My Trial of Low Dose Naltrexone LD N for my fibro, "ME/CFS", MCAS and post vac Long Covid

JayCS

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Instead of bits'n'bobs in passing, a separate diary-like thread, like @JamieMarc's guaifenesin one. (Meandering off here is no problem for me.)

LD N has surprised me by being the one thing that's made the most sustainable improvement to my conditions. After and besides 100s of others that I still need. Trebled energy (10 to 30%), good enough sleep, but still with enormous limitations of movement and peopling.

Starting:
It was one of the last things on my list cos of the equal amount of bad to good experiences I'd read and with MCAS not tolerating much.
I started cos it's recently been recommended and trialled more for all the conditions I seem to have:
the post vac form of Long Covid, MCAS ME/CFS and fibro.
My GP declined to prescribe it, or educate himself about it, but my cardio is forthcoming, co-operative & trusting with anything I want to try.
I had to wait a year till the powder was available. Any pharmacy in Germany can compound it. I asked for the capsule and filler type I've been tolerating from the few they could offer. A specialized compounding pharmacy might have offered other fillers.
Unsure, I wanted to start with 0.5mg. But the label was wrong, so to be on the safe side I opened them and spread them over 7 empty capsules, making the dose 0.07mg. It was a good choice I'd recommend to anyone trying it, as I feel it minimized side effects - few and short.
After 4 months of increasing from 0.07mg to 3mg its positive effects haven't increased that much, so I'll be increasing slowly to 4.5 and then likely down again.

Effects on me:
It's fairly constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5'), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep. My histamine and/or tannin reaction from walnuts has disappeared, but I'm not sure if it's from that. It hasn't improved my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense (people, music).
Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg. Before that my last "hangover" from it for a few hours on Oct 20th.
Forgetting it on one day in the 3rd month immediately caused a big energy dip, so there doesn't appear to be a build-up, it works only whilst it is in my body.
Any trigger, like doctor exams, short car trips or socializing for >1h can decrease all improvements again, except usually the energy of 30% and the sleep, but the shorter recovery time makes up for that. This often leads to the weird sensation that I have the energy (often also nimbleness) but can't use it without becoming ill, nauseous, heavy etc.

Contributing to my weight loss?
I'm still steadily slowly losing weight - before taking it, then managed to gain weight again, and now losing again, lower than "ever". Researching that it actually can be used to lose weight. However in a 10-fold dose, 30mg, and together with other substances. My cardio like my onco believe this is due to only being able to eat 50 foods, despite eating very healthy stuff - organic, wholemeal, unprocessed and lots of nuts.
 
5 things going wrong at the same time made me decrease back down from 3mg to 1.5mg, and change 2-3 other things,
taking me back to same good main effects, and no stomach burning/nausea, waking, less pain, which might have been its side effects.
Aside from praps the LD N, the nausea might have been from tastier apples, the worse sleep from too much screen time in the evening, the pain might have been from sleeping less, the focal seizure from reduced GABA or just normal (1x/m).

So next I'm increasing tastier apples again. Only if that doesn't cause nausea and stomach burning was it the LD N.

Weight loss was the 5th issue. My digital scales say I've lost at least another 1kg in a couple of days, whilst my analog ones say it's not that bad (+3kg), confusing 🧐. Cleaned the digital ones and took batteries out and back in: lo and behold +2kg :rolleyes:. I think I'll stick with good ol' analog. ⚖️. But is the weight loss from naltrexone or just not digesting food well?
 
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