Aa
LDN
Is anyone familiar with treatment using LDN? Is this stuff for real?
Not familiar with it, except for what I found here:
http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone
If you scroll down, there are several interesting references to its use for HIV and Multiple Sclerosis.
Have never heard LDN mentioned in association with HCV/CHC. The drugs currently available for treating HCV are, unlike LDN, very expensive and therefore not available to most people in the world with Hepatitis C.
http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone
If you scroll down, there are several interesting references to its use for HIV and Multiple Sclerosis.
Have never heard LDN mentioned in association with HCV/CHC. The drugs currently available for treating HCV are, unlike LDN, very expensive and therefore not available to most people in the world with Hepatitis C.
I know someone doing LDN with very significant drops in viral load. He is also using selenium and other hepatoprotective antioxidants of course (everyone with HCV should do this) but the really significant drops in his VL came after starting LDN. LDN seems to correct the auto-immune aspects of hepatitis and work against the immuno-supressive effects of the virus. Of course you can't do it if you're on methadone like me. But there are other cheap ways of elevating endorphins; not as spectacular as LDN perhaps but effective; cayenne (either eating hot curries, or more likely, dropping capsules of ground cayenne at bedtime) is effective (I can attest 1-2 caps is very good for restless leg syndrome), and the amino acid supplement D/L phenylalanine (DLPA) works, though I haven't tried it yet the science is sound. L-phenylalanine is the essential amino acid in the conserved sequence of all endorphin and enkephalins, and d-phenylalanine inhibits the destruction of endorphins.
Endorphin isn't just a painkiller, it also regulates the immune system, which is one reason why addicts are more likely to become chronic and don't respond as well to Tx. Also, giving morphine after some cancer surgeries significantly increases the rate of relapse (tramadol is safer). So the endorphin-immune link is well-known; also the reason "feel good" psychology - positive visualisation and the like - can actually help with HIV, cancer and HCV.
I will try to get my LDN friend onto this thread.
Endorphin isn't just a painkiller, it also regulates the immune system, which is one reason why addicts are more likely to become chronic and don't respond as well to Tx. Also, giving morphine after some cancer surgeries significantly increases the rate of relapse (tramadol is safer). So the endorphin-immune link is well-known; also the reason "feel good" psychology - positive visualisation and the like - can actually help with HIV, cancer and HCV.
I will try to get my LDN friend onto this thread.
Hi George!
My name is Mike and I am George's friend that takes LDN for hepatitis.
I have had hepatitis c genotype 1a for over 35 years. Five years ago I tried interferon-ribavarin and had to drop out after 12 weeks. Six months after that my viral load reached 7 million.
A year after that I did a 10 week green juice fast that brought my viral load down to 1.6 million. Seven months ago I got on LDN and IV treatments and my viral load was brought down to 58 thousand.
I am going to do my 7 month labs this week and I am hoping for a non-detected.
LDN works by causing an endorphin bloom. Low Dose Naltrexone causes a temporary blockade of 10 percent of your endorphin receptors. After four hours or so the Naltrexone degrades and falls off the receptors. The blockaded cells then respond by up-regulating endorphin production and its release into the bloodstream. The resulting endorphin bloom causes the immune system to activate and optimize.
The optimization of immune function is the reason that LDN works so efficaciously for autoimmune diseases.
For hepatitis c, I believe that LDN works better the healthier the user. The power of the immune system at its starting point is the key to how much further it can go with improvement from LDN.
The IV stuff I do is phosphatidylcholine, glutathione, lipoic acid and Laennec human placenta extract (2x per week). My current strategy is that while my viral load is down, this is a good time to eat up the fibrosis with the phosphatidylcholine and regenerate my liver with the human placenta extract.
I also have a fitness and diet regimen, and I am in excellent condition and health. Quite a contrast from 4-5 years ago when I was doing very poorly!
Everything can be reversed if you enable and empower your system to do what it knows it needs to do.
Nice to meet you all!
Mike H
My name is Mike and I am George's friend that takes LDN for hepatitis.
I have had hepatitis c genotype 1a for over 35 years. Five years ago I tried interferon-ribavarin and had to drop out after 12 weeks. Six months after that my viral load reached 7 million.
A year after that I did a 10 week green juice fast that brought my viral load down to 1.6 million. Seven months ago I got on LDN and IV treatments and my viral load was brought down to 58 thousand.
I am going to do my 7 month labs this week and I am hoping for a non-detected.
LDN works by causing an endorphin bloom. Low Dose Naltrexone causes a temporary blockade of 10 percent of your endorphin receptors. After four hours or so the Naltrexone degrades and falls off the receptors. The blockaded cells then respond by up-regulating endorphin production and its release into the bloodstream. The resulting endorphin bloom causes the immune system to activate and optimize.
The optimization of immune function is the reason that LDN works so efficaciously for autoimmune diseases.
For hepatitis c, I believe that LDN works better the healthier the user. The power of the immune system at its starting point is the key to how much further it can go with improvement from LDN.
The IV stuff I do is phosphatidylcholine, glutathione, lipoic acid and Laennec human placenta extract (2x per week). My current strategy is that while my viral load is down, this is a good time to eat up the fibrosis with the phosphatidylcholine and regenerate my liver with the human placenta extract.
I also have a fitness and diet regimen, and I am in excellent condition and health. Quite a contrast from 4-5 years ago when I was doing very poorly!
Everything can be reversed if you enable and empower your system to do what it knows it needs to do.
Nice to meet you all!
Mike H
Hi Mike,
I wish you the best but I don't think anything will cure HCV except the combo treatment of interferon & ribavirin, or the new drugs in trial right now. The viral load fluctuates on a daily basis so the changes you have most likely are the norm that everyone sees. I do believe in supplements but not that they will totally clear the virus. Best of luck and please let us know how you make out.
I wish you the best but I don't think anything will cure HCV except the combo treatment of interferon & ribavirin, or the new drugs in trial right now. The viral load fluctuates on a daily basis so the changes you have most likely are the norm that everyone sees. I do believe in supplements but not that they will totally clear the virus. Best of luck and please let us know how you make out.
Hi Copyman,
I agree that the virus may not be eradicated, but my goal is to recondition my liver, eliminate fibrosis and inflammation, and restore proper function.
My enzymes are normal and the drop in viral load with LDN was 97% - much greater than normal fluctuation. Also, all my liver functions are all good, many of which were out of range at one point. Examples are platelets and clotting times. Both were out of range and now are in range. In fact all my labs are now in range and I believe that my fibrosis, which at the time of interferon treatment was stage 2 for inflammation and stage 3 for fibrosis have totally reversed.
I'm 55 now; all I'm asking for is another 35 years or so! Five years ago that was a seeming impossibility. Now I consider it in the bag!
But you are right, I might be delusional. However, my experiences tell me that I am much healthier today than after tx. I am actually much healthier than all of my non-ill friends, and that includes liver health.
I regret having tried interferon. It did kick me to the curb however, and I never would have had the discipline to fight the disease without hitting bottom, so it was good for one thing - motivation!
Also, LDN has been shown to increase immune function. I can't think of a reason why enhanced immune function wouldn't be desirable for hep c patients.
Best of luck to you!
Mike H
I agree that the virus may not be eradicated, but my goal is to recondition my liver, eliminate fibrosis and inflammation, and restore proper function.
My enzymes are normal and the drop in viral load with LDN was 97% - much greater than normal fluctuation. Also, all my liver functions are all good, many of which were out of range at one point. Examples are platelets and clotting times. Both were out of range and now are in range. In fact all my labs are now in range and I believe that my fibrosis, which at the time of interferon treatment was stage 2 for inflammation and stage 3 for fibrosis have totally reversed.
I'm 55 now; all I'm asking for is another 35 years or so! Five years ago that was a seeming impossibility. Now I consider it in the bag!
But you are right, I might be delusional. However, my experiences tell me that I am much healthier today than after tx. I am actually much healthier than all of my non-ill friends, and that includes liver health.
I regret having tried interferon. It did kick me to the curb however, and I never would have had the discipline to fight the disease without hitting bottom, so it was good for one thing - motivation!
Also, LDN has been shown to increase immune function. I can't think of a reason why enhanced immune function wouldn't be desirable for hep c patients.
Best of luck to you!
Mike H
That is great, Mike!
I have not gone on LDN nor the ones using IV...no placenta either....but have been doing the others orally plus Milk thistle and have improved greatly.
However i use the precursor to gluthathione which is made into that in the body.
I also use medicinal grade Stevia.
I would like to know where one can get treatments such as yours?
I have known that /iv treatments would be far better. Bet it's expensive though and insurance won't cover that.
I'll check around if you don't reply.
thanks for posting.
I know that certain things really do help significantly. My tests and blood works are proof of this to the amazement of my allopathic doctors.
I would rather live well with this virus than to do more damages from more treatment.
It has made a mess of me but am much better from what i am doing now.
how do you know that the liver fibrosis has reversed? Did you have a biopsy recently? or?
I have improved in every way but liver histology has not changed..but I won't complain about that. it is not worse and have good blood flow when it was sluggish prior to my regiment.
I have not gone on LDN nor the ones using IV...no placenta either....but have been doing the others orally plus Milk thistle and have improved greatly.
However i use the precursor to gluthathione which is made into that in the body.
I also use medicinal grade Stevia.
I would like to know where one can get treatments such as yours?
I have known that /iv treatments would be far better. Bet it's expensive though and insurance won't cover that.
I'll check around if you don't reply.
thanks for posting.
I know that certain things really do help significantly. My tests and blood works are proof of this to the amazement of my allopathic doctors.
I would rather live well with this virus than to do more damages from more treatment.
It has made a mess of me but am much better from what i am doing now.
how do you know that the liver fibrosis has reversed? Did you have a biopsy recently? or?
I have improved in every way but liver histology has not changed..but I won't complain about that. it is not worse and have good blood flow when it was sluggish prior to my regiment.
I have not had a recent biopsy, so my belief that the fibrosis is reversed is empirical based on labs and how I feel. My hormone levels are good - another sign of a healthy liver, and I exercise pretty vigorously. That takes energy that only a healthy liver can give.
But I also work closely with a deep tissue massage therapist - a myotherapist, specifically, that pumps my liver out (of bile) every week. He has felt the tissue constantly for the last five years and we both feel that the texture of the tissue is much better. We look at it in terms of turgidity, pliability, energy, and reactiveness of the organ as a whole to physical stimulation.
I would not do a biopsy because they are dangerous and they do not tell you very much. A biopsy is basically a core sample about a millimeter square in area of your liver tissue. But your liver is huge and has multiple separate lobes. Unless fibrosis occurs in a completely homogenized way throughout the whole organ (highly doubtful), then the biopsy is a very random peek at the problem.
Also my first one almost killed me. It was unauthorized and administered by the physician doing my emergency gallbladderectomy. In all I had to be given five units of blood. Those results spurred me to do interferon. I was fat, out of shape with hep c, a funky liver and a gangrenous gall bladder. I had no energy to do the things that I knew would work better. It was a discipline problem, as I mentioned earlier.
Anyway, the IV's can be done with naturopaths or holistic MDs. You have to get the pricing from them and compare. I would suggest phosphatidylcholine and lipoic acid to start with. Other good ones are glutathione, mega dose vitamin C, and all the B's. Insurance will cover none of it.
I think the best bang for the buck is LDN however. Of all the things I've done, and I have just scratched the surface here, nothing has helped like LDN. Besides the drop in viral load, it relieved systemic inflammation (liver enzymes normalized), but the best thing was that it relieved me psychologically. No anger, and an easy calmness settled in. I didn't know how edgy hep c had made me until it was gone.
Also the endorphins are great, in both workouts and massage. I mean, like really wonderful, in a chi-bomb sort of way.
The biggest thing for histology is phosphatidylcholine. It is fibrinolytic and it is the main consituent of cell membranes, of which there must be a trillions miles of in your liver. It has been shown to be effective in even the worst cases of fibrosis, with the benefits continuing on long past the studies ends. So it eats up the scar tissue and rebuilds healthy cell walls. Lipoc acid protects the healthy cells.
I am glad that you have improved your situation. Hep c is just a race through time with the condition. You can go out fast with bad quality of life or you can go out slow with good to great quality of life. I feel that the better care you take of yourself, then the less impact hep c will have. It is nice that there a great tools like LDN and orthomolecular nutrition, but it really is about empowering your bodies native healing processes to do their job.
Another point is who is to say that exercise and diet cannot be hugely effective in maintaining and/or restoring liver health? That has been a big part of my program, and I believe that the benefits of diet and exercise are vastly underrated. I exercise my core, which means the trunk of my body. I do twists, medicine ball throws, body bridges - all exercises that clean the tissues and fascia around the liver, as well as providing organ massage with every repetition. This is also key to eliminating steatosis (intracellular fat) from the liver - fatty liver correlates with body mass index, which means the fatter you are, the more fat in your liver. This is not true for geno 3 which is a variant that makes the liver cells form their own fats - the virus uses the fats for the envelope of the envelope viruses. But inflammation is a fatty metabolism pathway called the arichidonic acid cycle, and the fats in fatty liver syndrome feed right into inflammation.
Anyway, I ramble. It's always nice to meet someone who has taken responsibility for his program. Nice to talk with you!
Mike H
But I also work closely with a deep tissue massage therapist - a myotherapist, specifically, that pumps my liver out (of bile) every week. He has felt the tissue constantly for the last five years and we both feel that the texture of the tissue is much better. We look at it in terms of turgidity, pliability, energy, and reactiveness of the organ as a whole to physical stimulation.
I would not do a biopsy because they are dangerous and they do not tell you very much. A biopsy is basically a core sample about a millimeter square in area of your liver tissue. But your liver is huge and has multiple separate lobes. Unless fibrosis occurs in a completely homogenized way throughout the whole organ (highly doubtful), then the biopsy is a very random peek at the problem.
Also my first one almost killed me. It was unauthorized and administered by the physician doing my emergency gallbladderectomy. In all I had to be given five units of blood. Those results spurred me to do interferon. I was fat, out of shape with hep c, a funky liver and a gangrenous gall bladder. I had no energy to do the things that I knew would work better. It was a discipline problem, as I mentioned earlier.
Anyway, the IV's can be done with naturopaths or holistic MDs. You have to get the pricing from them and compare. I would suggest phosphatidylcholine and lipoic acid to start with. Other good ones are glutathione, mega dose vitamin C, and all the B's. Insurance will cover none of it.
I think the best bang for the buck is LDN however. Of all the things I've done, and I have just scratched the surface here, nothing has helped like LDN. Besides the drop in viral load, it relieved systemic inflammation (liver enzymes normalized), but the best thing was that it relieved me psychologically. No anger, and an easy calmness settled in. I didn't know how edgy hep c had made me until it was gone.
Also the endorphins are great, in both workouts and massage. I mean, like really wonderful, in a chi-bomb sort of way.
The biggest thing for histology is phosphatidylcholine. It is fibrinolytic and it is the main consituent of cell membranes, of which there must be a trillions miles of in your liver. It has been shown to be effective in even the worst cases of fibrosis, with the benefits continuing on long past the studies ends. So it eats up the scar tissue and rebuilds healthy cell walls. Lipoc acid protects the healthy cells.
I am glad that you have improved your situation. Hep c is just a race through time with the condition. You can go out fast with bad quality of life or you can go out slow with good to great quality of life. I feel that the better care you take of yourself, then the less impact hep c will have. It is nice that there a great tools like LDN and orthomolecular nutrition, but it really is about empowering your bodies native healing processes to do their job.
Another point is who is to say that exercise and diet cannot be hugely effective in maintaining and/or restoring liver health? That has been a big part of my program, and I believe that the benefits of diet and exercise are vastly underrated. I exercise my core, which means the trunk of my body. I do twists, medicine ball throws, body bridges - all exercises that clean the tissues and fascia around the liver, as well as providing organ massage with every repetition. This is also key to eliminating steatosis (intracellular fat) from the liver - fatty liver correlates with body mass index, which means the fatter you are, the more fat in your liver. This is not true for geno 3 which is a variant that makes the liver cells form their own fats - the virus uses the fats for the envelope of the envelope viruses. But inflammation is a fatty metabolism pathway called the arichidonic acid cycle, and the fats in fatty liver syndrome feed right into inflammation.
Anyway, I ramble. It's always nice to meet someone who has taken responsibility for his program. Nice to talk with you!
Mike H
this is starting to sound like a "snake oil" ad for LDN...........we have a member here who is a hepatitis researcher and he has suggested many supplements but never once has he mentioned this. Sorry but I think it is bogus. Glad if it is working for you
Well, LDN has been through phase 1 FDA clinical trials for acute crohn's and phase 2 has been started. In the trials, LDN brought two thirds of the acute crohn's patients to complete remission in 3 weeks. It failed to help only 12% of the patients. Phase 1 trials on multiple sclerosis have also been completed and have shown good results. LDN has been shown to increase circulating endorphin levels, and the endorphin-immune system link has been well-established.
There is also plenty of science behind all the IV nutrients, including phosphatidylcholine. Maybe you should look at the science and decide if it is snake oil for yourself.
In my opinion, the snake oil salesmen are the pharmaceuticals companies, who push nasty stuff like interferon/ribavarin. Just because a therapy doesn't debilitate you doesn't mean that it is not effective, or not science-based.
One more word on LDN. Because the patent ran out and the drug is in the public domain, you won't see a whole lot of research on it. The good thing is that it costs only $30 a month, without insurance. The bad thing is that it will never be promoted or properly funded for study by the drug companies. However, if the drug companies had realized how to use it correctly before the patent ran out it would be on TV ads 24/7.
BTW, probably the best researcher on this site is George D.
Good luck!
Mike H
There is also plenty of science behind all the IV nutrients, including phosphatidylcholine. Maybe you should look at the science and decide if it is snake oil for yourself.
In my opinion, the snake oil salesmen are the pharmaceuticals companies, who push nasty stuff like interferon/ribavarin. Just because a therapy doesn't debilitate you doesn't mean that it is not effective, or not science-based.
One more word on LDN. Because the patent ran out and the drug is in the public domain, you won't see a whole lot of research on it. The good thing is that it costs only $30 a month, without insurance. The bad thing is that it will never be promoted or properly funded for study by the drug companies. However, if the drug companies had realized how to use it correctly before the patent ran out it would be on TV ads 24/7.
BTW, probably the best researcher on this site is George D.
Good luck!
Mike H
In case you missed it this is an HCV forum. Lets stay with the forum topic. Come back with phase 1 study data on HCV then there will be some credibility. Until then stop posting this nonsense here. You may want to talk to Lloyd Wright, he also pushes snake oil "cure". He could show you the technique on how to prey upon the weak that have Hepatitis / liver disease. He is a master on emptying the pockets of many HCV victims with the promise of a cure!
You may be able to convince newbies here but most of the members here are well versed in Hepatitis C and know better then to buy into this. You would be better off visiting other forums that may not have as much knowledge as the members here, and this would give you a better chance of selling the "snake oil"
You may be able to convince newbies here but most of the members here are well versed in Hepatitis C and know better then to buy into this. You would be better off visiting other forums that may not have as much knowledge as the members here, and this would give you a better chance of selling the "snake oil"
So copyman,
I am a non-responder to treatment. The reasons for dropping out at 12 weeks were severe allergic reactions, so even if I was so inclined, I couldn't do more conventional treatment. I also have specific memories of the quite literal shrug of the shoulders from my GE when I stopped the drug. The only course of action, of course is just to grit it out until I qualify for the transplant list. No hope; they are so quick with the hook!
What do you suggest I do, and people like me?
Also, who is going to profit from LDN? That is prima facie ridiculous.
For your information I have two 4-year Bachelors of Science degrees; one in Zoology and the other in Clinical Laboratory Sciences. That means that I am a Medical Technologist, so not only am I trained in clinical diagnostics, I am certified to perform the lab tests that you read on your labs (Medical Technologist, ASCP, NAACLES certified). I am also trained to understand the principles of diagnostic tests, the medical pathologies involved, how to research and to understand what I read. So your snake oil comments are pretty laughable.
LDN is a prescription drug. My doctor prescribed it for me. He also does the orthomolecular nutrition. He agrees with me on all aspects of my program and includes me on all decisions. Just because your doctor is conventional does not make him more scientific than mine. Plus, I would bet that he cannot compare to mine in terms of helping people, especially those who have run out of conventional options.
I've experienced the tender mercies of interferon treatment. I understand everything about it. I think I can do a better job with my new doctor and on my own. Everything in my labs and everything in my life would indicate that is so. And that is based on scientific criteria, not snake oil criteria.
Sorry to interrupt the theme here. I did not know that some hep c topics are taboo here. If you stop insulting me I will go away, I promise!.
Carry on. And good luck to you!
Mike
I am a non-responder to treatment. The reasons for dropping out at 12 weeks were severe allergic reactions, so even if I was so inclined, I couldn't do more conventional treatment. I also have specific memories of the quite literal shrug of the shoulders from my GE when I stopped the drug. The only course of action, of course is just to grit it out until I qualify for the transplant list. No hope; they are so quick with the hook!
What do you suggest I do, and people like me?
Also, who is going to profit from LDN? That is prima facie ridiculous.
For your information I have two 4-year Bachelors of Science degrees; one in Zoology and the other in Clinical Laboratory Sciences. That means that I am a Medical Technologist, so not only am I trained in clinical diagnostics, I am certified to perform the lab tests that you read on your labs (Medical Technologist, ASCP, NAACLES certified). I am also trained to understand the principles of diagnostic tests, the medical pathologies involved, how to research and to understand what I read. So your snake oil comments are pretty laughable.
LDN is a prescription drug. My doctor prescribed it for me. He also does the orthomolecular nutrition. He agrees with me on all aspects of my program and includes me on all decisions. Just because your doctor is conventional does not make him more scientific than mine. Plus, I would bet that he cannot compare to mine in terms of helping people, especially those who have run out of conventional options.
I've experienced the tender mercies of interferon treatment. I understand everything about it. I think I can do a better job with my new doctor and on my own. Everything in my labs and everything in my life would indicate that is so. And that is based on scientific criteria, not snake oil criteria.
Sorry to interrupt the theme here. I did not know that some hep c topics are taboo here. If you stop insulting me I will go away, I promise!.
Carry on. And good luck to you!
Mike
Mike H. gave details about his protocol.( and It doesn't appear that he has forgotten that this is a hcv forum and that he has hcv.)
What's wrong with that?
There's not one 'expert' on this forum nor others....maybe some 'expert' docs on a few......some have read more and remember than others.....some, shockingly do no research on their own...there's a lot of info than when I was dx'd and did the tx...
.we're all supposed to be learning with and from each other as forums should...and we're not always going to agree...but we can discuss not argue..
.of course, there are the sales people and self promoters of their products...including the drug companies.
Interferon and riba were/are used for other ailments like so many other drugs around before it's use for hcv.
That LDN may not help those with hcv at all.....
And it may help.Not cure but help.
It's cheap and you need a script from a doctor to get it. It's a pharmy drug.
There have been a number of 'snake oils' through the years that are now proven to be affective...from herbs, supplements to body work.
if it helps, is safe, shows improvements..and is cheap...why put it down?
this person is not a Lloyd Wright, silver selling, miracle mineral cure all and so on.
I understand the cynicism though.
And I know for myself that the tx is very very bad for me...but i would not tell a person to not try it.
but I do tell them to do a load of research, ask questions, get tests before starting it.
By the way...since i can handle it, i use Cayenne and have been for a while now.
Although it goes against Traditional Chinese Medicine...do not eat spicy foods as one wants to cool the damp heat of hep...i sure feel good eating Cayenne and homemade no dairy hot as hell Chile Rellenos..and olive oil rubbed and baked Jalapeno peppers.
it has actually cleared me of H Pylory, indigestion, burning stomach....that's cheap too. Helps with circulation as well. Snake oil?
I don't see how this man is selling anything but giving his experience and trying to be helpful..especially for those of us who can not do tx, can't get it or decided against it.
By the way, i did research for a hcv, hiv and contagious diseases site.
I fully realize that there is the possibility that the hcv and damages from the tx may destroy this body somehow...but also have experienced for myself the benefits of other methods besides the tx. Having not been symptomatic to becoming disabled from tx got me moving to investigate sensible help for myself.
The astonishing numbers who have serious problems from doing the tx and the inflated numbers of 'cures'....the playing with numbers!
To those that are glad they did it, I am happy for you!
For the rest of us, we need better and safe meds,...and perhaps along with alternatives safely done.
For now, the so called alternatives, healthy living that work...as it's an individual thing as with the tx...is what we have.
Newbie does not always mean naive.
What's wrong with that?
There's not one 'expert' on this forum nor others....maybe some 'expert' docs on a few......some have read more and remember than others.....some, shockingly do no research on their own...there's a lot of info than when I was dx'd and did the tx...
.we're all supposed to be learning with and from each other as forums should...and we're not always going to agree...but we can discuss not argue..
.of course, there are the sales people and self promoters of their products...including the drug companies.
Interferon and riba were/are used for other ailments like so many other drugs around before it's use for hcv.
That LDN may not help those with hcv at all.....
And it may help.Not cure but help.
It's cheap and you need a script from a doctor to get it. It's a pharmy drug.
There have been a number of 'snake oils' through the years that are now proven to be affective...from herbs, supplements to body work.
if it helps, is safe, shows improvements..and is cheap...why put it down?
this person is not a Lloyd Wright, silver selling, miracle mineral cure all and so on.
I understand the cynicism though.
And I know for myself that the tx is very very bad for me...but i would not tell a person to not try it.
but I do tell them to do a load of research, ask questions, get tests before starting it.
By the way...since i can handle it, i use Cayenne and have been for a while now.
Although it goes against Traditional Chinese Medicine...do not eat spicy foods as one wants to cool the damp heat of hep...i sure feel good eating Cayenne and homemade no dairy hot as hell Chile Rellenos..and olive oil rubbed and baked Jalapeno peppers.
it has actually cleared me of H Pylory, indigestion, burning stomach....that's cheap too. Helps with circulation as well. Snake oil?
I don't see how this man is selling anything but giving his experience and trying to be helpful..especially for those of us who can not do tx, can't get it or decided against it.
By the way, i did research for a hcv, hiv and contagious diseases site.
I fully realize that there is the possibility that the hcv and damages from the tx may destroy this body somehow...but also have experienced for myself the benefits of other methods besides the tx. Having not been symptomatic to becoming disabled from tx got me moving to investigate sensible help for myself.
The astonishing numbers who have serious problems from doing the tx and the inflated numbers of 'cures'....the playing with numbers!
To those that are glad they did it, I am happy for you!
For the rest of us, we need better and safe meds,...and perhaps along with alternatives safely done.
For now, the so called alternatives, healthy living that work...as it's an individual thing as with the tx...is what we have.
Newbie does not always mean naive.
"I would not do a biopsy because they are dangerous and they do not tell you very much. A biopsy is basically a core sample about a millimeter square in area of your liver tissue. But your liver is huge and has multiple separate lobes. Unless fibrosis occurs in a completely homogenized way throughout the whole organ (highly doubtful), then the biopsy is a very random peek at the problem."
You are certainly entitled to your opinion but every hepatologist worth his salt in this country recommends a liver biopsy for those with geno 1. It is the gold standard which to me means most accurate method used to determine the health of the liver. There are other test but if I wanted to know whether I needed to treat immediately or had time to wait I would insist on a biopsy.
There will always be those who have a bad experience with biopsy, but for most it is uneventful.
If a person chooses to live their life with a lowered viral count rather than trying to treat and cure the virus with SOC that's fine. The fact remains, whether it's milk thistle, LDN or Lloyd Wright, HCV can't be CURED by these methods. I opt for a cure myself even with the odds at 50 percent.
You are certainly entitled to your opinion but every hepatologist worth his salt in this country recommends a liver biopsy for those with geno 1. It is the gold standard which to me means most accurate method used to determine the health of the liver. There are other test but if I wanted to know whether I needed to treat immediately or had time to wait I would insist on a biopsy.
There will always be those who have a bad experience with biopsy, but for most it is uneventful.
If a person chooses to live their life with a lowered viral count rather than trying to treat and cure the virus with SOC that's fine. The fact remains, whether it's milk thistle, LDN or Lloyd Wright, HCV can't be CURED by these methods. I opt for a cure myself even with the odds at 50 percent.
For those entering treatment biopsy is mandatory. It is correct that it should be done in those cases, in my opinion. It is the best method for information, but it stills damages the liver and it is recommended that they be given not less than five years apart, I believe. And you are correct, excessive bleeding occurs in only about 1% of cases. For me, in my present circumstance it is not necessary; there is no timetable, as in tx and I am committed to my program for the long haul, no matter what a biopsy would reveal in the short term.
And when I said that I regretted taking interferon, that shouldn't be taken as a recommendation for anyone not to do it. Every individual has unique circumstances. It is appropriate for most people to try it, but I suggest they go into it with their eyes wide open. And they should be aware that conventional medicine has no plan for how to clean up the internal mess and long-term damage that the drugs create. My attempts to deal with those aspects of post-treatment led me inmsany ways to my present strategy of dealing with the virus as a whole.
The point is, that if you are in the fifty percent that interferon doesn't work on, what do you do? Some people give interferon another try, some do not or cannot. Those people deserve an option, but to deal with an alternate program requires a dedication and an acceptance of responsibility for managing your own program. That is not for everyone. Many people, rightfully, defer decision-making to their doctors, and that is the right thing to do in many, if not most cases.
I am aware that my program is pretty unique and that most people will not try these things. But LDN is kind of a no-brainer. Cheap, no side effects, beneficial in innumerable ways, the only down-side is that it might not cure your incurable disease.
Also, why not try LDN post treatment, after interferon has destroyed your immune function? Or why not try it before treatment, to build up your immune system to its full potential as you enter treatment? Some have even suggested using it with tx, as it has been used with chemo for cancer.
Best wishes,
Mike H
And when I said that I regretted taking interferon, that shouldn't be taken as a recommendation for anyone not to do it. Every individual has unique circumstances. It is appropriate for most people to try it, but I suggest they go into it with their eyes wide open. And they should be aware that conventional medicine has no plan for how to clean up the internal mess and long-term damage that the drugs create. My attempts to deal with those aspects of post-treatment led me inmsany ways to my present strategy of dealing with the virus as a whole.
The point is, that if you are in the fifty percent that interferon doesn't work on, what do you do? Some people give interferon another try, some do not or cannot. Those people deserve an option, but to deal with an alternate program requires a dedication and an acceptance of responsibility for managing your own program. That is not for everyone. Many people, rightfully, defer decision-making to their doctors, and that is the right thing to do in many, if not most cases.
I am aware that my program is pretty unique and that most people will not try these things. But LDN is kind of a no-brainer. Cheap, no side effects, beneficial in innumerable ways, the only down-side is that it might not cure your incurable disease.
Also, why not try LDN post treatment, after interferon has destroyed your immune function? Or why not try it before treatment, to build up your immune system to its full potential as you enter treatment? Some have even suggested using it with tx, as it has been used with chemo for cancer.
Best wishes,
Mike H
I understand you are looking for the best option since you had to stop treatment. I truely wish you well no matter what you do.
Do youself a favor before it is to late. Continue with your present regimen if it makes you feel better. But if you want to live a long life without HCV, treat again with one of the new drugs in phase 3 trials coming out in the next few years. These new drugs will most likely offer a shorter course of therapy. I can say 100% that the only way you will ever see the greatest words someone with HCV can see on a PCR test, "NOT DETECTED" is if you treat with the conventional / trial drugs!
I'm in the Telaprevir trial and saw that "UNDETECTED" word at 3 weeks. I tried everything on the internet and took 20 PCR tests over 2 years and never saw the word "UNDETECTED" until I joined this trial.
No one really knows what harm the supplements you are taking or the harsh treatment drugs I'm taking will do to us in the future but I know what will happen if I leave HCV in my body untreated. With my treatment at least I have seen "UNDETECTED" and a chance of seeing "UNDETECTED" on all my future PCR's. This makes it all worth it.
Do youself a favor before it is to late. Continue with your present regimen if it makes you feel better. But if you want to live a long life without HCV, treat again with one of the new drugs in phase 3 trials coming out in the next few years. These new drugs will most likely offer a shorter course of therapy. I can say 100% that the only way you will ever see the greatest words someone with HCV can see on a PCR test, "NOT DETECTED" is if you treat with the conventional / trial drugs!
I'm in the Telaprevir trial and saw that "UNDETECTED" word at 3 weeks. I tried everything on the internet and took 20 PCR tests over 2 years and never saw the word "UNDETECTED" until I joined this trial.
No one really knows what harm the supplements you are taking or the harsh treatment drugs I'm taking will do to us in the future but I know what will happen if I leave HCV in my body untreated. With my treatment at least I have seen "UNDETECTED" and a chance of seeing "UNDETECTED" on all my future PCR's. This makes it all worth it.
It's known that doing a biopsy in one area does not give a full liver histology.
Some will have biopsies done in more than one area of the area because they know this.
Liver biopsies are not just highly recommended for geno 1's as well.
I am not recommending to not have biopsies done, to be clear.
It's unnecessary if one is not contemplating doing tx, cannot or will not.
I do other tests to just get an idea these days.To keep up with what's going on within the body..or hopefully nothing abnormal. So far so good.
You mad your choice Trinity to be cleared for good and that has no affect on me in any negative way. You know your body more than anyone else and what it can handle and your mind too.
A lowered viral count usually means nothing...it's the activity of the virus that counts.
The inflammation.
Many a people with a low viral load have severe scarring. That includes geno 2's as well.
'Cure' is still iffy when it comes to hcv.
There are those with no virus detected in blood who continue to have liver damage and other symptoms.
This does not mean that I think that all those with svr are this way.
Tx is the strongest and the only thing that has gotten hcv into remission for some.....
Although the figures are going higher with extended tx and upping doses, infergen and the trials with the inhibitors,,,I do wish that better and safe treatments would be had for all.People are badly hurt by the tx.
Someday, maybe, if we are not all wiped out...Earth too....treatments for diseases like hcv, cancer, hiv and so on will look like the once remedy for syphilis...mercury treatment.
I opted for a 'cure' myself but like so many, it didn't work and messed with the quality of life.
Express one's self..post info you have foud and or learned via experience...
and let it be.
It's up to each individual and what can and cannot be done.
The protocol I am on has made vast improvements. Perhaps, Mike H,'s protocol may do better.
Let's try to be more understanding and respectful of each person's circumstances and decisions.
Some will have biopsies done in more than one area of the area because they know this.
Liver biopsies are not just highly recommended for geno 1's as well.
I am not recommending to not have biopsies done, to be clear.
It's unnecessary if one is not contemplating doing tx, cannot or will not.
I do other tests to just get an idea these days.To keep up with what's going on within the body..or hopefully nothing abnormal. So far so good.
You mad your choice Trinity to be cleared for good and that has no affect on me in any negative way. You know your body more than anyone else and what it can handle and your mind too.
A lowered viral count usually means nothing...it's the activity of the virus that counts.
The inflammation.
Many a people with a low viral load have severe scarring. That includes geno 2's as well.
'Cure' is still iffy when it comes to hcv.
There are those with no virus detected in blood who continue to have liver damage and other symptoms.
This does not mean that I think that all those with svr are this way.
Tx is the strongest and the only thing that has gotten hcv into remission for some.....
Although the figures are going higher with extended tx and upping doses, infergen and the trials with the inhibitors,,,I do wish that better and safe treatments would be had for all.People are badly hurt by the tx.
Someday, maybe, if we are not all wiped out...Earth too....treatments for diseases like hcv, cancer, hiv and so on will look like the once remedy for syphilis...mercury treatment.
I opted for a 'cure' myself but like so many, it didn't work and messed with the quality of life.
Express one's self..post info you have foud and or learned via experience...
and let it be.
It's up to each individual and what can and cannot be done.
The protocol I am on has made vast improvements. Perhaps, Mike H,'s protocol may do better.
Let's try to be more understanding and respectful of each person's circumstances and decisions.
Good post and an interesting read. It’s great that you are doing so well.
Non-IFN talk is somewhat taboo, at least until an anti-Diarrhea drug came along that drops viral load quickly.
Non-IFN talk is somewhat taboo, at least until an anti-Diarrhea drug came along that drops viral load quickly.
Time out Canary. I'm not trying to be disrespectful of any one's circumstances or choices. With advanced stage 3 liver disease I didn't have any choices and I do not advocate treatment just for the sake of it.
I've been on this forum a long time and listened to others testimony about treatment, side effects and results to know it is strictly up to the individual and their circumstances regardless of what forum members say or circumstances dictate.
Many can wait, take supplements or whatever makes them happy and feel better because of it. Treatment was difficult for you and did not work I'm sorry that happened.
It's encouraging to hear you are seeing some success with your current protocol.
My whole point which I will reiterate was biopsy is the best method to determine the stage of liver damage and there is no known cure for hcv other than SOC at this current time. What anyone else chooses is their own business and if Mike remains on LDN for the rest of his life I don't have a problem with it.
It's important people make educated decisions about tx and alternative methods.
I've been on this forum a long time and listened to others testimony about treatment, side effects and results to know it is strictly up to the individual and their circumstances regardless of what forum members say or circumstances dictate.
Many can wait, take supplements or whatever makes them happy and feel better because of it. Treatment was difficult for you and did not work I'm sorry that happened.
It's encouraging to hear you are seeing some success with your current protocol.
My whole point which I will reiterate was biopsy is the best method to determine the stage of liver damage and there is no known cure for hcv other than SOC at this current time. What anyone else chooses is their own business and if Mike remains on LDN for the rest of his life I don't have a problem with it.
It's important people make educated decisions about tx and alternative methods.
The last line in my posting was for all.
as you can see, there is no 'To' listed.
We are basically saying the same thing in your recent post.
So the time out...no reason for that.
My liver histology is advanced also. I am one who's liver became worse from doing the tx...that's me. It was literally killing me.
And a slow responder....made it down to 300 at 6 months.
I had every side and then some. I cannot even recall most of that experience as well.
Lost my mind. Am finally recovering some of that. Memory and some other things are still not like it was though...I was sharp. Not bragging...it's just a wonder at what has been lost.
So...i wish that there was some chance of getting that svr and hopefully feel much better after doing some sort of tx. I can't. Not with the standard tx involved.
Even if I wanted to.
I am and have to be grateful for still being able to be somewhat ok after that horrible experience and the years of suffering.
And as i said..in another way...as you...people do need to make educated decisions and be an advocate for self. Can't only go by what docs say either.
if so, I should have been dead a few years back......and I would have just dealt with 'flu like symptoms throughout tx...ha.
There is so much more info these days and more to come....hopefully.
We all need to tell our side of the story, for others' sake and also so that the medical community will really start to hear us.
I was not attacking you or being demeaning towards you, Trinity.
as you can see, there is no 'To' listed.
We are basically saying the same thing in your recent post.
So the time out...no reason for that.
My liver histology is advanced also. I am one who's liver became worse from doing the tx...that's me. It was literally killing me.
And a slow responder....made it down to 300 at 6 months.
I had every side and then some. I cannot even recall most of that experience as well.
Lost my mind. Am finally recovering some of that. Memory and some other things are still not like it was though...I was sharp. Not bragging...it's just a wonder at what has been lost.
So...i wish that there was some chance of getting that svr and hopefully feel much better after doing some sort of tx. I can't. Not with the standard tx involved.
Even if I wanted to.
I am and have to be grateful for still being able to be somewhat ok after that horrible experience and the years of suffering.
And as i said..in another way...as you...people do need to make educated decisions and be an advocate for self. Can't only go by what docs say either.
if so, I should have been dead a few years back......and I would have just dealt with 'flu like symptoms throughout tx...ha.
There is so much more info these days and more to come....hopefully.
We all need to tell our side of the story, for others' sake and also so that the medical community will really start to hear us.
I was not attacking you or being demeaning towards you, Trinity.
I look at the labs generally this way:
Viral load is an indicator of the present strength of the immune system. It does not correlate with liver enzymes or degree of fibrosis. Liver enzymes measure present degree of inflammation. It doesn't correlate with the other tests either. Degree of fibrosis is the most important because it measure the degree of impairment of the liver. That is measured by biopsy and fibrosis is what matters; it's what kills you.
So all are important in their own way. LDN helps viral load because it strengthens the immune system. It also drastically reduces inflammation, thereby decreasing oxidative damage. Phophatidylcholine is fibrinolytic and that helps reverse the fibrosis. Human placenta stimulates the bodies levels of insulin-like growth factors (IGF-1) that help regenerate liver tissue. Fibrinolytic activity and tissue regeneration is possible due to the combined effect of this multi-pronged approach. For instance, fibrosis is known to be reversed in the absence of the virus, even without phosphatidylcholine, so the drastic reduction of the virus by LDN offers an opportunity to reverse fibrosis while the conditions are ripe.
Reversing fibrosis is the key. That takes you backwards down the time-line of your liver life. Reversing fibrosis is possible due to the suppressive effect of the virus by the LDN-activated immune system response. The absence of inflammation also is key to help heal the liver tissue.
We live with all kinds of viruses throughout our whole lives. I believe that mine can be managed, I believe that I will have many future years with excellent quality of life. For me that is the key - quality of life. Good health defines quality of life for me. That's why elimination of the virus is not totally important to me.
And yes, I might stay on LDN for the rest of my life. That would be fine with me.
Nice to talk to you all!
Mike H
Viral load is an indicator of the present strength of the immune system. It does not correlate with liver enzymes or degree of fibrosis. Liver enzymes measure present degree of inflammation. It doesn't correlate with the other tests either. Degree of fibrosis is the most important because it measure the degree of impairment of the liver. That is measured by biopsy and fibrosis is what matters; it's what kills you.
So all are important in their own way. LDN helps viral load because it strengthens the immune system. It also drastically reduces inflammation, thereby decreasing oxidative damage. Phophatidylcholine is fibrinolytic and that helps reverse the fibrosis. Human placenta stimulates the bodies levels of insulin-like growth factors (IGF-1) that help regenerate liver tissue. Fibrinolytic activity and tissue regeneration is possible due to the combined effect of this multi-pronged approach. For instance, fibrosis is known to be reversed in the absence of the virus, even without phosphatidylcholine, so the drastic reduction of the virus by LDN offers an opportunity to reverse fibrosis while the conditions are ripe.
Reversing fibrosis is the key. That takes you backwards down the time-line of your liver life. Reversing fibrosis is possible due to the suppressive effect of the virus by the LDN-activated immune system response. The absence of inflammation also is key to help heal the liver tissue.
We live with all kinds of viruses throughout our whole lives. I believe that mine can be managed, I believe that I will have many future years with excellent quality of life. For me that is the key - quality of life. Good health defines quality of life for me. That's why elimination of the virus is not totally important to me.
And yes, I might stay on LDN for the rest of my life. That would be fine with me.
Nice to talk to you all!
Mike H
Hepatitis C (originally "non-A non-B hepatitis") was only proved conclusively in 1989, some twenty years ago. By then, I'd already had the disease for twenty years.
Is it any wonder that this is a work in progress?
That said, many people experience success with the current standard protocol. I hope I do.
Sadly or tragically, many don't.
Individuals decide on evolving information and their personal situations as to how to proceed after failed treatment.
Some re-treat (like Andiamo who treated eight times), and are now SVR. Others will not or cannot go that route.
If I relapse, hmmm.............I will cross that path if I come to it.
I may be dead of heart disease by then, which scoops up and puts to rest about three thousand Americans every day.
Is it any wonder that this is a work in progress?
That said, many people experience success with the current standard protocol. I hope I do.
Sadly or tragically, many don't.
Individuals decide on evolving information and their personal situations as to how to proceed after failed treatment.
Some re-treat (like Andiamo who treated eight times), and are now SVR. Others will not or cannot go that route.
If I relapse, hmmm.............I will cross that path if I come to it.
I may be dead of heart disease by then, which scoops up and puts to rest about three thousand Americans every day.
Thank you for explaining...but what I don't understand well at all is why those with very low viral loads continue to have severe progression of scarring.
And then some who's viral loads are off the charts and have minimal damage and stay that way?
Is the immune system fighting extra hard in the high viral load scenario?
The low viral loads with serious on going damage be due to a weak immune system so no matter the count the virus is attacking?
also. hcv affects and infects other organs..the body.
Sometimes it's not always the fibrosis that/cirrhosis that can kill, correct?
I am going to check out your protocol thoroughly.
So, thank again for your input, Mike.
And then some who's viral loads are off the charts and have minimal damage and stay that way?
Is the immune system fighting extra hard in the high viral load scenario?
The low viral loads with serious on going damage be due to a weak immune system so no matter the count the virus is attacking?
also. hcv affects and infects other organs..the body.
Sometimes it's not always the fibrosis that/cirrhosis that can kill, correct?
I am going to check out your protocol thoroughly.
So, thank again for your input, Mike.
Fibrosis is associated with inflammation and damage due to oxidation; also lipid peroxidation. Unbound iron, steatosis (fatty liver), oxidative stress all contribute to the scenario. I suppose an immune system could be pounding the virus at the same time that massive inflammation is occurring. And I suppose that the immune system could be weak, but the inflammation could be in control at the same time. But in my case the above relationships hold true. Everyone is different. But I think generally people with low viral counts and low inflammation have the greatest chance at fibrinolytic activity.
I would guess also that people with high fibrosis and inflammation and low viral counts would benefit from antioxidant therapy as well as anti-inflammatory substances. Hep c does produce systemic inflammation. Brain fog is a result of inflammation in the brain (so is autism).
In short, there probably is no answer. It all depends on the individual situations.
Sometimes we just have to paddle our own canoes.
Mike h
I would guess also that people with high fibrosis and inflammation and low viral counts would benefit from antioxidant therapy as well as anti-inflammatory substances. Hep c does produce systemic inflammation. Brain fog is a result of inflammation in the brain (so is autism).
In short, there probably is no answer. It all depends on the individual situations.
Sometimes we just have to paddle our own canoes.
Mike h
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