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02-16-2015, 08:33 AM   #331
Spooky1
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I am so hopeful that this will become an option for treatment soon, and I hope it works.
02-16-2015, 05:30 PM   #332
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Too bad we can't read the whole study. I'd like to know if it was just a one time NG treatment, and if the end of the NG tube was past the stomach. Only nine "kids" too...the details of the study might add credibility. If it was just one NG treatment, then super easy to get another if the first one didn't "stick". The suggestion that a non-similar donor is more likely to yield the best results is something I had heard before...nice to have this bit of proof on that. Makes it less easy for DIY'ers, but if they try it with an SO and it doesn't help, they shouldn't give up...they need to try again with a dissimilar microbiome.
02-23-2015, 05:45 PM   #333
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An article written by Professor Alexander Khoruts, he is one of the pioneering researchers of fecal transplants.

http://www.kevinmd.com/blog/2015/02/...tream-yet.html
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Learn How Fecal transplants restore good bacteria that regulate inflammation to induce remission and how it has potential to be a cure for IBD in the future. Follow the link below.
http://www.crohnsforum.com/showthread.php?t=52400
02-26-2015, 09:42 AM   #334
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Is there anybody who can help me...
My son has had a temporary ileostomy for 4,5 years now. His colon is bleeding very badly and he has CD and maybe also diversion colitis. Now his GI proposes FMT. I am quite scared what will happen when we inject the transplant into the colon that hasn't been used in 4,5 years and that is badly inflammated! Has anybody any experience in this? Any cases studies available?

Thanks a lot in advance!
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*Son (9 years) with severe Crohn's diagnosed at the age of 26 months, currently UC or Crohn's colitis
*Current mediacation: IVIG, Humira, Azathpriorine, Eusaprim
(Tested but failed: Modulen IBD, Neocate advance, Budenofalk, Remicade, Azathpriorine, MTX, Jerusalem cocktail, cycklosporine, pentasa,...)
02-26-2015, 02:53 PM   #335
wildbill_52280
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Is there anybody who can help me...
My son has had a temporary ileostomy for 4,5 years now. His colon is bleeding very badly and he has CD and maybe also diversion colitis. Now his GI proposes FMT. I am quite scared what will happen when we inject the transplant into the colon that hasn't been used in 4,5 years and that is badly inflammated! Has anybody any experience in this? Any cases studies available?

Thanks a lot in advance!
I havent heard of FMT used yet in this specific situation so i cant say anything with absolute certainty, but in all probability, if the donor selected is screened very well to be healthy and free of diseases, and also follows a high fiber diet before donating, there isn't any reason to be scared of fecal transplants, safety profile is very good so far but ONLY if you follow screening procedures well.

I encourage you to view section 5 in the initial post under the section HOW TO SELECT A DONOR and view the two links and maybe print them out where Dr Borody and Dr Khoruts created a very strict donor selection screening process. Choose a healthy family member or a friend who is superbly healthy then work with your doctor to screen them properly. These guidelines are pretty strict and not all of them are absolutely necessary, but just so you know how strict you could be in the donor selection process to make it as safe as possible and limit your risks. Let us know how things go and we wish you the best!
03-02-2015, 05:07 PM   #336
wildbill_52280
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A recent article in Scientific American about gut bacteria and the possible cause of IBD.
http://www.scientificamerican.com/ar...w-are-special/
03-02-2015, 07:39 PM   #337
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hi Malgrave,

there are currently several clinical trials of FMT for pediatric IBD:

https://clinicaltrials.gov/ct2/resul...&Search=Search

However, considering your son's particular situation, I think it could be more difficult for him to be accepted. Have you reviewed these trials? You can always contact the researchers and ask them what they think or know about a case like your son's.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
03-02-2015, 08:20 PM   #338
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This site lists research papers by Prof. Sonnenburg at Stanford Dept. of Microbiology and Immunology. He's one of the main sources referenced in the Scientific American article. His research evolves around the various mechanisms of symbiotic relationship between the host and its microbiome. Very interesting reading.
03-06-2015, 12:55 AM   #339
wildbill_52280
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Somehow I found the full version of the most recent study on FMT. I have yet to read it though.


Inflammatory Bowel Diseases:
March 2015 - Volume 21 - Issue 3 - p 556–563

Fecal Microbial Transplant Effect on Clinical Outcomes and Fecal Microbiome in Active Crohn's Disease
http://journals.lww.com/ibdjournal/F...linical.7.aspx
03-06-2015, 09:43 AM   #340
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I especially appreciate that the above study was published in the CCFA Journal. Very hopeful!
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Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
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03-06-2015, 10:32 AM   #341
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Thats great news!

it seems multiple or maintenance treatments will be needed, as fecal calprotectine rose in most patients 12 weeks after treatment.

In the conclusion, they discuss about E coli :''Another possible predictor of disease activity and duration of efficacy seems to be the appearance or resurgeonce of E. coli. We notice a trend of increasing calprotectins with an increase in E. coli abundance. Although this finding may be a helpful predictor of efficacy of therapy, there is no clear casual affect. However, in patients with significant dysbiosis with E. coli, therapy targeted at its suppression followed by FMT could be another potential therapeutic trial in the future.''
03-06-2015, 10:54 AM   #342
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I've cited this Scientific American article before, where they talk about some of the advances on microbiome research (including reference to Vedanta Biosciences proprietary "super-citizen" bacterial strains, which Janssen -- of Remicade fame -- just picked up for a cool $250 million).

In the article, Prof. Sonnenburg, a microbiologist from Stanford Medical Lab talks about how once the unhealthy microbiome establishes itself, an inertia sets in that is hard to overcome. This may be why FMT doesn't seem to take in Crohn's. He sees that treatment paradigm may evolve where you simultaneously treat the host and the microbiota, say using antibiotics to clear the slate, use immunotherapy to quell the inflammation, and then reintroduce the healthy strains that can take hold and re-establish homeostasis.

Exciting times!

Thats great news!

it seems multiple or maintenance treatments will be needed, as fecal calprotectine rose in most patients 12 weeks after treatment.

In the conclusion, they discuss about E coli :''Another possible predictor of disease activity and duration of efficacy seems to be the appearance or resurgeonce of E. coli. We notice a trend of increasing calprotectins with an increase in E. coli abundance. Although this finding may be a helpful predictor of efficacy of therapy, there is no clear casual affect. However, in patients with significant dysbiosis with E. coli, therapy targeted at its suppression followed by FMT could be another potential therapeutic trial in the future.''
03-06-2015, 02:19 PM   #343
wildbill_52280
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I've cited this Scientific American article before, where they talk about some of the advances on microbiome research (including reference to Vedanta Biosciences proprietary "super-citizen" bacterial strains, which Janssen -- of Remicade fame -- just picked up for a cool $250 million).

In the article, Prof. Sonnenburg, a microbiologist from Stanford Medical Lab talks about how once the unhealthy microbiome establishes itself, an inertia sets in that is hard to overcome. This may be why FMT doesn't seem to take in Crohn's. He sees that treatment paradigm may evolve where you simultaneously treat the host and the microbiota, say using antibiotics to clear the slate, use immunotherapy to quell the inflammation, and then reintroduce the healthy strains that can take hold and re-establish homeostasis.

Exciting times!
Thanks xeridea, I did not realize Janssen made Remicade.

Just a reminder, the women with crohn's who seems to have been cured after FMT at borody's clinic which was verified with a follow up colonoscopy 12 years post FMT, received a large volume oral dose from 3 donors. Getting 3 donors stool at once would increase the probability of getting the right bacteria she needed. http://www.abc.net.au/news/2014-03-1...seases/5329836

It seems to be true that once severe dysbiosis sets in it is quite resistant to correction. low doses of good bacteria spaced over a long period of time is probably not an effective dosing schedule, and many studies have suggested that. 30 to 60 enemas is pretty inefficient compared to one oral dose or soon to come, a pill.

They are trying to standardize the dosages, but even if they give the same amount of stool to saline ratio to patients, the donors microbiota could still vary by alot depending on their diet. manipulating other variables like the patients microbiome with antibiotics before FMT and suppression of inflammation or immune system would help, but if we cant get the right amount of the right kind of bacteria in the dosage, those other variables just don't matter that much yet. If we ENSURE the right bacteria(whichever they are) in the high enough dosage then success would likely occur every time for everyone.After this is addressed, we don't have to put any effort into manipulating the other variables at all, but we could just to make things even faster, but addressing this prime variable precedes all others. Another variable is the diet of the patient. I always prefer the most natural manipulations before we start throwing in antibiotics again, haven't we learned our lesson yet? http://martinblaser.com/

Last edited by wildbill_52280; 03-06-2015 at 11:53 PM.
03-06-2015, 06:52 PM   #344
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Mr. Bill, in the Discussion section of the study you cite above, they point out: "There was a significant difference in clinical outcome between the patient with the least and most microbial similarity between recipient and donor. This could indicate that the more divergent a Crohn's patient is from his donor the more the potential benefit of transplantation." (emphasis mine)

You seem to be spot on. It's not just a matter of samples from a healthy donor. It has to be the right and perhaps complementary bacteria. With the 16s RNA sequencing becoming readily accessible in the clinical setting, this may become easier and easier to fine tune. And I think there are companies now that can provide targeted samples. And outfits like OpenBiome, or perhaps other commercial ventures, may soon be able to provide donor matching based on such guidelines.
03-07-2015, 12:22 AM   #345
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Thats great news!

it seems multiple or maintenance treatments will be needed, as fecal calprotectine rose in most patients 12 weeks after treatment.

In the conclusion, they discuss about E coli :''Another possible predictor of disease activity and duration of efficacy seems to be the appearance or resurgeonce of E. coli. We notice a trend of increasing calprotectins with an increase in E. coli abundance. Although this finding may be a helpful predictor of efficacy of therapy, there is no clear casual affect. However, in patients with significant dysbiosis with E. coli, therapy targeted at its suppression followed by FMT could be another potential therapeutic trial in the future.''
This wouldn't be the first observation of this relationship between ecoli and inflammation. But it seems that it's the inflammation that may precede the bloom of e coli as they can feed on nitrate.http://www.ncbi.nlm.nih.gov/pubmed/23393266

The idea of an e coli bloom further reinforcing the inflammatory response by another mechanism is also a possibility. http://en.wikipedia.org/wiki/Positive_feedback

Last edited by wildbill_52280; 03-07-2015 at 12:38 AM.
03-11-2015, 09:15 PM   #346
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"There's a person who got a fecal transplant with ALS(amyolaterosclerosis) that a doctor confirmed had ALS, that a doctor confirmed got up out of his wheelchair and walked after a fecal transplant which we've never seen with any other treatment for ALS."

Richard Bedlack, MD, PhD
Duke ALS Clinic

http://www.wndu.com/home/headlines/R...295954201.html
03-13-2015, 03:25 AM   #347
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I will be travelling to the UK and the Taymount clinic in early May to do 10 days of FMT. Thought I'd share the preparation protocol and some of the details I have received of their methods.

I have Crohn's colitis, dx last year and have pretty much been in remission since then although I still struggle some days. Currently only on Pentasa, which I'm not sure even does anything. My calprotectin levels were in normal range (below 50) for almost six months but started creeping up around Christmas and is now at around 150.

The minimum amount of FMT transplants available at Taymount is 10 days, which means you have to spend two weeks there. They use samples from several donors, and also try to match so that donor samples are different from yours and can "fill in the gaps". You have to provide Genova stool testing before undergoing the treatment to check you gut health and see what your gut flora looks like. After the treatments are finished, they provide you with two samples to take home and administer at home. They also show you how to do this. If you want to buy further samples for home treatment, this is also available.

Taymount has developed a method to extract the microbiome, including the anaerobe bacteria. They do freeze it, so the samples are not fresh.

They are very strict about the preparation procedure you have to follow. Four weeks before the treatments begin you are supposed to start taking something called Oy-klenz, which is basically magnesium peroxide which re-hydrates your bowel. You are to increase your dose until you have very soft stool. This is to completely evacuate the bowel of any hardened material that may be stuck to the bowel wall, which otherwise takes up precious time in clinic. Two weeks before treatment, you need to have a colonic irrigation, and then finally 2-3 days prior to travelling you are to take a laxative similar to what you take for a colonoscopy prep (without the low residue diet). They don't propose a special diet before the treatments, although they do give advice on diet once you are there, but particularly afterwards.

Since you are a group of people that have looked into FMT alot, I'd also like t ask some questions.

1. I'm currently debating whether to increase my supplements of soluble fibers (inulin, GOS, acacia, psyllium, glucomannan) to try to improve my microbiome or completely stop fibers and go on a very low fiber diet (to starve my microbiome). Any idea which might be more beneficial for the FMT to be successful?

2. Have you read anywhere about the influence of diet on success of FMT? I suspect that some people who do the FMT don't feed their new microbiome properly, which might lead to a worse outcome.

I hope the above information was of some interest!
03-13-2015, 07:16 PM   #348
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I personally would fallow the clinic guidelines regarding diet.

Do you know already what is the diet they advice after FMT and for how long it has to be maintained or it is a lifelong diet? Im curious about that.

Good luck
03-13-2015, 10:54 PM   #349
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Boax, I think the recommendation would be to keep your diet stable with foods and supplements that have agreed with you in the past. I'm no expert, but I seroiusly doubt that you can do much to alter a gut disbiosis with supplements.

If you want to deliver a one two punch to knock out your current microbiome, you could take a week or ten days of an antibiotic cocktail...that is, 3 to 5 antibiotics to reduce the numbers of your current microbiome. I would NOT do this unless I was scheduled for an FMT. I would stop taking the antibiotics 36 to 48 hours before the first treatment. I don't think Taymount recommends this, though. But since they are not doctors, I think they want to stay away from prescribing drugs. If you search, you can find studies where the specific set of antibiotics and dosages are defined. You could get your local doc to prescribe them (just show them the paper).

I believe that your number 2 is absolutely true. The go-to good gut bacteria food is thought to be galactooligosaccaride prebiotics .
03-13-2015, 11:24 PM   #350
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The go-to good gut bacteria food is thought to be galactooligosaccaride prebiotics .
could you expand on this please? what do you consume for prebiotics? I consume lots of onions and raw saukrates as proposed in the IBD-AID diet: ''strong emphasis on the ingestion of pre- and probiotics (e.g.; soluble fiber, leeks, onions, and fermented foods) to help restore the balance of the intestinal flora''
03-15-2015, 09:22 PM   #351
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could you expand on this please? what do you consume for prebiotics? I consume lots of onions and raw saukrates as proposed in the IBD-AID diet: ''strong emphasis on the ingestion of pre- and probiotics (e.g.; soluble fiber, leeks, onions, and fermented foods) to help restore the balance of the intestinal flora''
You are on the right track with root veggies. I wrote a wiki page here: http://www.crohnsforum.com/wiki/Prebiotics

This forum site should be making the word "Prebiotics" into a link to that wiki, but for some reason, it has stopped doing that.

I consume one packet of Bimuno every day to feed the good guys.
03-16-2015, 03:37 AM   #352
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One packet? that works out expensive doesn't it?
03-16-2015, 03:23 PM   #353
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Here is a new article on the latest FMT study on crohn's disease, which is in post #339 of this thread.

http://pulse.seattlechildrens.org/st...rohns-disease/
03-16-2015, 06:34 PM   #354
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From the above article dr Suskind:

''To test the effectiveness of treating IBD with fecal microbiota transplant, Suskind designed a study that included patients with Crohn’s disease as well as patients with ulcerative colitis, all of whom were experiencing flare-ups of their symptoms. Each patient received a single treatment of stool (donated by their parent) mixed with saline, via a nasogastric tube.
While patients with ulcerative colitis did not improve significantly, the majority of those with Crohn’s did''

I guess he didnt publish those results yet...?
So now I am discouraged since my colitis is indeterminate and looks more like a UC...
03-16-2015, 06:55 PM   #355
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From the above article dr Suskind:

''To test the effectiveness of treating IBD with fecal microbiota transplant, Suskind designed a study that included patients with Crohn’s disease as well as patients with ulcerative colitis, all of whom were experiencing flare-ups of their symptoms. Each patient received a single treatment of stool (donated by their parent) mixed with saline, via a nasogastric tube.
While patients with ulcerative colitis did not improve significantly, the majority of those with Crohn’s did''

I guess he didnt publish those results yet...?
So now I am discouraged since my colitis is indeterminate and looks more like a UC...
Don't worry, there is the 2003 study which showed FMT is effective in U.C, in fact these were the first reports of people seeming to be 100% cured, but they used multiple enemas which could possibly be slightly more effective for U.C. Refer to the first post of this thread.

Last edited by wildbill_52280; 03-16-2015 at 11:54 PM.
03-17-2015, 09:49 AM   #356
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I personally would fallow the clinic guidelines regarding diet.

Do you know already what is the diet they advice after FMT and for how long it has to be maintained or it is a lifelong diet? Im curious about that.

Good luck
Thanks

The diet they recommend after FMT seems to be loosely based around Paleo and well aligned with the diet proposed in the book Grain Brain by Dr David Perlmutter. In their brochure they acutally have a few recommended books on diet:
The High Fat Diet - Zana Morris
Eat The Yolks - Liz Wolfe
Grain Brain
Wheat Belly - Dr William Davis.

Now, keep in mind that this is for ALL patients, I have not yet received any special recommendations for Crohns or IBD and likely won't until I'm at the clinic. But basically they seem to recommend to avoid gluten and refined starches, sugar and all kinds of processed foods. Eat animal proteins, a large variety of vegetables including raw, increase intake of fats such as ghee, coconut oil, olive oil. I'll ask them about adherence to diet, but I assume that they will want you to stay on such a diet through life. It's not very restrictive and probably good for you in many other ways if you can handle it.

I think the IBD-Aid diet which you follow is quite similar but more tailored to IBD obviously. IBD-AID is also very tailored to each patient with different diet for each stage, so quite different from most other diets.
03-17-2015, 09:53 AM   #357
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could you expand on this please? what do you consume for prebiotics? I consume lots of onions and raw saukrates as proposed in the IBD-AID diet: ''strong emphasis on the ingestion of pre- and probiotics (e.g.; soluble fiber, leeks, onions, and fermented foods) to help restore the balance of the intestinal flora''
There's so much to say about prebiotics. I really recommend you read through the FIBER series on the blog vegetablepharm (and also somewhat on drbganimalpharm). He has a TON of interesting info there, and don't forget to also read the comments - this is were some of the most interesting information is.

Basically, prebiotics are foods for your benefical gut flora. There are many and can be found in a lot of vegetables, roots etc. E.g. leeks and onions contain a lot of inulin, whereas beans contain a lot of GOS. A typical person on a western diet eats around 15g of fermentable fiber per day at best. If you look at more rural societies such as the Hazda tribe in Africa and from petrified stool samples they have in excess of 100g of fermentable fiber day and suffer none of these kinds of conditions. There are plenty of interesting studies on prebitiocs and they seem very beneficial, particularly for UC.
03-17-2015, 09:56 AM   #358
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From the above article dr Suskind:

''To test the effectiveness of treating IBD with fecal microbiota transplant, Suskind designed a study that included patients with Crohn’s disease as well as patients with ulcerative colitis, all of whom were experiencing flare-ups of their symptoms. Each patient received a single treatment of stool (donated by their parent) mixed with saline, via a nasogastric tube.
While patients with ulcerative colitis did not improve significantly, the majority of those with Crohn’s did''

I guess he didnt publish those results yet...?
So now I am discouraged since my colitis is indeterminate and looks more like a UC...
As Wildbill said, there's plenty of studies showing 100% cures of UC. Actually, UC in most procedures seem to actually respond better to probiotics, prebiotics and FMT than Crohn's which seems to be a more difficult disease. For example right now professor Borody of Australia is recruiting people for a big UC FMT trial. I'm sure that's because he has seen very strong results from his case studies, otherwise he probably wouldn't do it this way.
03-17-2015, 11:40 AM   #359
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One packet? that works out expensive doesn't it?
I order directly from the manufacturer and with international shipping it comes to under a buck a day. If one spends the time, money, energy to get a replacement of their micribiome, that's pretty cheap insurance to keep those new guys as happy as possible.
EDIT: the price is actually $0.37/day,delivered from the UK. That is taking advantage of a buy 2 get 1 free promotion that the manufacturer is running.

Last edited by 7vNH; 04-24-2015 at 09:21 AM. Reason: Corrected factual error
03-17-2015, 11:52 AM   #360
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From the above article dr Suskind:

''To test the effectiveness of treating IBD with fecal microbiota transplant, Suskind designed a study that included patients with Crohn’s disease as well as patients with ulcerative colitis, all of whom were experiencing flare-ups of their symptoms. Each patient received a single treatment of stool (donated by their parent) mixed with saline, via a nasogastric tube.
While patients with ulcerative colitis did not improve significantly, the majority of those with Crohn’s did''

I guess he didnt publish those results yet...?
So now I am discouraged since my colitis is indeterminate and looks more like a UC...
Another reason why not to be discouraged is that many of these studies do FMT "wrong". NG tube is probably OK, but they don't do it more than once, and they don't get a good donor (healthy, young, eats paleo or otherwise few refined foods), and the donor should not be from your household unless the donor micribiome is proven to be highly divergent from the recipient.
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