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

[adreno]

I have no problems with high doses of probiotic like Ultra Jarro-Dophilus, which has 50 billion organisms per capsule. I have taken up to 4 of these capsules in one go. Probiotics typically have around 5 billion organisms per capsule.

You don't have PEM, you don't have OI, (I read this in other threads) and you tolerate huge doses of Lactobacillus. It makes me wonder if we even suffer the same disease. At least I would suspect our microbiome to be vastly different, so you may not have the same effect from CB that I and others have.

 

[Sidereal]

You don't have PEM, you don't have OI, (I read this in other threads) and you tolerate huge doses of Lactobacillus. It makes me wonder if we even suffer the same disease. At least I would suspect our microbiome to be vastly different, so you may not have the same effect from CB that I and others have.

According to @Hip's anxiety thread I've been following, he is able to tolerate enormous doses of turmeric, NAG and flaxseed oil which again makes me wonder about the ME/CFS diagnosis.

 

[adreno]

I feel the same way Adreno. This thread contains an enormous amount of important information. It feels odd to just abandon it. It's impossible to summarise anyway.

No doubt this has been the most important and informative thread on the board for me.

I almost stopped following PR for many months prior to Ripleys post, because I wasn't learning anything that got me anywhere. I was sort of resigned to not improving any further.

This really was a paradigm change for me, although I, like you, were quite sceptical in the beginning, especially since I didn't have any obvious GI problems.

 

[anne_likes_red]

My Miyarisan arrived yesterday (a knock on the door at 6.45 am!) ...just 3 days since it left Japan. Our customs is sometimes iffy about probiotics so I feel lucky this time.

I took 1 (10mg) tablet yesterday morning and last evening I noticed some mild gut discomfort (not lasting long) and also some of the faint buzzing sensation (on the left side) ...same as I experienced with both AOR and high dose potato starch.
I realise I'm probably in a better position to post anything potentially useful after I've been taking it a while longer...
Anne.

 

[Sasha]

Can't wait for mine to turn up!

 

[Vegas]

What symptom improvements did you get from this Miyarisan, Vegas, and how long did they take to manifest? Days, weeks, or months? Perhaps it's hard for you to say at this stage, but did you notice further improvements accruing over time, or are the original improvements just holding steady?

Miyarasian flushes out the system, but too much can produce the opposite effect. Matter of days. Symptom improvement: Energy coming up, much less achy, very anti-inflammatory, diminishing reaction to certain foods.....that is provided I keep at 1 q.d. Haven't taken long enough to provide perspective about long-term.

Any specific ones that you think may have significance for ME/CFS?

indolepropionamide.

Essentially, what I think may have happened is collapse of a functional microbial metabolic network, which may include key members as represented by certain functional roles in rhizosphere communities. These organisms are actually butyrate metabolizers. I'm betting they are disproportionately represented by commensal proteobacterial species, from which many pathological sulfur/sulfate reducing bacteria evolved. So while many functional roles are carried out by these pathogens, a number of other key physiological roles are not carried out.

Some of those things you mention as HDAC inhibitors are actually plant compounds that play very specific roles in stimulating soil communities. They in turn regulate and support microbial life that of course lives in symbiosis with the host. The parts to the equation thus include the components that promote this soil community or it's marine equivalent. This includes the availability of exopolysaccharides (mucillage...a.k.a.all those things that are promoted for intestinal permeability) which is critical to this bacterial community; flavonoids for root growth (like you mentioned curcumin), betaine, inorganic minerals, etc. These organisms also participate in the regulation of nitrogen, and the reduction of hydrogen sulfide, that inhibits the oxidation of butyrate at the colonocytes. There are many, many parts to this, and I recognize that this is both non-conventional and theoretical.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2858081/

 

[Sasha]

Just went back ten pages to get a rough headcount of who has taken Miyarisin/C. butyricum, and I counted eight people: Adreno, anne_likes_red, Sidereal, Asklipia, Vegas, Rand56, JPV, nandixon, whodathunkit, Sleeping Beauty...

And three more about to try it: me, Hip, Gondwanaland Sushi...

Don't know if I've left anybody out.

[Edit: have added people in mentioned later on this thread - ten have tried it, four planning to.]

 

[Vegas]

@Vegas and other probiotic gurus:

I am about 150 posts behind on this thread but have a very important question that I need some urgent feedback on-

Is Bifido Infantis and/or Bifido Longum the best probiotics to take to lower histamine? Would I take just one or both? At present I have stopped taking Prescript Assist and all probiotics due to extreme MCAS reactions after eating.

I would love to hear all opinions on this and thank you to @Sidereal for all your help with this!

I would operate under the assumption that your exaggerated histamine response is precipitated by a stimulus and that stimulus is lipopolysaccharide, with the foods you are eating having an effect in amplifying this histamine response in the mast cells, macrophages, etc. You have likely decimated the population of organisms that carry out critical roles in modifying your response to this endotoxin, both through the production "counter-regulatory" immune cells, the availablity of similarly structured lipids which occupy those sensors which precipitate such a dramatic response, and the via the decarboxylation of histidine. I think this is most readily achieved by using ABX that broadly target gram-negative organisms, but I believe Sidereal indicated that you had not taken these.

I'm not so sure I would take Bifidobacteria if, in fact, the mechanism I think is at play, but I have to admit that I haven't dealt with such a problem, so I don't know how much help I can be.

What are the worst foods and what is tolerable?

 

[Sidereal]

I think this is most readily achieved by using ABX that broadly target gram-negative organisms, but I believe Sidereal indicated that you had not taken these.

Ginger took Levaquin some time ago.

 

[Gondwanaland]

some of the faint buzzing sensation (on the left side) ...same as I experienced with both AOR and high dose potato starch.

Anne, have you posted your experience with AOR? I have ordered it from iHerb as a consolation prize... iHerb deliveries never fail... but I am scared to try it.

 

[anne_likes_red]

@Gondwanaland - I didn't have any negative reaction but I wasn't sure enough about all of the ingredients to know if I ought to be using it every day. I ordered several jars from iherb and used them over the course of about a year.....alternating with Prescript Assist.
I did get the subtle buzzing sensation when I took them and presumed that to be the C Butyricum. I honestly didn't use it regularly enough to assess it's effect beyond that. It's more complicated using multi strain probiotics I guess.

I'm so sorry you're not finding it easy to get Miyarisan.
I'm still pinching myself over the fact mine arrived without issue.

 

[Gondwanaland]

I didn't have any negative reaction but I wasn't sure enough about all of the ingredients to know if I ought to be using it every day. I ordered several jars from iherb and used them over the course of about a year.....alternating with Prescript Assist.

I am considering to open the capsule and pouring like 1/4 of it into an empty acp to start on the safe side. Do you think it would be necessary? Apparently not, since you didn't have noticeable issues... I am durious to know if you find the Miyari much different...

 

[Hip]

You don't have PEM, you don't have OI, (I read this in other threads) and you tolerate huge doses of Lactobacillus. It makes me wonder if we even suffer the same disease.

I have both PEM and OI (I have POTS to be precise — I get around a 40 point increase in heart rate on standing).

I am not sure why tolerating lots of Lactobacillus has any significance. Lots of ME/CFS patients are not able to tolerate probiotics or prebiotics at all; but other patients have no problem. I had very severe IBS-D at the time, and Lactobacillus / Bifidobacterium are useful for IBS.

Jarro-Dophilus and other lactobacillus trash is nothing compared to the potency of C. butyricum so please be careful.

It will be interesting to see how Clostridium butyricum affects anxiety levels (though my anxiety is well controlled these days). Probiotics, and especially prebiotics, were one of the first useful treatments I found for anxiety, and I continue to take both.

According to @Hip's anxiety thread I've been following, he is able to tolerate enormous doses of turmeric, NAG and flaxseed oil which again makes me wonder about the ME/CFS diagnosis.

Enormous? The doses of turmeric and NAG and I take are quite low; I take about a fifth of the NAG dose recommended for multiple sclerosis.

But even if the doses were high, how would that indicate that someone may not have ME/CFS?

 

[whodathunkit]

Just went back ten pages to get a rough headcount of who has taken Miyarisin/C. butyricum, and I counted eight people: Adreno, anne_likes_red, Sidereal, Asklipia, Vegas, Rand56, JPV, nandixon...

And three more about to try it: me, Hip, Gondwanaland...

Don't know if I've left anybody out.

I've been on it for a couple of months. It's hard to say what benefits I've experienced specifically from that, though, because I'm using shotgun approach (trying lots of stuff at same time). I will say I did not notice significant improvement from Miyarisan over the relatively dramatic improvement I experienced from RS, Prescript Assist, AOR, lots of bifido strains, etc., in the beginning of my gut journey. I got quite a big boost in stamina and exercise tolerance in the beginning. Worth noting is that I was doing 3x/day AOR, which has the c.butyricum in it. I slowed down with AOR because someone said one of the other strains in it gave them some gum problems. I take it a couple times per week now.

Currently I'm not doing so well, but I attribute this downswing to Sanum and some herbs I'm doing to address biofilms, parasites,candida, and fibroids. "Not doing so well" = mood is quite black, I'm tired, semi-unmotivated, and having to really work at it to keep perspective (i.e., keep hold of the thought that the blackness is not necessarily reality but my own skewed perception). It's difficult since I've been to this @#$%!! pit so very many times in my life and I hate coming back here. I'm also trying some things to help detox and support the liver so hopefully it won't get any worse than this. From other's comments (@jepps, @Asklipia, etc.) this seems pretty common with Sanum and biofilm/parasite cleansing, and I'm hoping this extremely shitty mood means my bad critters are dying. Going to try to tough it out through a whole three months of Sanum and finish off the bottles of my tinctures and potions. Timing-wise it should all finish off together. If mood or physical symptoms don't get any worse I should be able to muddle through. If they do get worse I'll have to reevaluate in a hurry.

I am scared to try [AOR]

Izzy, I like AOR. A portion of one or at most one per day probably won't hurt. Try about a quarter and see what happens.

 

[Sidereal]

Enormous? The doses of turmeric and NAG and I take are quite low; I take about a fifth of the NAG dose recommended for multiple sclerosis.

But even if the doses were high, how would that indicate that someone may not have ME/CFS?

ME/CFS is unlike MS or any other disease so what they can tolerate has no relevance to our situation. It has been the experience on this thread over 18 months that people with ME/CFS tend to be uniquely reactive to prebiotic substances, having to open capsules and take tiny doses etc. Some here can't tolerate even a few mg of these substrates without huge systemic reactions. I can't summarise 150+ pages but that's the gist of it.

 

[Gingergrrl]

I would operate under the assumption that your exaggerated histamine response is precipitated by a stimulus and that stimulus is lipopolysaccharide, with the foods you are eating having an effect in amplifying this histamine response in the mast cells, macrophages, etc. You have likely decimated the population of organisms that carry out critical roles in modifying your response to this endotoxin, both through the production "counter-regulatory" immune cells, the availablity of similarly structured lipids which occupy those sensors which precipitate such a dramatic response, and the via the decarboxylation of histidine. I think this is most readily achieved by using ABX that broadly target gram-negative organisms, but I believe Sidereal indicated that you had not taken these.

I'm not so sure I would take Bifidobacteria if, in fact, the mechanism I think is at play, but I have to admit that I haven't dealt with such a problem, so I don't know how much help I can be.

What are the worst foods and what is tolerable?

@Vegas Thank you for your detailed response (a lot of which is over my head!) I bolded my main question which is why would you suggest that I do not take the Bifido Infantis probiotic? I keep reading articles from various "experts" who say that it is the single best probiotic to lower histamine. Can you explain (in dumbed-down language) why it could be bad for me?

Right now I am reacting to all food and it seems that only plain chicken and rice are okay. I had been having Stage 2 anaphylactic reactions and am taking four vials of Gastochrom before eating (plus daily Cortef, Zyrtec, Benadryl, Zantac, Daosin & Quercetin.) Today I added back in plain apple without the skin with the chicken & rice and so far I am okay.

Prior to two weeks ago I could eat any food on earth and this whole thing started about a month ago with a severe reaction to a yellow food dye (Tartrazine) which almost sent me to the ER. I also had significant mold exposure at home through our A/C system but did not find out until too late. Am not living there at present but will spare you that whole story.

Ginger took Levaquin some time ago.

@Sidereal is correct and in March/April 2010 I took a full 7 day course of Levaquin (500 mg pills) which was the first nail in my coffin. I have not taken any other antibiotics since 2010. But as a child I had chronic tonsilitis and was on antibiotics non-stop for most of my childhood (although not Levaquin or anything as toxic.)

 

[whodathunkit]

My Miyarisan arrived yesterday (a knock on the door at 6.45 am!) ...just 3 days since it left Japan. Our customs is sometimes iffy about probiotics so I feel lucky this time.

Maybe they couldn't read the bottle so didn't know what it means. And they were entertained/distracted by the farty guy on the label.

 

[Hip]

Essentially, what I think may have happened is collapse of a functional microbial metabolic network, which may include key members as represented by certain functional roles in rhizosphere communities. These organisms are actually butyrate metabolizers. I'm betting they are disproportionately represented by commensal proteobacterial species, from which many pathological sulfur/sulfate reducing bacteria evolved. So while many functional roles are carried out by these pathogens, a number of other key physiological roles are not carried out.

So if I understand you right, you think that the Clostridium butyricum bacteria may be disrupting the metabolic pathways of the whole bacterial ecosystem in the gut, leading to beneficial results.

 

[anne_likes_red]

Maybe they couldn't read the bottle so didn't know what it means. And they were entertained by the farty guy on the label.

Haha they probably wanted to see who opened the door.....and the obscenely early delivery was to make sure they'd catch us at home.

 

[Hip]

ME/CFS is unlike MS or any other disease so what they can tolerate has no relevance to our situation. It has been the experience on this thread over 18 months that people with ME/CFS tend to be uniquely reactive to prebiotic substances, having to open capsules and take tiny doses etc. Some here can't tolerate even a few mg of these substrates without huge systemic reactions. I can't summarise 150+ pages but that's the gist of it.

N-acetyl-glucosamine is not actually a prebiotic.

I am aware that some ME/CFS patients are very sensitive to prebiotics. However, others are not sensitive. Why that is, I am not sure. Even in my worst semi-bedbound phase, I had no problems with prebiotics.

Perhaps this might be a good subject for a poll, for those who have had a digestive stool analysis and so know which bacteria they have in their gut. The poll could list the standard gut bacteria, and those who find prebiotics problematic could indicate their gut bacteria in the poll.

I have read some suggestions that Klebsiella can feed on prebiotics.