LDN low dose naltrexone, what's the latest?

[Kiwi Jack]

What's the latest on LDN? Does it actually work to relieve symptoms of CFS? I notice lots of activity around 2009 and then it drops off. How have patients made out in the meantime, has progress continued?
I began taking it 10 days ago, no response yet, but early days, makes sleep a little worse, and restorative sleep was already abysmal.
Any new or updated information...?

 

[JennyJenny]

What's the latest on LDN? Does it actually work to relieve symptoms of CFS? I notice lots of activity around 2009 and then it drops off. How have patients made out in the meantime, has progress continued?
I began taking it 10 days ago, no response yet, but early days, makes sleep a little worse, and restorative sleep was already abysmal.
Any new or updated information...?

There was a study in 2012? that was very successful and I started it 2013 after reading about both studies. You can't start on 4.5 which is the dose, you need to start in 1/4's or 1/3's of that for 2 weeks at a time. I think I started 1/3 at a time and I would break the capsule and put it in water (lol, I think I actually cannot remember) or you could put in a capsule that you can buy at the drug store or online. I remember, I put it in a little water.

IMO, it did just what they said it would. About a 30% improvement in sleep (it just helps me sleep more calmly but I still have to take Gabapentin, Zolpidem and Tizanadine) as it seems like my brain has less "acitivity" during the night, my pain and flu like symptoms and cognitive problems all improved I would say by just what they stated from the study, by 30%.

 

[Kiwi Jack]

There was a study in 2012? that was very successful and I started it 2013 after reading about both studies. You can't start on 4.5 which is the dose, you need to start in 1/4's or 1/3's of that for 2 weeks at a time. I think I started 1/3 at a time and I would break the capsule and put it in water (lol, I think I actually cannot remember) or you could put in a capsule that you can buy at the drug store or online. I remember, I put it in a little water.

IMO, it did just what they said it would. About a 30% improvement in sleep (it just helps me sleep more calmly but I still have to take Gabapentin, Zolpidem and Tizanadine) as it seems like my brain has less "acitivity" during the night, my pain and flu like symptoms and cognitive problems all improved I would say by just what they stated from the study, by 30%.

Jenny,

Thanks for the feedback. I tried 4.5 then 3.0 and now down to .5, which is probably where I should have started in the first place. I'd take a 30% improvement in sleep. Sleep is a horrible problem for me, wake exhausted, pain, uncomfortable, feels like I've been jolted awake, hell of the way to start the day. I more or less feel the same way when I wake during the night to pee, which I sometimes do often. So I can only assume whatever's going on is disrupting my sleep to the extreme. The odd day (which is very odd, 2 or 3 times per year), I wake feeling refreshed, every symptom disappears and I feel like a million bucks. Oh my, what I'd do for a good night's restorative sleep. I think I know how Michael Jackson felt, willing to try anything including anaesthetic to get a good sleep, poor guy. I wouldn't go that far but I think I know the feeling, craving, that desperate urge.

Are you still on LDN? What was your timing to get to your level of full dose?

Thanks.....

 

[JennyJenny]

I was 2 weeks at 1.5, then 2 weeks at 3.0 and then I could take 4.5.

But, it does not really help me sleep as much as the sleep I get is not as chaotic. It is the Zolpidem and Gabapentin and Tizanadine that is really making me "sleep" (and I use the term loosely) and the LDN seems to make it more peaceful. But not exactly restorative. I know that few times a year you wake up feeling great, it does happen to me from time to time.

I know the going to the bathroom all night too. I did come up with A1c's just skimming diabetic numbers and have now but all cut out sugar and overall eat only whole grains and now I only go 1-2 times a night which is a huge improvement.

 

[Who Me?]

I tried it. I was never able to take it at night. I got zero sleep for 3 days. There is some info around that you can take it in the morning and it'll work with an endorphin rush then but after months I had no benefit.

I think it's individual. I started very slow. .5 mgs. I know someone who started lower than that.

 

[Cort]

Younger - the researcher who did those studies - continues to tout it. He says you can take it whenever you want. A company has been licensed to produce the drug at low cost - hopefully with the possibility of doing FDA trials.

 

[Kiwi Jack]

I've been on LDN 11 days now and I feel really awful each day. I tried a few different doses but the only affect appears to be negative. My non restorative sleep has always been bad and this makes it worse. Last night I thought I would try to combine with a sleeping pill (zopiclone) as perhaps there are benefits outside the sleep problem, but this morning is the worst ever. I have symptoms like a severe flu, and a bad headache which I don't often get. So I'm afraid my 11 day trial with LDN is a bust. I can't afford to have an increase in symptoms since mine are so bad to begin with. I had such high hopes for this drug, the science and feedback seemed so promising. This 14 years has been so horrible, I could never imagine anyone feeling so bad for so long, this is relentless. I'm feeling like this was the final straw, so many failed self experiments, so many Drs with no advice, this just seems hopeless.

 

[Who Me?]

@Kiwi Jack I don't remember when you said you are taking it. And what dose?

I never ever ever ever slept when I took it at night. I also had horrible headaches when i first started. I stopped and restarted at lower doses several times.

What dose and what time are you taking it?


I never noticed anything with LDN which is why I stopped.

 

[Kiwi Jack]

Younger - the researcher who did those studies - continues to tout it. He says you can take it whenever you want. A company has been licensed to produce the drug at low cost - hopefully with the possibility of doing FDA trials.

Cort,

I have no doubt some benefit from LDN, it's obvious in the forums. I would say this falls under the category of everyone is different. Not sure I've felt this bad since last year when I had a kidney stone, which was pretty bad. I wonder if this bad reaction says something? I wonder if a negative reaction to LDN points to an issue not found through normal diagnosis?

Any thoughts?

 

[Kiwi Jack]

@Kiwi Jack I don't remember when you said you are taking it. And what dose?

I never ever ever ever slept when I took it at night. I also had horrible headaches when i first started. I stopped and restarted at lower doses several times.

What dose and what time are you taking it?


I never noticed anything with LDN which is why I stopped.

I tried a few different doses at night and morning, but then the last 2 nights I took 1.5, and I feel the symptoms like the worst flu ever. I must be one of those that does not react well to LDN. Yesterday I almost went to emergency I feel so bad, and now today I don't feel much better. I wish there was a way to flush this out of my system or perhaps the damage is done.

 

[Who Me?]

@Kiwi Jack IMO that's way too high. I started at .5 and had problems. I know someone who started at .25. mg You need to start much lower.
,
If I were you, I'd take a break, then start again much lower. There is no harm starting and stopping till you figure out if you want to take a.m. or p.m.

With anything knew you start really low to hopefully avoid the misery you are in now.

 

[Kiwi Jack]

I wonder if this is a herx reaction? Day 3 of feeling really awful.

 

[Who Me?]

You are taking too much to start. Even if it is herx and I don't know if it is. And if it is back down.

The rule with everything we take is start low and slow. Supplements and meds.

I've told you multiple times you started too high. I was sick on .5 and started snd stopped multiple times. It serves you no purpose to push it. You'll just end up stopping without knowing if it could help.

 

[Kiwi Jack]

You are taking too much to start. Even if it is herx and I don't know if it is. And if it is back down.

The rule with everything we take is start low and slow. Supplements and meds.

I've told you multiple times you started too high. I was sick on .5 and started snd stopped multiple times. It serves you no purpose to push it. You'll just end up stopping without knowing if it could help.

I hear you drill sergeant, I mean sweet sister, hahaha. If/when I start back, I'll start at .25 on alternate days, and increase slowly. So your advice is well noted.

I'm surprised by the number of people who start at a much higher dose, even 4.5 and do so well immediately. But I guess we're all different. I've never had a bad reaction to meds or sups at any level, so this really surprised me. But we live and learn.

I feel good now, released from this reaction, 2 1/2 days of misery is over, thank goodness....

Am I to understand from your earlier post Minx that you no longer take LDN?

 

[Who Me?]

In glad you're feeling better. Bad reactions to things suck.

I had some empty caps I bought on eBay and split mine so that might be a way to go. I just eyeballed it.


I really don't know anyone who started high and was successful. I think that's more of an anomaly than the rule. And there are no rules for us. Every day is a new and wonderful experience. Lol.

I slowly worked up to 3.5 mgs. I had to take it in the mornings. After 6 months I noticed no difference so I stopped.

I'm not opposed to trying it again, but I'm already taking 2 av's so not sure if it would help.

I can't remember if you are getting your's compounded but I got my doc to. Rx 50 mgs. I would crush them and put it in 50 ml water and then use w syringe. It was much cheaper and easier to adjust the dose. In fact you might try that with one of yours. You just need a glass bottle and 10 ml syringe.

 

[Kiwi Jack]

In glad you're feeling better. Bad reactions to things suck.

I had some empty caps I bought on eBay and split mine so that might be a way to go. I just eyeballed it.


I really don't know anyone who started high and was successful. I think that's more of an anomaly than the rule. And there are no rules for us. Every day is a new and wonderful experience. Lol.

I slowly worked up to 3.5 mgs. I had to take it in the mornings. After 6 months I noticed no difference so I stopped.

I'm not opposed to trying it again, but I'm already taking 2 av's so not sure if it would help.

I can't remember if you are getting your's compounded but I got my doc to. Rx 50 mgs. I would crush them and put it in 50 ml water and then use w syringe. It was much cheaper and easier to adjust the dose. In fact you might try that with one of yours. You just need a glass bottle and 10 ml syringe.

That's what I do, buy it online from River's Pharmacy in Manitoba Canada, dilute it myself into 50 ml of water, and draw it out by measure. Not entirely sure the quality of the product, they told me they purchase in the US. I visit my Dr in a few weeks and will invite him into this therapy, not sure if he has any experience. I'm in a remote part of Canada so not very bleeding edge. But if he will rx then I might be able to ensure a better compounded quality and dose. But if he's not into it I'll continue on my own. Same story 14 years. I live in hope. Thanks for the feedback.

 

[Who Me?]

I know people who get them from overseas so what you get can't be horrible.

Let me tell you, I live in southern California and it's hard to find a doc who gets this.

If you can get it compounded I know someone who got liquid so she could adjust the dose more easily.

When I got compounded I got a big rx of .50 mgs to play with. It just got too expensive that way.

 

[Folk]

I started two weeks ago 1.5 for five days and then increased to 3.0. I didn't feel any difference (good or bad) until now.
I was traveling and doing a loot more than I'm used to at home, and the flight back (3 planes, 24 hours) was exausting so I ended up feeling pretty exausted, more brainfog, more GI trouble etc.
But I don't think LDN had nothing to do with it. Now I've been home for three days and I'll increase the dose to 4,5 soon (just a little more resting first ^^) and see what happens then.
Good luck you all!

 

[Folk]

4.5 it is

 

[Who Me?]

@Folk I have discovered that there is a huge difference in my results depending on when I take it.

When I tried it last year i was taking it at 8 a.m. (no sleep if I take it at night). This time I have experimented. I took it at 4 a.m. 6 a.m even 5 a.m. But the perfect time for me is 5:20-5:30 am. The difference in how I feel is huge.

Even if I don't get back to sleep, which I usually don't, I'm awake and up by 7:30. I used to lay in bed in a coma and have to drag myself out. I couldn't function for hours.

I have more energy, mentally and physically. My pain has decreased a huge amount. Inflammation in my brain and lungs are down. Fog is better. It's pretty incredible.

I have to be careful. If I overdo it I can feel things flare, brain fog gets worse, pain gets worse, I get wiped. Yesterday I had to go out at 9 a.m. I was gone 1 1/2 hours and spent the day on the phone, copying, faxing and dealing with a huge problem. I expected to be bad today. I wasn't. I'll see how tomorrow is.

Understand, I'm not going to run laps or even go shopping. But for me, this is pretty big.

I'm currently on 2 mgs. My doctor has told me only to go up to 3.5. I'll increase when I have to make a new batch.