First I will give a brief overview of where I was health-wise both prior to this FMT, and very briefly where I was prior to my OpenBiome FMT in 2015, with which this experience will be compared (since it's my only other FMT, hence my only reference point as to how successful this one was). You can read the full experience of that other FMT here: https://forum.humanmicrobiome.info/threads/temporary-success-with-openbiome-in-2015-for-post-lyme-and-neuropsychi.358/
So before that PRIOR FMT I'd gone through a period of severe anxiety (to the point I'd feel restlessly on edge to the point of not being able to concentrate just sitting in my room, without anything happening to cause it) and at the beginning, severe insomnia as well. I'd gotten these a bit under control with other treatments/eliminating foods but still was far from normal. I'd also had diarrhea for many years, which had gotten way worse temporarily with my first bout of C. diff, but was back to the old (ab)normal by my 3rd recurrence, which was when I got the FMT. The diarrhea was the only physical symptom, everything else was brain-related.
Before this latest FMT, I'd developed a strange back pain, like a "tearing, stretching sensation" in the middle of my back on one side of the spine. Not IN the spine, in my GI tract somewhere, but toward the back. This evolved out of a sensation of over-fullness that I'd feel after eating/drinking certain things, particularly alcoholic beverages, pork, and sometimes lettuce. It was like my gut was swelling up and I'd feel as though my head was swelling up with pressure too—not exactly a “headache” because it wasn't pain, but pressure. Sometime in early 2020 it progressed from fullness to outright pain, and eventually this started occurring after almost every meal where I ate a decent amount of meat protein. An upper endoscopy revealed no ulcers or damage to the gut lining that could account for this—it's possible it's from gas trapped high up in the small intestine but that's just a guess. Certainly not gas low enough to cause abdominal cramping, much less “fart it out”. I'd managed to minimize this pain by dietary habits, so it was no longer a constant thing but it always was close by.
During the time that this was developing, I also gradually developed a tendency toward mental state alterations after eating that are somewhat along the lines of what Michael mentioned having after trying Donor #5. It's a state you could call “brain fog” that has at times approached derealization, where I felt less than fully present in reality. Not just like daydreaming, where you are distant from the surroundings yet your inner world is still clear, but where even inner thoughts became as in a dream—a hazy stream of detached visions and ideas that eluded my grasp whenever trying to impose order on them. So it's been very difficult to accomplish anything complex cognitively, not because of difficulty in comprehension, or laziness to think, but from difficulty keeping ideas organized. Executive function was never my strong suit but this has been an all time low. My mood in this state was a mixture of irritable agitated-depressed, almost “strung out”, and anxious with a sense of doom, like I'd wandered into a bad parallel dimension.
Over the period I was developing all this, I was taking 5-HTP, and also drinking a decent amount of beer. I eventually discovered that both of these were contributing significantly, but even avoiding 5-HTP and alcohol entirely wasn't near enough to reverse the downturn. But consuming any of either again would flare symptoms. In particular, aside from causing that pain to get very bad, I wouldn't get any sort of calming or “buzz” from alcohol, it would have if anything a paradoxical awakening effect instead (a dysphoric, anxious type awakening). In another report on here, someone mentioned the possibility that this combination of back pain and altered mental state is due to Klebsiella. I don't know where he/she got that idea, but it would make sense here in that some strains of Klebsiella produce a lot of ethanol—so might already overload and desensitize the body to it.
In addition to alcoholic beverages, I have become intolerant to the above-mentioned pork and eventually gluten, eggs, sole, and many legumes, with more minor sensitivity to corn and some nuts as well. Unlike before the 2015 FMT, I have NOT been significantly intolerant to cruciferous vegetables this time around.
Now we get to the actual UT-AW-1998 FMT. After the first capsule, which I took on an empty stomach in the late morning, I had significant diarrhea in the evening after dinner, followed by a night of insomnia without the anxiety that usually causes it. The insomnia was resolved by the next night, but the diarrhea lasted for 36-48 hours. I held off taking any more capsules until this resolved. Four days after the first capsule, I took two more, and had no flare of insomnia or diarrhea despite taking twice as much. These side effects never returned.
My mood was significantly more positive, starting somewhat even on the first day, but reaching maximum improvement and plateauing by the end of the first two weeks, over which I was taking 1-2 capsules roughly every other day, except for that 3-day break at the beginning. However, I wasn't healed like after the OpenBiome FMT.
The OpenBiome FMT was notable at the beginning NOT for what it ADDED, but for what it TOOK AWAY. The diarrhea was gone as though a magic wand had been waved, and mentally, the state was of sudden clarity, overwhelming sobriety if you will. This was even noticeable the first day, despite the fact that I'd been put to sleep for the endoscopy and the sedatives weren't fully out of my system, but became especially clear the following day. It was like waking up the first day of vacation in a mountain cabin, where all the noise and bustle of prior life is long gone, leaving a sort of emptiness, though not an uncomfortable one, from which it is possible to coolly focus on what matters and avoid the noise. This is what I'm looking for FMT to do—no type of mental health meds or supplements can do this, at least not without causing drowsiness or low mood, at least as far as I know.
It wasn't that the former issues never reared their head in the subsequent few weeks, but did so only temporarily, and any re-emergence was clearly identifiable as such. A little over a month in, after my system had experienced a respite from the constant flares, my body started to pick up momentum and start rebuilding and I felt my positive attitude and excitement for life starting to come back.
With the UT-AW-1998 FMT, I never had this clarity and sobriety. Instead, as stated above, there was a near-immediate antidepressant-like effect, which has been stable, even now after not having taken any FMT capsules for almost 4 weeks, yet severely limited in actual impact on my life due to the spacey, strung-out and “drunken” state, which was not helped at all by the FMT itself. In mental health treatment parlance you would say it had an “activating effect”, which is again not what I was really looking for. Possibly if one of your main symptoms is classic, unipolar (“sadness type”) depression or severe fatigue you might find this helpful.
It's not a hyper, speedy, high-energy type mood boost like a caffeine buzz or sugar high, but a sunny, warm, passive type of mood elevation like from a SSRI—though with the significant advantage over a SSRI that it does this without aggravating the anxiety and derealization-type symptoms. Though as I said, it hasn't helped them either—so while it doesn't feel nearly as dark in that weird bubble, I'm still just coping much better, nowhere near thriving. At best, I crave eating less so I can avoid triggering it as much just by not feeding the bugs as much.
On the intolerance side, I still don't tolerate gluten, egg, legumes, or alcohol significantly better than I did pre-FMT. If there's one thing I tolerate better, it's fruits and sweet, starchy things like baked goods. So possibly better fructose tolerance, but otherwise not much change. I also have noticed a “warm” sensation in my gut, yet at the same time the sensation of “emptiness” that suggests missing microbes (and was also gone immediately after the OpenBiome FMT) remains.
There's something else I should mention—two days after the 16th capsule (the last one I've taken), I had bad nausea that felt almost like a stomach flu or some type of food poisoning, followed by 24 hours of little appetite. I'd taken that capsule two days after trying some alcohol and feeling worse (though not nauseated), to make sure I replaced any bacteria I might have killed off. So the symptoms were three days after the capsule and 5 days after the alcohol. I'd once had some MUCH milder nausea for only a half hour in the second week when I exercised right after taking two capsules, other than that I never got any, even from other capsules I'd taken less than a week prior to the 16th one. I had not had a stomach bug since 2017, so I'm not prone to this otherwise, hence why I connect to the FMT despite it not happening the same day. However, a colleague did have 24 hours of severe nausea and no appetite about a week after this, so it's possible something was going around.
So in summary:
Positive effects:
--Antidepressant-like mood lift
--Possibly minor improvement in fructose tolerance
--Minor improvement in irritability secondary to better mood, core tendency not improved per se
Negative effects:
--Insomnia flared after first capsule for one night
--Diarrhea, which had not been present for years prior to FMT, re-emerged for 2-3 days, also after 1st capsule
--Bad “stomach bug” type nausea lasting 24 hours occurring 3 days after 16th capsule, that MAY be related to FMT
No or little change:
--Spaciness/derealization/cognitive issues after meals
--Ability to tolerate legumes, alcohol, egg, gluten without gut pain or flaring cognitive issues
All in all, the FMT from this donor was more effective than anything that ISN'T a FMT, but still a far cry from the almost miracle treatment I know FMT CAN be.
As for reasons that this FMT was less successful and significantly “rougher around the edges” than the OpenBiome FMT, I see four main differences:
1) The processing—OpenBiome strains the stool after adding glycerol/saline, while the capsules of UT-AW-1998 had no glycerol or saline and the stool was not filtered.
2) The route of administration and dose—I don't see this as likely a major factor as both FMTs were via the upper route. Furthermore, this FMT was not just quantitatively less powerful all around, it was qualitatively different from the OpenBiome one, causing more side effects with a lower dose, suggesting it wasn't merely a matter of not enough microbes delivered intact.
3) The fact that, due to my C. difficile at the time, I had to take vancomycin leading up to the FMT, and this course was over a month long, as my infection was diagnosed in late January but the earliest I could get FMT was mid-March. This may have made it easier for the FMT to establish itself, however vancomycin alone suppressed none of my symptoms, not even the diarrhea.
4) Last but not least, of course, the donor.
So before that PRIOR FMT I'd gone through a period of severe anxiety (to the point I'd feel restlessly on edge to the point of not being able to concentrate just sitting in my room, without anything happening to cause it) and at the beginning, severe insomnia as well. I'd gotten these a bit under control with other treatments/eliminating foods but still was far from normal. I'd also had diarrhea for many years, which had gotten way worse temporarily with my first bout of C. diff, but was back to the old (ab)normal by my 3rd recurrence, which was when I got the FMT. The diarrhea was the only physical symptom, everything else was brain-related.
Before this latest FMT, I'd developed a strange back pain, like a "tearing, stretching sensation" in the middle of my back on one side of the spine. Not IN the spine, in my GI tract somewhere, but toward the back. This evolved out of a sensation of over-fullness that I'd feel after eating/drinking certain things, particularly alcoholic beverages, pork, and sometimes lettuce. It was like my gut was swelling up and I'd feel as though my head was swelling up with pressure too—not exactly a “headache” because it wasn't pain, but pressure. Sometime in early 2020 it progressed from fullness to outright pain, and eventually this started occurring after almost every meal where I ate a decent amount of meat protein. An upper endoscopy revealed no ulcers or damage to the gut lining that could account for this—it's possible it's from gas trapped high up in the small intestine but that's just a guess. Certainly not gas low enough to cause abdominal cramping, much less “fart it out”. I'd managed to minimize this pain by dietary habits, so it was no longer a constant thing but it always was close by.
During the time that this was developing, I also gradually developed a tendency toward mental state alterations after eating that are somewhat along the lines of what Michael mentioned having after trying Donor #5. It's a state you could call “brain fog” that has at times approached derealization, where I felt less than fully present in reality. Not just like daydreaming, where you are distant from the surroundings yet your inner world is still clear, but where even inner thoughts became as in a dream—a hazy stream of detached visions and ideas that eluded my grasp whenever trying to impose order on them. So it's been very difficult to accomplish anything complex cognitively, not because of difficulty in comprehension, or laziness to think, but from difficulty keeping ideas organized. Executive function was never my strong suit but this has been an all time low. My mood in this state was a mixture of irritable agitated-depressed, almost “strung out”, and anxious with a sense of doom, like I'd wandered into a bad parallel dimension.
Over the period I was developing all this, I was taking 5-HTP, and also drinking a decent amount of beer. I eventually discovered that both of these were contributing significantly, but even avoiding 5-HTP and alcohol entirely wasn't near enough to reverse the downturn. But consuming any of either again would flare symptoms. In particular, aside from causing that pain to get very bad, I wouldn't get any sort of calming or “buzz” from alcohol, it would have if anything a paradoxical awakening effect instead (a dysphoric, anxious type awakening). In another report on here, someone mentioned the possibility that this combination of back pain and altered mental state is due to Klebsiella. I don't know where he/she got that idea, but it would make sense here in that some strains of Klebsiella produce a lot of ethanol—so might already overload and desensitize the body to it.
In addition to alcoholic beverages, I have become intolerant to the above-mentioned pork and eventually gluten, eggs, sole, and many legumes, with more minor sensitivity to corn and some nuts as well. Unlike before the 2015 FMT, I have NOT been significantly intolerant to cruciferous vegetables this time around.
Now we get to the actual UT-AW-1998 FMT. After the first capsule, which I took on an empty stomach in the late morning, I had significant diarrhea in the evening after dinner, followed by a night of insomnia without the anxiety that usually causes it. The insomnia was resolved by the next night, but the diarrhea lasted for 36-48 hours. I held off taking any more capsules until this resolved. Four days after the first capsule, I took two more, and had no flare of insomnia or diarrhea despite taking twice as much. These side effects never returned.
My mood was significantly more positive, starting somewhat even on the first day, but reaching maximum improvement and plateauing by the end of the first two weeks, over which I was taking 1-2 capsules roughly every other day, except for that 3-day break at the beginning. However, I wasn't healed like after the OpenBiome FMT.
The OpenBiome FMT was notable at the beginning NOT for what it ADDED, but for what it TOOK AWAY. The diarrhea was gone as though a magic wand had been waved, and mentally, the state was of sudden clarity, overwhelming sobriety if you will. This was even noticeable the first day, despite the fact that I'd been put to sleep for the endoscopy and the sedatives weren't fully out of my system, but became especially clear the following day. It was like waking up the first day of vacation in a mountain cabin, where all the noise and bustle of prior life is long gone, leaving a sort of emptiness, though not an uncomfortable one, from which it is possible to coolly focus on what matters and avoid the noise. This is what I'm looking for FMT to do—no type of mental health meds or supplements can do this, at least not without causing drowsiness or low mood, at least as far as I know.
It wasn't that the former issues never reared their head in the subsequent few weeks, but did so only temporarily, and any re-emergence was clearly identifiable as such. A little over a month in, after my system had experienced a respite from the constant flares, my body started to pick up momentum and start rebuilding and I felt my positive attitude and excitement for life starting to come back.
With the UT-AW-1998 FMT, I never had this clarity and sobriety. Instead, as stated above, there was a near-immediate antidepressant-like effect, which has been stable, even now after not having taken any FMT capsules for almost 4 weeks, yet severely limited in actual impact on my life due to the spacey, strung-out and “drunken” state, which was not helped at all by the FMT itself. In mental health treatment parlance you would say it had an “activating effect”, which is again not what I was really looking for. Possibly if one of your main symptoms is classic, unipolar (“sadness type”) depression or severe fatigue you might find this helpful.
It's not a hyper, speedy, high-energy type mood boost like a caffeine buzz or sugar high, but a sunny, warm, passive type of mood elevation like from a SSRI—though with the significant advantage over a SSRI that it does this without aggravating the anxiety and derealization-type symptoms. Though as I said, it hasn't helped them either—so while it doesn't feel nearly as dark in that weird bubble, I'm still just coping much better, nowhere near thriving. At best, I crave eating less so I can avoid triggering it as much just by not feeding the bugs as much.
On the intolerance side, I still don't tolerate gluten, egg, legumes, or alcohol significantly better than I did pre-FMT. If there's one thing I tolerate better, it's fruits and sweet, starchy things like baked goods. So possibly better fructose tolerance, but otherwise not much change. I also have noticed a “warm” sensation in my gut, yet at the same time the sensation of “emptiness” that suggests missing microbes (and was also gone immediately after the OpenBiome FMT) remains.
There's something else I should mention—two days after the 16th capsule (the last one I've taken), I had bad nausea that felt almost like a stomach flu or some type of food poisoning, followed by 24 hours of little appetite. I'd taken that capsule two days after trying some alcohol and feeling worse (though not nauseated), to make sure I replaced any bacteria I might have killed off. So the symptoms were three days after the capsule and 5 days after the alcohol. I'd once had some MUCH milder nausea for only a half hour in the second week when I exercised right after taking two capsules, other than that I never got any, even from other capsules I'd taken less than a week prior to the 16th one. I had not had a stomach bug since 2017, so I'm not prone to this otherwise, hence why I connect to the FMT despite it not happening the same day. However, a colleague did have 24 hours of severe nausea and no appetite about a week after this, so it's possible something was going around.
So in summary:
Positive effects:
--Antidepressant-like mood lift
--Possibly minor improvement in fructose tolerance
--Minor improvement in irritability secondary to better mood, core tendency not improved per se
Negative effects:
--Insomnia flared after first capsule for one night
--Diarrhea, which had not been present for years prior to FMT, re-emerged for 2-3 days, also after 1st capsule
--Bad “stomach bug” type nausea lasting 24 hours occurring 3 days after 16th capsule, that MAY be related to FMT
No or little change:
--Spaciness/derealization/cognitive issues after meals
--Ability to tolerate legumes, alcohol, egg, gluten without gut pain or flaring cognitive issues
All in all, the FMT from this donor was more effective than anything that ISN'T a FMT, but still a far cry from the almost miracle treatment I know FMT CAN be.
As for reasons that this FMT was less successful and significantly “rougher around the edges” than the OpenBiome FMT, I see four main differences:
1) The processing—OpenBiome strains the stool after adding glycerol/saline, while the capsules of UT-AW-1998 had no glycerol or saline and the stool was not filtered.
2) The route of administration and dose—I don't see this as likely a major factor as both FMTs were via the upper route. Furthermore, this FMT was not just quantitatively less powerful all around, it was qualitatively different from the OpenBiome one, causing more side effects with a lower dose, suggesting it wasn't merely a matter of not enough microbes delivered intact.
3) The fact that, due to my C. difficile at the time, I had to take vancomycin leading up to the FMT, and this course was over a month long, as my infection was diagnosed in late January but the earliest I could get FMT was mid-March. This may have made it easier for the FMT to establish itself, however vancomycin alone suppressed none of my symptoms, not even the diarrhea.
4) Last but not least, of course, the donor.
- FMT Clinics
- I included all required info
