12-23-2015, 10:32 PM   #631
wildbill_52280
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I found the article that mentioned a trial of FMT pills for crohn's. New York Times Nov 15, 2015.
http://www.nytimes.com/2015/11/10/he...able.html?_r=0

Dr. Jessica R. Allegretti, a physician at Brigham and Women’s Hospital in Boston, is putting together trials of the capsules against Crohn’s disease, obesity and primary C. difficile.
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http://www.crohnsforum.com/showthread.php?t=52400
01-08-2016, 02:47 PM   #632
wildbill_52280
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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.

Last edited by wildbill_52280; 01-08-2016 at 03:06 PM.
01-08-2016, 03:04 PM   #633
wantok
 
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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.
01-08-2016, 03:11 PM   #634
Spooky1
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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.
01-08-2016, 03:23 PM   #635
wantok
 
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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.
01-08-2016, 03:29 PM   #636
Spooky1
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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.
01-08-2016, 03:35 PM   #637
wantok
 
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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.
01-08-2016, 04:26 PM   #638
Lady Organic
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Thanks for the update Wildbill. have you monitored with fecal calprotectine?
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''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: 50mg 6-MP (Purinethol)+ B12 shots


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 (pill, rectal), cortifoam, Imuran, Purinethol, methotrexate.
01-09-2016, 02:29 PM   #639
jayann
 
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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
01-09-2016, 08:41 PM   #640
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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/...colitis&rank=3
01-11-2016, 12:44 PM   #641
wildbill_52280
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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/s...ammatory-bowel

https://www.nestlehealthscience.com/...-collaboration

Last edited by wildbill_52280; 01-11-2016 at 01:02 PM.
01-11-2016, 11:25 PM   #642
Christi
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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
01-12-2016, 12:01 AM   #643
wildbill_52280
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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
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.

Last edited by wildbill_52280; 01-12-2016 at 03:53 PM.
01-19-2016, 10:38 PM   #644
wildbill_52280
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related article to microbial diversity and fecal transplants.
http://www.thenakedscientists.com/HT...rview/1001647/
01-19-2016, 10:52 PM   #645
wildbill_52280
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Article related to gut microbiota and arthritis.

http://www.theatlantic.com/health/ar...he-gut/383772/
01-20-2016, 09:18 AM   #646
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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.
01-20-2016, 09:50 AM   #647
ppk
 
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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.
01-20-2016, 10:18 AM   #648
Spooky1
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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,
01-20-2016, 11:56 AM   #649
Eridon2002
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[QUOTE= Also, after the FMTs, I was able to eat certain FODMAPs like onions and garlic, which I couldn't tolerate at all before.[/QUOTE]

I would go through FMT just to be able to eat onions and garlic again. I miss them!
01-20-2016, 01:34 PM   #650
ppk
 
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I would go through FMT just to be able to eat onions and garlic again. I miss them!
I must say - it is very nice to be able to eat lots of healthy/delicious veggies again!
01-21-2016, 10:57 AM   #651
Spooky1
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I always loved fruit and veg and miss them badly. Actually I would give anything to eat anything and everything.
01-21-2016, 11:05 AM   #652
ppk
 
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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.
01-23-2016, 10:01 AM   #653
wildbill_52280
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@9:00 Thanks Rob Knight, but the whole video is great.
https://www.youtube.com/watch?v=M5KlhCKMmK8
01-28-2016, 01:29 PM   #654
wildbill_52280
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Our data reveal that mice recovering from antibiotic treatment or C. difficile infection retain lingering signatures of inflammation, despite compositional normalization of the microbiota, and host responses could be rapidly and durably relieved through fecal transplant.
http://www.cell.com/cell-reports/abs...247(16)00029-2
02-07-2016, 07:24 AM   #655
jayann
 
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@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
02-08-2016, 04:48 AM   #656
Spooky1
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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.
02-08-2016, 11:56 AM   #657
wildbill_52280
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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.
02-09-2016, 01:54 PM   #658
wildbill_52280
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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."
02-09-2016, 01:59 PM   #659
wildbill_52280
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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/2016-0...effective.html
http://www.serestherapeutics.com/pipeline/ser-109
02-09-2016, 03:21 PM   #660
wildbill_52280
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sorry about the double post above, my computer was acting up.
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