(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?

 

[vision blue]

Hi- i just saw this message now.

So far cannot remember. Not sure it would help you?

For me, i think the reason it landed on my radar is i appear to have high dopamine and deplete MAO-A enzyme with perhaps the former the cause of the latter.

One would think that the worst thing a perdon with high dopamine woukd want to do is decrease dopamine turnover, but reqd apparently seeminglyb prqdoxicallyb it might be my high turnover that forces my body to keep making more as well as requiring to much mao for breakdown and alson cause of too much nor epinephrine

So put it on burner to possibly try this. Then i tbink i got covid which has a tes lije this huge reset button on all plans thoughts to do lists etc.

 

[Nord Wolf]

I have stopped taking the Beta-blocker (10mg propranolol) and instead am taking some TCM pills, that calms things down a lot

If you don't mind me asking, what was the cause for shifting between propranolol and the TCM formula? Obvious guess would be changing from Pharma to something natural? What are the TCM pills called?
I take propranolol at 20 mg when absolutely needed. My background nervous system is a mess and extremely difficult to control when it flares up. The below image is from yesterday. The entire time you see the high stress readings I was doing nothing but laying in bed "resting", but not sleeping. You can see the nervous system screaming in the background. The small blue section labeled PEMF mat was when I was laying on my polarized electromagnetic frequency mat for 10 minutes. But after taking the 20 mg you can see how it leveled out the rest of the day... except when I took a shower.
When is it with showers!!!!!???? I typically can only take them 4 times a week and only when sitting on a shower chair with a backrest, and still the nervous system shoots up.

 

[Guwop2]

If you don't mind me asking, what was the cause for shifting between propranolol and the TCM formula? Obvious guess would be changing from Pharma to something natural? What are the TCM pills called?

Hello Nord Wolf -)
The reason for shifting to TCM was that I felt it was more of a long term solution. Also, id used it beofre when id had a crash and it worked - it's actually helped a lot this time. I found it to actually be equally as effective as the propranolol.

I started taking these - given to me by a highstreet TCM practitioner - there are loads of these TCM places dotted around central London. Started taking it for ezcma a while back, but found it was very effective for pacifiing my nervous system. I was on that for a week, and then my sisters boyfriend, who's a TCM practitioner, fixed me up with a powdered formula, whcih ive been using since. This formula was basically a replication of these pills I linked (I cant vouch for that wesbite though - i didnt buy them online) but with a few alterations. I would say give this angle a try if you are able, could be beneficial considering the huge spikes in that graph you posted.

 

[hapl808]

Propranolol unfortunately didn't work great for me. Only lowered my HR a bit, and made me feel even worse when it wore off. I didn't take a very high dosage, though.

Here's a not unusual day for me. Mostly out of bed, but not doing anything strenuous other than make some food, sit at my desk, etc.

 

[Guwop2]

Propranolol unfortunately didn't work great for me. Only lowered my HR a bit, and made me feel even worse when it wore off. I didn't take a very high dosage, though.

Here's a not unusual day for me. Mostly out of bed, but not doing anything strenuous other than make some food, sit at my desk, etc.


View attachment 50987

is that a pulse measurement and if no, how are you measuring it? a smart watch?

 

[Nord Wolf]

Propranolol unfortunately didn't work great for me. Only lowered my HR a bit, and made me feel even worse when it wore off. I didn't take a very high dosage, though.

@hapl808 Interesting. Do you have MCAS by chance? Beta blockers can cause Mast Cell Degranulation:
https://www.sciencedirect.com/topics/medicine-and-dentistry/mast-cell-degranulation
I don't have MCAS so beta blockers don't seem to cause negative reactions in my system.

Here's a not unusual day for me. Mostly out of bed, but not doing anything strenuous other than make some food, sit at my desk, etc.

Yes my average stress charts registered on my Garmin watch show about the same. As soon as I wake in the morning my ANS stress levels rise quickly. If I sit up in bed, or attempt to get out of bed it skyrockets and remains running at redline until I lay back down again. Breathing exercises to activate the parasympathetic can lower it some, but only temporary (meaning as soon as I move again the ANS stress levels rise again), and if I am well enough to manage shuffling out the backdoor to lay in the snow the stress levels plummet. But again, as soon as I stand back up they shoot up again.
The propranolol drops the ANS stress levels down to the blue level and keep them there. I will have short spikes if I get up to urinate, but as soon as I sit and recline or lay back down the levels drop back into the blue.

I started taking these - given to me by a highstreet TCM practitioner - there are loads of these TCM places dotted around central London. Started taking it for ezcma a while back, but found it was very effective for pacifiing my nervous system. I was on that for a week, and then my sisters boyfriend, who's a TCM practitioner, fixed me up with a powdered formula, whcih ive been using since. This formula was basically a replication of these pills I linked (I cant vouch for that wesbite though - i didnt buy them online) but with a few alterations. I would say give this angle a try if you are able, could be beneficial considering the huge spikes in that graph you posted.

@Guwop2 - many thanks and glad they work for you. I actually tried that formula a few years back and it didn't do anything for me. I've tried so many natural methods and herbs over the years to no avail. When I was a kid and early teens the natural herbs worked well for me. But then it al changed. And today most don't touch my system unfortunately. It annoys me.

 

[hapl808]

@hapl808 Interesting. Do you have MCAS by chance? Beta blockers can cause Mast Cell Degranulation:
https://www.sciencedirect.com/topics/medicine-and-dentistry/mast-cell-degranulation
I don't have MCAS so beta blockers don't seem to cause negative reactions in my system.

I have some symptoms of MCAS, but I think it might be very specific environmental issues or something related, as things like cromolyn and ketotifen weren't particularly helpful.

Right now I'm sitting up but in bed and my Stress is only 40 and HR in the 90's. That's pretty good for me. Once I get out of bed (which I do most days) it'll go way up, even if I'm sitting at my desk. I still get out of bed as I think other than my HR, I do better when I make food and sit at a desk for at least part of the day. When I've spent a few days in bed my HRV improves, but it doesn't improve my baseline so I haven't seen the benefits.

If I could take beta blockers occasionally I'd be more likely, but it seems like I'd have to take them daily and since they didn't make me 'feel' better, not sure the numerical benefits would justify the risks.

But who knows.

 

[Judee]

is that a pulse measurement and if no, how are you measuring it? a smart watch?

I think he has a Garmin Watch. I have the Vivosmart 4 and it gives me those same graphs.