Low-dose Naltrexone articles and experiences

Merged thread

Low-Dose Naltrexone: Is it a wonder drug or snake oil? (LDN)

In October 2003, Linda Elsegood was diagnosed with secondary progressive multiple sclerosis, and told that doctors could do nothing more for her.

“That was devastating,” she says. “I was living, but it couldn’t be called living.”

Then she found out about a treatment using a low dose of a drug called naltrexone (LDN) from other MS sufferers. Elsegood found a prescribing doctor, and began taking it. “After three weeks, LDN tuned in that television set. I could see properly. I could begin to hear better. Cognitively, I could start to understand. It was amazing. Totally, totally amazing.”

Link here: https://medium.com/s/story/is-it-a-wonder-drug-or-snake-oil-c5b4012c097e
 
Last edited by a moderator:
I have access to LDN through my GP who was willing (after some cajoling) to prescribe it.
Sadly, it needs to be compounded and it is not covered by insurance. I can't afford to take it as a result.

I would cost me CDN $96 a month/30 capsules.
 
LDN had made a huge difference for me, I’d say it has probably increased my level of physical functioning by 10-20%. I would never have survived this fall without a major crash if not one it.

Not that much of an effect on the brain fog, but that’s probably because the last six months while on LDN have also been very busy, and all my energy has been spent keeping my head above water. I’m excited for the new year when things will hopefully calm down a little and I might have more brain power to spare:)

I agree with Webdog, everyone with ME should have the chance to try it. Of course it doesn’t work for everyone, but even so.
 
Snowdrop said:
I have access to LDN through my GP who was willing (after some cajoling) to prescribe it.
Sadly, it needs to be compounded and it is not covered by insurance. I can't afford to take it as a result.

I would cost me CDN $96 a month/30 capsules.
Click to expand...
Insurance wouldn't cover compounded LDN for me and that got expensive fast. So I convinced my doctor to prescribe covered 50mg Naltrexone tablets, which I dissolve in water for the correct dosage (discussed in other threads).

Even if insurance won't cover, 50mg Naltrexone tablets are fairly inexpensive to purchase. However, a prescription is required in the US, though I've heard it said there are ways around this.
 
Webdog said:
Insurance wouldn't cover compounded LDN for me and that got expensive fast. So I convinced my doctor to prescribe covered 50mg Naltrexone tablets, which I dissolve in water for the correct dosage (discussed in other threads).

Even if insurance won't cover, 50mg Naltrexone tablets are fairly inexpensive to purchase. However, a prescription is required in the US, though I've heard it said there are ways around this.
Click to expand...

Yes, I have wanted to do that but every time I have managed to get to my Dr I never get the chance. I barely speak and am there to get my sleeping meds renewed.
 
I want to see a proper study done on it. Several in the ME/CFS world have advocated it (Dr Klimas, Dr Younger) but i checked and found no actual research on it beyond anecdotal statements which really irks me.
And if it does work the proposed mechanism is not convincing
 
Last edited:
Webdog said:
What @Alvin said.

However, there was a 2010 pilot study in Multiple Sclerosis, which found "LDN was well tolerated, and serious adverse events did not occur" and "LDN significantly improved mental health quality of life indices."

Pilot trial of low‐dose naltrexone and quality of life in multiple sclerosis, 2010, Cree et al
https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.22006
Click to expand...
I had only looked for ME and CFS when i was trying to find out more about it so i had not seen this study.

Its very interesting. In our case i would guess the theory is that immune boosting is causing the cognitive improvements since low NK activity has been stated by several sources as the cause of ME related cognitive issues. Does this mean the cause is similar in MS?
Since Naltrexone is supposed to boost immune activity how does it improve MS which should involve worsening autoimmunity if the immune system were enhanced. And with us, we have immune deficiency and immune activation, it should make ME worse in some ways and improve in others if immune boosting were its mechanism of action. All that said how it works and what exact immune abnormalities are involved with us and MS is not well understood...
 
Last edited:
From my understanding LDN is more complicated than an immune boosting medication and I think the idea that anything that activates the immune system is necessarily bad in autoimmune diseases is outdated. Immune suppressants have been used for decades in diseases like MS and they have only seen limited success. LDN also inhibits activation of TLR4 receptors in microglia, which makes it an anti-inflammatory with regards to this effect.

AFAIK there are no studies on LDN with regards to ME/CFS, but LDN has had an impact within MS community especially in Norway and there was also a study here showing some results on fibromyalgia. The author of that study (Younger) is also involved with Ron Davis' and OMF research. Younger spoke at length about neuroinflammation in ME/CFS, but since he already has studied LDN, it seems he doesn't think LDN will be the drug to solve neuroinflammation in ME/CFS.
 
Snowdrop said:
I have access to LDN through my GP who was willing (after some cajoling) to prescribe it.
Sadly, it needs to be compounded and it is not covered by insurance. I can't afford to take it as a result.

I would cost me CDN $96 a month/30 capsules.
Click to expand...

Oh, that is expensive. I paid $45 CDN for the same amount several years ago. The price differed quite a bit between the 2 compounding pharmacies that I contacted.
 
JES said:
From my understanding LDN is more complicated than an immune boosting medication and I think the idea that anything that activates the immune system is necessarily bad in autoimmune diseases is outdated. Immune suppressants have been used for decades in diseases like MS and they have only seen limited success. LDN also inhibits activation of TLR4 receptors in microglia, which makes it an anti-inflammatory with regards to this effect.
Click to expand...
I don't doubt it could have complicated effects, but from my point of view thats all the more reason to study it to tease them out.
Also many seem to have tried it and found it didn't help their ME so thats important to note.

JES said:
AFAIK there are no studies on LDN with regards to ME/CFS,
Click to expand...
I could not find any, Younger apparently tried to do one but could not find patients to recruit according to the FDA listing.

JES said:
but LDN has had an impact within MS community especially in Norway and there was also a study here showing some results on fibromyalgia. The author of that study (Younger) is also involved with Ron Davis' and OMF research. Younger spoke at length about neuroinflammation in ME/CFS, but since he already has studied LDN, it seems he doesn't think LDN will be the drug to solve neuroinflammation in ME/CFS.
Click to expand...
We probably have some similarities to MS but thats not enough, we have a different disease even if it is related. If it works, how it works and why it works are very important questions. And if its supposed to help then why would it not help one of the cardinal symptoms. Maybe it only does one thing and leaves the others untouched, or maybe the anecdotal evidence is terrible in aggregate or who knows. The need for more study is clearly indicated
 
Webdog said:
What @Alvin said.

However, there was a 2010 pilot study in Multiple Sclerosis, which found "LDN was well tolerated, and serious adverse events did not occur" and "LDN significantly improved mental health quality of life indices."

Pilot trial of low‐dose naltrexone and quality of life in multiple sclerosis, 2010, Cree et al
https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.22006
Click to expand...
This was an 8 week study so imo in a relapsing remitting illness these results are irrelevant.
 
You must log in or register to reply here.
Back
Top Bottom