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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.
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.
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.
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
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
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.
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.
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
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
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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