07-01-2015, 08:16 AM   #511
mf15
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They finally released the whole paper on this FMT trial.
I find it most interesting that they used autologous FMT as a control.
Placebo effect a possible, shift in bacteria population in wrong direction yet still some remissions, what's really going on.
Old Mike
http://www.gastrojournal.org/article...448-5/fulltext
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07-01-2015, 02:53 PM   #512
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Had my one year FMT anniversary yesterday. No complaints. Granted, I was never too bad off to begin with, but 1 year later I feel pretty well, no meds except for VSL3. Still gurgle a lot, still have to be careful with the diet, but I rarely if ever have pain, no diarrhea, less gas, and though careful with diet, it is more inclusive than it used to be. I still every now and then if I go overboard may get some increased gas and a bit of urgency, but nothing too bad. My GI thinks those minor symptoms are more IBS related than anything else. My gut will always be hypersensitive to a point.

I was part of a study, and they were crystal clear they think FMT is useful for some IBDers, but that a NON family member should be used in order to introduce a whole new ecosystem and environment. Last fecal cal 7 mos ago was 37, last scope several months ago was normal.

I do NOT consider myself cured by any means. I like to think of myself as healed, at least for now. I always feel like I'm one step away from being back Crohns land. If/when it does- I would do FMT again.
07-01-2015, 03:34 PM   #513
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baistuff, did you do enemas and how many? or nasogastric tube?

I only did one DIY FMT drinking a solution and I gained 15 pounds so I'm a normal weight and other symptoms are about 15% reduced. I believe some bacteria have been restored but a better performed FMT will restore more missing bacteria. The bacteria we need to restore are about 15% of a donors stool sample maximum, so if they don't follow a strict high fiber diet, Patient dosage will be very small and may not be enough.
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07-02-2015, 07:35 AM   #514
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Baistuff, that's amazing that you are off of meds and have good reports! What doctor are you using? Where is he/she located?
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07-02-2015, 09:04 AM   #515
baistuff
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I did the FMT as part of a clinical trial. It was done via colonoscopy. The prep, the scope was really no different than any other. No antibiotics, no diet change beforehand. At the time I was on Uceris and doing pretty well. In fact, though biopsies were not done during that scope, grossly the scope at the time of FMT didn't look all that bad. I was given immodium right afterwards. Held on to the transplant for a couple of hours.

I was actually then constipated for 3 days, but with great appetite and passing gas, so had no real worries. Had a couple days of a few odd looking stools, but then slowly over time felt like I was "normalizing." I still can't do dairy other than aged cheeses, and I still don't overdue the carbs- especially guten, but my tolerance of them has really improved. I had a scope 3 months later as part of the trial, and it was normal. Labs 6 months later all normal, including a fecal cal. Only on VSL3.

I cannot say where it was done b/c the trial is still ongoing. I still have my own GI who had no issue with me trying it.

I want folks to keep in mind that I never had terrible disease like many on this board. Mucosal, inflammatory, right sided colitis. No small bowel involvement. No strictures/fistulas. my IBD started after a course of antibiotics and my symptoms clearly had a dysbiosis connection.

My GI thought if ever there was a candidate for FMT I would probably be a good one.

Again, I am NOT cured. Simply healed- for now. I am afraid of dairy, avoid cereals, pasta, breads. I can do corn again which is great, and small amounts of gluten, but too much and I get reminders I'm not home free.

To me FMT is like any other treatment. Some respond amazingly well, others meh, others not at all. Just learned a colleage has had crohns for 25 years. She has been on 5ASA and never anything more. Responded great and has never looked back-eats everything. Others as we know are quite the opposite.

We have to find what works for us. I believe in FMT, but will not call it a miracle cure by any means.
07-02-2015, 10:53 AM   #516
wildbill_52280
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We have to find what works for us. I believe in FMT, but will not call it a miracle cure by any means.
Thanks baistuff, I understand this is your opinion, but you should review all the evidence on FMT on the initial post of this thread and you'll see there is much more to this. Oral routes of administration have been pretty dramatic compared to enemas or colonoscopic routes. It's only unreliable because we have so little control over the dosage of bacteria patients receive, and doing FMT is a laborious task to co-ordinate. When we get a fecal transplant pill, that's when you will see better and consistent results I believe.
07-02-2015, 11:02 AM   #517
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Thanks baistuff, I understand this is your opinion, but you should review all the evidence on FMT on the initial post of this thread and you'll see there is much more to this. Oral routes of administration have been pretty dramatic compared to enemas or colonoscopic routes. It's only unreliable because we have so little control over the dosage of bacteria patients receive, and doing FMT is a laborious task to co-ordinate. When we get a fecal transplant pill, that's when you will see better and consistent results I believe.


You may be right. Like I said, I believe in it and consider mine a success, but there are a lot of moving parts to take into account. Agree about route of administration- could be a key to success. Look forward to more data on it
07-02-2015, 12:36 PM   #518
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It's only unreliable because we have so little control over the dosage of bacteria patients receive, and doing FMT is a laborious task to co-ordinate. When we get a fecal transplant pill, that's when you will see better and consistent results I believe.
I'm quoting myself because its fun!!
I just read an article released that supports my views.

"In addition to screening for infections and disease, donors that harbour an abundance of the beneficial bacterial groups identified in our study could be selected to increase the chances of success of transplantation," said Verdu.

McMaster researchers test fecal transplantation to treat ulcerative colitis.
This study used 75 patients and found greater changes IN Fecal Transplant group over placebo group.
http://www.eurekalert.org/pub_releas...-mrt070215.php
07-04-2015, 12:00 PM   #519
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Wild Bill,

GREAT information! You've really covered the topic.

About 2 years ago when fecal transplants were approved by the FDA for C. Diff, I asked my GI if she would do one for me but she refused. She would do it for C. Diff which I didn't have at the time. I have had but then it was treated with Vancomycin, and it happened to work. Since C. Diff has a tendency to recur, I hoped she would do it for Crohn's since I've had C.Diff, but no deal.

Since then I have learned about much of the research being done on the Microbiome. Wow!!! is that interesting.

You might be interested in an online course through the University of Colorado and the Knight Lab that was there researching the Microbiome. Very informative about the critters that live with us. BTW the Knight Lab has moved in 2015 Univ of Calif (UCSD) to work with other researchers in the area.

Coursera--Microbiome: Exploring your Gut. I don't recall if that is the exact title, but I think if you google it, you'll find it. It's free. You can monitor it or take it for a certificate. The course is available on demand now so can be started at any time. One of the interesting things that was mentioned is that Crhon's patients are missing certain microbes.

With additional research I learned that IBD patients have more of some harmful microbes and less of the helpful ones. There are microbes that digest fiber and make short chain fatty acids (SCFA). One SCFA is butyrate. It is important for the colonic cells lining the gut. Our good microbes also make Vitamin K and some B vitamins and provide some calories.

Since I couldn't restore my gut with a fecal transplant I've been working to delvelop a healthy set of microbes in my gut by diet and probiotics.

I have been on VSL#3 DS(2 sachets daily) and two capsules of S. boulardi
Since Sept. It is July (10 months later) and I have not had symptom 1.

I'm working to nourish my good microbes by cutting out unhealthy processed food that nourishes the bad guys and eating more fibrous foods like fruits and vegetables and healthy oils and proteins. So far, so good!

Books I recommend are:

1- Inside Tract and 2- The Gut Balance Revolution both by Gerard Mullin from Johns Hopkins, --

Follow Your Gut: The Enormous Impact of Tiny Microbes by Rob Knight

Missing Microbes by Martin Blaser

Honor thy Symbionts and Eat Bugs. Not Too Much. Mainly With Plants both by Jeff Leach.

Then, of course, google, google, google. There's so much out there!!

Again, Thanks Wild Bill for great info on transplants and best of luck to everyone out there with any IBD problem. Keep searching for your solution.
07-08-2015, 11:06 AM   #520
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Here's more reasons why the donor diet must be good for the successful transfer of butyrate producing bacteria. And why FMT efficacy has not been more consistent.

Another study[14] explored what would happen if a group of African Americans in Atlanta swapped diets with a group of rural black South Africans. The investigators were curious to see whether dietary differences could help explain the drastically differing rates of colon cancer between the two populations (65:100,000 in African Americans vs < 5:100,000 in rural South Africans). The South African diet was high in fiber and prebiotics, while the American diet was much higher in junk food, refined carbohydrates, and animal fats. Within 14 days of switching to the South African diet, healthy butyrate-producing microbial species increased by 258% in the American population. Butyrate is a byproduct of bacterial fermentation in the colon and is thought to protect against colon cancer.

Dr Deans then mentioned the recent media coverage of a geneticist who put his son on a 10-day all-McDonald's diet and measured his microbiome before and after. It was found that the son reduced the diversity of his microbial species by 40%, as assessed by three different labs. (In all fairness, he was restricted to burgers and fries and not the healthier options that McDonald's offers.)
http://www.medscape.com/viewarticle/847304_8

Last edited by wildbill_52280; 07-11-2015 at 10:22 PM.
07-10-2015, 05:04 PM   #521
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https://www.youtube.com/watch?v=1LtXIiy3TF0
07-15-2015, 10:39 PM   #522
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Use of a Novel Diet (UC DIET) Targeting the Microbiota for Treatment of Mild to Moderate Active Pediatric Ulcerative Colitis: An Open Label Pilot Study

https://clinicaltrials.gov/ct2/show/...ate+IBD&rank=5

and
https://clinicaltrials.gov/ct2/show/...ate+IBD&rank=4

''we have postulated that a diet that we developed that reduces exposure to dietary ingredients that allow sulfide reducing bacteria to thrive, or that impair the mucous layer, coupled with dietary products that enhance butyrate production, could induce remission in UC without involving additional immune suppression.''
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07-15-2015, 11:20 PM   #523
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Seems like this Dr Arie Levine from Israel is quite interested in diet, the microbiome and FMT. Here'S a full list of the trials he is involved in, one includes FMT for UC and UC-like Crohn's : Yeah thats me!!! (in partnership with several countries, including, Toronto, Canada.):

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

and his research papers on diet:

http://www.ncbi.nlm.nih.gov/pubmed/?...ie+levine+diet
07-16-2015, 10:35 AM   #524
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Scratch what I originally posted. The more I research this the more sources conflict on what bacteria we are actually having problems with.

While some have deficient bacteroidetes or firmicutes, others are higher.

http://taymount.com/all/study-ulcera...tis-crohns-fmt

Now I see this.

While bacteria seem to play a role it's interesting that it fluctuates so much in the highs and lows between patients with the same conditions.

Maybe their symptoms are different though? I've seen studies suggesting firmicutes dominant crohns is constipated and bacteroidetes dominant is diarrhea.
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Last edited by InstantCoffee; 07-16-2015 at 12:09 PM.
07-16-2015, 01:48 PM   #525
wildbill_52280
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Scratch what I originally posted. The more I research this the more sources conflict on what bacteria we are actually having problems with.

While some have deficient bacteroidetes or firmicutes, others are higher.

http://taymount.com/all/study-ulcera...tis-crohns-fmt

Now I see this.

While bacteria seem to play a role it's interesting that it fluctuates so much in the highs and lows between patients with the same conditions.

Maybe their symptoms are different though? I've seen studies suggesting firmicutes dominant crohns is constipated and bacteroidetes dominant is diarrhea.
We have pretty good information so far supporting the idea that clostridial species that regulate inflammatory process are the crucial issue in IBD. But since there are like 1000 different species or more and many seem to have similar properties and dominate different section of the GI tract, its pretty complex and we have to abandon reductionist frameworks because the small parts seem to add up to a greater whole. To effectively supress inflammation we need the cooperation of multiple bacteria. But then it gets even more complex when you consider the types of pathogens that have taken over the gut so that can get pretty diverse as well. In crohn's AIEC and MAP seem to play a large role of the pathogens the promote and sometimes thrive off of byproducts of inflammation. There needs to be a pre existing inflammatory process for some of these bacteria to thrive, its not coincidence the produce molecules that upregulate the inflammatory response as well to promote their own survival. It's like the circle of life you know we eat food and our excrements also encourage more plants to grow we can eat more for and so on and so forth.

Last edited by wildbill_52280; 07-16-2015 at 02:13 PM.
07-16-2015, 02:32 PM   #526
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Hey, it's this guy again!!!

http://sfbay.craigslist.org/sfc/vol/5124735266.html
07-16-2015, 02:32 PM   #527
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I think it seems increasingly likely that something is causing a targeted death of the bacteria we need, as we know there's a codependency among bacteria cross-feeding etc. and most of them rely on the same resources (resistant starches).

I think the theories involving protease and/or oxidation support this kind of targeted death.

The role of AIEC and MAP is still interesting to me because we don't know if it's the chicken or the egg still. While treating with antibiotics may be able to put someone in remission, the question remains if these bacteria caused the imbalance, then caused the symptoms, or if the imbalanced caused the bacteria that caused the symptoms preventing the gut from naturally rebalancing itself.
07-16-2015, 04:20 PM   #528
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Seems like this Dr Arie Levine from Israel is quite interested in diet, the microbiome and FMT. Here'S a full list of the trials he is involved in, one includes FMT for UC and UC-like Crohn's : Yeah thats me!!! (in partnership with several countries, including, Toronto, Canada.):

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

and his research papers on diet:

http://www.ncbi.nlm.nih.gov/pubmed/?...ie+levine+diet
Hi Organic Girl,

Impressive list of studies. I thought one of use of Modulen IBD- Turns out it is by Nestle. Did a little investigating. Found this. http://www.scdrecipe.com/blog/archiv...le-modulen-ibd

If this is really the ingredient list, I'm wondering how it can work.

jayann
07-16-2015, 04:49 PM   #529
jayann
 
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Seems like this Dr Arie Levine from Israel is quite interested in diet, the microbiome and FMT. Here'S a full list of the trials he is involved in, one includes FMT for UC and UC-like Crohn's : Yeah thats me!!! (in partnership with several countries, including, Toronto, Canada.):

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

and his research papers on diet:

http://www.ncbi.nlm.nih.gov/pubmed/?...ie+levine+diet
Hi Organic Girl,

Impressive list of studies. I thought one of use of Modulen IBD- Turns out it is by Nestle. Did a little investigating. Found this. http://www.scdrecipe.com/blog/archiv...le-modulen-ibd

If this is really the ingredient list, I'm wondering how it can work.

jayann
07-16-2015, 04:52 PM   #530
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Use of a Novel Diet (UC DIET) Targeting the Microbiota for Treatment of Mild to Moderate Active Pediatric Ulcerative Colitis: An Open Label Pilot Study

https://clinicaltrials.gov/ct2/show/...ate+IBD&rank=5

and
https://clinicaltrials.gov/ct2/show/...ate+IBD&rank=4

''we have postulated that a diet that we developed that reduces exposure to dietary ingredients that allow sulfide reducing bacteria to thrive, or that impair the mucous layer, coupled with dietary products that enhance butyrate production, could induce remission in UC without involving additional immune suppression.''
This is info from Nestle about Modulen IBD. I'd be curious if any patients have been successful with it. There are a lot of vitamins and so forth, but is it really good nutrition?
https://www.nestlehealthscience.co.u...ulen%20ibd.pdf
07-16-2015, 07:36 PM   #531
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I know the list of ingredients is pretty repulsive, but it works in a great proportion of CD patients... before I tried Modulen IBD (only tried 2 days) I called Nestlé and complained about the poor choice of ingredients. The corn and maltodextrine is even from GMO! In the diet section of the forum, lots of threads discuss this topic and a lot of patients go into remission with these enteral diets. check it out. studies are abundant regarding this treatment, which is mostly offered to pediatric CD and very rarely in adults in America.
07-16-2015, 09:50 PM   #532
wildbill_52280
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I know the list of ingredients is pretty repulsive, but it works in a great proportion of CD patients... before I tried Modulen IBD (only tried 2 days) I called Nestlé and complained about the poor choice of ingredients. The corn and maltodextrine is even from GMO! In the diet section of the forum, lots of threads discuss this topic and a lot of patients go into remission with these enteral diets. check it out. studies are abundant regarding this treatment, which is mostly offered to pediatric CD and very rarely in adults in America.
It's because there is no fiber and so little other complex polysachriddes and this starves all the bad bacteria.
07-17-2015, 10:18 AM   #533
wildbill_52280
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Another craigslist ad for FMT, this time in philadelphia

http://philadelphia.craigslist.org/wan/5126838673.html
07-17-2015, 12:16 PM   #534
jayann
 
Join Date: Jul 2015
Location: Orlando, Florida
I know the list of ingredients is pretty repulsive, but it works in a great proportion of CD patients... before I tried Modulen IBD (only tried 2 days) I called Nestlé and complained about the poor choice of ingredients. The corn and maltodextrine is even from GMO! In the diet section of the forum, lots of threads discuss this topic and a lot of patients go into remission with these enteral diets. check it out. studies are abundant regarding this treatment, which is mostly offered to pediatric CD and very rarely in adults in America.
Organic Girl,

Can't knock it if it works. Did it put you in remission? How long were you on it? I might not like the HFCS but at least you don't have side effects like a depressed immune system that you get with biologics. That was a problem for me with Cimzia.

Once someone is in remission, they can work on building a healthy gut and microbiome.

I've always been able to go into remission with Prednisone. My doc doesn't like it and doesn't want me to be Prednisone dependent. I know it's not the best for you in the long run. I hope my probiotics continue to keep me in remission.

Thanks for sharing so much info. I still have to "digest" it all.

jayann
07-17-2015, 12:17 PM   #535
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It's because there is no fiber and so little other complex polysachriddes and this starves all the bad bacteria.
Good point, Wild Bill.
07-17-2015, 05:59 PM   #536
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Organic Girl,

Can't knock it if it works. Did it put you in remission? How long were you on it? I might not like the HFCS but at least you don't have side effects like a depressed immune system that you get with biologics. That was a problem for me with Cimzia.

Once someone is in remission, they can work on building a healthy gut and microbiome.

I've always been able to go into remission with Prednisone. My doc doesn't like it and doesn't want me to be Prednisone dependent. I know it's not the best for you in the long run. I hope my probiotics continue to keep me in remission.

Thanks for sharing so much info. I still have to "digest" it all.

jayann
Where do you see HFCS?

If there's HFCS in EN it's strictly off limits for me. It's not just unhealthy for me, I get very bad reactions to small amounts of it.

I'd rather just make my own shakes. I've been using an unflavored protein with milk and mixed vegetable oils and using honey as a sweetener.
07-18-2015, 12:33 PM   #537
jayann
 
Join Date: Jul 2015
Location: Orlando, Florida
Hi Instant Coffee,

Couldn't get the last link to work that I sent to Organic Girl, so found another. Lists Corn Syrup as 1st ingredient. (most likely HFCS) wouldn't you think? Or are they going to put Caro in there?? If you're allergic to corn or can't tolerate it for some reason. I don't think it is terribly nutritious, so wouldn't jump to take it. However, if I was having a flare, I might try it as it would only be temporary until flare ended. Then I'd go super nutritious. With this darn disease, you've got to do what you've got to do.

I noticed that on one sight it listed 17 countries where available, but US wasn't on the list. Why do you suppose that is? Can it be purchased by mail order from other countries?

http://www.nestle.co.za/brands/healt...es/modulen-ibd

Here's info from their website.
MODULEN® IBD
Modulen® IBD is a nutritionally complete formula suitable for oral and tube feeding, especially designed for the dietary management of Crohn’s Disease in paediatric (>5years) and adult patients.
INDICATIONS

In Crohn’s disease: As an alternative to steroid therapy during the active phase/As a supplement during the remission phase/As an adjunct to medical steroid therapy.

SPECIAL FEATURES:
Contains Transforming Growth Factor –ß2 (TGF-ß2) from patented manufacturing process. TGF-ß2 has natural anti-inflammatory properties to reduce inflammation associated with inflammatory bowel disease
Contains 25% of fat as MCT
Lactose and Gluten free
Fibre free
Meets the RDI for adult patients in 2000ml per day; for children the RDI is met per volume appropriate for age
Suitable as sole source of nutrition

DOSAGE RECOMMENDATIONS:

As directed by a health care professional
200g powder (24 scoops) + 850 ml water = 1000ml
50g powder (6 scoops) + 210 ml water = 250ml

INGREDIENTS

Corn syrup, casein, sucrose, milk fat, medium chain triglycerides, corn oil, emulsifier (soya lecithin), potassium citrate, calcium phosphate, sodium citrate, calcium carbonate, magnesium chloride, acidity regulator potassium hydroxide (e525), potassium chloride, vitamins: vitamin C, vitamin E, niacin (vit. PP), pantothenic acid (vit. B5), vitamin B6, thiamine, (vit. B1), vitamin A, riboflavin (B2), vitamin D, folic acid, vitamin K, biotin, vitamin B12, choline bitartrate, ferrous sulphate, zinc sulphate, magnesium oxide, manganese sulphate, copper sulphate, sodium molybdate, potassium iodide, chromium chloride, sodium selenate.

Modulen (400g powder)

Nurtitional Analysis UOM per 500ml per 1000ml
Energy kj 2070 4200
Protein g 18 36
Carbohydrate g 54 110
of which
Sugar g 15 30
Fat g 23 47
of which
-MCT g 6 12
Total fibre g 0 0
Vit A μgRE 420 840
Vit D μg 4,9 10
Vit E mgTE 6,5 13
Vit K μg 27 55
Vit C mg 47 97
Folic Acid μg 120 240
Vit B1 (Thiamine) mg 0,59 1,2
Vit B2 (Riboflavin) mg 0,64 1,3
Vit B6 mg 0,83 1,7
Vit B12 μg 1,6 3,2
Niacin mgNE 5,8 12
Pantothenic Acid mg 2,4 5
Sodium mg 170 350
Potassium mg 600 1200
Chloride mg 370 750
Calcium mg 450 910
Phosphorus mg 300 610
Magnesium mg 100 200
Copper μg 0,49 1
Zinc mg 4,7 9,6
Iron mg 5,4 11
Selenium μg 17 35
Chromium μg 25 51
Molybdenum μg 37 75
Manganese μg 0,98 2
Iodine μg 49 100
Biotin μg 16 32
Choline mg 35 72


USE UNDER MEDICAL SUPERVISION. Not for children under 5 years of age. Not for parenteral use. Gluten Free YES, Soy ingredients YES, Milk ingredients YES.
07-18-2015, 01:27 PM   #538
wildbill_52280
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Please my friends lets keep this thread focused on Fecal transplants and the microbiome, THANKS!!
07-18-2015, 01:38 PM   #539
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Another craigslist ad for FMT, this time in philadelphia

http://philadelphia.craigslist.org/wan/5126838673.html
How come this asks for one donation when others are saying you need several?
07-18-2015, 02:02 PM   #540
wildbill_52280
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How come this asks for one donation when others are saying you need several?
It's unknown how many you will need. Review the first post of this thread there is one experiment of a man who did an oral fecal transplant with nasogastric tube and achieved remission quickly without drugs afterwards. It seems an oral FMT has quicker results compared to enemas though.

One woman who is believed to be completely cured for 12 years did a large volume oral with nasogastric tube using 3 donors.

so from this information we can see that is within reality that one oral FMT is all you would need, but not gauranteed. but this has been my goal all along to develop a protocol to guaranty one FMT will provide a cure.

Last edited by wildbill_52280; 07-18-2015 at 04:56 PM.
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