of TCM or in spite of it. It was a chance I chose to take.
I don't know if what worked for me would work for anyone else, so I don't push it on anyone else. The same holds true for supplements, both OTC and Rx. The things I take, I take for very specific reasons that might not apply to someone else.
singing the same old tune. if you believe dr slangs herbs are doing you good then keep doing them. more power to you. knock yourself out! If you are trying to provoke an argument then you are in the wrong place. I truly wish you well and my prayers go out to you.
if you are relying on your LFT's for the condition of your liver then good luck. I remember reading someone on the chinese herbs thought they were doing great with lower lft's only to find out the herbs put them in liver failure. Something about "NON"-regulated herbs from china being tainted with pesticides. You are living dangerously proceed with caution........
PS, when you are done with dr slang you may want to check out llyod wright's protocol.
Apparently I am in the right place for an argument. You say you vaguely remember an anecdote about someone you don't know who, blah blah blah. Give me a clinical trial please. You bash anecdotal evidence but throw out the weakest one I've ever heard.
Try to back off on the emotion a skitch. I'm very interested but didn't see super compelling proof yet. I prefer to not download PDF after PDF.
I did check out LIV-52 site, but it appears that all of the trials were in India, or the majority in the beginning of the list. Many were for "infective hepatitis"; I'm not sure what that is yet. I didn't download and open the PDF.
I went to Clinical Trials .gov and typed in LIV-52 and got no results.
What this may mean is open to interpretation.
I think that we can agree that the number of units sold worldwide is not a good measurement of efficacy. It's so cheap that I was tempted to buy it to try it. OTOH.....if it was super effective I would think that it would be more expensive. Cynical, I know.
OTOH..... it's price would have to increase by about a factor of 100 to be able to afford to do a clinical trial in the USA.
The only person I know of that used it made claims it was great. As it so happened I later found out that they were a bit off a fibber about other things. Made me wonder.
Liver Support sells this product. I think of them as more well liked/trusted than Lloyd Wright. Some people would consider that to be a good recommendation of the product. Ralph may have some data on the product.
Then again, I find it sold at Amazon for about a third of the price, but with no sense of dosage. It is almost as though they are selling some dilute form which doesn't list amounts. I'm not sure that speaks well of the compound or company. Maybe it's the Walmart thrift store equivalent. I don't know but that doesn't inspire me with confidence.
Lacking great clinical trials I would want a lot of convincing testimonials, better yet from people that are "known" in forums. I don't think I've seen that, and I first heard of it in 2003 or 4. I'm interested, but not convinced.
I've looked back and read many of your posts Mike. I wish you could be that passionate about people on this forum and not just LDN or herbs. Gosh, so many unfortunate and sick people here with hepc who need support, a kind word, encouragement or just a hello, welcome to the forum. You know, a nice conversation, a few words here and there that things are ok and they're not alone. But no, it's always this same argument; no support and utimately we are all skeptics, unbelievers and misguided.
Yes, you can say Trinity you support people the way you see fit, and I'll do the same.
And that's fine Mike, but I can't understand why you just show up when there is controversy or you feel the need to convince people they can live with hepatitis c.
I think that says a lot about a person so you see I'm at a loss here because I'm not the that type of person. I can't turn my back on people and jump in every now and then when I think it's convenient or the controversy will further my cause.
well said trinity. i dont think mud is that type of person. real shame because he is very passionate about what he believes and if he would only put that energy into positive feelings and helping others he would be a great member here. oh well this I'm afraid this is all we will get from him.
Like I said before if we ignore people like this they will go away. after all it is obvious they are starving for attention.
I never try to discourage people from doing SOC; I also never try to encourage them to do it. Some people, like myself, cannot do SOC again. Those are the people I try to encourage. Do you ever speak to those people? Do you ever try to give them hope, or do you just try to push SOC like so many people here, without giving a thought that over half the people that try it fail? When someone says that SOC is the only cure, do they realize that they are telling a lot of people who cannot do SOC that they are doomed?
I usually keep my support private, in private messages. But my message to them is that they should not give up if they cannot or will not retreat; that there is hope and there are things that will help. And I hope to keep updating those posts for quite a few decades to come. The arguments start when I post those thoughts, because a lot of people here believe that that message is an effort to dissuade people from doing SOC. They don't care about the poor people who tried it and cannot try agin due to extreme side effects. Therefore I don't post very often. When posters are telling someone that they should do SOC and that everything will be okay, I disagree, because they don't know that everything will be okay. For roughly half of them it will be terribly not okay. So I stay out of those posts. But who cares about them?
I'm in that over half that failed Mike and I have over 2000 posts. There a a lot of posts that show I have given encouragement to all groups and so do many many other members.
There are many sick people here treating with interferon and ribavirin and if you can encourage the ones publicly who can't treat you should at least extend that same
support and courtesy to the ones who are treating. We all have the same thing in common regardless of how we choose to deal with it.
Who cares about the ones who can't treat? I do Mike.
If you care about people who cannot treat and you are one, then are you looking for alternatives? Are you doing anything for your health? Are you looking for information about what to do next? Or have you given up hope?
I would think that someone in your position would appreciate useful information as well as kind words of encouragement. As for people in treatment, my heart goes out to them. But I have no advice for them. My experience was so bad I wouldn't know what to tell them.
It's been nice talking to everyone, but I am going to bed. Going skiing in Vail for a week in the morning!
You have your agenda and just so you know I understand what you're saying.
Can't say I agree but then who's right and who's wrong was never the point.
Youngladywfear asked in Liv52 is believable. She will be treating with SOC shortly so until then I say now as I did in my first post, it can't hurt. Don't know how or if it effects the treatment drugs.
thank you jdwithhcv,. and thanks everyone for the input. my sister is really into natural supplements and organic foods and she had asked me if i had ever considered a holistic approach i guess because of the side effects. she told me that if i told my parents i was considering it at all that they would not be so supportive of that approach. my parents are the most supportive people in the world. when i told my dad he said no way. he told me that i am extremely fortunate that there is even a potential cure available and i agree with him.
although if its not successful i will undoublty be searching for another form of treatment. i go to the center for liver disease in pittsburgh and they are right up there with the latest advances in treatment. there is a new medication coming, its a protese inhibitor, (i know i misspelled that) and i forget the name but its very much real and its the absolute for sure truth.
its still in clinical trial and i wasnt elligible to participate in it because i had been too recently taking the perscription drug straterra. even if i were to be in the trial, its still only a 50% chance that i'd get the actual drug. i don't know if any of you have heard about it yet, but if you have access to a place like this then you've probably heard about it. it should be available by january of next year.
this new medication offers an 80% success rate as opposed to the current 50%. what it does is disables the virus from replicating itself. since hep c is a cookie cutter virus without dna it can't change its form, like hiv can, it can only duplicate itself. so from what i understand, it not only assists in curing(the new drug) but also in preventing it from coming back. again from my understanding and from what my doctor told me, which is where i got all of this information, if the first round of treatment should fail, then i will have another and better chance of it being successful in round 2 with the new drug. hopefully it won't come from that, and i don't want to get anyones hopes up if i misunderstood, but i don't think i did and i think for people that weren't successful with the SOC of interfuron and ribofavrin, the combination with the new 3rd drug might be able to do it. again at least thats my understanding.
For a new person coming on here, asking the question, it's probably helpful if you state why you don't believe it. I guess that's up to you but I think it would be helpful if they understand the criteria you're making your assessment by so that they get an idea of what should be taken into account when reading such things.
Trinity - it COULD hurt. What do you base that on? There is a list of natural products in this compound and it's possible that any one of them could actually be damaging rather than helpful. I looked through the list of ingredients and don't find many of them recognizable as the usual ingredients in a liver-friendly compound. For a person who has never taken supplements that's a pretty ringing endorsement of "can't hurt". What makes you think it "can't hurt"? Not saying you're wrong, asking what you base that on.
Willy50: Thanks for digging a little deeper and coming up with a reason for your point of view. I too found the studies listed that I did read lacking.
Mhudnall: what do you think of THIS compound? That was the question in this thread, yes? It's not much different than someone asking about a new drug that's come on the market and is trialling. The other drugs already on the market don't give it validity, it's got to be taken on it's own merits. I didn't find the studies on this particular drug very compelling for the simple reason that it starts out talking about Hepatitis C and yet the studies I chose to read from the documentation that potentially had the most to do with Hepatitis C based in their titles really had very little evidence on the ability to have any benefit to those MANAGING THEIR HEP C. What did you think of the studies on THIS product?
Maybe MedHelp should start handing out gold stars for people who post alot becuase that obviously means they care more than everyone else. They can put it on the back they pat themselves on.
I don't know if you're looking at this as simply an aid to help your liver stay healthy or if you're looking at it as an alternative cure to drug therapy.
It's not a cure. That is a definite. It's possible that this compound helps but the way they position their advertising on the link you've put up there, they don't make it very clear that what they're offering is not a cure. They imply that what they offer is an alternative to treatment for Hep C. It isn't, when you're talking about cure. When a product starts out on that kind of premise, I tend to walk away pretty fast regardless if it has any beneficial properties for the liver on any level. If they're going to mislead me on something as important as a cure, then I don't trust them on ANY level. That's the way I approach these kinds of product sellers. I first look to see how they promote their product. If they don't care that their advertising is accurate then they don't care if what they put in their product is helpful or not. They just want to make money and I'm not going to help them do that.
I did read through some of the studies just to go a little deeper and I didn't find them very relevant to Hep C at all. Which makes me wonder why they include all that Hep C info above and again, the conclusion I come to is that they're trying to give an impression of their product that is false. On that alone, it's enough for me to discount it.
thanks for the prayers buddy. i can use all the help i can get.
i know you are desperate to do something since you say you cant treat with soc drugs but keep fooling yourself, just like everything else you tried the herbs will fail you the same way. then you will be on here pushing your next "miracle alternative". If I was one of these quacks i would love to have you as a patient.
ps, you are wrong about me wanting you to leave, you will take care of that yourself :-)
and for me not using caps, sorry if that bothers you i'm just so lazy
I checked out the link you provided and then went the research part. I only saw 2 that were done in 2004, one was for acute hepatitis and the other one was for hep a. Everything else was dated in the 1980s or earlier. Long before they knew the details of hep c.
I don't think it has anything to do with us based on what I read. On the other hand, anything that helps the liver recover from damage can't be bad for us to take while waiting for tx to kill the dragon.
I think someone said "to keep the liver healthy" that I believe should be key here...
the object is A...to be cured if we can be
B. to slow the disease process if at all possible.
these two goal cannot nor should they be mutually exclusive.
Understandably docs don't want more substances mucking up the works while folks treat...but look at the Rx's they put us on and what they do!!! It's not like the herbalists have a corner on questionable substances people!!
anyone who reads what you wrote, VL dropping several million, cannot help but wonder if some of these substances have validity.
I am stunned and I don't stun easily.
. I expect results from these regimes, but those are impressive. What lab does your PCR's? What has your doc had to say regarding those numbers?
first let me say how sorry I am you are facing all this...especially the young should not have to.
secondly, you should try to reenter the PI trial, certainly that would be your best shot in the near future, some trials enroll over several months patients, in a few months you may be free enough of the offending drug to enter.
thirdly, the new PI's will be out in another year or 2...so you could treat then and you'd know you were getting the PI, that would be best, as in a trial you can't be sure.
what stage grade are you??
fourth, I checked out liv52 a while back...
here is the part I found intersting:
note that this study was done on children...less prone to lying or exagerating...
the first part of the study, throw out...it is too subjective...what constiuet more belly swelling is partly objective partly sunjective, those numbers tell nothing IMHO.
the second part of the study, the labs do tell a tale. Here we see across the board reductions in alts and bilirubin.... the bilirubin in particular is of interest. these are children with late stage disease....to see that number cut in half means something!!
You will note that not much change occured in the first three wekks, but by wekk 4 and 5 signifigant changes in 3 key labs did occur...meaning the herbs must accumulate in the blood stream before therapeutic benefits are seen...much as Ribavirin also takes time to reach therapeutic levels.
If you have to postpone treatment, there are many things you can do to help your liver profile, and you will find support from some folks in here, although not all are so inclined. I worked in both sides of the industry, for Md's and alternative docs, and some things in each camp are good, some not so good...that's the real truth.
Use your own brain, God gave you one...and you are on the right track to be inquisitive. The main thing would be to try to reach SVR eventually, if possible...but meanwhile, don't drink, eat healthy, and do what you can afford to do to help your system to fight the good fight. That's my 2 cents. Best to you.
I use Sonora Quest labs in AZ - HCV RNA PCR QUANT. My doctor is very pleased with both the VL and the enzymes and says that the fact that all of my other labs are in normal range is a good sign for my liver health in general. He wants me to just keep doing what I am doing, because he believes that progress is being made.
To sum up my argument: the point of view that only SOC is helpful for hep c is not backed by evidence. In fact, the evidence supports the contrary. An emotional bias against hepatoprotective substances and anti-fibrotics should be labeled as such, and such biases should be called out when they are masqueraded as objective analysis. I have never heard an intelligent argument that supports the claim that hep c patients should not do everything in their power to protect their livers - whether before treatment, or especially, after failed treatment.
Again, if anyone would like to see my labs for themselves, send me a private message with an email address and I will send the pdfs of the actual lab reports.
BTW, Vail was great last week. I don't think I could have pounded the slopes as hard as I did without enjoying a certain degree of good health. Caveat: the preceding was a subjective analysis!
Back to the drawing board and the horsies go round and round and round the merryground looking for the brass ring in the manure on the floor.
Seriously I don't need to see your labs liver enzymes go up and down and up and down and honestly if this is how you are going to continue to monitor your liver damage because of the fear of SOC then good luck - seriously but don't complain in a few years when it's too late. But please don't stop trying to convince educated people there is a way around this disease by taking laxatives or drinking juice - nobody here has bought it for the past few years I don't know why we would at this time but it makes things interesting and proves that people hit their head against a wall so many times that cuckoo clocks chime and yet they just don't care.
well said NYgirl. you know I feel the same as you do when it comes to this same old rhetoric.
like i have posted before and hope any newbies see is I believe that there is a place for supplements BUT if you want to be cured of HCV then you need to treat with Interferon & Ribavirn. NO other way around it.
people can spin it anyway they want but it always comes back to the same thing.
"BTW, Vail was great last week. I don't think I could have pounded the slopes as hard as I did without enjoying a certain degree of good health. Caveat: the preceding was a subjective analysis!"
That's awesome man. I'm 26 years-old, best shape of my life and probably couldn't have kept up with you on those slopes for a week. :) I snowboard though and know how rough it is on a person who is not in great shape to begin with. Wishing you continued success and health.
a molecule is a molecule. It is not an intelligent life form who knows from whence it has sprung.
whether something has come from nature or the test tube (the test tube which BTW only rearranges molecules and isotopes that already exist in nature, they take natural products and add or subtract substrates from them), so whether it came straight from a test tube or from the petre dish known as planet earth makes little difference. It's just a molecule...it has no agenda and doesn't know how much will or won't be charged for it.
A rearranged molecule may work better, may be a purer "pharmaceutical" form, but it still stems from existing natural foundations. Now we are even discovering that in some cases the refinements can be a detriment as certain isotopes in the naturally occuring compounds aide their bioavailabilty or therapeutic result. So sometimes refinement is a plus, other times it is not.
(to understand this just look at the humble orange...absorbic acid is a identical molecule to C, but without the bioflavoids etc there now is ample proof that many benefits to health are lost.) It may seem to some that we are "fearfully and wonderfully made" and designed to utilize and digest the natural substances. That there may indeed be benefits untold and poorly understood but that nonetheless can help restore health in these complex naturally occurring items.
What matters is not who made the molecule, what matter is the results.
When it comes to Sustained Viral Response I'm in agreement that only current SOC has shown the ability to totally eradicate the virus. An attempt to aide the immune system and completely annihilate this virus has only been achieved by this method.
But for Americans, who are mostly harder genotypes to treat, the 50% success rate leaves a lot to be desired. The other half are doomed to progress to ESLD unless something gives.
When it comes to reversing fibrosis or effecting liver metabolism many natural products are showing remarkable promise and they are now being subjected to the same diagnostics, the same double blinds and lab standards as any other drugs are.
The fact that the studies are small does not negate their result.
Pharmaceutical studies are larger because they have more money to spend.
I read somewhere that the average cost just to get through a phase 1 trial study (for 100 people) costs 1-2 million dollars. I don't know why they are so expensive, but I'm assuming that may include the cost of development, who knows.
In any case, only one blood pressure medicine being studied in New Castle England has shown any progress in reversing the scarring, and of course can't be used by everyone as it lowers BP.... whereas many natural products have shown progress in halting or reversing fibrosis and need to be scrutinized.
If one cannot halt the virus, but can aide the liver in healing and replacing with healthy rather than fibrotic tissue...why would other hcv patients oppose that?
Plenty of research now shows it has to do with methylation, collagen suppression, and a host of other chemicals, that can be heightened or suppressed via the addition or subtraction of certain dietary and supplemental compounds....to ignore all this research seems to me the height of folly.
We all benefit from free and open research, from finding minimally invasive ways to treat or cure ailments. The only folks who don't benefits from such discoveries are the big drug companies who cannot profit from non-patented items, and the surgeons.
Personally, I'd rather take steps to prevent HCC for instance... than to have my surgeon cut off parts of my liver (one of the the most dangerous internal surgery of all).
I really don't understand why the resistance is so strong to a 2 pronged approach.
Perhaps if one treated at stage 1 or 2, and had no fibrotic damage, it might seem moot to them, but to ignore or not try to reverse damage, or to negate those who do try, would be the equivalent to saying to a cardiac patient of someone having a quadruple bypass, return to eating 4 Big Macs a day. To ignore what could help heal the organ seem counterproductive. to me.
We already extend the advice to people not to drink...which subtracts two very dangerous chemicals known to cause cell death and fibrosis from the mix.
Why then, can we not be open to other preventatives?
I'm a little surprised actually that one person above suggests that the "educated are being duped." REALLY? Perhaps,..... or perhaps the person who said that has been.
I have privately corresponded with many doctors, pharmacists, lab techs, etcetc...all of whom had formal education, all of whom would disagree with you!!
After all, we have been privledged to hear from HR in this forum, HR, who invented the NGI-PCR viral detection systems, who holds numerous patents on the same, and has spent a lifetime researching this disease as a medical doctor. He also has been duped I assume? If you understood the intelligence of this "duped" professional you'd all be stunned!!!!
Is that what you have us all believe? That no scientist who gives these studies credence has enough intelligence but they've all been duped?
It's no wonder then, that the educated no longer show up to educate....look at the reception they get!!!
Frankly I'm a little surprised that after having even medical doctors, such as HR come in here and explain the chemistry somewhat to us that we would still be closed to the idea of a two pronged approach.
Not that I think there isn't snake oil out there...but this is where using our brains comes in really handy.
Let us Review the research, remember that studies will be smaller due to lack of huge deep pockets to study these substances (where huge profits will not follow)...but remember that when you begin to see a plethora of studies done using the scientific method, that just because a doctor is Indian or Chinese does not negate the validity of the research.
Surely we are not that closed off to new information!!!!!
BTW, Mhudnail was unsuccessful in treatment with SOC. So should he have done nothing?
I just do not understand why we can't come and reason together here...certainly those who have failed treatment deserve a chance to try to maintain their health.
No one in the heart forum gets reamed when they decide to start walking, or take omega oils, or cut back on their saturated fat intake.
So why such adverse reactions to things showing promise for liver people?
After all, WE ALL EAT EVERY DAY..........right? Do you stop to think, now gee, this carrot is going to boost my immune system, it will help me to see at night by restoring the levels of visual purple in my eyeball through the actions of vitamins A & D...
we don't think about all that....we just eat the carrot...and we know it is good for us.
it promotes health.
Likewise, herbs can be beneficial to health just as regular vegetables and fruits we eat every day.
So the idea of looking into and at the research and discovering which things may help us, and then using them....why is this a bad idea. We are changing our chemistry everyday by what we eat...why not eat for optimal health...why not supplement for optimal health?
the only caveat I have to some of the liver formula products out there is that they do not take into account stage of disease. Sites that promote tonics for any stage of disease should be avoided. One size does not fit all here.
Licorice is added to many formulas but it contraindicated in late stage LD, yet shows benefit in early stage disease. Ergo this is one area where folks need to do their homework and be assessed as to stage/grade before starting any regime.
The good news is, that doctors, like Dr. Zhang for instance, take into account people stage grade, and the licorice is not used in late stage cases. So we see that the trained medicals using herbal supplements are not just throwing the kitchen sink at everyone...they are following the science and this is encouraging.
there are also contraindications if the truth be known for half the foods we eat..keep that in mind.
there are also contraindications to many things if one has certain other conditions.
Even vitamin C, good old harmless vitamin C can add to iron overload in liver patients by rendering the iron in foods more absorbable....and should therefore be eaten separate from regular meals. I eat my oranges for snacks now, so I can get the liver benefits of C without the iron absorption component.
The bottom line is folks need to do their homework, and I search out each substance and read all the pubmed studies etc, pros and cons, before deciding what to add to my regime.
There is ample reason to believe that an educated holistic approach produces better results than the standard of care alone in most instances.
By holistic I mean SOC AND adjuncts. Take a look at some of the centers using these approach, like Cancer Center of America for instance...their success rates are higher than Soc alone....adding nutrition, dietary controls, appropriate supplements to the standard medicine increases positive outcomes across the board.
I'm not suggesting anyone chant mantras, or drip wax in their ears to get the drugs out here.......
(we need to use our common sense.)
Only that they take a look at the studies, the science, before dismissing out of hand those things which we are only now discovering have actual scientific validity.
It is my understanding that viral load does bounce around...but I have never seen several million reduced to a few thousand and remain there have you?
Also, are you all saying that even if Mhudnail produces the labs as proof that it will have no bearing here...will mean nothing to some of you??
I'm rather confused by this.....if a person on SOC had that great of a viral reduction you'd all be rejoicing....what gives??? At 3000 his disease is going to progress much more slowly that at several million where it was.
Why not be glad for this?
Boy, I wish I had SVR'd. Not only would I be free of the virus, but apparently I would receive omniscience; I could be absolutely sure that my opinions were correct, unencumbered by such trivial things as facts, evidence and reason. And I could lecture people who actually have the virus that they only need to be like me and think like me to be free! Because everyone's experience is exactly like mine, and if someone thinks the opposite, well they must be wrong, because I can't be wrong, I'm omniscient! I'm SVR!
"And hast thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!"
He chortled in his joy.
'Twas brillig, and the slithy toves
Did gyre and gimble in the wabe;
All mimsy were the borogoves,
And the mome raths outgrabe.
If you are implying that we are misguided because some of us don't believe in supplements as an adjunct to SOC or an alternative to living with hepc I find that to be the same tunnel vision you claim we are guilty of.
There is absolutely nothing wrong with my brain. I have read and studied more about hepc than I've ever wanted to know. There are no studies that show the progression of fibrosis occurs at a slower rate if the viral load is low. Nor are supplements going to keep those of us with stage 3 and above from crossing over to cirrhosis.
To each his own I say, and if one chooses to live in la la land with lots of shiny things in it....unicorns and rainbows and fairy dust than so be it.
My notes from a recent Vertex presentation tell me that there are about 350 thousand treatment failure patients in the United States. I believe this is a fact.
Here comes another; they also mentioned that the chances of success for retreating is about 5-15%.
Some people....like Mike cannot re-treat. I know a few people like him; well like him in the fact that they cannot TX. One cannot since they suffer from extreme depression, another that cannot tolerate IFN, yet another who gets anemic from Riba, several with immune issues who cannot get anywhere near IFN.
What do you want these people to do; nothing?
Vertex also had a chilling table about mortality that follows failing TX.
I feel that this board...... no wait, rather some members are often very intolerant of anything that smacks of alternatives. Please keep in mind...... that is all some people have left to play with. I'd be willing to bet that were you to find yourself (or a loved one) in a similar situation you would be checking the stuff out yourself and would be grateful for any insight as for what to do.
People can treat in a few years with the new forms of TX, but first they have to stay alive. Try to grant them some freedom to choose, freedom to converse, freedom to use the Forum.
Hey; It's America. ; )
If they choose incorrectly, they also have that freedom as well.
I can't see anything harmful about lowering ones viral load or LFT's. A lower viral load is associated with a greater chance at viral response when treating. It seems like a good thing. Anybody disagree?
there are plenty of studies that support a dim view of high viral loads.
You are referring of course to there being no direct ratio with the hcv covert between vl and progression vs. between inflammation and progression but in my opinion this is a myopic analysis because it fails to factor in the cascading effects of the retroviruses in general.
In co-infected people the stats are staggering, there are over 20 biomarkers all indicating that the presense of HCV accerated the progression from HIV to AIDS at an alarmingly faster rate, ergo the virus effects how all else works, or doesn't work to be more presise.
in HCV alone, higher VL has been shown to decommission the endocrine system much faster which in turn produces the inflammation famous for our dimise... (dozens of studys showing marked declines and metabolic syndromes in most hcv patients) and as a result this lead to less tissue repair, less natural interferon, more hydrophobic cell pairs, and so on, and so on. (fully half of hcv people have thyroid issue and pituitary issues, both of which lead to more cell death).
So whether you look at it from the viewpoint of one statistic which fails to take into account the downstream effects is a matter of approach I suppose.
to me , one must look at liver cytosolic 1 antigen-antibody systems in hcv and reflect that perhaps there's more than meets the eye with all this, but some may differ.
If you think about it, every virus, from the common cold to polio, from the flu to menengitis are most deadly in their initial bloom of high viral load, this is when the damage is most severe and the patient is sickest.
As you may know both thyroid and pit. disease cause heart anomalies.
Why we assume that higher VL is not taking a similar toll may be because if a persons heart stops due to lack of repair from endo dysfunction we call it a heart attack, not a direct effect of the viral impact on the whole system. But should we?
Same with pancreatic issues....we look at the person as having died of diebetic complications, without regard to the fact that the hcv biomarkers show that the constant attack is what brings on the diebetes, the heightened INF load cancels out insulin, which leads to overproduction and eventually IR, type 2 and then type 1...
so which came first the chicken or the egg, you decide..
I've discussed this stuff before in here but it gets very little response from folks. Nevertheless your risk of several diseases shoots up while you carry HCV, and having a high VL is like being in the acute initial stage of that all the time.
just google hcv and thyroid, or any other gland and see what I reference.
take into account also the marked difference in life span between those with HIV being treated for viral load suppression and those left untreated. Treatment suppressed virus which in turn suppresses the biomarkers which turn our bodies on themselves.
To suggest that hcv has no similar components seems premature. The research has not been there to definitely prove my hypothesis but nevertheless if you hunt and peck around you will find that those things I mention have been studied and verified.
we currently spend 3000 dollars on aides research for every 20 we spend on hcv...so I'm not surprised that all the tie ins have not been confirmed yet but they will be, in time.
I'm implying that it is insulting to dismiss out of hand that which has been shown to have merit just because it's a natural. I'm implying that calling people duped and deceived because they have concluded based on their research differently does not make them the "duped educated", itself an oxymoron. I'm implying that to call others fools is itself a folly, especially when the verdict is far from certain as in this case.
50 years ago the US agricultural department did studies to discover why certain sicknesses were showing up in our livestock...the result after studying thousands of animals for dozens of years is how we now have come to understand the daily minimum requirements exist for all species without which health cannot be maintained. Because of these studies our herds and flocks are now the healthiest, most tumor free animals in the world.
I read all those studyies as a teen, and have been reading them ever since.
There are components that can benefit your health and slow disease progressions.
You can choose to believe that or not, as can I. We are both free to choose.
However, what seemed wrong in my brain was for folks to assume that anyone who subscribes to any non-pharmaceutical product to have been duped and deceived.
That is what I responded to. Sometimes those claiming to have superior knowledge do, and sometimes they don't....they just have prejudices or opinions not based on any scientific proofs....but personally I think we should be careful not to dismiss as fools those with whom we have disagreement.
You mentioned crossing over into cirrohsis...may I ask, do you drink? Because if you don't then you do that to slow your disease progression...is not this the same basic stategy? You subtract or add something, in the hope of not dying as soon...yet if others do similarly it's not OK...not if it goes beyond the narrow parameters as defined by oneself or one's doctor?
I come at this from a unique perspective, I worked for both medical doctors and alternative doctors for many years. What I learned is that each group has their own set of opinions and prejudices. Often times MD's rejected out of hand any and all supplemention in spite of mountains of evidence to the contrary, and likewise naturopaths rejected medical interventions like they were the plaugue.
from my perspective both these attitudes are myopic and borne of fear of the unknown etc. Unfortunately they pass on these views to their patients who often bear the brunt as a result. Let us take the best of both world and we may find ourselves able to reap unforeseen benefits. I don't just believe there are substances in nature that cure and heal us. Think of digitalis, aspirin, or penicillin to name but a few.
mimsy indeed.....I shall not recant the world is round
I'm implying that it is insulting to dismiss out of hand that which has been shown to have merit just because it's a natural. I'm implying that calling people duped and deceived because they have concluded based on their research differently does not make them the "duped educated", itself an oxymoron."
I have no idea whatsoever why you've addressed this to me. I've taken my fair share of battering on this forum for supporting the right of people to explore alternatives and to discuss them here without being continuously attacked for doing so. I've gone back through my post and nowhere do I see that kind of comment attributed to me. I'm trying to find where I've used the word "duped" or alluded to the educated being duped and I'm not finding it. Care to point that out for me please?
Wow. Now people who have gone through SOC and are unable to do so again are "afraid of SOC" if they explore other means to try and keep themselves alive longer. Maybe HR was afraid of SOC and pandering to those who are "afraid of SOC" when he came up with his supplements list? Perhaps those many posters on here who went searching out his supplements list were "afraid of SOC". And what do you say about the many people who do supplements between treatments in an effort to stay alive longer? Those people are misguided fools?
How many things on HR's list had clinical trials to back them up? I certainly never saw HR or his proponents take the kind of battering that others take on here for suggesting similar approaches. We don't have the same kind of clinical trials to go on for supplements that we do for interferon and ribavirin and the PI's at the moment and I'm not sure that I could point to a clinical trials for all of the foods we eat that are supposed to provide the benefits that we believe they do. We go on a certain amount of research though that seems to back it up or makes it seem like it might just be a benefit and we give it a try.
As for supplements not keeping someone from Grade 3 getting to cirrhosis .... well, doing absolutely nothing at all will not keep someone from getting to cirrhosis either. So people do what they can. And frankly, if I was Grade 3, I'd be researching whatever natural products are out there that would appear to have some benefit and I would be taking them until I could either do SOC again. It is someone's right to choose to do supplements or not however and I fail to understand why someone would constantly attack those who are doing their best to maintain their health and live longer in whatever means they can and would like to discuss that and share knowledge with others who are also on the same search to find those things aside from SOC that will prolong their lives. But no .. not on THIS forum. We can only discuss SOC here. And Gold Bond for the side effects from SOC. But certainly not what supplements people have decided to use and why. We certainly discuss treatment options on here til the cows come home. But not everybody can do treatment and some people are between treatment. Those people have the RIGHT and the NECESSITY to discuss alternatives.
Some people don't want to roll the interferon dice just yet. These same people who attack anyone who brings up anything to do with supplements would be the same ones who tell people to wait for the PI's. And why is that? Because the chances of cure will be higher with the PI's and possibility of shortened treatment duration - because SOC is no picnic and the odds of cure for Gen 1's below 50%. Some people think 45% odds of cure on SOC are odds worth trying - and I was one of them - and there are others that have come on here and determined for themselves that those odds are just not worth putting themselves through SOC. There are some VERY educated people here who are choosing the watch and wait approach and waiting for PI's that have decided that putting themselves through SOC at THIS point in history with the side effects of SOC being what they can be and the odds for cure being what they are does not make sense for them. I suppose those people are "afraid of SOC" also? Or are they making educated decisions on what is best for them?
And in the meantime, those who wait for a more effective treatment or those where treatment has failed them .. or even those who would prefer not to roll the SOC dice because the statistics say that they stand a chance of outliving their HCV rather than it outliving them would rather avoid treatment entirely for their own reasons.....can count on being attacked and ridiculed on this forum if they want to discuss supplements that may just be helpful to them. It's okay to talk about Vitamin D .. but let's not get a little too far past that. It makes some people's heads hurt.
I take glucosamine for my arthritis. It's a natural supplement suggested by my doctor. He handed me an article to read. No clincal trials persay. However, what is known about the properties of glucosamine suggest that it would be a good thing to take and experiences of those taking it seem to suggest it would be worth trying. And so I do. I'm my own clinical trial. Either it helps me or it doesn't.
I would be very interested in knowing what supplements those with HCV have taken and why. I would bet my right arm that there aren't many clinical trials that supported the decision but enough research to make them decide they'd be their own clinical trial and see if it worked for THEM.
The fact that we can't even discuss this here without it turning into a SOC vs alternative discussion EVERY SINGLE TIME and now devolving into people being accused of being "afraid of SOC" for doing so is ridiculous.
Seriously same old same old but it seems to take 39 paragraphs full of big words to say the same thing. I always find it odd that people who failed SOC but did attempt it suddenly later are so anti SOC afterwards. Perhaps it's not in the medication itself but rather in the outcome of the treatment.
New people do not be fooled by this approach and listen to the doctor if they think you need treatment do the treatment! Should there be things that would enable us to forgo treatment...we all would have taken the easy way out don't you think?
Personally, I don't like unicorns much - I find them scarier than treatment because they DONT EXIST!
Let's keep this on topic, and keep an eye on the tone. It's getting personal, and bordering on nasty.
The OP was asking about one thing, and it's gone way off course. Alternative treatments are allowed to be discussed here. Perhaps a couple of people from both camps could get together and do a health page on the benefits of SOC, some alternative treatments that have been studied, what is safe, what isn't safe, pros and cons, etc. You all would know what should be included more than I would, but maybe that would save some of this repetitive fighting.
"I take glucosamine for my arthritis" Might I suggest first, save your money and second read the study results from Harvard medical schools Glucosamine/chondroitin Arthritis Intervention Trial (called GAIT)
Again, thanks for pointing me in that direction. It turns out my money has been well-spent after all, particularly since I do notice relief, Vitamin D aside.
Particularly this part:
"If you get the green light, look for supplements containing a combination of 500-mg glucosamine and 400-mg chondroitin – and take three times a day. Be aware you may not notice an effect until several days or weeks after starting glucosamine."
I checked my dosage and it is indeed that combination of 500mg glucosamine and 400 mg chondroitin and it tells me to take it 3X daily or as directed.
Good information, Pro .. though not quite what you've read on the subject perhaps? I'm thinking an article put out by the Arthritis Foundation and analyzing data from the GAIT study is reasonably reliable however now you've piqued my curiosity and I'll continue to read but won't bore you or the others with any further commentary. I do thank you again.
nygirl: "New people do not be fooled by this approach and listen to the doctor if they think you need treatment do the treatment! Should there be things that would enable us to forgo treatment...we all would have taken the easy way out don't you think? "
To the new people ... just be careful listening to the doctor blindly. There have been some new people on here who have had doctors who rushed them into treatment without enough information on what side effects to prepare for or told them silly things such as they wouldn't have too hard a time because they were "happy" or because they were young. Some people were rushed into treatment based on a high viral load with no biopsy whatsoever as if a high viral load alone was sufficient reason to start treatment ... and it's not. My high viral load was actually a medium viral load in context at 2.1 mil and when the biopsy was done at MY request, I was only a Stage 1, Grade 1 and no need to rush into treatment at all - I got a different doctor.
So...new people....what's important is to determine how experienced your doctor is at treating people with Hep C, how current and up-to-date they are on their knowledge of Hep C treatment and to also do your own research .. and to understand that your doctor may not take into account your whole life circumstances when considering treatment but you should and to NOT just blindly follow whatever your doctor says until you know he/she is WORTH listening to.
Trish, excuse me time 1000x...I just got my T's mixed up...it was trinity I meant to respond to.
please forgive me.
but to Trinity and all I say...no one is trying to ream anyone, nor should we be, which is why I agree with the moderator, the tone should not become personal...
however, there are substances that do absorb, and do benefit...and those using them should not be called idiots....that's where the trouble begins...
I think people should be able to discuss these matters without the all the angst.
As far as gluco/condrotin goes,
it takes a long time to enter the cartilage because cartilage is one of the more impervious tissue types. If you soak a prune, or a piece of dried muscle like beef jerky for instance in water it swells right up...it's tissue allows for absorption, if you soak a bone in water it just sits there....cartilage is sort of in between the two. The orthopedic surgeons who sent me patients said it does work, albeit slowly. Patients, who remained patiently on it, also agreed it did help over time. Cartilage is very hard to rebuild, and torn tendons as well, snapped tendons never repair, so part of the issue is what is going on in the joint, not all injuries will respond well, certainly snapped tendons won't.
the one to watch out for that is a hoak is hydrolonic acid. For one thing it won't absorb at all unless it is micronized, which it almost never is, for another it is contraindicted for liver patients as is causes fibrosis.
This is what I mean by doing our homework, taking each thing, be it a vitamin, an herb or a prescribed RX and finding out the good, the bad and the ugly and then deciding.
BTW,can't speak for others, but me....well I am not in the least afraid of retreating, in fact I plan on it, as soon as I can get a PI on board I will retreat. I was just not willing to retreat with the same drug basically, with only a 30% success rate...that to me would be beating a dead horse...
if 80 weeks of those drugs didn't do it..what would make me think another year of them would?
Marcia, you are right MSm does help some, and it may be a good fit for hcv'er in that NAC, also sulfur has shown some good results in liver health as well...
the caveot here is that not everyone can tolerate extra sulfur in their system, I for one cannot, and it's like any other mineral you add...if you are deficient, then it may help, and sulfur has antibiotic properties as well...but if you are sensitive it could be a problem.
I reviewed all of mhudnail's labs this morning, and he has had across the board improvements in several key areas. Leukocytes, hgb, hemocrit, platelets alts'ast. etc etc etc..
His labs are from quest and labcorp and they reflect a several year history and reductions from millions to under 3000 virons per ml. after he bagan his current regime.
Assuming he remains at that level I would have to conclude that either the LDN or the Zhang's herbs have had a profound effect, since this is when the turn around occured, when those 2 items were added.
Unfortunately, since he began these 2 at the same time, it's impossible to pinpoint why the drop was so significant or rather, which item had the greatest impact, but hopefully he'll be in better shape when the PI's do come out to reconsider treatment.
So, Mike, keep doing what you are doing!!
I agree with NYgirl to the extent that the herbal remedies and pharmaceuticals that reduce viral load do not cure, nor is there any sign they will any time soon.
But as NY Girl also pointed out in another thread, for those who were non-responders or relaspsers, these subgroups need to be very proactive and have every right to explore alternatives.
A finger in the dike now may at least slow down the eventual flood, and may add enough time to the equations to give folks the chance to be healthy enough to retreat when new things do become available.
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