How FMT Helped One Woman Read Emotions and Normalized Sound and Touch Sensitivities

This is Lindsey Parsons, your host of The Perfect Stool: Understanding and Healing the Gut Microbiome. Today I'm talking with Amanda, a 32-year-old woman who sought out a fecal microbiota transplant at a clinic in Argentina at age 28 to address her gut issues and psoriasis. But she was surprised when it drastically improved her sensitivity to sounds and touch and her ability to read other people's emotions on their faces and improved her social awkwardness, what she believes in retrospect were symptoms of autism. But before we get to the show, I wanted to say that if you've been struggling to get a handle on your gut issues, and maybe you've tried some stuff on yourself that's not quite resolving, that's the kind of thing I like to help my clients with. I'm a certified health coach, so feel free to set up a free 1-hour breakthrough session with me. There's a link in the show notes for that, and we can figure out together if health coaching might help you get your gut back in order. And I also work with clients to reverse autoimmune disease naturally and lose weight, even if you're already eating healthy and exercising and think you're doing everything that should result in weight loss, but it's just not working. There's no obligation for a free breakthrough session, so don't hesitate to set one up and we can go from there. Now onto the show. Welcome, Amanda, and thanks for coming on the podcast.

Thanks. It's so good to be here.

So let's just jump right in and let me ask you why you originally considered doing a fecal microbiota transplant and how you came to select the clinic in Argentina.

Sure. Originally I decided on a fecal transplant because I had been sick since I was somewhere around 16. And after a really long health journey and just a lot of really confusing, frustrating frustrating milestones, I came across FMT. And at the time, I was more trying to heal some of the kind of gut stuff. I just, I just had a lot of weird gut symptoms. When I stumbled on FMT, it seemed like that was exactly what I was looking for. So I looked for a clinic that was in a country that I would want to visit because at the time it seemed kind of weird. Everyone was a little unsure about it. And so I was just kind of like, well, you know, the worst that would happen is I'd have a great vacation. So I try not to put too much emotion into it. It was more, I'm gonna try this cool thing. It looks like it's supported with a lot of science, but it seems like it's too good to be true. So I figured I'd just kind of go down to Argentina and have a great vacation.

Tell me a little bit more about the gut symptoms you were having.

Yeah, there was a lot of intermittent diarrhea and constipation. I was spending, God, maybe 2, 3 hours in the bathroom every day, kind of towards the end, right before I went. I actually learned Spanish in the bathroom because I was just sitting there for 3 hours, right? Like, what else do you do with that kind of time? And it's good that I did because they do not speak it in the airport in Argentina.

So they don't speak English, which, uh, Which program or app did you use to learn Spanish?

I was just Googling the top 500 vocabulary lists and then I moved on to top 500 verbs.

I love it. Okay. So, and this was about 4 years ago?

Yeah. I was really, really tired by that point. I had what I believed to be CFS and later Duke was able to at least confirm that, Duke Medicine down here.

That's Chronic Fatigue Syndrome. Yeah. So they confirmed you do have it.

Mm-hmm.

So fatigue, gut symptoms, and then psoriasis as well?

Yes. Actually, that was why I ended up with Newberry instead of the clinic in the UK, cuz I thought that'd be cool too. But the late Dr. Nacht was studying psoriasis at the time. So since I had that as well, he was like, oh yeah, great. Come on down. Let's do something about it.

Mm-hmm. So for people who don't know what psoriasis really is, what is that like? Or what was it like for you?

It was terrible for me because it's like a red plaque condition. You've probably seen it maybe, but for me it eventually spread over my entire body. It started around 8, 9-ish years old, and then it just stayed in my head. You couldn't see it at all until I was somewhere in my 20s. And then it just got just out of control. It was head to toe. It was on my face. And no amount of medications, topical, anything would do anything about it.

And itchy?

Oh yeah.

Okay. Sounds miserable. Before we get to the results of the FMT, tell me a little bit about what you were like in terms of social awkwardness and that type of thing before this.

Yeah. So it's kind of weird. I don't know if this changed at some point as a kid or if this was just something that I didn't realize, but before Argentina, I could not read faces. And I think that if you've never read faces and you don't realize how many different channels of human communication there are and how much body language plays into intent and meaning, you just kind of take what people say at face value. So like the people in my life would have to be like, "I am upset," or they would have to specifically tell me something was wrong. I couldn't just say something and then notice that they got upset most times.

And so like sarcasm, would that totally fly over your head?

No, that was what was weird. I could get sarcasm. I just wouldn't necessarily understand what they were trying to reference in terms of popular media.

Okay, was that just because you weren't big into popular media, or—

I mean, no, it was partly my memory. I had a pretty bad memory for stuff like that. It was probably also that word associations were always really difficult. Talking was always difficult. I always preferred text or chatting over like instant messenger.

And so how did not being able to read faces manifest in your life?

I mostly just made friends with men and it was okay. I, I'm an engineer by trade and I've always kind of been in engineering, so it wasn't as bad as I think it would have been if I tried to do a different career.

Was there other parts of the social awkwardness?

It was mostly just the ability for me to recognize other people's feelings. I could kind of recognize social situations. I could definitely do anything that was formulaic, and I didn't really feel super awkward until my mid-20s when I started hanging out with a lot more women.

What made you feel awkward in those situations?

It would seem like something happened in the group and then people would leave, and I would eventually find out people were upset after, or that I said something that upset them, and it would not have occurred to me that it would upset them, and it would not have necessarily upset a group of guys.

And it didn't register, like you didn't see their faces kind of fall as you said it?

Yeah, Exactly.

Okay, so tell me about how the FMT went down, how many treatments, over what period of time, etc.

So it went down in June 2016. It was 10 total treatments at Newbury Clinic. We started on a Thursday, so we went Thursday, Friday, we took a break for the weekend, and then Monday through Friday, and then another 3 days after that. So it was a total of 10 days with the 2 weekend breaks in the middle. The staff did it for me at the time, and then I brought 10 samples back with me to the United States.

No issues getting through the airport with those?

You would think. No, I was just told that I just needed to present it as supplement, and I guess that's what it's classified as.

Was it freeze-dried or in capsules?

Yeah, yeah, it was in dry ice.

Oh, it was in dry ice, but it was actual stool. It wasn't like the capsules.

No, it wasn't stool. It was these little plastic containers of liquefied stool that was somewhat cleaned out, but it still had enough of a smell that maybe, I don't know to what extent they could clean it really.

Like, was it brown or was it white? Yeah. Okay. So it looked like stool. Got it. And how did they administer it? Did they use a syringe and a tube or, I mean, to give it to you to administer, I should say.

They administered it. Which I was really happy about because I was so nervous about the whole thing. It was a syringe and a tube. They just use the syringe to take the material out of the plastic container and then they put it into the tube. It's actually really easy to do yourself. I later did it myself in the United States and it was pretty easy.

And so you brought them back and then immediately after you finished, started the next ones, or what did you do?

I waited a couple weeks to see what would happen because I wasn't sure if I would have to continually take it the rest of my life or if it would set at some point, like if the bacteria would start to maintain itself So I waited several weeks, I believe. I think I waited at least 3 to 4 weeks and I started to feel myself progressing. And that's when I would do one more, like a Saturday, and then I would just wait like 2 or 3 weeks. It seemed like it was on a 3-week cycle for the longest time, and I never fully understood that.

And so you just spread them out as much as you could?

Yeah, until I ran out.

And what were the immediate effects as you first started doing the treatments and right afterwards?

On day 4 of the Newberry treatment at Argentina, I just woke up and felt completely different. It's like wearing horse blinders almost. Up to that point, I was just not accessing all of the human experience. I don't know how else to describe it. Everything was different. Sound was different. Taste was different. Light was different. It was just like I was missing a lot of stuff. Probably it's similar to like when I started wearing glasses. I waited way too long to get glasses. I waited until my 20s and I really should have had them around 12. And it was like that. I put them on and suddenly I just realized there's detail and there's color to things.

You mentioned sound sensitivity. I realized you had mentioned that before and we didn't dig into that. What was the situation with your sound sensitivity prior to the FMT?

I have always been slightly sound sensitive in the sense that I don't like high stimulatory environments. So like I've never been to a rock concert and I don't have any desire to go. Anything that's very loud, really involved, I don't usually like, or big groups of people, that sort of thing. And that was always the case, but it got a lot worse in my mid-20s to the point where I got a puppy at some point right before I went down to Argentina. And I remember he was sort of walking across my wood floors. I had just replaced the whole house with wood floors for allergy reasons. And he starts walking across the floor and I just lost it. I don't know what it is about that sound. I still don't really like it today, but I can handle it. You know, it's just fine. It's slightly irritating, but then I just lost it. I just melted down.

Anything happen with your constipation and diarrhea and all those issues?

Yeah, that stuff got a lot better. My skin didn't change at all. It— completely did not change, which was weird, but everything else got way better. The social awkwardness got better, the sound sensitivity got way better, my energy level got better, my ability to kind of connect words in my head got better. And I hadn't really explained that, but I was always a completely visual thinker. So like, if you told me something, I wouldn't remember it and I wouldn't remember how the words connected, but if you showed me a picture, I would remember that forever. And that got way better. I could kind of connect words, I could remember things from pop culture, I could remember the plot of a TV show, and I could not do that before. Yeah, I mean, everything except my skin, ironically, got better.

Okay. And have you since found something that helps your skin?

Yeah, I take Solara now and that fixes it pretty much completely. Good.

I'm glad to hear that. So now when we talked before, you said that in retrospect, you think that you may have been on the autism spectrum.

Yeah. I don't know how else to explain that because my understanding of autism is pretty limited. And I was told that it's something that you have from birth. You don't develop it. Maybe you sort of develop it around 3 or 4, but not really. You kind of always had it. And then you have it through your adulthood. There's no cure. There's no even helping it. I do kind of side-eye that now, obviously, based on my experiences, but I can't seem to find hard data on how many people have experienced this change. So I don't know.

And so what made you think that that might've been the case though?

Before, if I pulled up a symptom list of what women with autism experience, not what men experience, but what women experience, I would say I had that exactly. I had like the obsessive interest, the lack of care about my physical appearance, all of the social awkwardness and the sense that something is wrong, or the sense that I'm anxious about something, but I don't really know exactly what it is. The avoidance of high stim and high social environments, only having one best friend and then just not caring about social connections really too much beyond that point. All of that stuff, I would say, and, and the texture sensitivity, the sound sensitivity, all of that stuff, 100%, it described my experience exactly. It's just weird that it disappeared after FMT and everyone's telling me it's not curable. And I'm like, but this is my experience.

Yeah, I know. Have you listened to my other podcast with the researcher at Arizona State?

Yeah, I loved it. I was like, finally someone is telling the truth.

Indeed. I'm all behind this sort of self-curing of whatever you can. And I love that there's real research going on too that's supporting it. And that may ultimately result in some FDA-approved material that people can get ahold of. Did you consider trying to do it yourself in the US and finding a donor before you went to Argentina?

I don't know if I just wasn't looking in the right places, but in 2016, I was told that nowhere in the United States would give it to me unless I gave myself C. diff, which just seemed like a bad idea.

I've often considered if somebody did have C. diff, that they would be well served to lie about taking the antibiotics and saying, "The antibiotics didn't work. Yeah, I've tried them twice. Now I'm ready for the FMT." But they'd have to wait for however long it takes to pretend to try them. Because their efficacy is something, what, in the 20s? And the FMT's efficacy is something like 94%?

I don't know why it's not a first, especially given antibiotic resistance. I don't get it.

I don't think there's a thing more about it other than the yuck factor. And perhaps the lack of donors or the expense of getting to donors versus the ease of writing a prescription. So then when you spread out those FMTs, the remaining 10 that you had, After that, were you able to stay stable?

About halfway through, I didn't do exactly 3 weeks, so somewhere around October 2016, I experienced the worst depression of my entire life. I think what happened was that the power went out and one of the samples got bad or something, because it was right after I had like 6 or 7 in at this point doing the FMT, and all of a sudden I just got the worst depression of my life and I was super anxious. It was really, really bad. So at that point I sought mental health. I'd had depression, anxiety issues up to that point, but not at the same level. And so I don't know if it was just like I left the fridge open or something and a sample went bad, or if it was completely unrelated. I don't know. There was a lot going on at that time, but I totally forgot the question.

Whether you had stabilized.

Oh yeah. Yeah, that happened. And then I, I waited like 3, 4, 5 weeks. I was incredibly depressed. I was going to therapist. It wasn't helping. And I was like, what is going on? And then my partner at the time was just like, I mean, what's the worst that would happen? What if you just tried another transfer? And he's like, unless they're all bad. And luckily I had saved a couple in my friend's fridge for exactly this reason, in case my power went out, because the power wasn't great. So I was like, okay, so I threw out the few that I had left, and then I used the ones I had left in her freezer, and everything was fine, and it went back to normal. So I don't know what happened there. I also was going through a lot of emotional stress at the time though, so could have just been a coincidence. I ended up doing neurofeedback for that reason.

Well, did that work for you?

Amazing.

We actually just had a guest that talked about electrogastrograms and electroencephalograms and dealing with gut issues via neurofeedback?

It bounded the depression. And what I mean by that is the way I experienced depression was just a bottomless pit of despair. You just feel sad. And it's not like normally when you feel sad about something where you cry and you feel better. It was like you cry and then you feel worse and then you cry more and then you feel worse about that. And like, you just keep kind of going down into this, this deep, dark pit and it just keeps going. It feels like it'll never end. After neurofeedback, every single time that I was depressed, it felt like it had an end. Like I could see the bottom of the tunnel.

Do you think the FMT helped with the depression, or you're just not quite sure which helped?

I definitely was less depressed overall after the FMT, and I think that part of that was that I realized essentially I had been misled my whole life about how to achieve a health journey, that I can do it myself, that I can use agency and heal myself, essentially. But it was also just that now I knew I had something that would help, that would help a lot, and I had more obviously in my friend's freezer. So it gave me hope. It made the depression a lot farther apart. I don't know what happened October, but neurofeedback really helped. Doing another treatment of FMT really helped. So other than that, I would say I got more stable over time. For the most part, it was just all up from there.

And then what about the gut stuff? How's your digestion now?

I continue to have allergies. I don't think I mentioned that at the beginning of the podcast. I was hoping, hoping, hoping FMT would do something about the allergies. It did. It fixed a few of them, but not as much as I would have hoped.

Was this like seasonal allergies or food allergies?

Food allergies.

To what?

Well, so 2015, everything. 2016, when I did the FMT, I was still allergic to wheat, corn, and walnuts, cardamom, a whole bunch of stuff.

And would you have literal allergic reactions?

No, I never stopped breathing. My brain would just shut off. I'd stop remembering where I am or how to get home or what my address and phone number is.

Pretty severe.

It would just go for days and weeks sometimes. I would feel like crap for weeks after having wheat. Wheat was always the worst.

How did you discover things like cardamom?

Allergy test that I'm trying to remember the name of and I'm blanking on in 2016. And it gave me a red list, an orange list, and a green list of safe foods. I mean, there was almost nothing in the safe food column, so I don't know how helpful that was. I just basically avoided the red column.

Yeah. Well, when you get that many, usually you're looking at a leaky gut situation and it's not a true allergy situation.

That's kind of what I figured. I was like, well, at that point, if I'm allergic to everything, avoidance is clearly not going to work for me. So I was hoping FMT would help and it did. It made the reactions a lot easier instead of being 2 weeks long, it was a little bit more mild and it would be more like 3 days.

Do you still stay off of wheat? And what did you say were the other big ones?

Wheat, walnuts, and cardamom, and lentils, I think, were the 4 big red ones. I would just be wiped out for weeks if I ate them.

Do you still stay away?

No, I'm actually in complete remission now from everything.

So you can eat all those foods? Great. Well, I did want to ask about— so the Newbury Clinic, you mentioned that the doctor passed away. Did the clinic let you know about that?

No, I think I saw it in the Facebook post on the FMT group.

I did check Google to see if somebody else had taken over, and the clinic page— well, the Yelp shows it as closed, and the clinic's original page has text with Chinese writing, so.

Oh, that's so sad. They were so nice.

Yeah, I guess they didn't find a doctor who wanted to take over. Maybe they'll reopen at some point. So anything you would say to somebody who's on the autism spectrum who's considering FMT?

Oh yeah, I think that going into it with realistic expectations is good. I think that It probably won't get worse and it may get a lot better, especially because I feel like there's a general lack of understanding in the neurotypical community about how autism and Asperger's are a little bit different. There was a lot of anger caused by combining those two terms specifically because to me and to a lot of the people who either identified with the spectrum, had siblings on the spectrum or whatever, Asperger's is a little bit different. I feel like the autism side is the texture sensitivities, the sound sensitivities, the stuff that really makes it suck. I don't necessarily think that the Asperger's side is all that bad, especially if people are really understanding. That's kind of more the social quirk side. I feel like the autism side is the stuff that just really makes your life just uncomfortable to live every day. That was easily what got better on FMT. The social stuff helped too. Other stuff that I did later helped that, but what really, really got better was just that my life wasn't uncomfortable to live. I wasn't just existing anymore. I was actually starting to enjoy things.

So did you used to have fabric sensitivities and things like that?

Yeah, I cut the tags off every single thing that I've ever bought immediately. Like even the soft fabric tabs just now. There's just certain types of fabrics that I would not wear. It used to be jeans. I used to only wear sweatpants.

Yeah. Well, that would describe both of my children, but I don't think that, uh, I don't think the diagnosis is there, but they're boys. And, and what about someone who might have concerns that it's going to change their personality or change their giftings if they have specific giftings?

I think that's a legitimate feeling. I understand where it's coming from. Ultimately, it's everyone's choice. Yes, it might change your personality a tiny bit. I definitely hated puns and any kind of wordplay before FMT, and now I love them. I'm actually kind of known for them now. I don't know what happened there. I don't know if my donor was really into that, or just because my brain structure changed, it allowed me to express myself. What I would say is that the core of who I am has not changed. I'm still incredibly nerdy. I'm still an engineer. I still think of things in a visual way. What changed is kind of more my potential. I feel like it turned a lot of different core components of me on that I did not have access to before. I don't really feel like it took anything away.

Did you have any topics— you mentioned obsessing on things— were there things that you used to obsess on and know a lot about that you're more lightly attached to now?

No, I don't think my love of Star Wars or trains will ever go away.

Awesome. Okay. Well, is there anything else you'd like to tell folks before we wrap it up?

I guess I just want to say that if you're in a position where you are being really frustrated by what you're being told, I'm not saying break up with your doctor, but I kind of do think that maybe you should open yourself to safe other experiences, things that are scientifically supported. I think that it's just a mistake to believe that your doctor knows everything. They're human. They make mistakes. They're probably stressed out. They have a busy job. And I think that it definitely wouldn't be a bad thing to look into other safe options.

I really liked what you were saying about that sense of agency, because I think it's important we all have that with regard to our health.

It's so important.

And until you get that, you won't solve your health problems.

Yeah, no one cares more about you than you.

That is the truth. Okay, well, thanks so much for coming on the show. I appreciate it.

Yeah, it was great being here.

Thanks for listening. Don't forget to hit subscribe, and if you're a regular listener, consider setting up a $2 or $5 a month donation on Patreon to help support the show. You can also follow my High Desert Health page on Facebook or join my gut healing group on Facebook, and I'm also on Instagram at @high.desert.health, and there's links for all that in the show notes. Thanks for listening, and here's wishing you all the perfect stool.