Low-dose naltrexone (LDN) - how's it working for you?

[ArunP]

I started LDN in November 2014. My symptoms then were Blepharospasms, severe eye spasms that limited me from reading even, a general feeling of sickness and unexplained skin lesions that nobody could treat. I didn't have a proper diagnosis then. It was wither fibro/cfs.

I started at 4mg, it was too much for me. Finally settled at 1.8mg. It made a huge difference for me. I felt a lot better and peaked around 2-3 months after being on it. The lesions disappeared magically. My eyes were better and I felt quite normal as long as I didn't push myself.

Over this time I reduced my dosage to 1.5mg and was skipping days in the middle whenever I felt spastic and stimulated.

I was slowly starting to feel the stimulative affects of LDN have more of an effect. By May 2016 I was taking it only 4-5 days a week.

I tried Hyperbaric Oxygen Therapy in August 2016. This was the final straw. For my health and for LDN as well. I went into this terrible flare up I am only going deeper into. The HBOT acted as a potent stimulant and ended up wrecking completely my brain. Now, even 0.5mg of LDN makes me unbelievably spastic and terrible. The only thing that helps now is Clonazepam but even that I'm building huge tolerance to very fast.

LDN was great while it lasted. Its stimulative properties are a no-no for me now. Just a day on it and it takes me 2-3 days of high doses od Clonazepam to get me back on track.

And for the record, LDN worked best for me 1.5mg to 1.8mg. And taken around 11pm And worked as soon as I started it. Helped me as soon as 2-3 days after starting it. Sadly I can't take it anymore.

Regards,
Arun, India.

 

[Hugo]

Started LDN now to treat lyme pains mainly.

I did LDN for several years ago at that time I didnt have lyme but it was one of the worst medicine I tried since it caused pain (I was painfree at that time) and insomnia. So I stopped early on (just after a week). My dosage was 5mg.

Now wiser of the experience I started LDN with just 0.5 mg. My body seems to tolerate it with out any problems.

What time frame did you who started with such a low dose have for getting up in more mg?

 

[Hugo]

I dont know how you can all start at 4.5mg at once!! I am light CFS and I couldn't deal with the "herx" of starting LDN that high. It took me 2 to 3 years to go up to 4.5mg!!!!
Start low ALWAYS no matter what it is in CFS

Hi how did you increase (time and to what mg) your dosage and at what dosage did you experience any difference? I have just done LDN 0,5 mg in a couple of days. I noticed some small extra pain after an hour when I taken it. I also notice that when I wake up I am in a slightly better mode than usual. But ofc Im so early in it that its hard to say anything.

Thankfull for any reply in this questions.

 

[Seven7]

Hi how did you increase (time and to what mg) your dosage and at what dosage did you experience any difference? I have just done LDN 0,5 mg in a couple of days. I noticed some small extra pain after an hour when I taken it. I also notice that when I wake up I am in a slightly better mode than usual. But ofc Im so early in it that its hard to say anything.

Thankfull for any reply in this questions.

I would wait 2 weeks, then go up a bit again. Wait another 2 weeks and so on. Just dont go up if you get symptoms. Go back down a notch if you feel is too much. We all get different things, insomnia, in my case I get sleepy
To a point I cannot function. So keep an eye on any new symptom and give time to resolve before you go up.

 

[Hugo]

I would wait 2 weeks, then go up a bit again. Wait another 2 weeks and so on. Just dont go up if you get symptoms. Go back down a notch if you feel is too much. We all get different things, insomnia, in my case I get sleepy
To a point I cannot function. So keep an eye on any new symptom and give time to resolve before you go up.

Thanks thats helpful advice. I was thinking about double the dose 0.5 to 1 in a couple of weeks then. What do you think is the best pace way to raise the mg then? 0.5 all the way or can you go higher do you think? Its individual ofcourse but I know Im sensetive to 5mg (pain and insomnia) but nearly nothing to 0,5.

 

[Seven7]

Thanks thats helpful advice. I was thinking about double the dose 0.5 to 1 in a couple of weeks then. What do you think is the best pace way to raise the mg then? 0.5 all the way or can you go higher do you think? Its individual ofcourse but I know Im sensetive to 5mg (pain and insomnia) but nearly nothing to 0,5.

To be honest I did it based on easy math and mixing depending how I got the formulation. So whatever made the math work. For me I had to do it like on 0.25 increments since 0.5 was too much for me.

 

[Hugo]

Now a couple of days into the treatment I dont have any negative symtoms. But I have one positive I feel great mentally when I wake up after a night sleep. A serious problem before I did LDN was that everytime I woke up I wanted to just die, that feeling vanished after 20 minutes but still kind of affected the day.

Since the dose Im on is very low its encouraging just to have one positive symptom and no negative. I will raise the dose soon to see what happens.

 

[panckage]

If it interferes with sleep then there is no reason to take it at night. I don't take it at night for that very reason. I find taking it around 6am is the best time for me. I naturally wake up around that time and it seems walking to my fridge and taking a dose actually makes it a bit easier to fall back a asleep after. It also means that the LDN will be out of my system by the time I take my first kratom dose of the day at 10:30am

 

[daisybell]

I've just lowered my dose of LDN. I was taking a high amount - two 4.5mg capsules in the morning and one at night, but I've been feeling worse recently so I halved my morning dose. I don't feel any different... perhaps slightly better if anything. I am thinking about taking a break from it to see it I get more benefit when I resume, but I'm a bit scared of getting worse if I stop.

Has anyone else stopped and restarted? Was this useful or not? Thanks!

 

[Hugo]

I've just lowered my dose of LDN. I was taking a high amount - two 4.5mg capsules in the morning and one at night, but I've been feeling worse recently so I halved my morning dose. I don't feel any different... perhaps slightly better if anything. I am thinking about taking a break from it to see it I get more benefit when I resume, but I'm a bit scared of getting worse if I stop.

Has anyone else stopped and restarted? Was this useful or not? Thanks!

I did but I dont know if it counts, I just tried it a week in a rather high dose. Now Im on it again with a good effect in a very low dose. Did you take a break?

 

[me/cfs 27931]

Just hit the 1 year mark taking LDN. Currently on 9mg/day.

It continues to help with neuro symptoms like stumbling and dropping things, while also aiding sleep. The benefits have decreased a bit, but they are still substantial and this has been my #1 ME/CFS treatment. Nothing (besides pacing) has helped as much as LDN.

I get 50mg tablets (incredibly, covered by Kaiser Permanente), dissolve them in a small bottle of water measured so that 1 teaspoon = 9mg LDN. I keep the bottle in in the fridge.

I just swallow a teaspoon of the liquid before bedtime. Afterwards, I brush my teeth to get the bitter taste out of my mouth.

What an amazing drug. No negative side effects at all.

ETA: One side effect I haven't seen mentioned. After starting LDN, I had a big increase in libido. However, after 3 weeks, this effect went away (for better or worse).

 

[Hugo]

Just hit the 1 year mark taking LDN 9mg/day.

It continues to help with neuro symptoms like stumbling and dropping things, while also aiding sleep. The benefits have decreased a bit, but they are still substantial and this has been my #1 ME/CFS treatment. Nothing (besides pacing) has helped as much as LDN.

I get 50mg tablets (incredibly, covered by Kaiser Permanente), dissolve them in a small bottle of water measured so that 1 teaspoon = 9mg. I just swallow a teaspoon of the liquid before bedtime. Afterwards, I brush my teeth to get the bitter taste out of my mouth.

Its great that its working for you, I am kind of worried for decreasing effect phenomena that some of you seem to experience. Im on 1,5 mg with a rather good effect, it seems to effect a lot of stuff now. Better sleep, wake up feeling is great, taking the edge of my pain, increase my capacity somewhat and even decrease my PEM.

Still I would like it to have a better effect on pain and since I dont have any sideeffect I thought about increasing the dose. But on the otherhand I want to be able to increase the dosage if the effect decreases on 1.5mg. Dont really know what to do. What do you think?

 

[daisybell]

Its great that its working for you, I am kind of worried for decreasing effect phenomena that some of you seem to experience. Im on 1,5 mg with a rather good effect, it seems to effect a lot of stuff now. Better sleep, wake up feeling is great, taking the edge of my pain, increase my capacity somewhat and even decrease my PEM.

Still I would like it to have a better effect on pain and since I dont have any sideeffect I thought about increasing the dose. But on the otherhand I want to be able to increase the dosage if the effect decreases on 1.5mg. Dont really know what to do. What do you think?

I think I would try increasing the dose.. if it's working for you, then perhaps slightly more might work better...
I think grab any benefit while you can!

 

[Hugo]

I think I would try increasing the dose.. if it's working for you, then perhaps slightly more might work better...
I think grab any benefit while you can!

Thanks, its not a bad advice I would think. Are you on a break on LDN now or do you take a smaller dosage? Whatever you do I hope you feel better.

 

[daisybell]

Thanks, its not a bad advice I would think. Are you on a break on LDN now or do you take a smaller dosage? Whatever you do I hope you feel better.

Taking 4.5mg morning and night... I don't want to stop or reduce further. I really need to make an appointment with the doctor to talk it through...

 

[Hugo]

Taking 4.5mg morning and night... I don't want to stop or reduce further. I really need to make an appointment with the doctor to talk it through...

I read from MS forums that that Dr Lawrence recommend taking a break every tenth day and some patients with MS do that protocol. There also seems to be another version with two weeks on and two days off.

 

[Hugo]

Anyone use the original dose of 50mg and used it in water since Naltrexone is water soluble. I read about people doing this since it should be rather easy to use that way.

Most importanly does anyone knows how many days aproximatly naltrexone will have its effect in waterform? Grateful for any answers.

 

[me/cfs 27931]

Anyone use the original dose of 50mg and used it in water since Naltrexone is water soluble. I read about people doing this since it should be rather easy to use that way.

Most importanly does anyone knows how many days aproximatly naltrexone will have its effect in waterform? Greatful for any answers.

As mentioned earlier, I dissolve 50mg Naltrexone tablets in water. I've heard some strain out the tablet filler (which doesn't dissolve), but I don't bother.

I use 3 tablets at a time (150mg) in 80ml of water. Just put 80ml water in a small bottle, drop in 3 tablets, put on the cap and shake it a bit. I also quickly reshake the bottle before each use.

I swallow 1 tsp (~5ml) of the liquid every night, which is about 9mg of naltrexone. I keep the bottle of dissolved naltrexone in the fridge.

A batch lasts roughly 2 weeks before I have to refill, but I have no idea if it loses potency or not. I don't notice any changes.

Haven't had any issues so far. My doctor asked me how I measured it out, so I wrote out the math, but he didn't have any further comments about the procedure I came up with.

(150mg Naltrexone / 80ml water) * (4.9 ml / teaspoon) = 9.2mg Naltrexone / teaspoon.

I save roughly $800 per year this way, compared to paying out-of-pocket for a compounding pharmacy.

 

[Hugo]

As mentioned earlier, I dissolve 50mg Naltrexone tablets in water. I've heard some strain out the tablet filler (which doesn't dissolve), but I don't bother.

I use 3 tablets at a time (150mg) in 80ml of water. Just put 80ml water in a small bottle, drop in 3 tablets, put on the cap and shake it a bit. I also quickly reshake the bottle before each use.

I swallow 1 tsp (~5ml) of the liquid every night, which is about 9mg of naltrexone. I keep the bottle of dissolved naltrexone in the fridge.

A batch lasts roughly 2 weeks before I have to refill, but I have no idea if it loses potency or not. I don't notice any changes.

Haven't had any issues so far. My doctor asked me how I measured it out, so I wrote out the math, but he didn't have any further comments about the procedure I came up with.

(150mg Naltrexone / 80ml water) * (4.9 ml / teaspoon) = 9.2mg Naltrexone / teaspoon.

I save roughly $800 per year this way, compared to paying out-of-pocket for a compounding pharmacy.

Ah ok, sorry I missed that you used it in waterform. Thanks for your answer. 2 weeks must be ok for it to keep it potency I would think.

 

[Sancar]

r

Just hit the 1 year mark taking LDN. Currently on 9mg/day.

It continues to help with neuro symptoms like stumbling and dropping things, while also aiding sleep. The benefits have decreased a bit, but they are still substantial and this has been my #1 ME/CFS treatment. Nothing (besides pacing) has helped as much as LDN.

I get 50mg tablets (incredibly, covered by Kaiser Permanente), dissolve them in a small bottle of water measured so that 1 teaspoon = 9mg LDN. I keep the bottle in in the fridge.

I just swallow a teaspoon of the liquid before bedtime. Afterwards, I brush my teeth to get the bitter taste out of my mouth.

What an amazing drug. No negative side effects at all.

ETA: One side effect I haven't seen mentioned. After starting LDN, I had a big increase in libido. However, after 3 weeks, this effect went away (for better or worse).