LDN advice

Naltrexone is given in high doses to reverse the effects of opiates (morphine, heroin). But anecdotal evidence that is now being researched has found that at low doses, it significantly helps MS relapses and reduces progression of MS as well as Chron's and other diseases. Fortunately, it's not been patented and remains very inexpensive but unfortunately, that also means there is less incentive for clinical trials, which still haven't been done.

When my LLMD proposed LDN, I did many searches on Google to understand it and found quite a bit of info—here are a couple of interesting websites, for starters:

www.lowdosenaltrexone.org/ldn_and_ms.htm
www.ncbi.nlm.nih.gov/pubmed/15694688

This is a comment made on a UK article about LDN from July, which I thought was EXCELLENT:
"LDN is a ‘cell growth regulator’ and what we are now understanding by taking LDN is that we are taking advantage of the body’s own chemistry and discovering a new biological pathway that has been shown to be effective in the treatment of MS (and complications thereof). The biological pathway is the Opioid Growth Factor (OGF) – OGF receptor (OGF-OGFr axis).

Blockade of the interaction between OGF and its receptor OGFr for 4-6 hours using LDN inhibits and controls cell proliferation and growth/activity of cells, specifically astrocytes, microglia/macrophages, inflammatory T and B lymphocytes when the opioid antagonist is no longer present (18-20 hours).

By modulating the OGF-OGFr axis, we are prolonging periods of remission and diminishing the number and length of disease relapses. Pre-clinical studies have shown that areas of demyelination and neuronal damage are markedly reduced.

As the benefits from taking LDN come from the ‘rebound effect’ (the rebound effect is what happens when the drug you have taken clears your system providing you with the benefits of its actions), it is going to be extremely difficult to conduct a proper clinical trial (double blind cross over). As shown in Dr Gironi’s clinical trial in Italy, the effects from taking LDN for six months continued as the increased levels of beta endorphin continued to rise even after stopping LDN for one month.

Conducting long term clinical trials is going to be difficult for reasons you have outlined in your blog and because of the novel way LDN works through rebound effect. We know it’s safe, well tolerated and the fact it is nontoxic, inexpensive and can be delivered orally is very attractive to people living with such a chronic progressive disease where most of the alternatives are medications via injection with potential serious side effects.

The key to LDN’s success is dosing and this is where I see the downfall in the clinical trials so far – all taking 4.5mg at night. After two decades of patients using LDN, it is now understood that 4.5mg is too high for a lot of people with MS (3mg being a more manageable dose especially for those who are living with terrible spasms), and that LDN interferes with many people’s sleep hence the dropout rate in these trials. For this reason (lack of sleep) many are now taking LDN in the morning very successfully. We also now know that after taking LDN for a couple of years, your body is able to start producing sufficient endorphins, enkephalins and receptors with very little help from LDN so there is no need to take as much LDN or as frequently. However further studies/trials are very much needed to get more answers to determine how to successfully use LDN long term."
multiple-sclerosis-research.blogspot.com/2014/07/low-dose-naltrexone-for-treatment-of.html

I started dosing at 1.5g months ago and titrated up to 4g, which I've been on for 4 months or so. I IMMEDIATELY notice if I forget to take it—the painful muscle stabbing and spasms and aches come right back. So it has been very successful for me. But working around the sleeping issue took some experimentation. LDN is designed to be most effective during the 1-3am sleep cycle, which means it's generally taken at 11pm or so. At first, while your body is becoming accustomed to it, you can have trouble falling or staying asleep. But if you can be patient, this will resolve itself. I've had a couple of start/stop cycles and when I resume I have had to start taking it much earlier in the evening to start with, and then take it a little later each subsequent evening until I can tolerate it at 11pm.

Now, I have absolutely no issues and I'm so grateful for something that works. It costs about $29 at my local compounding pharmacy and about twice that at a CVS chain.

-p

Hi Sarah—

I, too, had strange and painful reactions when I first started taking it. But in my research about dosing, I read several recommendations to stick with it and slowly increase the dosing. And like many others, the pain subsided. But it took a couple weeks. Maybe when you feel up to it you can try taking it again?

-p

Usedtogarden…
I was in the same situation—I wasn't sleeping at all and was sicker than a dog when I first started treatment (I had 4 different viruses). But I hadn't come across a whole lot of concern over immune system suppression. And now, after finally getting accustomed to LDN, I wouldn't trade it for anything—it brings such complete relief in some cases to my neurological symptoms. For the most part I am sleeping at least 7 straight hours every night. It took awhile to work up to that but in the end, it was worth the struggle.

-p