• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Clostridium Butyricum - A Game Changer?

alicec

Senior Member
Messages
1,572
Location
Australia
Thank you everyone for suggestions about dealing with lymphatic congestion. I put these into effect as well as having acupuncture and have had considerable relief. I realise that the trick is to do these things consistently - but how to keep up the momentum as enthusiasm and motivation drain away and procrastination and fatigue set in? It's an ongoing challenge.

The mild gut discomfort from the miyarisan has disappeared but another problem has emerged - or rather, has been brought to my attention since it has been there to some extent for several weeks, just getting worse. My always somewhat overreactive sympathetic nervous system is getting out of control again - nothing too drastic but the sleep disturbance in particular is taking a toll.

I've been puzzling about what is behind this and thus how to deal with it when @mariovitali's pertinent post appeared. I do have several snp's associated with choline metabolism and other evidence of disturbed lipid metabolism, so even though I regularly eat choline rich foods I also supplement with PC (the micellar version from Body-Bio that is not metabolised but directly incorporated into cell membranes) and choline bitartrate. The latter serves several purposes, including stimulation of acetylcholine production which, at least till recently, helps balance the overactive SNS.

Several months ago I observed that the dietary and pre/probiotic changes I was making seemed to have had a marked effect on neurotransmitter balance and I was developing symptoms of acetylcholine excess. I stopped the choline bitartrate (and acetyl carnitine) and the worst of the problem settled down. Now things have swung back in the other direction so I am trying adding back the choline bitartrate.

@mariovitali's post shows in part what might be happening; butyrate production is increasing and driving down choline.

I realise this is a crude analysis of what is undoubtedly a much more complex situation and that intervention with supplements is also a crude measure. But at least at this point it does seem to be helpful - eventually I hope that as more metabolic pathways are normalised artificially attempting to boost select ones will become unnecessary.
 

Sidereal

Senior Member
Messages
4,856
Do you mind expanding on this? I'm all ears...

You might wanna check out @nandixon's recent poll. There seem to be two subsets here; one that does well on vit D, the other where toxicity symptoms develop rapidly and even hypercalcemia. The latter group I think could benefit from K2, and there are some here who have done very well on K2, but as we've also seen often times supplementing these things directly leads to problems. But the basic problem still stands of calcium going to the wrong places all the time.

http://forums.phoenixrising.me/inde...lement-tolerance-and-calcitriol-levels.37345/
 
Last edited:

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Well, this is all very interesting..........
Part 2
It's been a week. I unwisely didn't pay the degree of attention to @Sidereal that I should have. Curiosity got the better of me and I started to up my dosage from 2 a day to 4 on Tuesday and 6 yesterday. It was a mistake but not a disaster.

I woke up this morning in a sweat, sore throat, stuffy nosed and a just a little bit like having a cold. (To call it fluey would be a gross exaggeration.) My joints pains are worse than usual and have been for a couple of days. I would have put this down to others reporting pain and this making me more conscious of it but the joints are also more tender to a squeeze and are objectively stiffer. Weirdly, my ankles have been intensely itchy in the evenings. So definitely some mild immune stuff going on but nothing like some of you are going through. It's possible of course that the sweatiness and sore throat is just the mildest of mild PEM, because I've been more active than usual, rather than it being directly due to the CB.

The good news is really good though. Before I started the CB, the sedated feeling I was experiencing was so bad I kept wondering what it would feel like to batter my brains against the wall. Best case scenario is that I wouldn't feel much at all, worst case at least the pain would distract me from the regular torment.

Now I feel much as @adreno reported in his OP: "overall less sick and more like a normal person"

The response I've had so far has been really quick and significant but my M.E. is mild anyway so, presumably, there's less going haywire and what is wrong is mostly less wrong.

Anyone else started on CB recently? How are you doing on it?
 
Messages
25
Location
Canada
AOR3 helped constipation too but messed me up, severely, in other ways as I wrote about on the RS thread. I am sure only people with severe ME or specific problems with strep would end up with those complications. I've heard from patients with milder conditions who tolerate AOR3 no problem.

Well, AOR3 as you know contains a species of strep. No problemo for normal people but strep and I go way back. I developed a root canal tooth after AOR3 which cleared up after stopping the supplements and a month or so of herbal antimicrobials. If you look at the literature this species of strep is commonly found in root canal teeth. Most people will have no problems with this probiotic though.
[

I have had a similar experience with AOR3.

I have severe ME and have dealt with tooth-related problems for most of my life. Root canals, infections and cysts at the end of root canals, I have had it all. Read about @Sidereal's problems with AOR3 on the main thread after having ordered it, so when it arrived I started taking it anyways. All went well for 4-5 weeks, when I noticed a root canalled tooth starting act up (jaw pain). Stopped taking the AOR3 right away, about a week ago and my tooth has calmed down significantly.

I have been on Miyarisan for about 6-7 weeks. I can take 4-5 tablets twice a day without noticing any negative side effect. But then again I am pretty much bedbound and in pain most of the time. Gastro-intestinal problems abound as well. These have changed since taking pre- and probiotics (and I take a bunch of different ones), but things are still far from normal. Still waiting for that 'Bristol Type Awesome' stool someone (@adreno, maybe?) talked about on the main RS thread...

Still, I have definitely seen improvements since taking pre- and probiotics. Unfortunately (from a scientific perspective) I changed too much at once to be able to say which changes led to the improvements. Impossible to not like the Miyarisan, though, as it is sooo much cheaper than most of the other stuff I take!
 

bertiedog

Senior Member
Messages
1,740
Location
South East England, UK
Haven't got time to go through all the thread but does it have to be refrigerated? I received mine 2 days ago through EBAy and arrived in 10 days to UK. Have taken 2 tablets x 2 yesterday with no ill effects. Will go up to 2 x 3 today.

Pam
 

Sidereal

Senior Member
Messages
4,856
I received mine 2 days ago through EBAy and arrived in 10 days to UK. Have taken 2 tablets x 2 yesterday with no ill effects. Will go up to 2 x 3 today.

Just to add, the immune reaction to pro/prebiotics can take several days or weeks to build up and at that point it can range from mild to severe. I wouldn't conclude on the basis of one dose that this dose will be tolerated on a daily basis or that you should up the dose.
 

Sidereal

Senior Member
Messages
4,856
@alicec, do you take larch arabinogalactan by any chance? That one caused major acetylcholine hell for me. I felt very good on it initially but then stopped being able to sleep altogether and had the agitation, muscle twitching, myoclonus etc. thing going on for weeks.
 

Gondwanaland

Senior Member
Messages
5,095
Last night I took a mix of Lactobacilli including acidophilus, and for the 1st time since I started my healing journey in 2013 I felt not only well on it, but actually BETTER. Woke up this morning FREE of joint pain. Finally!

I decided to take acidophilus after delving into the oxalate universe. Both acidophilus and bifidum are said to lower oxalates. It worked :thumbsup:

Now to plan my next CB dose. I will make it a 1/4 tab in the next round, 1x weekly :cautious:
 

Asklipia

Senior Member
Messages
999
I've fermented 1/2 pill into 24 hr. yogurt, now eating 1 tablespoon/day. First couple days I had some joint pain, none in the 4-5 days since. Next batch I'll use a whole pill.
How interesting!
Did you put it in milk only?
For how long, did you mean 24 hours? At which temperature? This is going to help! Not that I think that Miyarisan is expensive.
I think that for beginners it is nicer to be able to judge exactly how much you take, but for us who can gobble 12 a day no problem it could be very useful in the long run.
Good luck for everything!
:thumbsup::thumbsup::angel::thumbsup::thumbsup:
Asklipia
 

bertiedog

Senior Member
Messages
1,740
Location
South East England, UK
Just to add, the immune reaction to pro/prebiotics can take several days or weeks to build up and at that point it can range from mild to severe. I wouldn't conclude on the basis of one dose that this dose will be tolerated on a daily basis or that you should up the dose.

I have been taking various probiotics for over 5 years every day so I don't really expect too much. Also I am doing great at the moment on herbal treatment for borrelia but think I still probably have a residue to yeast issues and maybe a bit of bad bacteria too.

Any antifungal like Oregano oil will give me constipation so there has to be something still off.

Pam