Low Dose Naltrexone is the treatment I hear the most positive stuff about among PWMEs. Need some questions answered by those who have used it

[Garz]

i have been using it for over 1 year

its one of the things that has helped me recover to around 60% of my former function so far

but as per the above - it is not a "normal drug" to be given at a prescribed dose and that's that.
it has to be tailored to each patient /by each patent

i buy it from in 50mg form from buy-pharma.md - which have been v reliable and inexpensive - and mix it with 50ml of water and dose as per sushi mentions

i had very strong reactions at first and had to start at under 1mg per day
at one point for a week of so it caused odd fleeting pains all over my body a few seconds here a few seconds their then all over and then somewhere else again - it was like it was getting random electric shocks all over - very odd

i had to reduce the ramp up rate to around 0.01mg per day ( so i had to increase by only 1 hundredth of a 1ml graduated syringe full per day ) that's how sensitive some people are

i also had disturbed sleep so switched to taking it in the am - which helped a little -but the main solution was to ramp up v slowly

however after this phase my energy started to improve significantly - the ldn was the only thing i had added so i am pretty sure its what drove the improvements

i have lyme and bartonella infections - so it can help in infectious diseases when they are driving fatigue etc

i also recommend the LDN research trust as a decent source of info https://ldnresearchtrust.org/

it recommends people with lyme / auto-immune diseases like hashimotos / and CFS to proceed v carefully - and to expect adverse reactions at first - and even that these are good indicator of a good outcome later - as that's the pattern they see - strong reactions to LDN initially are more likely to have more benefit in the log run

ramp up can take 6 months or even1 year

not all practitioners follow this advice and i often hear of people being prescribed 3.5mg "average dose" right off the bat ( as if its a typical pain or sleep medication ) and reporting either - it did nothing for them - or they had side effects and had to stop

this is not how its supposed to be used - especially in chronically ill people - practitioners doing this are just ignorant of what they are prescribing.

 

[Guwop2]

i have been using it for over 1 year

its one of the things that has helped me recover to around 60% of my former function so far

but as per the above - it is not a "normal drug" to be given at a prescribed dose and that's that.
it has to be tailored to each patient /by each patent

i buy it from in 50mg form from buy-pharma.md - which have been v reliable and inexpensive - and mix it with 50ml of water and dose as per sushi mentions

i had very strong reactions at first and had to start at under 1mg per day
at one point for a week of so it caused odd fleeting pains all over my body a few seconds here a few seconds their then all over and then somewhere else again - it was like it was getting random electric shocks all over - very odd

i had to reduce the ramp up rate to around 0.01mg per day ( so i had to increase by only 1 hundredth of a 1ml graduated syringe full per day ) that's how sensitive some people are

i also had disturbed sleep so switched to taking it in the am - which helped a little -but the main solution was to ramp up v slowly

however after this phase my energy started to improve significantly - the ldn was the only thing i had added so i am pretty sure its what drove the improvements

i have lyme and bartonella infections - so it can help in infectious diseases when they are driving fatigue etc

i also recommend the LDN research trust as a decent source of info https://ldnresearchtrust.org/

it recommends people with lyme / auto-immune diseases like hashimotos / and CFS to proceed v carefully - and to expect adverse reactions at first - and even that these are good indicator of a good outcome later - as that's the pattern they see - strong reactions to LDN initially are more likely to have more benefit in the log run

ramp up can take 6 months or even1 year

not all practitioners follow this advice and i often hear of people being prescribed 3.5mg "average dose" right off the bat ( as if its a typical pain or sleep medication ) and reporting either - it did nothing for them - or they had side effects and had to stop

this is not how its supposed to be used - especially in chronically ill people - practitioners doing this are just ignorant of what they are prescribing.

All very useful information, thank you.

I also plan to take it in the a.m as im already a sensitive sleeper. As the for the LDN itself, mine came as liquid (I may use your tablet link in the future, mine was more expensive from Dixons pharmacy here in the UK) and ive purchased 1ml syringes with increments of 0.1ml to start very low. You've said you started at 0.01mg, which I think could measure like you did using 1ml syringes at 0.01ml - the label on the LDN says "INIT Naltrexone 1mg/1ml", which i guess means 0.01mg would be the same in ml.

Good advice and tips, i'll have my fingers crossed.

 

[Rufous McKinney]

what ME/CFS symptoms did it alleviate?

the greatest effects I noticed was a gradual reduction in painful "swelling" (daily cycle) (tissue, angiodema type)

suggesting it reduced something thats coming from allergic /mast cells or inflammatory. This symptom was acutely painful and much improved.

I experienced no initial negative symptoms. I want the LDN but do not feel it is a "cure"..its seems to just be reducing the intensity of some symptoms.

 

[Garz]

You've said you started at 0.01mg, which I think could measure like you did using 1ml syringes at 0.01ml - the label on

not quite - i started at 0.5mg - using the syringe and 1mg / ml solution - i initially went up to 1mg and found that was where i started having significant reactions - so from there i had to go in very small increments - ie 0.01mg

my 1ml syringe was actually graduated with 10 divisions in between the main 0.1ml increments - so they were 1/100ths of a ml ( 0.01mg per divisions) - so it was easy to do

at these tiny dose increases you don't need to be super precise from day to day - if its 0.015 one day and 0.005 another its no biggie - over time the increase rate will still be linear and you still get to target dose -

i have settled on around 5mg now

 

[Garz]

I want the LDN but do not feel it is a "cure"..its seems to just be reducing the intensity of some symptoms.

yep - i agree - not a cure - more a supportive treatment

the opiate receptors it works on have roles in regulating the immune system and various white blood cells - so i view it as an immune modulator - that can be helpful where the immune system is dysregulated by bacterial infections

 

[Wishful]

For those whom it has been effective for can I ask what ME/CFS symptoms did it alleviate?

It worked wonderfully well for blocking my neuropathic pain (aching focused on my front thigh muscles). It didn't have any other noticeable effects for me.

Someone may have crashed for a year from trying LDN, but there's a possibility that the crash was from some other cause. This is ME, so responses to various factors is individual. I expect there's a tiny chance of a negative effect for you, but there is also a tiny chance of a serious negative effect if you don't take it now. There might be a bad effect if you take the recommended dosage, and there might be a bad effect if you take too little or too much. You won't know until you try it and see what it does for you.

For me, the recommended dosage (4.5 mg capsule) worked well, but experimenting got me down to 2.5 mg sublingual (needed 2/3 the amount needed if swallowed). 2.25 mg worked fine, but 2.0 mg had nearly no effect. 6 mg was less effective than 4.5 mg.

For some people, the time of day matters. For me it didn't, and since it lasted somewhere between 36 and 48 hrs, I alternated morning and evening doses.

I'm very glad that I tried LDN. I recently needed to go back on it, and I'm glad that it still works. Chronic pain is really draining.

 

[Rufous McKinney]

aching focused on my front thigh muscles

this is the location of my worst muscular (it seems) pain (not joints, bones, ligments)

Whats up with this anatomy? Thats exactly where I found myself once paralyzed a block from here by a phone pole....

 

[Wishful]

Whats up with this anatomy?

I tried searching once, but never found anything that might fit. I assume the nerves for that are positioned in a particular way--closest to or furthest from something--which means they're most strongly affected. Another possibility is that those muscles are the most something: largest, slowest twitch, fewest capillaries, whatever. When my ME was more severe, the aches would spread further, but those front thigh ones are the starting point.

Anyone have a map of nerves, or a "Guinness book of Muscle Records"?

 

[Rufous McKinney]

Here is a shot of those muscles...to me it feels like its that BIGGEST muscle (not the narrower ones) altho I can't entirely pin that down. See picture below...and our reasons for pain are likely missing from this web site.

https://www.sportsinjuryclinic.net/sport-injuries/thigh-pain/front-thigh

 

[Garz]

its just the largest muscle group in the body - so its likely its just manifesting there - as that's where the larges concentration of muscle is. they are also in use quite a bit - eg just standing up uses them

things like this can have a general cause - but manifest differently in one person to the next. i would guess that its a muscle metabolism problem - quite possibly caused by a circulation problem.

i also know one other Lyme and bartonella patient who has this attacks of pain in their thighs as one of their main symptoms

bartonella causes something called "breakaway weakness" that is similar - in that a large muscle group like this just suddenly fails, often with accompanying pain, in a total way causing the person to fall over - moments later they are able to stand again/ albeit shakily

this video by the worlds most respected bartonella researcher is worth a watch - it explains how small vessel disease ca cause just about ANY symptom in the body

 

[Wishful]

I doubt that my aches there are due to any problems with the muscles. There's no reduction in function when they're sore, even when I'm climbing a steep hill (or riding up one). I believe it's a perception of pain due to signalling problems. If that's the largest muscle group, it would also have a difference in the nerves, the signals, and the processing in the brain.

 

[hmnr asg]

Keep in mind that there are many people who have had no response to it at all and many who couldn't tolerate the side effects (and a few who claim they were permanently harmed by it).

As for me, I tried it at three different points during my cfs journey and each time I just couldn't tolerate the side effects. I even went as low as 0.4 mg and still the side effects were brutal: insomnia, stomach pain, bloating, agitation, anxiety , vision problems to name a few.

I haven't given up and might try again at an even lower dose. But if it works for you it's great !

 

[Guwop2]

After reading the comments, im not sure LDN will be for me. I have no muscular issues (which seems to be the dominant areas LDN can effect), only PEM. Ive tried to consider muscular aches/pain as adequate descriptions of my symptoms but they just aren't. Mine feels like a permanant (but fluctuating in severity) viral exhaustion, with a tightening/worsening of the pain symptoms if I dont rest.

Why LDN appealed to me initially was because i read that it is an immunomodulator, like probiotics have also been described as being, and probiotics are the only thing that works for me alongside diet.

 

[Garz]

After reading the comments, im not sure LDN will be for me. I have no muscular issues (which seems to be the dominant areas LDN can effect), only PEM. Ive tried to consider muscular aches/pain as adequate descriptions of my symptoms but they just aren't.

the comments here are not necessarily a good indicator of what LDN is used for, or is effective for. many people with many forms of chronic aliments find it helpful - not just for issues that are muscular in nature - in fact i would say that's a rarity. For me it increased my energy and reduced PEM.

i see it used most often for auto-immune diseases, CFS and chronic pain issues

 

[Garz]

Keep in mind that there are many people who have had no response to it at all and many who couldn't tolerate the side effects (and a few who claim they were permanently harmed by it).

As for me, I tried it at three different points during my cfs journey and each time I just couldn't tolerate the side effects. I even went as low as 0.4 mg and still the side effects were brutal: insomnia, stomach pain, bloating, agitation, anxiety , vision problems to name a few.

I haven't given up and might try again at an even lower dose. But if it works for you it's great !

i am generally what is regarded as moderately sensitive to most treatments - but i had to start on 0.5mg - rather than the typical 1.5mg - so if a person is very sensitive to things - it makes sense to me to start well below this.
the start point is not actually that important - or rather not important if its too low - as the ramp up over time will in any case get to suitable doses - starting too high can defo be an issue

some people are crazy sensitive to all sorts of drugs, herbs, supplements etc
so much so that its quite hard to even theorise what could be driving such strong reactions to such tiny doses
like to a single drop of a tincture or a fraction of a capsule of a common supplement
perhaps MCAS is involved - that can have crazy powerful effects to tiny amounts of seemingly innocuous substances

 

[hmnr asg]

i am generally what is regarded as moderately sensitive to most treatments - but i had to start on 0.5mg - rather than the typical 1.5mg - so if a person is very sensitive to things - it makes sense to me to start well below this.
the start point is not actually that important - or rather not important if its too low - as the ramp up over time will in any case get to suitable doses - starting too high can defo be an issue

some people are crazy sensitive to all sorts of drugs, herbs, supplements etc
so much so that its quite hard to even theorise what could be driving such strong reactions to such tiny doses
like to a single drop of a tincture or a fraction of a capsule of a common supplement
perhaps MCAS is involved - that can have crazy powerful effects to tiny amounts of seemingly innocuous substances

For sure, some people can have terrible reactions to anything. I think if anyone has CFS this is one of the first things to try. It has been used for many things. and you might be one of the lucky ones who can benefit from it.

In terms of why some people have bad side effects, I think it has to do with our genes maybe? I for one have been on many antidepressants and I can power through the initial few weeks of terrible side effects with no problems. I am not even particularly sensitive to medication, but LDN was absolutely unbearable for me.
From the comments I read on the following page, it seems that people mention the MTHFR being responsible? I also have this mutation myself.

The comments are very interesting :
https://www.healthrising.org/blog/2...ltrexone-chronic-fatigue-fibromyalgia-dosing/

Also there is a subreddit just for the various applications of LDN and you can read all kinds of stories. From miraculous cures to the worst side effects:
https://www.reddit.com/r/LowDoseNaltrexone/

 

[Garz]

From the comments I read on the following page, it seems that people mention the MTHFR being responsible? I also have this mutation myself.

yeah, I'm not surprised people are saying that, But the problem is MTHFR mutations are one of those topics that have kinda caught on in the chronic health issues world - and people out there believe MTHFR is responsible for just about everything under the sun, while the science of what is really going on is still in its early stages so, really, who knows.

overall, i feel the metric of how many people are mentioning it in the context of this or that disease is more a measure of what ideas have caught on/been picked up by social media etc - than they are an indication of what is really causal in terms of peoples health.

this is one of the more scientifically focussed forums as far as i can tell - but there is an awful lot of assumption and confirmation bias going on out there in the wider world. things along the line of
"I read somewhere that MTHFR mutations cause X symptom - i have that symptom and a mutated copy of the MTHFR - therefore the MTHFR is causing my symptom X" ( or even "my symptoms" - plural).

but the fact is, inmost cases, dozens of other things are just as likely (or more likely) to be causing those symptoms.

if there really is something clearly going on with people with 2 mutated copies of MTHFR genes - i would expect the people at the LDN research trust to have documented it - as they are dozens of physicians prescribing it to thousands of patients - and think they would be in a good place to notice.

 

[Rufous McKinney]

I for one have been on many antidepressants and I can power through the initial few weeks of terrible side effects with no problems. I am not even particularly sensitive to medication, but LDN was absolutely unbearable for me.

In my case:

LDN adverse side effects: zero

antidepressant side effects: after two days, PEM crashed for 60 days. Most horrible pill ever.

 

[Guwop2]

I started LDN treatment about 3 weeks ago. Began on 2 drops, then after a week upped it to 3 drops (this is a minescule amount compared the reccomended starting dose), which is what im on now. For the first few weeks I had intense dreams and suffered a bit of insomnia, but this has now passed.

What remains now (after 3 weeks) is a slightly spaced-out feeling and feeling just a bit off - bordering on a feeling that I have a cold (sensations of feeling run-down). Does anyone know roughly whether these present side effects should subside over time, or whether some side will be continous throughout this treatment? I've not experienced any benefits of taking it yet (dose is likley too low for this), but will persevere since Ive read dosage up to 9mg can be game-changing...though the current side effects are unpleasant enough to me want to pack it in.

 

[Garz]

side effects should resolve in time - but you will likely have to adjust your ramp up rate to suit your individual case - too rapid a dose increase for your particular case may cause continued side effects

in my own case i wanted to get to the target dose so elected to put up with some side effects during the ramp up phase - some of which were a bit alarming or just plain odd / unpleasant - so i just adjusted the daily dose as i went to keep things tolerable
ie stepping back down a little if things got a bit much - or holding the dose for longer till thing settled