Human Microbes HumanMicrobes.org, Donor IA_SMJ_2010. Mild improvements for IBS and fat intolerance. Testing vacuum sealing and "stool type vs breastfeeding". Comments for regulators. (2023)

HumanMicrobes.org

Michael Harrop

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395
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Have done FMTs from 12 different donors prior to this one https://forum.humanmicrobiome.info/threads/my-detailed-experiences-lessons-from-13-different-fmt-donors-jun-2018.53/

Last one was from HumanMicrobes.org, Donor NY_BuddingBear_1994. https://forum.humanmicrobiome.info/threads/humanmicrobes-org-donor-ny_buddingbear_1994-no-benefits-worsened-cfs-i.123/

HumanMicrobes.org results tracking: https://docs.google.com/spreadsheets/d/1E9TFLqh9I2ZZhDSvGljyhukU-71fFMmJ/edit#gid=814307337



Prior to FMT:​

BuddingBear made everything worse. I'm fatigued in bed for 2 hours after meals, and I'm getting headaches which is new.

  • Weight down from 180lbs to 170lbs.
  • Chronic sinus stuffiness, sleep very poor and restless.
  • Sex drive still very poor. Probably due to overall poor circulation, which is probably playing a role in other symptoms such as low brain function.

Diet:​

Before: Fruit, malt o meal, white sweet potatoes, honey, basmati white rice, leafy greens, cauliflower, butter, spices.
After: Added brazil nuts, walnuts, peanuts.

Supplements & meds:​

Before: Imodium 3x/day, creatine, 5k vit d, 65mg iron (ferrous sulfate) 2x/day, 25mg zinc. Cholestyramine (BAS).
After: Removed Cholestyramine (BAS). Decreased iron to one every 1-2 days.


Summary:​

This was a really interesting donor, and I'd probably continue to improve if I kept using them, but I've been prioritizing discovery/testing hypotheses over my own recovery, and will continue to do so for now. I'm quite curious to see what results other people get from this donor.

Overall, for me they are not as good as FL-RS-1997.

I confirmed various aspects of my stool type hypothesis, and learned some new things.

For FMT, stool type is more important than breastfeeding. But that's not to say that breastfeeding is unimportant. For example, this kid's stools are fairly unstable and susceptible to perturbation. The lack of breastfeeding may play a role in that.

This kid is around lots of dogs and it's certainly had an impact on his gut microbiome.

Vacuum sealing and other procedural details like freeze-thaw cycles, saline vs filtered water, fresh vs frozen, all seem to be vastly less impactful than donor/stool quality.

Benefits:​

Mild improvements to IBS and fat intolerance. Possibly increased intolerance to prebiotics.

All symptoms significantly improved the first day. Headaches gone, not fatigued in bed for 2 hours after meal, gas dramatically decreased. But, just like the donor's stools, it wasn't stable. As usual, I've advised the donor about stool selection for the future.

The good stools smelled very mild, like mucus, and made me smell (farts & body odor) similarly. There was a period during the "changing of the guard" where it was extremely strong and overpowering, but after that it became mild and pleasant. Including a pleasant, mild, mucus taste in my mouth, and feeling in the colon.

Seemed to lower my "issues" from head to heart pounding: In the past, my issues started off with heart pounding (along with sensitivity to prebiotics, which seemed to be too stimulative), then it switched/worsened/moved up to cognitive deficits. This donor seemed to reverse that to some degree. It doesn't feel like it's just a change of location, but rather it feels like the problem is being stopped before reaching my head.

In the end, I was not able to find a balanced state. The window to achieve balance is too narrow.


Other comments and ommissions:​

There was someone trolling on another forum, reaching for any opportunity to attack me. At first, they insinuated that something was dangerous about my donors, yet they're a fan of DIY themselves so they realized that wouldn't work. They then resorted to saying the issue was that zip-lock bags don't provide adequate protection from oxygen exposure, and thus it won't be effective. Next, they admitted that it doesn't matter once the stool is frozen.

Either way, you can simply look at Human Microbes' results to see plenty of people improving. But also, one recipient had already been experimenting with vacuum-sealed bags and stuck with regular zip locks in the end. Also, our process is nearly the same as the one used by El-Salhy's super-donor study. This donor was an easy opportunity for me to test it as well, so I did.

I guess it bodes well for me that despite there being numerous people who seem very desperate to attack me, they're unable to find any legitimate flaws. Still, it's quite annoying to be constantly bombarded with false attacks when the attackers get significant support instead of being downvoted and told off.

I'm omitting a lot from this report for various reasons. I'm preparing a list with various findings, and I'll include the omissions in there. For some of them, I think it's a bad idea to share them publicly, but I'm willing to share them privately with regulatory agencies. Possibly also with specific research groups & companies.


To regulators:​

I think FMT will be very hard to regulate. It's very complex. It really depends a lot on the integrity, intelligence, knowledge, and motivations of the people running the company. I'm not sure that you can make FMT "guaranteed safe". The best you could do is allow patients to make informed decisions. I think much of the "good safety record of FMT" is likely due to poor/lack of tracking of longer-term outcomes. Antibiotic studies have the same issue. Antibiotics are definitely not as safe as they're considered to be. Companies and clinical trials are both getting away with "well we did the bare minimum pathogen testing so our donor was safe".

Even if I shared the answer key with every stool provider there's no guarantee or even strong incentive for them to use it. So my advice to regulators would be to mandate the public tracking & reporting of results like we do on our website. With the ability for patients to provide long-term updates at will. And dole out company-killing fines for not doing so. This will provide some incentive for providers to care about, and try to avoid, poor patient outcomes. As is, it's largely a black box besides some random reports on social media. A large percentage of people can and do get worse and it has nearly no impact on the company because few future-customers/patients find out about it.

It is safe to assume that any provider that is not publicly tracking & reporting results has a large percentage of patients getting worse and developing new problems.
 
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