Low dose Naltrexone

[Sushi]

I have wanted many times to increase my dose because I want to get better faster (of course!), but a larger dose just doesn't seem to work for me. For me:

• Too much LDN = daytime sleepiness, sad/down for no reason, and difficulty doing anything
• Not enough (this has happened when my LDN gets old and thus less effective) = more pain, volume turned up

I hope this helps!
Penny

Hi Penny,

I've been taking LDN for about 2 1/2 years and the way I know my dose is too high is daytime sleepiness. You may not need to take a higher dose. You may be utilizing it in a different way. I think with LDN, the only real rule is whatever works for you.

Best,
Sushi

 

[moonchild]

that's fantastic! (well, hopefully it's a good sign) best of luck, and keep us posted on your progress?

I just took the tiniest amount of a tablet, just some powder on the end of a pin. I can already feel it! I will definitely be careful with this stuff. Anything that instantly feels like a form of relief has some promise to it I think.

 

[moonchild]

thanks penny, this is really helpful. you always hope to be one of those people who gets a miracle cure overnight with no side effects but any improvement at all sounds good to me! anything that could turn down my pain a notch or two would make a huge difference to my quality of life. and anything that stops me taking more other medications i particularly like.

i'm someone who always tends to do everything quickly in the hopes of getting where i want to go faster, so your advice is very valuable. and it's truly amazing and fascinating that 0.5 makes a tangible difference. got to be doing some pretty powerful things if you can feel such a small difference.

really do hope that it's onward and upward for you from here.

Hi Moonchild,
I've been taking LDN for about 9 months. Most of that time I have been taking .5mg per night.

I had an immediate small (but noticeable) improvement in pain levels and OI. For pain, it did not resolve any specific pain (muscle, joint, bone, etc.) but felt like it turned down the volume of my pain by a degree or two. Which makes sense with the idea of increasing endorphin production. I also noticed that within the first month my PEM (PENE) seemed reduced - I didn't crash even when I knew I should have. Though I should say that my energy was not noticeably better. I think that was about it for the first 5 months or so.

In the last 4 months I've had some significant improvement with health overall; pain, energy, functioning. LDN isn't the only thing I take, and I don't think it's the only thing that has helped, but I believe it has been one of the most important pieces of my treatment. It might be the most important thing.

I have wanted many times to increase my dose because I want to get better faster (of course!), but a larger dose just doesn't seem to work for me. Even what seems like a tiny increase (.55mg instead of .5) left me feeling sleepy, grumpy and down the next day. I do think the low and slow method is the way to go, both to avoid side effects and because I think it gives you more time to become familiar with how you're body reacts to it. For me:

• Too much LDN = daytime sleepiness, sad/down for no reason, and difficulty doing anything
• Not enough (this has happened when my LDN gets old and thus less effective) = more pain, volume turned up

It does seem to be continuing to help me, slowly, bit by bit, over time. I've seen a number of people on the LDN yahoo group (most of whom take it for MS) say that it can take months to years to see the full benefit. And I'm thinking that's probably true. Or maybe I'm hoping! I would love to keep seeing more benefits and improvement after time goes on.

I hope this helps!
Penny

 

[L'engle]

that's fantastic! (well, hopefully it's a good sign) best of luck, and keep us posted on your progress?

Thanks, moonchild I was in high spirits today, which is in itself a welcome sign. I'm not normally depressed but often feel 'flat'. I think I will wait a day to take LDN again, as I don't want insomnia to catch up with me. I've felt a bit of pressure in my head off and on today but nothing very bad.

Do people have a specific preference about taking it at night or in the morning?

 

[penny]

You may not need to take a higher dose. You may be utilizing it in a different way. I think with LDN, the only real rule is whatever works for you.

Hi Sushi,
I totally agree. I think .5mg is my dose, and I'm not at all worried that it's not higher. It's just that the "more is better" fallacy (which is so much part of our culture) is hard to completely shake, so occasionally I think "well, maybe a little more would be a little better", and then I try it and feel like crap for a day and smack myself on the forehead and go back to .5mg. Lesson learned once again

And it's good to know that you get day time sleepiness with too much LDN too, that might be a good sign for others to watch out for when figuring out their dose...
Take care,
Penny

 

[penny]

thanks penny, this is really helpful. you always hope to be one of those people who gets a miracle cure overnight with no side effects but any improvement at all sounds good to me! anything that could turn down my pain a notch or two would make a huge difference to my quality of life. and anything that stops me taking more other medications i particularly like.

Yeah, it certainly wasn't an overnight miracle cure, but it really is amazing how 'big' the small improvements can feel when you're really ill!

i'm someone who always tends to do everything quickly in the hopes of getting where i want to go faster, so your advice is very valuable. and it's truly amazing and fascinating that 0.5 makes a tangible difference. got to be doing some pretty powerful things if you can feel such a small difference.

really do hope that it's onward and upward for you from here.

Me too! I hate waiting and have to make a real effort to be patient. I did try and keep a pretty detailed daily log of activity levels and pain symptoms, it was sometimes useful in seeing very small changes over time. So I might not have felt like I was a lot better, but then if I looked back at what I was able to do a month or two ago, and how sick I felt, there was some evidence of improvement.

I hope the LDN (or something, anything!) brings you some improvement too : )

 

[mermaid]

I have been reading through this thread but only up to page 40 so far. I have cheated and gone on to the end of it to join in the chat...
I started LDN around 2 weeks ago, and because I knew I am very sensitive to things and have a lot of gut issues I started very low at around 0.5 mg, but though I could just about cope with the sleep disturbance, unfortunately last week the side effects cranked up to gut pain, diarrhoea, and the first migraine in 3 mths (since I cut out all gluten).

I am still feeling lousy though I stopped taking it on Tues pm to allow my system to recover. I am surprised that it's taking me this long and feel worse than I have for ages (ironically I had just started to feel a bit better before starting LDN!).

I don't want to give up though, so am planning to restart at maybe only 0.25mg ..... I have heard of some people dosing every other day - anyone here doing that and know why that is done? I think I read that some people maybe have problems clearing it out of their system. Do you think it might help the side effects if I do that and start low?

Oh and the sleep disturbance wasn't as I expected. I usually sleep really well, but it's like I am sleeping at less deep level, and waking earlier. I feel a bit concerned that my sleep hasn't gone back to normal even after stopping the LDN.

 

[jstefl]

Mermaid:

I have been taking LDN for just over a year now. I needed to start at a .2 mg every other day dose to avoid any bad effects. The whole point of LDN is that it must clear your system in a few hours. A larger dose does not help, it makes things worse.

I went to the every other day routine to make certain that all of the LDN had cleared my system before taking more. I increased my dose by .1 mg about every two weeks, and when I got up to .6 mg, I added a .1 mg dose on the "off" days . Eventually I got to where I am today, taking a 2 mg dose every day. I have tried to take more, but my body tells me no. Since I feel benefits at the 2 mg dose, I am happy to remain there.

I have also found that I do better taking it in the morning. I recently tried switching to evenings, but that just didn't work for me, so its back to mornings.

Too large a dose can cause very unpleasant things to happen, so please go slowly. I have found that LDN is one of the most helpful drugs that I have tried, so please don't give up. Slow and staeady wins this race.

John

 

[mermaid]

Thank you John. That's very helpful to know. Before I started I knew that people with ME/CFS often started low, but I didn't know how low that might be, and I never thought of doing it alternate days.

I don't want to give up so easily, as I know it's helped many people so I will start again next week and feed back from time to time. I will see how I do at night, and maybe try mornings instead if I carry on with the poor sleep.

 

[Ocean]

I just took the tiniest amount of a tablet, just some powder on the end of a pin. I can already feel it! I will definitely be careful with this stuff. Anything that instantly feels like a form of relief has some promise to it I think.

What did it feel like, what kind of relief? I don't really have regular allover body pain from my CFS. The worst pain I get from it is usually in a flare or rib pain that I do have pretty much daily. I wonder how much LDN helps with other non-pain symptoms. If all it's doing is increasing endorphins, per Sushi's explanation, what physical symptoms would it help with? Or is it just the feeling of well being that comes from endorphins or is there actual genuine physical improvement, rather than just the perception of well being? Not sure if that makes any sense.

ETA: I found this site saying it helps boost the immune system
http://www.lowdosenaltrexone.org/index.htm#How_does_LDN_work_
If that is true, what about the idea that some of us may have overactive immune systems? Might LDN cause some to worsen in that case? I know I felt much improvement on corticosteroids, which dampen the immune system, so I wonder if something that boosts it might have the opposite result and make me worse.

 

[Sushi]

...I wonder how much LDN helps with other non-pain symptoms. If all it's doing is increasing endorphins, per Sushi's explanation, what physical symptoms would it help with? Or is it just the feeling of well being that comes from endorphins or is there actual genuine physical improvement, rather than just the perception of well being? Not sure if that makes any sense.

ETA: I found this site saying it helps boost the immune system
http://www.lowdosenaltrexone.org/index.htm#How_does_LDN_work_
If that is true, what about the idea that some of us may have overactive immune systems? Might LDN cause some to worsen in that case? I know I felt much improvement on corticosteroids, which dampen the immune system, so I wonder if something that boosts it might have the opposite result and make me worse.

I believe it modulated the immune system, not boosts it. My immune system also tested as overactive, yet LDN has helped me. For me and others, it has not just been a perception of well being--I have found more stamina and a better functioning immune system...and much better sleep after getting past the insomnia stage.

It also helps with inflammation and is said to improve NK cell numbers and function. The endorphins apparently translate into immune factors, but I can't really explain the science. There is a book about it and the website you quoted has good information.

Best wishes,
Sushi

 

[Ocean]

I believe it modulated the immune system, not boosts it. My immune system also tested as overactive, yet LDN has helped me. For me and others, it has not just been a perception of well being--I have found more stamina and a better functioning immune system...and much better sleep after getting past the insomnia stage.

It also helps with inflammation and is said to improve NK cell numbers and function. The endorphins apparently translate into immune factors, but I can't really explain the science. There is a book about it and the website you quoted has good information.

Best wishes,
Sushi

Thanks Sushi. Can you tell me which types of tests show overactive immune system? I'd be very curious if mine shows that way as it certainly feels that way.

 

[Sushi]

Thanks Sushi. Can you tell me which types of tests show overactive immune system? I'd be very curious if mine shows that way as it certainly feels that way.

Hi Ocean,

I PMed you.

Best,
Sushi

 

[L'engle]

What did it feel like, what kind of relief? I don't really have regular allover body pain from my CFS. The worst pain I get from it is usually in a flare or rib pain that I do have pretty much daily. I wonder how much LDN helps with other non-pain symptoms. If all it's doing is increasing endorphins, per Sushi's explanation, what physical symptoms would it help with? Or is it just the feeling of well being that comes from endorphins or is there actual genuine physical improvement, rather than just the perception of well being? Not sure if that makes any sense.

ETA: I found this site saying it helps boost the immune system
http://www.lowdosenaltrexone.org/index.htm#How_does_LDN_work_
If that is true, what about the idea that some of us may have overactive immune systems? Might LDN cause some to worsen in that case? I know I felt much improvement on corticosteroids, which dampen the immune system, so I wonder if something that boosts it might have the opposite result and make me worse.

I think it is an immune modulator rather than an immune stimulant, from what I've read.

It's hard to describe the feeling of relief, just more normal, I guess, less heavy in the body, less flat in the brain. I've had insomnia with it so far though so I am really going slow. I had insomnia last night aft having taken it the day before yesterday, so every three days may be the limit for me at the moment. Right now I don't feel great because of some missed sleep. I don't know how long the insomnia effect will last so I am not pushing to increase the amount I take anytime soon.

 

[Ocean]

I think it is an immune modulator rather than an immune stimulant, from what I've read.

It's hard to describe the feeling of relief, just more normal, I guess, less heavy in the body, less flat in the brain. I've had insomnia with it so far though so I am really going slow. I had insomnia last night aft having taken it the day before yesterday, so every three days may be the limit for me at the moment. Right now I don't feel great because of some missed sleep. I don't know how long the insomnia effect will last so I am not pushing to increase the amount I take anytime soon.

Thanks L'Engle. I hope the insomnia will wear off soon for you. Do you notice any less PEM too with the LDN?

 

[L'engle]

Thanks L'Engle. I hope the insomnia will wear off soon for you. Do you notice any less PEM too with the LDN?

Thanks, Ocean. I finally had a good night's sleep last night, 2 days after taking it. It's hard to say if I had more PEM as I just increased my activity level a bit when I felt better, so then crashed anyway! I am awesome at pacing (not)

My brain fog hasn't shown signs of improving yet and I am still resting a lot. It seems I got to do more than average over the last few days though. I haven't decided whether to take a bit more LDN today or to get another long sleep in before the next 'adaption phase' I really hope the insomnia part doesn't continue.

 

[jstefl]

I really suggest taking LDN in the morning, at least at first.

I have been taking LDN for over a year, and still don't do well taking it at night. I am only up to 2 mg a day, but am enjoying significant benefits. I have tried taking it in the evening and taking larger doses, but neither one has worked for me.

I feel that it isn't necessary to suffer to get used to LDN. Start with very tiny doses, and increase the dose very slowly. Take it when your body allows, and be very patient. LDN is not a miracle cure, but, if you are patient, can improve your life a little. Trying to force LDN to work in a hurry doesn't work.

John

 

[L'engle]

I really suggest taking LDN in the morning, at least at first.

I have been taking LDN for over a year, and still don't do well taking it at night. I am only up to 2 mg a day, but am enjoying significant benefits. I have tried taking it in the evening and taking larger doses, but neither one has worked for me.

I feel that it isn't necessary to suffer to get used to LDN. Start with very tiny doses, and increase the dose very slowly. Take it when your body allows, and be very patient. LDN is not a miracle cure, but, if you are patient, can improve your life a little. Trying to force LDN to work in a hurry doesn't work.

John

This is a good plan. I'm going to wait until at least tomorrow to take another bit of LDN.

 

[Ocean]

Does it affect mood? I don't do well with meds that do. I guess since it's sort of like the opposite of an opiate, and those affect mood, I'm wondering if this does as well. Glad you slept a bit more L'engle.

 

[Xandoff]

Hi Angel,

I too did pain meds for years and finally went off them all. Managing ME CFS pain with opiates was a constant struggle. In many ways the opiates allowed me to be more active and deny many of the faces of this horrible disease. I just started LDN last week at 1.5 mg to start and it is helping me get better sleep.

I see you live on an Island of Florida, I was born in Coral Gables and now live in Northern Vermont. The winters (or any weather changes) wreak havoc with my pain. I have spinal stenosis, DDD and a host of bad back stuff. I guess I was a gradual onset person, Pain was my first symptom. I had neck surgery (cervical dysectomy with fusion wich launched my ME CFS into orbit)

If you don't mind me asking do you have any thoughts to share on why some of us experience such high levels of pain?

Better Health!