Low-dose naltrexone (LDN) for ME/CFS
@gretch ncned s research on ldn, see link
Thanks for the link @iris. Also interesting to read through the comments to the post.
Aye, I think it's important to recognise that, for whatever reasons, some people diagnosed with ME/CFS do not get benefits from LDN (or get side effects so strong that it's not feasible to take) and that this in no way invalidates their diagnosis or experience. It's great news that for some people with ME/CFS that the research and support for LDN is firming up (and it may be that further research into it helps those whom LDN isn't currently useful for) but there's still a ways to go yet. But we're heading down the path, and at an ever-accelerating rate
@blanketfort thank you for sharing your experience
I will be starting LDN soon. My dr. will have me start on .5mg and recommended to increase by .5mg weekly (or fortnightly/longer, as tolerated). I think I might like to keep some kind of journal to monitor my tolerance/experience (more for my own records and understanding of how it helps or doesn't help me).
Does anyone have any ideas/methods for effective journaling for this kind of thing? How does one measure 'fatigue', 'pain', 'brain fog' etc
@coco I hope the LDN goes well and is beneficial for you. Keeping a diary/journal is a great idea. Make a note of how you are feeling, maybe give yourself a 1-10 rating.
I wanted to share my experience with LDN. I've been on it for about 9 months now and feel like there is benefit. I'm on 4.5mg now - the top dose - after a gradual incline.
I didn't have too many side-effects. I did find it made my body want to move. My legs and muscles felt twitchy. This is great as someone with CFS, but it also was hard as I can only do limited exercise. I felt really restless in this time. It took a few months for these sensations and ability to start to feel more aligned.
I am now able to go for a walk most days with no ill effects, so that's a win.
Wondering if anyone else had that feeling at all? Has anyone been able to progress to more exercise each day by using LDN?
@sarahv I'm so happy to hear of your improvement! yay for the win!
@Daffy_Dave I tried LDN and found it exactly like you.
Great to hear @sez
@coco Sorry slow reply here, I lost the login details for the forum and haven't had spoons to sort it out. I kept a journal while starting ldn and found it really important. I have a very rubbish memory (brain fog) which was made all the more so by more sick feeling days with side effects. Also it's a really slow process increasing incrementally so I could never remember when i changed dose etc. I just used a notebook and wrote the date and recorded whatever applied on the day:
-side effects or unusual issues
- level of usual ME symptoms (compared to usual),
- pain levels (eg "head exploding" "all the headaches making me nauseated" " agony"),
- which painkillers I took and when and how much,
- what time I took the LDN (some people find it affects sleep patterns) and dose of course,
- sleep disturbances (i dreaded night terrors which i'm prone to anyway),
- time i went to sleep and woke, whether i napped in the day,
- any exceptional activity etc eg going to supermarket which i've rarely been able to do in over a year - this is when I realised LDN might be helping... then crashed!
Sorry that sounds like a long list but it really wasn't too hard. Basically I found it simpler to just freehand it and note what seemed important on each day, rather than having a form or spreadsheet, found it less cognitively demanding than trying to fit things into imposed scales etc. But i expect this is really an individual preference, maybe having a proforma checklist is less demanding for others. At the very least make sure you keep note of dose you take each day. I also found knowing the time of day taken and sleep (or bedbound if not sleep) hours useful.
Oh I found this on the CDC website in case anyone is looking for some help with the journaling side of things too.
@blanketfort Thank you! !
So it's been a few months and I still haven't started on LDN but I have recently started doing a bit more research into it and preparing myself mentally.
There's a fb group with loads of info on it as well.
Apparently The filler avicell can cause people problems? Which is weird because the chemist was a fan of it and said it was like the least to cause issues (and the fb group also mentioned that's how many chemists react lol).
Anyway apparently it can also cause thyroid issues in a small percentage of the population. which now has me wondering, because i recently started taking another compounded drug with avicel as the filler AND recently had a bit of a warning bell re one of my thyroid levels. never thought the 2 would be related. i just take for granted that fillers are mostly harmless...
can't really know if they ARE related of course, unless i stop taking the other med/get it with a different filler.
Anyway I'm curious is anyone here has positive/neutral/negative experiences of avicel? if i'm spelling it right?
For those out there who are taking LDN, does it help with insomnia? I’ve tried Melatonin again these past two nights - it does not work!!
@coco You're spelling it the same as my prescription, so I reckon you're on the money. As far as I know it's not knocking me around - I had a bit of a 'bump' every time I upped my dose until I got up to 4mg, but long-term functionality (particularly cognitive performance) with LDN higher, and no noticed reduction. That being said, I'm just one person, and people with ME/CFS tend to be more sensitive to things their bodies disagree with, and all our bodies are different.
@Glimmer I'm afraid I didn't notice any significant improvement in quality of sleep with LDN. I don't get 'insomnia' per se, but I get ridiculously interrupted sleep, and the extent of the interruptions didn't seem to change that much. That said, if you do try it, I hope it helps!