Long-time readers of my blog will recall that I started taking low-dose naltrexone (LDN) a long time ago - almost 6 years now. It was one of the very first ME/CFS treatments that actually made a significant difference for me and caused obvious improvement in my overall condition and quality of life. Here I want to share a brief update, as well as something new I've learned about dosing with LDN, and some newer links for more information.
For background for those who are unfamiliar with LDN, I suggest you read these earlier posts: my introductory post on LDN and my experiences and an LDN update, including dosing information and how to get started.
So, fast-forward 5 1/2 years...earlier this summer, I was wondering whether LDN was still working effectively for me after all these years. I felt as though I wasn't doing quite as well as I had been when I first started it, that perhaps it wasn't working for me anymore. I turned to the Facebook LDN for Fibromyalgia and CFS group I belong to and posed the question to others who take LDN for these illnesses. Two different people said they'd heard that after being on it for several years, you may have to either lower the dose or take it every other day to keep it effective.
So, figuring I had nothing to lose and it couldn't be harmful to take less, I tried switching my dosing to every other day (still at bedtime and still 3 mg). Wow! Like magic, I felt a surge of energy on this new dosing schedule, just like when I first started LDN almost six years ago. After a week or two (I am always the guinea pig in our house), I switched my son to the same alternating-days dosing schedule. We are both doing well with this.
As for official recommendations on this strategy of lowering the dose and/or reducing the frequency, the LDNScience website (see below) says on its Q&A page: "Can your body become accustomed to LDN's rebound effect?" And their answer is:
"In theory the answer is yes, and therefore it may make sense if LDN is losing its effectiveness to take a break from using it every so often. This question has not yet been addressed in clinical trials."An even better resource is this article recently written by Jayne Crocker of the LDN Now group, LDN: Long-Term Use, which describes exactly this strategy and WHY it not only works but is more effective.
Well, it has certainly worked for me and my son!
If you have not yet tried low-dose naltrexone, here are some great resources for learning about it yourself, discussing it with your doctor and educating him/her, and how to obtain it and get started on it:
- LDN Homepage - the oldest of the LDN websites and no longer being kept up-to-date, but it was started by the doctors who pioneered its use and is still a great place to start to understand what it is and how it works. There is also a list of compounding pharmacies that supply it (we still use Skip's in Florida).
- LDNScience - a public information project of the MedInsight Research Institute, this website provides excellent scientific information on LDN, including a short video that explains how it works, the Q&A section I mentioned above, success stories, and a How to Find a Doctor search engine.
- LDNers - a website focused on the use of LDN in MS but with information relevant to other illnesses as well, including a list of research studies on LDN.
- Stanford FM study - positive results of a study conducted at Stanford on using LDN for fibromylagia patients (big shock - there have not been any studies done yet on ME/CFS).
- LDN Research Trust - a UK organization dedicated to research and education on using LDN for various immune disorders, like ME/CFS (and relevant anywhere, not just the UK). The site includes a wonderful LDN Information Packet that is ideal for sharing with doctors plus specific information on how to obtain LDN in the UK.
- My overview of LDN and my own experiences starting it, 2008.
- My 2010 Update on LDN, including details on dosing and how to get started.
Please feel free to share your own experiences with LDN in the comments section.