Addressing Chronic Health Conditions Through Microbiome Modulation: One Person’s Experience with Fecal Microbiota Transplantation
From Bedridden to Running. Navigating Healthcare’s Blind Spots In Search of Health Beyond Conventional Means.
Background & Health Issues
Living with undiagnosed health issues made navigating daily life and the healthcare system extremely challenging. Physical impairments, cognitive issues, and psychiatric symptoms left me increasingly dependent on others for support. I even spent a good two years trying to get medical support and get on disability. It was a complete waste of time for me. All I did was spin my wheels trying to jump thru means testing hoops and vault paperwork hurdles. It sent me spiraling in a deep depression as I was too disabled to even get on disability.
Exploring my family history, I dove into how my grandmother had suffered from Multiple Sclerosis (MS) for decades, providing some context for my neurologic problems. Curious about my genetic vulnerabilities, I was donated money to get a 23andMe test (thank you!). Before seeing the results, I predicted a number of liver mutations, and a high likelihood of Crohn’s Disease (a form of Irritable Bowel Disorder) based on modeling my constellation of horrid intestinal symptoms, including rectal bleeding.
The subsequent analysis of my raw genetic data not only flagged a risk for MS as expected, but also pinpointed markers associated with Crohn’s Disease and liver parameters. Only after, it was revealed my grandmother had battled Crohn’s since age 20. This accurate self-diagnosis to the point of literally predicting my genes underscored how deep I went into deciphering my own complex medical profile.
I was in bad shape. My inability to stay employed and challenges I faced with my health seemed insurmountable if I didn’t double down on my health issues. I originally sought out ways to treat and deal with Autism and to conquire my Major Depression. Lack of access to healthcare (and very limited support for my issues) fueled a determination to investigate treatment routes outside traditional care channels. My journey led to microbiome science and utilizing fecal transplant therapies to modulate chronic inflammation at its source - an undertaking that would transform my health outcome beyond expectations.
MS seemed to be an inflammatory disorder that impacts myelin (white brain matter). Studies are coming out about how autism seems to have white brain matter problems. I thought: what if these issues were related? I’d also been thinking a lot about how much the water in West Fairlee / Fairlee etc were contaminated with cow-feces laced with antibiotics, and the washwater of the ely copper mines. How much of my health issues were due to contamination from drinking downsteram of a literal superfund site? Could it just be my gut was messed up? Could this be tied to the weirdly high rates of autism/developmental delay in the region (that everyone attributed to inbreeding)?
I don’t know.
“Results indicated an association between copper levels and gender with MS distribution, whereas UV exposure and urbanization showed no significant association with MS distribution. When copper concentration was increased (by 50 ppm), the incidence of MS was nearly three times higher.” MS More Frequent Among Females Exposed to High Levels of Copper, Study Shows
But if the shoe fits…
“Excessive Cu exposure can modulate a huge number of cytokines in both directions, increase and/or decrease through a variety of molecular and cellular signaling pathways including nuclear factor kappa-B (NF-κB) pathway, mitogen-activated protein kinase (MAPKs) pathway, JAK-STAT (Janus Kinase- signal transducer and activator of transcription) pathway, and NOD-like receptor protein 3 (NLRP3) inflammasome.” The Dysregulation of Inflammatory Pathways Triggered by Copper Exposure
Should I do this myself?
NO! FUCK NO. I am not a doctor and this is NOT medical advice. FMT is risky and it was more of a YOLO last resort for me.
I’ve also been studying this stuff non-stop for the past 6 years, lol. Being autistically obsessed with this space is the only reason I feel it is even remotely safe for me to attempt this, and it is not something I want others to try on their own. I spent over a year preparing for doing it, and even then I felt it was one of the most unsafe things I’ve ever done.
Part of my investigations into my own health have made it clear that my health issues are unique. I can say that confidently because I have seen (and predicted) my own genetics. I have some weird problem with cholesterol tied to the Multiple Sclerosis demylination thing (myelin is a kind of fat), so my body doesn’t seem to want to make Vitamin D or most cholesterol based hormones properly. I’ve had to figure out how to eat a ton of cholesterol without giving myself a heart attack. This is tied to the autoimmune issues I have -> its rare for men to get MS because testosterone acts to reduce immune response. That doesn’t work for me for some reason.
So its hard for me to even give dietary recommendations to people because my diet is highly tailored to my own oddities. But I can say that routing out inflammation causes made a huge difference to my bowel health. After a month of just passively tracking my food and bowels with a food tracking app called cronometer it was clear as day what was causing me issues.
Most of this stuff wouldn’t be in vet or med school because it is literally so new that my prediction on this space come out daily. E.g. here’s a paper from AFTER I did my trial that talks about IL-22 & IL-17 and the mycobiome in mice. Mucosal fungi promote gut barrier function and social behavior via Type 17 immunity
IL-17 and IL-22 are both heavily involved in the immune resposnes we see in MS, so its no wonder that some of the drugs that have been working to treat MS also work to downregulate and adjust fungal infections etc. I have an gigantic thread on twitter exploring IL-17 and IL-6 (IL-6 also impacts fungal infections) from back in March 2020 because of learning about it in a species of bat and hibernating animals.
I can’t repreat this enough: I am not a doctor. I don’t want to be a doctor either. In fact fuck medschool; I’d reather recreate modern medical science from scratch.
I’m not joking there either. For some context, I’m litterally teaching myself Ancient Sumerian so I can read ancient medical texts that discuss feces cures. This is an obession. Last I checked I read on average about 1000 science papers a year, and occasionaly hudreds a day. I started logging them on my self-exploration Are.an Group. Also, I am quite possibly litterally insane thanks to all of the weird autoimmune issues. So huge grains of salt are needed here.
To be very clear. I was willing to die. I didn’t want to die, and I took precautions against risks like E. Coli… But even FDA approved FMT donors can be unsafe.
Doing an unhinged FMT treatments like I did is not something I recommend. The risk of getting an infection & dying from a poorly done FMT is very high if you are not getting help from a doctor. And even then while extremely rare, it’s possible to contract an infectous disease and die. Bacteria + parasites in one own body may have been kept at bay via diet and immune function. Many cases where naïve transfer has lead to, bacteremia, sepsis and death.
I. Am. Not. A. Doctor. If you think some random autistic guy eating dog shit is medical advice… Please get help.
Initiating FMT Treatment
Guided by insights from my genetics and family history, and with some less aggressive experiments (and some previous succesful experiments in diet shifts and fasting), I began investigating fecal microbiota transplant therapies in early 2021. I looked at it as a potential route to modulate the gut-immune axis. By late 2021, baseline microbiome profiling was conducted using Viome, revealing dysbiosis linked to inflammation.
I was fortunate to have a willing test subject before then. My GF’s dog was losing the ability to walk (idopathic coonhound paralysis), and had major anxiety. Her particular breed of Coonhound (Red Tick + Treeing Walker) can literally climb trees like a cat and have amazing blance normally, so the lameness in her legs was noticable. Her sister had to be put down because of a mood disorder (it was like she was forgeting her owners). So I could test it on her to see if there was a chance it would work.
So AnimalBiome’s DoggyBiome products were selected for their oral capsule delivery system, and I gave her them for a month. She started being able to walk reliably on her hind paws and her mood improved drastically, as well as her bowel health.
So, knowing FMT had achieved remission of previously incurable intestinal diseases, and it seemed to work on the dog, I decided to self-administer the same dog biome treatments to myself beginning January 2022.
Yes. I ate dog shit in a pill.
For one month, I ingested freeze-dried stool capsules daily. Sourced from the same screened donors as the dog, this approach introduced balanced flora orally to restore my dysbiotic GI environment. Precise dosing aimed to maximize engraftment safely while repairing microbiome composition.
My goal was to recalibrate the microbiome-immune dialogue and reset inflammatory pathways driving illness. It was a calculated risk driven by determination to address root causes through microbiome modulation rather than just manage symptoms. The transformative results would far surpass all expectations.
Outcomes & Results
Results from the one-month FMT regimen were remarkable. I noticed substantial reductions in several debilitating symptoms that had plagued me for over a decade including mobility issues, cognitive impairments, anxiety attacks and chronic pain. Many of my autisim associated traits vanished. I felt like a different person.
Within 2 weeks of dosing, my crohn’s symptoms vanished. Improvements extended beyond my gut as well, with objective grip strength assessments showing substantial gains. Indirect biomarkers also hinted at immune system modulations and declines in autoimmunity.
But more importantly, I went from bed-ridden for nearly 3 years and hardly able to stand without fatigue to being able to balance on my tip toes and even run. I also stopped stuttering and my ability to communicate drastically improved, no longer having bouts of aphasia.
Follow up Viome testing in March 2022 found my microbiome diversity and composition had been successfully reconstituted, matching healthy profiles. Anti-inflammatory bacterial strains increased significantly while pro-inflammatory types declined sharply. Strikingly, my biological age had decreased by 10 years. I had known and predicted changes in my mTOR etc, but the extent of such was still suprising even to me.
On January 7th, 2023, a third Viome test validated these positive changes had not only endured but intensified, with microbiome health metrics now all scoring in normal healthy ranges, and diversity hitting maximal levels. Litterally maxing out the meter. Remarkably, all relevant biomarkers and functions had stabilized and then went on to significantly improve compared to pre-treatment markers.
A suprise replication attempt
Due to an unfortunate circumstance, I also found myself with an opportunity to replicate my findings. My girlfriend had been having complications from a recocuring thrush infection that was being mistreated by her doctors. After a year long ordeal, we finally got her to see an infectious disease specialist who knew what he was doing.
Sadly, a rare side effect of Fluconazole developed and she had severe and obvious problems. Bowel issues are expected, but she was experiencing quite drastic and debilitating symptoms and disordered bile in stool. Continued bowel health issues over months showed liver dysfunction was not improving and was getting worse.
Given the difficulty and frustraition / delays in the medical system we faced, I proposed she try the identical FMT regimen I underwent. We leveraged my experiences and extensive research here to ensure we did this safely. I wish I had more access to healthcare services so we could have done proper testing to see the liver parameters change and document the gut health shifts in more detail.
She took the same pills as myself between July-August 2023. Not even 5 days into this, a report was surfaced about how fecal pills / “Crapsules” could possibly treat liver conditions through microbiome modulation. Their clinical trial in the UK is just beginning recruitment. Yet here I was already seeing firsthand proof of FMT resolving life-threatening liver issues for my girlfriend within two short weeks.
For me, this unique situation validated the therapeutic potential of FMT even in non-GI contexts, serving as independent corroboration that targeting the microbiome through non-invasive means could resolve otherwise treatment-resistant illnesses. She’s still not entirely free of bowel issues, but normalization of bile in her stool (and healthy fecal coloration) has improved her situation dramatically.
Next Steps & Opportunities for Research
My profound recovery alongside my girlfriend’s stabilization point to FMT warranting rigorous clinical investigation. If confirmed as non-placebo, microbiome therapies could revolutionize treatment for disorders like MS, autism, and more. Through hindering a major source of inflammation at its source rather than symptoms alone, this may even manifest in enduring cures.
Even if placebo-driven, the staggering magnitude of impacts observed—reversing decades of debilitating mobility, cognitive and physical impairments—suggests FMT harnesses remarkably potent mind-body healing abilities. Placebos are no trivial matter when reversing conditions deemed permanently debilitating.
But the vast effect sizes witnessed, such as boosting grip strength 100% without exercise, transforming from barely ambulatory to running within weeks, strongly indicate underlying mechanisms more profound than placebo could explain. These drastic improvements, well beyond typical margins of error or random fluctuations, underscore the potential significance of further controlled study. The sizeable clinical transformations achieved first-hand demand mechanistic exploration by those studying optimization of health and longevity.
More research is still needed exploring how microbiome transplantation elicits systemic therapeutic effects, modulating distant tissues from the gut. Longitudinal studies directly comparing FMT to existing MS/Crohn’s therapies could validate its superiority through cost-effectively achieving remission without adverse effects.
Self-experimentation lacks controls but provides valuable hypotheses. My experiences broadly reopening doors to normally inaccessible aspects of daily living emphasize FMT’s potential for remodeling dysfunction rather than simply management. Partial replication with my girlfriend supports microbiome modulation warranting formal investigation for a diversity of conditions.
Future study personally analyzing immunological, metabolic and neurological markers pre- versus post-treatment could begin unpacking this intervention’s mechanisms of multi-system influence. Ongoing maintenance of remission also suggests durability lacking in other interventions. Overall, I believe further research is justified based on our observations.
Theories on Mechanisms of Action
While double-blind studies are needed, our first-hand experience sheds light on potential mechanisms whereby FMT produced such powerful multi-system effects. Mounting research implicates the gut-brain axis and interactions between microbiota, intestinal immunity, and systemic inflammation.
Precisely how restored microbial diversity recalibrated inflammation throughout my body remains unclear. However, FMT has been found to modulate ratios of protective Treg and Th17 effector T-cells in preclinical models—shifting immune balance away from autoimmunity.
Normalization of gut barrier integrity is also theorized. The concept of “Leaky gut” (perhaps, better thought of as a tight-junction instability) facilitated by dysbiosis permits translocation of microbial antigens, priming aberrant immune responses involved in my MS and autism. FMT’s repair of this barrier likely interrupted vicious inflammation cycles.
Studies show bacteria within Lactobacillus species communicate bidirectionally with neurons via metabolite signals and the vagus nerve. Imbalances in such strains appear to have been linked to my dysbiosis. Engrafting balanced flora likely rebooted production of neuroprotective short-chain fatty acids while dampening pro-inflammatory mediators. Restoring my gut’s ability to generate healthy levels of mucus acting as a more protective barrier against bacterial ingress.
Follow up Viome testing also showed shifts in markers like mTOR, AMPK, sirtuins and IGF-1 indicating anti-aging effects at the core of remodeling innate systems and neurodegeneration through multi-organ immune resetting rather than targeting symptoms alone. Future studies correlating these changes may unveil mechanisms by which FMT confers anti-inflammatory and anti-aging benefits.
I also suspsect profound changes in nutrient intake thru improved bile health and SCFA absorption, perhaps even improved B vitamin synthesis via newly introduced microbes. And as for the copper problem mentioned earlier, it’s likely that my metal chelation factors have improved dramatically as well.
It’s hard to pinpoint any one thing that could be causing such a shift because in the end the entire point was to hit as many levers as possible.
Challenges & Barriers to Further Progress
Despite first-hand successes, mainstream medical interest and funding for microbiome-focused modalities like FMT remain limited. Greater research momentum is still needed to replicate and expand on initial findings.
Formal trial data and mechanistic understanding lag behind anecdotal reports like ours. Limited research momentum reflects barriers preventing FMT from achieving its potential. Formal clinical trials and mechanistic studies exploring FMT have been few, reflecting a need for more effective medical research. Initiatives that aim to address this, recognizing microbiome therapies may hold answers for myriad issues currently lacking satisfactory treatments, are important for progress.
Our medical research paradigm suffers from gaps in priorities that inhibit progress on therapies lacking profit incentives. Valuable avenues are underfunded due to lack of profit incentives, as seen with mTOR pathway research beginning in 1990s. Limited momentum stems from a system preferring patented drugs and seeking return on investment over integrative modalities. Insitutional research momentum is impacted by patentability but opportunities likely exist beyond what funding priorities currently target.
While appropriate oversight is essential, more could be done to accelerate rigorous study of microbiome therapies within ethical boundaries. Reform enabling exploration beyond those that would result in patented drugs could accelerate progress.
Progress has been slow partially due to reasonable regulations around safety and efficacy testing. However, the current trajectory of FDA in this space consists of what Cory Doctorow has coined as ‘Monopolizing Turds’. Restricting safe and effective compettitors to pharmaceutical industry players so that large corporations can afford to invest and expect a financial return?
It took 10 years for the FDA to approve FMT for just C. Diff infections despite anecdotal successes for years. AFAICT, Millions were spent on what ammounts to bureaucracy, money that could have gone to research instead. And now safe and cheap human sources of fecal transplants are being rejected because it will make big pharmaceutical compines lose money if they do these expensive trials? Frankly, that’s absolute dog shit.
This situation reflects how the current paradigm requiring pharma patents and assininely slow clinical trials are structural barriers. It reinforces incentives preferring profitable remedies over integrative solutions. Progress has been slow due to these barriers in our medical research system.
Had I waited on institutions like this to reach my condition’s solutions, my health would have further declined. I wouldn’t have been able to afford it either. It cost me <$1000 to aquire & make use of animal based fecal matter transplants, including the fairly epensive gut tests. And while I did this out of desperation (and I don’t recommend others take this route), the ones the FDA is approving are having a cost of $10,000 or more.
My situation underscores the human costs of delays in researching promising but non-mainstream therapies. In my exploration, I’ve learned how we’ve employed FMT-based cures for thousands of years until Western biases emerged in the 1850s. Even now, most studies on my conditions are only just getting started, barely out of mouse trials if at all.
My successes highlight the potential such alternatives hold if not stifled by a system preferring patented remedies over integrative solutions. New paradigms are still needed to properly leverage scientific resources and ecological wisdom for improving lives. Reform is required to develop healthcare capable of maximizing human potential instead of just seeking out what can be made profitable in an adversarial healthcare system.
The usage of fecal based therapies worldwide for millennia shows remedies are available beyond what current priorities support. The opportunity exists to transform to properly leverage scientific resources for improving lives, without constraints of pharmacological profits or clinical trial bureaucratic barriers.
Thanks to my obessive explorations into existing research I have achieved what would have once been considered a miracle. In my explorations, I have come to learn that I am not the only one who’s done so with FMTs. It is beyond frustraiting seeing the systems we currently use to fund medical reserach grind these opportunities to dust.
Concluding remarks
In closing, my journey from debilitation to restored health through microbiome modulation demonstrates untapped potential within integrative paradigms. I hope in sharing this journey I might inspire more scientists and researchers to invest time and energy into exploring this space. Basic research is needed here to explore this space beyond just some obsessive autistic guy sharing his story about deciding to eat dog shit in a pill.
While more serious studies are still needed, the depth of transformative effects achieved first-hand—and subsequently with another case—demands open consideration of alternative routes. My experiences reveal lost opportunities when biases inhibit progress towards optimizing human welfare.
With humanity on the cusp of microbiome-based revolution, reforming research priorities to properly leverage scientific and ecological wisdom offers hope to millions suffering without satisfactory solutions.
By sharing openly about reclaiming my future, my aim is to help catalyze momentum toward a healthcare system empowering all people to reach their fullest potentials. If researches are willing to take up this cause, I have also [published what I’ve done] to try to do this as safe as I can.
I walk again. And I run. And I will keep running circles around the existing paradigms until everyone can catch up. Cuz I am autistic and I got that dawg in me.