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experiences with LDN?

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Posted 2/25/2022 10:04 PM (GMT 0)
Been using LDN for 14 days. Dr gave me liquid so i can dole it out as i choose. .25 for the first week, .375 for second week.

It seems to have caused increased neuropathic pain. Vibrating and numbness is spreading. Feet just feel so sensitive and vulnerable. Whole nervous system feels inflamed, I can feel like a tension and tightness in my chest and I cant relax. Stress from work may be contributing.

Curious if others have had similar experiences? Does it eventually calm down? I cant imagine anyone else out there is this sensitive. It appears my immune system, but also my nervous system, just flies off at the slightest provocation. This reminds me of what others experience with MCAS and POTS...an ANS response, yet it seems to affect me differently. I get tight in the chest and extremely agitated, circulation in my feet goes out and increased neuropahty.

I know its the immune system, but there's definitely some interplay w/ the nervous system where it senses something is there that shouldnt be and freaks out.

Anyway, im digressing, stream of consciousness....just very aggravated. If I fight through it does it eventually calm down? My gut says no. How do you fix a system that is this fragile.
Posted 2/26/2022 12:30 AM (GMT 0)
I tired the low dose naltrexone - for pain when I was still undiagnosed.
It didn’t help - in fact it caused me to have pain at night and it caused poor sleep.
Posted 2/26/2022 11:33 AM (GMT 0)
Hi dcd

i started on 0.5mg - but only because in my reading most sources said to start at 1.5mg and go from there - and i thought 0.5 was going to be super low

however, i had some pretty strong and strange reactions to it and knowing what i know now i would have started much lower and then stepped more gradually - using liquid as you are doing

initially i went in 0.5mg steps - but each time i got weird symptoms - odd fleeting neurological pains that would come for a few seconds in different parts of my body then move to another part of my body in a kind of ever moving musical body pains scenario - some days it was a bit scary as my whole body was a tangle of different pains all moving around.

i make a 1mg per ml solution and dose it with a 1ml syringe that has graduations down to 0.01ml so i can dose pretty close to 0.01mg increments if needed.

this is what i have been doing since i figured out it was the steps that were driving teh reactions - so for the last 2 years i just increment 0.01mg each 2-3 days and i don't get adverse reactions like that.

if i did it again i would start at 0.1 or 0.2mg and just ramp gradually from there
you are more sensitive than me - so i think i would literally start at 0.01 and step 0.01 more per 1-2days until you feel any response at all - and then reduce to 0.01 each 3 days

initially i thought the idea was to get to 4.5mg as quickly as possible
now i understand i am getting therapeutic effects at even much lower doses - so forgot about target and just focussed on what helped
initially pain and sleep disruption went up for me - and then i noticed fatigue was lower and energy better and i was getting more done - subtle at first -especially as more pain kind of counterbalanced the better energy in my subjective feelings of how well i was doing - but the objective measurements of getting more done and walking faster could not be denied and it has defo helped

i think over the long term it is helping my immune system balance better - to reduce auto-immune reactions and target infections - so i am sticking at it long term

its been over 2 years now slowly ramping up and am at just under 4mg / day

snapshot of my tracker of LDN use vs tasks and overall wellbeing
Posted 2/26/2022 3:15 PM (GMT 0)
Can you take LDN if you have candida? I have read conflicting information on here.
Posted 2/26/2022 3:29 PM (GMT 0)

sdarrah said...
Can you take LDN if you have candida? I have read conflicting information on here.

i have not come across anything that says its a problem
Posted 2/26/2022 3:33 PM (GMT 0)

Garzie said...

sdarrah said...
Can you take LDN if you have candida? I have read conflicting information on here.

i have not come across anything that says its a problem


/////////////////////////////////////

Neither have I.
Posted 2/26/2022 3:42 PM (GMT 0)
The following is a quote from Pacifica Compounding Pharmacy:
Some experts say that candida can block LDN from working. Pay attention to your home space and get rid of clutter and anything that may be affecting the air you breathe. Mold, dust, and chemicals can be found everywhere and while sometimes subtle, these toxins can cumulatively suppress your immune
Posted 2/26/2022 4:11 PM (GMT 0)
that's a bit general Sdarrah

a bit like saying "anything that makes a person ill can stop them getting well"

i would have a look at what the more authorities sources on LDN have to say about it
- eg LDN Research trust
https://ldnresearchtrust.org/search/exclude?keys=candida

LDN is a long term treatment in any case - so if you plan on treating candida anyways i wouldn't let it stop me from trying LDN.
Posted 2/26/2022 4:15 PM (GMT 0)
I don’t have the exact post, but I first heard it from here. Just asking the question to try to get correct information. I guess I will ask the actual compounding pharmacy where I got it.
Posted 2/27/2022 2:46 PM (GMT 0)

Garzie said...
Hi dcd

i started on 0.5mg - but only because in my reading most sources said to start at 1.5mg and go from there - and i thought 0.5 was going to be super low

however, i had some pretty strong and strange reactions to it and knowing what i know now i would have started much lower and then stepped more gradually - using liquid as you are doing

initially i went in 0.5mg steps - but each time i got weird symptoms - odd fleeting neurological pains that would come for a few seconds in different parts of my body then move to another part of my body in a kind of ever moving musical body pains scenario - some days it was a bit scary as my whole body was a tangle of different pains all moving around.

i make a 1mg per ml solution and dose it with a 1ml syringe that has graduations down to 0.01ml so i can dose pretty close to 0.01mg increments if needed.

this is what i have been doing since i figured out it was the steps that were driving teh reactions - so for the last 2 years i just increment 0.01mg each 2-3 days and i don't get adverse reactions like that.

if i did it again i would start at 0.1 or 0.2mg and just ramp gradually from there
you are more sensitive than me - so i think i would literally start at 0.01 and step 0.01 more per 1-2days until you feel any response at all - and then reduce to 0.01 each 3 days

initially i thought the idea was to get to 4.5mg as quickly as possible
now i understand i am getting therapeutic effects at even much lower doses - so forgot about target and just focussed on what helped
initially pain and sleep disruption went up for me - and then i noticed fatigue was lower and energy better and i was getting more done - subtle at first -especially as more pain kind of counterbalanced the better energy in my subjective feelings of how well i was doing - but the objective measurements of getting more done and walking faster could not be denied and it has defo helped

i think over the long term it is helping my immune system balance better - to reduce auto-immune reactions and target infections - so i am sticking at it long term

its been over 2 years now slowly ramping up and am at just under 4mg / day

snapshot of my tracker of LDN use vs tasks and overall wellbeing

Thanks garzie. I'm unsure I can handle it, however. I stopped on thursday and it seems to be calming down now, finally. My toes had turned purple and red and increased numbness and loss of circulation, it was awful. Thankfully this is now calming down.

I dont think it agrees with my body. Nothing does, its so frustrating. Another let-down.
Posted 2/27/2022 4:45 PM (GMT 0)

dcd2103 said...

I dont think it agrees with my body. Nothing does, its so frustrating. Another let-down.

I would focus on non-herxing things that could calm down your system instead of treament and supplements. After a while with that, you are hopefully not as sensitive.

This is what has helped my system to calm down.

Low risk of increase of symptoms
Massage gun
Quercetin
Earthing (barefoot outside)

Zero increase of symptoms
DNRS
Cold showers
Muscle relaxation exercises
Time in nature
Yoga
Meditation
Vagus nerve exercises
Good sleep routine
Reducing stimuly (less browsing the internet)

Post Edited (Deep_sleep) : 2/27/2022 9:59:55 AM (GMT-7)

Posted 2/27/2022 5:09 PM (GMT 0)
that's what i was trying to explain dcd - given your situation - that response is pretty much to be expected

as in - it does not agree with most people who are sick - but its not a normal medication - is doing something very unusual with the immune system - and has to be treated very differently.

if i had gone in and started at even 1mg i would have also been ill and simply stopped.

the starting dose dose and ramp up timing is critical - the more sensitive you are the slower you would have to go - and you are about as sensitive as it gets.

that's why i wrote - in your shoes i would literally start at 0.01mg and work up from there
should have zero impact at first - and then at some point you will feel something and gauge it from there.

the LDN research trust says that those who have strong reactions at first are the ones who are most likely to have a good outcome with it in the long run - so it seems this is just the nature of the beast

quite understand if you have had enough of trying it though
Posted 2/27/2022 11:52 PM (GMT 0)
That’s interesting garzie. I will try it super low, maybe .01 like you said. I have the liquid so I can do that. Thank you for the advice

I just need to let this flare pass first I think before I can get back on. This was really really bad. Between the plaquenil, licorice and now LDN, back to back to back flares my nervous system is in a really bad place right now
Posted 2/28/2022 12:23 AM (GMT 0)
Hang in there dcd!
Posted 2/28/2022 10:38 AM (GMT 0)
yep - hang in there dcd

defo give it a break before trying again

we are rooting for you
Posted 2/28/2022 3:45 PM (GMT 0)
“ Pay attention to your home space and get rid of clutter and anything that may be affecting the air you breathe. Mold, dust, and chemicals can be found everywhere and while sometimes subtle, these toxins can cumulatively suppress your immune“

Dust is everywhere…. I don’t think you can eliminate it.
Same with clutter.
We’re all in trouble it that’s the case.
Posted 3/1/2022 9:43 AM (GMT 0)
The LDN leaflet I was given with the prescription said lyme patients can herx on it and to drop the dose back until it settles and increase slowly again. I herxed on it but very slowly managed to get up to 2ml, if I go higher my immune system goes nuts and stays nuts. You have to find what they call ‘the sweet spot’, there’s no need to get up to 4.5 if a lower dose works for you.
Posted 3/1/2022 8:27 PM (GMT 0)
“ The most common dosages are 1.5mg, 3mg, and 4.5mg.“


https://www.lowdosenaltrexone.org/hx/further_q_and_a.htm
Posted 3/1/2022 8:35 PM (GMT 0)

Girlie said...
“ Pay attention to your home space and get rid of clutter and anything that may be affecting the air you breathe. Mold, dust, and chemicals can be found everywhere and while sometimes subtle, these toxins can cumulatively suppress your immune“

Dust is everywhere…. I don’t think you can eliminate it.
Same with clutter.
We’re all in trouble it that’s the case.

It's literally impossible. My wife and I live in a small home with two dogs. I can deep clean everything one day, and to be honest most days I don't have the ability to do that, and by the evening of the following day there will be dust everywhere and dog hair everywhere. I do the best I can but don't stress about it.
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