Adapted from episode 92 of The Perfect Stool podcast with Nita Jain and edited for readability.
Lindsey:
Why don’t we start with how and when your health started going downhill?
Nita Jain:
Yeah, so I struggled with health issues for a good portion of my life. I started developing things like Ehlers-Danlos type symptoms, which is a connective tissue disorder, that means that the vasculature ends up being a little bit weak because of insufficient collagen production. And so this is something that I started dealing with at a pretty young age in grade school. And then I also started developing symptoms of acid reflux disease, or GERD, and that was in high school and college. And I had also started dealing with something called chronic fatigue syndrome, which is now renamed myalgic encephalomyelitis after having swine flu as a teenager in high school as well. But apart from those things, I was managing and I wasn’t in the best of health, but I was getting by, but then everything changed for me after a course of fluoroquinolone antibiotics in 2015. This was during my last semester at university. I had to drop out because I developed seizures as well as peripheral neuropathy, fainting spells and all of these really disabling neurological symptoms. That meant that I didn’t have much bodily autonomy anymore. I didn’t have a lot of motor control. I was wheelchair bound or stuck in bed, and I just didn’t have any autonomy. I couldn’t drive a car anymore. I couldn’t cook for myself. It was hard to be upright. Around this time, the dysautonomia started to get really bad again. It was in remission for a while after the swine flu initial months, but then all of these old problems resurfaced, but they were much more severe than before.
Lindsey:
Can you explain the dysautonomia a little bit?
Nita Jain:
Absolutely. So dysautonomia is an umbrella term for a number of different conditions, like POTS is a subset of dysautonomia, postural Postural Orthostatic Tachycardia Syndrome. But basically, dysautonomia refers to conditions that result in vital instability. So you might deal with high or low blood pressure, a slow heartbeat like bradycardia, fast heartbeat like tachycardia, there’s often just an issue maintaining stable vital signs, and it seems that the sympathetic nervous system is not able to regulate the way it normally would be. And that can lead to a lot of secondary effects as well. It’s not just things like the vital signs being affected, but then you would often, of course, have secondary fatigue, you might have cardiac issues as a result; it can just lead to a cascade of downstream effects. But dysautonomia, depending on the subset, the root causes can be different. And for some patients like myself, the first line therapies are things like increasing salt intake. That’s usually something that doctors will say is like a first go to address this issue, but if that doesn’t work, they might move to medications like alpha blockers, for instance; it just depends on the patient.
Lindsey:
And what what were your symptoms?
Nita Jain:
For me it was that vital instability, as well as just crushing fatigue. I feel like I should differentiate between like being tired and being fatigued. Because being tired is something that you can recover from, I think it’s like what normal people feel at the end of a long workday, but you go to bed, you rest up, you’re better in the morning. Fatigue is a whole other level of tired. It’s the tired where your body does not have the energy to carry out the functions that it needs to. And it’s much more severe than simply like, oh, you’re just tired all the time. Because I think sometimes when chronically ill people try to talk about chronic fatigue. It sounds like it’s this very mild condition, when it’s much more severe than what it might seem at the surface.
Lindsey:
Right. There was a documentary on chronic fatigue that someone sent me to watch. And some people are in bed, basically, all day long. They can drag themselves out of bed to do just only the very basics.
Nita Jain:
Absolutely. Yeah, I think I know that documentary you’re referring to. I think it was called The Forgotten Plague with Ryan Pryor. And he actually recently released a book called The Long Haul, which is about long COVID. And there’s a lot of parallels between chronic fatigue syndrome and long COVID. And a lot of these other post-viral syndromes, like in the aftermath of the SARS and MERS epidemics, we also saw a lot of post-viral fatigue syndrome. So I think there are a lot of related conditions out there that produce these widespread constellations of symptoms. And I think energy metabolism is probably an underlying cause of many of them. So I think any insight that we can get into one of these conditions, it’ll probably also help elucidate the causes of the others.
Lindsey:
Yeah. Did you have a somewhat of a medical background?
Nita Jain:
Yes. So in in college as an undergrad, I was a pre-medical student and I had applied to medical school and everything, but then just having had that disabling adverse drug reaction during my last semester, I wasn’t able to go to medical school and I was just in a vegetative state for about six years or so. But medical school was what I was aiming for at the time. So I studied biochemistry, I worked in a cancer laboratory as an undergraduate research assistant. And that’s a little bit of my life sciences background.
Lindsey:
Ah, okay. So back to back to your health story. . .
Nita Jain:
Right. Yes. So in the aftermath of all those symptoms that I was experiencing post Cipro, which is the antibiotic class I was given, this is the same class of antibiotics as Levaquin and Avelox, in case people have heard those words as well. But what had happened was, I was under the impression that maybe because these antibiotics are so broad spectrum, maybe the fact that my gut microbiome has been wiped out, maybe that’s why I’m having all these really systemic side effects. And that’s what got me on the path towards pursuing FMT. And in the United States, FMT use is restricted to recurrent C. difficile colitis, that hasn’t responded to at least two courses of antibiotic treatment. So if I wanted to receive FMT, the only routes were through a clinical trial with like an IND license that the researcher would have to apply for, or through a private clinic. And I had applied to some of the clinical trials, but I wasn’t accepted into any of them. So then I started pursuing private clinics. And, of course, safety was something that was of top concern. So I wanted to make sure that the donors were thoroughly vetted, in terms of doing the necessary blood and stool testing, just to make sure that everything’s safe, and the chances of an adverse reaction are low. And so I did end up going to a satellite clinic, traveling abroad to receive this procedure.
Lindsey:
Which one was that?
Nita Jain:
So I went to a clinic that was the satellite branch of Taymount. So their main branch was in the UK, but they had a satellite branch in the Bahamas. So I was living in Georgia, it was just a couple hours flight to the Bahamas. And I received several different donors while I was there, but I noticed that I only responded positively to one of them. And so when I got back home, they had sent me home with some samples as well. And I had noticed that I that there were certain patterns as to the donor that I would respond positively to like, that particular donor was enriched in butyratep-roducing bacteria. They had a lot of the Clostridial clusters 14 and 16, which, again, a lot of butyrate producers. They were more enriched in things like the Faecalibacteria, Akkermansia, Blautia, Roseburia. And these are just some of the bacteria that are associated with robust metabolic health, good GI health, things like that. And I noticed that the donors that I didn’t respond to were not as enriched in these particular organisms. So unfortunately, I did have a reaction to one of the donors and I was in the hospital when I was back in the United States.
Lindsey:
What was that reaction?
Nita Jain:
So basically, after one of the donors that I received, I had really pronounced neurological symptoms. And it was just like my brain was on fire constantly. Now, I had a little bit of this before because of the peripheral neuropathy. But it was just jacked up to 100. And it was so severe that I wouldn’t sleep at all. And it turned out that I had something called Hyperammonemia, which is when your blood levels of ammonia are very high. And that was causing all sorts of different symptoms. It felt like I was being electrocuted, like my brain was just burning. I was severely depressed. And basically, I started taking l-ornithine orally in order to counteract this because it helps with the urea cycle and the elimination of of ammonia through the urine. But it was a really scary time because no one could really tell me what was going on. And it’s just like hell in your brain. And after that, I was a little bit more weary of FMT, I mean, I still thought that it had a lot of therapeutic potential, but I felt like I really need to avoid this ammonia problem happening again. And I continued to sequence of donors privately that I received from any clinic.
Lindsey:
Okay, let me stop you for a sec. I want to back up a little bit because you didn’t discuss your inflammatory bowel disease at all. When did that come up?
Nita Jain:
That came up about a year later. But that was all.
Lindsey:
Okay, so this is after taking your first FMT?
Nita Jain:
Yes. So at this, at this point, I do have pretty bad GI issues, but I’m not dealing with GI bleeding the way I did when I had IBD.
Lindsey:
So what GI issues were you having prior to FMT?
Nita Jain:
Just a lot of diarrhea; it was pretty frequent. And that was pretty consistent, but then I would have periods of time where I would go maybe 14 days without a bowel movement, which was very unhealthy as well. So it was kind of alternating, but I think it was mostly diarrhea predominant at that point in time. Then I also ended up getting FMT from other institutes in Europe. I had it shipped over on dry ice and had to go through customs and everything. Unfortunately, it was after that sample that I developed IBD, I started having GI bleeds. And it’s really hard to know why these things happen just because, well, actually, when I had sequenced that particular donor, they had a pretty high proportion of Clostridioides difficile, which was really surprising because it came from a research institute that’s really reputable. So I don’t know, I think maybe after the C diff, maybe that triggered IBD. In a way, just having carried it, I’m not particularly sure because even after C difficile got down to normal levels, I would still have these flares where I would bleed. And the only thing that would fix it is FMT from a healthy donor, like one I responded positively to, because, again, there’s so much variability. So it feels like to me, at least, when we’re sequencing these donors, or testing donors to figure out who is a viable candidate to donate material, I think that the current qualifications that we’re using are not really sufficient. Just just because even if you’re ruling out things like C difficile, things like Salmonella, Shigella, Campylobacter, some of the more common GI pathogens, and even if the bloodwork is clean, that doesn’t necessarily mean that the person has the protective bacteria to give to somebody who’s sick. So I feel like testing for that is equally important, not just the absence of pathogens, but also the presence of protective bacteria. And so yeah, I think that might make the process a little bit safer for people who are seeking out this therapy. And I mean, I think it’s kind of unfortunate, because I do think that it has a lot of potential as a therapy. But I just think that it’s not practiced the way it needs to be to be safe for the maximum number of patients.
Lindsey:
Yeah, so again, backing up, how did you have time to sequence these microbiomes before taking the samples? Did you just like get a frozen sample, run the sequencing, and then hold onto it until you were ready to take it?
Nita Jain:
Yeah, basically, after I started reacting negatively to some of the Taymount donors, that’s when I started deciding that, yeah, I’m going to sequence them before taking the sample, just in case there’s anything alarming in them. And at the time, Ubiome was still was still running (since, they had to declare bankruptcy because of some billing issues with one of their Smart Gut tests). But at the time, I was just getting everything sequenced through 16S ribosomal RNA sequencing just to have some idea as to what’s in the sample. So I’m not like totally shooting in the dark. But after that, after those initial adverse reactions, I decided that I should probably sequence them before taking them and wait for those results to come back.
Lindsey:
I see. Okay. And when you saw a donor that had high levels of C. difficile, why would you go forward with that sample?
Nita Jain:
Yeah, absolutely. I was not aware of that at the time. And at the at the time, my condition was pretty severe. So I felt like okay, let me go ahead and take the sample while I’m waiting for the results to come back. Definitely being in a vegetative state will make you pretty desperate. So you know, I know in hindsight, it’s not intelligent to do that at all. But I also empathize with people who are open to experimenting with potentially dangerous things because of the desperation, because your quality of life is so bad, it is just like, well, I can’t get that much worse might as well try it. And of course, this is not something that should be done at all. But I think that’s just the psyche of people who are very chronically ill.
Lindsey:
Of course. Yeah. So when you said you responded well, to certain donors, when you did respond, well, what kind of positive changes did you see?
Nita Jain:
So I saw a lot of systemic benefits when I responded, Well, it was like the brain fog would be lifted. The GI stuff would calm down, I could breathe easier in a lot of ways. It was just like things were just lighter. I felt more like a regular person would. I started having more mobility, more autonomy, more motor control, just able to do regular things, again, able to engage in chores and cooking and slowly but surely pick up driving again. But it’s also very strange acclimating, like re-acclimating to civilian life, after just having been in hospitals for six years, because you don’t see anyone or at least I didn’t, in my condition. I didn’t see anyone outside of the hospital and my immediate family for that stretch of time. And so this was before the pandemic even started. So I was just already accustomed to this degree of social isolation before COVID even came around. And it’s really difficult to re-acclimate. And it wasn’t as though I wasn’t still having symptoms. Because the thing is, it wasn’t just FMT that made me better because even when I received FMT from a from a donor that I responded well to, I would relapse. And I noticed that the one thing that made it stick for me in the long term was to also adopt an autoimmune protocol diet, and FMT, in conjunction. So if I did those at the same time, then I was more likely to see that long-term remission.
Lindsey:
This is like an autoimmune paleo?
Nita Jain:
Yes, exactly. And the other thing that helped me was time-restricted feeding and not eating after dark, especially just because of the hyperpermeability that can happen if we eat after dark. Yeah, one of the mechanisms by which that happens is the fact that melatonin blunts insulin secretion a little bit. So glucose transport, after sundown, is more likely to lead to leaky gut symptoms, because of, you know, the LG the way that it’s transported after dark. So basically, for me, it was the combination of FMT, an anti-inflammatory autoimmune protocol diet, and then using this time-restricted feeding to really drive down inflammation; those three in conjunction really started moving the needle for me.
Lindsey:
Okay. And so then I understand you’ve gotten FTM samples from other places as well?
Nita Jain:
Yes, I also received samples from a local clinic called RDS infusions. That was in Florida, I believe, at the time, I think when I pursued it in 2017 or so they had three donors. I’m not sure what the case is now. But then I also received FMT from a place called Microbiomes LLC in Portland, Oregon, I believe.
Lindsey:
And were these just individuals selling their stool? Because my impression was RDS was sort of like that. But I guess you said they had other donors too?
Nita Jain:
RDS was run by a gastroenterologist at the time, but I do believe that one of their donors ended up selling his samples of his own accord, but I had received it from the gastroenterologist when he was a donor at that clinic. And for Microbiomes LLC, I had gone through Purety Clinic in California for that. And the samples came from Microbiomes LLC in Oregon, and they shipped it on dry ice as well. But those are all the different places that I pursued. And I even, at one point, tried to sequence my cousin’s sister, to see if she was a viable candidate, but, I’ve received lots and lots of donors. And yeah, there have been definite patterns as to who I will respond better to, but I think the more stringent we can make the screening process, the better, as far as safety and efficacy goes.
Lindsey:
Yeah, I understand that you you reached out to a lot of people that you knew to try and find donors. Can you tell me a little bit about that process?
Nita Jain:
Yeah, that’s true. So after I responded negatively to FMT, I was really desperate to get a sample to counteract those effects, and was just like, I just need to get a better donor, and then I can reset, it’ll be fine. And so I reached out to maybe 500 people or so among my contacts, family, friends, school colleagues, former classmates, anyone who I’d come into contact with who might be able to help me saying like, “Hey, would you mind filling out this donor questionnaire? Because I’m really sick and having a healthy stool sample from somebody could really help.” But it’s a very bizarre question to ask because I think there is more disgust around the idea of stool versus being a blood donor or something like that. I think people are a little frightened by it, to some extent. I think a lot of people think that you’re maybe just like mentally sick or something to be asking this. Because if you don’t have knowledge about the microbiome, it might seem like a very odd request. It’s like, oh, she’s just like gone off the deep end or something like that. But I did reach out to a lot of people. And so unfortunately, almost everyone I knew had some sort of, even among people who were willing to do it, most everyone had some sort of pre existing condition that would disqualify them, or they were on some sort of prescription medication that wouldn’t make it perfectly safe. So it is very much a needle in a haystack endeavor in a lot of ways. So I think there is a way to make an artificial substitute that would go a long ways towards helping patients as well.
Lindsey:
Yeah, I actually am taking one of the, well, there’s a few products that have anaerobic bacteria now from Pendulum*: Glucose Control, and their Akkermansia, and now GI Repair, which is Clodridim butyricum (since renamed “Butyricum”) (also available in my Fullscript Dispensary*), which I started taking, and I’m actually really impressed with the results.
Nita Jain:
Yeah, definitely. Because it is so hard to culture so many of these anaerobes, since they’re dying in the presence of oxygen, essentially. But yeah, I think that was one of the reasons that having that Akkermansia probiotic over the counter was such a big milestone, because it just shows us that it is possible to culture anaerobes and administer them in an oral form, which I think is huge.
Lindsey:
Have you tried any of those?
Nita Jain:
Yeah, yeah, I’ve tried pretty much everything that’s on the market. In addition to the two that you mentioned, I’ve also tried some of the bacillus types of soil-based. . .
Lindsey:
Spore-based. . .
Nita Jain:
Yeah, exactly. The spore-forming soil based organisms, a lot of those as well. Yeah, those are really good at colonizing in the long term I’ve seen because you take it once, and you can still see it in stool samples months later down the line. And I think nowadays, they’re even there. They’re also doing Bifidobacterium infantis for children or newborns who are lacking that bacteria, because a lot of moms don’t carry it. So you can’t pass it on to your children. But that also seems to colonize pretty well, surprisingly.
Lindsey:
Yeah, that’s the one I give to all my pregnant friends.
Nita Jain:
Awesome. Very cool.
Lindsey:
Yeah. So did any of those probiotics have a positive impact on you?
Nita Jain:
They didn’t move the needle for me specifically. But I do think that if people maybe have a very specific condition, it has the potential to help. I think, just for me, my condition was just to the point where so many of the species were just extinct, and they just needed to be replaced, that I wasn’t seeing much benefit from just introducing a few microorganisms here or there. I think I just needed a more comprehensive restoration protocol. But I do think that they can help in some instances, yeah, sure.
Lindsey:
How long was your course of antibiotics?
Nita Jain:
It was only a week. And it was just basically twice a day, I think it was maybe 800 milligrams twice a day for a week. And unfortunately for me, I didn’t actually have a bacterial infection. So it was all collateral damage. They had given it to me just in case of infection. And the reason it happened was because at the time, when I was in college, I dealt with recurrent iron deficiency anemia. And after receiving one of the iron infusions, which is through an intraveous line, I developed a really high 106 degree fever. And so I called my hematologist, they were just like, I don’t think it’s related. Just follow up with your PCP about it. So then I went to see primary care and primary care was like, okay, we’ll give you these antibiotics, just in case there’s an infection going on. So I took the antibiotics, when my test results came back, turned out no infection, but they were just like, just finish the course of antibiotics. And I was like, okay, I’ll do that. But, yeah, I think I think we maybe need to be more judicious about our antibiotic usage. Because if there isn’t a clear sign of infection, it really does have the potential to do more harm than good. And I think that’s something that really needs to be evaluated carefully on a case by case basis with the clinician, with the patient, like, what are the risk factors and are there any safer alternatives, especially when it comes to the fluoroquinolones class of antibiotics. Because it is a class of antibiotics that has so many black box labels for really disabling side effects like aortic aneurysm, tendon rupture, it even has a blackbox warning for psychosis, suicidal ideation and even completed suicide. And they added that warning in 2016, which is after I was prescribed them a year earlier. And you know, even Nature, the world’s premier scientific journal, had done a feature on Fluoroquinolone antibiotics and their disabling side effects in 2016. But I think the prevailing consensus in the medical community hasn’t changed much, they still very much say things like we prescribe like water, we prescribe it like candy. It’s perfectly safe. And there are thousands of patients whose lives have been forever altered by this class of antibiotics.
Lindsey:
So yeah, I think that one year, I had two 10-day courses of Cipro for urinary tract infections, and three days is actually the standard of care. I don’t know why the doctor prescribed it for so long for me.
Nita Jain:
Yes, yeah. Especially especially when it comes to like uncomplicated urinary tract infection, uncomplicated bronchitis, I think we can safely go with safer options.
Lindsey:
Yeah, well, I’m allergic to sulfa. So I think the first time Bactrim maybe is the one they usually give, but I was allergic to that. So that may be why they went to Cipro for me. Yeah. So backing up again, what made you think of FMT as a possible treatment? Like where had you even heard of it?
Nita Jain:
So I had a tangential awareness of FMT, just being a biochemistry student, I think in 2012, that’s when it first got on my radar. And when I first heard the term, I was like, What is this? It sounded very weird, fecal transplant. Like, what does this mean? So I started reading up about it, how it helped people with C. difficile infection. But it’s weird. Even though I had GI issues at the time, I didn’t make the connection that maybe this is something that I could pursue, because at the time, most of the literature around it was just in relation to C. diff. So I thought, okay, that’s just something that helps that isolated case. But then I did start following the microbiome research. And in 2013-2014, I was seeing more and more evidence about things like the hygiene hypothesis; how being too clean can maybe negatively impact our health, because we’re losing these old friends that help train our immune system and help us develop immune tolerance, help us differentiate between self and non self. And so I think as the years went on, I was getting progressively more convinced that this is really important. And I myself was a C section, baby. So I was also thinking that, well, maybe some of the things that I’m experiencing are due to the fact that I wasn’t a vaginal birth and didn’t obtain my mom’s microbes by passing through the vaginal canal. Maybe that was something and also the fact that I didn’t breastfeed for very long at all, just a few months. And that’s also something that helps to facilitate good gut health because mom’s breast milk contains HMOs, which are human milk oligosaccharides, these small sugars that feed the bifidobacteria in the infant gut, and that really helps to train the immune system. So I was thinking that maybe this combination of things like antibiotic exposure, the C, Section delivery and lack of breastfeeding was maybe contributing to my health issues, even before the Cipro fiasco happened a little bit later. When I did receive Cipro, I had read in the New York Times about this system restore, and it was about FMT. But they basically talked about FMT as system restore and like, we all know that if your computer gets a virus or a bug, you can essentially use System Restore to return to a previous point in time, and that can counteract any sort of malware that you’re experiencing on your machine. And FMT was likened to that. It was basically saying, like, we bank our stool when we’re healthy. So that if we ever get sick, we can administer that sample to ourselves – autologous FMT – use our own sample. And that will be like restoring our health to that time point. And having read that, I was just like, I think this is going to be the solution. For me, this is the thing for me to pursue, because I was just getting shuffled from specialist to specialist with no real resolution, I was very convinced that the gut microbiome was going to be the thing to get me back on track. And I was kind of upset that I hadn’t saved my stool beforehand. Like before the antibiotics I was just like, if only I had considered this earlier, then I could have just done autologous FMT with my own sample when I was healthier, because it’s so hard to find a good donor, a donor that you respond to, it is very much a needle in a haystack endeavor for a lot of patients. So I think, yeah, that’s another thing that might be beneficial, to have stool banking options for patients if they are going to need to take antibiotics. But again, it’s also a question of education. A lot of us don’t know about this until we get ill. And then it’s too late.
Lindsey:
Right, you need the stool put away before you have the thing that requires the antibiotics.
Nita Jain:
Exactly.
Lindsey:
Yeah. That’s the dilemma. And so what period of time did you go from being totally bed bound to being up and around and again, again, maybe not in perfect health, but just, you know, functional?
Nita Jain:
Yeah, so 2019 was the first year that I started seeing a little bit of that return to health after finally finding a donor that I did respond well to. It wasn’t perfect, but it was good enough to get me back 70% of my functions. I still had chronic cystitis pain. And this is something that I developed after hospitalization after a Taymount sample. So that’s something that I have still been dealing with since 2015. But basically everything else has gone into remission as a result of the strides that I’ve taken.
Can you explain what the cystitis is?
Yeah, absolutely. So basically, chronic cystitis, there is a lot of overlap with chronic UTIs. And I think the unfortunate thing is, most of the time, doctors only consider a UTI as being either acute or recurrent. There is not a lot of medical education around chronic UTI yet, but a lot of patients do experience that and I am one of them. Basically, when you do urine culture, it’s really biased for E coli detection. And that’s pretty typical because the vast majority of UTIs in females are caused by E. Coli. But there are also a lot of other organisms that can do it, like Klebsiella pseudomonas, Enterococcus at times can cause UTIs. And the thing is, because the culture process is biased to E. coli, sometimes even if a patient does have an infection, the culture can still come back negative. And you might need something like urine PCR to find those microorganisms. And urine itself, the bladder itself does have a microbiome. It’s not as though urine is completely sterile. But you do want to beware if there’s zero pathogens there. So unfortunately, urine PCR is not widely adopted right now. So sometimes you kind of have to find a urologist or somebody who’s willing to do that more in-depth testing. But for me, it seems that sometimes when UTIs have been going on for long enough, there might be something called biofilm formation, where it’s just these, these communities of microorganisms that form this extracellular matrix that protects them from antibiotics. So one of the problems is that bacteria that are forming a biofilm, it’s very hard for antibiotics to penetrate that a lot of the time. So sometimes, you might have to be on antibiotics long term or sometimes patients have to receive intravesicle antibiotics. So antibiotics directly into the bladder, because the oral stuff, it’s just not concentrated enough by the time it reaches the bladder to have enough of an effect to break up the biofilm and clear the infection. But yeah, this is just something that there’s just not a lot of good information on right now. And I think patients who are dealing with it, they’re kind of left to fend for themselves finding a specialist or finding a doctor who is well versed in the condition and the possible treatment methods. And that’s still a journey that I’m on to fix that condition. But at least for me, the dysautonomia, the IBD, the neuropathy, all the neurological stuff improved incredibly to the point where I don’t really deal with that on a day to day basis anymore. Thanks to FMT and the anti inflammatory diet and time restricted feeding.
Lindsey:
And what about your psoriasis?
Nita Jain:
Yeah, so I developed some eczema and psoriasis in the aftermath of Cipro as well. And the gut-skin axis is something that’s being more widely elucidated now, and there’s even something called topical skin microbiota transplants that some researchers are using to see if it can help with things like psoriasis and eczema, or atopic dermatitis, as it’s sometimes called. But yeah, for me, now, the skin conditions, they get bad in the winter months, but otherwise, the rest of the year, I’m in remission. But sometimes I will still have that dryness, that peeling, and just that tearing of the skin, the epidermis layer in the winter months, but the rest of the year, it’s in remission. So that is something that still crops up around that time of year. But otherwise, that’s been okay as well.
Lindsey:
I know there were some products on the market a couple of years ago, I’m not sure if they still are that were like lotions and soaps that had microbes in them. Have you tried any of those?
Nita Jain:
I have tried a few of them. Yeah, I think I tried things like Mother Dirt and AObiome. And then I think, there are some, some skin products that use terpenes, and other sorts of other sorts of compounds that are supposed to help fortify the skin barrier. And I’ve definitely tried and experimented with a lot. I haven’t found a way to prevent the recurrence in the winter yet. But there are things that have helped me, like I started using Weleda Skin Food; that helps me a little bit. And then I think a lot of it’s also just internal nourishment, like keeping my omega intake high and just making sure that my vitamin D intake stays high. There’s a lot of inverse correlations between skin, autoimmune conditions and your vitamin D levels. So those do make somewhat of a difference in terms of severity. But it does crop up a little bit in the winter nonetheless.
Lindsey:
And tell me about the Frontiers article you wrote?
Nita Jain:
Sure. So in 2019, that was the first year that I was doing better. In December of that year, I was part of a research organization, it was called Open Humans. And basically this is a community of researchers as well as citizen scientists who get together and share and have n of 1 experimentation results. And the benefit of n of 1 is that while you don’t have the rigor and the generalizability of a randomized controlled trial, you do get to illustrate that certain variation exists in the human population. So it’s beneficial from that regard, just to show that this variation is possible to observe, just because all of us are a little bit unique. But long story short, one of the people who was part of the organization, Eric Daza, was creating this special issue in Frontiers that was about patient-led research and using data and so he asked if I wanted to submit I said, “Okay.” And so I wrote this short mini review on personalized approaches to microbiome research. And it was all about how the more precise we are with our approach, and really like tapping into precision medicine, personalized medicine, the better off microbiome science will be. And I had submitted the manuscript in January of 2020. And I got feedback from a couple of couple of reviewers in the fields. And I just went through that peer review process, they had just minimal notes for me. I made some small edits, sent it back. And it was published in April of 2020. And it’s ironic by the time that happened, I had already contracted COVID. And then the whole of 2020, I was unfortunately dealing with hospitalizations because of lung scarring, trouble breathing, really severe tachycardia that felt like heart attacks whenever it happened. And then I also developed a kidney infection after hospitalization. And then I also had GI surgery that year. So it was, it was a pretty awful year. But it got off to a good start with the publication. But it was pretty much downhill after that.
And what was the GI surgery for?
So they had diagnosed me with something called superior mesenteric artery syndrome (SMAS), which basically means that you have a blockage that’s preventing the normal passage of food from your stomach down into your small intestine. And they say that the blockage is at the level of the duodenum, where the superior mesenteric artery is sitting on top of it and cutting off circulation. However, all of my functional imaging tests were normal. So when I did like the barium X ray series, the barium was passing through my system as normal. I also did gastric emptying tests, where you consume the radioactive eggs, and they they track the isotope as it moves through your body. That was also normal. So even though they were seeing suggestions of a structural abnormality on an MRI, just in terms of the dilation of the stomach, and just the fact that there’s narrowing of the artery in the space, that does not mean that I’m having functional consequences as a result of it. But unfortunately, because of confirmation biases, and other psychological factors at play, my doctors stuck to that diagnosis, and they were like, we’re going to have to do surgery or you’re going to die. And they gave me two options, either one, get a feeding tube, or two, get this much more invasive surgery where they would remove my gallbladder and just connect my stomach to my small intestine, bypass my duodenum completely. I opted for the less severe option, because I again was very skeptical that this is what’s wrong with me because of my normal functioning tests. And, you know, anytime I would press my doctors for this, I would say things like, I really think this is IBD; I have blood in my stool. I don’t think this is the right diagnosis. Because, you know, with with SMAS you have pressure, you have uncomfortability, but I was just getting the searing burning pain, where it’s just like, I’m very inflamed. And I was losing weight like crazy, which is, again, something you can see with SMAS. But I just felt like it wasn’t in line with everything else that was going on, like the blood in the stool, the elevated calprotectin that’s highly diagnostic of IBD, not SMAS, right. So but again, my doctors brushed me off when I addressed these, when I voiced these concerns.
Lindsey:
And was your burning near your duodenum?
Nita Jain:
It was not! That was another thing; the location was completely off. I was just like, the burning sensation that I’m having is south of where it should be. If it was SMAS – because it’s not at all in the area where you’re saying that I have a problem. But nonetheless, I got hospitalized just because I was barely able to eat. I was in so much pain. And unfortunately, they had me on an all liquid diet for 17 days in a row. After the surgery, I wasn’t allowed to eat for a while I think maybe there was something. . .
Lindsey:
So I’m sorry, you opted for which version of the surgery, what did they do in the surgery?
Nita Jain:
So I opted for the less invasive procedure, which is a gastrojejunostomy. And basically what they do is they clean out they basically go in into your stomach, feed a tube down through your duodenum all the way down into your jejunum which is the first part of your small intestine. And that is supposed to bypass the area of obstruction so that I can be fed. So I had this feeding tube. It didn’t help me at all. My pain actually got worse because the area where the surgery is, that tissue is getting very inflamed. And the other thing is, it would sometimes get infected because it is essentially an open orifice when you have this feeding tube; it’s exposed to the outside elements and everything. So despite the fact that I would sanitize it often, the chance of infection is pretty high with these sorts of things. And you do have to be really careful about it. But I was not really gaining a lot of weight doing this, which is what they had wanted to see. I was more inflamed than before, with the cardiac issues that I was already having, with the cystitis that I was already having. It was really hard to use the bathroom, just with a tube and managing the feedings around the clock was nuts. The other thing, when you have a feeding tube, they expect you to feed around the clock. And that’s not really good from a circadian standpoint to always have food in your intestine, because then you’re not having the autophagy that normally would have happened at night; the cellular repair isn’t happening. So there’s just a lot of things that you don’t know upfront about having a feeding tube.
Lindsey:
Are you eating regular food? Or are you just using like solutions of, you know . . .
Nita Jain:
Yeah, so they basically had me feed exclusively through the tube. And I really wanted to have pureed food by mouth because, in my mind, I’m like, I can eat by mouth. I should be eating by mouth if I can.
Lindsey:
So wait, where is the tube? Exactly? Where does it start?
Nita Jain:
Yeah. So the tube, it’s going through the stomach, and it’s just passed down into the small intestine.
Lindsey:
Oh, okay. I was picturing it coming through your mouth. Okay, so it’s entering your body midway?
Nita Jain:
Yeah, exactly. Basically the entry point was right below my left rib and I still have a lot of pain from the surgery scars and the incision place because it doesn’t fully go back to normal post surgery. And sometimes, it is one of those things that’ll flare up in terms of pain when it’s really humid outside, stuff like that. But the other thing was, it was so hard to breathe for a long time, because of the fact that it’s so close to my lungs, the incision site, and just I just had so much inflammation there as well, which was not pleasant. But long story short, after about three months, I was begging my GI doctor, please let me remove this tube, nothing good is happening, I’m just in pain. And I’m just suffering and I’m not gaining any weight from it, I think I just want to go back to eating pureed food, because at least then I don’t have to deal with this anymore. Because like the tube’s getting infected, I can’t sleep at all because of how much pain it causes me. I’m just completely miserable, and it’s just debilitating. Unfortunately around the holidays and stuff, it was that time where it would be hard to get me in to have the tube removed. So I asked if I can safely remove it at home. He said, okay, it’s probably stabilized having been 8 to 12 weeks, because you don’t want to remove it before that time period, or it can be a little bit dangerous. So I did end up removing it at home by myself and just not eating anything for I think it was like six hours afterwards just to be on the safe side. So kind of letting that initial peeling process start. And then slowly reintroducing liquids and then purified food and then working my way back up to solid food. But again, it was FMT that I pursued to get that inflammation under control, because the surgery didn’t do anything for me. It worsened my inflammation. And I think the IBD was the more likely culprit, otherwise FMT would not have helped me. It was something functional, it was not something structural, otherwise, I would have not responded to FMT treatment.
Lindsey:
And how thick was this feeding tube that you could just pull this out of your body and leave a hole behind?
Nita Jain:
Yeah, so I think the catheter that they insert the tube is maybe 18 FR, or so. Maybe 20?
Lindsey:
What’s that roughly in inches?
Nita Jain:
Yeah, so it’s less than an inch, it’s definitely less than an inch in diameter, maybe half an inch in diameter.
Lindsey:
And you just pulled this out of your stomach yourself, or your intestines yourself and just left the hole there?
Nita Jain:
No, it’s not like that. Basically, what happens is, it’s held in place by a balloon. And so the balloon is filled with water. So basically, what you do is you take the syringe, and you try to drain as much of that water out as possible from the balloon because that’s what’s holding it against the abdominal wall. And once you do that, then you can start to pull, but it did kind of get stuck near the end. And I was sort of panicking for a while because I’m just like, oh no, I’m gonna have to go to the hospital if I can’t do this myself. But yeah, it just required a little bit of persuasion. Just because the balloon, even when it’s deflated, it does have a certain thickness to it. So you just have to alter your breathing pattern while pulling to get it out but then yeah, I basically put the gauze over it and cleaned the area first of course thoroughly and just waited for my body to start patching itself up.
Lindsey:
Wow. Interesting. I’ve can’t even begin to picture this. Okay, so how are you doing now? I mean, like what percentage are you back to health? You look like you’re in good health to me but I know looks can be deceiving.
Nita Jain:
Yeah, my main concern these days is the chronic cystitis pain. So that’s the most disabling part of my life these days. It’s just because I still have that burning and urgency 24/7 since it first began back in 2015. And I still just have to use the bathroom multiple times a day. It does interfere with sleep because of the pain. There are some things that help in terms of avoiding anything that’s very irritating to the bladder. But that only gets me so far, because I still have that pain regardless. So that is something I’m still trying to troubleshoot as far as dealing with all the biofilms in the bladder that I have, and hoping that I can have remission and some sense of normalcy, hopefully.
Lindsey:
Do biofilm busting herbals help at all, or is that pretty much only hitting the digestive system?
Nita Jain:
Yeah, most of them don’t make it all the way to the bladder to really have an effect. A lot of the time, the stomach acid will degrade those enzymes before they can really have much of an effect. But I have tried pretty much everything under the sun in terms of herbal antimicrobials, in terms of biofilm busters, like Interfase, stuff like that. But yeah, I haven’t been able to appreciably move the needle. That being said, it is a lot more under control than it was when it first began. When it first began, the pain was so severe that I would go six or seven nights in a row without sleeping.
Lindsey:
That’s horrible. I wouldn’t wish it on anyone.
Nita Jain:
It was just horrible. It was one of those things where I had white blood cells in my urine, but the cultures were coming back negative. So they were just like, yeah, sorry, we can’t treat you sort of thing.
Lindsey:
Yeah, yeah. No, I know someone who’s got the same problem. And what about oxalates? Did you go down that path at all?
Nita Jain:
Yeah, I did try a low oxalate diet to see if that was something that was irritating my bladder, just removing leafy greens like kale and things like that. But I didn’t see any benefit from doing that. So I was like, let me just put them back into my diet because it does provide good fiber and good nutrients.
Lindsey:
Yeah. So did you remove other things like berries and nuts and all the oxalate foods?
Nita Jain:
Yeah, definitely. For sure.
Lindsey:
Okay. Yeah. Just curious. Well, I hope you get to the bottom of that. So but your IBD symptoms are resolved? And the digestive system is working well now?
Nita Jain:
Yes, I believe so. So I’m thankful for that, at least. And I’m just hoping with this last piece of the puzzle resolved, I can finally feel a little bit more whole.
Lindsey:
Yeah, I’m sure. And one more question related to the FMT’s that I’m curious about. You mentioned, I responded to a certain donor, or I didn’t respond to another donor. So when you’re getting these samples, are you’re getting like, okay, here are 15 frozen samples of donor x and 15 of donor y, and you get like 45 total? With what frequency were you taking them? How did that all work? And could you request a certain donor like, oh, I’d like more of this guy?
Nita Jain:
Yeah, actually, after I responded to one donor at Taymount, I really did want to request that donor again, but they said that they don’t operate that way. So I think a lot of it’s dependent on the clinic itself. And there are also some clinics that prefer this multi donor approach. They say that, if any one donor doesn’t work out, then you can overwrite it with other donors. But I sort of advocate for a more precision approach versus this, I don’t know, Motley Crue approach where you’re just throwing random samples at the person because they have this idea that whatever is good is going to stick. But that’s not how it works. I mean, pathogens can easily colonize the GI tract. And I think it’s better to just be very intentional with what we’re administering in terms of making sure that these donors are safe, and that they’re enriched and productive bacteria; that they’re devoid of any pathogenic bacteria. I think we just need to be more deliberate in the process in how we go about it. But when it comes to frequency, a lot of this depends on the condition that you’re trying to address as well. At least for me, once I started doing it in conjunction with an autoimmune protocol, the benefits would last until I did something that would really skew the balance, like take antibiotics for the cystitis or something like that.
Lindsey:
The benefits from one donor?
Nita Jain:
Yes. But sometimes, with certain conditions, you might have to do it weekly for a number of months. Like I’ve definitely seen that addressing ulcerative colitis sometimes benefits from a more long term approach versus things like IBS, for instance.
Lindsey:
Are you doing it weekly?
Nita Jain:
Yeah, so I currently just do it if anything happens that throws me off, that throws me into a flare, and then I’ll administer it, and I’m good until I’m not basically.
Lindsey:
Autologous or are you getting samples still from somewhere?
Nita Jain:
I’m still getting samples. Actually, what I do is I try to make the samples last as long as possible, like a lot of the time, they’ll give you 60 CC’s. But I mean, the fact that the stool is just so densely concentrated with the bacteria, especially because most of these clinics, they filter out the food or any of the other debris that might be in the sample. So it’s basically just like microbes suspended in a saline solution of sorts, maybe some cryoprotectant, a little bit of glycerin to preserve it so that when you freeze it, they’re not damaged (the bacterial cells). But yeah, at least for me, I just make a little go a really long way. So a 60 cc sample, I can easily take it 10 or 20 times just because it doesn’t take a lot, I feel.
Lindsey:
And are you doing it in capsule format or enema format?
Nita Jain:
I’ve been doing it with enema format, and I basically use a bit of a longer rectal catheter. I know that some doctors have this idea that unless you’re doing it by a colonoscopy, where it’s being delivered, at least to the sigmoid colon that it’s not going to make a difference. But I haven’t personally noticed anything like that. I noticed that even with a rectal catheter, even with an animal bottle, I still receive the benefit from FMT, even though I’m not being sedated, it’s not getting as far up as it needs to. But nonetheless, I mean, it’s a live product. So the bacteria they know how to colonize.
Lindsey:
Yeah. So how long and wide is the rectal catheter?
Nita Jain:
So I use an 18 FR rectal catheter, and it has two eyes. So basically, it has a rounded tip. So that makes for pretty easy, painless insertion, and then it has two eyes on either side. And that’s how the material is delivered into the colon when you push the syringe through.
Lindsey:
Okay, so with with the cystitis, I imagine you must have to take antibiotics frequently.
Nita Jain:
At this point, no, I’m currently not on antibiotics right now, just because I have not really seen much benefit from it in the long term yet. I’m still in the process of doing more targeted testing. Because I think for for me, I’ve been on almost every antibiotic class to address this cystitis. But I think with biofilms it’s just one of those things where there’s a lot of layers, there’s a lot of bacteria. And sometimes, once you treat one round, you’ll notice that there’s different uropathogens than the previous time, then you’re targeting those. And sometimes it feels like a whack a mole type of situation, but I’m trying to be very targeted about it rather than taking antibiotics.
Lindsey:
So you’re not constantly having to do it. So you’ve still got remaining. And the most recent samples that you feel are good for you came from where?
Nita Jain:
So the donors that I’m using right now came from Microbiomes LLC. And I’ve had mixed results with their donors as well. But I’m just using the one that I responded well to. And the only problem is, I’m not sure if I can get this donor again. So I’ve kind of been wanting . . .
Lindsey:
But you have an idea on the donor that you could say I’d like this donor, if possible.
Nita Jain:
Yeah, if possible. But then, when you’re dealing with human material, it’s always a question of availability. Even if you get it once, can you get it again? And right, it would just be great if we could make something synthetic.
Lindsey:
Yeah. And so if somebody were were wanting to try and pursue FMT, they can reach out to this Purety Clinic to do it, or Microbiomes LLC directly?
Nita Jain:
I was not able to get in touch with Microbiomes LLC directly. So I went through Purety Clinic personally, but things are changing all the time.
Lindsey:
And is that near you? Or did you go in person?
Nita Jain:
I did not go in person. I’m in Georgia and Purety Clinic was in California. But I remember during the pandemic, a lot of clinics had ceased operations, just for concerns about transmission risks through stool even. So, we were waiting quite some time before operations could resume, before I could get samples again, just so much is dependent on the circumstances. Well, it would be great if it wasn’t something that relied on humans to provide the material for.
Lindsey:
Yeah. Okay, well, we’ve gotten a little bit over time, but there were a lot of interesting nuances to your story. Any final parting words for anybody who’s dealing with chronic health issues and is considering FMT?
Nita Jain:
I think just prioritize health and safety, safety and efficacy as much as possible. And regardless of who you’re going with in terms of a clinic or your doctor’s office, a hospital, ask if you can have the the testing results for the donor. Even if they don’t give you the exact results of the donor specifically, ask them what they’re checking for, in terms of what, like make sure that they’re at least doing the bare minimum in terms of checking for the patient’s metabolic health, CBC, CMP, making sure that they don’t have Hep A, Hep B, Hep C, just making sure that you’re covering as many bases as possible. Most of them will also be doing culture, like stool ova and parasites, things like that. But if possible, ask them if they’re also checking to see if their donors have protective bacteria in addition to not having the pathogens. And do your research as much as you can, then feel free to reach out to other people. But I think diligence is really the top most concern and, do take your time if you can. I know it’s really hard, especially when you’re suffering a lot, you can be in a place of desperation, but please do prioritize the safety as much as humanly possible.
If you’re struggling with dysbiosis, diarrhea, constipation, leaky gut, candida, IBS, IBD, or other gut health or all over body problems, you’re welcome to set up a free, 30-minute breakthrough session with me (Lindsey). We’ll talk about what you’ve been going through and I’ll tell you about my 3- and 5- appointment health coaching programs in which I recommend lab tests, educate you on what the results mean and the protocols used by doctors to fix the problems revealed. Or if you’re ready to jump in right away or can just afford one appointment at a time, you can set up an 1-hour consultation with me.
