For over a month now, I've been promising to write about a new treatment that has helped me considerably. Two things delayed me. First, I wanted to be sure I had all the facts straight before telling others about it. Second, about the time I felt ready to write about the treatment, I went through a period of not feeling quite so good anymore,and I wanted to make sure my earlier improvement wasn't just a coincidence. In any case, I'm finally ready to share my experiences and provide some information.
If you follow my blog regularly, you might recall that I tried 3 months of low-dose naltrexone last fall. I felt pretty good during those three months but wasn't sure whether it was due to the naltrexone. After that 3-month period, I had two terrible months with some very severe crashes. So, when we got back from our holiday family visits, I asked my doctor if I could go back on the naltrexone since it seemed to have helped. She told me that she's had similar feedback from other CFS patients and was fine with me going back on it, so she sent me a new prescription.
From January 1 through March 13, I had eleven good weeks, with only a single severe crash day the entire time. I track how I feel each day using a simple 1 - 5 scale, with 1 being great (almost normal) and 5 being severely crashed, unable to do anything but lie down and rest. For the past six years since becoming ill in March 2002, my average has pretty much stayed the same, between 2.6 and 2.9 (obviously there are good days and bad ones, but the annual average has stayed fairly constant). In January this year, my average was 2.1, and in February it was 1.7 - one of my best months ever.
Most evident to me was an increase in overall energy. I had more days when I felt like my old self. There was a clarity to my thinking that I hadn't even realized I was missing. I rarely had a sore throat, and, when I did, it was mild and didn't last long. I was able to start exercising regularly - nothing too heavy, but I could take almost daily walks and began some light weights.
I want to stress, though, that this is not a cure. I can certainly still tell I have CFIDS. I still need lots of sleep at night, still need my afternoon nap, and still have to be careful not to overdo. But within those limitations, my quality of life is much improved, and I'm able to do more. I got through our annual Mardi Gras party without crashing afterward. I attended a day-long writer's conference for the first time since beginning my writing career.
After seeing such improvement, I did some research on the internet and was pleasantly surprised to find an entire website devoted to the use of low-dose naltrexone (LDN) for immune system illnesses of all types. It's being used with great results for MS, Crohn's, AIDS, and cancer, with several studies to back up the results. There's a new study currently being conducted at Stanford on using LDN for fibromyalgia (that study is still recruiting patients). As is typical, there are no formal studies yet on CFS, but the website's description of how LDN works makes complete sense for CFS's immune system dysregulation.
Since mid-March, I haven't felt quite so spectacular (which is why I waited to talk about it). I now think a couple of factors are behind that. I started out on 3 mg of naltrexone which I got in a liquid form from a local compounding pharmacy (Naltrexone comes in 50 mg pills, so it has to be compounded to the low-dose form). After reading on the website that 4.5 mg is the optimum dose for most people, I switched to the higher dose in pill form, obtained from a recommended pharmacy at the website. For the next ten days, I had a sore throat almost every day and several crash days. I spoke with the pharmacy, and they suggested I go back to the 3 mg dose. I did that on March 20 and have felt better again. I also felt somewhat poorly this week, but my husband has also been feeling bad, so I suspect there's a virus floating around that has affected my immune system. Still, I never felt completely crashed this week. I had a mild sore throat, some aches in my legs but was still able to do some writing and get some things done while trying to take it easy.
So, that's my story. I'll continue to update my blog about LDN. I plan to stay at the 3 mg dose for awhile now but may try the 4.5 mg dose again at some point. I'm fairly small to begin with, plus there's that tendency for people with CFS to react strongly to medications. The good news is that LDN has almost no risks or side effects since it's such a tiny dose. Some people (not me) experience vivid dreams or interrupted sleep with LDN, but that seems to only last for the first week or so, when it happens at all.
If you're interested in trying LDN yourself, I encourage you to thoroughly read the www.lowdosenaltrexone.org website. It explains how LDN works, provides details of studies done to date, and gives very detailed information on dosing, compounding, and how to take it, as well as cautions for people with certain conditions or medications. The site was developed by a group of doctors who have pioneered the use of LDN for immune system disorders. I contacted several of them from the website, and they were very helpful when I had questions. I printed information from the website and shared it with my family doctor and my sons' pediatrician. My family doctor was excited by what she read and plans to try LDN for several patients with immune system illnesses.
If you'd like to read about the experiences of other people with CFS who have tried LDN, here are a few places to look:
So, that's the scoop. This is the first thing in six years of illness that has provided any significant improvement for me. If anyone else out here has tried LDN or decides to start it, please let me know about your experiences.