Because of how experimental this is, I was going to wait to post anything until I had basically figured this out completely and was at least as well as I'd been after my OpenBiome FMT in 2015. However, I'm close enough to there to have decent information to provide, and all the time I withhold information is time that others are losing who might be able to use my learned experience to move forward (and possibly also further refine the protocol beyond what I've discovered). So I think it's most ethical to say something now with the caveat that this is evolving, I can always add more later.
Also, in case this doesn't fit in this section because it's not actually a FMT, you are welcome to recommend a different place. To be clear, I never collected any stool from any of the four donors I'm about to describe.
Conditions being treated: the same as I've always had since I started posting here, with the exception of gut pain which was resolved unless I ate something that specifically triggered it. In other words, food sensitivities, near-constant visible bloating (enlarged tummy), irritability, difficulty with focus/executive function, anxiety, disconnection from reality at times as though I were in a dream. I'm also on the autism spectrum and have remaining symptoms, mostly peripheral nerve numbness, from treatment of Lyme disease (plus lots of gut damage from the antibiotics, which is how I got here).
General protocol:
1. The donor collects saliva in a clean sealable collection cup, of the type that you use when giving urine samples at a lab. He/she should have enough of a break since eating that his/her mouth is relatively clean, however harsh washing with, e.g. alcohol-based or other disinfecting mouthwash is NOT a good idea as it obviously kills microbes. The cup only needs to be about 1/8-1/4 full, i.e. 10-20 ml.
2. If there is a significant time delay (more than, say, 1/2 hour) from collection to when the recipient is ready to use the sample, it can be kept in a cooler, e.g. on the drive home picking it up from the donor. To tell you the truth I have no idea how important this is if at all, in fact I only needed to do this once, with donor #1, all the other donors donated at my home.
3. Testing was initially like regular FMT but without any of the stool tests. However, for later donors I didn't even do lab testing, either because the donors were close family members whose health history I could trust, or for #4 because I'd read by then that transmission of, e.g. hepatitis, HIV, etc. through saliva is very unlikely without a cut in the mouth. The one thing that's serious and MORE of a risk with saliva than stool, i.e. meningococcal meningitis, doesn't have a test that you can just walk into a lab and do unless you have active symptoms and are in a hospital.
4. Saliva, with or without added glycerol (see below), is added with an oral medication syringe to acid-resistant capsules (I used these (https://www.amazon.com/XPRS-Nutra-Size-Empty-Capsules/dp/B0D1W4BYQR/) that are placed inside a second larger, regular gelatin capsule. The intent is to get the bacteria through the stomach acid before they open. I also applied some directly with the syringe to my gums and under the tongue.
5. When adding glycerol, my process (again, a complete educated guess) was to add glycerol in a 1:8 ratio or slightly less with saliva, let sit 30-45 minutes with plenty of oxygen to allow microbes to oxidize glycerol if they are able to do so, then encapsulate and use.
Donor 1: A mid-20s Asian male living in a major city. Met him on Discord so he's quite possibly somewhat of a gamer. No diseases run in his family except for a rather innocuous genetic condition of known cause that he didn't inherit. Exercises once a week, drinks alcohol at most once a week (usually less). No risky behaviors. He contacted me because I was looking for someone calm and he claimed to be almost excessively calm and easygoing. He was already planning to become a blood donor so testing was no problem for him to get done. When I met him for the donation, he looked like the typical young slightly geeky guy, neither over- nor underweight, and was very down to earth and unemotional.
He collected at his place and then I drove to pick it up, keeping it in a cooler on the way home. This one I did NOT add glycerol (or anything else) to, and used it immediately upon getting home.
The only effect I noticed the day of use was that I was more tired than normal, and I wasn't sure it was going to do anything. However, upon waking up the next morning I noticed a definitive feeling that I hadn't had from any of the FMT donors since the one from OpenBiome in the hospital--the only way I can describe it is like my torso felt "sturdy and full" as though a firm hand were resting on my back but from inside. However, I didn't have the pervasive feeling of my system being “cleared out” that I did the day after the OpenBiome treatment.
Over the next month or so, I became somewhat less irritable and more stable in terms of mood. I'd also started trying to transition from fully gluten-free back onto some gluten shortly before this treatment, as gluten-free bread in particular was taking its toll on my body in its own ways, but the treatment from Donor 1 got rid of any lingering gluten issues such that I could complete this fully, even tolerating things like pasta nearly without limit. I've been fully on gluten ever since. My sleep wasn't more plentiful or better per se, but the medication that I sometimes take to help me fall (back) asleep became VERY potent, such that tiny doses less than half of what I needed before Donor 1really knocked me out.
The only negative effect was an altered taste in my mouth that I picked up from the donor and that didn't improve until I used other donors. In fact, it's only really been mostly gone since donor #4. Not actually harmful in any way but unnatural for me, so I didn't like it. It was a sort of "bleachy" taste, see below for more on this.
By around Thanksgiving last year I'd basically plateaued and started looking for new donors. When I was looking for the first one, my parents had both said that they would be willing. I hadn't planned to use them because of their advanced age, but figured I should rule them out from actual experience in case they could help, knowing that if anything really bad happened I could repeat with Donor 1.
Donor 2: My mother, a woman in her 70s. Has had mental health issues including depression, anxiety and insomnia in adolescence and young adulthood, but treated them and they have largely been resolved for decades. Lives very healthy, never drinks alcohol or eats junk food, goes for daily walks, if anything slightly underweight.
For my first treatment, I again did not add anything to the sample. This time, even the day of the treatment my bloating got worse and some gut pain came back, and I reacted to more foods again. I also had quite severe diarrhea the next day. Up to and including this donor, ALL three known female donors (i.e. not counting the Open Biome donor, whose sex is unknown), caused this initial diarrhea, regardless of whether stool or saliva was used, and regardless of the source (i.e. business ordered from),whereas NEITHER of the two male donors did. Donor #4 finally broke this pattern, see below. Medication sensitivity was somewhat of the way back to pre-Donor 1.
Despite the GI worsening, starting around the 3rd day or so I noticed a very significant mood-lifting effect, where I almost felt giddy and giggly, and even if I was disappointed in something I didn't feel enraged the way I would have before. However, by a week or so in, both the negative and positive effects had mostly worn off.
I retried it once with the same donor, adding glycerol, with the theory that possibly glycerol had some role in FMTs beyond just protection from freezing. This definitely made it more calming and reduced the GI aggravation considerably, but didn't make it exceed Donor 1 in effectiveness.
Donor 3: My father, a man also in his 70s. Always exercised very regularly, lives healthy, no alcohol consumption, minimal junk food. Did have some GI surgery about 6 years ago that required some quite heavy antibiotic pretreatment. Otherwise has a history of kidney stones.
After using this donor, my gut symptoms once again got worse, and most importantly my mood took a turn for the dark and pessimistic. I immediately knew that this donor was a bad match, and that if I didn't find a fourth donor soon I'd reuse Donor 1. As it turned out, I found Donor 4 before I had a chance to meet with Donor 1 again.
I'm not surprised that donors 2 and 3 didn't help much, I was basically expecting that (in fact, I was pleasantly surprised at the temporary positive mood effects that 2 did have). The purpose of even trying them was more to justify to myself and others that I really needed young, healthy donors, that I wasn't just being picky for no good reason, than it was hope that they would actually work better than Donor 1.
Donor 4: A female recent college graduate who my dad had tutored when she was still a schoolkid. She was very friendly, and had no history of illness, but wasn't really someone I would “pick out of a lineup” as Michael says, i.e. not the sort of person whose entire gestalt screams “healthy” just by merely looking at her in the way of some of the joggers/hikers I pass regularly when out walking on the trails.
She was very on top of things and businesslike though when it came time to donate, arriving at my place at the time she said she would almost to the minute, had me hand her the collection cup and went right to work, collecting a sample in less than half the time it took the other donors (though that last bit is mostly just a bodily function thing). Then she handed over the cup and went right about her day without missing a beat. Even though she was closer to college and likely younger than Donor 1, Donor 1 gave much more of a “college student vibe” than she did.
I mention the above not as advertisement because she has any intention to do this as a business, but because of what it might say about the health of her microbiome. One of the main issues I've had since my gut being out of whack has been an extreme difficulty getting almost anything done, even things I was interested in and very much wanted to accomplish, when they were detail-oriented, tedious, and/or long and multi-step. My mind has felt like it was floating unmoored in space, to where I couldn't direct its focus by conscious force of will, and it got to the point where the mere idea of having to get anything done, with any pressure, brought up a deep almost existential dread. The fact that she was so on top of things and so engaged in the here and now could speak to having a microbiome that is healthy by certain key measures.
I actually divided Donor 4's sample up, adding glycerol to a little more than half and leaving the rest as is, to try and cover as many bases as possible.
The day of using, I already noticed a steady, even and rejuvenated energy. Not stimulation or jitters (except a little shortly after taking it), but sustainable, enduring capacity to expend effort, without an urge to be hyperactive or overdo myself. In the following days, I felt considerably more “normal” than I had for many years, quietly optimistic yet realistic rather than grandiose. I never got quite the same feeling of secure sturdiness as from Donor 1 though. Unlike all three other female donors, there was no transient diarrhea with this one. For the first time, I felt as though I could have used several treatments of this donor in a row—despite being as much volume as any other donor has provided, it felt a tad underdosed—however despite that it certainly seems to have “stuck”/”taken”.
This past week, I passed through the time frame where, with my OpenBiome FMT, I experienced the second wave of dramatic improvement. The rate of changes indeed did pick up, like I felt mild flulike chills certain days and increased intestinal gurgling, but not the sudden release of most of my remaining symptoms like at the similar timepoint after OpenBiome. Rather, I've alternated between days where I've felt 70% back to normal as though I'm about to “break through”, and others where things go backward.
The biggest change in the past week seems to be in my mental focus, I can spend much more time on tasks without my brain feeling drained, and it's significantly faster to pull my focus back after getting distracted. It also seems by eye as though my bloated tummy is starting to shrink, but I haven't gotten into the habit of measuring it yet.
This experience is close enough to what happened with OpenBiome that I think there's a good chance that most if not all of the remaining difference has to do with the fact that before OpenBiome I'd been on years of antibiotics for Lyme, and then several months of vancomycin on top of it. This made my gut such a microbial vacuum that there was an enormous change in stool consistency, bowel habits, and general feel from one day to the next after receiving the transplant. Whereas, this one (as well as DF7 and UT-AW) is having to fight a lot more with my already established microbiome.
In fact, I'd say that it's almost certain that the lack of antibiotic pretreatment has something to do with why none of the other transplants, whether FMT or oral, have had as dramatic of an effect within the first 24-48 hours. The open question is whether the effects of Donor 4 are just delayed but will ultimately end up in the same place, or if I've plateaued.
The big picture/takeaways: Donor 4 was overall the most helpful, although there seem to be things that Donor 1 did that Donor 4 didn't. Adding glycerol possibly helps, and certainly doesn't hurt, despite none of these samples ever being frozen. To the extent it does, the optimal amount seems to be around 10:1 saliva to glycerol by volume.
The donor who got me the farthest, Donor 4, had by far the least amount of “pungent fishy/bleachy” smell to the sample when sitting in the container. This smell seems to be present in all saliva and increases the longer it sits, although for example in the case of my own it needs to sit for quite a while to get any of it, starting out instead with a sort of sour-apple tang. This odor type correlation might be an analogous thing to the stool type correlation that Michael noticed with FMT. However Donor 1, who had by far the most of this odor (enough to give me a taste in the mouth for months after),was the second best of the four, and also keep in mind that Donor 1's sample sat by far the longest, while Donor 4 was prolific enough that her sample was freshest and probably most dilute, so you may want to take that with a grain of salt.
To compare to FMTs, both Donor1 and Donor 4 were more helpful than any of the FMT donors I've tried since OpenBiome (Human Microbes UT-AW-1998 and Gezonde Darmflora DF3 and DF7). Even the worst of the oral donors, Donor 3, was not even really close to as bad as the worst of the FMT donors (DF3 from Gezonde Darmflora), though worse than DF7 and UT-AW. The OpenBiome stool donor is still the best, although Donor 4 is close enough to that to make me think the remaining difference may be entirely the lack of antibiotic pretreatment, not the transplant itself.
So my judgment is that oral donation is much harder to get really wrong than FMT, and a significantly greater fraction of donors pass the bar to provide any given level of improvement.
Also, in case this doesn't fit in this section because it's not actually a FMT, you are welcome to recommend a different place. To be clear, I never collected any stool from any of the four donors I'm about to describe.
Conditions being treated: the same as I've always had since I started posting here, with the exception of gut pain which was resolved unless I ate something that specifically triggered it. In other words, food sensitivities, near-constant visible bloating (enlarged tummy), irritability, difficulty with focus/executive function, anxiety, disconnection from reality at times as though I were in a dream. I'm also on the autism spectrum and have remaining symptoms, mostly peripheral nerve numbness, from treatment of Lyme disease (plus lots of gut damage from the antibiotics, which is how I got here).
General protocol:
1. The donor collects saliva in a clean sealable collection cup, of the type that you use when giving urine samples at a lab. He/she should have enough of a break since eating that his/her mouth is relatively clean, however harsh washing with, e.g. alcohol-based or other disinfecting mouthwash is NOT a good idea as it obviously kills microbes. The cup only needs to be about 1/8-1/4 full, i.e. 10-20 ml.
2. If there is a significant time delay (more than, say, 1/2 hour) from collection to when the recipient is ready to use the sample, it can be kept in a cooler, e.g. on the drive home picking it up from the donor. To tell you the truth I have no idea how important this is if at all, in fact I only needed to do this once, with donor #1, all the other donors donated at my home.
3. Testing was initially like regular FMT but without any of the stool tests. However, for later donors I didn't even do lab testing, either because the donors were close family members whose health history I could trust, or for #4 because I'd read by then that transmission of, e.g. hepatitis, HIV, etc. through saliva is very unlikely without a cut in the mouth. The one thing that's serious and MORE of a risk with saliva than stool, i.e. meningococcal meningitis, doesn't have a test that you can just walk into a lab and do unless you have active symptoms and are in a hospital.
4. Saliva, with or without added glycerol (see below), is added with an oral medication syringe to acid-resistant capsules (I used these (https://www.amazon.com/XPRS-Nutra-Size-Empty-Capsules/dp/B0D1W4BYQR/) that are placed inside a second larger, regular gelatin capsule. The intent is to get the bacteria through the stomach acid before they open. I also applied some directly with the syringe to my gums and under the tongue.
5. When adding glycerol, my process (again, a complete educated guess) was to add glycerol in a 1:8 ratio or slightly less with saliva, let sit 30-45 minutes with plenty of oxygen to allow microbes to oxidize glycerol if they are able to do so, then encapsulate and use.
Donor 1: A mid-20s Asian male living in a major city. Met him on Discord so he's quite possibly somewhat of a gamer. No diseases run in his family except for a rather innocuous genetic condition of known cause that he didn't inherit. Exercises once a week, drinks alcohol at most once a week (usually less). No risky behaviors. He contacted me because I was looking for someone calm and he claimed to be almost excessively calm and easygoing. He was already planning to become a blood donor so testing was no problem for him to get done. When I met him for the donation, he looked like the typical young slightly geeky guy, neither over- nor underweight, and was very down to earth and unemotional.
He collected at his place and then I drove to pick it up, keeping it in a cooler on the way home. This one I did NOT add glycerol (or anything else) to, and used it immediately upon getting home.
The only effect I noticed the day of use was that I was more tired than normal, and I wasn't sure it was going to do anything. However, upon waking up the next morning I noticed a definitive feeling that I hadn't had from any of the FMT donors since the one from OpenBiome in the hospital--the only way I can describe it is like my torso felt "sturdy and full" as though a firm hand were resting on my back but from inside. However, I didn't have the pervasive feeling of my system being “cleared out” that I did the day after the OpenBiome treatment.
Over the next month or so, I became somewhat less irritable and more stable in terms of mood. I'd also started trying to transition from fully gluten-free back onto some gluten shortly before this treatment, as gluten-free bread in particular was taking its toll on my body in its own ways, but the treatment from Donor 1 got rid of any lingering gluten issues such that I could complete this fully, even tolerating things like pasta nearly without limit. I've been fully on gluten ever since. My sleep wasn't more plentiful or better per se, but the medication that I sometimes take to help me fall (back) asleep became VERY potent, such that tiny doses less than half of what I needed before Donor 1really knocked me out.
The only negative effect was an altered taste in my mouth that I picked up from the donor and that didn't improve until I used other donors. In fact, it's only really been mostly gone since donor #4. Not actually harmful in any way but unnatural for me, so I didn't like it. It was a sort of "bleachy" taste, see below for more on this.
By around Thanksgiving last year I'd basically plateaued and started looking for new donors. When I was looking for the first one, my parents had both said that they would be willing. I hadn't planned to use them because of their advanced age, but figured I should rule them out from actual experience in case they could help, knowing that if anything really bad happened I could repeat with Donor 1.
Donor 2: My mother, a woman in her 70s. Has had mental health issues including depression, anxiety and insomnia in adolescence and young adulthood, but treated them and they have largely been resolved for decades. Lives very healthy, never drinks alcohol or eats junk food, goes for daily walks, if anything slightly underweight.
For my first treatment, I again did not add anything to the sample. This time, even the day of the treatment my bloating got worse and some gut pain came back, and I reacted to more foods again. I also had quite severe diarrhea the next day. Up to and including this donor, ALL three known female donors (i.e. not counting the Open Biome donor, whose sex is unknown), caused this initial diarrhea, regardless of whether stool or saliva was used, and regardless of the source (i.e. business ordered from),whereas NEITHER of the two male donors did. Donor #4 finally broke this pattern, see below. Medication sensitivity was somewhat of the way back to pre-Donor 1.
Despite the GI worsening, starting around the 3rd day or so I noticed a very significant mood-lifting effect, where I almost felt giddy and giggly, and even if I was disappointed in something I didn't feel enraged the way I would have before. However, by a week or so in, both the negative and positive effects had mostly worn off.
I retried it once with the same donor, adding glycerol, with the theory that possibly glycerol had some role in FMTs beyond just protection from freezing. This definitely made it more calming and reduced the GI aggravation considerably, but didn't make it exceed Donor 1 in effectiveness.
Donor 3: My father, a man also in his 70s. Always exercised very regularly, lives healthy, no alcohol consumption, minimal junk food. Did have some GI surgery about 6 years ago that required some quite heavy antibiotic pretreatment. Otherwise has a history of kidney stones.
After using this donor, my gut symptoms once again got worse, and most importantly my mood took a turn for the dark and pessimistic. I immediately knew that this donor was a bad match, and that if I didn't find a fourth donor soon I'd reuse Donor 1. As it turned out, I found Donor 4 before I had a chance to meet with Donor 1 again.
I'm not surprised that donors 2 and 3 didn't help much, I was basically expecting that (in fact, I was pleasantly surprised at the temporary positive mood effects that 2 did have). The purpose of even trying them was more to justify to myself and others that I really needed young, healthy donors, that I wasn't just being picky for no good reason, than it was hope that they would actually work better than Donor 1.
Donor 4: A female recent college graduate who my dad had tutored when she was still a schoolkid. She was very friendly, and had no history of illness, but wasn't really someone I would “pick out of a lineup” as Michael says, i.e. not the sort of person whose entire gestalt screams “healthy” just by merely looking at her in the way of some of the joggers/hikers I pass regularly when out walking on the trails.
She was very on top of things and businesslike though when it came time to donate, arriving at my place at the time she said she would almost to the minute, had me hand her the collection cup and went right to work, collecting a sample in less than half the time it took the other donors (though that last bit is mostly just a bodily function thing). Then she handed over the cup and went right about her day without missing a beat. Even though she was closer to college and likely younger than Donor 1, Donor 1 gave much more of a “college student vibe” than she did.
I mention the above not as advertisement because she has any intention to do this as a business, but because of what it might say about the health of her microbiome. One of the main issues I've had since my gut being out of whack has been an extreme difficulty getting almost anything done, even things I was interested in and very much wanted to accomplish, when they were detail-oriented, tedious, and/or long and multi-step. My mind has felt like it was floating unmoored in space, to where I couldn't direct its focus by conscious force of will, and it got to the point where the mere idea of having to get anything done, with any pressure, brought up a deep almost existential dread. The fact that she was so on top of things and so engaged in the here and now could speak to having a microbiome that is healthy by certain key measures.
I actually divided Donor 4's sample up, adding glycerol to a little more than half and leaving the rest as is, to try and cover as many bases as possible.
The day of using, I already noticed a steady, even and rejuvenated energy. Not stimulation or jitters (except a little shortly after taking it), but sustainable, enduring capacity to expend effort, without an urge to be hyperactive or overdo myself. In the following days, I felt considerably more “normal” than I had for many years, quietly optimistic yet realistic rather than grandiose. I never got quite the same feeling of secure sturdiness as from Donor 1 though. Unlike all three other female donors, there was no transient diarrhea with this one. For the first time, I felt as though I could have used several treatments of this donor in a row—despite being as much volume as any other donor has provided, it felt a tad underdosed—however despite that it certainly seems to have “stuck”/”taken”.
This past week, I passed through the time frame where, with my OpenBiome FMT, I experienced the second wave of dramatic improvement. The rate of changes indeed did pick up, like I felt mild flulike chills certain days and increased intestinal gurgling, but not the sudden release of most of my remaining symptoms like at the similar timepoint after OpenBiome. Rather, I've alternated between days where I've felt 70% back to normal as though I'm about to “break through”, and others where things go backward.
The biggest change in the past week seems to be in my mental focus, I can spend much more time on tasks without my brain feeling drained, and it's significantly faster to pull my focus back after getting distracted. It also seems by eye as though my bloated tummy is starting to shrink, but I haven't gotten into the habit of measuring it yet.
This experience is close enough to what happened with OpenBiome that I think there's a good chance that most if not all of the remaining difference has to do with the fact that before OpenBiome I'd been on years of antibiotics for Lyme, and then several months of vancomycin on top of it. This made my gut such a microbial vacuum that there was an enormous change in stool consistency, bowel habits, and general feel from one day to the next after receiving the transplant. Whereas, this one (as well as DF7 and UT-AW) is having to fight a lot more with my already established microbiome.
In fact, I'd say that it's almost certain that the lack of antibiotic pretreatment has something to do with why none of the other transplants, whether FMT or oral, have had as dramatic of an effect within the first 24-48 hours. The open question is whether the effects of Donor 4 are just delayed but will ultimately end up in the same place, or if I've plateaued.
The big picture/takeaways: Donor 4 was overall the most helpful, although there seem to be things that Donor 1 did that Donor 4 didn't. Adding glycerol possibly helps, and certainly doesn't hurt, despite none of these samples ever being frozen. To the extent it does, the optimal amount seems to be around 10:1 saliva to glycerol by volume.
The donor who got me the farthest, Donor 4, had by far the least amount of “pungent fishy/bleachy” smell to the sample when sitting in the container. This smell seems to be present in all saliva and increases the longer it sits, although for example in the case of my own it needs to sit for quite a while to get any of it, starting out instead with a sort of sour-apple tang. This odor type correlation might be an analogous thing to the stool type correlation that Michael noticed with FMT. However Donor 1, who had by far the most of this odor (enough to give me a taste in the mouth for months after),was the second best of the four, and also keep in mind that Donor 1's sample sat by far the longest, while Donor 4 was prolific enough that her sample was freshest and probably most dilute, so you may want to take that with a grain of salt.
To compare to FMTs, both Donor1 and Donor 4 were more helpful than any of the FMT donors I've tried since OpenBiome (Human Microbes UT-AW-1998 and Gezonde Darmflora DF3 and DF7). Even the worst of the oral donors, Donor 3, was not even really close to as bad as the worst of the FMT donors (DF3 from Gezonde Darmflora), though worse than DF7 and UT-AW. The OpenBiome stool donor is still the best, although Donor 4 is close enough to that to make me think the remaining difference may be entirely the lack of antibiotic pretreatment, not the transplant itself.
So my judgment is that oral donation is much harder to get really wrong than FMT, and a significantly greater fraction of donors pass the bar to provide any given level of improvement.
- Included required info?
- Yes
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