UPDATE 2013 LDN DOSING - WHY 3 MG LDN MIGHT BE BEST -
Treating Hepatitis C with Low Dose Naltrexone (LDN)
UPDATE - JUNE 2014 -The original post below was written back in 2010 but I have since edited it to reflect the newer research regarding using the lowest dose possible of LDN.
Please also see: Why 3 mg Low Dose Naltrexone Might Be Best
After being on 3mg Low Dose Naltrexone for 5 years now, my HCV viral load still remains low and my liver enzymes are still normal. And even though I imagine that in the next year or so, I will do the newest non-interferon treatment - minus the ribavirin, I still plan on taking Low Dose Naltrexone for the rest of my life - virus or no virus. Meanwhile, now that a possible real cure for HCV has come along, most folks cannot afford it at this time. So the best bet is to take Low Dose Naltrexone, use good quality supplements that help support one's liver and immune system and to eat as healthily as possible. A paleo type diet and one that does not involve grains or any kind, particularly wheat.
I am successfully managing my Hepatitis C virus by using LDN - Low Dose Naltrexone, supplements, diet and exercise and have attempted to share my experiences on my blog, Nola Hepper. Now, I have tried to include all of this information in one place.
I was diagnosed in 2002 with Hepatitis C, genotype 1b. A biopsy revealed minor inflammation with Grade 0-1, Stage 0-1 and my lab work showed slightly elevated liver enzymes. Despite being urged to due interferon/ribavirin treatment back then, I chose to make healthy life style changes instead while waiting for "something else" to come along and learned as much as I could about the HCV virus. My health remained about the same for several years until 2005, when my Hurricane Katrina experience caused me to start having severe side effects. I developed fibromyalgia, shingles, severe chemical sensitivities and terrible IBD. My doctors told me that all of these problems were being caused by the Hep C and again urged me to do treatment.
I was able to get Social Security disability and Medicare and this allowed me to see a very good integrative doctor. She tested me for everything and suggested a course of action for me, which included several new supplements and diet changes. She also gave me a paper written by Dr. Burt Berkson, another integrative doctor who had done extensive work using ALA - Alpha-Lipoic-Acid. His work seemed very promising, so I began to do his protocol of ALA, Milk Thistle (although I had already been taking milk thistle for years), Selenium, and B Complex along with the other supplements that my doctor had recommended for me.
One of the diet changes that my doctor mentioned was to cut down or eliminate wheat - she said that most people cannot really digest it or are sensitive to it. I was a bit skeptical but after researching it, I decided to try it out. And the results were amazing! Within days it seemed that my IBD and bloating had greatly improved. Soon, I noticed that my fibromyalgia had gotten much better as had my chemical sensitivities - I didn't' seem to be quite so sensitive to smells anymore - and you must understand. It had been to the point where going to the grocery was an ordeal - I had to hold my breath going down the detergent or bug spray aisles. This also was much improved! Gluten (one of the proteins found in wheat) is a big problem to most folks with liver disease, particularly those who undergo interferon treatment, as it is a known trigger for celiac disease and can cause elevated liver enzymes.
After researching more about diet and nutrition, which included an appointment with a Certified Clinical Nutritionist, I took things a step further and ordered a food sensitivity/intolerance panel through a company called Alletess as they took my Medicare insurance. This test revealed that I had sensitivities to cow's milk, yeast and some shellfish. Upon eliminating these foods, my IBD really seemed to completely go away and my other health issues got much better as well.
However, my latest liver lab work (January 2009) was frustrating - my HCV viral load test was 1,400,000 - ALT was 174 and AST at 105 - other labs were pretty much in the normal range with a few blips here and there. I had exchange emails with a couple of folks who had seen Dr. Berkson and they said that they liked him and were seeing great improvements in their health - they also mentioned that he had put them both on Low Dose Naltrexone or LDN. So I decided to go out to New Mexico to see him myself.
I started on 3 mg. of LDN in mid-February 2009 while at Dr. Berkson's clinic but after I got back, I started having an upset stomach due to the lactose filler that the pharmacy in New Mexico used in their compounding mixture. I went off of the LDN for about 2 weeks until I got a new prescription mixed with acidophilus - probably March 1st, 2009. I had new labs done in late April 2009 and the results were remarkable. Viral load dropped from the 1,400,000 to 48,000! ALT from 174 to 22 and AST from 105 to 30!. My integrative doctor was amazed as I was but my traditional gastro actually yelled at me, saying that LDN was not "supposed" to treat Hepatitis C and that the labs had to be a mistake. I've never gone back to him.
This is about the time that I became an advocate for LDN and started posting more on my blog and on several LDN yahoo groups and various Hepatitis C, health sites, etc. How could I not with the results that I have had? Since that time, I have played around with the LDN dosage and have used my lab results as a kind of rough guide in doing so. Currently I am back on 3 mg. that I take most every night. My May 2010 lab work showed a viral load of 11,400 - ALT at 25; AST at 30. (note - 2014 LDN dosage is 3mg taken every other night or every third night)
Ideally, it is best to work with a doctor who is familiar with the workings of LDN and who can prescribe it. And to get the LDN from a reputable compounding pharmacy such as Skip's Pharmacy. However, one can also order the 50 mg. tablets and make the solution themselves without a prescription.
If you already have a prescription for LDN, it is probably in a capsule form. If you want to start off at a different dose than whatever your prescription is for, it is better to mix the LDN with water than to simply take a third or half of the capsule alone. The reason being is that one can never be sure where the LDN is in the capsule and if you mix it with water, it is a more accurate dose. For example, I take my 3 mg. capsule and dump it into a dark colored vial (I got a 12 ml (cc) vial at Whole Foods for a couple of bucks). Use a 1 cc (ml) or 3 cc (mg.) syringe and measure in 3 ml. of distilled or bottled water - not tap water. Measure out the needed dose and store the rest in the fridge. For 4.5, simply increase to 4.5 cc's (ml's) of water.
There are slightly different instructions for the 50 mg. tablet but it is the same principal - 50 cc's (ml's) of water mixed with the tablet - obviously you would need a vial large enough for that amount - more detailed instructions are included in one of the links above or here: "How to Obtain Low Dose Naltrexone"
"Once you have a supply of 50 mg Naltrexone tablets, you can convert them as needed to LDN. To do so, fill a graduated cylinder with 50 ml of distilled water (unlike tap or spring water, distilled water contains no impurities that could potentially react with and thus reduce Naltrexone's effectiveness). Pour the water from the graduate into a 4 oz amber glass jar with a tight-fitting lid. Then add a 50 mg Naltrexone tablet. The tablet will mostly dissolve in about five to ten minutes. Since not all of the tablet is soluble in water, instead of yielding a clear solution, the result will be a cloudy suspension. It must be shaken each time before use to evenly disperse all the undissolved particles. One ml of the (shaken) suspension will contain one mg of Naltrexone. Use a graduated baby medicine dropper to measure out the dose you need."
Dosing is very individualized. I am finding that the biggest mistake that doctors are making with LDN is to prescribe the 4.5 dosage in the beginning, particularly to their patients with liver disease - some folks can tolerate this dosage, but in most it is a guarantee of initial side effects - sleep disorders being the most frequent. There are different theories on dosing, depending on what doctor or researcher you listen to. Dr. Berkson starts everyone off at 3 mg. but he prescribes sleep medications in the first month to counteract these sleep problems. Most savvy doctors and LDN veterans know to recommend that people start off at a very low dose such as 1 mg. Start at 1 mg. and stay on it for a week or so then move up to 1.5 or 2 for another week or so until you get to 3 mg. At this point, you can either work your way up to 4.5 or stay at the 3 mg. dosage until you get your first post LDN labs done. Again, dosing is very individual - up to that person's make up, medical problems, etc. - some folks do well on 3 mg and have great results while others need more or less of the Low Dose Naltrexone - some folks take it every other night or less. It really depends greatly on what disorder or multiple disorders the person has along with other factors.
Why LDN might not work - According to several sites and personal accounts, yeast infections seem to be triggered or made worse when first starting LDN. It is very important to have any candida, or other mold/yeast problems cleared up as having them can interfere with how well the LDN works.
The link below covers this as well as other side effects - note - the site was written by someone with MS, but it is still good info:
Side Effects & Dosing of Low Dose Naltrexone (LDN)
Dr. McCandless ( Children with Starving Brains ) has written about the dietary aspect when using LDN:
Dr McCandless, seldom is LDN stand-alone treatment
There is much more LDN info on other sites:
LDNers.org site - Resouces page
I have covered supplements in another area of the blog - Supplements
a quick recap. The most important supplements for the liver are those that help generate more glutathione, - usually ALA - alpha-lipoic-acid, with NAC - N-acetyl cysteine, SAMe, whey protein (gluten-free) and others.
Silymarin (Milk Thistle) is extremely important as is Vitamin D3. Most folks are very deficient in Vitamin D3, particularly in those with HCV. A multi vitamin without iron! (capsule form is best and more easily absorbed than tablet), vitamins C & E.
One of the most critical things is to keep one's ferritin levels below 100. Ferritin is basically the iron storage in the liver - and it is the iron that does all of the damage!!! Not the HCV virus as most docs and literature would have one believe. See Iron Ferritin and the Liver for more.