Update on My Low-Dose Naltrexone Treatment

I'm way, way overdo on this one! Lots of people have been asking me whether I'm still on low-dose naltrexone (LDN) and whether it still helps me. Looking back, my last update on LDN was April 2008, almost 2 years ago! If you're not familiar with LDN, I'd encourage you to read that post as well as this one.

Naltrexone is a drug that has been around for decades, approved by the FDA for use in treating alcoholism and drug addiction. Yes, I know this sounds strange so far! Naltrexone works by modifying the endorphin response in the brain. A couple of doctors discovered that naltrexone, when used in tiny doses, is an effective treatment for all sorts of immune system disorders, including MS, lupus, Crohn's disease, AIDS, and cancer. In very basic terms, the endorphin response causes a whole cascade of positive effects in the brain that help to normalize the immune system. All of this is explained in much greater detail (and much more effectively!) at the low-dose naltrexone website (the website is created and maintained for information purposes only by the doctors who pioneered the use of LDN and is not a commercial site). The results of studies using LDN in various immune system disorders have been amazing.

There have still been no official studies conducted of LDN and CFS (big shock, huh?), but we have a dysfunctional immune system, too, and it does seem to help some people with CFS, including me. There has been a small, pilot study at Stanford on using LDN for fibromyalgia, with excellent results.

As for me, I took LDN for 3 months in 2007 and got worse again when I went off it. In January 2008, I asked my doctor if I could go back on it, and I've been taking it ever since - two years now! As I explained in my earlier post on LDN, this is the only treatment in 8 years of CFS that has helped me significantly. During that same time period, I've also been on anti-virals - first Valtrex and now Famvir (I tried Valcyte earlier but had some serious side effects and had to stop - it's a very toxic drug). From what I've read, anti-virals and LDN work well together, though you can take either separately.

If you're a regular reader of my blog, you know that this past year was rough for me, especially the last six months. So, perhaps you're wondering - as I was - whether the LDN is still helping me. I got the answer to that in December when I ran out for a couple of days...I was worse without it and improved again when I went back on. My lengthy relapse has been due to my recent Lyme infection and treatment, plus exposure to various viruses this fall and winter, and I guess I would have been in even worse shape without the LDN.

I've talked to many other people with CFS who've tried LDN and have heard a wide variety of stories. Some, like me, have improved on LDN. Often, however, I hear from people with CFS who aren't able to tolerate LDN at its regular doses, just as many people with CFS are extra-sensitive to other medications. So, for most people with CFS, it is best to start out with a very low dose of 1 mg (or even 0.5 mg) per day. If it is tolerated, then you can raise the dose gradually. Unfortunately, some people with CFS can't tolerate it even at 1 mg. Typical side effects are vivid dreams and/or disrupted sleep. For most people, these effects go away after a week or two (I didn't have them at all). It's best taken before bedtime (the LDN website explains why).

Most people take low-dose naltrexone in a 3 mg dose. The LDN website says that 4.5 mg is the "optimum dose" for many people with auto-immune disease. I started at 3 mg and have stayed at that dose for 2 years because it works well for me. I tried going up to 4.5 mg and all of my CFS symptoms flared-up for the entire 10 days at that dose. I went back to 3 mg and felt good again.

I know of some people with CFS who have found that 2 mg or even 1.5 mg is their best dose. It takes some trial and error (with your doctor's help, of course).

You need a doctor's prescription for low-dose naltrexone. Not all doctors are willing to prescribe it because this is a relatively new development and an off-label use. Try sharing the information at the LDN website with your doctor. My regular family doctor won't prescribe it long-term and and my sons' pediatrician feels it's too new to try for my sons, so I get mine through my Infectious Disease specialist in NYC (she specializes in CFS).

Since regular naltrexone comes in 50 mg pills, you have to get LDN from a compounding pharmacy. They can provide either liquid or capsules in the dose you need. There are local compounding pharmacies in most areas, and the LDN website lists several that will ship LDN to you. I started out using my local compounder, but they could only supply me with the liquid form (which wasn't very convenient for travel). I now use Skip's Pharmacy in Florida - they're one of the ones listed at the LDN website. They have a lot of experience with LDN and are easy to work with. Just plan ahead for your refills, so you don't run out like I did!

Well, I guess that covers the basics. If you're interested in learning more, please read the LDN website. It is very, very informative. Anyone else out there using LDN or tried it?