Low-dose naltrexone (LDN) for ME/CFS

  • @blanketfort replying to myself? >< ah well i am too zonk to work out a better way. Just thought I should update my LDN travels. I ended up stopping LDN for two weeks and my BP didn't change. So have concluded that bp rise and LDN were just concurrent not causal. Sorry for the non helpful derail into bp!
    Have recently started back at 0.5mg, though these days I'm by myself almost all the time so I just don't know if I'm up for the nausea that comes with increasing dose (the v active doggo doesn't understand why i don't enjoy throwing up). I would just give up on LDN and maybe try again in a couple years, but I've already spent so much $ on it and it expires in September. I really wish there was a more precise way to increase to 0.6mg, 0.7mg etc rather than jumps. The little syringe thing the pharmacy gave me is so not precise especially when i have loss of fine motor control.

  • @coco if it was five years ago that was before more recent research (clinical trials etc) that have made LDN less left field and more acceptable to doctors who were reticent. (I was put off trying it for a while because I saw it recommended by groups who also promoted other things i knew were snakeoil. But more research convinced me to give it a go

  • @blanketfort replying to me again but just a final update on me and ldn:

    I think I’m gonna stop trying LDN. The potential benefit is feeling better than I actually am. Which itself has the cost of more risk of PEM crashes, less signals from my body that I’m doing too much. I don’t have confidence to define or enforce boundaries with myself let alone in the presence of others. I will pretend I’m not as sick as I am and will feel more of an imposter (doubt my own diagnosis) at the same time as potentially making myself sicker. Each up in dose makes me sick as a dog for a week, followed by a couple of good days, on which I do too much, followed by a week of crash and loss of ability to walk etc. The obvious thing would be to avoid that bit where I do too much, but seriously i'm mostly under house arrest with me/cfs, if i am able to walk with my dog to the corner of the block and back, i'm gonna do it! So even though it might work for me physiologically, i don't think it does pan out for me in real life. (plus too exy$)

  • @blanketfort Thanks for the update. It’s a risky business trying new meds/ supplements etc. Best wishes.

  • Community Moderator

    @blanketfort ditto on @Glimmer's response, really appreciate the update to help weigh up the pros and cons, such a lot of important factors to consider. Sorry you had to go through such serious highs and lows.

  • Community Moderator

    Thanks for the link @iris. Also interesting to read through the comments to the post.

  • Community Moderator

    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

  • Hi folks,

    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

    Thanks all

  • @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.

  • Community Moderator

    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!!

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