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New Fibroscan
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.
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Page 7 of 7
979080 tn?1323437239
Hi Stefano,
that`s good to know. I am actually a resident of Italy which allows me to access
the healthcare system.

Ciao Bello !
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408795 tn?1324939275
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.      
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"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.  

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hahaha, it only gets better doesn't it?
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I agree with what Trish wrote.  

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.  

Willy

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http://www.medhelp.org/posts/Hepatitis-Social/Personal-Information/sh...

""That's just simply lowlife guttersnipe behaviour, not internet tracking.  I know someone did similar to me in taking out a fake identity only I do know those behind it.

Put up or shut up back at you.  Definately claming you know the source, insults to your intended but nothing to back it up.  
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Hi fretboard.

To answer your question, When I started 3.0 mg LDN two years ago I had a 1.6 million VL with high enzymes and a very high F3 staging.

Three months later, VL of 58,000 with normal enzymes. But over the course of the next year my VL drifted to 300,000 and my enzymes drifted to 150-200. Still very high F3 staging.

I then switched to 4.5 mg LDN and added Zhang herbs. Still very high F# staging. VL went down to under 3,000 and enzymes back to normal, but still very high F3 staging.

Six months later, fibroscan said very high F3 staging with VL 48,000 and normal enzymes.

Then I started HepTech products. Six months later, F2-F3.

My conclusions are that LDN works on VL. Zhang works on enzymes. HepTech works on fibrosis.

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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
Abstract


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


Trinity

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408795 tn?1324939275
Interesting information for sure and I appreciate the clarification!  thx
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707563 tn?1455827280
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.

Emily
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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.

Trinity
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1225178 tn?1318984204
There is no certainty about anything when dealing with liver disease. Even SOC
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"Conclusions Success rate and IQR/M were not predictive factors of the accuracy for diagnosing liver fibrosis by Fibroscan in CHB."

CHB stand for Chronic Hepatitis B. Sorry, we have hep c.

"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."

If my fibroscan is an "overestimation" then I am really good! That means I could be F1-F2!
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On that note, I am out of here.

I would rather have the thread stand as is then let it be deleted.

I'l post when I get my next labs.

Mike
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I know that, but stefano seems to think we're all in the same boat.

Cheesuz, I'm not the one getting personal here and when it's all said and done who doesn't wish the best for each other.
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BIG PHARMA"S  and the  SUPPLEMENTAL industrys all racing  like mad to come up wiith  the paneca . THey all smell HUGE prfits down the road with a potential customer base of  approx.180,000,000.

And here we are the current  patients arguing with each other!!  Unbeleivable!!
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179856 tn?1333550962
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!
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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.

Just my thoughts
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" 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.

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476246 tn?1418874514
I'm always happy for someone who has good results.

So here is to good results for everyone!!!
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Thanks for that!
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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.

Hayden laughed.

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.

best,
Willy
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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.
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Mhudnall:

"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.

Trinity




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correction:  READ a little more thoroughly.
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Likewise my dear, over and over.  And I posted in response to Mhudnall.  Not too hard to figure that one out.
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419309 tn?1326506891
This thread is titled "New Fibroscan."

I'm finding it a persistent thought that a number of members have asked with real interest about where Fibroscan is available in LA but no one has offered any helpful answers...
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238010 tn?1420409872
Since mhudnall said he's not coming back to this thread, you might try a PM to him to find out where a Fibroscan is available in LA
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475300 tn?1312426726
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.

Denise
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179856 tn?1333550962
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.



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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.

best,
Willy
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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.  


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Deb wrote;
"..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.

Willy
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"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..
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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.
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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.

Trinity
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179856 tn?1333550962
Deb, Fibroscan is produced in Europe by Echosens"

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.

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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.
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179856 tn?1333550962
Sorry seems I cut and pasted a few times and never hit the control X only hit the control C instead.
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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!
Ev
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179856 tn?1333550962
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.
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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.
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179856 tn?1333550962
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).

Now I get it!
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Here is HR on the subject of the fibroscan:

"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."

http://www.medhelp.org/posts/Hepatitis-C/No-Fibroscan---Jim-Help/show/326325

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.
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Thanks to Portann for the link above!
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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.
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Hi Deb,

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.

Good luck.

Susan




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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.

http://clinicaltrials.gov/ct2/results?term=fibroscan

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)

Willy

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179856 tn?1333550962
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).

deb
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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
BIDMC Recruiting
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.

willy
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