r/LowDoseNaltrexone

Hi everyone. 34F Australian with mild ME/CFS caused by blood cancer in my early 20s. I went into remission but ended up with long term chronic fatigue that wouldn't go away. I learned about low dose naltrexone on my own and asked my GP to trial it 8 years into my remission. And it worked at 1.5mg but I felt worse at 3mg so I stayed at 1.5mg. I almost immediately felt an improvement and energy increase, so I went from evening to morning doses.

After 2 years of trying to increase my dose but struggling to get past 2mg, I started taking a second dose at lunch. This helped a lot. I then took a third dose in the day, this also helped more. I became pregnant with my first child so I stopped experimenting until I was postpartum. For the last 10 months, I have been taking my 2mg dose about every 1.5-2 hours. So I'm taking about 6 doses a day, every day (so total about 12mg split through the day).

I came across this idea organically (I felt better so I kept going) and then I read about a woman with ME/CFS taking her LDN every hour. She claims that she did this for a long time and now no longer needs her LDN. I read her replies on the Health Rising blog. She speaks of calcium channels being cleared or something when we take LDN or take caffeine.

Anyway, I can't seem to find many people discussing this way of taking LDN. I read on Reddit of a woman with ME/CFS seeing a specialist in North America and being encouraged to slowly titrate her LDN to 50mg a day and then trying Abilify. I guess theoreticay I am on my way to increasing how much LDN my body takes a day (from LDN to normal naltrexone dose).

Does anyone else do this? Has anyone else heard of this? I have seen posts of people taking LDN twice a day but not 3+ times a day.

I want to trial more ME/CFS medications (such as the nictoine patch or Mestinon or low dose rapamycin or microdosing GLP1) once I'm done breastfeeding. But I'm shocked by how much this strange LDN protocol is helping me. Anyone else???

To start I react badly to every medication for this cursed affliction so I was expecting the worst.

I'm two months into ldn now for cfs mcas pots etc.

I thought I wouid add my experience as people seem to be scared to start and most people that post are having negative effects.

Firstly thanks to the mods of this sub I love you guys for the support in the beggining.

OK so onto effects, started 0. 1 compounded, only effect wild dreams.

I have now worked my way up to 3.0.

So far my tremours have massively decreased, like a massive noticeable difference.

My pots is much better I feel ill when I stand on the odd occasions rather than the norm.

I have had moments of joy, they seem to spring up now and then but I haven't had that feeling in years.

I want to do more, my brain is not in panic mode where it just shuts down, I actually want to improve my life.

I haven't anything pem related to report on and heat intolerance seems the same.

So far no negative effects olny good vibes highly recommend.

Hi all, I have been prescribed LDN for various conditions including ulcerative colitis and gastritis and possible chronic fatigue. From the UC I know I often get the rare, bad side effects so thought I’d start really low on LDN - Friday morning I had 0.5mg (edit - corrected to 0.5mg from 5mg) Almost immediately I felt weird, my tongue felt odd in my mouth, then I started to feel jittery inside and got chest pain, a headache and generally just felt really weird. Got through the day, a few weird night wake ups and felt a bit like I was hallucinating at times but bit of a blur. Saturday I felt better not 100% but better then stupidly I had a glass of red wine. I didn’t know I shouldn’t and it was a huge mistake, I felt so awful afterwards, I was shaking really badly, terrible headache and so took two paracetamol which seemed to make me worse. Was up most of the night and feel terrible now. Have I just had the worst side effects? Will I feel better soon? Is it worth trying again when I can face it on a lower dose or admitting it won’t work for me? Anyone else so ill at the beginning? Thanks for reaching the end if you did :)

I started LDN 10 days ago. I was told to start at .5mg and work my way up every two weeks until I reach 4.5mg. Well I was feeling fine so long story short I’m already at 4.5mg. I haven’t had any negative side effects…. Am I just lucky?

First of all - a big thanks to the wonderful mods here! You helped me and a lot of people so much already, I really appreciate it.

I would love to get some community help on my situation rn:
I started LDN in July (going up 0.5mg every two weeks). Everytime I went up, I had some awful days, but they went away. When I first started I had the feeling that LDN helped me directly after the first dose (it was the first morning in months that I woke up without pain.) But other than that I couldn’t say if it helped my over all ME/CFS condition tbh.
After trialing up the past months, last Saturday (8 days ago) I went up to 3.0mg. I had those first really really awful days, and then it got a bit more easy. But I still have a lot of symptoms, maybe even pem, I don’t know. (That’s also the shit - I don’t know it it’s because of LDN upping or if it’s pem or whatever)
What should I do now? Should I go down again or just wait? Or should I go to 3.5mg next week?
How do you know it’s too high if you feel shit all the time?

I appreciate your help, thank you!!💘

Ok so I’ve been reading all the posts about your vivid dreams and how they go away within a few months but has anyone kept having them? Mine haven’t stopped and I’ve been taking it since July. If anything they’ve been getting more vivid and very specific, like it’s almost as if I’ve been working through childhood trauma because I’ve had dreams about visitation with my dad etc. Nothing too bad but definitely intense to be experiencing every night. I’m starting to think I need to write them down before i eventually forget a few days after because they’re a mind fuck that I wanna show to my therapist LOL

I started taking my 1.5mg prescription 5 days ago. I'm not noticing a huge difference yet. I'm instructed to be at this dose for 2 weeks, then double it to 3mg by taking two pills instead of one. I feel like I should just double it now since I'm tolerating it well and I'm not feeling much effect. I'm taking for mold illness symptoms and chronic fatigue of course much worsened by the mold illness.

I’ve been taking 4.5mg for two years now. It’s been very helpful. I take it very early in the morning and still have sleep disturbances. I am thinking of reducing my dosage to 1.5mg to see if that helps. Will I relapse in my symptoms if I do? Will I still see benefits?

I feel abysmal and genuinely in a deep dark depression with extreme catastrophising anxiety.

Can it be related to this? I suffer with depression and anxiety anyway but this seems to have really set something off.

My brain fog and derealization is extreme.

Complete analysis paralysis and executive dysfunction. I haven't done anything for days and freaked out so much I let people down last minute for things I'm meant to be doing over the next few weeks.

Genuinely feel like the world is coming to an end and I don't feel like I can cope.

I haven't slept in four nights either. I hoped not taking it yesterday would have meant I slept last night. But nothing.

I'm not necessarily blaming the drug as I'm a mental wreck anyway but I genuinely feel like I'm in crisis.

Is this possible after simply having 3 days of 1.5ml?

Or is it a coincidence am in just having a mental breakdown?

just started LDN for chronic functional dyspepsia (fake fullness, tightness, pressure, reflux, loose stools etc)
after typical first line (gi meds) and second line (psych) as well as herbal medicine & acupuncture & supplements didnt help.

im on day 2, but right after even day 1 i felt that it made the fake fullness and other symptoms worse. is this normal?

additionally, i am a little worried since i know antispasmodics / ppis made things SIGNIFICANTLY worse.

and, i have been taking gabapentin for a while now since it helped a bit (only thing to touch on the FD). like so a couple hours after taking gabapentin i could finallt feel a bit hungry like true hunger and eat. but since taking LDN the gabapentin it feels like it stopped working

also feels like it made my breath smell worse not from oral cause

does LDN cancel out/weaken gabapentin? does it work like antispasmodics which made my symptoms worse previously?

Has anyone switched how they take LDN?

For example, I had thought about switching from diluting LDN to getting it compounded in pill form.

Has anyone done this? Did switching help or worsen?

Anyone take it 2 times daily? I have been taking it 1 time daily for 2 weeks and I am on a roller coaster of panic all day.

Has anyone gotten pregnant while using LDN and then successfully stopped taking it without causing a miscarriage? I’m currently 5 weeks 5 days pregnant and on 1.5 mg of LDN. I am very unsure about whether to stay on or get off. I have Hashimotos and Endometriosis. Has anyone weaned themselves off LDN and continued to have a healthy pregnancy? Or stayed on LDN and had a healthy pregnancy and healthy child?
Thank you for any advice!