Clostridium Butyricum - A Game Changer?

[maddietod]

I tried a quarter tablet of Miyarisan and got very sick. Separately, my doctor had me try colostrum and it trashed my sleep. I react to a lot of supplements, so this isn't terribly surprising, but........be careful!

 

[Basilico]

@Basilico, do you have ME/CFS?

Yes, I have chronic fatigue. I'm Enduin's wife

 

[Sidereal]

Yes, I have chronic fatigue. I'm Enduin's wife

I figured you were. Nice to meet you!

 

[Valentijn]

Yes, I have chronic fatigue. I'm Enduin's wife

Welcome Chronic fatigue is very different from ME/CFS. No one minds which you have, but they really can't be equated, and your answer is unclear as a result.

 

[Violeta]

Welcome Chronic fatigue is very different from ME/CFS. No one minds which you have, but they really can't be equated, and your answer is unclear as a result.

We understand what she's saying, not a problem to most people.

 

[Valentijn]

We understand what she's saying, not a problem to most people.

Could you clarify which it is then? Thanks

 

[Violeta]

Could you clarify which it is then? Thanks

Yeah, she's tired, she doesn't feel good, and she's trying to figure out what's wrong and what to do about it.

 

[alicec]

Let's no go down the track of who has what and who is part of the club and who isn't.

Suffice it to say, and I suspect the reason that @Sidereal asked the question, that from the experiences on the very long resistant starch thread, in general (and it is only in general, there may be many particular exceptions) the sicker people are the more sensitive they seem to be to pre and probiotics.

So maybe @Basilico, you are among the people who can tolerate more of these particular agents, or maybe CB and PS are just not the things your gut needs. Don't abandon the experiment yet but keep in mind that there are many other pre and probiotics that people found helpful.

 

[alicec]

Sorry, forgot to add to the above post something which was part of the main reason for it (my brain is not functioning very well this morning). The other generalisation drawn from the resistant starch thread is that people who don't have ME/CFS seem to be far less sensitive.

 

[Sidereal]

The other generalisation drawn from the resistant starch thread is that people who don't have ME/CFS seem to be far less sensitive.

Right, that seems to be the general trend. I'm always intrigued when someone has no reaction to prebiotics.

It was not my intention to start a fruitless discussion about who has "real" ME, just to clarify with a new member whether she identifies with the CFS symptom cluster or whether she has another illness but is posting here because it's the best source of information about the gut on the internet.

 

[dmholmes]

But then I wonder if for at least some of us the malaise that we get when we take resistant starch is because we are reactivating the virus but don't have enough of something immune system wise to deal with it in the reactivated form.

The resistant starch increased my fatigue big time, and put on some midsection fat.

 

[Violeta]

The resistant starch increased my fatigue big time, and put on some midsection fat.

Yesterday I just accidentally found some articles about the vagus nerve being very sensitive to the microbiome. I remember after trying one of the RS's, feeling a very negative reaction related to the vagus nerve. Although the reaction to bad bacteria is a positive reaction of release of acetylcoline, is it possible that if the vagus nerve is infected, the reaction might not be positive?


http://www.ncbi.nlm.nih.gov/pubmed/24997031

I'm not saying that since the reaction felt negative that there was no positive outcome, but it certainly can explain a lot of my reactions to RS and probiotics. I took almost a year off to try to find a way to negate the negative reaction. I don't know exactly what changed, but I can at least take Garden of Life probiotic now without too much negative aftermath.

RS, still not such a good reaction.

 

[piccirilli]

Actually there are a couple of pretty loud voices elsewhere on the internet (not on phx rising) that say it's better to take probiotics first, if small doses of resistant starch have been causing too many problems.

Whether these people are correct is anybody's guess. They use the same logic that @Basilico does, about seeding the garden with good plants before throwing lots of fertilizer down.

Otherwise the fertilizer may just feed the bad bacteria (weeds). Selectively feeding good bacteria doesn't always happen just by sprinkling fertilizer, in my opinion (I wish it did, for everyone).

Still other people recommend slowly Stairstepping up with tiny bits of probiotics and resistant starch, but pausing after increasing one before considering the next increase of the other.

I'm not able to do a stool test right now to see which probiotics I need most, otherwise that would have been part of my plan too.

The garden metaphor hits the nail on the head! Thank you Basilico and South, for bringing this up. IMHO, this is central to creating a personal road map in healing gut disbyosis. This crucial step defines what treatment approach to take. And there are many different camps here as to the approach and in what order.

IMHO, if there is an overgrowth of weeds, fertilizing OR planting new seeds will do little. Think about it. How much grass will grow in your yard if you attempt to seed it in it's present state of dense dandelions? There is no space for the grass to grow. And even if some blades of grass grew and found a way to survive, they will do nothing for reducing the dandelion spread. Eventually they will have no room to grow and die due to the over abundance of dandelions. Same if you added fertilizer, which at this point will only strengthen and make the dandelions grow faster. At least that has been my experience, based on experimenting with herbals, prebiotics and probitics. So, I've come to the conclusion on this new approach: Make space for the good bacteria by initially eliminate or at least reduce the bad bacteria numbers. Then re-seed (probiotics), then fertilize (prebiotics) in that order. This is key.

The question then becomes how to create space for new microbiome? This is the million dollar question, one that may not be answered easily. Science still cannot identify many of the pathogenic bacteria residing in unhealthy guts. For example, my Ubiome test results showed a whopping 29% of unclassified bacteria at the phylum level. There is not even a general category under which to identify these bacteria. For you SciFi fans, we can refer to it as alien bacteria. Furthermore, if these unclassified bacteria do not exist in healthy people who are mostly carriers of identifiable microbiome, then one can conclude they should not be there. So how does one like myself eliminate bad bacteria if modern science cannot identify them? This only proves there are magnitudes of bacteria out there we have little understanding. And these unknowns have somehow managed to make my garden and perhaps your gut garden as a place to live.

Fortunately there is some good momentum on increasing knowledge on these bugs. Elsewhere, I received excellent information from the Great Plains Lab OAT test. Perhaps limiting since this test cannot check for the thousands of possible pathogenic bacteria species, it's still helpful for more common pathogenic bacteria. Here, I was identified with an overgrowth of bad clostridia (not to be confused with CB in same family), along with fungal indications, which is been the focus of my therapy. It gave me something to work with, factual data. The recommended antibiotic flagyl has been nothing short of godsend. Many of my GI bloating issues, IBS has been eliminated. And I say this under resentment of taking antibiotics due to the damage they have caused in my past history.

But it's only the start, knowing my microbiome is still way off balance. Some of my treatments may or may not improve the 'unclassified' bacteria, and that is my realty. I still suffer from cognitive disorders and adrenal fatigue, which seem to temporarily improve or get worse as I continue to modify and improve my microbiome. However, I do not take such transients seriously, focusing on the bigger picture and dealing with each new layer as the onion unpeels.

Right now I am on stage 2 of reseeding, taking significant doses of many pre/probiotics including Clostridium Butyricum. My thinking here is populate quickly with something good before ugly stuff grows back. I'm not seeing instant miracles, but the slow steady improvement compared to where I was 6 months ago is significant. So far so good.

 

[Violeta]

Yesterday I just accidentally found some articles about the vagus nerve being very sensitive to the microbiome. I remember after trying one of the RS's, feeling a very negative reaction related to the vagus nerve. Although the reaction to bad bacteria is a positive reaction of release of acetylcoline, is it possible that if the vagus nerve is infected, the reaction might not be positive?


http://www.ncbi.nlm.nih.gov/pubmed/24997031

I'm not saying that since the reaction felt negative that there was no positive outcome, but it certainly can explain a lot of my reactions to RS and probiotics. I took almost a year off to try to find a way to negate the negative reaction. I don't know exactly what changed, but I can at least take Garden of Life probiotic now without too much negative aftermath.

RS, still not such a good reaction.

Or maybe if there is something wrong with the Hypothalamus/pituitary/adrenal axis, the immuno modulating response might either not happen or not happen effectively.

"Neuroendocrine pathways, such as the hypothalamo-pituitary-adrenal (HPA) axis and the sympathetic division of the autonomic nervous system (SNS) (9–15), control inflammation as an anti-inflammatory balancing mechanism. The host thereby mobilizes the immunomodulatory resources of the nervous and endocrine systems to regulate inflammation."

 

[JPV]

Last week, after 2 months on Miyarisan, I had maybe 5 good days and a couple of bad days. Pretty much the opposite of how I usually feel. I wouldn't say that I'm 100% better on the CB but maybe floating somewhere between the 30-50% range. So it seems that gut bacteria is a big factor in my case.

I just added another probiotic, a few days ago, to the 2 tablets of Miyarisan that I'm taking.

It contains only 4 Bifidobacterium strains. B. infantis, B. lactis, B. longum and B. bifidum. I've read that a healthy gut should be comprised of 90% Bifidobacterium so it seemed like a logical idea to me. From what I've gleaned on the forum, most PWME/CFS seem to tolerate Bifidobacterium pretty well while certain Lactobacillus strains can cause problems.

This is purely based on a gut feeling (pun intended) that overpopulating with CB may have some short term therapeutic value, fighting off negative pathogens, but may throw things out of balance too. I see it as sending in bombers to work over an enemy's infrastructure before sending in the ground troops.

Some strains of Bifidobacterium are also purported to kill off negative pathogens but it seems to me that CB may be more aggressive in this respect. This might help explain some of the negative reactions. That and/or maybe it increases Acetylcholine too much. Not really 100% sure though, just a theory.

Anyway, so far so good. I'm only taking one of the Bifido complex a day and it seems to compliment the CB so far... at least in my case.

Still avoiding any prebiotics, other than what I get from food. But I do try to drink a lot of water with the probiotics as it's supposed to cut down on stomach acid that may kill the bacteria.

 

[alicec]

I've read that a healthy gut should be comprised of 90% Bifidobacterium

I wouldn't have much confidence in whoever said that. The vast majority of gut bacteria belong to the two phyla Firmicutes and Bacteroidetes which between them account for 80-90 %. The next most abundant are the Actinobacteria, where the Bifidobacteria belong, and the Proteobacteria. These are usually somewhere between 1-5%. Bifidobacteria are usually the most abundant of the Actinobacteria but there are other genera such as Collinsella which are significant too, so Bifidobacteria might constitute something like 1-3%. Of course there is a lot of variability but these are the sorts of figures that are being found in European and Nth American populations.

 

[JPV]

I wouldn't have much confidence in whoever said that.

It might have been due to a misunderstanding on my behalf then. Here's one of the actual quotes and source...

Details on Probiotics (Custom Probiotics Inc.)

As indicated in table 1, Bifidobacteria account for approximately 90% of the total colonic beneficial microflora. Populations of Lactobacilli are several orders of magnitude smaller than Bifidobacteria.

 

[Basilico]

Welcome Chronic fatigue is very different from ME/CFS. No one minds which you have, but they really can't be equated, and your answer is unclear as a result.

From my understanding, ME and CFS are two completely different things, whereas ME is a specific diagnosable disorder and CFS is a label slapped on to everyone who is fatigued/exhausted/feels like garbage for no diagnosable reason. It's essentially a diagnosis given after a bunch of other possible causes have been ruled out.
Additionally, most people who have CFS don't have an official diagnosis, and even if they did, it's essentially meaningless (in terms of deciding on a therapeutical approach) because there can be so many different causes and so many different reactions to therapies that it's not a one-size-fits-all approach in dealing with CFS. Therefore, "having" it or "not having" doesn't really clarify anything.

I personally do have a neurological diagnosis, however, my symptoms are really strange since I have very little in terms of neurological/physical symptoms. The bulk of my issues stem from an overwhelming, paralyzing-at-times fatigue. I don't identify as having CFS, because I don't personally believe that CFS is one specific thing, but I do have chronic fatigue.

I'm curious to know how your suggestions might change depending on whether I say I have CFS or whether I say I don't but that I feel exhausted and crappy all the time for no good reason.

Let's no go down the track of who has what and who is part of the club and who isn't.

Suffice it to say, and I suspect the reason that @Sidereal asked the question, that from the experiences on the very long resistant starch thread, in general (and it is only in general, there may be many particular exceptions) the sicker people are the more sensitive they seem to be to pre and probiotics.

So maybe @Basilico, you are among the people who can tolerate more of these particular agents, or maybe CB and PS are just not the things your gut needs. Don't abandon the experiment yet but keep in mind that there are many other pre and probiotics that people found helpful.

I, in general, seem to be immune to most things, which is extremely confusing. For example, I have a prescription for amphetamine for my fatigue (which I rarely use) and after spontaneously developing low blood pressure I decided to see if taking it could at least temporarily raise my BP so I could not be on the verge of passing out all day. For some reason amphetamine doesn't affect my heart rate or blood pressure, which I continuously monitored. I can also drink tons of coffee and never feel any stimulation, then stop drinking it and not have any withdrawal symptoms. I also seem to not get adrenaline reactions to situations where I should - like moments before a car crash. My car can hit black ice, with me swerving all over, trying to regain control, and I'm cool as a cucumber. This is certainly not normal.

I actually seem to have the opposite problem that most people here have; many of you guys have a negative physical overreaction to small doses of things, while I have little to no reactions to anything. It might seem better, but I'd say it's equally as frustrating for different reasons. Instead of questioning whether a physical reaction is a herx reaction or not, I have no reactions of any kind to guide me, so I never know when to stick with something or give up on it.

The resistant starch increased my fatigue big time, and put on some midsection fat.

I wonder if somehow it's inadvertently feeding the wrong bacteria. This reminds me of some studies I read where scientists swapped the gut flora from obese mice and it caused healthy mice to become obese without any changes in their food/routine. Unless your food/activity levels changed without you realizing, I wonder what else could cause this, since RS supposedly can't contribute calories or affect insulin since it's indigestible.

Yeah, she's tired, she doesn't feel good, and she's trying to figure out what's wrong and what to do about it.

Yup

 

[Basilico]

Yesterday I just accidentally found some articles about the vagus nerve being very sensitive to the microbiome. I remember after trying one of the RS's, feeling a very negative reaction related to the vagus nerve. Although the reaction to bad bacteria is a positive reaction of release of acetylcoline, is it possible that if the vagus nerve is infected, the reaction might not be positive?


http://www.ncbi.nlm.nih.gov/pubmed/24997031

This is really interesting, I will check this out. My husband was told by his endocrinologist and cardiologist that some of his symptoms were likely caused by his vagal nerve malfunctioning after they ruled out everything else, and also knowing that he does have a vagus response when his skin is pierced (he must have blood drawn lying down to prevent a vagus nerve reaction).

He also has IBS-D, chronic fatigue, and a lot of weird reactions to things (for a period of time, we were convinced his problem was histamine intolerance, but he now the only histamine containing/producing food he can't tolerate is yogurt, but it is likely due to the lactobacillus, not the histamine. All these things must be connected somehow, perhaps this is a link.

 

[Violeta]

From my understanding, ME and CFS are two completely different things, whereas ME is a specific diagnosable disorder and CFS is a label slapped on to everyone who is fatigued/exhausted/feels like garbage for no diagnosable reason. It's essentially a diagnosis given after a bunch of other possible causes have been ruled out.
Additionally, most people who have CFS don't have an official diagnosis, and even if they did, it's essentially meaningless (in terms of deciding on a therapeutical approach) because there can be so many different causes and so many different reactions to therapies that it's not a one-size-fits-all approach in dealing with CFS. Therefore, "having" it or "not having" doesn't really clarify anything.

I personally do have a neurological diagnosis, however, my symptoms are really strange since I have very little in terms of neurological/physical symptoms. The bulk of my issues stem from an overwhelming, paralyzing-at-times fatigue. I don't identify as having CFS, because I don't personally believe that CFS is one specific thing, but I do have chronic fatigue.

I'm curious to know how your suggestions might change depending on whether I say I have CFS or whether I say I don't but that I feel exhausted and crappy all the time for no good reason.



I, in general, seem to be immune to most things, which is extremely confusing. For example, I have a prescription for amphetamine for my fatigue (which I rarely use) and after spontaneously developing low blood pressure I decided to see if taking it could at least temporarily raise my BP so I could not be on the verge of passing out all day. For some reason amphetamine doesn't affect my heart rate or blood pressure, which I continuously monitored. I can also drink tons of coffee and never feel any stimulation, then stop drinking it and not have any withdrawal symptoms. I also seem to not get adrenaline reactions to situations where I should - like moments before a car crash. My car can hit black ice, with me swerving all over, trying to regain control, and I'm cool as a cucumber. This is certainly not normal.

I actually seem to have the opposite problem that most people here have; many of you guys have a negative physical overreaction to small doses of things, while I have little to no reactions to anything. It might seem better, but I'd say it's equally as frustrating for different reasons. Instead of questioning whether a physical reaction is a herx reaction or not, I have no reactions of any kind to guide me, so I never know when to stick with something or give up on it.



I wonder if somehow it's inadvertently feeding the wrong bacteria. This reminds me of some studies I read where scientists swapped the gut flora from obese mice and it caused healthy mice to become obese without any changes in their food/routine. Unless your food/activity levels changed without you realizing, I wonder what else could cause this, since RS supposedly can't contribute calories or affect insulin since it's indigestible.



Yup

This is an amazing problem. Could you be one of a kind? It sounds like a HPA axis + vagus nerve issue, and so does your husband's, but with some opposite symptoms. I think it would be a good topic for a new thread.

Do you remember your husband and you simultaneously having a flu or possibly an exposure to a pesticide? Maybe moving into a new house or getting a new carpet?

Do you have any symptoms of vagus nerve innervation (I don't know how else to say it) such as gastroparesis?