Low Dose Naltrexone for Hepatitis C

Have you tried LDN for hep C?
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yes - just started - 0.0%
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I have heard of it - 100.0%
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I have never heard of it - 0.0%

 
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sagewoman
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/9/2009 7:11 AM (GMT -7)   
Hi everyone, I am new to the board. I originally wrote this in reply to Lucky Dog, a forum member who wrote last week about using LDN for his Hep C, and the great results he was getting in lowering his liver enzymes and viral load. That is why this post is written in the way it is:

I just found out about LDN for Hep C (I am 1A also). I have never used any meds, herbs and supplements only. I am a clinical herbalist, and I have several clients who are hep C and B positive. They are all doing well. I am not doing so well. After 3 years on herbs my liver enzymes (140/177) are still not stabilized and now my platelets are below normal, after slowing falling for the past 3 years. My GGT was a little above normal in my last lab values.

Anyway, after researching LDN for the past 3 weeks, I have decided to try it. I also found a doc in a nearby town who prescribes it and also ALA intravenously, but I am planning on trying just the LDN first, added to my current program. My doc appt is this coming Thurs, and I might be able to pick up the prescription that day and try it that night. So I will have my first experience with it this coming Friday.

My colleages tell me their experiences with it (anecdotal - from clients) has been less than exciting, but I am guessing and hoping that they did not have quality product, manufactured with the right filler, so therefore it was not a fast-release product. I am planning on using a local pharmacy that has a steller reputation. Plus the pharmacist is the husband of one of my clients, so I think I am set there. I am hoping this will be an answer for me. Do you use ALA? Do you get it from Metabolic Maintenance?

I am glad to have someone to talk to about LDN for Hep C, because there is very little out there. I have been in touch with, the author of a book on LDN (nothing in there about Hep) who has been supportive. Frankly I did not tell her that it was I that had Hep C. I am still dealing with the stigma. I have told close friends and a few of my employees, and my mother (and supportive hubby of course!)

Good to "talk" with you!

Post Edited By Moderator (Pink Grandma) : 7/20/2009 9:56:08 AM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/9/2009 7:45 AM (GMT -7)   
Welcome (again) to the forum, Sagewoman.  I am glad that you started your own post, as I suggested.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 3/10/2009 3:20 AM (GMT -7)   
Sagewoman

Just wanted to add my welcome to the forum. I don't have any information regarding LND, but I wish you luck it it working to help stablilize your levels and eleviating the problems that can cause with any liver disease. Keep us posted on how it works for you.

Lucy

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/17/2009 9:38 AM (GMT -7)   
Sagewoman
I do wish you all the best in this new approach you have decided to take

PLZ do keep us posted

LYN
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

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jill in ca
New Member


Date Joined Oct 2008
Total Posts : 19
   Posted 3/31/2009 2:07 PM (GMT -7)   
I am glad to see someone is talking about the LDN.  I have just started it for Crohns Disease.  I have a friend who is a pharmacist who found the research and used it for herself for Hoshimoto's Disease.  It sounds like the research is all trending toward helping ALL immuno related diseases.  Just a word of hope, she was only on it for five weeks and was able to stop taking thyroid medication.  Its worth the time and the research.  I don't have a lot to say about it so far, but its definately better than some of the other alternatives.  Good Luck!
Diagnosed with CD in 2004.  Currently taking Pentasa, Entocort, probiotics, fish oil, ultra inflamx powder.  Dairy and wheat free diet.  Only struggling now with fevers, everyday!  No surgeries yet.  Tried Mp6-gave me joint pain/tried remicade-gave me pneumonia


justducky
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/30/2009 11:05 AM (GMT -7)   
Hi, I'm brand new to this site. I am 62 years old.

I was diagnosed with hep C about 15 years ago. It was a shock. I really don't know where I picked it up but I have some ideas concerning my life-style when I was in my early 20s. God knows. One doc said it was common for young men returning from Viet Nam to bring it with them. Just an idea.

Anyway, I have taken several approaches to this disease. First, my therapies were concerned with just keeping my enzyme levels up and staying as healthy as possible through supplements and a very vigorous diet prescribed by a naturopathic doctor along with weekly intravenous dosages of vitamins. That routine became tedious and expensive so I quit and have tried to just eat right, exercise well and do a lot of research about supplements. I am currently taking a lot of supplements!!

I recently visited a new doctor at Kaiser Permanente that I was referred to by my GP for follow-up liver care. I went because it had been so long since I had talked to a conventional doctor and besides, like everyone else we're running out of money and the Kaiser thing is paid for (big time) every month. This doc gave me the same ol' same ol' lecture about doing the interferon thing along with something called ribo...something, can't remember. He also recommended the obligatory liver biopsy. I walked out feeling run over.

The real crazy thing is that all my blood tests look good; even my platelet count is up in the normal range now. Yes, my enzyme count isn't like a person who doesn't have hep C, but it's not terrible and seems to be maintaining. I think the way I eat and the supplements I take really help a lot. BUT, I still have the virus.

I just hear about LDN and so I wrote my liver doc to say that I would like to look into it.
Here's my concern. If he does seem interested in the LDN therapy, how do I know that he is doing it right? How do I know if it is the best or correct type of LDN. I know from my research on supplements that there are different levels of effectiveness and even some types are toxic. Would this be the same case with LDN? Are there good types and bad types?

I would appreciate any help I can get

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/30/2009 12:57 PM (GMT -7)   

Justducky, welcome to the forum.  You can Google info on LDN.  I meant to discuss this with my hepatologist on my last visit, but because there were problems with getting the CT scan done, and she is booked up months in advance, I never did see her...just got the results over the phone.  I was diagnosed with hep C in '93 and also have survived liver cancer (2 years cancer free now.)

Since LDN is by prescription, I imagine if your doctor is willing to give it a try with you that there is very specific dosing information.  Unlike supplements, it is approved by the FDA, meaning that there is a standard applied to it in terms of quality and recommended dosing.  If your doctor is willing to prescribe this, then he will have looked into it and know what to do--or will do so.  You'll have to trust him or another hepatologist on this. 

The "combo" is interferon and ribovirin.  That's the standard treatment now.  However, now in trials and expected to be available in 2010 is that combo plus a 3rd drug, telaprevir, in which the combination only has to be taken for 24 weeks instead of 48.  A recent study at Duke using all three drugs, cured 67%.  The bad news is that while it cured more people than the regular combo, many more had to drop out due to side effects.

 


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


justducky
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/30/2009 1:39 PM (GMT -7)   
My gastroenterologist wrote back to say that there wasn't enough...here, I'll just paste his response:

Of the 6500 articles on naltraxone and naltrexone in my medical data base, evidence based, its only use in liver disease is for itching in the setting of a liver condition called primary sclerosing cholangitis (PSC) and this is one article out of 6500. Not a strong data set for its use. There are no articles on the TREATMENT of hepatitis C, that I found. There are several from journals like "Hypothesis", suggesting this might help, ie they are guessing, no data. Some mouse and rat studies.

Unless there is some study that you could participate in (not part of your regular care, not that I am aware of), there is no role for this class of drug in the setting of this condition, until there is some proof that it helps and is safe to use.

I see many people who bond to unknown treatments of unknown effect while bypassing known effective treatments.

In the area of "first do no harm", it would be wrong to use this class of drug at this time.

I am open/happy to treat you. I am open/happy to get you to a second opinion if you have doubts/concerns. You are doing well at this time. My goal is to try to prevent future illness. I am of the opinion you would benefit from treatment from standard therapy. I am of the opinion that liver biopsy would help you to sort this out. It is your body/life and I defer and await what your desires are.

See, same old stuff. Should I get a second opinion from a Kaiser doc or should I go to a naturopath? Is it true that this disease will just make me very sick in the future (I have no symptoms yet) and that there is, according to this doc, a window of opportunity that if I miss I'll be beyond doing much for? This is the fear tactic he presented me with.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/30/2009 4:36 PM (GMT -7)   

Well, I can agree that there hasn't been enough study of LDN yet and that it isn't in common use.  It's up to you as to whether you want to get a second opinion.

I can tell you my personal story:  I started interferon (the only treatment available at that time) shortly after I was diagnosed with hep C.  I was on it for about 6 or 7 wks., but my white count plummeted so low that I was taken off of it.  The doctor first tried reducing the dosage, but it made no difference.  A couple of months later, with a different doctor, I went on it again.  Same thing happened, and after about 4 weeks I took myself off of it.  From that point to the present, I had no treatment at all.  However, because of the fatigue, I was only able to work P/T from '94 to 2005, when I finally was approved for SSD.  In 2005, I was diagnosed with liver cancer.  This is a possible consequence of hep C left untreated.  I went to Mayo, and thanks to their treatment and surgery, I have been cancer free for 2 yrs.  I do have cirrhosis.  I'm at the point of trying to decide if I want treatment.  I'm sort of holding out for the new one that I spoke about in my previous post.  I know that my hepatologist is also on the lookout for trials for me that she thinks might suit my diagnosis and present status.

Left untreated, your chance is high of the hep C causing cirrhosis and/or liver cancer and progressing to end-stage liver failure.  However, with the good diet that you are on and the supplements that seem to be helping you, the progression can definitely be slowed down.  I'm currently just treating with diet and lots of rest.  BTW, I'm now 66.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


justducky
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/30/2009 4:54 PM (GMT -7)   
thank you for responding. You have been helpful. It's just good to talk to somebody. I may have to go through with the chemical therapy. I'm scared because I've had issues with depression and doc says depression is a very possible side effects. First I'm going to try some other routes for a few months, at least until my next blood tests and see what happens. I'll let you know how it goes.
Sorry that you've been through so much. Congratulations on kicking the cancer. Did you have chemo? Did they remove just the tumor or some of your liver as well?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/30/2009 6:18 PM (GMT -7)   
Lucky, regular chemo doesn't work on liver cancer.  That's why it's more or less a death sentence.  I had a HUGE tumor in the rt. lobe that had grown into the inferior vena cava, making it inoperable.  So after Shands gave up on me, I went to Mayo.  I first had chemoembolization, in which the blood vessels feeding the tumor are cut off.  This caused the tumor to shrink out of the IVC into the main tumor and for the main tumor to also shrink some.  A couple of months after that, I had a study drug, TheraSphere, which is actually microscopic beads of radiation, which were directed into the tumor through my groin via a catheter.  This killed the tumor, but also the rt. lobe, which was ultimately removed.  I didn't need any followup treatment other than blood work and CT scans/MRIs every 3-4 mos. to keep an eye on what's left of my liver and also my lungs and pelvis, to try and catch a possible recurrence early.

BTW, if you are concerned about depression during treatment, you can take antidepressants (if you're not currently taking them) or add to what you are already taking (if you are.)  My doctor told me that they now have medications for all the side effects of treatment.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 5/30/2009 7:35:45 PM (GMT-6)


luckydog53
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 7/19/2009 10:13 AM (GMT -7)   
Hi everyone, I am so sorry that I missed this thread - I am not on this board often.

A quick synopsis of my use of Low Dose Naltrexone for hepatitis c:

There is a yahoo group of hep C and B patients on LDN. Four results are posted for Hep C Patients. Two are at stage four cirhosis. They both had >5 million VL when they started LDN. Three months later one was at 632 thousand and the other at 980 thousand. Another went from 1.28 million pre LDN to 49 thousand three months post LDN and I went from 1.6 million to 58 thousand three months post LDN and 219 thousand 8 months post LDN. All experienced large drops in AST/ALT. We are compiling a database and sending the results to Dr. Jill Smith of the Hershey medical center who did the phase 1 clinicals on LDN and Crohn's disease (2/3 in total remission in 3 weeks on LDN). She is interested in doing a pilot study of LDN on hep c patients.

I haven't had my labs done recently, but I plan to in the fall. I do feel that things are progressing well. In September I will have been on LDN (Low Dose Naltrexone) for 12 months and I feel like I keep getting better every month. A few weeks ago I went on a trip and forgot to bring my LDN! I went three days without it and by the time I got back my knuckles had swelled up and split and my rash had come back- both were of which were SX from interferon treatment five years ago. They went away as soon as I got back on LDN. I believe they are autoimmune sx conditions, so no wonder that LDN works to keep them at bay.

Dr. has been using a combination of LDN and IV alpha lipoic acid for his hep c patients for a long time with very good results. My doctor is not Dr. Berkson, but Dr. Weeks of Washington state and he uses both LDN and IV lipoic acid, plus IV phosphatidylcholine, glutathione, human placenta extract, B complex, Folic acid, B12 and megadose vitamin C. He also has me on a bunch of oral supplements.

One of the members of the yahoo group is a lady in her 70's who is a client who has had hep c for forty years named SuziQ. She used to post on this board and may still be doing so. She continues to do well with no interferon treatments necessary. She has been going to Dr. for ten years I believe.

My physical shape, energy and mental acuity is much improved and seems to get better all the time. So much so that I am starting a new company and going back to work! I look and feel very healthy, which is a big change from the last five years. Six months after interferon treatment my viral load was over 7 million, and my immune system was destroyed. Now, with my viral load decreased, my doctor's strategy is to keep the viral load depressed and to rebuild my liver in the absence of the viral load and inflammation. Everything I feel and see on my labs indicate that the strategy is working. All my labs are improving in platelets, clotting times, GGT, liver functions tests, hemo panel, etc.

By the way, I am a certified medical technologist, so I know about lab tests, but more importantly, I know how I feel. One of the best areas of improvement has been emotional well-being and mental acuity. I really appreciate those improvements because it makes me a better husband and father.

Low Dose Naltrexone is what is keeping my viral load in the very low range. The IV nutrients I mentioned above are helping to reduce the fibrosis, rebuild liver cells, and keep them healthy and infection-free. I feel like I am traveling backwards in time on the lifeline of my liver, and I couldn't be happier with my results. Like many people here I experienced severe SX from interferon and permanent damage afterward. I know for sure I will never do a second course of interferon, and I believe that it is not necessary to try it again - but that's just me. Everyone has to paddle his own canoe.
is not the only one prescribing low dose naltrexone. Any doctor can. Most integrative medical doctors probably will prescribe it. And since it has been FDA approved for twenty years and used in the field extensively in megadose amounts, its safety has been well established by the most stringent FDA standards. No side effects, and costs only $30 per month without health insurance - the only possible downside is that it may not cure your incurable disease. People are using it for cancer, Crohn's, MS, fibromyalgia, autism, and all other autoimmune diseases.

For hep c LDN will not eradicate the virus, but it will reduce the viral load levels and inflammation drastically and keep them there. Meanwhile, many naturopaths do the IV lipoic acid treatments - they do not have to be MDs to do so. They also routinely administer the other IV nutrients that I take. Phosphatidylcholine is very important to reduce fibrosis.

I would suggest LDN for anyone who is not presently on interferon, especially people who have tried interferon and did not achieve SVR, as was my case. I would also use it for recurring SX from treatment even if I did achieve SVR, and I would certainly use it if I was not doing treatment and waiting for something better to be developed in the conventional drug world. At least it would help your liver in the meantime, and over time it might make conventional treatment unneccessary.

It is interesting that the doctor in one of the posts above cited the maxim, "First do no harm". Naltrexone has been FDA approved and has a twenty year history of use in the field in megadose amounts - 50 mg, in contrast to the 2-4.5 mg dose of low dose naltrexone. In studies, naltrexone has been shown to be hepatoprotective in large doses. Therefore its safety has been established by the most stringent FDA standards. While he is correct that its use (and therefore efficacy) has not been studied for hepatitis c, the practice of off-label use for prescription drugs applies to a major percentage of all prescriptions now being written, I believe.

One more point - low dose naltrexone has been used for acute crohn;s disease for ten years. FDA clinical trials were not performed until last year. In the clinical trials, 2/3 of the patients went into remission in just three weeks. I'm quite sure that all of the crohn's patients who found relief with LDN over those ten years are very happy not to have had their bowels resected and/or put on steroid antiinflammatories, even in the absence of clinical trials. Interestingly, even though LDN clinical trials have established its efficacy for crohn's, it is still not widely used.


Best wishes to everyone, whatever path they choose!

Mike h

Post Edited By Moderator (Pink Grandma) : 8/8/2009 11:41:16 AM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/19/2009 11:04 AM (GMT -7)   
Mike, I am glad that LDN is working for you.  However, you give me the impression that this must be taken for a lifetime.  Is this the case?  Also, please be cautious about using the abbreviation of sx or SX for "side effects."  In the medical field, sx is used for "signs" and/or "symptoms" and that is really a different meaning than side effects.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 7/19/2009 4:38:33 PM (GMT-6)


luckydog53
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 7/19/2009 11:25 AM (GMT -7)   
Hi hep93,

Sorry about the incorrect abbreviation.

Since it is unlikely that LDN will eradicate the virus, then, yes, I assume that I will be on it for my lifetime. The strategy is to make the virus irrelevant; we live with many viruses that do not decrease quality of life or health. I think the good part of long term LDN use is that it may prove to be preventive for a variety of other conditions, including cancer. Optimized immune function is a good thing for a variety of reasons, I believe.

Cheers,

Mike H
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