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03-17-2015, 12:50 PM   #361
wildbill_52280
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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.
I'm going to have to disagree with the claim that wheat is bad for our guts specifically because of this study. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3023594/

GMO wheat on the other hand may present some issues, or wheat that contains some herbcide residues like glyphosate. http://www.ncbi.nlm.nih.gov/pubmed/23224412

Also, high animal protein diets have been linked to the development of IBD. I would restrict the meat to fish only and 2-3 times a week. You may also remove meat and eggs completely from the diet. http://www.npr.org/blogs/thesalt/201...ot-and-quickly

high fat diets are also not very good on the gut bacteria.
Good bacteria love polysachrides or complex carbs/starches/fiber. Basically plant foods, whole grains, tubers,legumes,nuts, fruits and veggies.
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http://www.crohnsforum.com/showthread.php?t=52400

Last edited by wildbill_52280; 03-17-2015 at 01:20 PM.
03-17-2015, 09:48 PM   #362
7vNH
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The problem with wheat isn't the effect on the gut microbiome, its the fact that in many of us, the proteins are potent antigens. Reading "Grain Brain" is worth the time.

The raw foods on the recommended diet are supposed to be organic and full of a wide variety of microbes. The recommendation includes lots of fermented foods (kraut, kefir, etc).

I'll take something a paleo person could have somehow got their hands on rather than ANYTHING that is refined!! No matter what a narrow study might suggest.

I'm sure there are people with genomes and microbiomes that do not tolerate raw foods and meat of the paleo diet, so I wouldn't say its for everyone.
03-17-2015, 10:29 PM   #363
wildbill_52280
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The problem with wheat isn't the effect on the gut microbiome, its the fact that in many of us, the proteins are potent antigens. Reading "Grain Brain" is worth the time.

The raw foods on the recommended diet are supposed to be organic and full of a wide variety of microbes. The recommendation includes lots of fermented foods (kraut, kefir, etc).

I'll take something a paleo person could have somehow got their hands on rather than ANYTHING that is refined!! No matter what a narrow study might suggest.

I'm sure there are people with genomes and microbiomes that do not tolerate raw foods and meat of the paleo diet, so I wouldn't say its for everyone.

So I considered the information you suggested and did some more information and found this.
http://www.ncbi.nlm.nih.gov/pubmed/6502368

It doesn't mean that wheat is bad for humans though, just means that wheat might be bad for those with small intestinal issues. I'm wondering if this relationship isn't similar to other foods that affect other symptoms of IBD, like lactose and sucrose and select polysacharides which is all the basis for the specific carbohydrate diet. not in the sense that they all stimulate antibodies, but in the sense that they influence certain symptoms. There is good reason that all of these relationship between food and certain diseases symptoms are related to the bacteria in the gut. This is another reason why restoring the missing bacteria with fecal transplant is planned for the use in many diseases, there are FDA studies for FMT in diabetes and autism, and some reports of recovery from ALS and multiple sclerosis.

Last edited by wildbill_52280; 03-18-2015 at 12:01 AM.
03-18-2015, 05:41 AM   #364
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Does anyone have concerns over fmt procedure? There are so many unknowns. We don't know what to expect, just hoping to get better. We can get worse; even unknowingly. For example, I have concerns over fmts effects on mental and neurological health. We know it can change them. Genetics play role on gi flora and how body handles the microorganisms. One's gut flora may make himself/herself healthy but can make another one sick or change him/her physically, mentally. We don't know how we are going to react to another one's microorganisms.

http://www.ucsf.edu/news/2014/08/116...rule-our-minds
http://www.medicalnewstoday.com/articles/290747.php
http://ofid.oxfordjournals.org/content/2/1/ofv004.full
http://www.pri.org/stories/2014-09-0...-mental-health
03-18-2015, 10:44 AM   #365
wildbill_52280
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Does anyone have concerns over fmt procedure? There are so many unknowns. We don't know what to expect, just hoping to get better. We can get worse; even unknowingly. For example, I have concerns over fmts effects on mental and neurological health. We know it can change them. Genetics play role on gi flora and how body handles the microorganisms. One's gut flora may make himself/herself healthy but can make another one sick or change him/her physically, mentally. We don't know how we are going to react to another one's microorganisms.

http://www.ucsf.edu/news/2014/08/116...rule-our-minds
http://www.medicalnewstoday.com/articles/290747.php
http://ofid.oxfordjournals.org/content/2/1/ofv004.full
http://www.pri.org/stories/2014-09-0...-mental-health
Yes a few people have become worse after FMT, and this may be related to donor selection/ donor health. More to learn, this is why lots of studies are planned through end of 2016. But with many studies already done, we can say with some confidence that we know something about FMT for its use in crohn's disease, most of the time, it helps dramatically. the potential of developing a new disease is there and has occured, although very rare and that was in c. difficile patients that had FMT, not IBD patients. There was also the recent event a c. difficile patient developed obesity after fmt from a donor that was overweight.

Last edited by wildbill_52280; 03-19-2015 at 09:27 AM.
03-18-2015, 01:34 PM   #366
7vNH
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Yes a few people have become worse after FMT, and this may be related to donor selection/ donor health. More to learn, this is why lots of studies are planned through end of 2016. But with many studies already done, we can say with some confidence that we know something about FMT for its use in crohn's disease, most of the time, it helps dramatically. the potential of developing a new disease is there and has occured, although very rare and that was in c. difficile patients that had FMT, not IBD patients.
I am usually very critical of how some of these studies are structured, but was pleased to see that in the recent pediatric study we have been talking about here, they did a before and after gut microbiome "fingerprint" to ascertain if the old microbiome was replaced, or if it reasserted itself. The entire cohort might be used to see if getting a new micribiome has any statistically relevant correlation to negative outcomes.

With respect to what bad outcomes are possible, and maybe some of those are subtle, I did think a bit about that. My decision was to go on chemicals that would compromise my immune system, or give it a try on the immune system improvement side. There were so many cases where the maintenance of the disease with existing therapies was a constant downhill slide, and I'm not that old, so if I went and knocked down my immune system, I'd hit bottom. And with so many documented C.Diff cases with basically no really bad outcomes, it was an easy decision for me; when a very bad outcome is on the horizon with the traditional approach, a new solution that appears safe, but not all is known, looks much better.
03-18-2015, 01:54 PM   #367
7vNH
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So I considered the information you suggested and did some more information and found this.
http://www.ncbi.nlm.nih.gov/pubmed/6502368

It doesn't mean that wheat is bad for humans though, just means that wheat might be bad for those with small intestinal issues. I'm wondering if this relationship isn't similar to other foods that affect other symptoms of IBD, like lactose and sucrose and select polysacharides which is all the basis for the specific carbohydrate diet. not in the sense that they all stimulate antibodies, but in the sense that they influence certain symptoms. There is good reason that all of these relationship between food and certain diseases symptoms are related to the bacteria in the gut. This is another reason why restoring the missing bacteria with fecal transplant is planned for the use in many diseases, there are FDA studies for FMT in diabetes and autism, and some reports of recovery from ALS and multiple sclerosis.
Celiac, aka small intestine issues, is the worst way that a gluten sensitive individual is effected. Continual exposure to those proteins over a time span can manifest into symptoms that are recognized by tradition medicine practitioners. But others may also be reacting to gluten (ie an immune response), that is not manifested in the small intestine. There seem to be many cases where going gluten free had a huge positive effect on a wide variety of diseases., as you say. Now that more detailed gluten sensitivity tests are available, the research community will be able to better connect the dots. My guess is that in the future we will use someones genetics plus gut microbiota profile and maybe exposure to a pathogen will have some predictive power for disease susceptibility. You can't change genetics, but you can control gene expression to some extent, and once we learn how, we will be able to purposefully manipulate the gut bugs. And also we are getting better at finding pathogens (ie MAP virus). The future is bright, if you can live long enough for the research to be done.
03-18-2015, 09:47 PM   #368
Lady Organic
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I found this Prebiotic formula for US and canada: Prebiotin : https://www.prebiotin.com/product/bone-health/

40$+ free shipping for 288g.
What do you guys think?
This is the one enriched with calcium and Vit D (the one I'd take).
I wonder from what plant the inulin is extracted and if it is organic?
I'll try to call tomorrow to inquire.
__________________
''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).
03-18-2015, 10:30 PM   #369
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consider adding sunchoke/Jerusalem artichoke and dandelion greens as excellent sources of inulin. or cold baked potatoes as an excellent form of resistant starches which are super foods for bacteria. add gradually though as metabolism of these prebiotic forms by bacteria do produce a bit of gas.
03-19-2015, 10:15 AM   #370
wildbill_52280
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This is an interesting article

Because the safety of FMT has not been fully established, FMT anarchy is a problem from a public health perspective. DIY instructions are available online on websites such as The Power of Poop, but armchair practitioners still risk conducting FMT using poorly screened fecal specimens, suboptimal techniques and unhygienic equipment.

The status quo should also be disconcerting to the scientific community, which has been forced by the FDA to watch an abundance of potential DIY patient data pass by.

Given this uncertainty, it may be worthwhile to develop a network of supervised FMT clinics that bypasses regulatory requirements. Although far from being directly analogous, the concept of sites for supervised heroin injections could serve as a model for such a system.

Supervised FMT clinics could provide DIYers with educational resources and instruction on proper technique, while serving as access points through which people can obtain screened and standardized fecal specimens
http://www.gastroendonews.com/ViewAr...d=1160&tab=RSS
03-19-2015, 10:36 AM   #371
wildbill_52280
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WOW! Here is one reason why bacterial changes may not be the full story on IBD, and why trying to make a synthetic Fecal Transplant Pill may not fix everything in IBD. We may the need the full natural flora that includes all microorganisms that may be essential to health.
http://www.sciencedirect.com/science...92867415000033
03-24-2015, 11:58 PM   #372
wildbill_52280
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FMT wasn't used for IBD, but this is just a touching story.

Biomed Rep. 2015 Mar;3(2):173-175. Epub 2014 Dec 15.
Pediatric severe pseudomembranous enteritis treated with fecal microbiota transplantation in a 13-month-old infant.

Abstract
Fecal microbiota transplantation (FMT) is a procedure used to restore the intestinal microbiota of a diseased individual using indigenous intestinal microorganisms from a healthy donor. The current case report presents the first case of a 13-month-old male with severe pseudomembranous enteritis (PME) treated with FMT. The infant was admitted to Shanghai Children's Hospital with a 2-month history of diarrhea, and a 1.5-month history of retractable edema, hypoalbuminemia, electrolyte disturbance and malnutrition. Besides necessary nutritional support, the patient was treated twice with oral metronidazole combined with or without vancomycin. Diarrhea was partially remitted. However, the infant had bloody or dark-green feces, and a distended abdomen. On day 96 from the initiation of the disease, a single FMT via a nasal jejuna feeding tube was performed. From day 2 until 4 months post-FMT, the patient presented with no diarrhea, normal feces and a satisfactory weight. To the best of our knowledge, this is the first pediatric PME treated with FMT. The current data show that FMT is an efficient choice for recurrent clostridium difficile infection and PME in adults and a few pediatric cases. Due to a lack of safety and effectiveness data, treatment should be cautiously applied in the pediatric population.
03-25-2015, 01:38 PM   #373
wildbill_52280
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Link between lifestyles of indigenous communities, gut microbial ecologies discovered
"In our study, we show that these lost bacteria are in fact multiple species that are likely capable of fermenting fiber and generating short chain fatty acids in the gut. Short chain fatty acids have anti-inflammatory properties. This raises an important question, could these lost Treponema be keystone species that explain the increased risk for autoimmunce disorders in industrialized people?
http://www.sciencedaily.com/releases...0325132615.htm
03-25-2015, 07:56 PM   #374
Lady Organic
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Clinical, microbiological, and immunological effects of fructo‐oligosaccharide in patients with Crohn's disease:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856087/

From the research:
Patients received 15 g/day of FOS (Prebio 1; Nestlé, Switzerland) for consumption as a dietary supplement for three weeks. FOS contained a mixture of oligofructose (70%) and inulin (30%) provided in 15 g sachets to be dissolved in water or food.

I just bought Prebiotin : http://www.prebiotin.com/product/bone-health/
03-26-2015, 09:39 PM   #375
7vNH
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Clinical, microbiological, and immunological effects of fructo‐oligosaccharide in patients with Crohn's disease:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856087/

From the research:
Patients received 15 g/day of FOS (Prebio 1; Nestlé, Switzerland) for consumption as a dietary supplement for three weeks. FOS contained a mixture of oligofructose (70%) and inulin (30%) provided in 15 g sachets to be dissolved in water or food.

I just bought Prebiotin : http://www.prebiotin.com/product/bone-health/
The ingredients say "oligofructose enriched inulin", which makes me wonder how much the inulin has been enriched. The oligosaccharides are made, I think, from culturing milk with specific bacteria (ie not cheap to make), wheras inulin can be extracted from chicory (ie cheap to make). I'd rather take the various ingredients separately myself, so I know more precisely what I was getting, and not getting stuff I don't need or want. But maybe these folks have found the magic ratio of these ingredients.
03-26-2015, 10:40 PM   #376
Lady Organic
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they've told me Prebiotin is from chicory root. At this time, i am more comfortable taking vegetal extract, as I no longer consume animal milk products. I cant find on Bimuno website the ingredients they use.

On Bimuno website, I found only this explanation: '' Fortunately, prebiotics can be extracted and concentrated from these natural sources. Examples include inulin from chicory and FOS (Fructo-oligosaccharides) which can either be extracted from plant sources or produced commercially.

A newer much more advanced form of prebiotics is now also available known as GOS (Galacto-oligosaccharides). GOS prebiotics are produced by combining the sugars present in milk in a way that mimics the structure of highly beneficial prebiotics naturally present in mother’s milk.''

but I cant find anywhere where they list the later ingredient in the composition of their products...?
03-30-2015, 09:55 AM   #377
7vNH
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The inulin in Prebiotin would most likely come from chickory root, that sounds about right. As confirmed by your quote from the Bimuno site, FOS products (but not Bimuno) are derived from plants, whereas GOS products are made starting with milk sugar. You could look and see if you could find the GRAS (generally regarded as safe) application for Prebiotin, that might tell you more.

I think that all the GOS products (not FOS, like Prebiotin) start with food-grade lactose, which is manufactured from sweet whey (a by-product during the manufacture of cheese). Then they use an enzyme (beta-galactosidase) to catalyze the transgalactosylation reaction. And although they all start out with lactose, the various manufacturers might use different microorganisms (bifodobacterium bifidum, bacillus circulans, sporobolomyces singularis, etc) to get the enzyme. That effects the fractions of mono, di, tri, and higher saccharides as well as the degree of polymerization and beta configurations.

I just bought more Bimuno for myself. I was wrong about the price before. I bought a 9 month supply (to save on shipping from the UK) and it came to $0.37/day. I'm not sure it's doing anything good for me, but it was recommended by folks I trust, so it's cheap insurance.

And finally, the link back to this FMT thread, for those that are skimming this stuff, is that there is a theory that one may alter the composition of the gut microbiota towards a healthier composition by feeding the good "bugs" something they like to eat. So if you do any kind of FMT, whether from the top or bottom, it might be wise to give those new good bugs something they like to eat.
04-06-2015, 01:50 AM   #378
wildbill_52280
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I didn't think i experienced any benefits from my last fecal transplant attempt, but i actually gained 5 more pounds since december! I'm still on the same caloric intake and physical activity levels. Haven't weighed this much in 7 years. In total i gained 15 pounds in about 6 months without doing anything except FMT. haha I dont regret drinking it!! cant wait to improve upon my protocol for the next FMT!
04-06-2015, 02:34 AM   #379
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Bill that's really encouraging. Sounds like it needs time to work and not just immediate results. Thanks for keeping us informed.
04-06-2015, 10:56 AM   #380
wildbill_52280
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Bill that's really encouraging. Sounds like it needs time to work and not just immediate results. Thanks for keeping us informed.
Yes time and also the donor has to follow a strict diet so it increases the quantity of the bacteria I need to control inflammation. if you read the first post and all the studies that have been done so far some cases have taken very little time at all to turn around, until we get a consistent quantity of bacteria in an FMT like a pill for example, the results will be more consistent as well.

EDIT: it is almost entirely certain that I replaced some bacteria in my gut that had been missing since taking antibiotics in 2008 right before my health declined, and it is helping to extract more energy/calories from my food, which is helping me maintain a normal weight.

Last edited by wildbill_52280; 04-06-2015 at 02:40 PM.
04-06-2015, 11:03 AM   #381
wildbill_52280
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Fecal transplants getting more press.

http://on.aol.com/video/the-future-o...ants-518748792
04-06-2015, 01:02 PM   #382
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I for one so appreciate your efforts and info on this thread, Bill, that it does give me hope. for some reason I really feel there is now a silver lining in the stormy skies for people like me. I genuinely believe it is the way forward. they are also looking to FMT for diabetes, motor neurone and MS. I really believe, as 75% of the immune system is in the gut lining, that we need better gut flora. I'm so sure this will cure us and allow us out our houses and to do what normal people take for granted.

Thanks so much for all the info. And the best of luck with your own travels with FMT.
04-07-2015, 09:31 PM   #383
wildbill_52280
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A testimony of a guy who did a fecal transplant. he also says he developed UC after antibiotic in 2008, which is how I also seemed to develop crohn's.

https://www.youtube.com/watch?v=B8-2Fcy-d18
04-09-2015, 03:52 PM   #384
mf15
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Ok here is something brand new, and not good on FMT, sad. At least for UC.

Cannot get the paper but can get supplement info which pretty much tells the whole story.

I cant help but wonder if the donor stool prep kills off important anaerobes.

These 3 people got up to 30 rounds of FMT, but all relapsed eventually.
But while taking the FMT, were doing well.

Old Mike

Serial Fecal Microbiota Transplantation Alters Mucosal Gene Expression in Pediatric Ulcerative Colitis

Came out this AM.



here is the supplement link just click on the doc

http://www.nature.com/ajg/journal/v1...g201519s1.html

Last edited by mf15; 04-09-2015 at 04:30 PM.
04-09-2015, 06:09 PM   #385
wildbill_52280
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Ok here is something brand new, and not good on FMT, sad. At least for UC.

Cannot get the paper but can get supplement info which pretty much tells the whole story.

I cant help but wonder if the donor stool prep kills off important anaerobes.

These 3 people got up to 30 rounds of FMT, but all relapsed eventually.
But while taking the FMT, were doing well.

Old Mike

Serial Fecal Microbiota Transplantation Alters Mucosal Gene Expression in Pediatric Ulcerative Colitis

Came out this AM.



here is the supplement link just click on the doc

http://www.nature.com/ajg/journal/v1...g201519s1.html
Thanks!! I will read this later when I have time, but for now I would like to say in this thread we are always interested in examining any evidence of fmt, whether it contradicts or supports the theory that it could cure the disease, as in any issue, we will have evidence that seems to support and contradict certain facts, and we sort it all out to hopefully get to the truth of the matter. and just a reminder, in the beginning of the thread there are 2 cases of both forms of IBD that have been 100% free of IBD symptoms ranging from 13-25 years post FMT, as reported in medical journals by top researchers in the field of scientific medicine.
04-13-2015, 11:57 AM   #386
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Has anyone ever heard of a FMT used following anti-MAP treatment? It seems to me a FMT would be useful in preventing re-infection, provided the bacteria hold.
04-13-2015, 09:02 PM   #387
wildbill_52280
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Has anyone ever heard of a FMT used following anti-MAP treatment? It seems to me a FMT would be useful in preventing re-infection, provided the bacteria hold.
In alot of these studies they give antibiotics to the patient before hand to suppress/eliminate the existing microbiome which will have lots of bad bacteria. Its doubtful if its the same antibiotics that would be used for anti-map therapy though, but this is similar strategy to what you are suggesting, which is killing the existing bad bacteria before restoring the good bacteria with an FMT. It probably help the new bacteria take hold in the gut although I don't recall any specific studies that tried to answer this question. Perhaps antibiotics before hand aren't necessary, but i believe only when we have a fecal microbiota transplant pill will we get to that point because when the desired bacteria is in a high enough concentration, all the pathogens would likely be obliterated anyway.

Last edited by wildbill_52280; 04-13-2015 at 10:33 PM.
04-14-2015, 07:50 AM   #388
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My understanding of this is limited, but I think that MAP may give the bacteria from any FMT a more difficult time in colonizing the ileum, and that removing MAP specifically may see better results from FMT, at least in those of us with Crohn's in the ileum.
04-14-2015, 01:44 PM   #389
wildbill_52280
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My understanding of this is limited, but I think that MAP may give the bacteria from any FMT a more difficult time in colonizing the ileum, and that removing MAP specifically may see better results from FMT, at least in those of us with Crohn's in the ileum.

So far it seems IBD GI microbiome is very resistant to being corrected with a fecal microbiota transplant when compared to doing FMT for C. Difficile infection. Maybe one of the reasons is because of the type of pathogens that we harbor may be different like Intracellular MAP or AIEC, or perhaps just because there tends to be more inflammation involved with IBD.
04-16-2015, 05:55 AM   #390
sir.clausin
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This is EXACTLY what I´m planing to do.

1) AntiMAP-therapy - antibiotics
2) FMT

Results? Hopefully very good

Why? Because of this:
_____________

Dear Sebastian

XXX remounted the path block which had been displaced in the post to us and it went fine.

We ran the MAP test on the 2 skin biopsies obtained from your left lower leg (DDC1103/13 and DDC2083/13)

and the one from your scalp (522/13) and examined them today.

Result:

In the leg samples MAP infection was widely present in cells of the epidermis with scattered sub-epidermal foci.

The appearances in both biopsies were very similar.

In the scalp sample MAP infection within cells in the epidermis and sub-epidermis was conspicuous and much more prominent

than in the leg. Involvement of hair follicles and what looked like sebaceous glands was also seen.

Conclusion:

Together with my previous report (below) on your gut biopsies, this indicates you had a severe MAP infection of your gut

with systemic dissemination and metastatic skin involvement.
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