Low dose Naltrexone

[MizEllie]

I've started taking LDN at 1.5 mg at night. Initially, I felt wonderful but now I'm in PEM. The cancer survivor who told me about it says I need to increase the dosage.

Is anyone using LDN in their treatment regimen that can advise me?

 

[Hippymum]

You've possibly overdone it due to feeling so much better. You still need to pace.

Rest up and get back to baseline then see how the LDN is working for you. If you feel it's not working as well as it could be try raising your dose by 0.5mg every 2-4 weeks until you reach the dose that works perfectly for you.

I've been on it for 27 months and it's been nothing short of a miracle for me.

 

[TAllen]

I've started taking LDN at 1.5 mg at night. Initially, I felt wonderful but now I'm in PEM. The cancer survivor who told me about it says I need to increase the dosage.

Is anyone using LDN in their treatment regimen that can advise me?

 

[TAllen]

You can gradually increase the dose to 4.5 in .5 increments. I couldn't get higher than 2.5 and 1.5 worked fine. LDN has no effect on PEM. So if you have no headache and feel ok on 1.5 I'd stay there. Taking thiamine/riboflavin/amino acids eliminated my PEM. Likely genetic but cheap test to see if it helps. You'll know within days. 200-300mg B1/B2 and I used Solgar Essentila AA. Here's the details: https://www.healthrising.org/blog/2...-pem-chronic-fatigue-fibromyalgia-long-covid/ Hope it works for you!

 

[MizEllie]

You've possibly overdone it due to feeling so much better. You still need to pace.

Rest up and get back to baseline then see how the LDN is working for you. If you feel it's not working as well as it could be try raising your dose by 0.5mg every 2-4 weeks until you reach the dose that works perfectly for you.

I've been on it for 27 months and it's been nothing short of a miracle for me.

Thanks so much for the guidance. I will talk to my NP and see about getting 0.5 capsules so I can experiment.

 

[MizEllie]

You can gradually increase the dose to 4.5 in .5 increments. I couldn't get higher than 2.5 and 1.5 worked fine. LDN has no effect on PEM. So if you have no headache and feel ok on 1.5 I'd stay there. Taking thiamine/riboflavin/amino acids eliminated my PEM. Likely genetic but cheap test to see if it helps. You'll know within days. 200-300mg B1/B2 and I used Solgar Essentila AA. Here's the details: https://www.healthrising.org/blog/2...-pem-chronic-fatigue-fibromyalgia-long-covid/ Hope it works for you!

So headache is a sign that I'm taking too much LDN? I put nutritional yeast, protein powder, greens, kombucha or kefir, and electrolytes in a smoothie I make most days. I think I'm okay as far as B vitamins and AA go, however, I appreciate the link and advice.

 

[mangus]

I've started taking LDN at 1.5 mg at night. Initially, I felt wonderful but now I'm in PEM. The cancer survivor who told me about it says I need to increase the dosage.

Is anyone using LDN in their treatment regimen that can advise me?

Hi. I have been taking LDN for around 12 months and slowly increasing the dose. Everyone is different and for some people they only need 0.1mg to notice a difference. I am currently taking 7mg which is quite high but I think I am finally noticing a difference. I can manage a bit more and PEM is less in severity and length. My advice is to listen to your body, prepare to be going up and down in dose until you find the 'sweet spot' and be patient. Check out facebook for groups that are specifically me/cfs and LDN too. Good luck

 

[Creekside]

LDN is tricky in that its optimun dosage is fairly narrow, and varies with the individual. 2.25 mg had full effect for me, but 2.0 had almost no effect. Above 6 mg it became less effective too. I didn't have any noticeable negative effects from LDN, even when I tried over 6 mg.

No need to buy .5 mg capsules; just open one up and add/remove a little bit to find the right dose for you.

FWIW, I found that taking the powder sublingually required 1/3 lower dose. However, LDN was blocking my neurologically-originated pain, so if you're taking it for some other symptom, sublingual dosing might not work the same. Also, I found that a dose lasted ~36 hrs, so I alternated morning and evening doses (I prefer minimizing the drugs I use).

LDN was great for blocking that pain. Before LDN, walking was painful. The day after my first dose, I went for the walk I'd tried the previous day, kept going, went up a steep hill and still felt pain-free, kept going for another couple km's, before not trying to push it any further, even though I reveled in being able to hike pain-free again. After 2+ year of LDN, I no longer needed it (pain had vanished).

 

[MizEllie]

Thanks for adding to this thread.

I'm finding LDN is great for fibro pain but has no effect (yet) on my neuropathic pain which is pretty bad. I'm maxed out on gabapentin and am on lamotrigine ER 25 mg in the am and 50 mg in the evening. The neuro pain is from a severe injury to my lower leg. I'm also being biopsied for small muscle neuropathy later this month.

Initially, I had a period lasting about a month to six weeks after starting LDN where I felt great with more energy and much less pain. That feeling started about a couple of days to a week after initiating treatment but is gone now. I've been on 1.5 mg since May 1, 2023. My NP is open to increasing the dosage.

 

[GforGeorgie]

I take 4.5mg of LDN each evening and it's definitely calmed down the inflammatory response that was occurring in my spinal cord. A big relief to have that managed so I can get on with life. I had one flare last week for the first time in 6 months so would consider upping my dose if that happens again. It took about 3 months to build up to 4.5 and feel the difference.

What also helped with my fibro pain was identifying all of my food allergies (gluten, dairy, nightshades and MSG). Importantly, it seems that gluten was driving leaky gut which was contributing to my PEM. Nightshades cause chronic inflammation within hours and shooting nerve pain for me. What was difficult is that for years I would take one or two of these out together and not notice a huge change but it wasn't until I did a major elimination test and took everything that was possibly an issue out, did I notice the big difference.

Stabilising my blood sugar also helped a lot.

Taking Oral Rehydration Solution most days helped with muscle pain and orthostatic intolerance.

After 20 years of fibro and ending up on disability, I'm now pain free, full of energy, working again and doing strenuous exercise most days. Find your root causes then treat them. The info here on Health Rising is the best I've found.

 

[MizEllie]

I take 4.5mg of LDN each evening and it's definitely calmed down the inflammatory response that was occurring in my spinal cord. A big relief to have that managed so I can get on with life. I had one flare last week for the first time in 6 months so would consider upping my dose if that happens again. It took about 3 months to build up to 4.5 and feel the difference.

What also helped with my fibro pain was identifying all of my food allergies (gluten, dairy, nightshades and MSG). Importantly, it seems that gluten was driving leaky gut which was contributing to my PEM. Nightshades cause chronic inflammation within hours and shooting nerve pain for me. What was difficult is that for years I would take one or two of these out together and not notice a huge change but it wasn't until I did a major elimination test and took everything that was possibly an issue out, did I notice the big difference.

Stabilising my blood sugar also helped a lot.

Taking Oral Rehydration Solution most days helped with muscle pain and orthostatic intolerance.

After 20 years of fibro and ending up on disability, I'm now pain free, full of energy, working again and doing strenuous exercise most days. Find your root causes then treat them. The info here on Health Rising is the best I've found.

Thanks for your input. Lots of great advice from you and others here. I really appreciate it. Not quite ready for a complete elimination but will keep it in mind.

 

[NYStew]

I take 4.5mg of LDN each evening and it's definitely calmed down the inflammatory response that was occurring in my spinal cord. A big relief to have that managed so I can get on with life. I had one flare last week for the first time in 6 months so would consider upping my dose if that happens again. It took about 3 months to build up to 4.5 and feel the difference.

What also helped with my fibro pain was identifying all of my food allergies (gluten, dairy, nightshades and MSG). Importantly, it seems that gluten was driving leaky gut which was contributing to my PEM. Nightshades cause chronic inflammation within hours and shooting nerve pain for me. What was difficult is that for years I would take one or two of these out together and not notice a huge change but it wasn't until I did a major elimination test and took everything that was possibly an issue out, did I notice the big difference.

Stabilising my blood sugar also helped a lot.

Taking Oral Rehydration Solution most days helped with muscle pain and orthostatic intolerance.

After 20 years of fibro and ending up on disability, I'm now pain free, full of energy, working again and doing strenuous exercise most days. Find your root causes then treat them. The info here on Health Rising is the best I've found.

What pharmacy did you use please?

 

[MizEllie]

Thanks for adding your experience with LDN, as well as diet. Nightshades only recently started giving me grief. I was diagnosed in 2007.

 

[MizEllie]

What pharmacy did you use please?

I get it from the Mayo Hospital pharmacy in Rochester, MN.

 

[GforGeorgie]

What pharmacy did you use please?

I am in Australia. My doctor prescribes it and my local pharmacy compounds it for me.

 

[MizEllie]

FYI--I live in the United States.

 

[Sunnyaunt]

I’m in California. I use an online pharmacy and doctor (ageless.com). I started taking LDN back in June at 0.5mg and didn’t see any improvement. I upped the dose to 1mg. Still nothing. I stopped seeing the doctor I was seeing so finished my course of LDN and stopped, thinking nothing of it. Within a week sleep was all but impossible. So at 3am, having made the connection, I ordered LDN online. I’ve now been taking it since late July. Initially I was titrating the dose up in 0.5mg increments to my total now of 4.5mg. It’s really subtle but sleep for me is better, not amazing but better. I don’t have so much neuro inflammation - headaches, noise and light sensitivity. This ME/CFS is still new for me. January/February this year was when I got to the severe end of moderate - housebound for sure, somewhat bed bound for some days. I’m more functional now but still have to pace carefully.

 

[HJR]

I've started taking LDN at 1.5 mg at night. Initially, I felt wonderful but now I'm in PEM. The cancer survivor who told me about it says I need to increase the dosage.

Is anyone using LDN in their treatment regimen that can advise me?

Increasing the dose might help. But not everyone does well at higher doses. I have had to increase very slowly and find 2 mg to be effective for me. When I increased the naltrexone from 1 mg to 3 mg over the course of a month or so, I felt worse until I brought the dose down to 2 mg. I find that naltrexone interacts with my sleep meds(zopiclone or trazodone), so that I have had to decrease the dosage of the sleep meds to avoid grogginess. Prior to LDN, I took 7.5 mg zopiclone before bed without much next-day grogginess. Once I started taking 2 mg naltrexone before bed, I found myself zombified and exhausted the following day. This happened consistently until I reduced the zopiclone by 50% (3.75 mg). I have found very little information available on how LDN might interact with sleep meds.
I also found a similar effect with LDN and trazodone. I had to reduce trazodone from 100 mg to 75 mg to avoid next day grogginess and fatigue.
I have no idea whether my observations apply to others as well, but I suspect they probably do for at least some.

 

[MizEllie]

I’m in California. I use an online pharmacy and doctor (ageless.com). I started taking LDN back in June at 0.5mg and didn’t see any improvement. I upped the dose to 1mg. Still nothing. I stopped seeing the doctor I was seeing so finished my course of LDN and stopped, thinking nothing of it. Within a week sleep was all but impossible. So at 3am, having made the connection, I ordered LDN online. I’ve now been taking it since late July. Initially I was titrating the dose up in 0.5mg increments to my total now of 4.5mg. It’s really subtle but sleep for me is better, not amazing but better. I don’t have so much neuro inflammation - headaches, noise and light sensitivity. This ME/CFS is still new for me. January/February this year was when I got to the severe end of moderate - housebound for sure, somewhat bed bound for some days. I’m more functional now but still have to pace carefully.

Thanks for your story, Sunnyaunt. I’m starting to up-titrate from 1.5mg—waiting for it to arrive from the pharmacy. Where do you get your online LDN? I’m about where you are on a day to day basis hoping to significantly improve on higher LDN doses.