Clostridium Butyricum - A Game Changer?

[alicec]

What do you make of the fact that your NMH may be coming back as a result of the Miyarisan? (I'm wondering if you mean it's because that's a sympathetic nervous system thing? Pardon my biological ignorance!)

I imagined that it had settled down because my electrolyte/fluid balance was much better, as evidenced by my polyuria and polydipsia improving markedly (yes I noted the discussion above about acetylcholine and polyuria but many things can cause polyuria).

Probably it is just a transitory thing resulting from my taking more miyarisan than I can cope with at the moment. I'm not particularly concerned - will just press on and see what happens.

 

[Sasha]

Is it likely that Miyarisan (or any pre/probiotic) that exacerbates OI at a higher dose might improve it at a lower dose? Is there a plausible mechanism for that?

Again, pardon my biological ignorance, folks!

 

[Gondwanaland]

We did wander right off topic and I am mainly responsible. I am sorry.

I take the blame for it

I think it is a good idea to split the topic because a discussion on oxalates was showing itself relevant for more people as well, @Sidereal @whodathunkit ?

some symptoms crept back : swollen lymph nodes, pain in the knees, harder stool, slight bloating. I had thought they were gone for good, but the beastie is still there it seems, and indeed the Miyarisan disappears from the gut after a few days.

OK I finally recognize my swelling as clogging of the lymphatic system, So is Miyarisan the antidote???
It has been getting much worse in the middle of the night either if I take acidophilus or not it seems to have its own cycle. I have some neck tenderness and also under the ribcage at my back close to the right armpit

@alicec if you have some lymphatic clogging as well I think it makes sense that choline (fat) makes it worse.

 

[Asklipia]

OK I finally recognize my swelling as clogging of the lymphatic system, So is Miyarisan the antidote???
It has been getting much worse in the middle of the night either if I take acidophilus or not it seems to have its own cycle. I have some neck tenderness and also under the ribcage at my back close to the right armpit

There is a time cycle for liver activity. There are ultradian rhythms at work. When the liver has done its job, the lymph is pushed on towards the gut (together with nasty products if there are some - if the lymph is toxic you feel pain). If your liver is clogged, nothing happens and you get lymphatic swelling before the liver, that is on the thymus area, left breast (hence more cancers in left breast rather than right breast), left clavicle (this is where Catholics tap for "its my fault" to get the memories of bad deeds released - this is where EFT practionners tap to reverse negativity). Because there is a sharp turn in the lymphatic duct there, it gets clogged more easily because of the sharp turn. When too clogged it poisons the area > heart attacks.
If not clogged the lymph then goes from lymphatic duct to blood vessel same spot on the right to go to the liver and be processed.
If not clogged and the liver is not working, then the body will resort to all kinds of tricks for avoiding overwhelming the liver, for example wanting to turn the head to the left to block the toxic lymph from going up to the brain.
Because the moment when your liver has done its job is around 3 am, all religions advise rising at that time to have a modicum of activity, be it praying or singing, to help scatter the lymph. Bringing better health overall.

Some of what we think are bad symptoms are just a clever way of the body to make us survive.

@alicec if you have some lymphatic clogging as well I think it makes sense that choline (fat) makes it worse.

Fat helps the liver, it does not make lymphatic clogging worse.
I am sorry but I have no references for what I wrote here, this is just my personal yogic experience.

 

[Sidereal]

Increasing my acetylcholine could explain the unusual polyuria I've been experiencing lately. Sadly, I'm enjoying the effect the uridine, citicholine, and ALC are having on my mental state, but it's more important that I not wake up to pee in the night, so they're off the table at least for now. Do you know if nocturia is or can be the primary manifestation of too much acetylcholine? Weirdly, I don't seem to be having polyuria during the day, only at night.

It's possible, I don't know. I will say that daytime polyuria in ME/CFS can creep up on you over the years and become the norm and you don't even realise how often you've been urinating until it goes away and you realise what you'd come to view as normal is far from.

Bladder emptying is triggered by activation of the acetylcholine muscarinic receptors. If it's just overactive bladder from cranking up acetylcholine, you'd expect diphenhydramine to help.

Causes of polyuria in ME/CFS are multiple. Many have low vasopressin (antidiuretic hormone). Some have interstitial cystitis which seems to be an oxalate issue. Then there is solute diuresis during PEM when the body seems to be dumping acid and electrolytes.

For me, I seemed to have all those problems yet Clostridium butyricum got rid of severe polyuria I'd had for a few years which I had to take nightly diphenhydramine for. Don't ask me how.

 

[Sidereal]

@Sidereal Are you talking about the effects of C butyricum, or of beta alanine? (this thread has wandered into beta alanine, not sure which you mean when you say something raises your acetylcholine)

C butyricum and many other pro/prebiotics.

Am I the only one who is getting lost on this thread? (brain fogged state here) Are we still talking about c. butyricum, and is there some effect suspected of c. butyricum on oxalates or something to do with beta alanine?

I dial into this thread every single day, and I don't skip any messages.

I don't disagree that it's difficult to follow all these side conversations but the trouble is (judging by the experience on the RS thread which ran for 1.5 years) that people very often run into pain issues when trying to modify the microbiome and have to stop the supplement as a result. @alicec has brought extremely pertinent information about oxalates possibly being the culprit. I wish it were off-topic but I suspect for many here it won't be. If people want to start a new thread, great, but to my mind this is a major obstacle to trying to modify the microbiome for a lot of people with more severe versions of ME.

 

[Sidereal]

Is there such a thing?

I had a couple of days break from CB just in case it was causing these problems but I've been back on my 1/4 tab for the past couple of days.

Has it made anyone else's OI worse? I've been lightheaded for a few days now.

There's no such thing as flu detox but you are bound to get flu-like symptoms if you're taking stuff that's working to raise your cellular immunity and displace pathogens. Worsening OI is part of that. What I would do is stop the supplement until things return to "normal", then restart at a much lower dose and build up slowly.

I took a month's break from CB, now restarting at 1/4 tab. I may not even take it daily. It's one of the most powerful things I've ever tried, second only to XOS and marine phytoplankton.

 

[Sasha]

There's no such thing as flu detox but you are bound to get flu-like symptoms if you're taking stuff that's working to raise your cellular immunity and displace pathogens. Worsening OI is part of that. What I would do is stop the supplement until things return to "normal", then restart at a much lower dose and build up slowly.

I took a month's break from CB, now restarting at 1/4 tab. I may not even take it daily. It's one of the most powerful things I've ever tried, second only to XOS and marine phytoplankton.

That's good to know.

I had been thinking of just taking a break until I was back to 'normal' but I'd expected that to be maybe a few days after the CB had moved out of my body - maybe a week or something.

Why did you take a month? Did it take that long for things to settle back down?

 

[Sidereal]

There is a constellation of symptoms that I contend with all the time - viz brain fog, blurred vision, muscle tension and pain particularly in the back of the neck and trapezius, sleep disturbance. They wax and wane but mostly are tolerable. Many different things can make some or all worse.

Back before the miyarisan (but I realise when I think about it that I was taking AOR 3 then) they started getting a lot worse, particularly the muscle tension and pain, and as well I started feeling quite agitated.

All this sounds very familiar. It happened most dramatically to me on things that really worked like larch arabinogalactan (acetylcholine hell) but CB cranks it up too. I'm not surprised to hear choline supplements worsened your brain fog; they make me feel drunk and disoriented. We were discussing this on another thread recently and there appear to be two subgroups - some people do well with choline, others get worse.

When you say NMH, do you mean actual NMH where after some time of being upright you get crashing BP and pulse and (pre)syncope due to parasympathetic excess or do you mean orthostatic hypotension?

 

[Sidereal]

That's good to know.

I had been thinking of just taking a break until I was back to 'normal' but I'd expected that to be maybe a few days after the CB had moved out of my body - maybe a week or something.

Why did you take a month? Did it take that long for things to settle back down?

My digestion had gone to hell and I had to take a break from everything. I don't think CB moves out of the body. The changes it has made to my gut, both positive and negative, are still there despite not taking it for many weeks.

 

[Sidereal]

Is it likely that Miyarisan (or any pre/probiotic) that exacerbates OI at a higher dose might improve it at a lower dose? Is there a plausible mechanism for that?

Yes, absolutely!

 

[Sasha]

My digestion had gone to hell and I had to take a break from everything. I don't think CB moves out of the body. The changes it has made to my gut, both positive and negative, are still there despite not taking it for many weeks.

So you think it colonises?

Is there consensus on what colonises and what doesn't?

 

[Sidereal]

So you think it colonises?

Is there consensus on what colonises and what doesn't?

I don't think there is consensus on anything when it comes to the microbiome.

 

[Sidereal]

I imagined that it had settled down because my electrolyte/fluid balance was much better, as evidenced by my polyuria and polydipsia improving markedly (yes I noted the discussion above about acetylcholine and polyuria but many things can cause polyuria).

Exactly. CB markedly improved my fluid balance too but excess muscarinic stimulation will still cause bladder contractions and that still happens occasionally if I've overdone on the prebiotics and have cranked up the Ach too much. The difference is that now I just get the urge to go but almost no urine is produced during these too-frequent trips unlike before CB when litres and litres were produced each day and I couldn't function at all without diphenhydramine. There are a number of polyuria mechanisms operating in ME, I think.

 

[whodathunkit]

The diphenhydramine didn't do anything for me last night. But I only took one tab as I was afraid of getting too drowsy and not wanting to wake up in the morning. I may take double tonight since I'm off work tomorrow, just to see what happens.

But I'm not too sanguine. The problem most likely doesn't have much to do with acetylcholine, anyway. I was hoping for maybe an "easy" fix with a couple tabs of Benadryl but I'm fairly sure it has to do with my long-standing, chronic, and fairly intransigent cortisol/adrenal and sex hormone problems. There have been so many improvements in these areas but I never seem to quite tip the balance over into normal. If I could get to the point where I could consistently sleep for at least four solid hours per night without waking up I'd think I was cured. I typically get up at least three times per night and during certain times of the month as much as once per hour. This has been going on for years, even though it did seem to get worse around the time I started the nootropics again. But the pattern got old a long, long time ago. </whine>

To bring this post back around to the topic of the thread: I've been consistently taking the c.butyricum in one form or another (AOR3 or Miyarisin) since about the beginning of January and it hasn't done a dang thing for the polyuria.

 

[Sidereal]

@whodathunkit, have you had your vasopressin measured? Docs like Kaufman say vast majority of their M.E. patients are low.

 

[whodathunkit]

@whodathunkit, have you had your vasopressin measured? Docs like Kaufman say vast majority of their M.E. patients are low.

It's actually on my list of things to talk to my doc about when I go see her in the next couple of months. I keep hoping, though, that as I get healthier (and I am making strides there,whining aside) the problem will resolve itself as my hormones get better along with the rest of me

The other thing about the problem is I have large uterine fibroids so they probably play some role. The orientation of uterus/fibroids to the bladder is obviously going to be different when I'm awaking and sitting/standing than it is when I'm laying down. But I do suspect vasopressin or ADH is low regardless of how large my uterus is.

Sid, do you know anything about Desmopressin? It's supposed to be a synthetic version of vasopressin. It's used as a nootropic because it reportedly increases short-term memory retention. I think it's another one of those "failed pharmaceuticals" which is one reason I haven't tried it for my problem. Well, that, and the fact that there isn't much anecdotal chatter about using it for polyuria. Who knows what the sides are, or whether or not using it could cause endogenous creation of vasopressin to fall further, etc. If I could find anyone I trusted who recommends it, though, I might give it a go.

Also, that you know of, is there a combination of supps that might be used to boost endogenous creation of vasopressin? I've had some success in the past with combining glutamine + glycine + NAC to boost production of glutathione, for example, so am wondering if there's something to try for vasopressin. I've done a little searching but not turned up anything.

 

[Sidereal]

Sid, do you know anything about Desmopressin?

I'd forgotten you have fibroids. Perhaps this is causing your urge to urinate when you lie down and is why the urination issue flares up at the "time of the month"? Desmo is too dangerous when the problem is intermittent IMO.

 

[whodathunkit]

I'd forgotten you have fibroids. Perhaps this is causing your urge to urinate when you lie down and is why the urination issue flares up at the "time of the month"? Desmo is too dangerous when the problem is intermittent IMO.

Well, the problem is pretty much chronic and ongoing. You can't really call it a flare since it's always flaring...it's just varying degrees of bad. On any given "good" night I get up only 3 times. Very, very rare is the night I don't get up at least thrice. But the 'roids could still account for this.

On the bad nights (typically around hormonal times like the past couple miserable nights) it can be between 5 - 8 times.

I'm convinced about Desmopressin...I'd rather keep getting up than run any risks screwing my endocrine system further. Most nights except the bad ones I manage to get some quality rest in between the wakings. So I'm not going to try the Desmo. But why dangerous? I didn't read anything about it being dangerous even if I also didn't read about it being useful for polyuria caused by low vasopressin.

 

[Sidereal]

Well, the problem is pretty much chronic and ongoing. You can't really call it a flare since it's always flaring...it's just varying degrees of bad. On any given "good" night I get up only 3 times. Very, very rare is the night I don't get up at least thrice. But the 'roids could still account for this.

On the bad nights (typically around hormonal times like the past couple miserable nights) it can be between 5 - 8 times.

I'm convinced about Desmopressin...I'd rather keep getting up than run any risks screwing my endocrine system further. Most nights except the bad ones I manage to get some quality rest in between the wakings. So I'm not going to try the Desmo. But why dangerous? I didn't read anything about it being dangerous even if I also didn't read about it being useful for polyuria caused by low vasopressin.

Desmopressin is a life-saving medication for diabetes insipidus. If you do a search here on PR you will find people who use it with great success. You will also find accounts of people who have had complications. It's a very serious drug. I don't know what you've been reading. It's not something you can just take willy nilly without supervision of a good endocrinologist (those are hard/almost impossible to find). If dosed improperly you can stop urinating, get hypervolemic, hyponatremic, and in severe cases, die. The reason I think it's risky in ME is because DI in ME is only partial and urinary output varies depending on PEM, star alignment and who knows what else.

(I'm gonna have to leave it there because at this point I get the impression I'm gonna get banned from this website if I drag any more threads off-topic.)