I just got back from LA where I had my second fibroscan. Both were done by HR. The first scan, done six months ago, showed an average of 11.5 kpascal for a high F3 fibrosis staging. A week later I started doing HepTech products. Six months later, today's fibroscan showed an average of 8.7 kpascal for a F2-F3 staging. Pretty decent drop in six months.
I am geno 1a, infected 35 years ago. Six years ago a biopsy also showed high F3, followed by a failed course of SOC. After failed tx I had a VL of 7 million, high enzymes, chronic fatigue and a destroyed immune system. Now I have great energy, low VL and normal enzymes and decreasing fibrosis. I am very happy that my way is clear: keep doing the same things and look for more reduction of fibrosis.
My protocol is 4.5 mg low dose naltrexone, Zhang herbs and HepTech products. Based on my readings, I will not change my protocol and will re-scan in another six months. At that time I hope to see another drop in fibrosis
Next week I will also do labs to check enzymes and viral load. My last labs showed a VL of 58 thousand and normal enzymes. I am hoping for close to the same results this time. I will post the lab results when I get them.
Not a cure, but I believe I am turning back the clock on my liver's lifeline. Severe side effects derailed my first tx attempts after 12 weeks. Accordingly I believe that another course of tx would have the same results. So I, like many hep c patients, needed an alternative strategy to forestall what looked like the inevitable. I'm happy to be making progress and, at the same time, to have great quality of life.
On the hepatitis Technologies web site they claim that their product Heptoshield, contains no ethanol. they also claim that it is the same product as essential forte N which is available in Europe. however the european packaging for essential forte N states that there is ethanol in the product.
I strenuously disagree with your assessment. Perhaps I should complain that the forum is being used to promote products for Roche or Merck. Treating people with HCV is easily a billion dollar per year industry. It was so lucrative that the pharms (Shering-Plough, in the case of the article) used to kick back money to the doctors. This was discontinued when the NT Times ran an article on it back in 2004.
To my way of thinking the MH exists to provide a forum for discussion and exchange of information about (in our case) Hep C, and all the peripheral information about it, yes, even including alternative treatments.
Both Copy and Cando also did experimental treatments; they were cured in trials using a combination of the new trial drug (Telaprevir and Boceprevir, respectively) with SOC.
Unfortunately, many people cannot tolerate treating with SOC. There are some people who have sufficient liver damage that current forms of treatment could force them into liver decompensation and possible death. I can name a few people who cannot tolerate the riba; it causes them to become anemic. I know of other people who it is felt, cannot tolerate the interferon. What are these people to do? Both of you are cured; you can afford to be cavalier about what you think is *proper*.
If one were to take a look at the Community side of MedHelp HCV forum (there are a number of them on the long term effects of interferonw/riba) you'll also find a long thread which details some of the permanent types of damages that some people who have treated have suffered. These are not people who are unknown to us. They are people whom many of us know, or knew who treated and who have since become disabled in various ways almost certainly due to current treatment with interferon and ribaviren. In spite of the fact that a percentage of people are injured by TX, this is the ONLY form of TX that YOU would allow to be discussed at MedHelp.
One could also list the number of people on this forum who cannot treat with SOC, but whom you would deny any sort of information that could help them live while they wait to treat with newer less harsh forms of treatment. These people deserve some help.
Or one could list people whom have been helped by HR in this forum; Gauf might be one, or Cocksparrow. Both were people who had failed TX and through some education and some changes in diet as well as changes in fundamentals in how they approached their treatments (you see, they didn't have access to protease inhibitors like you both did), they were both able to treat and SVR. That is 2 lives saved using treatments that are not available.
I really disagree with your stance. I feel that the forums exist for the exchange of information. In this case you have a well respected guy, HR who has the papers and credentials; not a quack. You also have another fellow Mike H, who is attempting to methodically record his data here. Copy continually harasses this member and attempts to disrupt any thread that is started on the topic. That violates the spirit and rules of the forum which guarantee members the right to enjoy the use of the forum without harassment. Maybe it's well intentioned .....but it harms the forum and it has the potential limit the means of people who cannot treat with current forms of TX to learn about possible methods to limit their damage while they wait and wait for a less toxic treatment to arrive.
I wish that you would chill out and stop hijacking threads, grandstanding, or insisting on how the forum is run and what information can be posted. As mentioned, I know that it is well intentioned but if it hinders useful information from being posted on this forum it could harm people who have no other methods to help stay alive.
if you go to http://www.hepatitistechnologies.com/store/product/69444/HeptoShield and look at the contents you see that it contains phospholipon 90G. they also claim their product contains no ethanol. if you do a search for phospholipon 90G you come to http://www.americanlecithin.com/TDS/TDS_90G.PDF which says that phospholipon 90G contains ethanol. can someone explain the discrepancy? it is not much ethanol but still hepatitis technologies make a point of saying the their product contains no ethanol. maybe i am making a mountain out of a molehill?
The fibroscan results sound great. I wish they were more available cross country and hopefully they, or another less invasive means of assessing liver damage will be in the near future. Do you plan to have them routinely?
Glad to hear you're feeling better too. Having energy sure ups the quality of life quotient, doesn't it? I'll be interested in watching your progress as you go along. Thanks for posting your results.
PhospholiponG is an ethanolic extract with the ethanol removed. The master file says that it is: "- Pure phosphatidylcholine stabilized with 0.1% ascorbyl palmitate" The master file also lists residual ethanol at a max level of 0.2%. That means that 0.2% is the maximum allowable as a residue. By label standards, it is correct to claim that it is pure phopholipid.
Agree with Willy. I certainly don't have any financial interest in LabCorp, but I'll continue to 'promote' their IL28B test until people start to snap to what a powerful tool we've been given. Sometimes you can't help mentioning brand name.
I don't agree with mhudnall's approach to tx or many of the conclusions he's drawn in his particular case, but it's his life and his body. Besides, if he's able to reverse fibrosis without killing the virus, he's going to be in all the text books anyway.
Fibroscans have been shown to vary in correlation with biopsies, but have not been shown to vary with other fibroscans. If the same machine, with the same operator, tests the same area of the liver at different time intervals, the readings certainly correlate with each other.
In my opinion it is a valid, non-invasive method to measure fibrotic changes through time. If you disagree, then do biopsies, but you must then accept all the variables inherent in that method as well.
I think Willie's post is measured and reasonable, while trin's post is the shrill post with the lecturing and finger-wagging - but that's just my opinion.
I went to Germany and bought Essentiale 300mg from my pharmacist over there.
The product is around since the 70s I believe and is made by a company
called Nattermann which happens to be in my hometown of Cologne.
The company got bought by some bigger pharm co. but PPC is still made
The PPC i got is straight PPC from soy bean.
There appear to be 2 different Essentiale products one called Forte N
and the other is just regular Essentiale 300mg. The regular version does not
list vit B , E ect...
Please MH, do not censor valid information that may help people that are running out of options. Fellow board members, if you don't agree with Mike's posts, please don't read them. You know where they are going.
The drug companies don't need advocates or soldiers posting. They already have an army on this board. They are the only game in town and that is driven home by all of us. We know it is the only cure.
Thank you, thank you for discussing the above, but we know what will probably happen. I guess worst case scenario we keep our PMs as a pipeline to pertinent info and hope.
The emphysema part of my copd is advancing fast these days, I've had to cut back my hours at work and some days I can't even make it to the mail box. Because of this my hep doc doesn't want me to do soc and probubly not even when the new meds come out. I f I get anemic and get sick I can pretty much kiss my life goodbye. I almost died last year from a lung infection and don't want to ever repeat that. I know esld is awful also but if I can get tips on alternative ways to keep me healthy,not curedI I know, it's a good thing.
No one is trying to censor anyone. if you believe in what he is saying then by all means give it a try. Mhudall is clearly advertising. He is not trying to help anyone. I can't recall him ever helping anyone by answering a question directly. His posts are always about "HIS" treatments and the many different things he has tried. promoting and swearing by them until they don't work then he moves on to the next one coming here to say how great it is. I see right through him and know exactly what he is doing! Apparently MH also knows what he is doing and is why they have taken down many of his nonsense threads. Hopefully the same will happen to this one.
Trinity: Hepatitis Technologies is NOT the only game in town when it comes to supplements. I do believe that was the point.
If that was the point, it was totally obscured in the call for the thread to be pulled and accusing it of being spam and shilling for the company. And nowhere did I see that claim being made, that it IS the only game in town. It's simply someone stating what their own protocol is - no different than what is done by many, many people on this forum so that we can all learn from each other - whether that protocol is interferon and ribavirin with Alinia or SOC drugs administered with a ribavirin lead-in ... or whatever it is. For those folks who are not able to do treatment or having to wait for treatment, these kinds of discussions are useful - whether it's Ev posting what Joe is taking, etc. while trying their darndest to manage their Hep C without being able to do treatment.
I don't see anything at all unusual about yet another post sharing what protocol they're following. There was another thread by someone started recently by someone who's doctor wants to move her to interferon shots daily at 1/7th the dosage a day. Very interesting discussion. All useful.
I very hope this thread is not removed. The content of what mhudnall posted is very valuable. Furthermore, I can't see how such information could be disseminated other than in a patient-focused discussion forum. Anyone believing that patentable molecules distributed, at obscene cost, by big pharma is the only way to "cure" hcv is certainly welcome to their opinion. For the rest of us it is very helpful to share information. The whole area of supplements is fraught with uncertainty. Nevertheless in the midst of the uncertainty there is real value. SAMe and silibinin are two molecules which have recently received very credible validation. Neither will provoke stock speculation.
Sharing preferred supplement vendors and regimes is as valid and helpful as Trin's recent list of RBV suppliers, Magnum's posts on vrtx "insider" information, Mike's list of alinia suppliers, discussions of when to add rescue drugs. etc. etc. We're trying to help one another and of course we believe our chosen path is the best one.
mudhall: looks promising but don't underestimate random fluctuation. I had my FS score drop from 12 something to 10 something over two years and don't believe for a minute there was any improvement. The opposite in fact. I also took a quercetin supplement which was intended to suppress hcv reproductive efficiency: http://www.ncbi.nlm.nih.gov/pubmed/19839005 and my VL climbed from the 6-800,000 range where it had been for years to 11 million. The truth is out there but it's not easy to find.
Duesseldorf Germany Heinrich Heine University Klinikum
under Professor Dr. Haeussinger. (one of the top liver specialists in Germany)
They use FS extensively for over 6 years and are very experienced with it.
Average out of ten readings was 8.0 kPa.
Got a medical report including a picture of the scan.
I than did 7 months of alternative protocols.
Mt Sinai Hospital under Dr. Dietrich I repeated FS with
Dr. James Park.
Result out of ten average 5.9 kPa.
I did not want to believe it and called them up again to repeat
FS one week later with assitant to Dr. D.
Result out of ten readings again 5.9 kPa.
I showed them the medical report from Germany with print out from
FS including scan image. They told me by that image they can see
that the scan in Germany was performed correctly and that they got
a good reading. So I challenged MT. Sinai please find the 8.0 kPa reading from
Germany in my liver. They could not find it and the only explanation they had
to offer was that sometimes inflammation can cause a different stiffness reading.
Since I do a lot of bloodwork I knew my LFTs from back in Aug 09 and Mar 10
and my inflammation was higher in Mar not Aug.
I since went on treatment and repeated FS @wk12. (Mt Sinai)
again the average out of ten was 5.6 kPa.
My next FS will be at EOT and again six months after that.
i am sorry if i post as an hbv carrier but HR did help very much in hbv forum too and thanks to him we had the choice of correct drugs avoiding the one who just create resistance so i am very thanksfull to him
he also posted about antioxidants a long time ago and i did use them both from food and other products not related to hep tech and they did work for me too, i just made a fibroscan the other days after about 10months
the antiviral i use make hbv und in almost 100% cases but the decrease of fibrosis is about 3,4kpa, i am in the compensated cirrhosis stage with nodules and abnormal liver form (well advanced), using the antioxidants posted here my decrease has been:
15.9kpa nov 2009
16.3 march 2010 (well known pick before advanced fibrosis regression)
13.9 july 2010
9 oct 2010 (9kpa for hbv is f2, 9.1 is the start for f3)
so i thank HR for all the posts and whatever the antioxidants come from diet, other supplements or hepatitis tech they do help very much in cirrhosis/fibrosis egression
as to fibrosis hbv and hcv make about the same damage, hcv is just faster and more aggressive, and hbv easier to control by drugs but once complitely undetactable the regression of fibrosis is about the same for both viruses
its a pity you are just starting to use fibroscans so late, in italy they are used as early as 2004 especially since biopsies are not that reliable at all and useless to monitor therapy results every 3 months
"Do any of you see a potential conflict of interest when the supplier of the supplements is the same person doing the fibroscan?"
Not if the operator is an MD, and is operating in that capacity.
Do you see a conflict when drug companies fund and design studies on their own products, instead of objective third parties? Do you think they ever manipulate study design to maximize results? Fudge data? Pay doctors to prescribe their products?
The pharmaceutical world is defined by conflicts of interest. Do you see that?
I had a fs in aug. Showed 6.6 K another one 3 wks. later same machine different tech also showed 6.6. Had a biopsy at a completely different med centre 2 wks. after that showed mid st 1. This was all in prep. for acceptance into drug study. THe reason I mention this is after all the results were given to the head of the study were I am and who very heavily had always relied on biopsy results ,said that the fs in his opinion gave him the exact same result as the biopsy. His quote to me was," in my opinion the fs is going to be the way of the very near future to dx stage of fib.
I see CURE from hepatitis c in the pharmaceutical world. I know, I know, you can't ever treat again because biopsy and treatment almost caused your demise. Maybe one day there will be drugs that will eradicate the virus for you without the killer side effects or they'll develop a biopsy technique that is non-intrusive. Or maybe not
We haven't had the means to get fibroscans and many labs but Joe has been busy building a 12'x8' chicken house this week. He wasn't feeling well enough to build a 4"x6" bird house before HR's supplement suggestions turned the deal around.
HR is a total hero to Joe and I and it hurts a lot to see him attacked for the help he has offered.
It is a wonder that Mike H. has had the tenacity to keep coming back to tell us his updates considering all the grief he is given. Thanks again Mike H.
I have been feeling all abandoned around here lately while trying to tell people that they aren't out of hope if the TX drugs fail . Maybe not a cure, but we at least were able to resume a life again.
I had just told Joe this afternoon that I had decided to give up posting here because it's been really getting me down lately. I have such a habit of coming here to get new information and I know I won't stop looking because I wouldn't want to miss anything really good for Joe. I used to have a few allies who also put high value on HR's words and I am glad they have SVR'd and left but I had about lost all heart for posting until tonight. I'm getting my second wind...maybe.
I know my posts are very subjective but telling my experience is all I have to offer. I had about decided that nobody wanted to hear it anymore and I was willing to stop talking but now I see there might be a few people around that are still interested.
I have said it before but I will say it once more. HR's posts happened many years before Hep Tech. I did my best to seek out the best match for each of the the supplements he discussed. It isn't easy to explain to new people what he said to take and why. He never issued an entire list but addressed specific questions over the course of many months, and you were left to figure it out from his technical way of putting things. There were others like CS,Gauf, and goofydad (in his serious mode) who helped me decipher and interpret the science. I bought most of the supplements from Swanson Vitamins or Iherb for years. They helped immensely. Hep Tech products have made it easier to know I am getting just the right thing but if I couldn't get them , I would go back to what we did before.
HR's words are right there in the archive for anyone who wants to see what kind of person he is. I don't know how you fit that big of a brain in to one human head.
Oh my, I must have my wind back because I have gone on forever.
Hoping for a healthy, well balanced Medhelp,
It doesn't matter who does the FibroScan an MD or not. It has been proven to be no better then a FibroSure blood test. Very inaccurate for assessing the middle stages of fibrosis. So your statement that you are " turning back the clock on my liver's lifeline" is questionable.
Don't you think if there was any validity to the FibroScan that the FDA would have approved it by now?
I think that if used along with other things like a biopsy, fibroSure, physical exam,other blood markers, then it has place. Otherwise it is just another test to rule out cirrhosis.
Anyone who thinks Fibrosis is going to reverse in 6 months time is just fooling themselves. And someone who puts their belief "only" in a FibroScan to assess liver damage is even a bigger fool.
I wouldn't expect anything more from someone who pays for Zhangs herbs.
Regardless of how I feel about this subject if in fact you feel better and think you are benefiting from alternatives then good for you. Best of luck
The point is that HR is now associated with Hep Tec and is no longer an MD coming here to help people out of the kindness of his heart. It is now about business. That is all I'm saying. Take an Ad out with MH.
FYI, a few years back a couple of us members were so grateful of the help HR provided that we sent him a gift cert for X-mas. His supplement protocol was used by many including a few supplements I still take to this day. I respect his credentials and appreciate the fact he invented the most accurate test to measure the viral load.
Here is a list he once posted:
Here is a list of supplements to reduce fibrosis. Hope this helps!
HRs' Liver Lover Supplement List
Jan 09, 2008 05:34PM
1000 mg of Flaxseed Oil (ALA/omega 3 450 mg / omega 9 110 mg) x1
Raw flaxseed/ 1 teaspoon daily
Hepatapro PPC (900 mg) x 2
Resveratrol (500 mg) x1 and x2 (alternate every other day)
NAC--(n-acetyl-l-cysteine) A sulfur compound that is a precursor of glutathione and protected sulfur-containing amino acid (600 mg) x2 with Vit C (500 mg) x2
TMG (750 mg) x 2
Taurine (500 mg) x 2
Life Extension Super Curcumin W/Bioperine 800Mg 60 Caps (800 mg) x 2 / Powerful Antioxidant Properties to scavenge free radicals
Enhances important detoxification enzymes Curcumin increases the secretion of bile by stimulating the bile duct. It also protects the liver by detoxification, stimulating the gall bladder and scavenging free radicals. With the help of the adrenal glands, it inhibits both platelet aggregation and the enzymes which induce inflammatory prostaglandins. Curcumin may also help break down fats and reduce cholesterol. Large doses not recommended in cases of acute bilious colic, obstructive jaundice, painful gallstones, and extremely toxic liver disorders
Sylmarin (425 mg) x 2 / Milk thistle provides hepatocellular protection by stabilizing hepatic cell membranes.
Green Tea Extract (300 mg) x 2 /
I'm sure there are times that I post information that some people have may have absolutely no interest in, or perhaps disagree most wholeheartedly, but my hope is to always find that in sharing our experiences, commonalities, differences and personal perspectives it brings us all to a better understanding of what it takes to conquer this disease and its negative impact on our lives.
We all come with our singular perspectives, and we all do and post what we think is best as it fits our individual circumstances and personal experience. But, we all know what works for some doesn't work for others. In many ways, that's the wonder of this forum -- that though we share in the curse of hep c, we're all looking to find ways to make it right, from many different angles and approaches -- some with better success than others, but we're all here to share our stories, for better or worse. So far, medicine and science hasn't got it 100% right yet, so we're all left searching for better answers. The bottom line in all of this is whatever you might be considering with hcv, whether pharmaceutical, supplemental, or nothing at all, you should be talking it over with your doctor.
mhudnall: It is always encouraging to see improvement when fighting this disease, and my hope is that your liver condition is indeed improving -- it is however, a sobering reality that all methods of assessing damage are less than perfect, from the biopsy on down. I admire your tenacity and perseverence in treading unclear waters, and best wishes for continued improvement.
You used to do Zhang herbs and you have said they might have helped you. Now you say they are a fraud based on no evidence whatsoever. I take them because my enzymes were in the 150-200 range before I started taking them; since then my enzymes have been normal ever since.
You used to idolize HR and you have said that you still have his email address. You have said that as recently as a month ago. Now you say he is a fraud, based on nothing more than your emotional state. You should look up the qualifications of the man that you so blithely bad-rap - one of the top hepatologists in the world and one of the most respected authorities in medical science. If you notice, he does not post here anymore. MedHelp is a much dumber place because of that. I would rather take HR's word on any subject in the universe over anything you ever had to say. In fact, I'm pretty sure my medical background and training is a lot more rigorous than any training you might have had - I have a four year degree in zoology and a four year degree in clinical lab sciences. What are your credentials on anything?
Just because you achieved SVR by SOC does not mean you are a genius. In fact you could be a bigger fool than you were when you did Zhang herbs, because you became more closed-minded after your success.
The fact is that fibroscan does not correlate well with fibrosis staging by biopsy in the middle ranges. It most certainly correlates with other scans on the same machine, by the same operator, over a period of time.
You're asking the question that's in my mind as well. HR is a fellow who's advice on supplements has been respected and followed for some time, so now he's taking that expertise and developing supplements or involved in their development, whichever it is. Knowing the source, the trust in them is a little higher and more reliable then other things out on the market, you would think. It's hard enough sifting through all the information to know what is and is not okay and here is a line of products that someone with known and trusted expertise has a connection with. Certainly better than someone with no or questionable expertise. If Dr. Dieterich did the same, would we feel more comfortable using something endorsed by Dr. Dieterich? I sure would. I can't see that we would we suddenly suspect his professionalism and accuse him of fudging biopsy results to sell products. So what gives here when it comes to HR ?
mhundall, first let's get something straight. I NEVER did zhangs herbs. I put him in the same category as Lloyd Wright...BOGUS. I would be very scared to take a chance with herbs from China.
And you are totally wrong about me bad mouthing HR. If you read my previous post I say I have the utmost respect for HR and what he has done on MH in the past and what he has done in his profession in regards to Hepatitis. The man is probably one of the most knowledgeable people when it comes to Hepatitis. If I lived in Cal I would be in close contact with him and would want him as my doctor.
Hey mhundall I don't want to make this personal. I truly wish you the best and hope you SVR someday.
Willy, I agree that posting HR's first name and last initial was wrong. I was trying to prove to mhundall that I knew who HR was. Someone else posted the whole name. I have asked MH to remove my posts. What they want to do with the other posts / thread is up to them.
In the interest of clarity, all of the people on HepTech's advisory committee, including HR, are paid consultants and not stakeholders. He, along with Dr. Lorne Terrell (google his credentials), are committed to research. HepTech is probably the only nutraceutical company out there doing the right thing, by doing clinical trials and pilot studies on the products they manufacture. They are also active in doing hep c research that is not directly associated with their products at the University of Alberta in Canada.
Now you're catching my interest. There is alot of work going on at the University of Alberta and they managed to snag a top researcher in the field to come to Canada and to this university, namely Michael Houghton, PhD, who now holds the Canada Excellence Research Chair in Virology at U of A. I was pretty excited at that appointment...being Canadian and all. This is the same team that published their findings that Hep C damages brain cells as posted by MikeSimon orginally.
Houghton, who takes his post June 1, will be part of the newly announced Li Ka Shing Institute of Virology, established just last month through a gift of $28 million from the Li Ka Shing (Canada) Foundation and a $52.2 million investment by the Government of Alberta. He was part of the team that discovered the hepatitis C virus in the 1980s. He will be working with colleagues to develop a vaccine for hepatitis C, develop new treatments for patients already infected, and study new viruses that cause disease. Houghton will be part of the Faculty of Medicine & Dentistry.
Google Dr. Lorne Terrell, of the U of A. Not a stiff himself:
D. Lorne Tyrrell, OC, MD, PhD, AOE is a Professor of Medicine, Biochemistry, and Medical Microbiology and Immunology, and the Director of the Glaxo Heritage Research Institute, University of Alberta. He was the Dean, Faculty of Medicine and Dentistry, at the University of Alberta (1994-2004). He received his Doctor of Medicine with Distinction from the University of Alberta and Ph.D. from Queen’s University in Ontario. Dr. Tyrrell was recognized for, among other things, his work on hepatitis B when he was selected to receive Canada’s highest civilian honor, the Order of Canada.
the list I posted above was actually from a member by the name of Gauf. he took some of HR's supplements and put a list together. This list was from 2008 and not 100% accurate on what is being suggested today.
Thank you again. That's also good stuff. Order of Canada is quite an honour. There is another lab doing similar kinds of work to HepaTech in Guelph, Ontario (up the highway a bit from me) and their focus also is to provide the scientific framework to test and evaluate products such as supplements to ensure they can back up the claims they make about their products. Canada recently changed their laws and supplement manufacturers have to follow stringent guidelines now and have proof that their products deliver what they claim - I believe they have a deadline before that kicks in and they're scrambling to get the required proof in place. These kinds of labs are the ones that independently do the clinical testing to ensure their products are what they claim to be, by virtue of also doing cllinical trials, etc.
I'm 100% in favour of that approach. Imagine us having supplements that have had clinical trials and independent testing done on them. That's going to be great for the consumer.
In the interest of clarity, all of the people on HepTech's advisory committee, including HR, are paid consultants and not stakeholders. He, along with Dr. Lorne Terrell (google his credentials), are committed to research. HepTech is probably the only nutraceutical company out there doing the right thing, by doing clinical trials and pilot studies on the products they manufacture."
In the interest of clarity, none of this was ever disclosed until we did some digging and figured it all out on our own. 1+1+1+1+1=5 it was just that simple. But then the thread was deleted if you remember......too much powerful information in it when you have someone paid supporting a forum I'd imagine.
In the end it's paid consultants making money buy selling a product or two (supplements and fibroscans) to an unsuspecting public who thinks that someone is trying to "help them out' by sharing information.
Not the case whatsoever. It's all about the $$$$$$$$$$. very tricky.
NYgirl, You are too free with your accusations. You are often admitting to not being well versed in science. I am not either, and I know that. You know what you know but it is a tiny, insignificant puff of wind compared to HR. I have no idea why you have decided to go down this damaging road but I wish you would be honest with yourself and rethink it. I do respect the work you put in to supporting people on TX but you are seriously misjuging a person that has earned respect.
I am glad that you clarified that list as Gauf's not HR's. Gauf's list does need some updating such as R-ALA being superior to ALA and I don't think HR ever said anything about Salmon oil, just fish oil. Salmon oil was just Gauf's pick. I would have to go back and look but I don't recall flax oil being on his list either. Foofighter had a good list at one time. She might still have it. TravelMom also had a good list which she used for her daughter. I think the availability of R-ALA is rather recent. Other than the format of many posts, I am not aware of HR ever handing out lists. You had to go to a great deal of work to understand and pick out a protocol from his posts.
I kept thinking last night that I don't remember you being like this in the past. I haven't had any personal dealings with you but I have read your posts for a long time and I don't recall this being your past style. You used to seem nicer but I would have to question your "respect" for HR . I respect him and would never speak of him as you have. Can't you go back to the nicer version of you? I think I would remember if you had always been this way.
Trinity, I know you are smart and in a similar boat as us after being a non responder. I think it is just in your nature to enjoy a good fight. I don't, I hate it. I just care about others like us and feel so grateful to have been here at just the right time to read HR's posts. I could most definitely be a widow by now. Our situation was like a runaway train getting ready to crash when HR took the time from his lofty studies to look in to what the patients real life experiences were. I know I picture him as a saint and to me, he pretty much is. I know the world needs you scrappers but I wish you would reconsider this particular battle.
I have worked last night and need some sleep. I hope that some peace can be found and the people with no recourse other than supplements can be supported also.
Joe doesn't seem to have any auto immunities from all the interferon he has had and will try again with Teleprevir when and if the chance is given . I am all for SVR!
Consultants are paid to be consultants. They are subject matter experts and are paid for what they know. People consult with them. Many many products on the market have medical consultants who provide their expertise. Where is the big honking dirty conspiracy here?
Are people upset because HR doesn't post here anymore as if he owes us all something? That makes him a money grubber just looking to line his pockets? Dr. Dieterich doesn't post here anymore either. We were lucky to have both of them while we had them. If they feel their time is better spent elsewhere and can do more good than answering questions on this forum, then we wish them well and perhaps they do far more greater good doing what they're doing.
HR's expertise is the kind of expertise we hope supplement makers listen to. I really really don't understand what the big deal is. Companies consult with experts, he's an expert. Good for US that they consult with him and not some others that I'm sure people would be quick to come up with, yes???
It's your personal choice what you choose to believe or not however there are members with a great deal of info on what the behind the scenes information is with this. but we aren't going to post it all up anymore because as said 100000x before good luck and adios. What you waste your money on is your business.
And yes I am free with my opinions perhaps because I know things you dont but am tired of wasting my breath. Ignorance is bliss I suppose.
Opinions are one thing but casting dark shadows on a persons character and implying all kinds of mysterious accusations is another. The Book that I know you have in the past confessed to believe in says some pretty ominous things about gossip and slander. What if you aren't right about this? I think I know what you are implying but you are placing the blame on the wrong person.
HR doesn't need my puny defense but the damage is in scaring off those that badly need the information he offered. I wouldn't have to say these things publicly but you are publicly accusing.
We are all very vulnerable to false witness but I don't think you want to be guilty of that. I think you are a good person who is just a little off track on this one subject. If we dig hard enough, we can find something wrong with every human being can't we? I know I've sure got some faults. Staying on the computer when I should be sleeping or working is one of my biggies!
I wish you well,
You have your convictions and we have ours and no good book is going to change that.
Many things are said on this site that are scary to those in need of information so as is often seen posted here they should take the info they want or need and throw the rest out.
Joe's current P.A. for a well known, very legitimate Dr. didn't have anything negative to say about what Joe is taking. She was familiar with it and said nothing to discourage him. The other gastro that did his last banding just shook his head and said that the improvement in his varicies was not at all what he expected. He was put to sleep for another banding but when he saw the dramatic improvement, he didn't do anymore banding at all. He told Joe he didn't have to be checked again for a year. He knows nothing about supplements but he knows varicies and he said the improvement was not what he expected to see.
I can't know with any certainty why he feels better and his condition has improved, but if you look at the normal course for cirrhotics, it is unexpected. How can you know it isn't the supplements that helped? If HR says they have a chance of helping and you say they are just a big waste, who should we listen to? How could you possibly know if they help or not. Now this is definitely just your opinion which is fine.
I had two huge esophageal bleeds due to varices. After the first one my vessels were chemically sclerosed and the bleeding stopped and I was discharged two days after with no follow-up care(which was almost certainly medical malpractice).
A couple of months later I bled out again and once again I lost 4 units of blood. My vessels were sclerosed and the procedure was repeated every two weeks for a total of 6 treatments. That was in March of 1995. I never bled out or had any remarkable distension of my esophageal vessels for over 5 years. I was transplanted in June 2000 so that was the end of the varices. The point is I had no varices problems after those 6 treatments and I didn't take any supplements at all - none.
I am not saying that I know what impact the supplements are having on Joe but I do know that good things can and do happen in the absence of supplements. But, that doesn't mean I can say that the reason I didn't have any further problems was because I DIDN'T take any supplements.
Having said that if I were Joe I would probably keep taking them because why change anything when it's going well.
Aren't we all adults capable of making decisions on what path our health care should take?
Personally, I found HR's posts informative though his list of suggested supplements was too huge for me. But he should be allowed to have his say.
And if mhudnall's liver has improved, of course sharing it here will be helpful to some if not to all.
If only there were a safe, cure that worked for everyone combating HCV, we wouldn't need options, but there isn't.
You sure have had some close shaves. I'm glad you made it through them all.
Joe never had a bleed for which I'm glad. Besides being very life threatening, I always worried for our kids at home to see something that traumatic happen to their dad. It isn't like he is cured at this point and I don't know what we will face in the future. For today, we are enjoying the calm.
Glad your around to tell your story,
it is wonderful to hear that Joe is well enough to build a chicken coop. i love chickens - they are delicious!
i have used most of HRs recommended supplements over the past 3 years. - though not all at the same time. my mouth is not big enough! three years ago the radiologist wrote that my spleen was 15.5cm and the GI doc said it was easy to palpate. Now the speen is about 13cm and just today the same Gi doc said that he did not think it was enlarged. i still have high enzymes and platelets are around 120. Like Joe i also have much more energy since taking the supplements.
when you do a search on pubmed for glutathione and hepatitis c you come up with something like 600 articles. many of these peer reviewed articles state that glutathione is below normal in hepatitis c patients. as you probably know many of HR's recommendations are designed to raise increase glutathione.
That is great!
Joe's latest scan showed his spleen is still enlarged but who knows, maybe next time that too will improve. I'm glad you have been feeling better and having more energy. That in itself is worth a lot. Life won't just stop for you because you feel bad. HCV is impossible to explain to others and if you look OK, they think you must be faking. :>) Well, Joe was so sick on TX, he looked horrible and people could at least tell that something was wrong. He is beginning to look un-sick now. He is still building stamina.
I only have vague understandings of glutathione but at least I know it is good. :>) I knew my life was too short to totally study the deep science of it all, besides I had a toddler wreaking havoc while I was on the computer just trying to figure out the bottom line...what do I do to save my husband.
Joe has had some advantages in having a supplement researcher, purchaser, and organizer...me. All he has to do is swallow...as you know, that is a lot of swallowing!
I wish you well,
IS IT STILL JUSTIFIED TO CONSIDER LIVER BIOPSY AS THE GOLD STANDARD?
in italy this thing is not big news among researchers and most expert doctors from a couple of years and fibroscans are availabe in every region free by healthcare or in private hospitals.
i had 2 biopsies, my mother 2, my sister one: me and my mother we had one wrong because it was seeing much less damage.
of course if fibroscan is not available everywhere like in europe biopsy is still required to measure fibrosis but since 2005 we are not using them anymore for fibrosis, you should push your helthcare for updated labs/machines
of coruse ultrasound confirmed fibroscan 100% with micornodular cirrhosis with nodules <3mm and one focal liver lesion 6mm
in july fibroscan 13.9kpa, cirrhosis from micronodular to macronodular, liver lesion 6mm disappered
october fibroscan 9kpa, very fast ultrasound no regenerating nodules anymore but full accurate ultrasound will be done in december (they use ultrasound that detects 1mm nodules) to see if also liver structure and all regenerating nodules are back to normal
i am followed by an international research center (brunetto pisa), they study hbv not hcv, they use biopsy to measure hbv virus antigens not for fibrosis
antiviral entecavir can only do 3,4kpa by 12months and cirrhosis regression by 3 years according to trials, every liver can have different regeneration capability but antioxidants helped for sure in my case, regenration was too fast
" you should push your helthcare for updated labs/machines"
I'd much rather push our healthcare and the FDA to release the protease inhibitors that help cure hepatitis C than to install fibroscan machines on every corner. You know stefano, I'm glad you have fibroscan machines over there in Italy and you find them more useful and accurate than biopsy. However, I'm very happy with the way our healthcare system takes care of me and there are millions of other people over here in the good old USA that feel the same way.
I'm a late stage 3 and having my second biopsy in November. I also have PCT so I'm one of those that needs biopsy. I choose biopsy and so does my hepatologist.
You choose fibroscan and we're both comfortable with our decison. That's the way it works.
sorry trinity, you must know other healthcare systems to judge, in europe everything is totally free from drugs to blood checks whenever you like to ultrasound and fibroscans at least italy/france/spain
as concerns hbv us, canada and uk are a century older than china not europe, even blood test for hbv quantification are old and useless, at least for those with hbv is same level as africa
i wish you can get protease inibitors, in italy both lambda and protease inibitors are available free at the research centers.
the only bad thing is US is very advanced with selling drugs and studying new drugs for business but the rest is a disaster
i ended in your community because looking for interferon lambda sources, producer has made it available for hcv only so even in italy it is available for hcv only and not on market for off label use.
Good to hear that you've found a program that is helping you whether it's drugs or supplements it doesn't really matter if it works for you then that's great and definitely worth talking about. That said I have a question for you. How do you know that it's not just the low dose naltrexone that's helping you and the supplements you're taking are not doing anything at all? I'm curious because I had taken naltrexone years ago and I know it helps with other health issues as well and is considered a cure-all type drug by some ppl for various reasons. Mainly b/c it's used for a large spectrum of health issues which have no relation to each other. I was also part of this forum when HR used to visit and share his wealth of information in the supplement world and it was much appreciated and part of what made this forum what it is today. I appreciate any and all responses.
"It's your personal choice what you choose to believe or not however there are members with a great deal of info on what the behind the scenes information is with this. but we aren't going to post it all up anymore because as said 100000x before good luck and adios. What you waste your money on is your business.
And yes I am free with my opinions perhaps because I know things you dont but am tired of wasting my breath. Ignorance is bliss I suppose. "
Ignorance? You've got people asking for details. I don't see where you find that people are choosing ignorance. You're choosing to hold back information while at the same time making accusations without saying what you're basing that on.
You referred to a thread that was pulled and personally, I didn't read anything on that thread or have any knowledge of it. If you read upwards in this thread and as has been said many times before, people want to make up their own minds and want to hear all different sides. They don't want their opinions formed FOR them. You don't mind impugning a man's character but when you're asked questions and asked for information you fall back on "I know things you don't" as if that should be enough. That's like reading a study and posting your opinion on what people should do without posting the study and then telling people if they don't listen to you that's their own problem. I really don't know anyone's word here who carries that much weight that people should just do everything they say because they say so.
You've got a whole lot of folks in this thread who are upset with the accusations being made and you fall back on things you know behind the scenes but you're not willing to put it out there for people to read. Then why make the accusations in the first place? If you and others are going to attack a man's character and name him and declare that he's only interested in the money and imply that his fibroscans are suspect because of his connections, then I would think you and others should be posting your data and allow us to make up our own minds.
I note that several people who have been critical of HR or Mike H have no "skin in the game". That is, they are SVR. There are many people who cannot treat and have no other FDA approved methods of treatment. Frankly, it is not the FDA's business to find alternative methods of either treating or damage reduction. This was one area in which HR was, in the past very helpful to members here.
As mentioned, several past TX failures were able to treat and succeed with HR's help.
HR also was the first I was aware of that mentioned the use of Alinia. Several people have treated and succeeded with "non-approved" forms of TX using that as well.
People like Joe and Evangeline have been helped, and potentially more people who could also benefit could be helped. I note that most of the critics have no medical credentials or training. Where lies their expertise in deciding what should be allowed for discussion here?
For many of the HCV infected it is just a question of staying a little bit healthier until better forms of TX arrive. We all know they are coming. I think the heart of this thread is about possibly providing some proof that these things could help. At worst, it could prove that they don't work, at least in Mike H's case. But shouldn't people be able to post without being attacked, chided, stalked, harassed, mocked, or otherwise dismissed? It happens nearly every time that MikeH posts.
I'm appalled that HR's name was printed and that his reputation sullied. I think this forum should be used to help people, not trash people.
So you know everything I eat and drink everyday and you know my exercise program, my sleep patterns, my weight and all my other health issues and can announce that my protocol is bad that having a biopsy in November is a bad attitude? Please, you know nothing.
I'm not the one who can't treat, you are. I'm not the one who has find alternatives, you are. I'm not the one who is claiming my 72 weeks of treatment reversed fibrosis but you're claiming your supplements did. My biopsy will tell me critical information about my liver health only biopsy can reveal and I might just be pleasantly surprised with the staging of my liver as well. Yes, I'm quite comfortable in my own skin and alway will be. But what do I know. I'm just an old coot who likes to argue and certainly not a member of the MH undergound network.
Here's an interesting read for you.
Abstract and Introduction
Background Interquartile range/median value (IQR/M) of liver stiffness measurement (LSM) is a factor in chronic hepatitis C (CHC) leading to over estimation of fibrosis by Fibroscan. Aim To investigate factors that affect the accuracy of LSM in chronic
hepatitis B (CHB). Methods One hundred and ninety-nine patients were enrolled. Only
procedures yielding ≥10 valid measurements were considered reliable. Liver fibrosis was evaluated using the Batts and Ludwig system. Liver biopsy (LB) specimens <15 mm were considered ineligible. Results The mean age (142 men and 57 women) was 40.1 years. A significant discordance (discordance of at least two stages between LB
and LSM) was identified in 38 (19.1%) and 47 (23.6%) patients respectively, according to Marcellin et al. and Chan et al.'s cutoff values. In multivariate analyses, BMI and fibrosis stage (F0–2 vs. F3– 4) were identified as independent predictors for significant
discordance (P = 0.040; hazard ratio [HR], 1.126; 95% confidence interval [CI], 1.005–1.261 and P = 0.036; HR, 0.450; 95% CI, 0.213– 0.949 respectively) with Marcellin et al.'s cutoffs, whereas fibrosis stage was the only independent predictor (P = 0.004; HR, 0.300; 95% CI, 0.131–0.685) with Chan's cutoffs. Conclusions Success rate and IQR/M were not predictive factors of the accuracy for diagnosing liver fibrosis by Fibroscan in CHB. Fibrosis stage (F0-2) was the only factor to predict significant discordance
between LB and LSM....
The entire article is at: http://www.medscape.com/viewarticle/729797?src=mp&spon=3&uac=39980BG
I have requests asking us to keep this thread up. I would love to, but the personal stuff can't continue. If this is truly a debate on one treatment regimen vs another, there would be no need for personal anything. If it continues, the thread will have to come down.
Lot's of what if's in your post so let's play the what if game.
What if those read your advice, take the supplements you recommend and still end up cirrhotic anyway? What do they do then? Continue to take your advice? Can you claim with absolute certainty they wont? Nope, you can't and never will be able to.
Sorry Will this same subject comes up every three months and then has the same exact outcome each time. There is a lot behind it that you aren't aware of and most of the folks are just looking out for the people who need it and wish them well.
Trin I dont think that post was about hep B or C I thought it was about liver fibrosis and fibroscan inaccuracy anyway - dont think you had anything to apologize for!
I don't think mhudall is claiming anyone who follows his protocal will keep cirrhosis away but soc isn't a guarante either. I don't think any supplement can cure any disease not even the common cold but if it helps with the quality of life until some drug comes along that will help your particular situation then all the info a person can gather is a good thing.
" exactly what he gave to MedHelp members for free, as well as hours and hours of PRO BONO expert advice on a number of hep c subjects. Out of the goodness of his heart. "
Here I am after I promised not to be but...it is the part about the hours and hours of free time HR gave us, out of the goodness of his heart, that has made me really sick from all this. Can you imagine what his time is worth by the hour. He just gave it away for months on end because he cared enough for HCV patients to do so. I feel it more personally than some because it was his advice that pulled us out of the pit. You pretty much love the hand that reaches down to pull you out.
I'll likely comment no more further in an effort to save the thread as well.
.....but first...... a story, a pretty much true story, but I'll change the names a little and I may have the story a little bit incorrect, but the jist is correct.
Quite a few years back there was a local football coach...... I'll call him Hayden Fox and not use his real name. He was a character, an excellent coach and IMHO, a great and wise human being as well.
One Saturday during the football game he kept the first string QB on the bench, Something had gone on in the last game or the past week and Hayden was going to let the boy sit and think about it.
First quarter.... bench.
Second quarter..... bench.
third quarter....and everyone is starting to ask themselves; what is going on? It's late in the season, the team needs the star quarterback and almost everybody wants the kid in the game.
Everybody it seems...... but Hayden.
Third quarter...... bench.
Finally....in the 4th quarter....Hayden signals the kid to go in. : )
But now....the QB says no. He folds his arms and watches the game end from the bench.
There was a hell of an uproar about that. I don't even remember who won or lost the game. The issue became about the QB disrespecting the Coach and refusing to go into the game.
I think that it may have been the Monday morning press conference when the issue was finally addressed. One of the first, if not the first questions was to Hayden about whether he would discipline the kids, sideline him, kick him from the team.
He said something to the effect that quarterbacks are kind of like race horses; spirited, headstrong and they live for their sport.
He said of the quarterbacks actions; The kid wanted to play so bad that in the first 3 quarters that he just got it in his head that he'd show me.
(Hayden laughing )"If he (the quarterback) didn't care, I wouldn't *want* him."
To the best of my recollection, the season continued relatively smoothly.
I bring this up as a means of explaining the strength of peoples conviction. I believe that people believe in what they are doing, that a lot of it is based on them caring. I only ask...... understand that the people on the other side of the equation also care and believe.
Anyway..... enough said. Maybe it doesn't apply to this situation, but if nothing else, it's a good story that happens to be true.
People post here all the time about what they're taking for treatment drugs as well. We all post our protocol and the results in the hopes that it will help someone else or that perhaps there is something to be learned by sharing and taking in feedback from the collective wisdom and experience here. Should we all stop posting whether we took Alinia and whether we double-dosed interferon on a 2nd go round on treatment or whether we're doing a lead-in with ribavirin? Are we responsible for the outcome for someone else if we post our own treatment protocol? How is that any different than someone who CANNOT treat posting what their supplement regimen is?
I don't see Mhudnall telling people they should do as he does. He's simply posting his protocol. For folks who can't treat, they should be able to share what they're doing to inhibit fibrosis and keep things under control. For folks who are WAITING to treat until the new PI's come out, they might benefit if people share what is working for them so that they can decide for themselves if they want to try it and see if it works for them.
If someone posts they used Alinia and they made it to SVR, does it fall on their head if someone else uses Alinia and treatment does not work for them?
We all share information here and should be able to in our respective situations and it helps who it helps. Not every thread or post helps or helped me but a number do and did. I sure would have hated it if someone else got to decide what I should be reading. Once more, I'll say it again .... it's coming through loud and clear that we're all adults here and we want to be able to read all the information and decide for ourselves rather than have other folks on the forum censor it for us. Nobody here appointed anyone else to do our thinking for us so you can safely step back and simply post information, post feedback when asked if you want to and we'll do our own thinking.
"Trinity - you are F3-F4. So fibroscan unquestionably would be predictive for you. But you would rather rely on your protocol of bad diet/bad attitude with a biopsy every five years. You prioritize your money over your health, and that's your call. But it is far from prudent or smart, IMHO. You are waiting for the new tx - but the further you go into cirrhosis, the less your chances of success.
Why should anyone take your advice?"
What if those read your advice, take the supplements you recommend and still end up cirrhotic anyway? What do they do then? Continue to take your advice? Can you claim with absolute certainty they wont? Nope, you can't and never will be able to. "
I never mentioned my diet, my protocol, my lifestyle or gave any advice but mhudnall has me pissing away my money, eating badly and moving right into to cirrhosis. My answers followed his accusations so you may want to a little more thoroughly.
Why don't you just let it go Trish. Everyone else has.
Soooooo, what happens to the new person like I was at one time, that reads some of the alternatives that "work". Will they not treat and count on sustaining their life with alternatives?
The fibroscan is not available most place so what if they forgo a biopsy while waiting for the fibroscan to be available locally and unbeknown st to them they are extremely cirrhotic and should not have waited?
Seriously some people looking for the "easy out" will think that is all there is to it.
Fibroscan is not available in most places in the USA because it is not approved by the FDA and therefore............the only people who can do it are like the people like HR and Hepatitis Technologies who make the thing and coincedentally also make the magic supplements.
That is my understanding of why you would need to go to LA for example because you have to find someone who is willing to do something not yet approved here in the States for you.
As it turns out, I believe that in one of Mike's earlier posts I recommended that he get a fibrosure (a blood test). There was a bit of discussion about fibrosure, fibroscan, and biopsy. Each type of test has it's own strong points. The best of all possible worlds is to get all three to get a fair assessment of the liver's condition. I'm aware of some people who have had sharp changes or jumps in liver damage which could be attributed to the specificity of the area of the liver where the biopsy sample was pulled.
I have also read a few accounts where using a fibroscan different areas and lobes had differing amounts of damage.
I don't know how many people have gotten the scans at medhelp, but some people like Bali travel and they can easily get scans. Others have gone to a US source to get theirs. I myself missed out on getting mine at Shands when I got my biopsy. If they run another set of trials which involve a fibroscan I may consider trying again.
The beauty of the fibtrocsan or fibrosure test is that they are non-invasive, very safe and so they can be done frequently so as to establish a baseline, or average. There are few people who would consider getting a biopsy twice a year but it might be a simple and economical matter to do so with a fibrosure blood test.
For what it's worth....my fibrosure in 2005 indicated a stage 1, threshold 2. My biopsy in 2008 indicated 1/6 Ishak.
To my way of thinking more information is always better than less information. Discussion of such in the forums allows a better understanding of the issues involved.
A trial for me wasn't also readily available but it didn't keep me from getting into one.
Because something is not approved in the us doesn't make it invalid. I don't really know much about the fibroscan, but the protease inhibitor boceprevir is also not approved in the us currently but I feel lucky to be in a trial where I am treating with it.
It's unfortunate if people come on a forum and believe whatever they hear, but there are also a lot of uniformed doctors treating people with soc that don't have a clue about tx, using rescue drugs instead of reducing medication, when to check vl and other blood values, how long to treat, when to stop tx.
I don't get the impression that most of the supplement supporters are saying that people shouldn't treat with soc or that the supplements cure the disease, or that the supplements and soc are mutually exclusive.
If I can't cure with the drugs this time, I will try again eventually. I will also look into and educate myself about alternatives that might slow down my disease progression even slightly. If I waste my money so be it. I know I will drink coffee and take milk thistle which most hepatologists seem to believe has some validity. I don't take any supplements besides vitamin d and coffee while treating because I don't want to chance interrupting the process.
There are many times people come on the forum to exploit others and sell things to desperate people, but we have to be able to decimate those people from those who are offering something that might be worth hearing.
If you have been involved with the medical community for any length of time you realize that you must learn to educate and advocate for yourself, always ask questions and not blindly believe even the most respected physician or anyone else on the forum or off that is giving one advice and suggestions.
"..the only people who can do it are like the people like HR and Hepatitis Technologies who make the thing and coincedentally also make the magic supplements."
Deb, Fibroscan is produced in Europe by Echosens, not made by either HR or Hepatitis Technologies.
Fibroscan is used in Europe and has seen discussion at the liver conferences, EASL and AASLD. It may not have the same degree of accuracy as a biopsy but it is still a valid tool for assessment of liver staging. IMHO.
"Soooooo, what happens to the new person like I was at one time, that reads some of the alternatives that "work". Will they not treat and count on sustaining their life with alternatives?"
And that line of thinking is the motivation for the attack by people on this board against any and all supplements. For those people, the cynicism about efficacy is largely the alibi; the emotional need to push for treatment is the true motivation.
HR's protocol is an augmentation for tx, not a replacement. HR is all for tx. So is HepTech. Treatment is the only cure for hep c - no one has ever said otherwise. The studies have shown that supplementation of PPC while treating greatly increases chances of SVR. Nothing is "either or". In my opinion, if you are not treating you should be protecting yourself - especially if you have failed tx. If supplements achieve the result of preventing or slowing fibrosis progression, it is illogical to think that is a bad thing.
Biopsy is only recommended once every five years, I believe. A lot of fibrogenesis can happen in that time. If you doubt the accuracy of fibroscan, then you should do it in conjunction with a fibrosure blood test. The combination has a greatly increased predictive value over one or the other. But a fibroscan alone is highly predictive for the presence or absence of cirrhosis. For those of us in F3, that is no small thing. If you had you last biopsy 3-4 years ago, you have no clue what your current fibrosis staging is, and if you are going to wait another 2 years for your next one, you are completely in the dark about what you staging is..
Cocksparrow achieved SVR on his third try. He credits HR's protocol for making that happen. He did the protocol all though tx, I believe.
Many people are waiting for the new treatment options. However, the further your fibrosis progression, the less your chances of achieving SVR. Anything you can do to halt or decrease fibrogenesis while you wait has enormous value for your tx success.
Biopsy is recommended every 3 - 5 years and I would think it prudent if initial biopsy shows advanced fibrosis then go for the 3 years like I am. Fibroscan cannot detect iron accumulation in the liver, something that effects many people with hepc.
As I indicated before, I make no claim 72 weeks of treatment has reversed my fibrosis or kept it from advancing but then I may be surprised. Or perhaps my initial biopsy done at the Mayo was interpreted incorrectly just as fibroscan results vary and the fibrosis was only 2-3.
I have never made any claims supplements halt or decrease fibrogenesis but you have so it is in the best interest of anyone who is new that they know there is no established peer reviewed studies to support supplements WILL INDEED halt or decrease fibrogenesis.
If you're asking we use your results as a model my answer to that is I would rather not.
Interesting that it is a French company with heavy leanings to Germany, Spain and China to reach out to all their patients. With 52 associates worldwide that can't mean there are too many locations here in the US are there?
Hepatitis Technologies isn't heavily vested in fibroscan? I would have sworn I read it right on their website along with a quote "FibroScan awaits US FDA approval at this point in time Jan 2010." or something just like that. So if you would like to consider it a trial type option that makes perfect sense to me.
Denise's question who can actually perform one of these procedures - well I've never heard of anyone ever getting one here in the USA except for out in LA (and Canada I'd imagine which is north America at least). Interesting that it is a French company with heavy leanings to Germany, Spain and China to reach out to all their patients. With 52 associates worldwide that can't mean there are too many locations here in the US are there?
Now you have me curious to know where else you can get one. I'd actually like to see if my insurance company would pay for it then I could do biopsy every few years and this in between (since I'm SVR there isn't as much need for me to constantly biopsy really). If it lined up in any way to whatever my biopsy will say it could be a good idea for those are not at risk of the virus damaging their liver any longer since it wouldn't be as crucial to be exactly correct but give a good ballpark in which to swing away.
There are a lot of studies on substances that show antifibrotic activities. There are also many studies that show ability to reduce NF-kappaB activation, which is the trigger for fibrogenesis. Dr. CS Lieber's work (human clinical trials) on PPCs have shown fibrosis regression in alcoholics with cirrhosis.
The only thing missing are clinical studies involving supplements specifically targeting fibrogenesis in hepatitis c patients. That is likely to change next year when Hep Tech presents their human clinical trials at next year's AASLD meeting.
When that happens it will be a good thing, not a bad thing.
With the exception of PPC, HR didn't think the anti-inflammatory supplements should be taken during TX. He based it on the fact that not enough research had been done to prove it was OK. He said that there was a possibility of it slowing down the dendretic cell response. I don't know if his approved list for TX would look different today as his recommendations were some years ago and maybe some other research has shown something different.
I will look for the list of what Cocksparrow took. He even had a presentation at a liver conference to present his protocol. Cowriter helped him with the research and I think I will ask her if she would like to put it on the forum or at least give us the list of his on TX protocol.
For those that may not know. Cocksparrow and Cowriter are very bright people that used to be here often. I sure miss their presence. They were blessed with big ol' brains. They also studied HR's posts and they put together a pretty neat plan based on solid research which got Cocksparrow an SVR after several failed attempts. CS WAS a genotype 3.
I remember a lot of his list but not all and I don't want to post anything wrong. I also don't want to post anything they don't want posted.
In the meantime, although I haven't had time to look it up, I believe that HR's approved TX supplements are listed somewhere on Gauf's journal.
If anybody else has it handy, that would be great!
According to the echosen press kit there are 35 units of fibroscan in north america? Is that mostly Canada or how does one find where they can get one here in the continental US? I can't find it but might just be looking in the wrong place.
I don't think you can be charged for a FibroScan since it isn't FDA approved. The few that are in the USA are for trial purposes only and cannot be charged a fee for it. I payed a lot of $$ to see a Hepatologist that has one in his office but not for the scan.
Ah thank you Copyman very good useful info indeed!!!!!!!!!!!!
I think we should all get them then and do our own little study, certainly they would find that useful in getting this approved right?
so much easier on the mind then a biopsy - which even though I know is the best most accurate thing and doens't hurt it's more the time waiting and worrying that somehow this time it will hurt.
Of course, I am sure having to pay for the Hepo (if it was on the scale I paid Dr. J) sure was not chicken feed - hell they should throw one in for free just for the fun of it it cost so much money (but he doesn't take insurance like most of the good ones dont have to).
"With regard to the fibroscan, it can, if the ribcage is not very narrow and the patient not very obese, obain very precise information re the elasticity of the liver, which is excellently correlated to the amount of collagen fibers (fibrosis) that the liver contains. Some fibroscans fail, because the quality of the elastic wave that can be generated is suboptimal due to operater lack of skill, rib deflections causing wave disturbaces, obesity or (rarely) real wound scarring. The problem - and this comment goes to Jim- is that in the " standardized procedure" the judgement of acceptance of a particular individual elastometric shot or picture is left to the machine and its image processing algorithms. If one understands what the essence of the wave speed measurement is as reflected in the details of the individual image, it becommes painfully clear, that the machine algorith sometimes "accepts" individual single measurements that it should have discarded and also that the speed interpolation tha the machine automatically performs and superimposes on the individual image is not infrquently clearly wrong. This normally is weeded out because only the median of 12 measurements is finally used as "the' reflection of the true elasticity and is the only value that determines the final fibrosis judgement. In terms of repetitions of the "shots" or measurement of individual elastic values, the rule is simple: the more you do, the closer you get to the reality. Just like 10 liver biopsies would give you more info than one and 40 will really focus you into what is truly present - sampling error is increasingly reduced and the reality of degree of fibrosis comes into clearer focus the more "fibroshots" you do.. It is practical reasons that limit the " standardized protocol" and it is more a minimum protocol rather than the maximum precision that you can obtain.More mesurements will only reduce the uncertainty window that a particular median will finally represent. Biopsies are only coarsly quantitative in re to fibrosis - hence the "stages". So the more biopsies you would do( if you could, or do a "wedge biopsy", autsch) and if you would (as some French studies did) quantify the fibers with integrated area measurement of the stained fibrous areas and would in parallel do a number of fibroscan shots to the extent that the median now stays rock solid and you have discarded improper waves, then you would come to a very, very close agreement between the two. In the real world, the uncertainties of both methods will combine to widen the window of correlation. It is however easier to narrow the part that stems from the fibroscan due to its noninvasiive nature."
Note: "In the real world, the uncertainties of both methods will combine to widen the window of correlation." In other words, it is the variability of both methods that produces the variation in correlation between the biopsy and the fibroscan in predicting staging. It is much more reliable to compare a fibroscan to a fibroscan than a fibroscan to a biopsy. Same machine, same operator, same area of the liver over a unit of time = correlation.
I was treated out of a research hospital in one of our major centres here that has a well-renowned liver clinic and a number of hepatologists on staff who are among the best in Canada and have collaborated with other hepatologists on studies and publishing papers. They have been using the Fibroscan as a diagnostic tool for some time now, at least since I attained SVR in April 2009. When I started on the clinical drug trial out of that liver centre, there was no Fibroscan there and by the time I was done they had one as that's what my favourite hepatologist and major treating doc tested my liver damage with on my six month post treatment visit. He did 10 passes. I started treatment as Grade 1, Stage 1 and diagnosis at SVR was no discernible liver damage. I know others who are tested with the Fibroscan there as well. That clinic is a little ahead of what gastroenterologists are using with their patients in my part of the world as it's a major liver centre.
It's not usually the case that Canada is ahead of the U.S. in approving treatments or drugs but seems this time we're right up there with Europe and whoever else is using Fibroscan, which is great. Just because the U.S. is taking awhile to get it approved doesn't mean it's not a valid diagnostic tool. It's certainly being used by a number of hepatologists in other countries.
You may remember that there were three places to get a fibroscan in the U.S. that were discussed on the board back in 2008-2009.
This is from memory but one was in Boston with Dr. Afdhal (sp?) and the second may have been in Florida at the University of Miami. (I think FlGuy knew.)
The third, of course, was in California, with HR, for whom I have the highest regard. His extraordinary quality of input was a treasure for so many of us who remember him. I mostly only knew him through the archives but his enduring and generous contribution is there for all to see. (I invite anyone here not familiar with that wonderful and brilliant man to read his archived posts and decide for yourselves.)
The Fibroscans would have all been purchased in Europe and now there may be more available.
I think Dr. Ira Jacobson only has the Fibrosure (a blood test) available at his center.
The Fibroscan is already approved in Canada, as in many other countries (Japan?). I'm willing to bet that it will be approved in the U.S. very soon, maybe even before the protease inhibitors.
It's a very welcome tool, in my opinion but like biopsy, it's best to have a pro do it right. There may not be many (for now) who have that expertise, so that could be a short-term problem after it's approved.
It would appear to me that they are still engaged, or once again engaged in clinical trials of fibroSCAN in the USA. There are quite a few trials right now. This would be a great opportunity to get a biopsy and a fibroscan for baseline and comparison purposes.
So far as a fibroSURE test, I believe that they can routinely be ordered from LabCorp. In my case I had to ask for one. I had to ask the doctor who processed his lab tests, he provided me the name of the local lab, I called and had to ask to speak to the head guy, cause no one at the lab had heard of it. He looked it up and said no problem and told the doctor that all he had to do was to write a prescription for the test. I had my results in days, it was a simple blood draw, and it cost about 300 dollars. My co-pay was only about 25 to 30 dollars if memory serves.
At this point I believe it may be a Fibrosure II. I think they may have tweaked the scoring a little. I think that anyone who considers doing the clinical trials joint fibroscan and biopsy should consider the addition of a fibrosure test. (three forms of evaluation being better than just two, after all. PS.... since a fibrosure is a blood test certain fasting protocols must precede the test)
Ithink Bali had his done at Mount Sinai which is closest to me however after finding out I'd have to pay cash to the hepo since they can't charge for the fibro I am thinking it puts it far out of my reach.
I am curious though to see just how much it would line up as a pre=tx stage 3 would it say I am still stage 3 (I think it's more accurate at late stages) or if it would say I have had any regression. I would of course have to confirm it with a biopsy at this point since I have absolutely no idea.
However I have put it off too long and need to do this. Mostly out of curiousity but in case something else is going on and destroying liver tissue (but with my low enzymes it seems unlikely since they are like 10 and 15).
the link which I provided has a list of various places which are performing various trials of fibroscan. Only the TOP one pertains to HCV (or HBV also) and biopsy. It wasn't clear to me whether the biopsy was free or not.
The involved clinics in the USA are below;
United States, Massachusetts
Boston, Massachusetts, United States, 02215
Contact: Rory Farnan 617-632-1070 ***@****
Principal Investigator: Nezam H Afdhal, M.D.
United States, Missouri
Bruce Bacon M.D. Recruiting
St. Louis, Missouri, United States
Contact: Judy Thompson 314-577-8764
Principal Investigator: Bruce Bacon, M.D.
United States, North Carolina
Duke University Medical Center Recruiting
Durham, North Carolina, United States
Contact: Keyur Patel, M.D.
Principal Investigator: Keyur Patel, M.D.
When there were more trials out there I believe that there were more hospitals engaged; for instance I know that Shands has one.
By accessing the clinical trials list one may also see other hospitals who possess them. In my case since I knew Shands had one all I had to do was ask. In my case something came up and it wasn't possible, but it almost happened.
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