# My FMT for IBS-D at Newbery Medicine



## mellosphere (Sep 22, 2015)

Last week I completed 5 days of FMT treatment at Newbery Medicine in Buenos Aires, Argentina. I would like to provide a little information on the clinic, their protocol, and will also be posting updates. Fair warning...this thread may be filled with TMI if you are averse to reading about this sort of thing.

I have been suffering with a worsening case of IBS-d since as long as I can remember but didn't get a diagnosis until about 10 years ago. I have had a colonoscopy, upper endoscopy, capsule endoscopy, breath testing, hida scan, blood tests of all sorts, and all the tests always came back normal, so I am a classic case of IBS-D. The doctors have never discovered any inflammation of my intestines and I have never noted any blood in the stool other than occasionally bright red (which means it is coming from near or around the anus). The only other medical condition I have is hypothyroidism since the right half of my thyroid was removed 11 years ago due to aggressive growth of a nodule. It has been managed with levothyroxine ever since then. My symptoms include type 5-7 stools, nearly constant cramping and nausea, insomnia and chronic fatigue, and extreme temperature variability.

I have tried countless prescription medications, supplements, fiber alternatives, probiotics, even DIY FMT - both oral and enema type, with no positive results. I am hoping for a more positive outcome with this treatment.

Newbery said that about 90% of individuals that visit their clinic with Crohn's, UC, or IBS-d note some sort of improvement, mainly in decreased urgency, decreased food intolerances, and increased energy and stool consistency. Some people may require more extended treatment than others, but they were very optimistic that I would, over a period of 2-6 months, notice a change for the better.

Newbery does recommend taking 20mg of prednisone 10 days prior to and through your treatment at the clinic. They also recommend eating a gluten free, anti-inflammatory diet. Well, I only could tolerate 2 days of prednisone before the insomnia took over, and I don't eat gluten free either because white bread is the one thing that seems to glue my stools together somewhat so that I could wean myself off of loperamide. I really don't like how loperamide makes me feel, and even though I know that it is not supposed to have CNS effects, I don't feel like myself while taking it, so I've tried to limit my intake of it. Anyway, when I got to the clinic, although they make these two recommendations, they were ok with me not taking prednisone and eating gluten because my fecal calprotectin was super low (so no intestinal inflammation) and that was while eating gluten. They basically told us that they want patients to eat whatever they are accustomed to eating so as to limit diarrhea before coming to the clinic so the FMT has the best chance of sticking around as long as possible. The best time to make a diet change is a few days after starting treatment so as to feed the new little friendly bacteria with healthy fibers.

The clinic is very small and located in an unmarked building. My wife and I stayed in an Air BNB about 7 blocks away and the walk was very pleasant. The city is quite safe especially in that area of the city (about 14 million in the metro area). Both of us are Spanish speakers so this removed the language barrier, but if you don't speak Spanish, the clinic has a translator.

The first day I had a short meeting with the doctor at the clinic who reviewed again the things I discussed above and then I went to another room for the FMT. All of the samples administered at the clinic are collected fresh, the same day, from their pool of donors. I know there has been a lot of discussion about donor selection at the FMT clinics. Personally I didn't care too much as long as they didn't have any transmittable diseases...I'm pretty desperate and to my knowledge, no clinic has yet come up with a way to determine what an excellent donor stool contains concerning bacterial content. They can tell you what is bad but I'm not sure if they can really tell a good from a great at this point. I was not able to determine any more information about this while I was at the clinic. Newbery tests all donors for diseases and also has a strong preference for athletic individuals with good diets. That was good enough for me.

Just as a side note, I ended up choosing Newbery clinic over the other clinics due to close proximity to my timezone (central standard), the minimum stay length of only 1 week (since I couldn't take more time off work than that at one time), and the fact that they really want you to take samples back to continue treatment at home. I took home 20 samples and had no problem with customs. The samples were packed with dry ice and placed in a cooler bag which I brought from the USA (per their recommendation) and I stuffed that into my carry on luggage along with all the necessary accessory equipment.

The FMT itself is quite comfortable and much less messy than it seemed when I did it DIY. At the clinic, the young lady who administers the samples brings them in already in a syringe. The total volume is around 120mL. There is a size 10 catheter which she applied ample lubricant to and inserted about 10 inches up the colon with about 6 inches still remaining. The syringe was then attached and the liquid was slowly injected. The sensation is not bad and personally I had no problem keeping the sample in. They have you lay down for 45 minutes afterward and then you are free to go. They even say you can release the FMT after that 45 minutes if you need to and they don't worry about it after that. I was able to keep the first sample in for 8 hours, and every day after that I kept it in for 3-5 hours. This included many days that my wife and I were out and about walking around, so for me it really isn't a problem to keep it in. Just resist the urge to let any gas go...you might accidentally leak a little.

From day 3-5, my wife actually administered the samples since she will be helping me continue transplants at home. She remarked how clean and easy the process is and I agree completely. The smell is very low level and due to the length of the catheter and the placement of the liquid up the colon, it doesn't leak at all around the anus when the catheter is removed.

I got back this weekend because I had to be back at work today, and now after work, we've just completed our first at-home FMT. The samples are frozen in glycerol to preserve the bacterial cultures and I was told there is less than a 10% loss of bacteria due to the freezing and thawing process. The volume per sample they send home is about 50-60mL. All you do is thaw the bottle in a warm water bath and suck it up into a syringe, insert and attach the catheter, and away you go.

How do I feel? A little bit hard to say, so soon, but I certainly don't feel any worse. I had previously only been eating pork, chicken, eggs and bread. They requested that I cut back a little on the pork and start eating more fish, as well as giving me a list of fruits and vegetables to try. So far I have eaten skinned zucchini, carrots, peas, very small portion of potato, a few grapes, quarter of a peach, turnips, rice, and my usual white bread, fish, chicken, and eggs. Stools are about a 6 still but so far absolutely no 7's! This is an improvement in my mind already, especially since this is while I've already added some foods back to my diet. And the color of the stool is a bit darker, not yet a real brown, but definitely trending away from the yellow stools I've had for a long time. The worst I've felt has been actually after the times I've eaten fruits. They provoke considerable cramping (I assume due to the sugar) and I am pretty sure I have SIBO issues to some extent although was never diagnosed with that formally. Vegetables have so far been much more kind to me than they used to be although admittedly I have only eaten pretty mild and not-too-fibrous ones.

I am encouraged and am hoping for continued improvement over the next few months. I am planning to do catheter FMT's at home 3x per week for 4-5 weeks and then re-assess how I'm doing. I'd like to keep a few on hand in case I get sick or something.

Thanks to everyone on the thread who has made FMT more public and posted their successes (and some failures). The stories were encouraging and based on my experience this past week at Newbery (notwithstanding my results), I would highly recommend considering visiting Newbery for FMT treatment.


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## flossy (Dec 8, 2012)

Thanks for posting this and please keep us updated on your progress!


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## dekkalife (Aug 21, 2015)

It's great to hear your experience at Newbery, mellosphere! As far as the procedure itself, it sounds almost identical to Taymount's, with the exception, as you mentioned, that Newbery uses fresh implants. Can I ask how much your additional implants cost you?

I hope you continue to see improvements over the next couple of months!


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## mellosphere (Sep 22, 2015)

dekkalife said:


> It's great to hear your experience at Newbery, mellosphere! As far as the procedure itself, it sounds almost identical to Taymount's, with the exception, as you mentioned, that Newbery uses fresh implants. Can I ask how much your additional implants cost you?
> 
> I hope you continue to see improvements over the next couple of months!


I paid $3000 USD for 20 implants. The cost went down as the amount of implants I purchased went up. The cost for 1 week in clinic including 5 implants was $2000. So basically in the end I got 25 implants for $5000 total which works out to $200 per sample. Im happy with that compared to the projected costs I looked at with the clinic in the bahamas.


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## dekkalife (Aug 21, 2015)

The Bahamas clinic is insanely expensive. Personally, I think it's designed as a luxury option rather than one of geographical convenience. Newbery is definitely more affordable than Taymount, so I think that and their use of fresh implants makes Newbery a really good option.


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## acureisoutthere (Jun 28, 2014)

Fascinating Mellowsphere !

I'm very happy for you.

Some suggestions : please try to avoid processed foods. Many processed foods contain emulsifiers, which I hope you know already, that they are associated with chronic inflammation in the gut (not something you want for you 'new' species0. Also, a recent study that was done in Hawaii, found that a common food preservative found in processed foods is killing off our beneficial bacteria. I have a good feeling we will continue to find more damaging connections with processed foods. I know it is hard, but please do your best to avoid processed foods.

I also want to suggest that you start including good probiotic foods in your diet like homemade sauerkraut, kimchi, kefir and kombachu.

These seem to promote a gut homeostasis.

Try to eat fresh picked fruits and vegetables whenever you can. A large variety is best. Fresh is best, if you can.

Also, include some prebiotic foods and indigestible carbs, to feed your good bacteria.

I think if you follow these suggestions, you will continue to see gradual improvement over the next few years. I am pulling for you freind, and hope you reach the healthy state that I have found (it's really nice).

Thank you very, very, very, much for this update. Please, keep updating us.


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## ga-peach (Jun 10, 2005)

Thanks for the very informative post. I hope you have great success with this!


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## celestin (May 20, 2004)

acureisoutthere said:


> Fascinating Mellowsphere !


1- ?? Why "fascinating" ?

2- By the way, is it you?: http://acureisoutthere.co.uk/


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## Frenchneedyou (Jun 10, 2017)

Well, by "curiosity" i looked how much money it will cost me if i go to taymoun UK for 2 weeks:

6198 euros on total.

Train ticket to london:
358 euros

taymount.com programme:
£3960 => 4510 euros

London to Hertfordshire:
taxi: 140 euros
train: 25 euros

Hostel:
50 euros * 17 = 850 euros
Free breakfest

Foods:
20 euros each days (340 euros)

358+4510+140+850+340 = 6198 euros

If i had money, it would not be a problem but i haven't... I'm a 23 years old who don't work and i failed my school because of this. I'm sick every day of my life so i can't do ######... And it's not sure to be cured... I'm more and more desperate. One day, when i will be tired of all of this, i will end it.


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## acureisoutthere (Jun 28, 2014)

I understand french. I understand your frustration. IBS-D is a terrible disease to have. I still remember how much I hated mine. My sympathy to you friend.

Have to tried to find your 'trigger foods' ? You basically start with a very few 'safe' foods, and then one at a time, introduce a new food and then wait and see if you react to it. It takes a long time, but at least you find which foods cause symptoms for you, and then you can avoid them, and hopefully this reduces your symptoms at least a little.

Some people try different probiotics, and sometimes they find one that helps to relieve some of their symptoms. It seems that one might work for one, and for someone else, a different might help. Each of us has a different microbiome, thus the difference.

Please, don't give up. I know it is frustrating. You've come to the place where people understand what you have, and what it can do to your life.


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## celestin (May 20, 2004)

....acureisoutthere...
https://www.healingwell.com/community/default.aspx?f=30&m=3477209&p=3

= IBScureit ...

expert in Lyme disease with THE treatment: modifying the microbiome..LOL

By chance the moderators took the appropriate measures!


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## mellosphere (Sep 22, 2015)

Well I hate to say it but I cant say that FMT has done much if anything for me yet. It has been about four weeks now and though my stools are a little harder i am still super crampy all the time, maybe even moreso.

I am starting to think maybe i need to try another antidepressant or something. Obviously i will give this more time but the FMT hasnt changed a thing about my cramps that wake me up at night or my ability to tolerate food. Fiber tears me up. I dont eat any sugar. Fruit is impossible and causes massive cramps. White bread is the only thing i can eat to hold my stools together in some sort of recognizable stool. Still lots of mucus in stool. I feel cold all the time still.

Not looking good for me.


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## flossy (Dec 8, 2012)

mellosphere said:


> Well I hate to say it but I cant say that FMT has done much if anything for me yet. It has been about four weeks now and though my stools are a little harder i am still super crampy all the time, maybe even moreso.
> 
> I am starting to think maybe i need to try another antidepressant or something. Obviously i will give this more time but the FMT hasnt changed a thing about my cramps that wake me up at night or my ability to tolerate food. Fiber tears me up. I dont eat any sugar. Fruit is impossible and causes massive cramps. White bread is the only thing i can eat to hold my stools together in some sort of recognizable stool. Still lots of mucus in stool. I feel cold all the time still.
> 
> Not looking good for me.


Sad to hear this.

You might want to try aloe vera gels for your cramps. I get the NOW brand and take 2 in the mornings and two later in the day, it definitely helps with the icky feeling in my intestines.

Good luck with it all and keep us posted!


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## dekkalife (Aug 21, 2015)

Sorry to hear it hasn't gone as expected. Stay positive though, it might just need more time.

Perhaps you can give Kratom a shot now.


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## PD85 (Aug 19, 2010)

mellosphere said:


> Well I hate to say it but I cant say that FMT has done much if anything for me yet. It has been about four weeks now and though my stools are a little harder i am still super crampy all the time, maybe even moreso.
> 
> I am starting to think maybe i need to try another antidepressant or something. Obviously i will give this more time but the FMT hasnt changed a thing about my cramps that wake me up at night or my ability to tolerate food. Fiber tears me up. I dont eat any sugar. Fruit is impossible and causes massive cramps. White bread is the only thing i can eat to hold my stools together in some sort of recognizable stool. Still lots of mucus in stool. I feel cold all the time still.
> 
> Not looking good for me.


mello... a lot of your symptoms remind me of mine! I feel as though we have a connection because I also take thyroid medicine every day. I do not have a functioning thyroid due to radiation treatment. I sent you a private message to discuss the thyroid connection but I'm totally willing to talk about it on here.

Did your IBS symptoms start around the same time as your thyroid problems/removal? Have you tried any thyroid medicine other than levothyroxine like Naturethroid or Armour?

Hope to hear from you soon!


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## acureisoutthere (Jun 28, 2014)

It makes me wonder what Dr. Borody is doing that makes him so successful ?

In his letter to me in July, 2015 he stated that for IBS-D, 30 % don't respond, no matter what he does, even with my suggestions. Yet, 70% do respond.

Then I read in 2016, in Alanna Collen's book, "10% Human" that she reports Dr. Borody is achieving an 80% success rate with IBS-D.

Anyone can get this book and read it too.

So what is he doing, that makes him so good at reversing IBS-D ? I sure wish our doctors here in the States and elsewhere, were as good as he is. He's got something figured out it seems.

I continue to look for things that perturb our microbiomes. Cosmetics contain emulsifiers. Hormones in birth control pills affect the microbiome. Emulsifiers in processed foods cause chronic inflammation in the gut, which affects the microbiome. Emulsifiers are in many products and there are several studies about them. I think they are a particularly bad mistake. A common food preservative found in processed foods has been found to be killing our beneficial bacteria. Mouthwash and toothpaste have been found to be affecting the microbiome. NSAIDS and PPIs affect the microbiome. What else are we missing ? What else is causing harm to our microbiomes, that we haven't found yet ? I keep wondering that, and wish that further harm could be prevented. I'm convinced the trial medication (phase 3) for my kidney disease was responsible for my IBS-D.

There are over 700 products with triclosan in them. Triclosan is an antibacterial, it kills bacteria. In 2016 I read a study that found that the average person in the US was urinating triclosan. Now, if you understand that we are mostly bacteria, and that it is our good bacteria that are keeping us healthy, then these products with triclosan (which kills both good and bad bacteria) are probably not a very good idea. In fact you might say they are the stupidest thing we could be doing or exposing ourselves too. What else do we do wrong ? I think each of us should be asking this, and trying to understand our mistakes and then make better choices so we can prevent more harm.

Sad to hear this Mellow.

I was just wondering something, have you ever tried a period of fasting (say for 20 or 24 hours) and then tried foods, does this make any difference ? I was reading somewhere that somebody said that intermittent periods of fasting like this can reduce populations of bad bacteria, and possibly help to 'reset' the digestive tract. It wasn't part of a study, and I can't remember where I read it now.


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## mellosphere (Sep 22, 2015)

To accureisoutthere: i am as big a believer as anyone in FMT and the microbiome. But there is something else at play here. Theres more to my story even though for many people it may be sufficient to do only FMT.

Unfortunately all we each have is our own reality to exist in. All i can say is that i know my symptoms and i know my body. The bacteria makes a difference but my body seems to override it, just like the rest of my attempts to slow things down.


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## mellosphere (Sep 22, 2015)

Hi PD, I originally wrote this up as a response to your PM but I figured that since I started this thread it wouldn't be hijacking to just post more of my story here.

I am taking 75mcg daily and began after the right half of my thyroid was removed due to extensive nodule growth.

However, my symptoms started well before that. The first problem I distinctly remember having was when I was 8 years old and I had urticaria for about 7 months, every single day. We never could find a cause for that. By the time I was 10 years old I began realizing that my sleep habits were not like my family's...they could all sleep as long as they wanted but I was always an early riser, against my will.

By the time I was 13 I was taking a lot of melatonin to try to help with this issue and by the age of 15 I had tried a few prescription sleeping medications with no success. They seemed to help for a month or two but after that it would go back to normal.

When I was 16 is when my thyroid issue was discovered and half of it was removed. I thought maybe I would go back to normal after that. I thought maybe that was the issue but things only got worse. I always did have strange reactions to some foods including caffeine, chocolate, and sweets. They would make me uncomfortable in my stomach but I didn't understand at first. By the time I was 18 the diarrhea was a real issue and my sleep was getting worse.

During my time in university and the first year or two of grad school I really explored all the endocrine explanations for my conditions. I was tested for hashimotos and they also found that I had low testosterone. I took testosterone supplementation and it helped for a short while until things went back to my diarrheal state. This began to be a pattern. Later I concluded that my low testosterone (which I still have) is likely related to constant fatigue and lack of sleep. When the body is tired the first thing it shuts down is the sexual drive and reproduction capacity. It was also during these years that I obtained T3 to experiment with at first and later armour thyroid medication. I also tried supplementing iodine. This was all done with great research on my part as well as medical guidance from well-regarded physicians. I am a biochemistry major and a dentist so I do have a reasonable understanding of biology and biochemistry. It made sense that these medications could help me. But after about 2-4 weeks, it seemed like I kept having to increase the dose to a point where it was no longer sustainable. My body just fights to return to its point of stability, which seems to be a state of constant cramping and diarrhea.

About this time I also experimented with antidepressants. To be honest, this is the one thing that made me feel the best. The first couple weeks taking amitriptyline I felt like I could conquer the world! That is the only two weeks I have felt really GOOD in the last 15 years. But the problem was that after about 3-4 weeks, all my diarrhea and insomnia symptoms came back with a vengeance, plus it was worse because I was more emotional due to the medication's effects. In a matter of a few months I went from 10mg to 75mg and at the end of it I was worse off than when I started, so I quit cold turkey and survived the terrible withdrawal effects just because I hated how emotional the antidepressant made me feel. Of course this really made my insomnia and diarrhea go through the roof but I wanted to get back to a baseline and started researching other options.

This led to me spending the second half of my grad school years focused on the gastroenterology side of my symptoms. I went to a great research school which has a well known hospital it is connected to. I received excellent medical care and my doctor was willing to test me for every test I could come up with. I had a colonoscopy, endoscopy, capsule endoscopy, breath testing, gallbladder testing, food allergy testing, blood testing for various things, parasite testing, you name it - ALL came back negative. They told me there's no inflammation, there's no organic problem, there's nothing. So I started believing it was bacterial.

At this point I was taking 6-8 loperamide per day. I finally got my doctor to prescribe rifaximin and it helped me reduce my loperamide down to just 2 tabs per day. I was so excited, I thought that this could be my solution. I eventually tried a lot of antibiotics that I obtained while overseas (much easier to try medications outside the USA). They worked to varying extents to the point that I could get myself off of loperamide completely because I hated how it made me feel. I then experimented with all sorts of healthy bacteria - first probiotics, then yogurt, then water kefir, then milk kefir, then home FMT (oral and enema) and finally last month my attempts culminated with my trip to Argentina for catheter FMT from donors that I could really trust. But unfortunately the effects of treating my gut with bacteria (either via antibiotics or probiotics/FMT) have been even shorter lived than any of the endocrine experiments I tried earlier.

I'm sitting here writing this today just pondering my next step, but I don't see many options out there. Perhaps kratom, perhaps something else. I'm not sure what else is available. Planning to talk to a psychiatrist because I do recognize there is a anxiety component to my condition. I think I mentioned this on the boards before but I have noticed that even when I watch a movie, my cramps get worse. The slight bit of anxiety induced by watching a movie is enough to cause IBS cramps! I have done a lot in my life to reduce stress and everyone around me would say that I am a low-stress, calm person. But that took a lot of work. I avoid interpersonal drama just as strongly as I avoid most foods. Lol I've been living off less than 10 food items for many years now.

I wish I could find a doctor that said "I know exactly what you have, I've seen this before"...but when I explain everything I've just written, they look at me just as confused as I am. And I can't blame them because I've never really found someone with my combination of issues. I am so incredibly sensitive to food and stress that it just leaves me laughing and shaking my head and pulling out my hair all while running to the bathroom lol. And the frustrating thing is that although some things seem to help for a short while, their effects never stick. My body just hits the reset button and finds its normal diarrhea/cramp/insomnia state. This makes me concerned to try other medications because I have had to go through withdrawal for a few medications already and that's no fun at all. But I'll do what it takes if I'm convinced it may help.

I have to keep believing there is something out there that will help me. I'm just not sure what's wrong with me and where to look next.


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## celestin (May 20, 2004)

acureisoutthere said:


> It makes me wonder what Dr. Borody is doing that makes him so successful ?


He is just lying.


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## celestin (May 20, 2004)

acureisoutthere said:


> In his letter to me in July, 2015 he stated that for IBS-D, 30 % don't respond, no matter what he does, *even with my suggestions. *


'Even with your suggestions'. Incredible...Really incredible.


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## rosenberg (Oct 1, 2017)

well the fact that you mentioned sibo is a huge finding.

I also deal with sibo/low stomach acid and ibs. I am also looking into getting an FMT done and I am glad I ran into this thread.

I think it makes sense that FMT didn't help as much if you have SIBO. FMT is to re-populate the colon and get the colon healthy. If you have sibo on top of this, I don't believe you will fix sibo with fmt. you need to fix your stomach/small intestine to fix your indigestion, cramps from sugar in particular.

from what I am thinking, you need to go get your stomach fixed asap as I am sure the FMT have re-populated the colon microbiome but now you just need to fix your stomach.

if the food you are digesting has to go through the stomach and small intestine first, I don't think it matters how good ur colon is.

what do you think about my theory????


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## mellosphere (Sep 22, 2015)

I think it makes sense. But what do you do to fix sibo? Ive followed a sibo diet for a while and i also have taken plenty of antibiotics prior to fmt.


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## acureisoutthere (Jun 28, 2014)

I was just wondering this morning, have you considered a functional medicine doctor ?

Some of them it seems are paying close attention to the microbiome research.

How one would find the best functional medicine doctor, I have no clue.

One other thought, Dr. Timothy Rubin in Duluth was dong the top down approach for FMTs . I'd be curious if he ever noticed any affect on SIBO ( this would have been before the FDA clamped down and only allowed FMTs to be performed by doctors for re-current C. Diff. and only for other conditions if it was part of a clinical trial).


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## flossy (Dec 8, 2012)

celestin said:


> He is just lying.


I've been following these FMT threads for awhile, I'm starting to wonder this myself, if the cure rates aren't inflated?

When they don't work, what could the problems be?

-Perhaps they should use fresh stool instead of what they use now?

-Or perhaps the problem might also lie further up the intestines where the FMT's don't reach?


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## dekkalife (Aug 21, 2015)

flossy said:


> I've been following these FMT threads for awhile, I'm starting to wonder this myself, if the cure rates aren't inflated?
> 
> When they don't work, what could the problems be?
> 
> ...


I think there's a consensus here that if FMT doesn't help your IBS, there must be something wrong with the implants, or the procedure itself. While these are possible factors, without accurate and conclusive gut biome testing, it's possible that FMT is just the wrong treatment for you. Logic suggests that FMT should prevail against dysbiosis and infection, but we all know misdiagnosis is rife in conditions like IBS. If you later find out that your IBS is caused by deficiencies, thyroid problems or any other conditions not greatly affected by bacteria, can you really expect FMT to help? I don't mean to be a downer, but I think the expectation that FMT should help IBS regardless of it's cause is problematic. I think it needs to be considered that for some people, FMT is a square peg in a round hole.


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## acureisoutthere (Jun 28, 2014)

I found this on the PowerofPoop website, "Why FMT doesn't always work".

I know it is quite long, but she brings up many interesting points.

http://thepowerofpoop.com/why-fmt-doesnt-always-work/

I also found this success story for IBS.

http://thepowerofpoop.com/brandis-story/


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## acureisoutthere (Jun 28, 2014)

This article talks about how our microbiomes are different, in different areas of the world.

So, since the microbiome of a donor from Argentina is different from a person from the US, does this make a difference in an FMT, or not ?

http://www.nutritionaloutlook.com/science/microbiome-study-challenges-microbiologist-discusses-opportunities-hurdles-ift-2017


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## Frenchneedyou (Jun 10, 2017)

I don't think so. But maybe some are more performant than the others... If you never took any antibiotic of your life and do have a very nice diet with zero stress what so ever, i think it can work on this?


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## acureisoutthere (Jun 28, 2014)

I was going through old bookmarks and found this thread about FMT. It seems that this person achieved some success with FMT, but then after a while his IBS came back.

http://www.ibsgroup.org/forums/topic/166438-fecal-transplant-for-ibs-d/

It's an interesting thread, I must have found it originally when I was first learning about FMTs, since it was from 2013.

Studies are finding that preservatives in processed foods are killing our beneficial bacteria. Other studies have found that emulsifiers are causing chronic inflammation in the digestive tract. This leaves me wondering if after his success, that failure to avoid processed foods may have played a role in his IBS coming back ?

I think it is important to ask if there is anything that he has exposed himself to that may have caused a problem.

I never use mouthwash, rarely use toothpaste, have a whole house chlorine filter, avoid processed foods for their salt and above reasons, never use PPIs, NSAIDS, and try to avoid GMO foods also. I try to have prebiotic foods in my diet, and home made probiotic foods too. I try to eat a variety of fresh fruits and vegetables. I know I am not perfect at all these, but my IBS is gone, and it's been since April of 2015. I just wish this is helpful for someone.

I notice if I eat too many foods with sugars it has an affect. What I mean is that; I've been trying to beat this need of 10 hrs of sleep a night. I've tried fasting for 20 hrs, then eating strictly fresh veggies and fruits, plus some kimchi (non-pasturrized). It seems to change things, but if I eat sweets for several days, the need for sleep returns. Still preliminary and trying to figure this out and if I can change things. Not really sure of what to conclude yet.


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## acureisoutthere (Jun 28, 2014)

"the work already provides strong indications that donor-patient compatibility is more important than assumed "

https://www.medicalnewstoday.com/releases/309691.php


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## Frenchneedyou (Jun 10, 2017)

What do you think about Lyme Disease? The symptoms are oftenly very close to SIBO/IBS... and it's something doctors don't think about, don't want to think about or are bad at dealing with it.


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## gigitygigity (Jan 3, 2018)

Hi,

just joined today as I'm researching FMT as a possible treatment.

mellopshere, have you considered getting tested for parasites, viruses or bacterial pathogens using a GI Map Test? It basically tests for DNA of pathogens in your poop. I had this done recently after treatment for candida overgrowth in my gut but still wasn't back to normal health. It turned up two parasites, 1 parasitic pathogen and a Viral Pathogen. Since I've been treated for these I've returned to near normal health, but would like to get my gut health as well as possible with FMT, which is why I'm researching. Pathogens may not be an issue for you, but at least you could rule those out with this test.

Diagnostic Solutions Laboratory conduct the tests and all information is on their site. I can send you my results so you can see what's involved also.

As acureisoutthere mentioned, have you tried working with a Functional Medicine Doctor? They are more holistic in nature and utilise more advanced testing than mainstream medicine, e.g. GI Map or Organic Acids Test, both of which were able to give me a clear picture of my gastrointestinal and metabolic health respectively.


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## MrAndy (Apr 22, 2017)

I did a home fmt for 10 days about 4 months ago, I had about 50% improvement in my symptoms, then went home 1 month later and mother gave me a bunch of chinese hebal medicines she thought would cure the rest reluctantly I tried them and had diarrhea for 1 week and all symptoms came back just like before.

I am thinking the fmt did work for me but the diarrhea essentially made me flush everything out. So I believe there is hope. Reading your story it may be you dont have a bacterial issue but more of a underlying problem. The fact that antidepressants worked sounds like a big red flag that it isnt bacterial. Not a doctor though have only read like 5 books on brain gut connection.

I myself am saving up to try another fmt this time in a clinic. Sad at how far behind science is for gastro issues


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## acureisoutthere (Jun 28, 2014)

Any updates to your condition Mellow ?


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## mellosphere (Sep 22, 2015)

I am going to say that after undergoing diy and clinic versions of FMT, I really dont think its going to be my cure. Yeah ok I know you might say that it was the donor stool or that I didnt have enough samples but its just not helping. My stools have changed but not altogether in a good way. I would have to say that since FMT my stools are overall a little more light brown instead of yellow and 2 out of 3 days my stools look better but my cramps are equally as bad as they were and sometimes I feel like my urgency is worse. I believe this is due to the fact that since FMT I am just ever so slightly less diarrhetic on a normal day but my body seems to interpret that as constipated (when really Im not). Then either the second or third day pretty consistently it sends my body into overdrive diarrhea mode to flush everything out and when that hits I get a really bad pain in my colon and I need a toilet in about 5 minutes or something bad is going to happen. I never had those issues before FMT.


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## MaximilianKohler (Apr 15, 2013)

Thank you so much for this detailed report and the follow up status!



rosenberg said:


> I think it makes sense that FMT didn't help as much if you have SIBO. FMT is to re-populate the colon and get the colon healthy. If you have sibo on top of this, I don't believe you will fix sibo with fmt. you need to fix your stomach/small intestine to fix your indigestion, cramps from sugar in particular.
> 
> what do you think about my theory????


I don't agree. SIBO is essentially something like the lack of specific bacteriophages to keep specific microbes that feed off certain sugars in check.

Bacteriophages essentially act like antibiotics/crowd control. See: https://www.reddit.com/r/HumanMicrobiome/wiki/index#wiki_bacteriophages_.28phages.29.3A



flossy said:


> When they don't work, what could the problems be?
> 
> -Perhaps they should use fresh stool instead of what they use now?
> 
> -Or perhaps the problem might also lie further up the intestines where the FMT's don't reach?


See here: https://www.reddit.com/r/HumanMicrobiome/wiki/index#wiki_fecal_microbiota_transplants_.28fmt.29.3A

Likely the #1 factor is donor quality. It's extremely difficult to find high quality donors.



dekkalife said:


> I think there's a consensus here that if FMT doesn't help your IBS, there must be something wrong with the implants, or the procedure itself. While these are possible factors, without accurate and conclusive gut biome testing, it's possible that FMT is just the wrong treatment for you. Logic suggests that FMT should prevail against dysbiosis and infection, but we all know misdiagnosis is rife in conditions like IBS. If you later find out that your IBS is caused by *deficiencies, thyroid problems or any other conditions not greatly affected by bacteria*, can you really expect FMT to help? I don't mean to be a downer, but I think the expectation that FMT should help IBS regardless of it's cause is problematic. I think it needs to be considered that for some people, FMT is a square peg in a round hole.


You should review this to understand that those things you listed as "not greatly affected by bacteria", *are indeed greatly affected *by the gut microbiome (not just bacteria but the viruses & fungi, etc.): https://www.reddit.com/r/HumanMicrobiome/wiki/intro



MrAndy said:


> I did a home fmt for 10 days about 4 months ago, I had about 50% improvement in my symptoms, then went home 1 month later and mother gave me a bunch of chinese hebal medicines she thought would cure the rest reluctantly I tried them and had diarrhea for 1 week and all symptoms came back just like before.
> 
> I am thinking the fmt did work for me but the diarrhea essentially made me flush everything out. So I believe there is hope. Reading your story it may be you dont have a bacterial issue but more of a underlying problem. *The fact that antidepressants worked sounds like a big red flag that it isnt bacterial*. Not a doctor though have only read like 5 books on brain gut connection.
> 
> I myself am saving up to try another fmt this time in a clinic. Sad at how far behind science is for gastro issues


Same comment to you as to dekkalife. Please review that link. The gut microbiome has major effects on the brain (including depression), and there is a 2 way street so that the brain can effect the gut microbiome as well. There are a large variety of signalling going on between the microbes in your gut, the CNS, the brain, etc..


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## acureisoutthere (Jun 28, 2014)

Mellow,

I was just wondering, are you able to eat any amount of fiber, like cooked beans, or lentils ?


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## acureisoutthere (Jun 28, 2014)

Mr Andy,

Have you ever thought about Dr. Borody at the Centre for Digestive Diseases in Australia ?


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## acureisoutthere (Jun 28, 2014)

Mellow,

I forgot to say thank you for your update. Have you ever thought about contacting the clinic and asking them their opinion about your current condition ?


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## mellosphere (Sep 22, 2015)

I have not contacted the clinic.

I also forgot to mention...the other thing that has started since FMT is now I have some heartburn...i NEVER had heartburn before FMT. I guess I could take an antacid but I dont know if I want to start doing that. Any suggestions?


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## MaximilianKohler (Apr 15, 2013)

I also developed some reflux after 1 enema-only FMT, but it was temporary.


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## acureisoutthere (Jun 28, 2014)

When I had my IBS I would sometimes get heartburn and it would really come on strong. The only thing I could do was to quickly find some Tums and drink plenty of water. I learned to always have some Tums on hand wherever I was at. After my FMT, it changed substantially, and I get it less often. Still get it once in a while, but far less frequently.

As you probably know, I quit using toothpaste and mouthwash and just brush and floss with water (non-chlorinated). I did this to err on the safe side of protecting the natural flora of my oral microbiome. Has this had a helpful affect on my acid reflux ? Maybe, but I can't really say for sure.

I still take Tums when needed, but I certainly don't want to take any PPIs.


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## ♧Pandora☆ (Jun 23, 2017)

Acure, i use to get bad gagging sometimes or heartburn. I never linked it to my toothpaste then i found out it was the sorbitol in it.


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## mellosphere (Sep 22, 2015)

Hey pandora, I know you said in the past that what helped you was getting allergy or sensitivity testing. Can you share what company administered those or what tests you had? Or did you work with your doctor for these?


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## ♧Pandora☆ (Jun 23, 2017)

Hey mello, il send you link, i had a great tester. Not an allergy test but intolerance test.
Along with a low histamine diet, and exactly what supplements i needed for my body as i had a fmp test me to. 
I ate a whole food diet, with only bottled water, while on my healing diet.


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## acureisoutthere (Jun 28, 2014)

♧Pandora☆ said:


> Acure, i use to get bad gagging sometimes or heartburn. I never linked it to my toothpaste then i found out it was the sorbitol in it.


Thanks for the tip Pandora.

Here's an article I found on sorbitol.

https://www.kitchenstewardship.com/xylitol-erythritol-sorbitolwhats-that-ol-about/

They put all of these additives in our food, and other products and are glad to make us guinea pigs as long as they can make a buck. "Generally recognized as safe" seems like it means : "We don't really know if it's OK, or not, please buy our product and be a guinea pig, we'll find out later " or "It should be safe, but we really don't know"

We have millions of people that are sick in our world. It doesn't seem like our current system of approving additives is protecting us.


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## mellosphere (Sep 22, 2015)

Well the last two weeks ive been getting exponentially worse. Im thinking of taking antibiotics again. No food is comfortable at all. Bad diarrhea each and every day, multiple liquid stools. I really didnt think Id be back at this place after FMT. But Im not sure what else to do.


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## MaximilianKohler (Apr 15, 2013)

mellosphere said:


> Well the last two weeks ive been getting exponentially worse. Im thinking of taking antibiotics again. No food is comfortable at all. Bad diarrhea each and every day, multiple liquid stools. I really didnt think Id be back at this place after FMT. But Im not sure what else to do.


I found a way to stop the exponential worsening for me.

1. Extremely restrictive diet.

2. Jarrow's s.boulardii + preforpro phages.

3. Imodium.


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## mellosphere (Sep 22, 2015)

Just wondering what you guys would think about this- how long could a fresh sample last in the fridge before it is used for FMT? Is it ok to refrigerate a stool sample for like 24 hours before use?


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## MaximilianKohler (Apr 15, 2013)

mellosphere said:


> Just wondering what you guys would think about this- how long could a fresh sample last in the fridge before it is used for FMT? Is it ok to refrigerate a stool sample for like 24 hours before use?


I'm not sure if anyone knows for sure.

I think if there's a chance the donor is not the highest quality then the longer in storage means longer that possibly harmful microbes could proliferate. But if the donor was very high quality then that risk seems lessened. I think 24 hours might be ok - thinking about food and fermented foods.


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## dekkalife (Aug 21, 2015)

mellosphere said:


> Just wondering what you guys would think about this- how long could a fresh sample last in the fridge before it is used for FMT? Is it ok to refrigerate a stool sample for like 24 hours before use?


No idea, but I would have thought things like the soluble fibre/prebiotic content of the stool would contribute to the longevity of bacteria survival.


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## Vaughan G (Oct 30, 2019)

mellosphere said:


> Well I hate to say it but I cant say that FMT has done much if anything for me yet. It has been about four weeks now and though my stools are a little harder i am still super crampy all the time, maybe even moreso.
> 
> I am starting to think maybe i need to try another antidepressant or something. Obviously i will give this more time but the FMT hasnt changed a thing about my cramps that wake me up at night or my ability to tolerate food. Fiber tears me up. I dont eat any sugar. Fruit is impossible and causes massive cramps. White bread is the only thing i can eat to hold my stools together in some sort of recognizable stool. Still lots of mucus in stool. I feel cold all the time still.
> 
> Not looking good for me.


hi, where you given a course of antibiotics and ate a low fiber diet before you did the procedure ?


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## mellosphere (Sep 22, 2015)

Vaughan G said:


> hi, where you given a course of antibiotics and ate a low fiber diet before you did the procedure ?


Low fiber- yes
Antibiotic- no, they required no antibiotic in the previous 3 months.


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