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    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.

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The Resistant Starch Challenge: Is It The Key We've Been Looking For?

Sidereal

Senior Member
Messages
4,856
I don't know if it's like this for you, but I tend to horribly procrastinate over doing just about anything. I feel that it's not so much because of lack of energy, I feel I can push through that, but mostly due to brain fog. It's always so hard for me to focus and keep things straight in my head and I'm always afraid I will make some fatal mistake. This causes a lot of stress and I seem to have also developed a pathological aversion to anything that increases stress... which deters me even more.

I have that too but my main problem is lack of mental and physical energy to actually do anything. Even if I push through these low dopamine symptoms I still get very little done because I cannot sustain attention or muscle work for long.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
The first week or so I had some GI upset with Miyarisan. If I take too big a dose I get sinus headaches. I also get herpes reactivations if I take too much.

Glad you're having some improvement! When I tried Prescript Assist last year, I noticed no effects one way or the other at a low dose (1/4 capsule) but when I went up to 1 capsule/day, I had what I then thought was a sinus headache (and now think would have been a migraine) every day and got cold sores on my lips.

@Jonathan Edwards - I doubt you've been looking at this mega-thread but as someone who knows about immunology, I wonder what you make of these kinds of reaction (to probiotics in this case). Can the provocation of certain symptoms be a sign that something is doing something good to the immune system, even if it's a sign that the dose is maybe too high?

I find it hard to understand what's a good sign and what's a bad sign with these things and there seems to be nowhere to get clinical guidance. We're all stuck with self-experimenting.
 

Sidereal

Senior Member
Messages
4,856
I find it hard to understand what's a good sign and what's a bad sign with these things and there seems to be nowhere to get clinical guidance. We're all stuck with self-experimenting.

There is no clinical guidance on this because the science is new and light years away from being advanced enough to inform clinical decisions. Hence, as early adopters of this microbiome stuff, we are on our own with our N=1s.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
There is no clinical guidance on this because the science is new and light years away from being advanced enough to inform clinical decisions. Hence, as early adopters of this microbiome stuff, we are on our own with our N=1s.

It would be nice to have clinicians discussing algorithms, though, even if not specific treatments.

I wonder how long we'll be on our own for. :(
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Glad you're having some improvement! When I tried Prescript Assist last year, I noticed no effects one way or the other at a low dose (1/4 capsule) but when I went up to 1 capsule/day, I had what I then thought was a sinus headache (and now think would have been a migraine) every day and got cold sores on my lips.
I'm leery of using any multi strain probiotics. If you have an issue with a particular formulation you're going to have a hard time pinning down exactly which strain you're having a reaction to. On the other hand, there doesn't seem to be a very wide variety of single strains available for sale.

Then again, you could have just been experiencing some sort of transitory die off symptoms. It's so hard to say. Like Sidereal said, this is all still in it's infancy and all we can do is self experiment.
 
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Sidereal

Senior Member
Messages
4,856
I'm leery of using any multi strain probiotics. If you have an issue with a particular formulation you're going to have a hard time pinning down exactly which strain you're having a reaction to. On the other hand, there doesn't seem to be a very wide variety of single strains available for sale.

Single strain probiotics such as Miyarisan and Align have produced much more potent results (good or bad) for me than multistrain probiotics.
 

whodathunkit

Senior Member
Messages
1,160
Was it Nikoley or Tim Steele that got the ball rolling on RS?
I dunno who started doing RS first but Richard was the big promoter of it with "Free the Animal". My understanding is they're friends. Tim comments frequently on FTA and has posted there, but he wasn't the main publicity driver.

That's neither here nor there. My main point was throwing the baby out with the bathwater and dismissing everything someone has to say just because they're an asshole about some things. I have a tendency to do that about certain habits/traits, and it's a hard thing to unlearn. But I'm better off for unlearning it.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Yep, people are complex. I should mention that Richard gave a prominent mention to the Microbe Discovery Project on Free the Animal, which was very kind of him - he gets loads of views on that blog and I hope that some people would have donated and/or passed the information onto their friends with ME/CFS.
 

dannybex

Senior Member
Messages
3,573
Location
Seattle
I forgot to mention also that my water balance has improved while on C butyricum. Frequent large volume urination and thirst is my worst symptom and this seems to be dramatically improved. I've been able to stop the antihistamines and LDN which I used to have to take to deal with this problem.

That's really encouraging @Sidereal. I've been peeing like a drunken racehorse for probably 2 decades now, and haven't been able to turn it around. Also interesting to hear of the possible histamine connection again...
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Glad you're having some improvement! When I tried Prescript Assist last year, I noticed no effects one way or the other at a low dose (1/4 capsule) but when I went up to 1 capsule/day, I had what I then thought was a sinus headache (and now think would have been a migraine) every day and got cold sores on my lips.

@Jonathan Edwards - I doubt you've been looking at this mega-thread but as someone who knows about immunology, I wonder what you make of these kinds of reaction (to probiotics in this case). Can the provocation of certain symptoms be a sign that something is doing something good to the immune system, even if it's a sign that the dose is maybe too high?

I find it hard to understand what's a good sign and what's a bad sign with these things and there seems to be nowhere to get clinical guidance. We're all stuck with self-experimenting.

I think I have to pass on that one. I doubt reactions are a sign of anything very useful.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I've still got this acid reflux thing going on and I'll be getting test results for h. pylori next week. If they're positive, I assume I'll be on abx.

If that happens, I'm thinking it would be wise to be on some probiotics. I had been on VSL3 but stopped that when the reflux started in case it had been causative - and I've been advised on this thread that the lactobacillus acidophilus in it isn't very good for PWME.

What should I take? I'm thinking I should be ordering them now so that they're here in time.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
If I have an ulcer, is that any reason not to take probiotics? I've been holding off trying new ones in case it's an ulcer or SIBO causing the reflux.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
What should I take? I'm thinking I should be ordering them now so that they're here in time.
Priobiotics are tricky and very dependent on individual biology and I'm far from being an expert on the subject.

I can't vouch for the veracity of this information but I will leave this for you to consider...
The effect of probiotic treatment with Clostridium butyricum on enterohemorrhagic Escherichia coli O157:H7 infection in mice

Probiotics are viable cell preparations that have beneficial effects on the health of the host [13]. Clostridium butyricum is a butyric-acid producing gram-positive anaerobe, found in soil and intestines of healthy animals and humans. The MIYAIRI 588 strain of C. butyricum has been used as a probiotic for the treatment and prevention of non-antimicrobial induced diarrhea as well as antimicrobial-associated diarrhea in human and animal [14,15]. This strain has been approved for human clinical use since 1968 in Japan. The mechanism, by which C. butyricum controls diarrhea, is considered to be complex. For example, C. butyricum has been shown to have antagonistic interaction against Candida albicans, Clostridium difficile, enterotoxigenic E. coli, Klebsiella spp., Salmonella spp., Vibrio spp. and Helicobacter pylori [16–21]. In addition, butyric acid produced by C. butyricum has a proliferative effect on mucosal cells in the intestine [22] and it was reported that butyric acid produced by C. butyricum has therapeutic efficiency against the inflammatory bowel disease [23].
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
Are people here who are using C. butyricum using Miyairi?

Anybody here getting this stuff in the UK? Where from?
 

Sidereal

Senior Member
Messages
4,856
Effect of Clostridium butyricum on fecal flora in Helicobacter pylori eradication therapy

Abstract

AIM: To investigate the effect of probiotic bacterium, Clostridium butyricum MIYAIRI 588 strain (CBM) on the changes of the fecal flora in Helicobacter pylori (H pylori) treatment.

METHODS: Thirty-five patients with gastric or duodenal ulcers positive for H pylori were randomized either to 1 wk amoxicillin, clarithromycin, lansoprazole (Group 1) or to the same regimen supplemented with CBM 7 d ahead of the triple therapy (Group 2). Stool samples were collected before and 2, 4, 7, 15, and 22 d after the starting eradication therapy, and were examined intestinal fl ora. Patients were required to keep a diary record of their condition.

RESULTS: Obligate anaerobes decreased significantly on d 2, 4, 8 and 15 in Group 1. On the other hand, they did not decrease significantly in Group 2. The Escherichia coli was dominant bacterium in Enterobacteriaceae , but that was replaced by other species such as Klebsiella and Enterobacter after eradication in Group 1. The change was suppressed in Group 2. Abdominal symptoms were less frequent in Group 2 than in Group 1.

CONCLUSION: The combined use of CBM reduced the changes in the intestinal flora and decreased the incidence of gastrointestinal side effects.

http://www.wjgnet.com/1007-9327/11/7520.pdf
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Are people here who are using C. butyricum using Miyairi?
I think the brand that most of us are using is Miyarisan.
Anybody here getting this stuff in the UK? Where from?
It's available on Amazon in the US but doesn't seem to be available on the UK version of the site. There are also people selling it on Ebay.
 
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