Adapted from episode 47 of The Perfect Stool podcast with Jane Sullivan and edited for readability.
Lindsey:
So we’ve had various people on the blog who have talked about their FMT experience, but none with bipolar disorder. I’m really excited to hear about how this all came about for you. So why don’t we start with your basic history of when you were diagnosed, when you first had symptoms, and how long that went on before FMT became an option.
Jane Sullivan:
Bipolar disorder is a very difficult illness to be diagnosed with; it usually takes quite a long time for people to actually be diagnosed. I had experienced serious mental illness for 13 years before I was even diagnosed with bipolar disorder. Growing up, I had quite a lot of adverse childhood experiences, you know, I had a very stressful childhood, my mother was physically and mentally ill, and that really affected her parenting ability. And that caused significant trauma in my childhood, and then a lot of bullying. So it wasn’t a happy childhood. But I was functional up until my mid-teens when I was, unfortunately, groomed and molested by my uncle. This trauma put me into a health spiral very shortly afterwards, and I developed chronic tonsillitis and then ended up taking multiple courses of antibiotics over a two-year period. In Australia, we have free health care, which is fantastic, but if you need surgery, you get put on a waiting list. I needed to get my tonsils out, but I kept getting pushed down on the waiting list. Every six weeks or so I was given another course of antibiotics because the tonsillitis would flare up, and it was only until I got glandular fever and was hospitalized that they were finally taken out. From 16 to about 18 I took around 12 different courses of antibiotics.
Shortly after the abuse is when I fell apart and became basically non-functional. The trauma, for sure, was the trigger for serious mental illness. But knowing what I know about the gut microbiome and then the success later with the FMT resolving my symptoms, I really think that the trauma probably was the stress that affected my immune system and made me ill, and then the multiple courses of antibiotics must have just knocked out my gut microbiome into a state of dysbiosis and knocked out some keystone species that were really important for mental health.
So from the age of 16 onwards, I basically dropped out of school, I couldn’t work, I couldn’t study, and life from the age of 16 onwards was a living hell of just trying to not die. Because I became suicidal, I became disabled by serious mental illness. And then I wasn’t diagnosed with bipolar disorder until I believe I was 29, and this was after a few manic episodes where I became hospitalized. I believe I was diagnosed in 2011, and my psychiatrist was excellent, and we experimented with a whole lot of different drugs to try and find something that worked. And eventually, we found three drugs that stabilized me to the point where I wasn’t suicidal 24 hours a day. But still, I had no quality of life, and I was extremely disabled. I needed to be taken care of by my family, my partner and basically government assistance.
Lindsey:
Now, before you continue, let me just start by saying I’m so sorry for everything that you went through.
Jane Sullivan:
Well, I mean, trauma happens to a lot of people, it’s actually not an uncommon story.
Lindsey:
Yeah. And I’m wondering, you mentioned your partner and such. So you describe being completely disabled, but obviously, life to some extent was going on in the midst of all that, what kinds of things were you still able to do in the midst of all of this mental illness?
Jane Sullivan:
There were times where I was able to work in my early 20s. I worked in call centers, doing insurance call center work, or working as a medical assistant. There were times where I was functional enough to work, but the longest I was ever able to hold down a job was 12 months, and then I would relapse into serious depression. There were various levels of functionality. Just because I could work at times doesn’t mean that life was enjoyable or easy. It was a really big challenge; it was psychologically challenging to work, etc. There were brief times where I was more functional than others. And in my late 20s, I was functional enough to travel to Canada and live in Canada for a year or so.
While I was in Canada, another trigger that maybe amped up the bipolar was taking drugs at a party. I took a lot of drugs, started with magic mushrooms, and then when I lost my mind, I took everything that was there. And when the party ended, it didn’t end for me. And I ended up in a psychiatric institution in Canada, which was very frightening for my parents to get a call at 5 a.m., saying your daughter has lost her mind. The drug experience set something off in my brain or my gut, and from that point on, I rapidly cycled between suicidal or severe depression, and severe mania or psychosis where I would lose touch with reality and have the experience of leaving my body and traveling intergalactically with my alien friends. So before the drug experience, I was severely mentally ill, but had periods of functionality where I could work at times. But after the drug experience, it was rapid cycling, and I was basically almost completely non-functional. And I spent two years in and out of the hospital. But magically, in that time, I somehow met my husband.
Lindsey:
So you met him in Canada?
Jane Sullivan:
No. After I had this process of being in and out of hospital, I needed some actual kind of rehabilitation. I think what people don’t understand about the public psychiatric health system is that its emergency care. When you go into hospital you’re a danger to yourself or a danger to others, and then you get well enough to a point where you’re no longer a danger to yourself or to others, and you’re kind of sent back in the community, which doesn’t mean that you’re well or rehabilitated. So I actually had an opportunity to live and work on an organic farm, because a job that I did do previously was work as a landscape gardener.
Being outdoors and being in nature had a noticeable impact on my mental health. I took myself to this farm, and I had a routine and I was outside all the time, and I had my hands in the soil. That was kind of helpful in trying to stabilize myself and try to work out how I can possibly live and survive with this illness. Because in those two years, I tried to commit suicide multiple times, and if you succeed on your first attempt, you don’t see the damage that it causes to your loved ones. But if you fail in your attempts, you are confronted with the trauma that your suicide attempts caused to your family. And basically, I saw the damage that I was doing and decided that no, I can’t kill myself, which kind of made me feel really trapped in this life, in this body, and in this incredible suffering.
So living on the farm, I was trying to work out how I was going to live and survive and function and be in the world and on that farm. I say I found this magic frog in my raincoat. It was a very beautiful frog and I didn’t know how to identify it and I wanted to know about it. And I remembered that my sister had this friend Alex who was a zoologist who knew about frogs. So I sent him a photo of the frog, and we chatted, and we connected and seven years later, we’re married.
Lindsey:
So that’s amazing that in the midst of all that you still managed to meet your partner and your future husband.
Jane Sullivan:
Yes, that’s pretty incredible in itself. It was a period where I was kind of okay, kind of well, and so I moved to the middle of nowhere in rural Australia to live with my husband, and I’ve been out here seven years. Before the whole poo transplant, gut microbiome stuff, just moving to the bush and spending an inordinate amount of time in nature was very healing, very helpful, and reduced my stress. It was helpful, but I was not functional. I didn’t have much of a quality of life and he was really my carer.
Lindsey:
So how many different medications Did you try before you settled on the few that kind of stabilized you but with no quality of life?
Jane Sullivan:
At least 15.
Lindsey:
And do you, having gone through that experience, have any general feelings about the mental health institution and the way we treat it?
Jane Sullivan:
I have a lot of feelings about it. Medications absolutely saved my life. I am not against medications; they currently are the best we have to offer. Unfortunately, for a lot of people, they’re not good enough. There are vast amounts of people that have bipolar disorder, who have success with medication, reducing their symptoms or eliminating their symptoms to the point they can live full fulfilling lives with careers and families. I just happen to not be one of those people, unfortunately. There are many people that have bipolar disorder, who even on medication, have a very limited life, and psychiatric care. I’m exceptionally grateful that I live in a country where I had access to free psychiatric care, which absolutely saved my life, but it is not rehabilitation. It saved my life. It didn’t give me stability. It’s pretty great. But it’s not good enough. And it’s not a solution.
Lindsey:
Yeah. So how did you hear about fecal transplants? And how long did you sit with that information before you moved on it?
Jane Sullivan:
Yes. Well, my wonderful husband, because he is an ecologist, he has an understanding of ecosystems and the human body, and the gut microbiome is an ecosystem. Because he reads a lot of journals, he doesn’t even remember where he came across it, but he read an article in 2016. Actually, the first time he put the idea of a fecal transplant to me was when he read an article about how obesity has shown to be transferable. The fecal matter of an obese person was put into a germ-free mouse, and then they rapidly put on weight and vice versa. And an unfortunate side effect of one of the medications that I was on was rapid weight gain. So before being on this medication I was 60 kilograms. And then within six weeks, I put on 25 kilograms.
Lindsey:
Yeah, wow. That’s like 50+ pounds.
Jane Sullivan:
In six weeks.
Lindsey:
That’s a lot of weight to gain quickly.
Jane Sullivan:
I know. So it was like, oh, great, thank you, I’m insane and obese. Thanks for that. So Alex put forward the idea of, hey, I’m a tall, wiry, slender guy, maybe this could help you with your weight loss. And I didn’t love the idea because I’m not doing that to lose weight. That’s a crazy idea. So that’s when he first kind of put the idea of fecal transplants to me. And then a few months later, he happened upon another study, he can’t find this study. He’s been looking for it. But it was a mouse study or a rat study that showed that germ-free mice were given a fecal transplant from a mentally ill person, and they started to exhibit mental illness symptoms, and vice versa. And that really, really intrigued him.
And he thought, well, this is a preclinical mouse study. But you know, we test all our pharmaceuticals on mice, we share a common ancestor, so it didn’t seem that far-fetched that this could possibly help me. He’d seen the suffering that I that I had, and it was daily and incessant, and I guess, you know, he wants to help and wants to fix me. He pushed for this idea that maybe this could help me. Maybe this is a gut issue. And so I sat with the idea for six months, because I was like “What? You want to do what? That’s disgusting.”
And up until that point I’d never even heard and no one had even mentioned, the gut microbiome, or its potential link to mental illness. It was just such a foreign concept to me. And then what made me finally decide to truly think about it was when my grandmother turned 88, I believe. And she’s in perfect health, which is amazing, and she’s now in her 90s. But it also horrified me because it’s like, oh, my gosh, I have actually good genes, I could live for another 50 years, I can’t do another 50 years of this. I’ve already done 18 years of this, and I can’t survive it. It was out of desperation. And it was kind of like, if this didn’t work, we were going to have the discussion of how do I end my life without him going to jail? The level of suffering that I was experiencing was unsustainable.
Lindsey:
Did you look into doing it at a clinic, because I know a lot of people go to Australia to get their fecal transplants?
Jane Sullivan:
Well, at the time, we weren’t educated enough. We didn’t realize that there were clinics in Australia that offered FMT, but I doubt that I would have been accepted into one of those clinics. Anyway, there is a person that I’m in contact with, a friend who has been accepted and actually started FMT yesterday for bipolar, but he got into the clinic because he also has gut issues, and I didn’t have gut issues. I didn’t have any IBS symptoms or anything like that. This was in 2016. We felt there was no option to do it, except DIY, but I was hesitant to even try it without speaking to my psychiatrist first.
And I’m very grateful and very lucky that my psychiatrist is a pretty cutting-edge guy who seems to stay up to date with the latest research and I live so far away from him that we had a telehealth appointment. I just called him up. I was very hesitant to mention that we were thinking about doing this, but I said, Doctor, you know, what do you think about fecal transplants and bipolar? And he goes, “Jane, it’s the medicine of the future. In 20 years, I’ll be out of a job, they’ll be able to analyze your gut microbiome and see what species you have missing and give you a tailored probiotic. And all your symptoms will go away. Why do you ask?” I was like, well, we’re thinking about trying fecal transplant for my bipolar symptoms, and there was a bit of a pause. And then he was like, well, I’ll be very interested to see how that turns out. Tell me how that goes. Which was kind of like a thumbs up from him. But then he followed that with, you know, Jane, the research is showing that there is a clear link between the gut and the brain, but it’s all preclinical. There hasn’t been a human trial. So that was what gave me the confidence to go for it. I’m lucky that I have an understanding psychiatrist. And I was definitely lucky that my husband was a perfect and safe donor and one of these unicorn people that have like, never had an illness and no history of mental illness. No history of gut issues, no allergies.
Lindsey:
No allergies. Wow. Yeah, that is a unicorn.
Jane Sullivan:
Yeah, and was born naturally, breastfed, grew up around pets, has been crapped on by a million different types of Australian animals living in the bush, eating with indigenous people, and anyway, just a really healthy guy who hasn’t really experienced stress in his life.
Lindsey:
Yeah, wow. Had you tried any probiotics or any kind of supplements to try and help with your mental health at all along the way?
Jane Sullivan:
I had. I had discovered the work of the Walsh Institute with regards to nutrient therapy. And I saw a special GP who had been trained in looking at nutrients, like vitamins, minerals, etc. to see if there’s an imbalance. I got all these tests done and then I was given a tailored supplement plan and it didn’t really help. I didn’t try probiotics because they were not really regulated, especially at the time too. It was kind of like there wasn’t a huge amount of evidence that probiotics could be effective, I guess. I don’t know. But we kind of figured well, FMT is like the ultimate probiotic.
Lindsey:
Right. Right. So you kind of jumped straight from that. I’m curious, did they test your amino acids?
Jane Sullivan:
I think they did.
Lindsey:
So let’s get to the FMT. So you finally decided you’re going to do it. Did you have your husband tested for anything before you did it? Or did you just jump in?
Jane Sullivan:
Well, I hesitantly say that we jumped in and for anyone reading, don’t do that. That is extremely dangerous. We didn’t get him tested. He has since been tested, because he’s been a donor to other people. We found an FMT clinic in Australia and went to their website, and it had the donor questionnaire, donor history, etc. and the exclusion criteria, and we knew his history enough that we thought he was safe. Luckily, he was, but he could have had some kind of parasite or something, right? We were reckless, and we were lucky. But yeah, that’s dangerous. And we’ve kind of figured that the fact that he’s never experienced any kind of mental health problem would just suggest that he had the right microbes that I am missing, potentially. That was his theory.
We started FMT in November 2016. And really, I was highly skeptical about it, because there was no precedent for doing it for bipolar. I joined all these FMT forums and was asking, has anyone tried this specifically for mental illness, and I couldn’t find anyone. We didn’t know how often to do it. So basically, we just did one FMT, via enema, every couple of weeks, maybe every two weeks, and at that time, I was severely depressed, like severely depressed, barely able to get out of bed, barely able to even look after my basic hygiene, level of depression. I didn’t experience any improvement at all for three months. I don’t even know why we kept going. I just kept trying, I guess.
And after about the sixth FMT, and about the three-month mark, something started happening within, and it was like, something started to change. And I remember that my depression just started to subside. It was like this bell curve of the depression starting to get less and less and less and less and less and less. And it was like, Okay, this is actually working, let’s do more. And there was a specific day, Lindsey, where I woke up and I had this strange feeling that I’ve never felt before of an adult, and it was like, do I feel good? Is this what feeling good feels like? It was confusing, because I had never felt good before, I never was not depressed, really, since the age of 16. It was just various levels, the spectrum of depression. And the only time I felt good was when I was hypermanic, and feeling good would soon turn into, you know, I’m the Savior of the world. I’m here to save humanity. And then I would start to see aliens, etc. So this good feeling just felt stable.
And there was a day where I stopped being depressed, and I started feeling good. And that good feeling just continued day after day. And it was this exponential increase in this feeling good. And of course, I started to be a bit worried, when am I going to start seeing aliens? When am I going to feel ecstatic? When am I going to be hypermanic, and it just didn’t happen. I just started feeling better and better and better. About maybe the six-month mark, all my symptoms were gone, I was no longer depressed, I felt amazing. And then I started to even have motivation. And I started to have confidence and feel joy for no reason and feel happy to be alive, which had never happened in my adult life. So that was really incredible. I felt amazing, didn’t have mania, wasn’t depressed, and it was like, wow, this is what it feels to be a normal human being.
I thought the test to see if it had actually truly worked was to try going off my medications, which is always a dangerous time. And for anyone who has bipolar one disorder, which is what I have, you are medicated for life, basically. And so I had tried to go off my medication many times and always ended up in a psychiatric institution because it’s just extremely dangerous. So my psychiatrist hesitantly agreed for me to be weaned off my three medications. Lithium was to stop me being depressed. Lamotrigine, I believe, was to stop me being manic. And then Seroquel was to help me sleep and to stop me, if I started to be manic, and it took a few months to wean me off, but still, it was too quickly.
He took me off too quickly. And I did have my last manic episode, in September 2017. And it was quite severe. But that was the last time I’ve been manic. So I was extremely manic in the middle of the bush in Australia, three hours from a hospital, and it was dangerous for me to get into a car, I couldn’t get to hospital, and my husband was unwilling to call an ambulance because they would have called the police on a mentally ill woman. And I was actually violent. I’d never been violent before in mania, but I was violent. I don’t really know what was going on there. There were other circumstances around that time. But my husband was really worried that if he called the ambulance and then the police, and then I might be violent, and then I would be shot.
Because it happens. It actually happened around that time that a woman in Melbourne had a manic episode and was on the street. She had a knife in her hand. She wasn’t attacking anyone. But the police showed up and within a few minutes, she had been shot dead. Well, that is actually a reality. Right? The thing is, he was stuck in the bush with this very mentally ill woman who didn’t sleep. And antipsychotics weren’t bringing me down. But then he remembered reading this case study of a woman who had GI surgery with bipolar and that the GI surgery triggered mania and they couldn’t give her anti-psychotics. So they tried giving her activated charcoal, there’s evidence that maybe the activated charcoal would soak up these inflammatory cytokines in the gut that somehow cross the blood brain barrier. And it worked. So Alex gave me activated charcoal, and I came down within three days.
Lindsey:
And how long would a manic episode typically last?
Jane Sullivan:
I wouldn’t come down for 15 days, at least. It was incredible to see. You know, my psychiatrist was guiding him to give me like high doses of antipsychotic, which wasn’t working. It takes a long time for that to work. But yeah, activated charcoal brought me down to a safe state. Like I was still manic, but I was not dangerous. I wasn’t dangerously manic. It was two or three days and since then, there have been other people who have had success with activated charcoal as well for mania, which I think is really interesting.
Lindsey:
So did he put you back on the medication then at that time, and then did you then have to go back again and wean off?
Jane Sullivan:
I didn’t go back on medications once I came down from the mania. I mean, I was on Seroquel. I was on antipsychotics. When I came down from the mania I didn’t go back on lithium or lamotrigine. And then eventually, over time I was able to come off Seroquel. So yeah, FMT definitely resolved my bipolar symptoms in the sense that I no longer had depression. After that last manic episode, I haven’t experienced mania. I’ve basically been well for the last four years and in remission, and I say the word cure, but that’s a very controversial term. So I’m trying not to say that because I think it ruffles people.
When I said that, I think I was getting overconfident, that maybe I’m never ever going to get ill again. And then in 2020, I picked up three viruses, none of them were COVID. But my husband and I were doing some conservation work in the tropics. And I got bitten by a mosquito that had this virus called Russell River Fever, and I became very ill. And with incredible fatigue, I had post viral fatigue for six months, but at the beginning, I actually experienced mild depression. And I hadn’t done poo transplants for a couple of years. I thought, well, it worked before. Let’s try it again. We did one fecal transplant and within two days, the depression had lifted. I think potentially, I might have always have a weakness there. Even if I remain well, I know that I will have to continue to look after myself properly.
Lindsey:
Okay. important question. Have you stored some of your husband’s poo in the freezer? In case he gets sick and has to take antibiotics and he no longer becomes a source?
Jane Sullivan:
Maybe we should do that. But like, how long can you store poo in the freezer?
Lindsey:
Well, you know, maybe you freshen it up every six months. But I mean, if he has to go on antibiotics and ruin his perfect microbiome, then you could lose your source.
Jane Sullivan:
Well, does he have a perfect microbiome? I don’t know if there’s anything particularly magical about his microbiome.
Lindsey:
Well, I can tell you there are a lot of people out there struggling to find a good donor. So the fact that he had a good enough microbiome.
Jane Sullivan:
That’s probably a good idea. Thank you, Lindsey. We’ll do that.
Lindsey:
So how frequently at the most frequent were you doing the transplants?
Jane Sullivan:
It was every couple of weeks. We didn’t know what we’re doing. There was no precedent.
Lindsey:
Okay, so maybe if had you done it much faster, you might have seen resolution a lot quicker.
Jane Sullivan:
Well, that was a theory when my two older sisters, who have bipolar two disorder, decided to give it a go.
Lindsey:
And so tell me about that.
Jane Sullivan:
Right. It was kind of frustrating because I had had this miraculous transformation. And my psychiatrist even said that if he hadn’t witnessed it himself, he probably wouldn’t have believed it. It’s an incurable illness, you don’t recover. It’s unprecedented that I have been in remission for as long as I had, especially not being on medication. It just doesn’t happen. Which is why I continue to say that I’ve cured it. Anyway. So in 2017, I was well, and my sisters saw this, and I was like, “Hey, guys, you’ve got bipolar disorder, you really struggle. How about you give it a go?” But there’s a psychological wall that you have to get over to consider taking someone else’s feces.
Lindsey:
Yes, I spent three years dabbling in the idea before I finally took the plunge.
Jane Sullivan:
Alright, so you’ve taken the plunge as well?
Lindsey:
Oh yeah.
Jane Sullivan:
I don’t think I was a very good communicator, because my eldest sister, Dionne, she thought you have to do it forever. It’s not like I take medication, you take poop every day. I’m like, I don’t do this recreationally! Why would I continue doing it? When all my symptoms have gone? I’m just a terrible communicator. I didn’t make it clear: we only did 10. It took 10. She’s like, Oh, okay. All right. Well, maybe I’ll consider it. She thought it was like an everyday thing. In February 2019, I got my older sisters to do it.
The oldest, she’s a high functioning person with bipolar 2 disorder, in the sense that she worked full time, and she has two children that she took care of. She was functioning, but she didn’t have any joy. She experienced anhedonia, which is like nothing. It was just this bland. She was doing the things because she had to do the things to pay the bills and look after the kids, basically. So it was kind of like dragging herself through life, which isn’t fun.
And then my other sister Catherine was quite disabled by bipolar disorder; she was in her 40s and had to move home with my parents. And she rapidly cycled. I think her hormones are involved because around her period, she would become hypermanic. And that’s when she would live and she would plan and she would spend money and do all these things. And then within a week, she’d go down into this depression, and severe anxiety, like crippling anxiety, to the point where her executive function had been so affected by anxiety that she couldn’t put her thoughts together to even make a sandwich for lunch, like crippling anxiety, couldn’t leave the house. And that was her life, month after month. So that was really unbearable for her.
So February 2019, they decided to do FMT. We live seven hours from where my family lives. So luckily Alex does contract work, so there are times where he isn’t working. And we drove the seven hours, and I think we spent a weekend there. And they did three in a row, because we were like, alright, I didn’t want to go every two weeks. What if we do it more frequently? Maybe there’ll be faster results. I can’t remember how many they did. But we did one or two every time we would visit every couple of weeks. And then my sister Catherine actually came and stayed with us for a week and we did one every day. And I think that they improved more rapidly than I did. But it wasn’t like a magic, oh my god, I’m cured. It was still a process. It took months, and it was definitely just a lessening of their symptoms, and a noticing of, I’m not depressed anymore, or that thing that normally made me anxious doesn’t make me anxious anymore.
Like FMT absolutely resolved my sister’s anxiety and she started feeling and experiencing a broad spectrum of emotions and now they’re both doing really well. And I’m so grateful that we started FMT for them in 2019. Because by the time the pandemic hit, they were mentally quite well. And their stress tolerance was quite good as well. And this is a stressful time, even though we live in a country that has very little COVID. I hate to think about if they’d weren’t well, and having to deal with a pandemic. I really feel for people who have mental health issues, and then had to deal with the stress of the last year.
Lindsey:
And so for your sisters, I assume they use your husband as a donor, obviously, right?
Jane Sullivan:
Yes, they did.
Lindsey:
And did you do testing before he donated to them?
Jane Sullivan:
Yes.
Lindsey:
What kind of testing did you do?
Jane Sullivan:
The international guidelines for selecting donors – so blood and stool tests, basically, to make sure we didn’t have any nasty parasites or sexually transmitted diseases. We haven’t done like a Viome or Microba kind of analysis to see actually what general species are there. I don’t know what value that would be.
Lindsey:
Another main reason to do that would be if you could access the raw data. You know metagenomic sequencing would pull out any potentially pathogenic species.
Jane Sullivan:
Right. Well, interestingly enough, he wouldn’t be accepted as a donor in any clinic because of his age, but also, he does have blastocystis hominis.
Lindsey:
Oh, okay. So that’s an interesting one, because there’s a lot of controversy around that even in the functional medicine community. And there have been studies and in one, 85% of healthy adults had blasto in them of them and showed no signs of illness or problems. I think it’s coming to not to be considered a parasite.
Jane Sullivan:
That’s when we did our own research. I was like, huh, it’s pretty inconclusive whether it is pathogenic. Well, maybe. I haven’t read the data. But I’ve heard that there’s potentially like seven subspecies, and that maybe one or two actual species is pathogenic or has definitively been linked to GI issues. But what was interesting was that I didn’t have gut issues. Both my sisters had IBS. And then later on, my mother started FMT, with Alex’s a donor, because my mom has had gut issues for a long time.
Lindsey:
Wow. And so have those resolved as well?
Jane Sullivan:
Partly, but we think she needs more. Okay, but were your sisters’ gut issues with the first things to be resolved? Well, that was the gut issues, or IBS issues resolved, and then the, you know, mental health issues over time.
Lindsey:
Okay, but for your sisters?
Jane Sullivan:
Their gut issues were the first things to be resolved. Well, it was the gut issues, and then the IBS issues resolved, and then the mental health issues over time.
Lindsey:
And were they more in the IBS-C or IBS-D spectrum or mixed?
Jane Sullivan:
I haven’t discussed in depth their IBS issues.
Lindsey:
And how many total transplants did your sisters end up doing? Over what period of time?
Jane Sullivan:
10 or 11?
Lindsey:
Each?
Jane Sullivan:
Yeah. Over . . . I don’t remember Lindsey. They want to do more.
Lindsey:
So months to years?
Jane Sullivan:
A year. I don’t think we’ve done anything this year. It was just enema that we did. And at the time, I was really scared about top-down pills. But interestingly enough, when I had the post viral fatigue issues, I was like, well, maybe we can fix this, because obviously, the viruses had changed my microbiome, you know, so doing enema again actually made the fatigue worse. But then I learned how to make enteric coated, double encapsulated pills. So I thought, maybe it’s a different and maybe the poo goes through the whole digestive tract, it’ll colonize other areas. So I did top down method, and it definitely helped. I felt a difference. And so now my sisters want to do pills as well. And I think my mom as well. I mean, I think, psychologically it’s a bit more palatable to just swallow pills that look like supplements then an enema.
Lindsey:
Yeah, not for me. I assume you double encapsulate them to make them clean? You pretty much just do the one that may be messy, but then you put it inside another one?
Jane Sullivan:
Well, I’ve done it so it’s not messy at all.
Lindsey:
Oh, really? How do you do that?
Jane Sullivan:
Well, I found a video online of this guy in a lab going this is how you can make pills at home. So I bought size 00 enteric coated capsules because that’s the biggest size you can get in Australia and so enteric coated capsules survive the stomach acid because I figured you don’t want it to break down in the stomach. And I looked at medical trials without using capsules, they usually do an enteric coated and then a double layered kind of thing. So I got the poo. And instead of mixing it with saline, I mixed it with food grade glycerin, because saline actually breaks down the capsules very quickly. And I was like, okay, well I’ll make some and take them fresh but also freeze them and glycerin has a bit of a cryoprotective element to it. Apparently, it’s not the best cryoprotective thing to mix it with; apparently maltodextrin is. I had fleet enema bottles, and they’re actually perfect little squeezy bottles that I could squeeze the FMT slurry into the pills and I had a size 00 or a pill machine and filled it up, squeezed a bit of the poo into it, put it together, and then you’ve got 25 capsules in the enteric coated capsules. And it’s like well, you can kind of see the poo in it. So let’s double coat it. So I did triple zero veggie caps that were green. And then that just looks like a green supplement and I consumed them fresh and then froze them and I found that the frozen ones probably didn’t have as big as a kick as the fresh ones. But they seem to work. So yeah, that’s how I made pills.
Lindsey:
And so this machine, is this an expensive thing to get, what does it look like?
Jane Sullivan:
It’s an encapsulating machine and cost me like $30. It’s just a little machine that you put the capsules in, press it together. It’s not very expensive.
Lindsey:
Yeah, no, that sounds very doable, especially for people who are pretty hesitant to do an actual fecal transplant rectally.
Jane Sullivan:
Well, I mean, you still have to handle poo.
Lindsey:
I don’t know that that’s the part that grosses people out. Although I’m less easily grossed out than a lot of people.
Jane Sullivan:
I’m not grossed out anymore. Obviously, by this discussion. I even went on national television in Australia and put poo in a blender on national television.
Lindsey:
Okay. And you wrote that there are 12 people now that that have experimented with FMT for bipolar disorder with success. Can you tell me a little bit more about who those people are?
Jane Sullivan:
Well, there’s actually more than that now. There are currently six people who have been in remission for a while. So there’s me and my two older sisters, And then there is a guy in Peru called Kerwin who has bipolar 2 disorder. He found my story a few years ago and experimented with FMT, with his wife as a donor. And he’s basically been in remission for a few years, although FMT didn’t resolve his anxiety, so he’s adopted a low carb kind of ketogenic style diet, which keeps his anxiety under control. But his wife wasn’t the healthiest of donors.
Lindsey:
And of course, there can always be other underlying issues, at a genetic level that are causing, for example, low serotonin.
Jane Sullivan:
It’s very complicated. It’s an ecosystem. My story was very linear. I did the poo and then within a few months, all my depression went away. And that hasn’t been the case for everybody who has tried FMT. Some people that has been, but other people, my friend who lives in the United States, she has a very different kind of bipolar that I’d never heard of until I started communicating with her. It’s called mixed bipolar, which is an incredibly dangerous kind of bipolar, because people who have mixed bipolar can be exceptionally depressed but manic at the same time. So it’s like you’re suicidal and actually have the energy to follow through with it. So she started FMT three months ago, and she’s done a lot of FMT and it has not been a linear process. She’s definitely improved dramatically, but it was like up, down, up, down, up, down, and the ups and downs got less up and less down kind of thing. It was just this dramatic depressive manic cycle and then it got less and less so. So it’s kind of like evening out over time, but it was not a linear process for her. With my sisters it was pretty linear, with Kerwin it seemed pretty linear.
And the most kind of incredible story recently was this guy Steve in Australia. People want Alex’s poo. People contact us, like can you be a donor? It’s not logistically possible because of where we live and etc. So this young guy, Steve has bipolar 1 disorder and had a severe manic episode, mid-2020. And then after the manic episode became exceptionally depressed and suicidal and it was in the middle of this depression and his girlfriend found my story and contacted us and wanted Alex to be a donor and we were like, we’re really sorry, he can’t be a donor. But we left them with some resources about if you’re serious about this, these are these clinics, or if you want to find your own donor, make sure you do it safely. This is the way to make sure your donor is safe. And just because it worked for me doesn’t mean it’s going to work for you. We don’t know. It’s all anecdotal, etc., and left at that. And then a few months later, we got an email from them, saying that his girlfriend had been tested and she was a safe donor. And they did FMT and he came out of his depression within 30 minutes from one FMT. Like severe depression to not being depressed anymore in 30 minutes, and that is unprecedented.
Lindsey:
And he didn’t do a second one?
Jane Sullivan:
He’s done more. Wow, that was incredible.
Lindsey:
That is incredible. So your story has been printed in a journal, is that right?
Jane Sullivan:
So my psychiatrist, he was rejected so many times, he was very frustrated, but he eventually got published in a respected journal called the Australian and New Zealand Journal of Psychiatry, but they only let him write 400 words about my story. But I see it as a victory because it’s now a drop in the ocean of the research. And I’m so humbled, I was actually asked by Professor Felice Jacka from Deakin University, who’s a world pioneer in nutritional psychiatry to be an associate investigator for an upcoming clinical trial, which hopefully they’ll get funding for in the next few months, to treat major depressive disorder with FMT. And so they used my case study in their ethics application. So it’s like my story is helping science.
Lindsey:
I see they’re applying for grants, but if they want donations, is there a place that people could donate to help on that research?
Jane Sullivan:
Oh, for sure, you could go to Food and Mood Centre at Deakin University. If you look that up, you’ll be able to find them. I would love that.
Lindsey:
Okay, great. Anything else that I haven’t asked about that you would like to share about your experience?
Jane Sullivan:
I think I’d like to say that FMT didn’t kill everything. I’m kind of worried that I’ve painted a false narrative of like, I took poo and all my suffering went away, and all my problems are resolved. The life-threatening problems were resolved. I mean, the bipolar dramatically reduced my capacity to live, you know? So FMT resolved my bipolar symptoms, which gave me quality of life, which made it possible for me to live and be functional, and at the age of 37, learn how to be an adult. But what it didn’t do is it didn’t resolve my trauma. So, interestingly enough, FMT resolved my sister’s anxiety, but it didn’t resolve my trauma. I had PTSD and complex PTSD, that still kind of limited my ability to really function in the world. But what FMT did do for me is it resolved my depression and mania, and gave me space to now finally work on healing that trauma, which I have been doing for the last three years, because, you know, sexual abuse changes you, that changes your perception of the world and yourself. And so I had a lot of anxiety that was still debilitating. So I think I just wanted to mention that because it’s like, you know, FMT isn’t going to resolve your trauma.
Lindsey:
And one more question. Do you know anybody who you’ve talked to with bipolar who maybe didn’t have gut issues, but instead of going the FMT route just went the route of trying to heal their gut in another way?
Jane Sullivan:
I followed for a while a woman in the United States who seems to keep her symptoms under control with a ketogenic style diet. I don’t know if the mechanism there is to do with inflammation or not, but a ketogenic style diet kind of concerns me a little bit in the long term if there isn’t enough fiber, just because we know how important fiber is.
Lindsey:
Oh, yeah, no, you should look at Lucy Mailing’s work on this question. She’s a PhD who’s studied the gut microbiome and exercise for her doctorate, but she just put out an article talking about the flexibility of the gut microbiome and in particular, when you’re on a ketogenic diet, how there is butyrate produced as a ketone body, and that that will feed the gut epithelial cells the same way that butyrate produced by bacterial fermentation of fiber will.
Jane Sullivan:
That’s really heartening to hear then.
Lindsey:
Yeah, so that’s why that would probably work.
Jane Sullivan:
I know that I’ve heard many stories, anecdotal case studies that people that I’ve actually talked to who control their bipolar symptoms through a ketogenic style diet. However, you know, the underlying issue isn’t resolved.
Lindsey:
Yeah. And I think that that’s the fundamental problem and that few people are able to sustain a ketogenic diet indefinitely. Because let’s face it, carbs are delicious. And nobody wants to live like that when everyone else is eating carbs all around them.
Jane Sullivan:
Well, having a serious mental illness is a pretty big motivation.
Lindsey:
No, I understand deprivation. I have for autoimmune disease gone for many years very strictly without gluten and dairy. But fortunately, I’ve been able to reverse my conditions through healing my gut.
Jane Sullivan:
I think one thing I wanted to add, Lindsey, is that there has been a clinical trial already in Toronto, Canada, treating bipolar disorder with fecal transplant. And that data hopefully will be published this year. So I’m exceptionally excited about this trial. Because, at the moment, people are desperate, people are doing FMT at home, which you can limit the risks by ensuring that your donor is properly screened, etc. But really, this is not going to become mainstream. It’s not going to become available to people until we have the data from randomized, controlled, double blind trials. And this is the first trial. And yeah, I’m very excited about the data being published for that. So awesome. That’s really exciting.
Lindsey:
Thank you so much for coming on and sharing your story with us.
Jane Sullivan:
Thank you, Lindsey.
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