(Just crashed) Could LDN have nullified immunomodulatory effects of probiotics?

[Guwop2]

For the last 7 years ive used probiotics to treat the worst excesses of my M.E symptoms. It didnt seem to matter which strain I was using, but rather it seemed that the higher the bug-count the better. Some formula's were better than others and ended up settling upon a few of these formula's that i stuck with/alternated between when others were out of stock, etc. Whilst using these probiotic formulas for the last 7 years (which I have been told work because of their immunomodulatory qualities - people on here have told me this) I had been able to excercise and concentrate for extended periods; a far cry from the vegetable-like state of pain I was in prior. In spite of becoming unable to excercise and concentrate as I had before without crashing after receiving the first AZ vaccine- the vaccine for me took away much of the freedoms I took for granted prior - I was at least able to somewhat 'carry on' ...that was until the last 2 weeks.

I started a course of LDN a month ago (which i decided to try because of their 'immunomodulatory effects' ('yay! just like the lifeline I found in the probiotics' I thought). Within a month of being on them I started feeling the creeping virally feelings, reminiscent of when i first got M.E. I stopped taking the LDN as it was the only new thing I could identify as having introduced into my biosphere (the usual process of elimination I used when I have a crash and cant put my finger on the exact cause - not that this is practicaly useful, though it can prevent one from going mad over the seeming arbitrariness at which flair-ups occur).

It has only been a week since I ceased using LDN, but the awful pain I would experience of not being on probiotics have settled in (my glands are constantly up, I can't walk with PEM, or concentrate), although I am still taking my probiotics.

The only logical conclusion is that LDN has nullified the effects of the probiotics. Could this be permanent? Should I try new probiotics (perhaps a new formula would work where the last ones are now defunkt?) Perhaps time will level things out again?
I have been taking some chinese herbal medicine and some beta-blockers, which are my last resort when crashing, but which are the only thing that ease the pain and reduce the activation of my immune system/cortisol overproduction / blah blah / etc etc
Will beta-blockers/chinese medicine hinder any recovery because they are only temporary paliatives (plus I cant take them forever anyway)?

..as i write this I am aware I am writing into a void of knowledge, but thanks for reading if you got this far and double thanks if you can offer any insight

G

 

[linusbert]

well i've read to the end, but i cannot sadly help because i know nothing about probiotics. everytime i tried them, i got bad green diarrhea.

It didnt seem to matter which strain I was using, but rather it seemed that the higher the bug-count the better.

but this was making me suspicious. maybe the mechanism why it worked was different than what you believed? idk what is going on but maybe those bacteria a keeping your immune system busy similiar to the phaenomena of some of us who feel much better when they get a flu/cold.

 

[Rufous McKinney]

I do all of what you describe.

I can't seem to come up with WHY would LDN do a thing to bother your intestinal flora. In my mind, that seems unlikely. Briefly blocking an opiod receptor doesn't seem like it would do that.

Maybe its a concidence, easy to say from here.

Should I try new probiotics

could the probiotics have changed? could something else have been introduced? I know my chinese herbalist does not believe in taking them frequently, he views it as a type of Russian Roulette.

I generally take chinese herbs in the hope to feel better so I crash less. Taking them DURING a crash may be contra-indicated.

From my experience, whenever "something out of the ordinary is going on (like PEM, or the flu or another illness) you stop the chinese medicine in. order to : focus on the new problem.

I'm told to STOP my normal chinese herbs until X is fixed or I'm recovered from Y.

 

[Rufous McKinney]

stop the chinese medicine

To clarify- I might get other chinese herbs to focus on the X or Y.

(I do not have herbs for PEM per se)

 

[Judee]

With this disease, anything can make us crash, unfortunately.

No suggestions. Sorry you're going through all that.

 

[Heart Face]

LDN isn‘t a course, it is something you need to take continually for it to work and should be started very low and titrated to individual optimal dose, and a very clean formula (avoid microcrystalline and excipients in liquid LDN) so to avoid any increase in symptoms or side effects. If you went in at 3mg or 4.5mg, likely why you are feeling rough.

 

[Guwop2]

could the probiotics have changed? could something else have been introduced? I know my chinese herbalist does not believe in taking them frequently, he views it as a type of Russian Roulette.

I generally take chinese herbs in the hope to feel better so I crash less. Taking them DURING a crash may be contra-indicated.

From my experience, whenever "something out of the ordinary is going on (like PEM, or the flu or another illness) you stop the chinese medicine in. order to : focus on the new problem.

I'm told to STOP my normal chinese herbs until X is fixed or I'm recovered from Y.

There's nothing on the packet to indicate the probiotic formula has changed, but that may not mean much..

As for the TCM, i only take them when I crash very badly - which I wouldnt count as the day-to-day PEM, which I dont treat with anything except rest and dietary things. In the past Ive used TCM only when crashing badly, for which they seem to address the more serious symptoms effectively, i've never used them on a premanent basis though.

 

[Rufous McKinney]

i've never used them on a premanent basis though.

I've been doing CTM herbs for about 15 years now....

 

[vision blue]

That sucks! Im voting for time allowing both neurotansmiiters and inflammation and immune activation to be free from the nasty ldn receptor blockeer

I was trying to see exactly what ldn does in hoped of reversing it
But its tricky
https://en.m.wikipedia.org/wiki/Low-dose_naltrexone

I would have guessed it kept dopamine from being rekeased which decreased your norioenephrinr which kead to more pain and less functionality BUT you said. Eta blockers help and i think those would decrease nor epi more (?) not sure now- been a while since i worked thru those mechaniams

Guess another possibility is it stimulated immune system or increased inflammation

Di yoyr dreams change at all from LDN? If yes, coukd be useful as marker for ehen its gone plus woukd implicate increase in serotonin or dopamine

Actually thinking our loud, if ldn acts like a reuptake inhibitor, then i definitely see why beta blockers would help!

Still thinking out loud. On the probiotics, linesbert hypothesis is one possibility- youve distracted your immune system

Another is youre reducing your native bacteria that were adversely your neurotransmitters

I dont know how to reverse ldn. I dont thinkntaking an opiate would help

Its not just pain but also alteration in pain-indrpendent functionality and excercise tolerance too, right?

Idea is slipping thru head but cant grasp hold of it- theres something - a simple substance - that affects dopamine turnover- just cant remember it or the details.

How long were you on? Dis you say a month? Might take a few months then for receptors to go back to normal

Sorry am not being more helpful. Any other signs its instead mediated by inflammation not neurotransmitters ? Or immune activation?


Anothet is

 

[Guwop2]

That sucks! Im voting for time allowing both neurotansmiiters and inflammation and immune activation to be free from the nasty ldn receptor blockeer

I was trying to see exactly what ldn does in hoped of reversing it
But its tricky
https://en.m.wikipedia.org/wiki/Low-dose_naltrexone

I would have guessed it kept dopamine from being rekeased which decreased your norioenephrinr which kead to more pain and less functionality BUT you said. Eta blockers help and i think those would decrease nor epi more (?) not sure now- been a while since i worked thru those mechaniams

Guess another possibility is it stimulated immune system or increased inflammation

Di yoyr dreams change at all from LDN? If yes, coukd be useful as marker for ehen its gone plus woukd implicate increase in serotonin or dopamine

Actually thinking our loud, if ldn acts like a reuptake inhibitor, then i definitely see why beta blockers would help!

Still thinking out loud. On the probiotics, linesbert hypothesis is one possibility- youve distracted your immune system

Another is youre reducing your native bacteria that were adversely your neurotransmitters

I dont know how to reverse ldn. I dont thinkntaking an opiate would help

Its not just pain but also alteration in pain-indrpendent functionality and excercise tolerance too, right?

Idea is slipping thru head but cant grasp hold of it- theres something - a simple substance - that affects dopamine turnover- just cant remember it or the details.

How long were you on? Dis you say a month? Might take a few months then for receptors to go back to normal

Sorry am not being more helpful. Any other signs its instead mediated by inflammation not neurotransmitters ? Or immune activation?


Anothet is

Hi visionblue, it does suck! but it's good to hear you run through some possibilities as it gives me a bit of hope that i may just need time for receptors to get back to normal. Yes, I was on it for a month.

I have stopped taking the Beta-blocker (10mg propranolol) and instead am taking some TCM pills, that calms things down a lot - I still cant walk very far whilst on them, but now at least while resting im not in pain (to answer what i think you were asking: PEM/exercise tolerance is hugely lowered currently/worse, and I also get pain independent of exercise). Could just be the panic of having f***ed myself with LDN for who-knows who long, but I have been experiencing higher anxiety, which the TCM really helps with, but which im wondering whether the LDN made worse.

As an experiment I came off of the priobiotics and I was reminded of those specific symptoms that occur when I cease taking them - which are different from the ones im experiencing now as a consequence of LDN. I feel that ive answered my own question above that LDN perhaps hasnt blocked the effectiveness of probiotics, but instead gifted me a new set of inflammatory issues (which i hope are temporary 🙏).

Dream-wise i did experience bizzaro dreams when i first started the LDN, but they fizzled out. Perhaps some residual weirdness is there now, hard to tell because these TCM also give me peculiar dreams.

If you can recall the 'simple substance' that helps 'dopamine turnover' I would be very interested to know about it. I'm willing to try anything to reverse the effects of this.
G

...just to add to this, im wondering whether taking the TCM will slow or prevent the recovery process? Just thinking that if it is subduing the painful response to LDN then my body will not bother to right itself on it's own and just prolong actual recovery.

Also, you say" Any other signs its instead mediated by inflammation not neurotransmitters ?" - now sure how I tell which is which?

 

[vision blue]

Inflammation might cause swelling, redness, not just pain. Thats one possibility. If yku have a baseline SED rate, then one now may show an increase in inflammation. If you tolerate NSAIDs like ibuprofin or aslirin or willowbark that would be an interesring test if ite inflammation to see if they improve things or not.

I dont know enough about TCM to know unfortunately but because the nechaniams abd ingredients of those are so mysterious hard to know if its just supporting you or inteferibg with recovery

I think its a goid conclusion that its not somehow cancelling out the benefits of probiotics but instead a new issue (compketely differe t issue but what happebs to you on antibiotics?

I know that feeling very well- the die i do this to myself?! But hell, its better than when ite because someone else did it to you! Easier to cone to terns with. You made a good decision based on info you had- not because some MD told you to do something

Ive been wary about LDN and decided i would never try it. But cant rememver why and im sure it only applied to me. Some people love LDN. I cannot tolerate CBD or even hemp.

Keep us posted. Hope it clears out quickly

 

[Guwop2]

Thank you, will keep thing updated about any recover I make.

Just one question, you mentioned:

"theres something - a simple substance - that affects dopamine turnover- just cant remember it or the details."

I dont suppose youre able to remember what this might be?