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.
There is a yahoo group of hep C and B patients on LDN. Two are 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.
Dr. Berkson 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 Berkson client who has had hep c for forty years named Susie Q. She continues to do well with no interferon treatments necessary. She has been going to Dr. Berkson for ten years I believe.
Here is an interview sith Dr. Berkson in which he discusses both ALA and LDN. Very interesting read:
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.
Best wishes to everyone, whatever path they choose!
Thanks for posting your experience with the Dr Berkson protocol, I also believe in this, and I advise anyone with severe fibrosis/cirrhosis to go to him or another clinic that does this.
I myself will be doing the treatment in Nov this year, hopefully achieve SVR (second round tx, relapser, geno 3). After this, I will be seeking Dr Berkson and get my liver back to normal.
I know SuziQ, she now has a better quality of life, I thought she had only been on the protocol a couple of years now.
I dont know why the Berkson protocol hasnt been promoted around the world, or is it the simple reason that it is cheap and the government wont make any money off of it.
Can you tell me if Dr Berkson is still in Florida, and would you be able to provide an email address for me to contact him.
Dr. Berkson is in Las Cruces New Mexico. His website is www.drberkson.com
Usually when people think of the Berkson protocol they think of his triple antioxidant therapy. I think it is important to know that he also combines it with Low Dose Naltrexone to achieve fantastic results. I never reached cirhosis, but was stage 3 fibrosis five years ago. Now I'm sure I would grade out much lower, but I would never do a biopsy to prove a point.
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.
I really recommend a thorough reading of Dr. Berkson's interview above.
Dr. Berkson 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.
Good luck to you hippygem!
Ive been reading about Dr Berkson for 4 years now, and I read the interview etc.
I have posted the info on AHCS for the forum members there, but I am always looking for other info, and Dr Berksons contact details. Thankyou for the website URL.
I live in Australia, dont know if LDN is available here, will have to look into that as well.
I have been told that Dr Berkson would get in touch with a GP or specialist that someone can find to do the IV nutrients and he would guide them. So I will use the website you gave me above to contact Dr Berkson to get more details. Then I will be on the hunt to find someone in Australia to take it on.
If not, Im willing to travel to 'mexico' for this.
All the best to you and thanks.
Thanks for the update. Lookng foward to your lab results in the fall.
So nice to talk with both of you. Best of luck wherever your journeys take you.
I will update when I do my next labs. As I said I will do them in the fall just to check on things, but I am very happy that my health problems are not the guiding force of my life right now. My last five years have been a constant battle in this front, and I am now very happy to coast, make progress, continue to improve my health and enjoy my life to its fullest. I wish the same for everyone, no matter what path they take.
Thanks Mike, and I would like to wish you well on your journey too, you have achieved a lot, and your research has paid off. You are also sharing your success with others so that it will help them and that is all any of us can do.
I look forward to your updates and progress.
Well done on such a good effort. Enjoy your life.
Best wishes and warmest regards
Here are two links that might help you find an Integrative medicine MD in Australia:
Hope that helps.
That first ACAM link is bad. Here is the proper one.
Hey, thanks so much for them links, there are some listed in Australia.
You just saved me a heap of researching. :)
Very glad to be of help.
Best of luck to you,
Is LDH administrated IV only? I take the ALA, Milk Thistle, Selenium orally, but would like to add LDH as you suggest. Is it prescription only?
LDN is taken orally, one capsule in the evening. It is prescription only, so an integrative MD must prescribe it. This is not as difficult as one might think, since its safety has bee established.
The MD writes the prescription and the prescription is faxed to a compounding pharmacy. The pharmacy then sends it to you by mail. A quick point - not all compounding pharmacies are equal. For a list of certified compounding pharmacies go to www.ldninfo.org - by the way, low dose naltrexone only costs $30 per month without health insurance - even using a compounding pharmacy.
For an integrative MD in your area check out the search sites listed above.
Good luck to you.
No search under "Integrative" Physician. Any suggestions? Thanks so much for your input!!!
Here are the two search engines I was referring to:
thx for posting this I´ve been googling it and it sounds very interesting for me.
I have two friends one with severe MS hes never complaining although he hardely can´t walk it takes about an hour for him whats take me five minuts.
I saw him the other day and I asked what are you doing are you out training for the mara thats comming up very soon.
He jus laughed and thought it was funny this guy is my hero talk about high spirit.
But at the same time my heart bleeds for him since his getting worse day by day.
The other friend is a former heroin user sober more than 5 years also a very fine soul
hes got both schizophrenia and severe chrons diseases.
I read at the internet that this LDN might help them both.
I pray it will, and for me too. Although I am SVR i need something because I´m not feeling very well nor psychically or physically.
Thx agin for posting really hope it will work!!
I just happened upon this thread. I have had Hep C since 1992. The IFN did not help and brought on autoimmune disease. Now I am taking Minocin therapy to help that. It's another therapy you need an alternative doc to prescribe because everyone wants you on prednisone. This is much better. I am 1b with huge viral load. Was waiting for Vertex telepravir with IFN but reallly don't want to ever try IFN again. My liver doc says to wait ten years (stage 2 grade 2) so I can use vertex with other polymerase, protease, helicase instead of IFN.
Who treats you in AZ? My daughter lives there and we visit often. What are the sides of LDN? Any insomnia? What is the correct dosage and brands to use when trying the oral ALA route?
Great thread, thanks for the info!
I am on the road so I haven't been checking the posts.
I travel to Washington state to my doctor up there, but most integrative physicians would prescribe LDN. You could check the two search engines cited in my posts above to find an integrative physician in your area.You could also try Dr. Berkson in Las Cruces New Mexido who is not far from AZ. My doctor is Dr. Bradford Weeks on Whidby island - the best doc in the world in my opinion.
During the first week some patients dexcribe vivid dreams as a side effect - probably from all the endorphins ping-ponging around in the their brains - but those usually go away after the first week. I did not notice anything. Other than that there are no side effects.
The Crohn's clinical trial has been completed, and so has the LDN/MS clinical trial, but I believe that one has not been written up yet. Initial reports say it will report highly favorable conclusions fo use for MS, though.
For instructions on how to obtain it go to www.ldninfo.org You will find a list of approved compounding pharmacies there. The dosages usually vary between 3mg to 4.5mg.
As for ALA, people report that the R form is superior, but I don't know how much difference it makes. Oral dosage is 200mg three times a day. IV administration varies from 200mg to 600mg as often as is feasible - I do it once a week when I am on a roll.
Good luck to everyone. I encourage everyone to do the research and get active with your own program. No one, no doctor or fellow patient cares about your program as much as you do. Taking control can be liberating for your soul and your health!
Best wishes for everyone.
Hi Mike H I´m from Sweden but there are swedes geting it as LDB but its not easy to get a doc to prescribe it so some fake they are about to became alcholics and get it that way.
But then its in 50mg pills and they have to spit it in parts them selves .
Ive also heard that if you let a pharmasist mix it its urgent wich filling stuff they use,
I have read on the net ;
“Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler will interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers."
Do you know if this is the fact I´m totally new at this stuff but I go on intuition and my intution say research this!!
What made me abit concerned was that you after not been taking LDN for just som days got those swollen knuckles does that mean you have to go on this stuff every day for the rest of your life?
Talked to Dr Berksons office yesterday. Its hard to become a patient with them. They take info on your Alt, Ast, Platelets and Prothrombin and what meds you are taking. Then from what I understand the Doctor goes over it then contacts you in a couple of weeks and then you go from there. It sounds like you have to agree to a five day stay in NM as your treatment will be at least once a day. I looked up what people were saying about him on the Doctors rated web page and was impressed. Here is the web site.
This is very intersting stuff. I spoke to my cousin the other day for the first time in year (has severe MS) and he sounded horrible and I wished I had something I could say.......maybe I could email him this info.
What I'm wondering (cause I"m slow) is if this is such an easy thing to come by really why would more doctors not give it a go - what is an integrative doctor? Heck I don't have the virus anymore but I do have liver damage and am always looking for a way to get rid of all of that so itjust interests me.
Not that I could do anything about it but it's still interesting!
Naltrexone is an opioid receptor antagonist used primarily in the management of alcohol dependence and opioid dependence.
Shoot forget this for me anyway I'm already on suboxone........enough opiod receptor antagonists for me.