Low Dose Naltrexone is the treatment I hear the most positive stuff about among PWMEs. Need some questions answered by those who have used it

[Guwop2]

Ive been on LDN for about 5 weeks now and I have some questions which may determine whether I continue (I have actually paused the treatment).

So I started on a minescule dose - one drop from the pipet supplied - and increased weekly until I was on 3 drops. I did this as I was concerned that I may 'crash' as other have done if taken to much. For this period I had the weird dreams people talk about and the disturbed sleep, which all faded, but which demonstrates that my body was responding to the treatment in a normal way.

However, last week I came down with a virus of some sort - I do travel on the London Underground a little bit, so could have picked it from there. It's not covid (I tested), but it has lingered for nearly a week now and I feel pretty awful - I have been trying to do things, but today I just gave in to rest completely since I felt attrocious.

Question: Could the LDN be responsible for me feeling this bad after getting a virus? Since the LDN modulates the immune system is there any chance it may have made this virus that ive got worse than it otherwise might have been? Worht noting that these viral symptoms arent my M.E symptoms, if this information is at all helpful.

 

[Garz]

probably just the virus doing what it does - there are a lot of strange viruses circulating - i have had odd effects like increased fatigue, gut issues, sleep issues - following some bouts of virus - for long after the sore throat and respiratory symptoms have resolved.

i would just pause any increases in LDN till you are feeling better - otherwise it can get pretty confusing as to what is doing what

 

[Guwop2]

probably just the virus doing what it does - there are a lot of strange viruses circulating - i have had odd effects like increased fatigue, gut issues, sleep issues - following some bouts of virus - for long after the sore throat and respiratory symptoms have resolved.

i would just pause any increases in LDN till you are feeling better - otherwise it can get pretty confusing as to what is doing what

Thank you for advice. This virus ive got is really nasty and seems quite long lasting, but then ive also heard there are some upleasant virus's doing the rounds currently, perhaps as a response to things opening back up after quarantine and the vaccines, etc.

Ive paused the LDN for now and once I recover will continue, but I guess I was just concerned that because LDN is an immunomodulator that ive been left wide open to the worst excesses of any virus, which is maybe why im feeling so bad..though, i dont fully understand LDN, so my theory is just a theory based on my flimsy understanding of it.

 

[Nord Wolf]

I started LDN at .5mg in late January this year. I get mine from Belmar compounding pharmacy in Denver Colorado. They seem to be one of the least expensive around.
I took .5mg for 4 weeks with no noticeable difference in anything. My doc wanted to start slowly. On week 5 I began the 4.5mg dose, and am still at that dose.
About 3 days after starting the 4.5mg dose I notice sever head pressure when leaning forward. But I was also recovering from a brutal bout with H1N1 Influenza. After about a week the head pressure left. So I'm not sure if it was from amping up the LDN or leftover garbage from influenza. Either way, I have had no other side effects.

What I did notice about the same time the head pressure came on was a noticeable increase in energy and decrease in full body pain, beyond the head pressure. I had more energy and less pain than I've had in months. Of course I didn't pace correctly and crashed into PEM about a week after the energy increased... and I'm still in PEM. However, even though I'm slogging through PEM, my overall full body pain normally accompanying it is much lower. The only thing I can attribute this to is the LDN since I've changed nothing else.

I'm interested to see how much energy returns once I pull out of this spell of PEM! If the energy increase returns I plan to do a much better job in pacing to see how long I can get it to last. I have a Garmin watch coming next week to help me with that... since I still have not figured out the best pacing after years of trying.

Anyway, so far the 4.5mg of LDN has shown promise. I just need to work with it so it can do its job without me undermining the new energy.

 

[Guwop2]

Thanks for the update Nord Wolf, it sounds like it's working for you which is great!
I will return to it after this illness has gone, but for now Im not confident enough to continue.

 

[Garz]

for what its worth - i have not experienced or hear or read about anyone experiencing worsened viral symptoms from LDN

overwhelmingly, the negative effects that do get reported are far more often the effects of taking too much too soon and are typically things like pain syndromes, sleep problems and the like.


ref the term Immunomodulator
the human immune system is a very complex thing - its a very long way from a single thing with a single scale - eg like the volume knob on your hi-fi - or the temperature control on your oven -
instead it is a complex network of many different types of cells, cell receptors and maybe 30 or more cell signalling chemicals that can each be raised or lowered more or less independently- and typically operate in cascades or loops, further increasing the complexity.

the term Immunomodulator - is normally used to indicate things that help increase functions of the immune system that are too low - and lower things that are too high - ie tend to move the system towards homeostasis - and normalise response.

this is as opposed to immune stimulators - or immune suppressors - which as their names suggest - are expected to move the system up or down regardless of its starting status.

 

[Nord Wolf]

Thanks for the update Nord Wolf, it sounds like it's working for you which is great!

One thing I have noticed is that it seems to help when I am not in PEM; increased energy and decreased pain. However, if I am slogging through PEM, like now, the LDN doesn't seem to noticeable do much. Obviously then the trick is to avoid PEM so the LDN can perhaps do more. My hope is the Garmin watch coming next week will help me Pace! Something I've been trying for years without great success.

Anyway - LDN helps me when not in PEM, but does nothing noticeable when struggling in PEM.

 

[cheeseater]

Antabuse (disulfiram) is proving to be a possible miracle cure for glaucoma. It is being studied all over the world.
Here's one: https://pubmed.ncbi.nlm.nih.gov/25330366/

 

[Guwop2]

I react pretty badly to this one. But we're all different. I'd give it a shot.

Hey GLaT, i think I just crashed from LDN, what was your bad experience and how long did it take you to recover from it? I my case I think it's effected the success of using probiotics (another immunomodulator) - i feel like i did when I first became ill. Only been a week since i stopped taking it, but started feeling the virally/ easy PEM symtoms within a few weeks of using it at a very very low dose.

 

[Garz]

Anyway - LDN helps me when not in PEM, but does nothing noticeable when struggling in PEM.

that makes perfect sense to me - as PEM seems to be the result of an acute (short term) overstressed state - and the only thing that really helps is rest and recuperation.

whereas LDN is a long term treatment prospect that only really brings gradual improvements in the homeostasis state over the long term - ie helping reduce the occurrence of PEM in the first place

 

[Wishful]

whereas LDN is a long term treatment prospect that only really brings gradual improvements in the homeostasis state over the long term

For me, LDN started working (blocking neuropathic pain) in a few hours, and the effects would last ~36 hrs. I'd call that a short-term treatment. After a couple of years of that, I no longer got the pain, but was that a long-term effect of LDN or a change for some other reason? LDN had no other noticeable effect on me.

 

[Garz]

For me, LDN started working (blocking neuropathic pain) in a few hours, and the effects would last ~36 hrs. I'd call that a short-term treatment.

i guess there will always be outliers - and it is thought to have anti-inflammatory effects - which could act relatively quickly.

but i am going mainly by how the LDN research trust advise using it - which is a slow and steady ramp up from a v low dose over the course of several months in things like ME/CFS. so that by definition is a long term treatment.
https://ldnresearchtrust.org/

some doctors prescribe it at anywhere from 2 to even 4.5mg from the off - presumably not understanding how it works and treating it like any other medication - but again - this is not how its advised to be used - and i hear of a lot people failing with it for this reason.

i would have been in the hospital if i had taken 4mg from the off