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LDN weird side effects

Messages
56
I started LDN two nights ago (1.5 mg) and thought I'd be having insomnia based on what other people have reported, but I've been sleeping 13+ hours both nights, waking up with water retention/puffy face, exhaustion, and constipation (constipation is rare for me). If I didn't know the difference I'd assume I took Flexeril which gave me the exact same side effects (not good). Does anyone know the mechanism of this (insomnia vs excessive sleeping) and does it go away? I'm starting at a really low dose and working my way up over the next few months.
 
Messages
56
That may be too high a dose for you--at least sleeping excessively means that the dose is too high for me.
Hey, thanks for your reply. I take them in capsules and don't compound them myself so I can't really split the dose. Do you think the side effects will abate in a few days? Also before I started the LDN my immune system has been really compromised and I'm having trouble fighting off a couple viral infections... does the LDN boost the immune system to fight off the viruses?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I take them in capsules and don't compound them myself so I can't really split the dose.
Before I started compounding it myself with 50 mg tablets, I used to open the capsules, mix however much I need in distilled water and compound it that way as the capsules were rarely the dose I needed.
Do you think the side effects will abate in a few days? Also before I started the LDN my immune system has been really compromised and I'm having trouble fighting off a couple viral infections... does the LDN boost the immune system to fight off the viruses?
Usually side effects will abate but, for me, the sleepiness just meant that I needed to lower my doses. You'll have to just watch and see. LDN modulates the immune system so yes, you may "get sick" at first as it fights bugs. One friend started at too high a dose and then ran a fever of 103 as his immune system fought something.
 

lafarfelue

Senior Member
Messages
433
Location
Australia
I take them in capsules and don't compound them myself so I can't really split the dose.
If you search the forum, there are a few threads discussing dosing and use of water to dissolve LDN to get smaller dosage. There are also discussions around what other people have experienced at various dosages, whether they do better by pulsing their dosages etc. Everyone is different with this dang illness. It'll just be a bit of time adjusting and figuring your ideal dosage out. :thumbsup:
 
Messages
53
This author does not like LDN, and says it works in short term (1 year), but causes autoimmunity problems later on. https://livingwellnessblog.wordpress.com/2014/11/12/low-dose-naltrexone-inflammation/

I am aware of numerous people who have used it vey succesfully to lower viral loads in certain infections, but I tend to think it is a tough drug to take optimally. I feel like it can have great benefits but also some pretty concerning risks. I hope you can make it work for you. My best reccomendation is to consider an every other night or e3d schedule, I feel like ED doses lead to build up of the metabolites.
 
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Messages
53
Before I started compounding it myself with 50 mg tablets, I used to open the capsules, mix however much I need in distilled water and compound it that way as the capsules were rarely the dose I needed.
Usually side effects will abate but, for me, the sleepiness just meant that I needed to lower my doses. You'll have to just watch and see. LDN modulates the immune system so yes, you may "get sick" at first as it fights bugs. One friend started at too high a dose and then ran a fever of 103 as his immune system fought something.


I could not figure out if LDN was allowing dysbiosis issues to get worse or better, as I experienced more gut inflammation in trouble spots upon waking, but if I gave it a half day, I would feel pretty amazing. Rather than continue to think it was a healing process, I was influenced by that article I posted to think maybe it was just covering up the body's response to bacterial/fungal issues and allowing them to proliferate, so I felt good, but on inside was getting worse. There are also forum reports about it making yeast overgrowth worse. Maybe it was helping restart my immune process, or maybe it was doing something like stimulating excess th17, I do not know. I do know on certain days after taking it, by midday I would feel like a normal person with lots of energy and positivity. This was on doses as high as 3mg a night. Now I use 0.5mg 1-2x a week as a more conservative approach.

I think the problem is, I have not seen data to support if it specifically tamps down or upregulates certain arms immunity. In my mind, immuno modulator is better than a straight suppressant or stimulant like some drugs, so that is why I am cautious and prefer to balance than stimulate or suppress. It is a very potent drug though, and I have heard of many people with various health issues helped by it.
 
Messages
56
Thanks everyone. I think the excessive sleeping was actually me making up for a sleep deficit.
However, I'm still confused about whether LDN is an immunosuppressant or stimulant? It doesn't make sense that it's used for both autoimmune disease and HIV (overactive vs underactive immune system)? Before starting LDN a dormant virus flared up and isn't calming down much since being on LDN, my allergies are much worse, and I keep breaking out in eczema, dermatitis, and acne. So it seems contradictory (1. can't fight off a virus, 2. going into overdrive with the eczema?). I don't know enough about the immune system... I'm taking vitamin C and zinc, mushrooms to fight off the virus but it doesn't seem to be working.
 

Starsister

Senior Member
Messages
834
Location
US
I’m so glad to find this thread...I’m doing something wrong trying to use the keyword feature and was getting nothing..but I finally fiund a doc here who soecializes in women’s pain do she does a lot with fibro and suggested the LDN...said all her patients were doing well on it. But it arrived today and it is the maximum 4.5 rise...I’d forgotten to tell her I always need to start off with a quarter or half of drag others take. After reading reviews on,ine..it sounds WAY to high for us CFS folks. She makes a point to say she is nit a CFS expert, although did think alit if my pain was fibro. Ofcourse couldn’t reach anyone inoffice, so opened capsule and out half in water. Materials I noticed I was feeling that wired, racing heart, feeling, like too much caffeine..although I hadn’t had any and wondered if it was causing it.

Is it also important whether you take it at night or day? I heard it could cause insomnia, which I can’t afford to make worse, so tried it in day, but then read there is a biochemical reason it is better at night? Any thoughts? Am I right to be concerned that she’s starting me out on the highest dose?
 

lafarfelue

Senior Member
Messages
433
Location
Australia
@Starsister re searching the forums here; that't nothing to do with you, I'm sure you're trying to search just fine! The search doesn't recognise short words (like LDN!) so it's often easiest to run searches through Google like this. (clean link to a Google search :) )
 

Starsister

Senior Member
Messages
834
Location
US
@Starsister re searching the forums here; that't nothing to do with you, I'm sure you're trying to search just fine! The search doesn't recognise short words (like LDN!) so it's often easiest to run searches through Google like this. (clean link to a Google search :) )
Oh wow, thank you! It’s amazing how much comes up from PR just on google! This will be my reading for this eve. Thanks for letting me know it’s not just my ineptness with navigating PR, or my messed up brain.:thumbsup: