Low-dose Naltrexone articles and experiences

That is exactly what it feels like. No idea if it’s correct or not, but that’s the way I would describe it.

Try taking it in the morning/afternoon? I can’t take it less than 2 hours before bedtime or I can’t sleep at all.

 

I’ve increased to 2.5 mg 3 days ago. It seems that every time I increase, I get a « high » for a few days, then it stops. Like today, I sort of feel better even if I had some blood drawn twice.

It hasn’t lasted for now, but it’s still very early so I can’t help but still hope this will give me my life back. Or part of it.

 

Update. I started 3.0 mg today. My depression is bad, but it is probably just a coincidence since it has happened every spring for the last 4 years.

On the other hand, the pain is still a whole lot better. I still have some, but it’s minor. I think my pain was fibro pain, and not ME pain. Not that it matters.

My energy levels have been good also for the past two days. Yesterday I have been able to rake leaves and mow the lawn (not at once, but still). Maybe 45 minutes of raking and 10 minutes of mowing, with lots of rest in between. And today I had to move 3 sets of car tires and it was not a problem. I didn’t crash afterwards. I slept in the afternoon but I often do.

I this the start of something ? Time will tell.

 

Am continuing to take LDN aiming to get to 4.5 daily but i’ve hit a few problems. Stopped/ reduced for a while because of sleep problems but that has improved apart from vivid dreams which I can remember! I can manage that.

Saw doctor last week and made next step up to 2.5 daily, but have had severe Diarrhea, a bit headachy. Anyone else had this reaction? Would like to continue if possible because I had a transient strong improvement in cognitive functioning in early stage. Have been really unwell today so need to decide whether to continue.

Grateful for any responses.

ETA: how are you @Dechi?

 

I haven’t had any, quite the contrary, my stools are now firm and they hadn’t been for two years. But in all honesty, it could also be due to a garlic/alcohol mixture I take every day. Or drinking kefir.

I’m now at 3,5 mg, but I have been overdoing it the past weeks and crashed. I also had severe gastric problems on top. Today was my first okay day for a good two weeks, so I’m happy about that. Thank you for asking. I hope LDN works for you. Right now I can’t tell if it’s working for ME but it’s taking away a layer of fibro pain.

 

Thanks @Dechi. I hope your good results with LDN return.
I’m hoping it will help with pem, OI, cognitive issues not so much pain because I don’t have fibromyalgia. I’ll see how I get on later and decide whether to have a break or continue right through.

 

https://www.ldnresearchtrust.org/how-naltrexone-works

Found a link that describes how LDN works and that some people respond by Diarrhea/ nausea which fits my symptoms, and advises slow increases. I am already following this, only increasing by 0.5 at a time, so have decided to continue today.
If I have the same response as yesterday, ( it was severe), i’ll have to rethink.

 

@Binkie4 Maybe you’re just passed your optimal dose and need to decrease and stay there.

How are you today ?

 

@Dechi
Thanks for asking. I continued at 2.5 yesterday and Saturday, and fingers crossed got away with it. Won’t make another increase for a week or so then try again to add 0.5.
A nurse came out on Fri and am waiting for results of samples because I had a rash as well as gastric symptoms. Diagnosis is confusing.
Hope you continue with ok days.

 

For me it’s never a straight line. Okay days, bad days, I never know.

Funny I’ve been having gastric problems too. Severe enough to have me worried.

 

@Dechi
Hope you improve soon. Are you connecting your gastric problems with the LDN? I don’t know what to make of it but it’s calming down and i’ve Kept going. I will do the next increase very carefully. I so want it to work, to give me some improvement.

 

Hi everyone @Dechi

Am really struggling so think I need to stop for a while. Stool samples showed no infections and 2 days with no LDN brought an improvement but restarting today seems linked with diarrhoea, aching, generally unwell.
Am disappointed because Dr Bansal really wanted me to try it at 4.5 and I know some people here have had success.

I persisted through the side effects of acyclovir, and have been taking 800 x2 daily for at least a year but no improvement discernible.
Nor for the other supplements I take.
Earlier in the week when on 2.5, I had a brighter afternoon, word finding, clarity in thinking etc improved.
Hate to give up.
Anyone else have any experience to offer?

 

I remember distinctly having stomach cramps and discomfort when I started it. I’ve been on LDN for many years now. Various doses - initially 4.5mg once a day, then twice a day, then 2 capsules in the morning and one at night. Then back down to 4.5mg twice a day and now I only take one capsule in the morning!

I believe it takes the edge off the pain - but truthfully I’m not sure anymore. I certainly noticed improvement when I started it. However my health is slowly deteriorating so it’s hard to know if the LDN actually does help now. I’m not ready to stop it though!

 

Thanks @Daisybell .Glad you have had some benefit. I have the frustrating feeling that some benefit might be around the corner but I can’t get round the corner!

Have made the decision to stop for a week and restart at 1.5 or 2mg, and see what happens.

I read across the way that different levels work for different people ( less may be more) so i’ll bear that in mind too. More reading to do.

ETA:https://www.s4me.info/threads/david-tuller-trial-by-error-this-year’s-us-clinician-summit.8890/. Post #19

I posted about 6-7 weeks ago that I was doing well going low and slow, up to 2mg. I actually forgot one episode of stomach upset during this time which passed very quickly. I did ok on 2mg for the next month but then did the raise to 2.5 which has caused severe symptoms. For anyone trying LDN, it is good to read the other thread as well. There is at least one other person who had severe gastric symptoms.

 

I use transdermal LDN from a compounding pharmacy and have never had any gastric symptoms.

 

Maybe it’s the absorption through the skin.
Mine is a tablet from Dicksons which has to be dissolved using a syringe. Do you know what your transdermal dose equates to @perchance dreamer? Did you titrate up or go in at a specified level?

 

I started off at 2 MG and slowly went up to 4 MG. I apply it in areas with more fat such as the inside of my thighs and the underside of the top of my arms. I was told to alternate sites so I apply LDN to one of those 4 areas before bedtime.

 

Thank you for that @perchance dreamer. If I can’t handle the dissolved LDN, I will ask about the transdermal variety. It may be metabolised in a different way which I may find tolerable.

 

Reporting back on LDN.

Restarted this week after a 2 week break to let my stomach settle down. During that 2 weeks had lab results back which showed no infection at the time of the severe gastric upset.

Restarted at 2.0, on Wednesday, which I had successfully tolerated for about 6 weeks before the unsuccessful rise to 2.5. Just one dose and 2 hours later, the Imodium was needed. I had forgotten about the sleeplessness until 6am the next morning when I realised why I had been lying there awake all night. Eventually had 2 hours . Felt unwell on Thurs, nauseous, headachy and on Friday despite taking no more.

This drug had some positive effects so had a long phone call with Dickson's and found it was available as sublingual drops. They also said they had patients who were on 0.5 mg only, so maybe 2.0 is my limit. Have written to my prescriber who I don’t see till next month for a prescription.

Will update when there is any more news. Good to hear how others are getting on. How are you doing @Dechi .

 

@Binkie4 I hope you can sort this out and find a way to make it work.

I am kind of stuck at 3.5 mg, taken in the morning. I tried 4.0 mg but it made me sleep too much during the day, so I took it at night. And then I lay awake and got very little sleep, so I went back down to 3.5 in the morning.

I just saw my infectious disease specialist and he said I needed to try at least 2 weeks at night before giving up, to let my body adjust. He says I need to go up to 5.0 mg, because that’s where studies show the best results.

So today I increased to 4.0 mg in the morning. We’ll see if I can tolerate it better during the day and if not, then I’ll tough it out 2 weeks at night.

It’s funny though how it makes me sleep more during the day (and I still sleep at night) when I take it in the morning but it actually keeps me from sleeping if I take it at night. It doesn’t make sense...