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To understand your IBS, understand the human microbiome

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#1 acureisoutthere

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Posted 21 August 2018 - 09:40 AM

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Hi,

 

Many people come to this site to try to understand why they have IBS, whether it be IBS-D, IBS-C, or IBS-alternating.

 

I first learned about the microbiome around five years ago.  The more I read, the more I realized that this was very important and that it was connected with my IBS-D symptoms.  So, I began to learn everything I could possibly learn about it.  Over time, I found more and more websites with information.  I will share these websites below.

 

I especially like the Pubmed website when I am doing a search fro a topic I am interested in.  I have two, full file drawers of articles, or research reports, on the microbiome and on FMTs.  There is no question that there is a connection between IBS and the microbiome.

 

I hope these links are helpful in your efforts to better understand your IBS.

 

I encourage everyone to learn why products like emulsifiers, preservatives, PPIs, NSAIDS, statins, trehalose, glyphosate added sugars, and others, might be wise to avoid.  Follow the research.  Ask questions. Continue to examine your life and ask, "Is this product or additive harmful to my microbiome ?"    (and look for research)

 

best wishes,

acure

 

in random order ;

 

https://news.google....l=US&ceid=US:en

 

https://www.huffingt...opic/microbiome

 

https://search.medsc...&plr=all&page=1

 

https://www.scienced...me&zone=qSearch

 

https://doaj.org/sea...m":0,"size":10}

 

https://www.ncbi.nlm...term=microbiome

 

https://vsearch.nlm....uery=microbiome

 

https://www.ncbi.nlm...term=microbiome

 

https://www.biomedce...uery=microbiome

 

https://www.medicaln...trointestinal/1

 

https://www.ncbi.nlm...uman microbiome

 

https://scholar.goog...uman microbiome

 

https://medicalxpres...arch=microbiome

http://www.gutmicrob...gut-microbiota/

 

https://www.reddit.com/r/Microbiome/

 

http://journals.plos...ls=PLoSMedicine

 

 

http://www.translati...microbiome.org/

 

https://www.medicaln...=microbiome&p=1

https://www.nature.c...ects/microbiome

 

https://www.news-med...ome&t=all&fsb=1

 

https://www.ncbi.nlm...term=microbiome

 

https://microbiomedigest.com/

 

https://paper.li/f-1...86272#/!science

 

https://hmpdacc.org/...ublications.php

 

https://www.nytimes....ights.html?_r=0

 

https://microbiomejo...al.com/articles

 

https://microbiomejo...al.com/articles

 

https://www.plos.org/microbiome

 

https://www.cbsnews....h/?q=microbiome

 

https://www.fda.gov/...s/ucm079048.htm

 

 

Some excellent books I also recommend :

 

"I contain Multitudes" by Ed Yong

 

"Missing Microbes"  by Dr. Martin Blaser

 

"Dirt is Good" by Dr. Jack Gilbert and Dr. Rob Knight

 

"10% Human" by Alanna Collen

 

 

 

Some closing thoughts ;

 

The oral microbiome influences the gut microbiome, so it is worth asking yourself if you are doing the right thing for your oral microbiome.

 

Please, consider paying this forward, by helping others to learn about the microbiome. Perhaps you know of someone with cancer, or one of the many other diseases that are connected with damage to the microbiome (besides IBS)  ?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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#2 celestin

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Posted 21 August 2018 - 10:54 AM

That title: "To understand your IBS, understand the human microbiome" is not correct.
Understanding the microbiome can sometimes help -to some extent- to understand IBS.



#3 acureisoutthere

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Posted 22 August 2018 - 08:03 AM

I suspect that quite a few people that come to this site looking for help, support, and encouragement with their IBS symptoms that they have never heard of the microbiome.  With that in mind, I have decided it might be helpful to post links to some Youtube videos that will give an introduction to the microbiome.

 

I do hope that this helps viewers to realize how important the microbiome is to our health.  I also hope that these videos encourage viewers to learn more and more about the microbiome.

 

acure

 

 

 

https://www.youtube.com/watch?v=e4Z0rjdh55Y


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#4 acureisoutthere

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Posted 22 August 2018 - 08:04 AM

Here's another video that I wanted to share;

 


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#5 annie7

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Posted 22 August 2018 - 08:11 AM

thanks for posting all of this, acureisoutthere!   smile.png   this is very helpful informtation.  appreciate it! 


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these are just my own thoughts. for expert medical advice please contact a health care professional.


#6 acureisoutthere

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Posted 26 October 2018 - 07:10 PM

FYI for those interested in FMT's ;

 

"The Fecal Transplant Guidebook"  by Sky Curtis.  The author makes the statement that it often takes numerous FMTs to be successful.  Perhaps, this is why some people have not had positive results, while others have ?

 

It is also worth investigating :  ThePowerofPoop  website.


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#7 acureisoutthere

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Posted 28 December 2018 - 07:54 PM

I just learned that the Taymount Clinic now has a clinic in Canada.  The FMTs performed are the same protocol as the one in the UK.  It operates under their guidance, testing, etc.


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#8 MaximilianKohler

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Posted 29 December 2018 - 06:18 AM

Definitely agree with this general notion, but I strongly object to some of the references, such as "Dirt is Good" by Dr. Jack Gilbert and Dr. Rob Knight. This is why.


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What I've found to be effective: http://www.ibsgroup....working-for-me/

 

Starting guide to probiotics: http://HumanMicrobio...Probiotic-Guide

 

FMT is the ultimate cure if you can find someone in perfect health: http://www.ibsgroup....-ibs-d-its-gone - http://HumanMicrobiome.info/FMT

 

 

 


#9 acureisoutthere

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Posted 29 December 2018 - 02:47 PM

Hello Max,

Nice to hear from you.  I followed your link. Thank you.  It is nice to find someone that follows research and I appreciate your analysis.

Kudos !


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#10 onyx

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Posted 16 July 2019 - 09:24 PM

I appreciate the resources which were posted here.  However I am not a microbiologist and I doubt I will ever understand my own microbiome. 

 

I just want to know what to take to treat the symptoms which have ruined my life.  I hope that the research community will one day consolidate their research findings into a succinct set of recommendations which are actually practical to implement.



#11 MaximilianKohler

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Posted 17 July 2019 - 03:00 AM

I appreciate the resources which were posted here.  However I am not a microbiologist and I doubt I will ever understand my own microbiome. 

 

I just want to know what to take to treat the symptoms which have ruined my life.  I hope that the research community will one day consolidate their research findings into a succinct set of recommendations which are actually practical to implement.

Currently it seems that FMT (fecal microbiota transplant) is the only near-complete way to restore the gut microbiome. The problem is finding high enough quality donors. The microbioma.org project is working on that.


What I've found to be effective: http://www.ibsgroup....working-for-me/

 

Starting guide to probiotics: http://HumanMicrobio...Probiotic-Guide

 

FMT is the ultimate cure if you can find someone in perfect health: http://www.ibsgroup....-ibs-d-its-gone - http://HumanMicrobiome.info/FMT

 

 

 


#12 onyx

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Posted 17 July 2019 - 08:39 PM

Currently it seems that FMT (fecal microbiota transplant) is the only near-complete way to restore the gut microbiome. The problem is finding high enough quality donors. The microbioma.org project is working on that.

 

Thanks for the info.  Looks like a promising therapeutic direction.



#13 acureisoutthere

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Posted 25 October 2019 - 09:29 AM

This article explains how some medications are affecting our microbiomes.  

 

https://www.webmd.co...your-microbiome

 

 

Regretfully, the article did not mention NSAIDS and that they also affect our gut ecosystem.  Furthermore, preservatives in our processed foods have been shown to affect our good, beneficial bacteria. The study was done in Hawaii.

 

Also worth mentioning ;  glyphosate may be playing a role in human gut dysbiosis, as these studies are beginning to suggest :

 

https://www.ncbi.nlm...pubmed/29843725

 

https://www.ncbi.nlm...pubmed/31442459

 

https://www.ncbi.nlm...pubmed/29854581

 

Most of us are being exposed to glyphosate residues.  Yes, more research is needed.  But, with what we already have it seems wise to avoid exposure to Roundup-ready crops/foods.  Why risk further disturbing your gut ecosystem of bacteria ?  (if one has IBS-D it is already disturbed).


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#14 Vaughan G

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Posted 30 October 2019 - 06:55 PM

if anyone is looking to support my FMT Trial/experiment, will answer and report on anything my supporters want to know. in the hope to get real evidence that this treatment works.

expensive treatment but possible hope.

 

https://www.gofundme...cf share-flow-1



#15 MaximilianKohler

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Posted 31 October 2019 - 02:09 AM

if anyone is looking to support my FMT Trial/experiment, will answer and report on anything my supporters want to know. in the hope to get real evidence that this treatment works.

expensive treatment but possible hope.

 

https://www.gofundme...cf share-flow-1

I would neither recommend funding that endeavor, nor undertaking it. FMT clinics are currently severely deficient in their knowledge, methods, and donor quality. See the "FMT" link in my signature.

 

For example, you say they're going to give you antibiotics, which is absolutely not supported by the evidence. It's supported to do more harm than good, if anything.

 

The best option right now is to lobby for better donor quality at clinics and clinical trials, and to use microbioma.org to find your own donor.


What I've found to be effective: http://www.ibsgroup....working-for-me/

 

Starting guide to probiotics: http://HumanMicrobio...Probiotic-Guide

 

FMT is the ultimate cure if you can find someone in perfect health: http://www.ibsgroup....-ibs-d-its-gone - http://HumanMicrobiome.info/FMT

 

 

 


#16 acureisoutthere

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Posted 31 October 2019 - 10:08 AM

I followed your link Vaughan, and then followed more links that were available.  Very interesting reading.  Thank you very much.

 

It would be nice if we could know what kind of success rates that this QLD FMT reports/observes.   Good clinical studies are so important. It's the only way forward to figure out this complex problem, IMHO.

 

"Currently, it seems that FMT (Fecal Microbiome Transplant) is the only near-complete way to restore the microbiome ".     I would have to agree with this statement.

 

The Taymount Clinic is aware of the human microbiome.  The Centre for Digestive Diseases is also.  If these clinics and other doctors seem deficient in knowledge or procedure, then perhaps the best approach is to try to forward them good, relevant information in the hopes of furthering progress and greater understanding.  Many good minds, working together, might just figure out this complex problem. At the very least, is does not hurt to try to be helpful. 

 

I noted in the discussion portion of one of the links that it seems in several cases, when IBS is reversed by FMT, that they often relapse. I can't help but wonder if those patients reverted to a diet/lifestyle that perturbs or disturbs their gut microbiome ?  By this, I mean exposure to emulsifiers, and preservatives in their diet, and also medications or over the counter products that negatively affect the microbiome (such as NSAIDS, or PPI's).  We shouldn't rule out glyphosate exposure as well.

 

We still don't know why pretty much everyone's microbiome is different. Why is this, and is this important ?  What role is played in FMT's ? 

 

Max, you report that antibiotics are "definetely not supported by the evidence".  Would you mind sharing some links please ?

 

I continue to hope for more studies concerning IBS. 


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#17 MaximilianKohler

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Posted 31 October 2019 - 10:39 AM

 

in several cases, when IBS is reversed by FMT, that they often relapse

I've always eaten a whole foods diet, yet with my FMTs from 9 different donors, most of the benefits have not stuck around. Three main causes I think:

1. Low quality donors are less likely to transfer eubiotic, hardy communities.

2. Not enough FMTs done with high quality donors.

3. Perhaps the mucosa will need to be cleared: https://archive.ph/1x1Ga

 

 

We still don't know why pretty much everyone's microbiome is different. Why is this, and is this important ?  What role is played in FMT's ?

Here are some clues: https://archive.md/eCyB9

 

 

 

Max, you report that antibiotics are "definetely not supported by the evidence".  Would you mind sharing some links please ?

See the FMT link in my signature.

 

 

perhaps the best approach is to try to forward them good, relevant information

I have done this. I created http://HumanMicrobiome.info for this purpose, and have emailed hundreds of doctors and researchers in regards to FMT: https://archive.ph/2Y4ol


What I've found to be effective: http://www.ibsgroup....working-for-me/

 

Starting guide to probiotics: http://HumanMicrobio...Probiotic-Guide

 

FMT is the ultimate cure if you can find someone in perfect health: http://www.ibsgroup....-ibs-d-its-gone - http://HumanMicrobiome.info/FMT

 

 

 


#18 acureisoutthere

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Posted 31 October 2019 - 08:54 PM

You have my deepest sympathy in your struggles Max.  I realize that you have worked far harder than almost anyone to try to figure this out.............

 

I agree with your conclusion that literally 'eating dirt' is not a helpful step and certainly has it's risks.  Some researchers do seem to conclude that exposure to dirt, (digging, etc) may have some benefits though. 

 

I can tell from reading your posts and links that you have worked very, very hard at this, constantly reading research and books.  I wish that everyone would put forth the effort to become as informed as they can be about the microbiome.

 

I am puzzled as to why 9 different donors did not resolve your problems.  We know that donors that are related, can sometimes make a better donor (perhaps it is because family members share some of the underlying or basic bacteria families/ groups ?)   As you know though, not all related donors are good donors, for a number of reasons.

 

I still suspect that there is the "right" donor for each person (at least for reversing a challenging disease like IBS-D).  The only person I know of that might have data on this would be Dr. Rob Knight, with the Human Microbiome Project.  One could look to see if he has published anything about this in the last few years.

 

I also noted something interesting in one of the links and or sub-links (forget which one it was)  :  a comment that raw spinach had something like 600 species of bacteria on it.  I find this particularly interesting.  I read many years ago that fresh produce had good, helpful bacteria on it.   I speculate that this is how our bodies established good, helpful species of bacteria in our microbiomes over the millennia.  But, does this work when the digestive tract is in dysbosis ?  I picture the gut microbiome of a patient with IBS-D as being 'flipped' into an unhealthy state (speculation and could be wrong) .   That the balances are disrupted, bacteria species are lost, and not even mentioning what has happened to the viruses, archaea, fungi, and others that make up this ecosystem. It's almost like we have doused a rain forest with Rondup or some other herbicide and are now trying to reestablish the rain forest (this may be a poor analogy).  But, please bear with me, does this mean that we have to establish certain species first, in order for other species to take up residence a little later, for some IBS patients ?  I think I read once that the infant microbiome is established a little bit like this (but my memory is getting worse, the older I get).

 

I agree that antibiotics wreck havoc on this ecosystem.  I guess I was hoping to see research on the effectiveness of using antibiotics prior to an FMT, or not using antibiotics prior to an FMT.  Perhaps I missed it ?  Or perhaps it has never been published.


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#19 MaximilianKohler

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Posted 31 October 2019 - 10:25 PM

 

I am puzzled as to why 9 different donors did not resolve your problems

I believe in my detailed report https://archive.fo/Ew3C2 I stated that most of them were low quality and thus no more effective than a mild probiotic. And the more effective ones did not stick around to do more than 1 FMT.

 

 

I still suspect that there is the "right" donor for each person (at least for reversing a challenging disease like IBS-D).  The only person I know of that might have data on this would be Dr. Rob Knight, with the Human Microbiome Project.  One could look to see if he has published anything about this in the last few years.

The only way there's going to be useful data on that is via a clinical trial. It is not useful to discuss donor matching until basic donor quality standards have been met and tested: https://archive.fo/2...2291.10-2291.11

 

I have emailed Rob Knight and UCSD about FMT and they didn't seem interested.

 

 

a comment that raw spinach had something like 600 species of bacteria on it

There's a major difference between environmental vs host-native microbes. Environmental are in no way a replacement. I've eaten plenty of raw food throughout my life and it has had very little impact. In no way comparable to FMT.

 

 

I speculate that this is how our bodies established good, helpful species of bacteria in our microbiomes over the millennia.

No, see: https://archive.ph/eCyB9

 

Much of the microbiome is inherited.

 

 

I agree that antibiotics wreck havoc on this ecosystem.  I guess I was hoping to see research on the effectiveness of using antibiotics prior to an FMT, or not using antibiotics prior to an FMT.  Perhaps I missed it ?

Yes, it's here: http://HumanMicrobio...e-the-procedure


What I've found to be effective: http://www.ibsgroup....working-for-me/

 

Starting guide to probiotics: http://HumanMicrobio...Probiotic-Guide

 

FMT is the ultimate cure if you can find someone in perfect health: http://www.ibsgroup....-ibs-d-its-gone - http://HumanMicrobiome.info/FMT

 

 

 


#20 tinhearts

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Posted 25 February 2020 - 10:39 AM

Thank you acureisoutthere's for the information . I did learn some last night from searching them. But the one lady said once they are gone we cant replace them so are we doomed or did I miss something please.
Sincerely

I went through a study at the Mayo Clinic 30 yrs ago and found out Im allergic to almost everything added. I have to eat pure foods not even organic additives such as gums are so bad . So I have to make everything from scratch. No preservatives or additives. I cant even smell them cooking so my husband cant eat them either or Ill have a reaction





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