Low-dose naltrexone (LDN) for ME/CFS

  • @Looch In my diary I’ve got that I felt sick, had headaches, light sensitivity, stomach pain, restlessness and lower energy. I was taking another medication for some of it, though, so some may have been related to that; and it wasn’t my long term experience, just when increasing/decreasing. On another note, as a result of poor planning I went straight from 4mg to nothing; I felt terrible for about three weeks before starting to feel better.

  • @dejarik Thank you for checking that. I have just increased from 1.5mg to 3mg, 2 weeks on 3mg then up to 4.5mg. Felt better the first week but more tired this week, will give it a few months and see. As you said, there are so many other factors it is often difficult to tell. The Professor I saw said that 70% of his ME/CFS patients had improvement on it so we will see 🤞.

  • @sez I am really interested in spirinolactone and want to try it. In terms of LDN, it seems mainly to help with fibromyalgia? But maybe the research through Griffith Uni will find a way to use higher doses without causing too many side effects. It seems to act on the NK cells. Should we start a spironolactone thread?

  • @Daffy_Dave

    I found pretty much no benefit to taking LDN, tried it multiple times for up to five months at a time. That said I also didn’t find any particular negatives ! I think a little bit of disrupted sleep at the beginning.

  • I’ve been trying LDN for around six weeks now. I started with capsules from a compounding pharmacist that were 0.5mg, increased by 0.5mg every week to 1.5mg but the side effects at that point were horrid. Each bump up i have disturbed sleep patterns, nausea, migraines, just feeling “unwell” (more than usual lol). But the worst was the impact on my BP. I have hypertension that has only been under control for a few months, and so the massive spike in BP and HR (talking like 170/119 whilst lying still trying to sleep at night) was unsettling and unpleasant (most apparent at 1.5mg dose).

    Have been switched to liquid form of LDN which is supposed to make it simpler to increase dose by smaller increments, but it doesn’t actually help that much (it’s 5mg per 1mL, which means 0.1mL is a 0.5mg dose, 0.15mL is a 0.6mg dose, and 0.2mL is a 1mg dose), it added one step in between 0.5 and 1 but even that is iffy as the dosing syringe doesn’t have a marker for 0.15mL!

    Still struggling to get my BP back down to where it was as well as maintaining the 0.6mg dose of LDN. Going to give LDN three more months with more antihypertensive meds to see if it happens to have benefits that are worth it. Probably won’t find out til I stop, but then the BP effects will muddy the outcome anyway. Hmm.

    Sorry long blurb and no clue! ><

  • @blanketfort I have been on LDN for about 8 weeks. Started on 1.5 mg, increased 2 weeks later to 3mg, then 4.5mg, which I have been on for about 2 weeks now and is my max dose. Same side affects as you- nausea, sleep disturbance, the “off” feeling, some headaches. No issues with BP but I don’t have any history either.
    I haven’t noticed any significant improvement, I think my IBS may be slightly better, maybe the daily flare ups settle more quickly but I have also stopped working during this period so it’s hard to say if any improvement is from LDN or
    less “load “.
    Like you, I will persevere until I go back to the specialist in July. Good luck, I hope things settle down for you and you are able to feel some benefit, keep us posted 🤞

  • @Looch i'm relieved to hear the 'off' feeling isn't just me, I started wondering if I was just being a wuss, but it's definitely an adverse effect.
    It's so hard to just change the dose of LDN and keep all other variables of life steady, which means it always feels like a guessing game as to whether it's helping or not.
    I've dropped all the way down to 0.5mg (my starting point) again to try focus on getting BP under control before challenging it again. (sorry if i'm repeating myself, not got the hang of this forum format yet and i can never remember what the previous posts have said, I can't see them and write reply at the same time?).

    Since the beginning of the year I doubled the magnesium I'm taking and am more consistently taking PEA, so I'm not sure if they are to thank for less muscle spasms and pain, or if it's partly LDN reducing pain too. Will wait and see what happens when I stop LDN I guess.

  • @Royal-Flash I realise this is quite old, can you please expand a bit on what you mean by the dr not wanting you to be on it because of the way it works?

  • @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?

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