• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Reasons for not trying LDN

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
As for people who have a bad reaction to LDN, there's a discussion on this other thread about it, perhaps a next step is to take one of these things that has an opposing effect on the immune system, abandoning the LDN.
I can't vouch for how legitimate this is but I've read that people with fungal infections like Candida should clear these issues up as it can supposedly interfere with the effectiveness of LDN.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
JPV perhaps you will be okay on just 1mg. U have heard that some people only need this much. I wouldn't try and go higher if it is causing you problems and you are getting a reasonable response (a few good days).
I've only been on it for a month so I'll try increasing the dose a little at a time. I've read various accounts where it's taken people upwards of a year to get to the full recommended 4.5 dosage. Insomnia was the worst problem for me and that seems to have gone away after about 3 weeks.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
I've only been on it for a month so I'll try increasing the dose a little at a time. I've read various accounts where it's taken people upwards of a year to get to the full recommended 4.5 dosage. Insomnia was the worst problem for me and that seems to have gone away after about 3 weeks.

Perhaps I was lucky, but after the initial couple of weeks where I did have side effects, I was able to increase the dose quite quickly. When 4.5mg stopped being as effective, I was able to double the dose immediately without problems....
 

mermaid

Senior Member
Messages
714
Location
UK
The side effects I got from using LDN seemed unusually severe and I have not heard of others getting what I got.........

The first time I tried it I found I could not tolerate it internally at all. I have a condition that mainstream medicine calls Non Ulcer Dyspepsia, and even a tiny drop of LDN hurt my stomach like hell. It was as if I had a drop of acid. I am now using some Omeprazole which modifies this problem somewhat, (as I get it with foods also) but I don't really want to be on Omeprazole long term due to its possible side effects.

I then went onto transdermal LDN, and was on that for a year. It didn't do much for my ME symptoms but did seem to work quite well as a mild antidepressant. I have since been in touch with someone who knows quite a bit about LDN and she told me that some research had been done on transdermal LDN and it was suggested that it is not acting on the endorphin blockage in the way that taking it internally would do.

I then had a gap of a year and tried again. This time I tried the sublingual version which was being produced by Dicksons Chemist in Scotland, where I had got my previous supplies from. Even sublingually, I guess a tiny drop can go down the stomach and I had the horrible burning pain I got from the oral kind.

Even worse, the neurological symptoms I got from LDN on the 2nd occasion (I didn't get this the first time) were horrendous. I was on 1ml sublingually, though I did drop it to 0.5 for a while and the symptoms were not quite so severe. I would repeatedly jerk awake each time I was dropping off to sleep, over and over. So it was not insomnia as people have described it, but my brain somehow produced this awful side effect. I had a horrible migraine not surprisingly from this.

I have never heard of anyone else getting this problem, but funnily enough am just reading a novel where a character gets exactly this side effect from morphine.

In retrospect I could have tried it in the daytime to get over this, but could not sort out the severe stomach pain issue.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@JPV a current comment from lowdosenaltrexone forum:
LDN should ideally be taken only once a day. If side effects are a problem, you can try reducing your dose to .5 mg at bedtime and increase it by .5 mg every two weeks, or take it in the morning for a couple of weeks to let you body become acclimated to the drug. For more information about LDN doing and side effects, including a list of sleep aids, visit http://tinyurl.com/ldn-side-effects-and-dosing
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
@ahmo, It's all very confusing. I think Jarred Younger has mentioned that taking it twice a day might work better for some.

I'm noticing a pattern where I might have 2-3 good days in a row and then a bad day or two. My sweat keeps smelling of ammonia so I imagine there's some sort of detox going on and it probably starts backing up a bit. That's what it feels like at least.

I'm also having low grade sore throat, fever and chills on occasion. From what I've been reading, I take this as a good sign.

Overall, I'm pretty convinced this is a good treatment for my case but I can see that it's going to take some time to see consistent positive effects.
 
Last edited:

Thinktank

Senior Member
Messages
1,640
Location
Europe
@JPV, i smell horrendous on just 0.5mg LDN haha. I can't really place the smell, it's indeed a bit ammonia-like but not quite. If you find anything that helps with it, please let me know because my girlfriend is not very keen on my LDN-de-parfum. :vomit:
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
@JPV, i smell horrendous on just 0.5mg LDN haha. I can't really place the smell, it's indeed a bit ammonia-like but not quite. If you find anything that helps with it, please let me know because my girlfriend is not very keen on my LDN-de-parfum. :vomit:
Yeah, mine's the same way. I guess frequent showers is the obvious solution. And you're right, it's not exactly an ammonia smell. Maybe more like a dirty litter box... I don't really know how to describe it.

I'm wondering if Yucca, Charcoal, Bentonite or Milk Thistle would help any.
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
I'm wondering if Yucca, Charcoal, Bentonite or Milk Thistle would help any.

@JPV I don't want to sidetrack this thread but what exactly is yucca and what is it used for? Is it a mold binder like charcoal and bentonite?
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
@JPV I don't want to sidetrack this thread but what exactly is yucca and what is it used for? Is it a mold binder like charcoal and bentonite?
It's a root that you can get in capsule form. It purportedly binds to and helps remove ammonia from the body.

I started using Bentonite today to see if that helps with whatever toxins seem to be getting stirred up by LDN.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
I'm wondering if LDN can somehow overactivate the sympathetic nervous system. I get a few side effects from LDN that i also get from stimulants, especially caffeine. Smelly sweat is one of the profound side effects that i get from stimulants.