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Fantastic article.

I remember an article I read a year or so back on the bacteria samples from asthma patients compared to normal kids... and the article opened with a FMT procedure. The ick factor was shocking at first, now I wish I could it lol.

Wish I knew of a donor with no issues, who was close enough to ask this of. I do REALLY hope they start doing this for IBS patients in a medical setting.
 

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It would be great if the medical field would really look into this, but they wont. Here is the thing, they do Not want to have a cure for IBS or any other chronic disease out there. They would stand to loose tons of money. Think about it, do you know that Gastroenterologists are the busiest specialists out there. They are overloaded with patients with gut issues( more than half probably have IBS symptoms). If they actually started implementing Fecal Transplants I am fairly certain a lot of people would start getting better. Another issue is that like Leo41 said, it is going to be very hard to find healthy donors as so many people are messed up in so many different ways. A lot of this is because of western diets and because of our Agricultural system and their continuous use of GMO's and pesticides. That as well as too many antibiotics being used in the foods we eat. I try and eat as organic as I can.

My best friends mom got a nasty case of C-diff while in the hospital recovering from surgery. She almost died! Her kidneys were shutting down and she almost had sepsis. MY friend inquired about the FT and the hospital said No. They said they do not do this( and this is a Big hospital here where I live). They said there is only one or two hospitals that will offer it, but that is only if a person has failed the Big gun antibiotics three times!! It is very maddening because they know damn well that the Vancomycin they are pushing down people is going to even screw their guts up way more, but they would rather do that than offer a procedure that would likely cure them and would not have the devastating consequences that the Vancomycin will have.

I would not hold out too much hope on the AMA and FDA passing the use of FTs anytime in the near future. It is sad, but our country is run off of greed. Our best interest is not their best interest sadly.
 

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Discussion Starter · #4 ·
Thanks Leo,

I thought so too.

I agree, finding the right donor is a challenge.

Just did some checking :

There are 4 clinical trials for IBS using FMT, that are currently recruiting patients. (8-6-15)

1 Montefirore Medical Center (New York)

2 Ghent, Belgium

3 Un. Hospital Norway

4 Orebro Un. Sweden

So, these 4 places are seeking IBS patients to be in this study. I hope to God they are not using the blender method, as this would skew the results badly. I hope they follow Dr. Borody's technique of doing several infusions for IBS.

Wishing them the best success !

clinicaltrials.gov
 

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It would be great if the medical field would really look into this, but they wont. Here is the thing, they do Not want to have a cure for IBS or any other chronic disease out there. They would stand to loose tons of money. Think about it, do you know that Gastroenterologists are the busiest specialists out there. They are overloaded with patients with gut issues( more than half probably have IBS symptoms). If they actually started implementing Fecal Transplants I am fairly certain a lot of people would start getting better. Another issue is that like Leo41 said, it is going to be very hard to find healthy donors as so many people are messed up in so many different ways. A lot of this is because of western diets and because of our Agricultural system and their continuous use of GMO's and pesticides. That as well as too many antibiotics being used in the foods we eat. I try and eat as organic as I can.
My best friends mom got a nasty case of C-diff while in the hospital recovering from surgery. She almost died! Her kidneys were shutting down and she almost had sepsis. MY friend inquired about the FT and the hospital said No. They said they do not do this( and this is a Big hospital here where I live). They said there is only one or two hospitals that will offer it, but that is only if a person has failed the Big gun antibiotics three times!! It is very maddening because they know damn well that the Vancomycin they are pushing down people is going to even screw their guts up way more, but they would rather do that than offer a procedure that would likely cure them and would not have the devastating consequences that the Vancomycin will have.
I would not hold out too much hope on the AMA and FDA passing the use of FTs anytime in the near future. It is sad, but our country is run off of greed. Our best interest is not their best interest sadly.
Jen37 thats not good ok iggy my friendship I wena be friends but iggy me ok that act aint good not good that was really cruel n rude because someone don't mind others feelings :(
 

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Discussion Starter · #6 ·
Anyone, can go to clinicaltrials.gov and do a search for FMT and learn about trials in regards to FMTs. There is IBS, there are some for Chrons, C. Diff. and I think there was for UC also. Just check it out.

It's much better than there was a year ago. Then there wasn't much for studies regarding FMTs , at all. I can't wait to see a trial for MS, and one for Autism. The microbiome has been connected to so many problems. I can't wait to see a trial for Chronic Fatigue, or Fibromylasia, or Lupis. There already is a trial taking place for Diabetes.

I can't wait for a trial for Hay Fever, for Asthma, and for Depression. I guess I'm impatient. Because I realize how much this is going to help people. Trouble is, the FDA wants to make sure it is safe. It's the way the FDA works. They're thinking of our safety ; I understand this from being in a clinical trial for the last 7 years).

So, on the one hand I am very impatient for them to start more trials, and on the other hand I respect their desire for safety. New medications
 

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Thanks Leo,

I thought so too.

I agree, finding the right donor is a challenge.

Just did some checking :

There are 4 clinical trials for IBS using FMT, that are currently recruiting patients. (8-6-15)

1 Montefirore Medical Center (New York)

2 Ghent, Belgium

3 Un. Hospital Norway

4 Orebro Un. Sweden

So, these 4 places are seeking IBS patients to be in this study. I hope to God they are not using the blender method, as this would skew the results badly. I hope they follow Dr. Borody's technique of doing several infusions for IBS.

Wishing them the best success !

clinicaltrials.gov
I'm in the one in New York. They are not using a blender it's 25 pills a day for 3 consecutive days. The pills have no taste.
 

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DuncanD, we will be waiting for your updates ....
Two phases of the trial three months apart. One phase you get the real pills and one you get the placebo and nobody knows which is which. I had one phase a few weeks ago. Next phase is at the end of October. My symptoms which generally can be altered dramatically by slight changes in diet, sleep, excercize, etc. were not affected at all by the first phase. I'm thinking I likely had the placebo. I doubt there will be much to update before Novemeber. Feel free to ask questions here or via PM.
 

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Thanks DuncanD,

Was just reading a really great article about this company, OpenBiome.

Created a new post so others can learn too. Great stuff.

Wish you the best ! Keep us posted.
The link you posted talks about the trial I'm in. The doctor they quoted, Dr. Aroniadis, has been the doctor I've been working with at Montefiore. She's been excellent, by far one of the best doctors I've dealt with throughout this nightmare. She was telling me if this treatment helps a lot of us she is going to start another trial with about 700 ibs patients. Then if that goes well too she is going to work with the FDA to make this a standard treatment for everyone. If nothing else they will at least be able to look at my biome, before and after, and see if my bacteria looks good or not and I should know whether or not that's the cause of my problems.

http://www.fastcoexist.com/3049315/world-changing-ideas/poop-transplants-and-microbiome-makeovers-how-well-engineer-our-bacteri?partner=rss
 

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Discussion Starter · #15 ·
DuncanD,

I've got a few important questions.

1. Can you ask you doctor if the preparation of the pills is done anaerobically ? It is extremely important to do this, as many of the bacteria we are trying to transplant are anaerobic and exposure to air would kill off these bacteria. This would in turn skew the results negatively. Both Borody and Taylor are avoiding exposure to air.

2. Donor selection. Ideally, we need to find donors that have an extremely diverse microbiome, one that hasn't been damaged by medications, or antibiotics. The average American has lost 40% of the diversity of their microbiome, so we run the risk of skewing the results, unless we find and use a microbiome that hasn't been affected by medications, or antibiotics. Please, ask your doctor about this. Ask her if she understands the importance of this, and how it could negatively affect the study.

Perhaps, students from foreign countries that are studying at our universities might have more diverse microbiomes ? Perhaps, the Navajo Indians, or the Amish ? We can't expect to have high cure rates, if we are only transplanting 60% of the normal diversity of the microbiome, and then we kill off many of these bacteria by exposure to air.

Also, worth noting : Taylor is using the microbiomes of several different donors in the aim of increasing the diversity of the total transplant.

Wishing you the best, this is a very promising study, that if done correctly could help so many people here. I read of so many people that are suffering and just wish they could understand that microbiome transplants, if done correctly, are going to fix their problems. They're going to have their health back. I truly hope that Dr. Aroniadis get's these important steps right. If we can get this right, and can fix IBS, it opens the door to solving a host of other diseases too. Sooner or later, this will be front page news.
 

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DuncanD,

I've got a few important questions.

1. Can you ask you doctor if the preparation of the pills is done anaerobically ? It is extremely important to do this, as many of the bacteria we are trying to transplant are anaerobic and exposure to air would kill off these bacteria. This would in turn skew the results negatively. Both Borody and Taylor are avoiding exposure to air.

2. Donor selection. Ideally, we need to find donors that have an extremely diverse microbiome, one that hasn't been damaged by medications, or antibiotics. The average American has lost 40% of the diversity of their microbiome, so we run the risk of skewing the results, unless we find and use a microbiome that hasn't been affected by medications, or antibiotics. Please, ask your doctor about this. Ask her if she understands the importance of this, and how it could negatively affect the study.

Perhaps, students from foreign countries that are studying at our universities might have more diverse microbiomes ? Perhaps, the Navajo Indians, or the Amish ? We can't expect to have high cure rates, if we are only transplanting 60% of the normal diversity of the microbiome, and then we kill off many of these bacteria by exposure to air.

Also, worth noting : Taylor is using the microbiomes of several different donors in the aim of increasing the diversity of the total transplant.

Wishing you the best, this is a very promising study, that if done correctly could help so many people here. I read of so many people that are suffering and just wish they could understand that microbiome transplants, if done correctly, are going to fix their problems. They're going to have their health back. I truly hope that Dr. Aroniadis get's these important steps right. If we can get this right, and can fix IBS, it opens the door to solving a host of other diseases too. Sooner or later, this will be front page news.
Question #1-- I have no idea...I'll ask. I'm pretty sure since these are the people who prepare most of the transplants in the US for C-diff they know how to prepare an FMT pretty well. They've had enormous success curing c-diff.

Question #2--She's told me quite a bit about the selection process they use. She said of the 1000's openbiome screens they only end up using about 2%. They have an entire laundry list of criteria the owners must meet. First they rule out anyone with HIV/Hepatitis etc. They look at their history of antibiotic use. They look at high risk sexual behavior, high risk drug use. They run genetic sequencing on the biome. They only use the best of the best after all that testing is done.

For me they take a before and after shot of the biome. They will be able to tell if bad bacteria (or non-diverse) is whats causing my symptoms. If it is and the treatment doesn't help me much at least I'll know where to focus my treatment efforts in the future.
 

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Discussion Starter · #17 ·
Thanks DuncanD !

Please talk with her about how important it is to avoid exposure to air, if at all possible that is. For a home transplant, we do the best we can, that's all we can do.

Please ask about the antibiotic use. Avoiding antibiotics and medications within the last six months is not the ideal. Ideal would be not ever, no use, and their mother as well. I know that's an extreme challenge to find, and may be next to impossible, but hopefully they are on the same train of thought.

C. Diff. seems to be easier to reach high success rates with just one transplant. IBS and IBD seem to require more than one transplant, it may be because there are many more species of bacteria dispaced. The microbiome is being established over the first 3 years of life. It is a mistake to assume that we can re-establish it, completely, in just one transplant. At this point, no one knows just how many infusions are needed to reverse symptoms in the various diseases that have been associated with the microbiome. For IBS it may be 3 or 4 on average, but for Chron's it may be many more.

Inflammation plays a role too. Reducing ,or eliminating, inflammation before, and after, the transplant may prove very helpful. It plays a role in how the bacteria attach to the intestinal wall. Please look into this.

Also, (1) antibiotics are being found in our meats at the grocery stores. We can't expect our transplants to be as successful if we ingest meats laced with low level antibiotics, after our transplants. I wish this would change and our meats wouldn't have any antibiotics. Perhaps one day we can get enough people to understand and we can influence the FDA.

(2) Medications and over the counter supplements. We have yet to start testing either medications or over the counter supplements to see what affect they have on the mcirobiome. We could possibly skew the outcomes of trials by this. We know antibiotics kill bacteria, but how about these others ? What affect do they have ? Hopefully, for the trial at least, they have patients that are not on other meds or supplements.

(3) we are forgetting about the microbiomes of the esophagus, the stomach, and the small intestine. When we take antibiotics we don't just disrupt the microbiome of the large intestine, we affect these other microbiomes as well. It may turn out these other microbiomes

influence the next micobiomes, down the line.

I'm really hoping that you have a successful treatment and your IBS symptoms reverse. I'm hoping that the trial is successful and they move on to large scale, phase 2 or phase 3 trails, and that these prove successful as well. This can help so many people that really have a hard time with this disease.

It always helps to have notes of questions when you visit your doctor. (my own personal experience; I have another, chronic disease)
 
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