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LDN
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LDN

Is anyone familiar with treatment using LDN? Is this stuff for real?
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Avatar_f_tn
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.
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Avatar_n_tn
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.
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Avatar_m_tn
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
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Avatar_m_tn
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.
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Avatar_m_tn
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
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510626_tn?1219509169
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.
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Avatar_m_tn
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
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Avatar_m_tn
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
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Avatar_m_tn
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
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Avatar_m_tn
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"
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Avatar_m_tn
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

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I'm interested in what you  have to say. Thank you for sharing this information.
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510626_tn?1219509169
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.
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Avatar_f_tn
"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.
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Avatar_m_tn
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
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Avatar_m_tn
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.
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510626_tn?1219509169
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.
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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.
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Avatar_f_tn
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.

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510626_tn?1219509169
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.
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Avatar_m_tn
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
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Avatar_f_tn
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.





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510626_tn?1219509169
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.
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Avatar_m_tn
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


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Mike, I never saw a study that showed fibrosis can be reversed with  hcv.  Do you have a link to a study?

Canary, there was a study a few months ago that suggested that a strong immune system may cause more damage to the liver than a weaker system.  As the strong immune system attacks the virus, the virus evades by mutating and replicating at a faster rate, Darwinism as its finest.  As a result there is more inflammation and the inflammation heals as fibrosis.




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Avatar_m_tn
No, there was a study that showed by pre and post treatment biopsy, fibrosis decreased over the time span of interferon treatment due to the fact that the viral load was lowered or non-detected over that period of time and inflammation was reduced. I think it is also established that fibrosis can decrease significantly by itself after successful treatment. This is due to the lack of inflammation and normalizing of the tissues. I think I saw that on this site on the home page today. The poster claimed up to two stage decrease in fibrosis after SVR.

The study that I was thinking about indicated that during interferon treatment and before SVR was achieved, fibrosis was reversed due to the lowered viral load and the decrease in inflammation. The point is, if the viral load can be lowered and the inflammation is eliminated, then why would that not be a situation conducive to reversing fibrosis, as it is during interferon treatment? Especially using fibrinolytic nutrient building blocks like phosphatidylcholine?

By the way that study first alerted a lot of GEs that fibrosis could be reversed. They have denied that forever.

I can look up that study if you want, but you might have already heard of it. Let me know if you want it.

Mike H
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Actually, here a a couple studies on antifibrotic therapies but not the one that I was thinking of.

http://www.ncbi.nlm.nih.gov/pubmed/17414134?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/15704042?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
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Besides the virus mutating and becoming stronger from a strong immune system, could the immune system be also attacking the body itself, such as the liver?
I have been thinking that people also need to be tested for autoimmune hep along with hcv.

Mike, again, i say that my liver histology became far worse from  tx. Biopsies showed this. No improvements,worsened, even though viral loads did go way down and liver enzymes went into the teens.
There are other indicators that things were not going right upon looking at my medical reports but not necessary to post that mess.
Reversal does not happen for everyone. It can go the to other end of the spectrum on tx.
there is still a lot to be know about hcv and treatment now and for the future.
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I agree, lots of unpredictable things can happen on treatment. I was a complete mess after treatment, and it took a year to gather enough energy to move forward. Kind of inexplicable about your histology degrading; I don't know what to think about it. I think its possible that things could be different using different treatments, but that's a good faith guess more than anything.

Another point is that a strong immune system can cause inflammation and oxidation (and possibly fibrosis) without autoimmune involvement. White cells use pro oxidants and reactive oxygen species to do their jobs. So it is possible that the immune system could do a good job on the virus, while also causing liver inflammation and fibrosis.

I think a multi-prong approach is good to address all the issues using different but complementary techniques. The issues that I have identified are inflammation, viral load, and fibrosis. There are many techniques that could be effective for all of these issues.

Best regards and good night!

Mike H
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I apologize for our misunderstanding earlier. I appreciate that you believe in your choices.

I also believe in my choices. My perspective is based on both sides of the issue. I am a health care professional, but also a patient.

I am also a scientist. I know that there are many remedies that have been proven in the field and in well-documented studies to help. Lipoic acid, phosphatidylcholine, megadose vitamin IVs and scores of other substance and techniques have all been studied and reported to produce good results. That's science, not opinion.

My question to you is: if these things are out there that have been proven scientifically to be effective, why does the conventional doctor not advise his patients to use them - even orally? Why no supplement and dietary advice that could make a huge difference, based on scientific well-published observations? Why the negativity and uncertainty when the drug program fails, the complete absence of any type of advice or suggestions about how to proceed? Being closed-minded and having a one-track mind is less scientific, not more scientific. Giving up is not scientific, it is unscientific.

The reason that the proven nutritional and herbal substances are not adopted mainstream is that your doctor does not know about them, and does not care to find out. He doesn't have the time to research stuff he doesn't know about. Even if it works.

A little-realized truth is that the medical system has written efficacy out of the medical logic system. Whether a substance or a therapy works or not is irrelevant to the system. The way this is done is that in the system there is no relevant science except FDA drug approval clinical trials. All other science, valid, well-reasoned studies, experience in the field, therapies that have been proven to work are all invisible to the system.

An example is chemo for cancer. It has a success rate of like 3%, but it is still the first option and no one is looking for another one. The fact that it doesn't work very well is irrelevant. Or interferon with a 50% success rate, but which leaves 50% with worse health and apparently extremely limited options despite the fact that there are plenty of options out there that acould help them; that have been proven to work. But the fact that these alternative therapies actually have been proven to improve health is also invisible to the system.

The truth is that interferon is mass medicine. It is our country's epidemiological policy that interferon, or whatever the new drugs are now, is THE treatment for everyone with this disease. It is the best method for the population as a whole. So, you are not going to get the best care from conventional medicine. You are going to get statistically average care. If you want the best care you have to find doctors that have specialized in searching out and putting into practice the newest options.

Unfortunately those kinds of doctors are expensive - although their treatment are usually only a fraction of the cost of conventional medicine, they are still not covered by insurance. They can charge a lot because healing people is good business. But some of the methods are cheap and if someone was so inclined, he or she could in rare cases actually take control of their life and make a huge difference in their own health.

Anyway, good luck to you. I hope you achieve your goal of SVR! Personally, I would rather have my health and the virus as opposed to bad health and no virus. That's not a recommendation, though, that's just me.

Mike H


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My labs came back and my viral load is higher at 219,000 IU/mL up from 58,000 4.5 months ago, but still in the very low range. I was 1.6 million when I started LDN and I have been at 7 million and above for a couple years in the last four, so I'll take it.

Also my AST/ALT is up 109/111, up from 54/68 last time. but still better than pre LDN of 109/172.

My LFT's are good>

I used to have high unbound iron, but not anymore. My mother had hemochromotosis too.

My alk phos is 80 (ref rg.: 39-160)
My GGT is 29 (ref rg.: 5-80)
fibrinogen 204 (ref fg.: 200-400)
bilirubin 0.5 (ref rg.: 0.2-1.3)

Not even doing the iron this time, but it was way normal last time.

That was the good stuff. The bad stuff:

AST/ALT 109/111

HEP C RNA PCR QNT: 219,000

DHEA sulfate 44 (ref. rg.: 70-310)

Still hypothyroid, but T3 and T4 are normal.

So, still a lot to be happy about, but the main problems are damage from the meds, not particularly the virus. I'll post my next labs.

Thanks again,

Mike H

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Avatar_f_tn
I was doubtful when you first posted and remain the same now.  But as you said, everyone must paddle their own canoe.  Your results and not what you expected and show little promise even with a reduced viral load.

You have an anti treatment drug approach and that's fine but please know it's not the tx meds that damage the liver although in rare cases, treatment drugs have effected the liver adversly. In most cases enzymes return to normal while on tx.  It's the chronic hepc virus that remains in the body whether the vl is low or high which effects ALT and AST.  Inflammation continues and the liver is ravaged.  
That's really the basis of it, eradicate the virus, the liver will thrive again.  Without cure, no chance of that happening.  
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Well, I don't know about them being not what I expected. Just because my enzymes are elevated is not that great a cause of alarm - that is the most transitory of all the tests. I have seen enzymes vary 25% on a split sample. They are also notoriously variable due to things like physical workouts and massage - both of which are things that I do frequently.

The LFTs and the viral load are all pointing in the right direction, so I am quite pleased. That is my opinion, and the opinion of my doctor, but anyone can have a different opinion.

However, I have to disagree with you about the safety of the interferon/ribavarin. Retinal scarring, hypothyroidism, and mitochondrial damage are all associated with tx - and that's just off the top of my head. I'm pretty sure there are a lot more forms of damage that are known. My TSH was normal all my life until tx, now I am hypothyroid. Here is a paper that talks about the damage that ribavarin does to mitochondria:
http://www.hepatitis-central.com/mt/archives/2009/01/hepatitis_c_fat.html

Anyway, I'll post again when I do my next labs.

I feel great, by the way and my energy keeps going up.

Good luck to you, in your own canoe trip through life! I genuinely hope you find your way, no matter what route you take.

Mike H
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Avatar_m_tn
You wrote"

"No, there was a study that showed by pre and post treatment biopsy, fibrosis decreased over the time span of interferon treatment due to the fact that the viral load was lowered or non-detected over that period of time and inflammation was reduced. I think it is also established that fibrosis can decrease significantly by itself after successful treatment. This is due to the lack of inflammation and normalizing of the tissues. I think I saw that on this site on the home page today. The poster claimed up to two stage decrease in fibrosis after SVR."

From the information I have read liver histology only improves in patients who have achieved SVR - eradicated the virus. Lowering viral load or liver enzymes has not been shown to be associated with, or responsible for, improved liver histology.
Here is a recent excerpt from Clinical Care Options in which Ira Jacobson MD is discussing the results from Peg/Riba maintenance treatment.

"Despite the fact that there were greater reductions in viremia, alanine aminotransferase, and necroinflammation in the patients who received peginterferon alfa-2a, none of the important clinical outcomes were favorably affected by the use of maintenance therapy as shown in the rates of death, decompensation, hepatocellular carcinoma, and increase in fibrosis on liver biopsy. So, this has widely been perceived as a negative study. In my practice and in those of many of my colleagues, these results had a notable dampening effect on the application of maintenance therapy in practice."

This is not new information. I think we all feel better when we see a viral decline in any setting as well as when we see low liver enzymes and my personal opinion is that, generally speaking, low liver enzymes are better than high liver enzymes. But that is not to say that low enzymes means improved or even stable liver histology. Improvement in liver histology in the hepatitis c setting is invariably seen in SVRs and not in those patients who do not achieve viral eradication notwithstanding a decline in viral load or liver enzymes - you gotta be SVR.

For some time now many of the experts have believed that the damage from HCV is primarily due to the immune response to the virus, which often results in collateral damage whereby uninfected cells are destroyed along with HCV infected cells. I have always believed that might explain why people with low viral loads can present with advanced liver damage while some patients with high viral loads present with little liver damage. In fact, many investigators suggested that the hepatitis c virus, in and of itself, is not cytopathic. Recently there is new evidence that suggests that the virus itself may very well be cytopathic. Still I think most people agree that immune response is a major contributor to inflammation, cell death and fibrosis progression.

I sincerely believe that the vast majority of member here wish you the best in whatever course you pursue. Deep down I think we'd all like it if your approach was successful. But, most all of us have searched and scoured the internet and everywhere else for some viable approach other than interferon and ribavirin. I think it's safe to say that the vast majority don't believe that any alternatives presently exist aside for the PIs on the near horizon - hopefully. And we are a suspicious group because it's true that we have seen snake oil salesmen peddle their goods here along with the inevitable heartbreak for those who buy their junk science. So that may explain our response when we hear that someone has another way.
We'd love it if it were so.

Mike

 
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Have you done any research on blue green algae and (stem enhance)...which enchances stem cells to regrow liver cells?
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I understand what you say Mike. I am not surprised that maintenance itnerferon/riba does not result in better health or prognosis. But that study is measuring a much different protocol than mine.

But my question is, if fibrosis is decreased during conventional treatment that does not result in SVR, then why do you say that SVR is necessary for it to happen? I remember not long ago the doctors were saying that fibrosis is completely irreversible, in contradiction to the evidence. Now they have backed off of that, but to go from a completely wrong stance to a modified stance in the face of evidence, means to me that they might not know what they are talking about.

Histologically, I was a stage three for fibrosis 5 years ago. But look at my GGT and fibrinogen. That does not look like a stage 3 or 4. All my LFT's are good, platelets are good, bilirubin is good. In fact all my labs are normal except enzymes. viral load and hypothyroid associated labs, and I do extensive labs quite often.

Practically speaking, a very low viral load is certainly more favorable than a very high viral load, which I had recently. I also agree that I would rather have low enzymes than high, but I also did not mention that I had a fever on the Saturday before my Monday draw, so that probably skewed things a bit.

You know, phosphatidylchline has been shown to be hugely protective against fibrosis and cirhosis. Look at it in pubmed. Also alpha lipoic acid, and glutathione, and antioxidants, selenium, and on and on. I can send you a pdf on the great things that phosphatidylcholine does for damaged livers and reversal of fibrosis if you'd like. Orthomolecular nutrition is a long-established science-based field for these types of therapies, backed to the hilt by science. see www.orthomoleclular.org But my question is, since these nutrients are proven to be effective, then why are they taboo for doctors to use them? Just because they are not drugs does not mean they cannot significantly improve bad situations. To argue that only drugs are appropriate for hep c is to ignore the science.

And Rocker, I have not studied blue-green algae for these uses, but what I do use is a prescription only Japanese product, approved by their Ministry of Health since 1974 called LAENNEC Human placenta extract. It increases insulin-like growth factor 1 (IGF-!) and is filled with growth promoting cytokines, etc., to help stimulate re-growth of liver tissues. The company harvests about 500 human placentas from Japanese hospitals every year to make it. It has no side effects, and the Japanese Ministry of Health is usually even more cautious than our own FDA. It is prescription only.

Here is a link: http://laennec.wordpress.com/

My doctor is the best on the planet, I believe. He is a psychiatrist, MD and neurologist. He worked with the famed Dr. Abram Hofer of orthomolecular nutrition fame. It is also wonderful that we are completely on the same page with how to proceed. So I am not worried about quackery except when I go to a conventional doctor (in my opinion).

In the old days, the holistic healers were pushed aside by the new doctors using quicksilver, or mercury to treat patients. They called them "Quacks" short for "quacksilver". It is ironic that now the doctors using toxic drugs are calling the gentle methods used by holistic healers quacks, in a reversal of logic.

Sorry - I couldn't resist! My biases are plain, and I acknowledge them; I plead a mea culpa. I wish we all could acknowledge our prejudices. But I think if we all look at the science, then we can come to slightly more objective conclusions.

I wish everyone well on their paths, whether it be conventional medicine or not. But I think we all should realize that there are many things we can do to improve our situations, even if we are going the path of conventional treatment. What is wrong with strengthening your immune system with LDN in the face of chronic viral disease? In my opinion, use of many of the substances in my protocol are common sense, even for people going the conventional route. If conventional medicine was doing the very best possible job, most of these things would be part of every protocol.

Like I said we all paddle our own canoes. Just don't let your doctor paddle your canoe - he's too busy and not very interested.

MikeH


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Avatar_m_tn
"But my question is, if fibrosis is decreased during conventional treatment that does not result in SVR, then why do you say that SVR is necessary for it to happen?"

To my knowledge it doesn't happen - decrease in fibrosis - in the absence of SVR.

My point was that irrespective of protocol my reading suggests that in an HCV setting when there is detectable virus there is no reversal or decrease in fibrosis - no improved histology.
If you have studies showing HCV infected people improve their histology without achieving SVR I would love to see them.
BTW, your numbers look improved but without a biopsy or one of the newer tests - Fibrotest for example - I see not evidence of histological improvement but then I have no baseline to compare it to either. And with biopsies a lot depends on the guy reading it and though you have the best doctor in the world I like to see a seasoned hepatologist reading slides before I get too excited.

Good luck,
Mike
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Avatar_f_tn
"My doctor is the best on the planet, I believe. He is a psychiatrist, MD and neurologist. He worked with the famed Dr. Abram Hofer of orthomolecular nutrition fame.He is a psychiatrist, MD and neurologist. He worked with the famed Dr. Abram Hofer of orthomolecular nutrition."

I would not go to a podiatrist for a pap smear even though us ladies refer to the gyno as the toe doctor but you get my drift.

One of my doctors is a brilliant hepatologist in this country with published studies and does take the time for every one of his patients so your statement that all doctors are too busy and not very interested is not true.  It is important to be proactive in the care and treatment of hepc but I would much rather have the support from published studies and a renowned hepatologist than the simple testimony on a technique for lowering viral load which is not accepted or used within the hepc world wide medical community.
I'm keep paddling towards a cure....but no back paddling for me.

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Yeah, of course a biopsy is the definitive test - even though it is highly variable and possibly inconsistent.

And Trinity, if you want to see studies, just follow my links in my last post. Many people claim there is no science based solely on the fact that they refuse to look at what is there. Follow my links and then investigate it in PubMed and do some research for yourself.

And I would like to make a point regarding a fundamental understanding about science literature, however.

The drug approval process generates the studies that concern the medical community, but those studies are a small subset of the science studies being performed. Just because the system has been designed to ignore all other types of science, does not mean that important research is not being done that support a wide number of valid therapies.

Science means looking at the evidence, not ignoring it.

Mike H
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You speak words of wisdom.
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If those treating with SOC now or triple therapy in the future are fortunate enough to SVR the battle between virus verses liver is over.  They may face other hurdles but most assuredly they will not be facing transplant.   I suspect your battle will still be raging even with LDN therapy.

Good Luck in your pursuits.

Trinity
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Thanks everybody,

and good luck to you all.

I'll post my next labs and stir things up again next time. Communication is good!

Mike H
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Avatar_m_tn
Some people have no choice but to use alternative choices....its either that or the grave...SOC TX just dont work for alot
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Avatar_m_tn
Check out the stem enchance....I HAVE...ive been on it for 2 years before i started my current SOC
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Avatar_m_tn
I am still waiting for you to post a reputable study showing even just one HCV patient with documented improved histology who is not SVR.
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Sure, Mike no problem,

Alternative Medicine Review, Volume 1, Number 4, 1996

(PC stands for phosphatidylcholine)

This chapter is in regards to viral liver damage. I will also post the next chapter regarding severe liver damage;

Controlled Trials with PC in Viral
Liver Damage

A number of viruses can damage the
liver, by precipitating widespread inflamma-
tory breakdown which is further complicated
by overactivation of the immune system (au-
toimmune complications).  Once successfully
installed in the liver parenchyma, such viruses
can become chronic and very hard to dislodge.
Liver viruses (here simply called LV) can
wreak havoc with the liver’s functions.  Medi-
cal weapons for eliminating LV from the liver,
or for ameliorating their progressive damage,
have been limited.  Controlled clinical trials
have unequivocally established PC as safe and
reliable nutritional support for the liver against
the damage initiated by LV.
Mueting and collaborators in 1972
gave 16 subjects with chronic, aggressive LV
a relatively high intake of PC (2,050 mg per
day) for an average 8 months.26     A number
of clinical parameters improved, including
measures of the liver’s detoxification pathways
that metabolize amino acids and phenols, and
the authors concluded that PC was having a
“normalizing” effect on the liver as a whole.
From their large open study reported in 1973,
over the course of which some subjects re-
ceived PC for up to 5 years, Wallnoefer and
Hanusch noted a success rate for chronic, ag-
gressive LV infection of 35.3 percent.7
Hirayama, Yano and collaborators con-
ducted a double-blind trial in Japan in 1978,
using 124 subjects with various LV.27,28  They
gave PC (1350 mg per day) to a group of 58
subjects and placebo to 66 subjects, for twelve
weeks.  The PC group experienced significant
reductions in SGOT and SGPT levels when
compared with the placebo group; those with
higher enzyme values to begin with appeared
to benefit the most.  A subsequent blinded bi-
opsy assessment after 6 months confirmed that
in the PC subjects, the liver parenchymal tis-
sue had partially recovered from its earlier
damage; focal necrosis/cell death was lessened
in the PC group, and these subjects showed
signs of liver regeneration.
In 1981, Kosina and collaborators con-
ducted a sophisticated trial in Czechoslova-
kia that compared PC against drugs for the
management of viral-related liver inflamma-
tion.  They recruited 80 subjects with pre-
sumed acute LV infection (viruses hepatitis A
and hepatitis B), and divided them into four
groups of  20 subjects each.29 The first 2
groups were drawn from subjects whose bi-
lirubin levels were low (below 250 micro-
moles per liter) and were judged “moderately
serious.”  Subjects in Group I were adminis-
tered fortified PC (1350 mg) along with the
“standard treatment” that involved diet, rest,
vitamins, and glucose; Group II received the
standard treatment only.  Groups III and IV
were judged “serious,” with bilirubin levels
above 250 micromoles per liter.  Group III
received fortified PC and 580 mg daily of the
immunosuppressive drug prednisone (a drug
option for the suspected immune system
overactivation from LV); Group IV received
prednisone plus the standard treatment.
PC had a clearly favorable effect in this
trial.  Concerning the resolution of viral dam-
age, both Group I subjects (less severe) and
Group III (more severe) had their liver tests
return to normal markedly faster than the cor-
responding groups that did not receive PC.
Subjects who did not receive PC were more
likely to relapse (10% in the less severe, 25%
in the severe), while no relapses occurred in
the PC groups.  Upset stomach, jaundice, and
liver swelling, as well as the lab tests, all re-
solved faster in the groups treated with PC.
There was a trend towards lower occurrence
of the hepatitis B surface antigen (HBsAg) in
the PC groups as treatment progressed.
Jenkins and collaborators at King’s
College, London did a double-blind trial in
1982 on 30 subjects with progressing liverdamage from chronic LV (hepatitis B virus,
negative for HBsAg), as verified by biopsy.30
They randomly divided the subjects into two
groups of 15 each, kept them on the standard
immunosuppressive therapy (prednisolone or
azathioprine), then gave one group PC (2,300
mg per day) and the other placebo, for 1 year.
At the end of this period, the group given PC
had no clinical changes, while the placebo
(control) group had worsened.  Biopsies re-
vealed significant improvement of the liver
structure in the PC group, versus no improve-
ment for the controls.  More of the PC sub-
jects reported improved well-being than did
the controls (62% versus 43%).  In 3 of the 15
subjects given PC the viral infection was
judged to be inactive at the end of the trial,
while no subjects were judged inactive from
the placebo group.  Thus in this small con-
trolled trial, PC halted and partly reversed
chronic LV damage, improved overall well-
being, and “turned off” the virus in as many as
20% of the subjects.
In 1985, Visco and collaborators as-
sembled 60 subjects who were positive for
hepatitis B virus (assessed as presence of
HBsAg) and who had acute LV liver damage,
and divided them into two groups.31  Within
10 days from the onset of jaundice, on a
double-blind basis the subjects were started on
either fortified PC (1350 mg) or placebo cap-
sules.  Lab tests were conducted frequently,
and immune evaluations and clinical exams
were done at 30, 90, and 180 days (6 months,
end of trial).
By the 30-day mark, the group given
PC was significantly more improved than the
placebo group, with 50% being negative for
HBsAg versus 25% for the controls (p<0.05).
PC improved the rate of clearance of virus
antigen from the blood. The immune param-
eters were not significantly different, though
liver enzyme tests showed trends favoring PC.
In 1990, Hantak and collaborators in
Yugoslavia used PC to manage 24 subjects
with LV (hepatitis B virus).32  All the subjects
were chronically infected—they all had been
virus carriers for at least 6 months.  Seven had
viral antigens (HBeAg) which indicated a rela-
tively high degree of active infection.  The
other 17 subjects had no viral antigens and had
antibodies to the virus (anti-HBeAg), indicat-
ing that they were in a stage of relative viral
inactivity.  All subjects received  900 mg of
fortified PC per day.  After 4 months, the less
severely affected, antibody-positive subgroup
showed statistically significant improvements
in SGOT, SGPT, albumins, gamma-globulins,
and other biochemical measures.  The sub-
group that began the study with active virus
had statistically significant improvements in
immune measures, suggestive of clinical ben-
efit from PC.  The effects of PC in this small
and not well controlled trial were judged en-
couraging, and might have been more dramatic
had the daily intake been as high as in other
trials (a minimum 1350 mg of fortified PC,
rather than the 900 mg that was given).
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Here's the next chapter:

Controlled Trials with PC Against
Severe Liver Damage

This category of liver damage is char-
acterized by extensive fibrosis, which effec-
tively stifles whole zones of the liver.  Some-
times aggressive inflammatory changes are
also present.  This stage can be reached as a
consequence of persistent alcohol intake, per-
sistent viral infection, or the unchecked toxic
effects of any of the many other agents that
can damage the liver.  Given the severity of
the structural and functional damage to the
liver at this stage, lesser benefits are to be ex-
pected from PC supplementation than at ear-
lier stages. Yet still PC proved beneficial.
Fassati and collaborators in 1981 in a
controlled trial conducted in Prague, Czecho-
slovakia, studied 61 subjects with moderately
severe to severe functional breakdown of the
liver.33  The degree of advanced liver damage
(extensive fibrosis, inflammation, elevated en-
zymes) was assessed by biopsy and by a wide
range of blood biochemical tests.  Thirty-four
(34) subjects were given fortified PC (900 mg
per day), and 27 subjects served as controls.
The trial ran for 4 months, with each patient
serving as their own control for statistical
analysis.
Biochemical re-testing conducted at
the end of the trial showed that except for the
bilirubin values, all the other biochemical in-
dicators were significantly improved (p<0.01).
These included the albumin/globulin ratio, al-
bumin, bromsulfalein (BSP) clearance, SGPT,
and SGOT. The number of subjects positive
for HBsAg in the blood moved from 8 of 34
to 3 of 34 in the PC group; that of the controls
moved from 7 of  27 to 6 of 27. The trend
apparent in the PC group was not statistically
significant due to the small numbers of
HBsAg-positive subjects in both groups from
the beginning of the trial. The investigators
commented that fortified PC was the only in-
tervention they were aware of that seemed to
bring down viral antigen levels, and they urged
further investigation of this possible benefit
with larger groups of subjects.
In 1991, Ilic and Begic-Janev con-
ducted a randomized, double-blind, placebo-
controlled trial.34  They recruited 50 subjects,
all positive for HBsAg (hepatitis B virus anti-
gen) who had extremely severe liver damage
as verified by biopsy and immunologic test-
ing.  The test group was administered 1350
mg of fortified PC, and the control group re-
ceived a placebo.  Both groups were followed
for 1 year, with periodic sampling for lab as-
sessments, then at the end of the 12 months
they were biopsied again.
After 12 months the subjects given PC
had experienced considerably greater benefit,
as assessed both from the structural biopsy
findings and from the lab findings (p <0.001).
Among the PC group, 20 of 25 were judged
good to moderately good, versus 6 of 25 be-
ing moderately improved in the placebo group.
Six of the 25 in the PC group also lost the
HBsAg viral antigen, versus only 3 of 25 for
the placebo group.  Such “seroconversion”
indicated marked clinical improvement for
these fortunate subjects.  A number of cell-
structural, biochemical, immunologic, and
hematologic parameters were significantly
improved in the PC group as compared with
the placebo group.  Improvement in the PC
group continued well past the end of the trial.
As a rule, researchers working with
such severely affected subjects obtained bet-
ter results by maintaining the subjects on com-
bined intravenous PC and oral supplementa-
tion until substantial improvement had begun.
Other trials with severe liver damage,
though not controlled, are worthy of note.
Wallnoefer and Hanusch in their pioneering
study administered PC both intravenously and
orally to 130 subjects with advanced, fibrotic
liver damage.7 Once the clinical indicators
began returning to normal, they switched to
purely oral administration at relatively low
intakes (450-700 mg), which was continued
for months to years as necessary.  PC produced
benefits for 17.5% of these subjects, as con-
firmed from normalized enzyme levels and
improved tissue structure on biopsy.  Using a
similar strategy, they achieved benefit for 35.3
percent of their subjects with chronic viral in-
fection of a kind that was positive for viral
antigen and has an aggressive tendency to
progress to severe liver damage.  Kuntz re-
ported in 1989 on 10 subjects to whom he gave
PC intravenously at 2,800 mg per day.3  Im-
provements were seen as early as the seventh
day, and at the end of the 28-day trial period 3
subjects showed “dramatic, life-saving” im-
provement, 2 had “increasingly rapid improve-
ment,” 2 had gradual improvement, 2 had no
change; and 1 of the 10 subjects had died.
Kalab and Cervinka worked with 30
subjects who had advanced liver damage for
which pharmaceutical treatments had failed.35
Orally administered fortified PC (1350 mg
daily) produced clinical improvement after 6
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months, with favorable effects on the usual
enzyme indicators of liver damage.
In summary, the experiences from the
clinical trials discussed above concur with
findings from others36-40 to paint a clear pic-
ture of PC as an effective and safe nutrient for
liver damage of all degrees of severity.
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Dating back to 1972 and they still haven't introduced it as part of SOC.  Where are the studies regarding reversal of fibrosis and damage specifically attributed to the hepc virus?
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Watch this and let the fun begin....LOL

http://adfare03.adfare.com/ads/brian/bmi45.htm
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You're entitled to equal amounts of air time too.  

No comment on the pond scum.
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I didn't see Hepatitis C mentioned - did I miss it?
I won't comment on the methodology except to say that I am accustomed to seeing a significantly greater degree of specificity when assessing liver architecture.
I am not the least bit impressed or persuaded but you probably knew that anyway.
I am finished with this "discussion".
Mike
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I couldn't have paid good money and gotten the education I just did in 30min. Thank you all! And its in writting!
I have brain fog and can't remember x@! (anything). The tx did a job on that but it was bad anyway.
Thank you all for ana-lillies! My own words.
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I don't have any documentation but someone I know from a support group who did tx which did not work and she suffers from many problems from the tx itself and the hcv went in for her routine tests and also had a biopsy due to being severely tired, in pain and in general not well.
To see if liver histology has worsened, a biopsy was done and the one and only sample came back as having reversed by 2 stages.
The sample was taken from the same area that was done last biopsy.
She is not doing anything special except taking meds for the spinal degenaration and pain. Her diet is not all that health oriented..more convenience style.
in reality, there still isn't enough known and as it is being spoken and written about more...that each person is different and that therapies and treatments done individually based is the route to take.
Just as allopathic medicines do not always work for all, the same for 'alternatives'.
Just as some can be life threatening for some, some can be life savers.
It's choice and needs. So very individual.

And the algae spoken of is part of my diet. Good stuff and can tell the difference when I do not take it. Spirulina, blue green algae, barley, wheat grass juices  and broken cell wall chlorella also go into my health drinks/smoothies or taken in veg gel caps.
It's not a cure but excellant foods for ME that help to be nourished and so feel better.
These are farmed in clean waters and certified usda organic cultivated with strict standards.
They are not only nutritious but good for detoxing the body.
And as far as the PC supplement...it reads
''This category of liver damage is char-
acterized by extensive fibrosis, which effec-
tively stifles whole zones of the liver.  Some-
times aggressive inflammatory changes are
also present.  This stage can be reached as a
consequence of persistent alcohol intake, per-
sistent viral infection, or the unchecked toxic
effects of any of the many other agents that
can damage the liver.  Given the severity of
the structural and functional damage to the
liver at this stage, lesser benefits are to be ex-
pected from PC supplementation than at ear-
lier stages.''
So, it helped with viral infections too..what types?
Like Milk Thistle, medicinal mushrooms and other helpful agents well known today..it's not a cure...but numbers of docs suggest taking milk thistle while on tx...and it is standard with many with hcv.
If some things that are helpful for those of us who cannot do the 'soc', can't do it again or those who choose not too, why get defensive and out of kilter about 'alternatives' that are found to be helping?
No one on this thread is selling anything nor saying to others to not or to do anything.
It's individual..and an individual choice.



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If I have extreme ensaumnia and can not sleep at night will LDN still work even though I stay awake at night or does it work only when I am sleeping?
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I saw one of your post that said: The good thing is that it costs only $30 a month, without insurance

Please tell me where I can buy this LDN?
Dave G
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I saw one of your post that said: The good thing is that it costs only $30 a month, without insurance

Please tell me where I can buy this LDN?
Dave G
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Mike H no longer posts here and so I doubt he will answer.

There are other LDN threads here which you can use the board search engine to find.  You could also more easily search his old posts.

I would also suggest doing other searches of the web.  There are some utubes on LDN as well.  

I have never seen evidence that it is harmful.  There is not a lot of long term large studies which might prove it to be beneficial.  If the did exist one would have to agree what measurements one would use, what endpoints would would ascribe to prove benefit.  One would have to assess the numbers of people, the numbers of years they treated and somehow assert that the people treating got better, or didn't get abs bad as fast as the control group.  I have seen no such trials.

It would seem to me that merely slowing progression would be a good or worthwhile thing, but all I have ever seen is anecdotal stories of this.  Even if one had a fibrosure or fibroscan many people here would tell you that you could not rely on those.  

The number of people of people who would treat w/ LDN and have before and after biopsies would be a pretty small number I would wager.  : /

Finally, LDN is a prescription drug.  Almost any pharmacist can formulate it for you.  A doctor would need to prescribe it however, at least in the U S of A.

willy
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the only thing i can say is that most of us can't afford the healthy supplements and special care you are getting. i was never an AMA type and would gladly do some of that you are doing, (but i would combine that with some of the newer tx coming out that have no sides, short duration and in some cases 100% Und at EOT). Just waiting now on SVR to show up for those new options.

I'd love to do all you are doing while waiting- but its not in my economy. i imagine until real health care comes along we will be limited by insurance, wellness, location and many other factors.
i'd love a nice long month of TLC- everything hurts most of the time and i just grind along. from what i've heard. many people are excited about losing a lot of those symptoms after SVR. I do eat very healthy and do what i can- can't wait fro more!
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Hello, first time ever commenting. I, myself sound so much like you back in 2009. Chronic HCV genotype 1, stage 3/4 chronic liver disease, 12 week non responder of interferon/ribavirin ( it almost killed me), last v. load 6 million. I am a 48 yr old white female .
           I  was going to start the ****** protocol but the institute said I need to go to the clinic and to not start from home, can't afford the clinic at this time( still sending all of my med records and bw to see what ****** doc has to say) so found LDN. My latest doctor will not give me a script yet, only been to him once, so I have acquired some on my own. At this time the only other supplement I am doing is milk thistle. I was taking a cocktail of about 12 other supplements, vitamins and herpes but was not seeming to help.   I am eating a 90% organ diet and just started juicing. I don't do yoga or even go for walks anymore, I use to at least be able to do that.  

I just wondering how your treatment and quality of life is now of days?

Just ordered the book by Stephen Buhner " Herps for hepatitis C and the Liver"

I would like to do the IV treatments but do not know if ill be able to find a doctor right away. I have not had the best luck with  finding a good doctor. Have not been able to find a allopathic doctor yet.

I am so ready to get my healing started, my liver and my quality of life is getting worse by the day.

                                                                                Thank you
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Hello pureblueh2o,
This is a very old thread.
If you would like to start a new post you should go to the top of the page where you can find an orange button titled "Post a Question".

My HepC is undetectable after treatment but I am in terrible health from the meds and am just about to start LDN. My doc has researched it a lot (as well as contacted friends at Mayo Clinic - where they are using it for HepC P.I.S. patients) and found some good research that helps with inflammation.

As you know the issue is with getting it prescribed. I have a great pain doc who is in conference with my GP soooo hopefully they will work things out. If not (and if anyone is interested I have some links for prescribing docs as well as compounding pharmacies) I will get LDN and my doc will work with me. We will start very slow at 1.5mg and may go as high as 3mg. In my reading, as well as my docs, there is very little sides so little to lose.

Hope you find a way to get on a better path to health, f
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