30
votes
Fecal microbiota transplant: Inside the black market for human poop
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- Title
- Inside the Black Market Where People Make Thousands of Dollars Selling Their Poop
- Authors
- Luke Winkie
- Published
- May 19 2024
- Word count
- 3251 words
I have some personal experience with FMT. Back in 2021, I had a series of increasingly severe relapsing C. Diff infections (brought on by the use of the antibiotic Rifaximin, which ironically I was prescribed to treat IBS). For the last relapse, I was in the hospital for several weeks, during which time I lost like 30 pounds because I could not eat anything substantial. The doctors were just pumping me full of oral vancomycin (which is a good first line treatment for C. Diff) but at that point it wasn't doing anything.
I had read about FMT being used to treat C. Diff, and asked my doctors about it, but they said that it would not be accessible because of the pandemic, and that I should just keep taking the vancomycin. I managed to find an open-label clinical trial for FMT nearby, checked myself out of the hospital, and received a nice li'l poop enema. It's crazy how quickly it worked. In less than a day, I went from having constant 6/10 abdominal pain from incipient pseudomembranous colitis to maybe 1/10 abdominal pain, and I could suddenly eat white rice and chicken without pissing it out my ass 3 hours later (I apologize for this mental image). FMT is pretty much a miracle cure for C. Diff.
I have no doubt that FMT can also be effective for other conditions, but the FMT I received did not help my various chronic illnesses (severe ME/CFS, IBS, small fiber neuropathy, etc.). The article suggests that there is not enough data to really assess its efficacy, but really this is secondary to the main issue, which is that it's hard to get people to donate their poop. The notion that only "0.1 percent of the human population possesses the healthy, unperturbed, disease-resistant microbiomes necessary to produce quality, medicinal stool" is probably true, but if as many people donated stool as donate blood, then we'd be seeing a lot more 'wildly successful' FMT stories, and it would also be easier to research what makes stool high quality (and possibly to culture high quality stool without the need for a donor).
But until such time, HumanMicrobes is doing what the medical establishment will not: recognizing the risks and benefits of FMT, and allowing people to assess these factors for themselves. It's easy for armchair physicians to call DIY FMT foolhardy, but you might think differently when you are suffering from an illness that is ruining your life, and the medical establishment has failed utterly to treat it or even recognize it.
I find it especially galling to paint FMT as dangerous because it's unregulated. The screening questionnaire Harrop employs is far more extensive than the one used for the open-label FMT trial I was part of, which merely counted out people who had suffered GI ailments or had taken antibiotics in the last six months (for the most part), without taking into account lifestyle factors, historical stool quality, etc. I suspect that the bureaucratic mindset that often infects clinical trials (and almost always infects regulations) will fail to really grapple with the nuances of donor stool quality. And as a result, I doubt FMT will ever be fully researched by the medical establishment for treatments other than C. Diff, for which it is so ludicrously effective that even relatively poor quality stool works well. This is why I think the 'black market for poop' is ultimately a societal good.
Interesting side note to all this - Michael Harrop, who runs HumanMicrobes might ultimately be right about everything related to FMT, but he is also a 100% certified asshole. He had a big presence on Reddit (username MaximillianKohler), but he was constantly getting into petty arguments with people and was eventually banned. It was nearly impossible to disagree with him about anything, no matter how carefully and humbly you approached the conversation. He had a huge victim complex and I saw numerous people bait him into unhinged rants which I think soured more people on the concept of FMT than he ever helped (at least on Reddit). It's kind of a shame, but maybe this is the only type of personality that ever stood a chance of doing something so defiant and radical as starting a black market for poop. The article mentions he was threatened by the FDA, and I really wonder whether he's constitutionally capable of dealing with that, without getting himself into deep shit (ha) with the government.
I've had a few run ins with Harrop in an unrelated subreddit and wanted to add my experience. I will say, I'm completely agnostic to the efficacy of FMT and if people want to advocate or open up access to it, go for it.
Harrop, however, is an asshole and dangerous. He was banned from Reddit and rightfully banned here. Just look at his janky ass website. Slate already mentions the shitty stock images and the Google doc used for records, but there's even more like how so many of his citations just link to his personal rants or how they promise 180k/yr for selling shit. Not scammy at all. What I didn't see was any details on Harrop's qualifications, which as far as I can tell is impossible to find or non-existent. (edit : according to this, his last formal education is high school... )
What is known is can be easily found in his blogspot and medium articles ranging from unhinged rants about the downfall of humanity, diatribes and personal grievances on censorship , a bizarre post about attractiveness, arguing for eugenics etc etc. None of this comes off as someone who should be trusted with your health. I mean the sheer fact he claims FMT could treat everything from IBS to diabetes to Alzheimers should be a red flag in itself. Honestly he's basically a charlatan and a quack but his danger comes from the fact that unlike a charlatan/quack, he's a true believer who gish-gallops his way into getting the vulnerable and ignorant to buy into his bullshit.
Honestly, if anyone else were doing this in a more transparent and honest way, I'd probably not care. Don't promise any outcome, just tell people this is the purported source of shit , good luck , and be on your way. But let's be honest, the grift works better when there are promises attached to it : Joe Rogan and Gwyneth Paltrow have shown that. It's even more convincing when you can cite what looks to be a scientific paper with some tenuous link between your suffering and FMT. But simply believing what you do works doesn't make it any more effective and honestly, the Harrops of this world shouldn't be tolerated.
edit : removed links, I don't want this clown getting any traffic. Also Harrop claims to have screened hundreds of college, professional and olympic athletes. Think about that, you really think of hundreds of the upper echelon athletes are submitting their shit to some random ass dude running a janky ass website? Or is the more likely that this dude's prolific online behavior and ability to just be an asshole has motivated people to troll the fuck out of him. Honestly, I hope the FDA nukes his whole operation.
Thanks for the context, agreed that this sort of thing should be called out.
There are so many, and a high concentration in the world of alternative health.
Which is too bad because there are real solutions to be found for people who can't get help elsewhere. Many based on solid science that just hasn't had the decade plus it often takes to filter into mainstream medicine. Well much less if you have pharma cash to push it through. You don't even necessarily need good science then.
I'd locate FMT for things other than C-Diff well outside the realm of solid science for now.
I believe people have every right to try it in spite of that but it's absolutely the job if the regulatory agencies to make sure that the Harrops aren't the ones giving it to them.
Or donors could be evaluated and given recommendations for how to improve their ability to donate. Like how you might be told to supplement iron before donating blood.
I don’t know how useful that would be. Most of the things that affect your microbiome, for the most part, are lifestyle related and take weeks before they have any effect.
Imagine a fairly average American for a moment, who lives a fairly sedentary lifestyle and has restaurant food 2-3 times a week. Imagine they get told they need to adopt the healthiest lifestyle for their fecal donation. They have to eat a whole foods plant based diet - one that eliminates all restaurant food, all animal derived products, all processed foods, salt, sugar, and oil. They will need to stop drinking and taking any drugs, perhaps even everyday ones like aspirin. They will have to adopt an exercise routine they adhere to daily. How long do you think it will take a person to adapt to that kind of lifestyle, to where they are adhering to it every day and do not feel a need to “cheat”? Now add another 2-6 weeks for their gut flora to adapt.
(Do note that I haven’t actually heard anything about exercise affecting gut flora, but given that it has drastic improvements in overall health I wouldn’t be entirely surprised to see it has an effect on this part as well)
I think it depends on the strictness of the rules - but I’m already much healthier than the average American. I have a boss who lives like that, though. Only whole foods, very little animal products, almost no added sugar in anything, eats restaurant food once per week in the form of a burrito, etc. For my personal health I’m happy with where I’m at - I exercise daily, eat dairy, very little meat, lots of beans, little alcohol, but still eating sweets most days. However as someone that donates blood in some form about once per month I’d be willing to adapt my lifestyle to help others more. I might not keep the changes forever but I also might really enjoy how I feel and stay super healthy.
That's great! Living well to help others is an honorable trait. Honestly, the standard American diet is so terrible that you don't need to follow the gold standard exactly to get pretty good health benefits. You can eat bad things sparingly, but the problem is that a lot of people don't have a good grip on what that means, and what an average meal should look like.
I look forward to more research and finding out how to access a fecal matter transfer safely from a certified supplier. Like anything else in the medical field, you can be sure there are labs working overtime behind the scenes to find out how effective this can be and then hope to corner the market so they can sell an expensive miracle poop pill. If its possible it'll happen.
Meanwhile I have a great deal of sympathy for those who suffer from gastro problems. Ive never had anything more than stomach cramps for most of my life but suddenly, during covid, I developed severe gastrointestinal pains. They were so bad one day when I was on a road trip that I pulled over because I was in too much pain to drive and there was a point that I thought I might pass out. It was intense and lasted for 6 hours and there was no way to get relief. I honestly think getting stabbed would be less painful. My daughter (an MD) asked why I didnt go to emergency, but I was in so much pain that I wasn't even thinking straight.
Fortunately I have a med that seems to keep it at bay and it only seems to be a very intense case of GERD. Gastroesophageal reflux disease. But in the moment of that attack if someone had told me they had a solution that would calm my gut, but it would involve an awkward enema and cost $5000 I would've paid them in a second.
I got one of the early Clostridium difficile cases in 1996, before there was much recognition that the newer fluoroquinoline antibiotics like Cipro could cause it to flourish, and no specific tests were available. To say that it changed my life would be an understatement. I lost 40 lbs. in 30 days, becoming severely underweight and malnourished. I was too feverish and debilitated for school or work for three months, dropped out of medical school, and it took over a year for full recovery. It's amazing that it's now treatable with fecal transplants.
PSA: If you have persisent fever, painful abdominal cramps, and severe diarrhea during or after antibiotic treatment, see your doctor right away. C. diff has become increasingly common with use of more powerful antibiotics to overcome resistant bacteria. It's an endemic hospital and care facility infection because C. diff forms disinfectant-resistant spores.
I completely understand why people would try self-treatment for other bowel disorders. At the same time, using unprocessed feces really is very risky, even with good donor screening. As the article suggests, healthy people can carry dangerous pathogens that their immune systems easily control, but cause serious or fatal disease in people who already have compromised bowel integrity and immunity. This is in "kids, don't try this at home" territory.
We don't really understand what constitutes a "healthy" microbiome. It's not possible to culture many of the 3,000+ organisms whose DNA was identified by the Human Microbiome Project. Just transplanting a random selection from an apparently healthy person might work in theory, but each person has their own individual acquired immunities and tolerances. Again, as the article mentions, one of the people who ingested fecal material was sick for a few days before their new ecosystem got established. We've all heard stories about turismo, the gastrointestinal illness suffered by visitors to a new location from consuming water or food that's harmless to locals.
Mirror, for those hit by the paywall:
https://archive.ph/UpNej
I read at one time that the feces used doesn't have cancer cells filtered out. Is this still the case?
Very interesting. I have autism and also gastrointestinal issues (probably related), so I wonder if a fecal transplant can be something that can help me with that in the future.
Be sure to wait until there's more research and practical experience. A fecal transplant can do as much harm as good, depending on the source and your own biology.
Yes absolutely. I'll probably wait at least 10 years ha ha.
Who has time to think about safety when there are 30 IQ points sitting on the table!?
Well... 30 plus or minus
To help diagnose if you have an unbalanced gut microbiome you can do a simple stool test that will show you what bacteria species you have and in what numbers relative to general population. The one I used is biomesight.
The association between autism and gut has been studied.
There are species of Clostridium (including C. difficile) that produce a nasty metabolite called p-Cresol which messes up dopamine to norepinephrine conversion - both are important neurotransmitters. This is because our body creates dopamine from an amino acid tyrosine and the Clostridium bacteria also eat tyrosine and turn it into p-Cresol. Both dopamine and p-Cresol look the same to the enzyme DBH which converts dopamine to norepinephrine so DBH latches on to p-Cresol and then it gets stuck because it cannot do the next step. The enzyme becomes inhibited forever. This makes your body have too much dopamine accumulated and not enough norepinephrine.
Search for "ASD DBH cresol" to find plenty of research papers.
This is so interesting. I remember several people in my extended network talking about non-woo-woo reasons for why they thought there was a connection between their guts and their autism symptoms, or how it showed up in their kids. That was over two decades ago.
Their experiences seemed valid, it was just a matter of figuring out the why of the matter. Not easy without access to medicial equipment and opportunities to conduct studies.
Seeing that it has moved forward by quite a lot, including finding real and tangible connections between experiences and hard data is great! Thank you so much for sharing this! Off I go to read more about this!