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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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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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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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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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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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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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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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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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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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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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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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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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Discussion Starter · #17 ·
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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Discussion Starter · #18 ·
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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