- Joined
- Sep 5, 2020
- Messages
- 3,161
- Reason
- DX FIBRO
- Diagnosis
- 02/2020
- Country
- DE
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.
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.
. Cleaned the digital ones and took batteries out and back in: lo and behold +2kg 
. I think I'll stick with good ol' analog. 
. But is the weight loss from naltrexone or just not digesting food well?