For anyone who doesn’t know, Low-dose naltrexone (LDN) is a medication taken at low doses for diseases such as ME, fibromyalgia, HIV and multiple sclerosis. I came across it while perusing the pages of a great online forum called Foggy Friends. Foggy Friends has been set up by people living with ME/CFS, for people with ME/CFS and their carers and loved ones. It’s a wonderful resource for learning more about the illness, asking questions, learning about some of the latest developments in research and campaigning, and for celebrating small (or big) achievements or challenges. The forum acknowledges that people have frowny days and it has a dedicated area for people to vent their spleen or have a moan. But it also encourages positive stories such as observations of kindness and things that have made you smile today. You can find the site at http://www.foggyfriends.org
I’ve decided to look seriously into the viability of taking LDN, and some of you with autoimmune diseases may have heard of it as some sort of wonderdrug. I’m not just a bit of sceptic when I read about amazing therapies and medicines – I’m an uber sceptic. Imagine Richard Dawkins wearing a Tim Minchin hat and Paul Zenon trousers and you’re not even close to my level of scepticism yet. It’s just in my nature to believe more in the power of self-determination and proven and re-proven science, than in a lauded miracle cure or even (and this is off-topic but no doubt I’ll get onto this subject in a later blog post) biopsychosocial excuses to keep some medical in a job. So I’ve spent a few months researching LDN before deciding to take it seriously and put my money where my mouth is (yes, I did say money: here in the UK it’s not straight forward to obtain and it required a private prescription). I’ll put below links to websites I’ve used to find out more about it, because there’s already so much alchemy around chronic illness treatments, that just finding out where to find out information can be exhausting. Hopefully for any of you interested in doing your own research abut this drug, these links will give you a starting point. Of course the following is just my experience, and there are other ways to go about this.
At higher doses LDN has been prescribed to help recovering addicts come off drugs and alcohol dependency. But since the eighties in the US it has been prescribed in low doses to help people with auto immune diseases and other conditions with a lot of success. But in the UK we have been slow to pick up on it for these “off label” uses – hence not just being able to ask your GP for it. It has few side effects, leaves the system after a few hours and is relatively inexpensive. This video explains in quite simple terms the drug’s effect on the body’s cells:
This process causes the body to produce more endorphins and starts to boost the immune system. When the immune system starts healing itself, symptoms of autoimmune disease can start to improve. Although the World Health Organisation categorises ME/CFS as a neurological condition it also has an immune component. For more information on LDN, I used the following websites for research:
I also looked up patient reviews in websites such as Phoenix Rising and the Facebook group Myalgic Encephalomyelitis Global to get a feel for success rate, effectiveness at different doses and for different diseases and its side effects. Here are some of my research links, but I strongly recommend you do your own research too:
My positive thought for this post is how affirming it is to research into other people’s experiences of managing chronic health conditions – I haven’t just learned about their medicines but their life stories. It’s reassuring to know that they experience the same as you, they feel limited by their disabilities and feel like less of a person just like you do, and yet come out the other side emotionally secure and resolute to take control of their lives with whatever level of impairment they still have to endure. We all have ups and downs when living with chronic illness, but it doesn’t just have to be about the downs.
Lastly, but by no means leastly theis video is helpful in explaining how LDN works on the body and how it’s helped autoimmune conditions: