I read an interesting personal experience about LDN with ME/CFS on a forum:
As this drug modulates the immune system, after a few days at a higher dose the immune system usually finds some neglected jobs to do (like working on low-grade infections) and I feel a bit sick till it clears up the mess. So I am now waiting for the “what next?”
But, I like this drug and so far so good.
This US focused discussion thread has a lot of activity many reporting good outcomes with LDN, some finding it not suitable for them.
Sushi goes on to say:
Each time I’ve raised the dose–and I am creeping up much more slowly than most–I have noticed these effects for a few days, then my immune system (which has been severely hypoactive) attacks something–usually for me low grade sinus and ear infections that have been there for years–and I feel like crap until that stage of the clean-up job is done.
My hope (and some others have reported) that eventually when I get up to the targeted dose, the immune system will clean up all the back-log and the “feel-normal” effects will become more stable.
She’s now at 4.5mg having increased the dose very very slowly over a long period and no longer feeling ill effects.
I had wondered if it was possible that my recent lingering headache, tummy trouble & feeling like I have a virus (without cold symptoms) could be due to LDN boosting my immune response and maybe finding nasty things in my body to fight. This personal experience of the user on this forum would seem to suggest it’s possible. Another user reports feeling very similar to me – improved sleep, less pain and more energy but sort of feeling fluey and run down then not knowing if she overdid it with the new energy or if it’s something to do with the way LDN works. Yet another user is reporting a mild headache and tummy ache.
I also recall that when I was on 2ml dose previously I felt great for a week to 10 days then felt sort of run down and listless for a couple of weeks (when I then upped the dose and triggered bad side effects). So I might of sort of been here before. What’s going to be interesting is what happens in the next couple of weeks – if the yuck feelings go, stay the same or worsen.
I’ve held off voicing the idea that maybe LDN is sorting out my immune system and then fighting off bits of infection as it goes – because it falls into that idea with many therapies for ME/CFS that you have to feel worse before you feel better. Then you get the counter argument that how do you know the feeling worse isn’t actually a poisioning of the system rather than dejunking it?
There’s a lot of knowledgeable people over on that forum thread. They are talking about scientific stuff I can’t compute like a connection for one user with rapid weight loss using LDN:
One of the things LDN does is lower TH17. Now TH17 is important for gut immunity.
It’s my hypothesis that in those of us with major yeast/dysbiosis issues the LDN causes malabsorption. My advice would be to stop the LDN for a few weeks (you have nothing to lose) until your weight has come back up to normal.
I’m telling you this because a) I might have a major yeast infection (but not the weight loss) and b) this isn’t like when I tried the garlic tablets to cure ME/CFS there’s some serious scientific stuff and research going on that I don’t fully understand but which I sort of trust.
Ironically Low Dose Naltrexone’s shorter term blockade of the endorphin receptors results in increased endorphin levels in the brain. This occurs because LDN’s blockage of these receptors tricks the brain into thinking endorphin levels are low causing it to compensate by increasing endorphin levels. Endorphins, which are known as ‘natural pain relievers’, are produced by the HPA axis during exercise, excitement, pain, sexual activity, meditation, acupuncture, massage therapy and by eating spicy foods and chocolate. (The “phin” in endorphin is a take off of morphine). The ‘runners high’ is believed produced by high endorphin levels in the brain after extended exercise.
Endorphins effect the immune system by enhancing natural killer cell response and reducing B-cell (antibody) activity and LDN’s effectiveness is being tested in several autoimmune diseases.
LDN appears to effect the functioning of the regulatory immune cells in the central nervous system called microglial cells. Upon activation by infection or cell damage micoglial cells produce pro-inflammatory cytokines, reactive oxygen species (free radicals) and nitric oxide. Microglial cells may be a key component of the ‘sickness response’ that produces fatigue, fluey feelings, pain, etc. when we come down with an infection. Some researchers believe that microglial cells are chronically turned on in ME/CFS and fibromyalgia. LDN appears to block a receptor on the microglial cells thus inhibiting their activation.
Ummm ok then Sounds good to me though!
I don’t have answers I’m just sharing what I’m uncovering and piecing together as I go on this journey. And this is just another possible reason I’m feeling crappy at the moment. I may know more with time.