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FECAL TRANSPLANTS: A Guide

Fecal Transplant could help Multiple sclerosis.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0137429

Dr borody treated a man with MS for constipation with a fecal transplant and afterwards his MS improved, which suggested the FMT help or cured it. So borody may have done it again!! I hope more studies will be done to prove it.
http://freakonomics.com/2011/03/04/freakonomics-radio-the-power-of-poop/
Just one more interesting thing about this study on MS microbiome:

These taxa comprised primarily of clostridial species belonging to Clostridia clusters XIVa and IV and Bacteroidetes. The phylogenetic tree analysis revealed that none of the clostridial species that were significantly reduced in the gut microbiota of patients with MS overlapped with other spore-forming clostridial species capable of inducing colonic regulatory T cells (Treg), which prevent autoimmunity and allergies; this suggests that many of the clostridial species associated with MS might be distinct from those broadly associated with autoimmune conditions
Clostridial bacteria also are found lacking diversity in IBD microbiome and at first I was afraid this information would contradict the theory that the bacteria missing in IBD is the first and prime cause of the disease, but it seems the theory still stands and restoring the bacteria with an FMT is likely to cure BOTH conditions as the bacteria missing either in IBD or MS are distinct but have similar sounding names.
 
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Fecal Transplant could help Multiple sclerosis.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0137429

Dr borody treated a man with MS for constipation with a fecal transplant and afterwards his MS improved, which suggested the FMT help or cured it. So borody may have done it again!! I hope more studies will be done to prove it.
http://freakonomics.com/2011/03/04/freakonomics-radio-the-power-of-poop/
Just my 2 cents,
You do have to understand, its not only bacteria that you can replace,
Its also the curent enviroment in the gut that plays a massive part.
I have done the fmt with perfect donors orally, and failed on multiple occasions.

And i always corelate back to the various studies,
2 variables always play apart in the other fmt studies that are succesful...
1)antibiotics - though i disagree with this method as, eradicating the current gut flora, doesnt automatically switch off innflammation...its takes time for inflammation to go down for sure.

2) in the studies, the docs never take them of steroids... they might taper them off slowly... but even at the end of the fmt weeks... they still use minute amounts of steroids ..

In my opinion, i really think the environment plays the biggest factor in allowing the donors flora to take part..

People who often have the constipation side of bowel problems... do not have uncontrollable levels of gut inflammation!
Easier to help them with fmt.. higher success rate.

Lastly, i would like to say, i have seen studies showing, when inflammation is quelled thiugh steroids or any other drugs people may use... if inflammtion goes down, the gut flora reverses very quickly to closely resemble those of control patients.
 
Just my 2 cents,
You do have to understand, its not only bacteria that you can replace,
Its also the curent enviroment in the gut that plays a massive part.
I have done the fmt with perfect donors orally, and failed on multiple occasions.

And i always corelate back to the various studies,
2 variables always play apart in the other fmt studies that are succesful...
1)antibiotics - though i disagree with this method as, eradicating the current gut flora, doesnt automatically switch off innflammation...its takes time for inflammation to go down for sure.

2) in the studies, the docs never take them of steroids... they might taper them off slowly... but even at the end of the fmt weeks... they still use minute amounts of steroids ..

In my opinion, i really think the environment plays the biggest factor in allowing the donors flora to take part..

People who often have the constipation side of bowel problems... do not have uncontrollable levels of gut inflammation!
Easier to help them with fmt.. higher success rate.

Lastly, i would like to say, i have seen studies showing, when inflammation is quelled thiugh steroids or any other drugs people may use... if inflammtion goes down, the gut flora reverses very quickly to closely resemble those of control patients.
You bring up a good point and this is something I'm aware of. without a pill giving the precise amount of bacteria needed, factors like the disease state of the patient will begin to outweigh a DIY protocol and you will not achieve success. Achieving success with an at home DIY Fecal transplant is difficult, can it ever be done successfully? I'm not sure yet but I'm convinced it's difficult at this point.
 
Another company created a Fecal Transplant pill. I assume this is based on the whole flora which his probably freeze dried. It's patent pending so I'm wondering if they will get a patent for it, its doubtful Professor borody own's a similar patent and i recall university of minnesota created a similar full spectrum flora FMT pill, which seemed to be completely terminated there no more evidence anywhere on the net that this is still in the works, I also assume from patent issues, but i don't really know.

http://www.openbiome.org/press-rele...tion-begins-following-successful-dosing-study
 
One thing that plays a critical role is the host immune system. It can act like an herbicide and kill off a good portion of the gut flora, or negatively impact the mucus membrane which provides much of the nutrients to the bacteria. It's the chicken or the egg causality dilemma. We don't know which came first, an imbalance in the bacteria triggering an immune response, or an off-kilter immune system disrupting normal flora.
 
One thing that plays a critical role is the host immune system. It can act like an herbicide and kill off a good portion of the gut flora, or negatively impact the mucus membrane which provides much of the nutrients to the bacteria. It's the chicken or the egg causality dilemma. We don't know which came first, an imbalance in the bacteria triggering an immune response, or an off-kilter immune system disrupting normal flora.
I do not believe is just a coincidence that the bacteria missing in IBD play a large role in regulating inflammatory response. This strongly suggests, the microbiota was damaged and immune system went out of whack, and restoring these bacteia with a Fecal Microbiota Transplant, can reverse/cure IBD. If it were the case that these bacteria that were missing had a complelet unrelated function, then i would consider an alternative theory, and see these missing bacteria as insignificant in explaining IBD.

Another observation to consider is that when people are in remission and inflammation is suppressed with drugs, the reduced diversity in good bacteria doesn't correct itself, which suggests the immune system malfunction isn't the cause of missing bacteria. In other words the immune system hasn't killed them off or pushed them out or whatever.
 
Hi Wildbill - a couple of quick questions that may have been answered already, but I haven't had time to search the whole thread. Does FMT work better in UC or Crohn's where the colon is involved? If disease is limited to the small intestine, would the route of FMT need to be oral vs. via enema? In Crohn's patients that have tested positive for a pathogenic mycobacteria through Aitken's lab, do you think a course of AMAT followed by (or run concurrent with) FMT would be beneficial? Kind of a double whammie - killing the bad bug plus restoring the beneficial bacteria which seems to be impaired in CD.

I seem to recall Dr. Rubin's video from Chicago discussing the gut flora in CD patients being permanently impaired vs. controls and unable to recover from a course of antibiotics. Although I'm on AMAT and have done remarkably well, I think there may be something more needed to rehab the immune system and microbiome. I added LDN which seems to be working since I'm not sick. I know Dr. Chamberlin and Dr. Borody are both in favor of FMT but they use AMAT as well. Have you ever heard either reconcile the two?

I think the biggest issue with both of these is that they're both difficult for the average patient to obtain. GI's won't generally touch AMAT, and FMT has to be done correctly with supervision of a knowledgeable doc and correct donor matter. Did I hear Dr. Borody was working on a pill? So both could be beneficial if done right I believe. Also, do you think in the interim FMT could be done on people with colon disease using fivelac or other probiotic enema instead of fecal matter? Another member here had huge success with that in CD.

All very interesting and exciting. Thanks for the thread! I hope you are well.
 
Irishgal, I will try to answer your questions. I don't consider myself an absolute expert in all these areas but ill try to help.

Does FMT work better in UC or Crohn's where the colon is involved? If disease is limited to the small intestine, would the route of FMT need to be oral vs. via enema? In Crohn's patients that have tested positive for a pathogenic mycobacteria through Aitken's lab, do you think a course of AMAT followed by (or run concurrent with) FMT would be beneficial? Kind of a double whammie - killing the bad bug plus restoring the beneficial bacteria which seems to be impaired in CD.
Studies so far suggest FMT as an enema and in any form is more effective in UC when compared to crohn's. Oral route's seem better for crohn's affecting small intestine, most studys are in the first post of this thread. Borodys experiment with FMt in 5 uc patients usining enemas used antibiotics prior to lower pathogenic bacteria and to encourage new bacteria to take hold better, this study wasn't enough to demonstrate it was more effective then without using antibiotics so really it is unknown whether this would improve FMT efficacy. In my opinion the antibiotic would have to be very precise to target pathogens and leave the good bacteria unharmed to have any benefit, other wise it's probably better not to use them at all so you can possibly preserve some of your own microbes that have been passed down through your family, antibiotics could also cause further damage since we know how important bacteria are for our health now. AMAT has shown efficacy, maybe it would help to use this prior to FMT, But FMT just need's to be available in pill form and most of these questions will be unimportant as we gain more control over how much bacteria and in what ratios a patient will recieve.




I think the biggest issue with both of these is that they're both difficult for the average patient to obtain. GI's won't generally touch AMAT, and FMT has to be done correctly with supervision of a knowledgeable doc and correct donor matter. Did I hear Dr. Borody was working on a pill? So both could be beneficial if done right I believe. Also, do you think in the interim FMT could be done on people with colon disease using fivelac or other probiotic enema instead of fecal matter? Another member here had huge success with that in CD.
I dont think using a store bought probiotic as an enema will have more benefit over consuming it orally, these bacteria need fiber from food anyways to grow and make beneficial compounds so eating it with a meal will have much more impact. Store bought probiotics will definitely not be comparable to a real FMT as the bacteria we need is not available which you probably know already, its only in healthy people's poop at the moment.

All very interesting and exciting. Thanks for the thread! I hope you are well.
Your welcome!
 
I remember this. It's just crazy to think there was a time in the very recent past the FDA didn't care if anyone decided to do a fecal transplant until it was proven to be a valuable medicine curing C. difficile infection in a placebo controlled study, now it's strictly regulated. Those were the days!

The vast majority of FMTs were performed without any oversight or regulation until early 2013, when the Food and Drug Administration (FDA) ruled that stool fell within the definition of a biological product and drug.
http://journals.lww.com/jcge/Fullte...robiota_Transplant__Respice,_Adspice,.16.aspx
 
Potential risks of FMT.

http://www.ncbi.nlm.nih.gov/pubmed/26302500

EDIT: one more note about this, i recall a few months back a women developing obesity after a Fecal transplant which done under professional supervision, they these professionals knowingly chose a donor with obesity, something i personally would never have done even in a DIY FMT. So even some professionals may not want to read all the papers that exist on FMT and take the necessary precautions, the same could be with this reported case too. It's not necessarily FMT that is more dangerous just a lack of education and taking the time to screen donors.
 
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Thanks for the articles wildbill. Wish I could read the pouchitis one! Looks like it's published ahead of print, so hopefully they will at least have an abstract when it's released.
 
AbstractSend to:
World J Gastroenterol. 2015 Oct 14;21(38):10907-14. doi: 10.3748/wjg.v21.i38.10907.

Gastroenterologist perceptions of faecal microbiota transplantation.

Abstract

AIM:
To explore gastroenterologist perceptions towards and experience with faecal microbiota transplantation (FMT).

METHODS:
A questionnaire survey consisting of 17 questions was created to assess gastroenterologists' attitude towards and experience with FMT. This was anonymously distributed in hard copy format amongst attendees at gastroenterology meetings in Australia between October 2013 and April 2014. Basic descriptive statistical analyses were performed.

RESULTS:
Fifty-two clinicians participated. Twenty one percent had previously referred patients for FMT, 8% more than once. Ninety percent would refer patients with Clostridium difficile infection (CDI) for FMT if easily available, 37% for ulcerative colitis, 13% for Crohn's disease and 6% for irritable bowel syndrome. Six percent would not refer any indication, including recurrent CDI. Eighty-six percent would enroll patients in FMT clinical trials. Thirty-seven percent considered the optimal mode of FMT administration transcolonoscopic, 17% nasoduodenal, 13% enema and 8% oral capsule. The greatest concerns regarding FMT were: 42% lack of evidence, 12% infection risk, 10% non infectious adverse effects/lack of safety data, 10% aesthetic, 10% lack of efficacy, 4% disease exacerbation, and 2% inappropriate use; 6% had no concerns. Seventy seven percent believed there is a lack of accessibility while 52% had an interest in learning how to provide FMT. Only 6% offered FMT at their institution.

CONCLUSION:
Despite general enthusiasm, most gastroenterologists have limited experience with, or access to, FMT. The greatest concerns were lack of supportive evidence and safety issues. However a significant proportion would refer indications other than CDI for FMT despite insufficient evidence. These data provide guidance on where education and training are required.
 

Lady Organic

Moderator
Staff member
wow a synthetic pill that would be awesome. It is news such as these that keep me enthousiastic, thrilled, hopeful and confident there is going to be a friendly solution to our problems in the near future. I so wish to give a kick in the gut to these %#@#$%% meds I have to take!!!
 
wow a synthetic pill that would be awesome. It is news such as these that keep me enthousiastic, thrilled, hopeful and confident there is going to be a friendly solution to our problems in the near future. I so wish to give a kick in the gut to these %#@#$%% meds I have to take!!!
A selection of bacteria or in other words, synthetic, would be the safest option. But we still don't know exactly which bacteria we need, most likely clostridia. Open biome is making Fecal transplant pill's on a large scale that contain the full spectrum of human bacteria. I'm hoping someone uses these to treat IBD, i think there is study underway for crohn's using FMT pills but dont have the link handy though, ill look for it.
http://www.openbiome.org/press-rele...tion-begins-following-successful-dosing-study
 
Just had a follow up scope this week. I am 1.5 years removed from an FMT done as part of a clinical trial. Couple of disclaimers- 1) I've had a mild course throughout my crohns journey 2) at the time of the FMT I was not doing too badly.

Scope grossly was normal- per the GI- "if this were your first time here I'd never know you have IBD." Biopsies are still pending.

Still have to avoid gluten/dairy. Both are in essense immunogenic and, in some ways promote IBS type sxs in those with any gut issues (some more than others.) They still cause a ton of gas, urgency, loud bowel sounds, and stool changes- certainly related to amount ingested.

I don't think I'll ever be able to know whether it was the FMT, havnig a mild course to begin with, having the FMT during relative quiescense, or who knows what. But a normal scope 1.5 years later only on VSL and watching diet- I'll take it.

Do not ask me to claim FMT is a cure. It isn't. I'm not cured. For NOW, I'm healed. I don't doubt this disease will show its ugl face again. I think of FMT as an OPTION. For those with mild colonic disease, dysbiosis symptoms- maybe give it a whirl.

Good luck to all. Hope everyone heals and feels well soon.
 
Just had a follow up scope this week. I am 1.5 years removed from an FMT done as part of a clinical trial. Couple of disclaimers- 1) I've had a mild course throughout my crohns journey 2) at the time of the FMT I was not doing too badly.

Scope grossly was normal- per the GI- "if this were your first time here I'd never know you have IBD." Biopsies are still pending.

Still have to avoid gluten/dairy. Both are in essense immunogenic and, in some ways promote IBS type sxs in those with any gut issues (some more than others.) They still cause a ton of gas, urgency, loud bowel sounds, and stool changes- certainly related to amount ingested.

I don't think I'll ever be able to know whether it was the FMT, havnig a mild course to begin with, having the FMT during relative quiescense, or who knows what. But a normal scope 1.5 years later only on VSL and watching diet- I'll take it.

Do not ask me to claim FMT is a cure. It isn't. I'm not cured. For NOW, I'm healed. I don't doubt this disease will show its ugl face again. I think of FMT as an OPTION. For those with mild colonic disease, dysbiosis symptoms- maybe give it a whirl.

Good luck to all. Hope everyone heals and feels well soon.
Awesome, thanks for sharing.

It is an experimental treatment, so it is too soon to conclude whether it is a cure or not. It's not a simple issue because there are official reports of people being cured already. At this time the treatment must be improved, there are variables to FMT success such as how it is administered, the health of the donor, the diet of the donor, the severity of the patient, the diet of the patient, the amount of stool(bacteria) used, whether it was performed as an enema, nasogastric tube, how many treatments did the patient receive, did they use FMT pills. There are so many question's to be answered still which more research should be able to answer. The main goal here is to restore the good bacteria that is missing by obtaining it from a healthy donor, it's something so new, it's hard to do at the moment but we will get there soon.


How was the Fecal Microbiota Transplant you had administered?

Also have you ever considered that it is not the gluten that increases your symptoms but glyphosate(Roundup) residues on the wheat? or even the yeast used to leaven the bread? anti Saccharomyces cerevisiae antibodies are found in crohn's disease patients which means your immune systems see it as an invader and wants to kill it. I eat alot of homemade wheat products that cause no issues whatsoever, but some brands of wheat do cause issues, gold medal brand whole wheat causes no issues for me.
 
Awesome, thanks for sharing.

It is an experimental treatment, so it is too soon to conclude whether it is a cure or not. It's not a simple issue because there are official reports of people being cured already. At this time the treatment must be improved, there are variables to FMT success such as how it is administered, the health of the donor, the diet of the donor, the severity of the patient, the diet of the patient, the amount of stool(bacteria) used, whether it was performed as an enema, nasogastric tube, how many treatments did the patient receive, did they use FMT pills. There are so many question's to be answered still which more research should be able to answer. The main goal here is to restore the good bacteria that is missing by obtaining it from a healthy donor, it's something so new, it's hard to do at the moment but we will get there soon.


How was the Fecal Microbiota Transplant you had administered?

Also have you ever considered that it is not the gluten that increases your symptoms but glyphosate(Roundup) residues on the wheat? or even the yeast used to leaven the bread? anti Saccharomyces cerevisiae antibodies are found in crohn's disease patients which means your immune systems see it as an invader and wants to kill it. I eat alot of homemade wheat products that cause no issues whatsoever, but some brands of wheat do cause issues, gold medal brand whole wheat causes no issues for me.


FMT was done via colonoscopy. Sprayed from TI through the transverse colon.

Good question about the wheat. It's entirely possible. It's interesting. I'll try to pay closer attention. My autoantibodies have been normal (ASCA/ANCA.)

The FMT was so simple in terms of the trial. Usual colo prep, got the scope. Held it for a few hours. Went home, was at work the next day. It's a low risk option. I don't see it as a "cure" b/c it cannot correct the host defect.

Cure is also a term I'm not a fan of. For me, I care about healing and decreasing risk of complication. I look at big ticket items, not the day to day variability in symptomatolgy. Diet, stress etc… can effect the GI system on a day to day basis even in the "normal" population. We can go crazy over thinking very fart or every bathroom trip. I try not to get caught up in that. I'd lose my sanity.
 
I haven't updated my progress in a while from my DIY Fecal Microbiota Transplant 15 months ago, so I'm letting you all know I ended up gaining 25 lbs total over the course of that time, after being under weight for like 8 years despite having my IBD symptoms largely under control( 1 healthy BM per day, good blood work, no complications). The first 10 lbs were rapidly gained in the first 2 months, then over the next thirteen months I slowly gained 15 more pounds. I'm Still eating about 1700 calories a day so the only way to explain all this weight gain is that I restored some healthy bacteria and I'm now able to extract more calories from the same amount of food.

My other symptoms of IBD have only improved around 10%, so The FMT did not restore the most important bacteria that regulate inflammation, and another course of FMT is needed for that. So I think that is the final extent of my DIY Fecal Transplant results and benefits. At some point I will try another attempt and find a suitable donor, probably a healthy college student with glowing smooth skin, perfect hair, muscular physique, positive ambitious personality,high energy, who is working out at the gym or playing tackle football, basketball or tennis somewhere!! Or finally they will put this bacteria in a pill and I know so deep in my heart and mind, when they perfect this treatment it will be the final cure for IBD. And the damage the many courses of antibiotics(and low fiber diet, vit d deficiency) did to me will finally be reversed.

If I had the education and the means to do it myself, trust me we would have it by now.
 
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(Forgive me if I am repeating, but I have not followed this whole thread)...have you tried VSL#3 or the double strength VSL#3? I take it before bed, one or two. It is expensive.
 

Spooky1

Well-known member
Location
South Northants
Great to hear, Wildbill.
I also agree that it is the answer. I've had two lots of antibiotics lately for dental abscesses. Now having lots of probiotics. It's interesting to hear that you gained a lot of weight, but I understand, and laughed, at the required sort of donor needed.

I tried VSL#3 and my god I was on and off the loo about 50 x pd. Amazing, immuprobio is costly too but is gastro resistant. However if I take about 8 I can cut the loo visits down by half the next day. Only works whilst in the system, and I can't really afford 8 per day. I do make sauerkraut and have some of that each day. It is a benefit as I have very little bloat the next day. So something good about its probiotic properties are helping.
 
Homemade kefir is not expensive, although you have to hunt down the grains to start. Tons of probiotics in it. My experience is that taking the probiotic stuff before bed is essential, and not all of the probiotics work the same for me. My doc said VSL#3 doesn't work for everyone. But if you have a good response to probiotics then it may help. I ran into lots of varieties when I was looking at amazon to buy the VSL#3 that I was not aware of.
 

Spooky1

Well-known member
Location
South Northants
I have tried milk kefir with dire results as dairy is an issue. I used to do water kefir too, but it wasn't as helpful as the sauerkraut and immuprobio. I usually take some immuprobio along with other 50 billion cheaper probiotics and just hope for the best. But one day we will all be given fmt for our ills and then hopefully they won't be our ills and we'll all be blessed with good health. I certainly deserve it after 40 years of Crohns.

I take it VSL#3 works for you? I bought some on ebay fairly cheaply. Must have had bad gut flora for it to have such a clear out effect. Might try them again sometime. I checked with my gp recently about having it on the NHS here in the UK, but it was blacked out, meaning too expensive to prescribe and it's only a supplement. So not pharma enough for them to pay for I think.
 
Yes, VSL#3 works, but other cheaper ones do too. But taking before bed is the key. Kefir works sometimes. I'm very lucky I have a mild case.
 
If I had the education and the means to do it myself, trust me we would have it by now.[/QUOTE]

Hi Wild Bill,

I've not responded to your posts often, but wanted to let you know how much I appreciate your sharing of such valuable information. Glad you are doing so well. I think FMT with the right donor could very well be the answer to IBD. Thanks again.

jayann
 

Lady Organic

Moderator
Staff member
Speaking of the perfect donor (makes me laugh too Spooky1!) in Ontario, a team of doctors are conducting a second trial of FMT with UC patients. They will use the specific donor who had the most success in the first trial and they will also give antibiotics for 14 days prior to the procedure. :''The investigators will also use stool from donor B exclusively for frozen/thawed FMT as this donor was associated with the most success in the previous trial''

https://clinicaltrials.gov/ct2/show/NCT02606032?term=fecal+transplant+ulcerative+colitis&rank=3
 
Latest news on companies developing microbiome based therapies for IBD. Microbiome is a term that refers to all the microorganisms(bacteria,virus fungi,ETC) that live on or in the body,of which the most important communities live in the GI tract. This is all related to fecal microbiota transplants which also attempt to treat the microbiome to influence or cure disease states.

Seres granted Nestlé Health Science commercial rights in global markets outside of the United States and Canada to SER-109 and SER-262 for CDI, and SER-287 and SER-301 for IBD. The U.S. Food and Drug Administration (FDA) has granted SER-109 Orphan Drug, as well as Breakthrough Therapy, designations. In exchange for commercial rights, Nestlé Health Science agreed to provide Seres with an upfront payment of $120 million in cash and a series of contingent payments for development and sales milestones and tiered royalties on sales ranging from the high single digits percentages up to the high teens for all products.

Nestlé Health Science agreed to contribute to certain development efforts, including 33 percent of expenses for potential global Phase 3 studies for SER-287, SER-301 and SER-262.
http://www.cbs8.com/story/30932362/...-clostridium-difficile-and-inflammatory-bowel

https://www.nestlehealthscience.com/newsroom/press-releases/Strategic-collaboration
 
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wildbill_52280 sorry for me asking this maybe even a dumb question but how do you do the fmt? Im just curious to know as this is interesting
 
wildbill_52280 sorry for me asking this maybe even a dumb question but how do you do the fmt? Im just curious to know as this is interesting
You can read the first post in this thread for more information, but in general the procedure requires a stool sample from a healthy person. this is mixed in saline and given to the patient via enema or nasogastric tube or colonoscopy. Still waiting on pill form. The idea is the restore bacteria that have become extinct in the patient intestines, by obtaining it from healthy people.
 
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Spooky1

Well-known member
Location
South Northants
I just wish they'd get a wriggle on with this stuff. I've been waiting as long as the rest of us here and am willing to go for any trials necessary or volunteer. I swear this is the answer to many auto-immunes. Thanks for the info Bill. It still raises my hopes greatly it's just I'm not getting any younger. I can see 30 years down the line as soon as someone presents with an auto-immune they will just cure it with FMT. Unfortunately, I will probably have popped my clogs by then.
 
Not to temper your enthusiasms too much - but I have Sjogren's, Raynaud's, celiac, and possibly SLE, and after 4 FMTs I definitely still have all the conditions.

However, I cured my ankylosing spondylitis with a low starch diet and doxycyline. Dr. Alan Ebringer's research on ankylosing spondylitis, diet, and Klebsiella pneumoniae all seemed to be very accurate and invaluable to me.

edit: I also drank cabbage juice, which is purported to be of assistance in healing intestinal lesions

edit 2: Also, after the FMTs, I was able to eat certain FODMAPs like onions and garlic, which I couldn't tolerate at all before.
 

Spooky1

Well-known member
Location
South Northants
I also have Sjogrens symptoms and my good friend a retired GP also stated she thought I hade it. I'm also a Raynaud's sufferer with Crohn's, iritis and arthritis. But, as ever, I'm always hopeful. I have home made sauerkraut which is cabbage and carrot raw with sea salt and fermented. This gets rid of bloating. I also take a few 50 billion probiotics at night. This is helpful only whilst it is in the system.

Thanks, PPK,
 
I always loved fruit and veg and miss them badly. Actually I would give anything to eat anything and everything.
I wholeheartedly believe much of the suffering in those with IBD/IBS/celiac/etc. is caused by nutrient deficiencies, because our diets are so restricted and they suffer from malabsorption. My quality of life has definitely improved follow my four FMTs, and therefore I recommend FMTs to those suffering from any GI/autoimmune-related conditions. Just make sure you find a healthy donor. If you're rich, you can run tests on both the donor's and your microbiome, and determine which species are in greatest abundance in both of your stools. Then, post-FMT, you can test donor engraftment by running another test on your stool and seeing how many of the donor species took root in your GI tract.

For what it's worth, I found that I tolerated FMTs much better than any probiotics I've taken since I got sick.
 
@9:00 Thanks Rob Knight, but the whole video is great.
https://www.youtube.com/watch?v=M5KlhCKMmK8
Thanks, Wild Bill,

Rob Knight is my hero. Have you taken the Coursera course online? It was put out by the Rob Knight Lab while it was at University of Colorado. It is still available on demand. It's called something like- Exploring your Gut- the Microbiome. I'm sure a Google search will locate it. Fabulous course, can be audited, all, or in part and certificate can be earned.

jayann
 

Spooky1

Well-known member
Location
South Northants
I looked at that course as I love Coursera. Unfortunately when I changed broadband I got limited usage and doing more than one course at a time ate away at my usage. I'm changing to a better supplier on the 11th and will be back doing coursera courses by the dozen.
thanks.
 
Thanks, Wild Bill,

Rob Knight is my hero. Have you taken the Coursera course online? It was put out by the Rob Knight Lab while it was at University of Colorado. It is still available on demand. It's called something like- Exploring your Gut- the Microbiome. I'm sure a Google search will locate it. Fabulous course, can be audited, all, or in part and certificate can be earned.

jayann
I have not taken Rob Knight's coursera course, interested though.
 
Study of Fecal Microbiota Transplant(FMT) Pill in C. difficile patients achieves 96.7% cure rate. The pill SER-109 is a mixture of spores of approximately 50 species of beneficial bacteria made by Seres Therapeutics, that is meant to replace to procedure of getting fecal transplant. Using bacterial spores would guaranty almost 100% safety and reliability compared to using stool from a live donor.

Excerpt:
"This oral microbial preparation that contains a small fraction of the total microbiome works as well as, if not better than, FMT," says Elizabeth Hohmann, MD, of the Massachusetts General Hospital (MGH) Infectious Diseases Division, senior author of the study. "These few key species seem to work in restoring a healthy microbiome, and other, beneficial species not in the capsules return, while harmful bacteria are removed. The product is also designed to be safer than FMT, by eliminating the potential for transmission of pathogens that might be present in donor fecal material."
 
FMT pill used to treat C.difficile is very successful, similar pills are currently being studied to be used for Crohn's and U.C. pills will be safer and easier then a fecal transplant, and may even be more effective at repairing a damaged microbiome.

"This oral microbial preparation that contains a small fraction of the total microbiome works as well as, if not better than, FMT," says Elizabeth Hohmann, MD, of the Massachusetts General Hospital (MGH) Infectious Diseases Division, senior author of the study. "These few key species seem to work in restoring a healthy microbiome, and other, beneficial species not in the capsules return, while harmful bacteria are removed. The product is also designed to be safer than FMT, by eliminating the potential for transmission of pathogens that might be present in donor fecal material."
http://medicalxpress.com/news/2016-02-oral-capsule-bacterial-spores-effective.html
http://www.serestherapeutics.com/pipeline/ser-109
 
I just wanted to comment on here, I had a FMT in october for recurrent cdiff... I felt great after a few days. Like a completely new person.. Unfortunately, I had to stay off my crohns medicine for a few months afterwards and ended up flaring again.. But the cdiff has stayed away. I felt the best i had in a very long time afterwards
 
FMT pill used to treat C.difficile is very successful, similar pills are currently being studied to be used for Crohn's and U.C. pills will be safer and easier then a fecal transplant, and may even be more effective at repairing a damaged microbiome.

http://medicalxpress.com/news/2016-02-oral-capsule-bacterial-spores-effective.html
http://www.serestherapeutics.com/pipeline/ser-109
I read a report (I can't find the link ATM) that says it's expected that the microbiome treatment/diagnostic field will grow by about 75% a year over the next decade or so. Over the past couple years there's been about $1 billion venture capital flowing into the field. And that's expected to grow as well. There's a lot more players in the field now than there was a couple years ago. There might be some exciting developments coming along in the next couple of years. Research into treating recurrent CDI seems to be the short term objective, but CD and UC seem to be on the horizon.
 
I read a report (I can't find the link ATM) that says it's expected that the microbiome treatment/diagnostic field will grow by about 75% a year over the next decade or so. Over the past couple years there's been about $1 billion venture capital flowing into the field. And that's expected to grow as well. There's a lot more players in the field now than there was a couple years ago. There might be some exciting developments coming along in the next couple of years. Research into treating recurrent CDI seems to be the short term objective, but CD and UC seem to be on the horizon.
C.diff may have been a priority because people more frequently die from it. Much of the knowledge about c. diff will further support the concept of Bacteriotherapy for Crohn's. Its hard to understand which companies products will survive, they seem to be all treating the same diseases though, kind of a wild west of sorts, with different strategies. Some products aren't even using bacteria but metabolites of bacteria and I'm absolutely not interested in any of that knowing what I know about the disease and the probabability of curing it by restoring the microbiome permanately. I almost feel like investing in these companies myself!!
 
Just reading some more info about Seres Therapuetics, the company who devloped SER-109 to restore a healthy microbiome in C. difficile patients, interesting stuff.

http://www.serestherapeutics.com/our-science/microbiome-therapeutics-platform

SER-301 could be for Crohn's disease, there is a chart in this link which shows how far along the drug is in development, its going to be at least a few years it seems for crohn's disease, but there are other companies which may be further along for IBD.
http://www.serestherapeutics.com/pipeline/products
 
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Spooky1

Well-known member
Location
South Northants
We just need to wait until big pharma can make enough from this. then we will all be fine, so long as we keep taking their weakened down form in the pill. The magical cure one wouldn't bring them enough me thinks. But i'm still hopeful and just biding my time.
 
We just need to wait until big pharma can make enough from this. then we will all be fine, so long as we keep taking their weakened down form in the pill. The magical cure one wouldn't bring them enough me thinks. But i'm still hopeful and just biding my time.
Since know one has tried this method before(treating disease with live/dormant probiotic bacteria), know one knows for sure whether restoring the microbiome with bacteria will cure IBD, the current research strongly suggests this is what could happen but these companies will have to consider it an unexpected side effect of the medication. I'm sure the people who are making these pills are generally aware of this possibility, but to say something is a cure needs to have very good evidence to support that claim and we just aren't there yet. We have maybe 7 cases of IBD that seems to be cured, that's very small number but some good evidence to suggest it could happen.
 
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Spooky1

Well-known member
Location
South Northants
they've got a nerve treating fat people before us Crohnies. I don't mean to be rude but they ate too much of the wrong stuff. I'd like more food than just liquid E028extra. A hot meal for instance.
 
It has been 6 months since my 10-day FMT treatment ended and I am in good health, despite having significantly reduced my medication. I was at a crossroads with my UC: to impede my immune system with expensive drugs that have serious side-effects, or battle what was causing my immune system to react. I obviously chose the latter. So far, so good!
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It has been 13 months since my 10-day FMT treatment ended. I have been putting-off this 12 month report since it's not good news. Unfortunately, I'm back to symptoms similar to before my FMT. The quoted post will give you the background on the protocol I followed just over a year ago, and here I will report what has happened since. Right now I am under control, but I'm taking the maximum dose (4.2g) mesalamine, and also using the mesalamine suspension nightly.

I had maintained hope that the FMT would have caused my gut microbiome to settle in a place where UC symptoms would be gone, but I decided in November that if the microbiome had shifted, that was not going to help me to live with UC, long-term. In September, I began seeing small red streaks, but just once or twice a month. Otherwise, I felt fine. But in November, I knew that the old inflammation had returned. That flare was of short duration, but I finally had to admit that the FMT was only a temporary fix for me.

This is paragraph isn't about FMT, but instead about my experiment with gluten. Gluten testing (Cyrex) indicated I had sensitivity to 3 of the 24 things tested (regular doc's test had 3 things, not sensitive to those). Anyway, in December I decided to hit gluten hard (daily bread, lol!), as opposed to my almost gluten-free diet. "Almost" means I would drink beer and not worry about traces of gluten or even sauces thickened with flour, but no bread, crackers, etc. So after eating bread or crackers every day for a few weeks, I had inflammation again, to the point of introducing a low residue diet. It was then that I decided to go strict gluten-free. No sign of blood since November. As I said earlier, I'm stable now with the top and bottom mesalamine. I'm going to hit the gluten again (when I get the courage), and see if it, again, is aligned with inflammation symptoms. But that's a story for another day.

So looking over my diary for the last 18 months, it starts with 4 months with frequent blood and mucus, then a relatively calm spot before the FMT, then 10 months of calm after the FMT. It wasn't perfect digestive health during that time, but it was a pretty long span with nothing to report. That span could have been at least partially due to my being more careful with my diet (very little processed carbohydrate and more raw plant material). The last few months I've had a few minor short flares. That's enough to convince me that if the 10-day FMT changed my gut microbiome, then that's not enough. Or maybe my original gut microbiome re-asserted itself. I had sent a pre-FMT sample to the American Gut Project, but they apparently lost it, or something. I'd really like to do a compare between now and then to see if it changed, or is the same as pre-FMT. But I don't think I'm going to get anywhere with that. So if symptoms persist even through maximum doses of mesalamine, I might have to be done with the FMT route, give-in, and go with anti-inflammatory biologics.
 
7vNH, what can I say, it's an experimental procedure that is not perfected yet and one you should not expect reliable results with. Also, a low residue diet is low in fiber, I thought you were aware this old advice is no longer good and the high fiber foods improve IBD. This knowledge is crucial to even performing a successful FMT. If it is true you had 10 months of calm after fmt then it sounds like it was partially successful, and that's a good thing. After an FMt you really should adopt a high fiber, low meat dairy egg diet for life since we know how the gut bacteria rely on this for nutrition. By all means though, control your disease with drugs but in no way does this experiment you did conclusively tell us about the potential of restoring the microbiome in IBD, but we are glad to hear about your experiences. Maybe in the future you can try it again but of course, try to improve the procedure to get better results, I think you got some decent results and you should feel good about that, at least you got something out of the experiment.
 
Thanks WB, I might try FMT again. Didn't mean to imply that FMT didn't have potential, just that in my case, the benefits didn't last all that long. Glad to have seen some benefits, though. And I think I did the post-FMT diet correctly...I was eating very little processed carbohydrate and more raw plant material. The only time I went low residue was for a few days to give myself a rest during and after a flare. If I do get the FMT treatments again, I'll have uBiome tests before and after.
 
This paywalled FMT study in children may shed some evidence on whether dysbiosis is a cause or result of IBD.

"FMT gives sustained C. difficile eradication in children with and without IBD. FMT-restored diversity is sustained in children without IBD. In those with IBD, bacterial diversity returns to pre-FMT baseline by 6 months, suggesting IBD host-related mechanisms modify faecal microbiome diversity."
 
In those with IBD, bacterial diversity returns to pre-FMT baseline by 6 months, suggesting IBD host-related mechanisms modify faecal microbiome diversity."

These study results could mean alot of things, "IBD host-related mechanisms modify faecal microbiome diversity" is just one possible meaning. We have known for sometime IBD requires multiple FMT's to have an effect and c. difficile patients often are cured with only 1 FMT, it would be nice to know more about how they measured diversity in this study and we also know that different donors have varying quality of stool health. My question is to what degree of diversity was momentarily restored in these patients? Maybe this means there is an Intracellular pathogen that take's much more time to eliminate then c. difficile, maybe this is something that could be considered an "IBD host related mechanism". Don't forget we have official reports of FMT curing IBD as well so there is lots of evidence which "suggests" many possibilities.
 
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Hi Wild Bill,
"IBD requires multiple FMT's to have an effect" Do you have a reference for how many FMT's are most effective? Do they need to be done on consecutive days or could they be done say once a week for a given number?

jayann
 
Hi Wild Bill,
"IBD requires multiple FMT's to have an effect" Do you have a reference for how many FMT's are most effective? Do they need to be done on consecutive days or could they be done say once a week for a given number?

jayann
Read the first post of this thread, some early experiments it took 30-60 FMT enemas in crohn's patients to get remission, also some cases using single FMT via nasogastric tube achieved long remissions without drugs which some consider to be a cured since they have been confirmed to be free of crohn's from follow up colonoscopy 13 years later.
 
from the previous article in the conclusion: '' More than 25% of patients with IBD have a disease flare following FMT.''
Scary and unfortunate...
Again it all depends on the health of the donor, 25% is still pretty low for any adverse event. This is why a FMT pill with only the good bacteria will be superior, using whole stool can potentially contain pathogenic bacteria as well as the good bacteria we need to restore the microbiome, while a pill could contain only the good.
 
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from the previous article in the conclusion: '' More than 25% of patients with IBD have a disease flare following FMT.''
Scary and unfortunate...
but how soon we forget the great things we already know!! 76% of patients achieved remission within one month following single oral FMT for refractory crohn's disease, these may be the most dramatic turnarounds ever observed in science. The study you commented on was for colonoscopic FMT, please note again I have been promoting the idea of oral FMT as more promising for quite a few years now.
http://www.ncbi.nlm.nih.gov/pubmed/25168749
 
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News from the University of Connecticut whom are also trying to create a Fecal transplant pill.

“You have in your gut this tremendous fermenter,” says microbiologist George Weinstock, Evnin family chair and director of microbial genetics at the Jackson Laboratory. “Full of species as diverse as a tropical rainforest.” And, much like a tropical rainforest, many of these organisms are obscure, unknown to science because their native habitat is hard to explore and the organisms hard to breed in a lab. Weinstock and fellow microbiome researcher Julia Oh have developed bioreactors at the Jackson Laboratory in Farmington that can grow these fragile organisms and reproduce entire artificial microbiotic communities.

They’ve been happy to partner with UConn Health gastroenterologist Dr. Tom Devers and nurse Lynn Baccaro. Devers and Baccaro have been treating patients with life-threatening gut infections since 2012 using fecal transplants. They take the bacteria-rich intestinal contents (otherwise known as poop) from a healthy person and put it in the colon of someone who’s sick with C. difficile, a terrible bacteria that ravages the gut. And 95 percent of the time, the person is cured within days.

Devers and Baccaro also want to know why their patients get healthy. What is it about the microbiome population of a healthy person that so quickly rescues the gut of someone suffering from C. difficile? And could they possibly make an extract of pure bacterial strains that a patient could swallow, instead of enduring a fecal transplant?

Weinstock and Oh think the answer to that last question is yes. They’ve developed a collection of four bacteria types that, when swallowed by a mouse with C. difficile, cure the mouse. Will it work in humans? Baccaro and Devers would like to do a study to find out."
http://today.uconn.edu/2016/03/uconn-jax-partnership-begins-to-bear-fruit/
 
If they don't want to make a Crohn's FMT pill we are gonna have to surreptitiously find a way to get all of us on this forum to get infected with C-Diff.
HAHA! my thoughts exactly. IBD patients are next in line though, I assure you. Surprisingly this may be kind of a new benefit of getting c. diffcile when you also have IBD and suddenly one of the most deadly diseases... is in high demand! Remember though, the dosage that clears c diff, may not correct IBD, it could take a week treatment rather then a day, we just have to have the experimental data and we are waiting on that.
 
Results of a new study On U.C. using Fecal Microbiota transplants.
http://www.medscape.com/viewarticle/860690

My thoughts:
I'm just really waiting for FMT pills to be used in IBD, but this study helps give the idea of FMT more merit because it was a placebo controlled study and demonstrated much greater efficacy compared to placebo. Supposedly these are some of the best ways to demonstrate the effectiveness of any therapy, but even in some single case studies FMT has shown such a dramatic effect, it's hard to ignore, but this study will always help further the cause.
 
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This is the first trial that I've seen that "does it right", with respect to number of infusions.
Forty-one adults were treated with an initial fecal microbiota transplantation, delivered by colonoscopy, followed by five active enemas per week for 8 weeks.
They all started out with an empty colon and they did plenty of infusions using multiple donors. It was an "open label" study, though. It doesn't say what the placebo group did...maybe they gave them sterilized (killed) FMTs? I can't imagine why someone would knowingly go through 40 worthless enemas. It does say that 37 (of the 40) in the placebo group switched to live FMTs after 8 weeks. Maybe the option to switch is why they did 40 worthless ones.

The study says that 37% got a response and 17% got remission of their UC. Of those that switched at week 8, 27% got a response (compared to the 37%).

To me, this is essential information if someone with UC is considering the FMT route since it gives them an idea of how likely it is that they will get benefit (in the 30% range). It's still a roll of the dice, but it's better than the sketchy information I had a few years ago.

Improvements for the next study might include being double blind, large, and possibly using Borody's antibiotic cocktail the week before.
 
This is the first trial that I've seen that "does it right", with respect to number of infusions. They all started out with an empty colon and they did plenty of infusions using multiple donors. It was an "open label" study, though. It doesn't say what the placebo group did...maybe they gave them sterilized (killed) FMTs? I can't imagine why someone would knowingly go through 40 worthless enemas. It does say that 37 (of the 40) in the placebo group switched to live FMTs after 8 weeks. Maybe the option to switch is why they did 40 worthless ones.

The study says that 37% got a response and 17% got remission of their UC. Of those that switched at week 8, 27% got a response (compared to the 37%).

To me, this is essential information if someone with UC is considering the FMT route since it gives them an idea of how likely it is that they will get benefit (in the 30% range). It's still a roll of the dice, but it's better than the sketchy information I had a few years ago.

Improvements for the next study might include being double blind, large, and possibly using Borody's antibiotic cocktail the week before.
I agree, maybe they were glad to have the opportunity to get the real treatment after the placebo enemas, the fact that they began to respond to real stool helped emphasize the effect of FMT. For the record, right now FMT is still an experimental treatment option for IBD that's being explored and not ready for everyone to do, except for some well informed adventurous folks like myself.
 
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