So I just finished reading the book "Google LDN!" Very interesting indeed.
I have had a serious misconception shattered (I didn't even know that I misunderstood auto-immune diseases like I did) and have learned some interesting things along the way. I will share in a nutshell what I've learned from the book.
1. I thought auto immune diseases meant that the immune system is overactive. I was in fact wrong. It means that the immune system is deficient and has a hard time distinguishing between
self from
non-self (which I knew), but it is not over-active like I had assumed all this time.
2. Although there is no known immune system regulator, research is showing more and more that perhaps the regulator of the immune system is the body's endorphins.
3. People with auto-immune disorders and other neurological diseases as well as some cancers and HIV/AIDS tend to have 25% or more decrease of endorphins in the blood.
4. This drug, at low doses, inhibits endorphin production during the essential hours of the night using a low dose, short term spike which in turn forces the body to create two to three times more endorphins for the following day. The increase in endorphins helps to regulate the immune system into functioning properly.
5. The drug was FDA approved for recovering drug addicts at 50mg per day, but due to unpleasant side effects at that dose doctors stopped prescribing it. It has lost it's patent with time and is now a generic drug, so there is no point in drug companies to do millions dollars worth of research for other diseases as they stand to not make any money from the findings. Nobody markets it and nobody really makes any significant money from it.
6. Because doctors are afraid of litigation they are hesitant to prescribe 'off label' meds, which would be the case in our situation. But it's perfectly legal and ethical and has the potential to eliminate a lot of pain and suffering - as we have seen with rituximab.
7. The drug is very inexpensive ($30 or so a month - quite different from our cocktail) and has literally no side effects. It said that 1 out of 50 patients might experience sleep disturbances the first week, but that inevitably goes away after a week, and besides we're all use to that with pred. It also increases the endorphins, so you're feeling pretty good to boot. There also seems to be no contradictions with our drugs, but I will double check with my doc and the pharmacist.
It is recommended that people who have had organ transplants and are on immunosupressants as well as people taking any drugs with opiates should not take this (opiate users should stop taking the drugs for two weeks before starting LDN, and organ transplant patients can offset the effects of the immunosurpressants in accepting the new organs - so that might be dangerous)
8. If you do get a prescription here are a couple of things to ask for.... make sure to ask that they
don't prescribe the 'slow release' version, as it is not effective in treating what we need treated. Also because they need to have a filler in the capsules for the low dosages (so a compounding pharmacy will need to put it together), ask that they don't use calcium as a filler as it blocks absorption. The other options are lactose or sucrose as fillers as they don't mess with the absorption.
The book I read is called 'Google LDN!' by Joseph Wouk. Book is so so, but the appendix is great. The subject matter is quite noteworthy.
How's that for blah blah blah. I'm going to look into it further in the next couple of weeks. If it can't hurt and can make you feel better and might be able to help with the disease, why not???
http://www.ldners.org/resources.htm
http://www.lowdosenaltrexone.org/
