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

[Sasha]

This is my last post here.

What??? NOOOOOO!!! Come back! Come back!

 

[Sushi]

I don't believe I've posted anything that's rude, elitist or contrary to the rules, but if I did, I apologise. This is my last post here.

As a mod, I don't think you did either. But, please, rethink:

This is my last post here.

Sushi

 

[Sasha]

Seriously, this has been such a great thread - in over 3,000 posts, I think this is the first time I've seen a ripple in the pond. I've got a huge amount of respect and value for everyone who posts here and who shares their knowledge and experience.

I think there's been a misunderstanding here, and I hope that we might be able to put it behind us and move on. We're too good a group to break up the party. We've always had such a good tone of respectful discussion and mutual support.

Of all the threads on this forum, I think that this is one of the most promising in terms of potentially disease-changing interventions that patients can access themselves. I'd really hate to see this thread damaged, and people lost.

 

[Hip]

Just started a new poll asking whether or not patients have sensitivities to lactate-producing probiotics like Lactobacillus, and whether or not they suffer PEM from physical exercise. The poll is here:

POLL: Do You Get PEM From Physical Exercise? Are You Sensitive To Lactate Probiotics Or Prebiotics?

 

[Sushi]

Just started a new poll asking whether or not patients have sensitivities to lactate-producing probiotics like Lactobacillus, and whether or not they suffer PEM from physical exercise.

I am one of those odd bods who do well with VSL-3 but do get PEM from aerobic exercise, though I can get away with a bit of it using a heart rate monitor.

Sushi

 

[jepps]

I agree to @Sleeping Beauty and @whodathunkit concerning RS and fibres. It depends not on the severty of CFS or ME, how strong a reaction to the RS, fibres or probiotic is. I know young people with severe CFS and ME, who are not able to work since years, or are temporay bedbound (one is severe ill since Rituximab, other because of a viral illness). They all react very different to RS and fibres and probiotics: not at all, severe reaction after tiny amounts, slight reaction after normal dosation, etc.
I also know people, who does not have CFS or ME, or work fully, and they react to tiny amounts so hard, that they cannot take tiny tiny amounts of fibres or RS or probiotics after trying it for months.
CFS or ME can be accompanied with SIBO, FODMAP´s or overgrowth of lactos, but it must not.

And, @Sidereal please stay here. You and your posts are to important for the thread.
Different opinions also are important for a successfully progress.

 

[Hip]

I am one of those odd bods who do well with VSL-3 but do get PEM from aerobic exercise, though I can get away with a bit of it using a heart rate monitor.

Are you generally OK with lactate-producing probiotics, Sushi, or only the VSL-3 brand?

 

[Sushi]

Are you generally OK with lactate-producing probiotics, Sushi, or only the VSL-3 brand?

Okay with the lot of them, as near as I can tell.

 

[Hip]

Oh, but it is. It's a glyconutrient (monosaccharide) that feeds bacteria.

Sure, but note that a prebiotic is not merely a food for bacteria; a prebiotic is (loosely) defined as a food that feeds the good bacteria in the gut, but cannot be significantly utilized for nutrition by the bad bacteria.

So if NAG feeds many bacteria, good and bad, it would not be a prebiotic, by definition. Likewise sugar is a food that feeds good and bad bacteria, but is not classed as a prebiotic.



If lactate is the problem for a certain subset of ME/CFS patients, then this might explain why prebiotics are causing this subset significant problems: because prebiotics only feed the good bacteria, which tend to be the lactate producing bacteria.

It would be interesting to ask those here who have problems with prebiotics or lactate-producing probiotics whether they have the same sensitivities if they have a lot of sugar. If sugar is feeding both good and bad bacteria to roughly the same degree, it will not change the relative size of these two bacteria populations, so perhaps it would not cause problems. Whereas prebiotics will be promoting the good bacteria only, and so will tend to boost and feed this lactate-producing population.

 

[Sleeping Beauty]

Please, everybody, keep in mind my qualification: 'for lack of a better word'!!!

'Lost in translation' might not directly apply here, but I am ESL (English as a second language, might be a Canadian term).

I didn't mean to offend or attack any one in particular. As I said in my next post, I might be overly sensitive to this topic. I don't know what is going on so much in other threads - I am new to PR and this is the only thread I am really following. So I really apologize if I came across a bit brush. I am very direct, but since I am new here, you guys don't know that. I am also German, what can I say ? If I offended anyone, please forgive me!!!

As an aside, due to my symptom severity and difficulties when being upright, I type all my posts on my phone while lying down. It takes longer but requires the least energy. But it also means I don't elaborate as much as I should when I comment on things (which might be a good thing...?).

I am deeply in awe in what you all know and the level of understanding of and insight into ME/CFS you have. That is what kept me reading the entire thread - and rereading it.

To get back to the real issues: I get PEM from pretty much everything: emotional, cognitive, sensory, or physical overload. Two lunges and I feel it the next few days. I am practically bedridden - leaving the house about once or twice a month in a power wheelchair. Yet I have been able to eat yogurt and take most prebiotics I tried (except for baobab powder). I went dairy-free for about a month and when I went back to eating yogurt, didn't feel any worse (and as bad off as I am, I know it can get much worse still). I just got VSL #3 in the mail and will report on how that affects me. So far the probiotics I tried where the SBO based ones, as well as some individual strains (L. Plantarum, Bifidus infantis, C. Butyricum).

I also have POTS and tachycardia, meaning my heart rate goes above my AT threshold when I have a bad dream or turn around in bed. Since I am more active than that (not a lot, though), I am pretty much always overexerting myself, so part of my problem is that I have constant PEM, I think. Initially, the PS lowered my resting heart rate quite a bit, but, sadly, that effect didn't last.

 

[Hip]

He has often pointed out that he doesn't get destroyed by physical exertion unlike the rest of us and gets PEM symptoms mostly from mental exertion such as socialising.

There are other patients on this forum with mental-only or mental-predominant PEM, and such patients are recognized in the CCC, since the CCC defines PEM as arising from physical or mental exertion.

And a lot of patients with physical PEM do also get mental PEM. Perhaps you are one of them?

I would have thought, though, that the ratio of physical-predominant PEM to mental-predominant PEM patients would be something like 20 to 1.

 

[Sleeping Beauty]

What do you all think of this part of my 'bad' post (slightly edited):

To make the RS topic more approachable for everyone (and prevent people from doing what I did, that is starting to make changes to their diet while reading the thread, thereby not benefitting right away from major game-changing revelations such as on page 130 or 131 or the Miyarisan) maybe it is possible for people who have been experimenting with this for a while to summarize their own experiences with RS, Pre-biotics, and Probiotics. For example: degree of illness when starting RS, improvements since, things that worked and things that didn't and at which dosages. This could be put into one document that everone interested in the topic could be directed towards. Maybe for those of us not in the US, there could also be suggestions on where to buy the different products.

A summary of scientific explanations and links would, of course, also be helpful. This way newbies can learn faster, oldies don't have to repeat themselves too much, and more people would be able to benefit from 150 + pages of this thread.

Definitely beats one person having to write a summary of this entire thread...

I still think it is worth reading the entire thread, but in my case I took too much potato starch until coming across all the other pre-biotics mentioned in this thread, thereby making myself get worse unnecessarily, so to speak.

 

[Hip]

As an aside, due to my symptom severity and difficulties when being upright, I type all my posts on my phone while lying down. It takes longer but requires the least energy. But it also means I don't elaborate as much as I should when I comment on things

I hope you enjoy your time in this community — whether typing your posts horizontally or vertically!


Note that a new thread summarizing Miyarisan (Clostridium butyricum) was started by @adreno here. The first post nicely summaries the benefits and biochemical effects of this probiotic.


What were the "major game-changing revelations on page 130 or 131" of this thread that you are referring to? I just read these pages, and there was some interesting discussion on TLR-4 and T-regs, but could not find any thing major.

 

[Sleeping Beauty]

I was referring to these posts (two of which appeared on page 132, of course, sorry!):

You are right, no perfect plant compound, but I do like the mucilage rich plants as largely being among the most anti-inflammatory.

If only we'd known about mucilages being the "key" to preventing extraintestinal symptoms 130 pages ago we'd have been spared a lot of nasty inflammation.

No doubt, maybe I wouldn't have carpal tunnel syndrome from typing all those damn long posts. I'm not bold enough to megadose anything yet. Are you still getting semblances of a sulfur-bacterial die off?

These posts nicely summarized and crystallized prior developments in the thread (and in the thinking of Chris Kresser, Tim Steele, and others promoting RS, if I recall correctly). At least for me they did. So subsequently I focused on mucilages as prebiotics and was probably spared unnecessary inflammation. Hence I am very grateful to @Sidereal and @Vegas for spelling it out so that even I managed to pick up on it!

 

[JPV]

Here is how I took these comments on this particular thread: yes, it could be interpreted as above, but I think this group is trying to tease out what makes us different in order to get a better idea of what protocols might work for whom--not to put anyone down as being "less sick." So, my take is that this little sub-discussion is not meant to imply elitism, but is more an attempt to identify the differences between us that make it impossible for one treatment to benefit all.

Yeah, this is how I also interpreted the comments that were made. I didn't see it elitist in any way. I don't think the intent was to marginalize someone else's condition. I think it was an attempt to differentiate between different subgroups in order to determine if a certain approach would or would not be of benefit to others.

 

[Hip]

These posts nicely summarized and crystallized prior developments in the thread (and in the thinking of Chris Kresser, Tim Steele, and others promoting RS, if I recall correctly). At least for me they did. So subsequently I focused on mucilages as prebiotics and was probably spared unnecessary inflammation. Hence I am very grateful to @Sidereal and @Vegas for spelling it out so that even I managed to pick up on it!

I can't say that mucilage-rich herbs have help me. I tried slipper elm 3 grams daily (1 heaped teaspoon), but did not see much benefit.

Have you tried a leaky gut protocol, by the way?

 

[Hip]

Perhaps not the right place to make this suggestion, but it might be a good idea if every year we summarized all the best treatments discovered or pioneered by ME/CFS patients on this forum, and created a simple 1 or 2 page document that details them, along with links to the relevant threads for each treatment. That way, newcomers to the forum, and even old hands, could quickly see what helps.

We could also consider sending copies to the main ME/CFS doctors and clinics, as they might potentially find this treatment info useful.

 

[ariel]

This is my last post here.

I hope you reconsider.

You've been such a big part of this thread.
I never interpreted anything other than wishing to sort it all out, which you've been doing such a great job of. I certainly don't have the ability to sort through the science the way you do and really appreciate that someone else can.
I think we all get a lot out of knowing that others are in the same boat, plus contributing and adding our bit.
Everyone seems pretty respectful, in my opinion. Especially considering how debilitating this can be, plus isolating, plus poverty stricken cause you're not working so much, if at all, plus episodes of grumpiness due to whatever new thing we're trialling...! and so on and so on Good to also not have to feel like one has to tiptoe around.


Sleeping beauty, seeing as you are only following this thread, what do you think has enabled you to shift from living with your mum, to being by yourself. That is a pretty big move. Is it from concentrating on the microbiome, or are you able to pinpoint other things?

 

[Sleeping Beauty]

@ariel It is not as big a move as it sounds. Literally, on the contrary: my mum has come to live with me for the last 5 months and has to go back home soon. I would have to move back to Europe from North America (after 20+ years), so wriggling my way through on my own for a while again seems to be the lesser off two evils. It might have to come to my moving back sooner or later, but part of me think (knows?) that moving to Europe would be the last thing I'll do...

Having said that, I do feel a bit better. I have completely revamped my diet over the last few months. I have gone from an ice cream and chocolate-based diet to more of a PHD -based one, including bone broth and all. I have even tried eating liver a few times! However, I don't think I can keep up with eating that much meat/fish. In addition, I have started using RS and other prebiotics, together with probiotics and other supplements. I do believe that that has helped a lot. Of course it's all a lof of trial and error with hits and misses . Being pampered for the last few months certainly helped a lot, too.

@Hip I just started reading your leaky gut thread and will try to see if I can implement anti-leaky gut measures together with pre- and probiotics. I do think fixing my gut is a fundamentally important step on my way to an improved quality of life.

I very much hope that @Sidereal will reconsider, too! She has been such a big part of this thread! We (I) easily get too emotional over stuff thanks to this disease. I did not intend to offend or even critizise her personally. Sigh. I wanted to send her a personal message but haven't figured out how to...

 

[Asklipia]

Seriously, this has been such a great thread - in over 3,000 posts, I think this is the first time I've seen a ripple in the pond. I've got a huge amount of respect and value for everyone who posts here and who shares their knowledge and experience.

I think there's been a misunderstanding here, and I hope that we might be able to put it behind us and move on. We're too good a group to break up the party. We've always had such a good tone of respectful discussion and mutual support.

Of all the threads on this forum, I think that this is one of the most promising in terms of potentially disease-changing interventions that patients can access themselves. I'd really hate to see this thread damaged, and people lost.

This is really interesting. This thread has been going on for months, and with RESULTS. And I think this is what is happening. Subtly we are not the same sick people as before!!! In the fight against the baddies we can become more aggressive or see slight when there is none.
And the baddies themselves must be trying with all their might to make us stop the reconquest of our microbiome!

Very encouraging! Hang on everybody! We need all hands on deck against the pirates!
Lots of love
Asklipia