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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.
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.
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.
"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.
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!
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!
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.
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.
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
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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