Fecal Transplants, IBS, Asberger's and Unexplained Itching with John Fawkes

Welcome to The Perfect Stool: Understanding and Healing the Gut Microbiome podcast. This is your host, Lindsey Parsons. I'm a gut health experimenter, health coach, and fascinated student of the gut microbiome. I'll be talking with alternative medicine professionals, dietitians, scientists, and people who've tried various cures, especially fecal microbiota transplantation, to heal their gut. To give you the inside scoop on everything you've always wanted to know but were afraid to ask about your gut health so that you too can have the perfect stool.

Hi everyone, this is Lindsey Parsons with The Perfect Stool, and today we have on John Fox, who is an evidence-based fitness and health coach practicing in Los Angeles. And he provides online coaching to help people build muscle and lose fat. John also wrote an article called "What Happened When I Got a Fecal Transplant?" in which he detailed the amazing results of his fecal transplant on Rod Wolfe's webpage. So welcome, John, and thanks for talking with us today.

Hey, Lindsey Parsons, good to be here.

So as we prepared for the interview, John had written about a lot of things in the article that had changed in his life. And when we talked, some of those benefits, he, you know, he walked back a little bit some of the benefits that he attributed to the fecal transplant in the article. But in the interest of honestly portraying the potential benefits and risks of fecal transplants accurately, I really wanted to move forward with the interview, even though it was slightly less impressive as he might— may have written about, because that's, you know, in science, often all you ever see are the published articles in which people had really impressive results or significant results. And you rarely see the studies that don't find much of anything. And that's important in the process because you don't know what works and what doesn't if you don't find out about the unsuccessful trials, the unsuccessful studies, etc. So that's one of the reasons I decided to move forward and have John on. So anyway, John, can you just start by telling us about your health issues and when they started?

Yeah. So I have a few health issues that I've had for longer than I can remember since I was a very small child. One is irritable bowel syndrome. I get diarrhea pretty easily. Another, Asperger's syndrome, which I was diagnosed with when I was maybe like 10 years old. And the third is this really mysterious itching that I get all over my body. They call it atopic dermatitis, which was really just medical speak for we don't really know what's causing it. So I've been dealing with that my whole life. Well into my 20s, I had never really found anything that helped with any of it. But something that happened in grad school kind of got me onto the idea that maybe, you know, the Asperger's and the itching might have something to do with intestinal issues, which is, you know, I got a staph infection and then I took an antibiotic and I was really allergic to the antibiotic and it made me break out in hives and horrible itching all over my skin for several days. And that kind of made me draw the connection of, well, You know, maybe stuff I'm eating is causing the skin issues. And that's kind of what got me into, for at first, trying the paleo diet and trying going gluten-free. And after that, kind of looking into the microbiome and, you know, seeing if maybe some issue there might be causing my skin issues and maybe also, you know, the IBS, the Asperger's.

Mm-hmm. And so did you see traditional doctors over the years about those different issues?

Yeah, absolutely. And they, they ran some tests on me and they couldn't really find much. They did give me some— when I was a kid, I did some like psychological drugs for the Asperger's. At first they thought it was ADD and they gave me Ritalin, which made me hyper. And so they quickly quit that because of what— and then I was rediagnosed with Asperger's and they did give me some kind of like antidepressant or something. That I can't remember the name of. And that actually did kind of work for me for a long time as a kid. But then I went off it for a couple of years in college and I felt okay without it. And then a couple of years later, I tried going on it again and it just made me incredibly sleepy. And so I went off it. So whatever it was they gave me and I cannot remember it anymore. It did work for a long time and I seem to have just kind of grown, grown out of the need for it. To the point where I'm better off without whatever it was.

And how did the Asperger's manifest itself?

I'm just extremely, extremely shy. Couldn't really hold a conversation. Extreme difficulty making eye contact with people and very repetitive, kind of OCD-like behaviors. And a lot of that I've just kind of grown out of as I've gotten older. I mean, the social stuff I kind of got better at with deliberate practice, you know, just forcing myself to practice talking to people and looking them in the eyes and stuff. The more kind of repetitive compulsive behaviors, not really totally gone, but definitely have gotten better just kind of over time. So I'm one of those cases and I— and this is actually fairly common. I think something like 20% of people diagnosed with autistic spectrum disorder do just kind of get better as they grow up. And so I seem to be hard— whether you attribute that to anything I did or I just kind of grew out of it, I seem to be in that 20% that have gotten better.

Mm-hmm. Okay, so tell me about the— you mentioned Paleo diet and, and gluten-free. How did those dietary changes impact your issues?

They really didn't seem to. They— so that was kind of a disappointment. Going gluten-free or going Paleo didn't really seem to impact any of these issues, although they, you know, going Paleo did help me, you know, in other respects. You know, I lost some fat, I had a little more energy, but it didn't really help my skin. It didn't do very much for my intestinal issues, maybe a little bit, but not much.

And did— when you went gluten-free, did you go just sort of the standard gluten-free, or did you go all-grain? Well, I guess paleo would be all-grain-free.

I, I tried both. Yeah.

Okay.

I tried both at various points. And the other thing I also have done a couple times is I've fasted for multiple days, which among other things, is a great way to see, in theory at least, a great way to see if you have a food allergy because you're just cutting out all food.

Right.

If your symptoms go away, you can figure you probably have a food allergy, and from there you have to figure out what it is.

Right.

And unfortunately, I wish I'd thought to do that 10 years ago. I only really thought to do that like last year.

And how did it go?

It did not make my symptoms go away other than it did make the diarrhea go away. You can't get that if you haven't eaten in 3 days. But the skin itching did not go away. So that kind of helped me rule out food allergies for the skin itching.

Right. So what made you decide to try FMT or fecal microbiota transplants?

Well, so I got my microbiome tested with uBiome, which is a very good company. I highly recommend this before anyone take action on FMT or anything that drastic.

Yeah, it's covered by insurance too.

Yeah, I guess it is. I just paid out of pocket, but a lot of insurance would cover it. It's only $100 and it's this mail-in thing that, you know, basically you take a little stool sample, which is kind of gross, and you mail it in. But, you know, they look at your microbiome and they give you a breakdown of all the different species and genuses of bacteria and yeast in your biome. And the other thing they do that's kind of cool is they compare it to several different baselines, like here's how your microbiome compares to the average American, the average obese American, the average really fit American, paleo dieters, vegans, alcoholics.

And that was, that was a couple of years ago. How long ago did you do that?

That was more than a couple of years ago. That was like 4 years ago, I think.

Yeah, because I've done a more recent one and it's much less— what you're describing is not what they show, but they do show correlation with your symptoms and different conditions.

I'm sure they've changed their, their whole look over the years. Yeah, because I got my FMT in 2016, so this was 2015 or 2014. Probably, I think it was 2015 that I got it tested.

Okay, well, were you enlightened at all by what you found out from uBiome?

I was, yeah. What I recall is my, my biome was not terrible, but there was one, one type of bacteria that was almost completely missing from my biome, which is not missing in, you know, the healthy comparables like paleo diet.

Was it Ackermansia municiphila?

I don't think it was, but I can't remember what it was.

That's the one I'm missing.

No, that doesn't sound familiar at all.

Okay.

It might have been. And I want to say it was a genus and not a species, but I could be wrong about that.

Right.

So there was one respect in which I more resembled alcoholics than healthy people, despite not really being much of a drinker.

Okay, so that was what prompted you to want to get an FMT?

Yeah, that was, that was to try and restore that, because the FMT, um, the biggest thing it would be likely to help with is if you're completely missing some kind of, uh, good bacteria. Because if you have a, a good kind of bacteria that you're supposed to have and it's heavily depleted but not gone then potentially you can restore that by feeding it food. You know, they're bacteria. They, they multiply pretty, pretty fast. But once one is completely gone— and I want to say this was either completely gone or at least below detectable levels— then you get to a point where it has to be replenished from outside your body somehow, which still doesn't necessarily mean FMT because you can get a lot of this stuff from food. But, you know, that made me think, well, I have been trying eating a lot of sauerkraut and other lacto-fermented foods. I have been taking probiotics. Tried eating healthy. Maybe FMT is the next thing to try at this point.

Yeah. So did you consider doing it yourself at all?

I considered that, and, and reading more and more about it, I just really got put off the idea for safety reasons. I'm— it's just people really emphasize the importance of screening, and I did come to understand that this is not without its risks. I mean, if you don't have a properly screened donor, you could get something that does more harm than good.

Mm-hmm.

You could get something like Clostridium difficile, but you could also just get something that's not inflicting a disease on you so much as just making your biome worse if the other person's just not very healthy.

Yeah. So how did you pick the clinic where you decided to do it?

Yeah. So what I was doing in 2016, I was living as a digital nomad, meaning that I was living out of a backpack moving through various mostly developing countries that are pretty cheap to live in. So I started out in Thailand and was kind of working my way through Southeast Asia for a while, and then was either going to go west through India, Africa, over to South America, or east to South America. Hadn't decided yet. So I started— it was while I was traveling that I started talking to these companies. And the clinics that I talked to, one was in Australia, one was in the Caribbean, One was in Buenos Aires, Argentina. So there are really two things that made me settle on this clinic. One, one was the location. Buenos Aires was really convenient given my plan because I figured I could work my way west over there and then slowly work my way north back home on the end of my trip. And the other one, that was one. Another was cost. It was— I don't remember if it was the cheapest. I think it was cheaper than the one in Australia. I don't remember how it compared to the one in the Caribbean.

And how much did it cost you?

It was, uh, it was a few thousand.

For how long?

For a 5-day course of treatment. I want to say it was like $3,000 or something. I can't remember exactly, but whatever it is, it's probably gone up a little bit since then, would be my guess. It was a few years ago. But, and the third was that I actually talked to the doctor, and he was, you know, he spent more time talking to me than the people at the other clinics He was very personable, very willing to answer my questions and explain how everything works to a greater degree than the other two clinics. The other two clinics, the conversation felt a little bit more one way that they were asking me stuff about my health and assessing me, which you have to do. But I really also wanted someone who would let me ask them questions and was willing to like explain everything and make me feel comfortable with that. I understood the process. Which he did. He was a very nice guy, so I ended up going with him. This clinic was called the Newberry Clinic in Buenos Aires, and the doctor's name was Silvio— here, Najit or Najd or something like that. Very nice guy. Yeah.

Okay.

And so tell me about your experience at that clinic and just during and right after the procedure.

So my experience— it's kind of a little hole in the wall, you know. There's not really a sign outside saying FMT clinic. You just have to know where it is. So I went in, you know, I sit down, I talked to the guy for a long time. And that's kind of how the culture is in Argentina too, that when you do business with someone, they spend a lot of time just sitting down making small talk, which I don't always love everywhere I go. But I loved in this case, I want to talk to the guy a lot. Yeah, a very, very nice guy, very perfect English, by the way. And I think he might even have used to work at the other clinic in the Caribbean that I, that I had looked into. I think so. Yeah, I want to say he did, and then he left to start his own clinic. It's been a long time, but— oh, and I should say, in that Teymount Clinic in the Caribbean, I think they're like a branch of— and they have like another location in the UK or something, right?

Yeah, the original's the UK.

Yeah, yeah. So there are a few of these all over the place. So he— so he talked to me for a long time. He explained to me like how everything works and why why he does things the way that he does, in particular why he, he only offers like 5 or 10-day courses and not one-time transplants, and also why he makes the dietary choices that he does. Because like the Tame Out Clinic, their thing was they want you to eat strict paleo for 2 weeks before the, the procedure. And he doesn't do that. And he says it's because that's not the way you normally eat. And he does want the, the bacteria that are being transplanted to be settling into what your normal routine and your normal biome would be. He did have me restrict my diet a little bit, like no soda, no junk food. I forget what it was for a week or two leading up to it, but it wasn't strict paleo. I forget what exactly his rules were. And then as soon as the procedure was over, he said, all right, stop doing that, just eat normal. So that they could get used to it. But he explained his rationale for everything. I loved it. And then of course, I go into a little room and his assistant sticks a little plastic tube up my butt, and, and that's not fun. And then you kind of hold it in for a half hour, then you go to the bathroom.

Oh, really?

Yeah. So yeah, it's all liquidy. It doesn't stay in for a long time. You hold it in like a half hour. It's not fun. Not as fun as talking to the doctor, but it's not as it's not as horribly uncomfortable as I had feared either. It is a pretty sterile kind of— after 5 days you get a little used to it anyway.

Yeah. And so did you have impacts on your stomach or on your whole body? I've heard of people having, you know, fever or chills or problems like that.

No, I didn't have any kind of like chills or fever or anything. And that can happen. He actually explained this to me is sometimes that can happen because what happens is the bacteria that you're transplanting really go to war with the bacteria that are already there. And so what I recall is he had me in the lead up to the procedure take some kind of like mild antibiotic for like a week or so to, to kind of weaken the bacteria that were already there a little bit, I think.

Or—

and I can't remember if he had me do that or if it was one of the other clinics that wanted to do that and he didn't. Now that I can't remember. No, I'm blanking. I actually can't remember if I did that or not. I think maybe it was one of the other clinics that wanted to do that and he didn't. Let me take that back. I'm not remembering this very well. But he said that that can happen to some people if, if the bacteria that are already there are pretty strong and just don't want to be replaced, that you can get kind of a little war going on in your gut. And that can cause some kind of cold-like symptoms for a while. But in my case, that didn't happen. I didn't really seem to feel any bad side effects. Nothing short-term like that.

Yeah, actually, in your article you said that you were on a low dose of prednisone to suppress your body's immune response.

Yeah, yeah. Not an antibiotic, a prednisone, which is a corticosteroid. So that, that wasn't really to kill the bacteria in my gut, but it was to suppress my body's own immune response. That's right. That's what he had me on. Yeah.

Okay.

Yeah.

And was there any kind of a cleansing or any kind of a colon cleanse that you used before the procedure?

Not really, no, because that— a colon cleanse, I don't think would really accomplish anything that can't be accomplished by just kind of fasting for a while before the procedure, which I think I might have done. But no, there wasn't really any kind of a colon cleanse.

So nothing like, like preparing for a colonoscopy or anything like that.

No, no.

Okay.

I think he probably had me not eat right before or something like that. But yeah, no colon cleanse. And I was definitely still eating. You know, this is a 5-day-long procedure. And before, I've had a colonoscopy and you have to like not eat for a day beforehand. So, so when they're doing this every day for 5 days, you know, to accomplish the same thing, you'd have to not eat for 5 days. So they really—

little impractical.

They can't do that. Yeah.

So tell me about the kinds of impacts you saw soon after the procedure.

So I did, I did notice definitely a decrease in, in the IBS symptoms after the procedure.

So how often would you get IBS attacks beforehand?

Beforehand, once or twice a day, most days, not every day, but most days. And afterwards, that seemed to go down to maybe a few times a week.

Okay.

So a little less than once a day on average. So it certainly didn't go away or anything, but it seemed to get better.

Mm-hmm. And any other—

the skin itching maybe got a little better, but not like super great. And then the social thing, like, it's really hard to say. I mean, I did feel a little bit more confident, maybe a little more outgoing, but it's a little hard to say. And that I did kind of start to very slowly feel more confident and outgoing, not instantly after that, but kind of slowly felt a little more social over the months following this.

And don't they say it takes 3 to 6 months to see the full effects?

Yeah, they do. So, so here's why I I have trouble knowing whether to attribute this to the FMT or not. It's because I was doing this whole digital nomad thing at the same time. Right. So, so here's my life in the months following this FMT is after it was over, a couple of days later, I left Buenos Aires. I went to Brazil for 2 days or for 2 weeks and lived there. And then after Brazil, I went to Colombia for like 6 or 8 weeks and lived there. And after that, I finally got home to the United States where I could finally speak English to people all the time. And because in South America, they're not a lot— not that many people speak English, especially Colombia. So I was finally like back to my normal life and socializing. So it is really, as far as how it may or may not have affected my Asperger's or social symptoms, it is really not possible to disentangle the effects of the FMT from the effects of my rapidly changing lifestyle at the same time.

And probably your joy in coming back to be able to speak English.

Yeah, yeah. So I am in South America in particular. I, I didn't really have friends. I went on like a few Tinder dates and whatever. I spoke to some strangers, but I didn't really have a normal social life or anything close to it. And then I did once I got back home. So normally, if you really wanted to know what— isolate what effects this has had on you, you would want to do this like a controlled experiment where you make an extra effort not to change anything else about your diet or your life during like the month before the FMT and several months afterward. And I absolutely did not do that.

Right, right.

This is— this was as far from a controlled experiment as you could possibly get. I just— I'm never going to be sure what, what to attribute to it, particularly regarding any kind of social symptoms.

Yeah, it sounds like it's hard to know. So did you have any problems? Did you feel like you changed anything in a negative way after that?

Definitely no negatives to it for me other than just the money I spent on it. And certainly it's not a negligible cost, but that's the only negative I could say. I had no downsides. And again, I, I got, I got this through a clinic that properly screens its donors.

And to clarify, the, the 5 treatments, are those from the same donor or different donors?

I believe the same donor. I believe, I believe it would all be the same donor.

Okay. So what prompted you to write the article?

So I wrote the article because I wanted to explain the process that I went through in doing this for people who don't really understand what the process is. And I wanted to also, you know, I don't really write very much about the fact that I, that I have Asperger's and IBS and all this. But I know a lot of people are really desperate for treatments for these things. And are kind of pinning their hopes on FMT. So I really wanted to make it clear that I thought I found it a little bit helpful, but it absolutely was not a miracle. And I also wanted to make it clear that there's a lot of— it's fairly expensive if you want to do it right, and that, you know, there's a whole process you have to go through. So I wanted to kind of educate people and inject a little bit of realism into their expectations. So I hope I did that. I mean, I know my attitude towards it was maybe a little more positive at that time than it is now, only because I was a little bit more ready to attribute any kind of positive effect on my life over the next few months to the FMT. And in hindsight, I've thought just a little bit more about, well, my entire life was just changing completely several times over the next few months. So I'm a little more, little more hesitant about what to attribute to the FMT. But certainly the IBS did get a little bit better, and that I feel comfortable attributing to it.

Okay. And have you done anything since that's helped the IBS more?

Cutting back on caffeine definitely seems to help the IBS. Mm-hmm. And I do notice that cutting back on wheat products seems to help it. Like, I notice I do— I get like diarrhea if I eat a bunch of pizza or whatever. And it doesn't seem to be gluten per se. I've learned more about not just gluten, but anti-nutrients is what they're called, stuff that causes leaky gut and everything. And it's— wheat has a few things that are potentially issues for people. Gluten is one, but there's also the FODMAPs, which are these short-chain carbohydrates you have trouble digesting. And there's phytic acid, which binds to other nutrients and prevents them from being absorbed. So it really could be any of those. Wheat has all of them. But I do notice the diarrhea gets a little bit better if I cut out not all wheat, like I don't care about soy sauce or whatever, but just really big wheat-heavy bread, pasta, whatever. And I've also noticed that really high doses of— not alcohol— caffeine tend to cause the intestinal stuff to flare up. And the other thing I've noticed about the itching is that it can often get worse if I've had a lot of caffeine and/or alcohol. Like the other night I went out, you know, drinking with some, some people, had a couple of margaritas and a beer and a couple of Diet Cokes. And the itching did definitely get worse later that night. But it also never goes away completely, even if I cut out all that stuff. So that seems to cause flare-ups but not be the sole cause of it. So regarding the itching, and I'm working with a doctor on it, there just doesn't seem to be a singular cause to it that I can isolate. Unfortunately, seem to be a few things that help a little, but no one, no one fix. And if there's anything people can take away from this, it's that a lot of your problems may have multiple contributing causes. And so there may not always be just one thing you can do that completely gets rid of them.

Okay, so now that you've gone through the FMT, would you ever do it again, maybe considering a longer course of treatment?

Possibly, uh, but I would need a specific reason to make me think it's likely to work. I wouldn't, I wouldn't do it again just because it seemed maybe mildly helpful this time. I would if I, if I do another uBiome thing and it still looks like my biome is pretty messed up, and particularly if it looks like I am completely missing some species or genus of good bacteria, then I would consider it. And I would also consider it if I have to— if I get really sick and I have to do a really heavy course of antibiotics, I would consider doing the, the FMT again.

Did you ever consider just storing some of your own stool in case that happens?

No, I really haven't. No, I would rather get it from a properly screened donor and from a place that is properly storing it because I really don't know how I think he told me something about like the fridge that they use to store it. And I want to say it is like way colder than any kind of home freezer. Like it's, it's not just a little below freezing or like, because I think my—

absolute zero.

Yeah, not, not that cold. But my freezer goes down to maybe like -8 or like 6 to 10 Celsius. And I want to say he said he stores it at like -40 or something.

Okay.

Yeah, there is some kind of special medical freezer that they use in addition to all the other stuff they do that I would not properly do.

Yeah. So anything further you want to tell us about your experience?

Only that it was not as uncomfortable as I feared. And I, I certainly think it's worth a try if you can get solid evidence that whatever your issues you're dealing with are caused by microbiome problems. Don't, don't just assume that they are because this is kind of the new thing and you're pinning your hopes on it and everyone's talking about it. But if you get your microbiome tested and it is all messed up and you're completely missing some of the things you should have, I think it's worth a try as long as you get, get it through a, a good clinic that properly screens its donors. But definitely try everything else that you can first. Try fixing your diet, try cutting out caffeine and alcohol, try, you know, exercising and doing probiotics. Exhaust all your other options first, then consider it.

Okay. Well, thank you so much for sharing that with us. That was very helpful.

Well, you're welcome.

Okay. Well, I hope you find a cure for your itching and the rest of your IBS symptoms.

Oh, God, yeah, the itching most of all. Definitely the itching.

Okay. Thanks, John.

Thank you.

I hope you enjoyed the podcast. If you liked it, please press subscribe so you won't miss future episodes. And you can find links to John's article and website in the show notes, and you can find me online at HighDesertHealthCoaching.com. So what I do is help women lose weight without counting or cutting calories. So my goal is to help women make changes that they can live with for the rest of their lives so that once they lose weight, it'll stay off for life. So my last two clients, they lost 10 and 14 pounds in the first 10 weeks of working with me, which might not seem that incredible except when you take into account that they didn't make any drastic sudden changes, they never went hungry, and they're prepared to keep up the changes that we worked on together over the long term. So if you're wanting more knowledge, support, or accountability in your weight loss journey, feel free to reach out to me at Lindsey— that's L-I-N-D-S-E-Y— at High Desert Health coaching.com, and we can set up a free 45 to 60 minute healthy and sustainable weight loss discovery session. And I assure you, you will get at least one big aha about what's keeping you from losing weight and keeping it off. So all the links and emails I mentioned are in the show notes, and thanks so much for listening.