This is a follow-up to this experience, which I previously promised togive once more time had passed since the FMT.
I'm posting as a separate thread because they may just as well have been different donors/sources, given the difference in effects. Both were only partial successes however.
The glycerol-preserved UT-AW-capsules did NOT cause diarrhea or worsened insomnia, even after the first dose. Also absent was any further immediate antidepressant-like mood lift or "activating" effect. However, the improved mood left over from when I took the non-preserved capsules did NOT get undone--therefore I cannot say that these would not have caused this effect, had I started from the beginning with glycerol-preserved capsules. So, the only things caused by the non-glycerol capsules that were clearly NOT also caused by the glycerol capsules were negative side effects.
Similar to my experience with OpenBiome in 2015(https://forum.humanmicrobiome.info/threads/temporary-success-with-openbiome-in-2015-for-post-lyme-and-neuropsychi.358/), these caused firmed stool bordering on constipation immediately from the first dose onward. Like the OpenBiome FMT, they also caused the effect, alluded to in my experience with NON-glycerol UT-AW-1998 capsules (see the paragraph beginning with "The OpenBiome FMT was notable...") but not actually experienced with them, of stability/"sobriety", in other words a significant decrease in mood swings and reduced tendency to "go off the rails" into acutely disordered functioning--rather any disruption from food, change in sleep schedule, etc. promptly returns to baseline now. Its a feeling sort of like being buckled into a seat in a car after years of floating in mid-air. In these ways, these capsules are MUCH more like the OpenBiome FMT than the ones without glycerol.
On the other hand, this "sobriety" was almost completely emotional/mood related, NOT cognitive. My very poor executive function and "brain fog" were NOT cleared. Here it is difficult to compare reliably with the OpenBiome FMT, as I didn't have the same degree of cognitive dysfunction then, although my anxiety was worse. The depth of the "clearing out" from the OpenBiome FMT felt much more thorough and profound, however. It was also progressive and longer lasting--the "reset" from the glycerol UT-AW-1998 was most noticeable about half a week in, and then as time went on it didn't disappear, but plateaued and was somewhat lost among the fluctuations after then.
Also absent was the sudden delayed improvement of mood a month to six weeks in. I'm now well over two months since the first capsule and over a month since the last one, and while there continues to be if anything gradual improvement, it's VEEEEERY slooooooow. Aside from the effects in the first week, there was no "hump" I ever got over where my situation became qualitatively different from one week to the next. The fact that I haven't had any regression strengthens my confidence that the sudden change in direction a month and a half after the OpenBiome FMT was triggered by a misstep on my part rather than spontaneous, however I have yet to actually get near the level of maximum improvement of that FMT.
Another change is that now problem foods and alcohol are unlikely to cause outright stretching aching pain in my gut like they did before this round of FMTs, but they still cause a distended belly and anxiety flares a day or two after. My gut also doesn't feel like it needs sweet foods to feel normal, I have completely stopped eating them although I had non-dairy ice cream almost daily before these FMTs. I still don't have much “functional energy”, but now I tend to feel simply tired when reaching my limit rather than overwrought and almost “strung out”.
One other thing I should mention—I did report food-poisoning-like symptoms with only the very last capsule of the previous set. I did have some of this again from the beginning with the second set, if I took too many capsules in one day. When I put in this order, the donor was having difficulty obtaining dry ice, so it's possible the capsules were sitting in her freezer for several weeks before being sent, like the first set sat in my own freezer before I first had this side effect. This makes me think it may be in part due to a lack of freshness.
Other people have mentioned this donor's stool imparting a “rubbery” smell to their own stool and/or body—this smell, which could in fact be described as “rubbery”, or alternatively like an air conditioning unit run for the first time in months, newspaper, or mothballs, seemed to be in large part a factor of the capsules being frozen without glycerol. It's still present to some degree even with the glycerol but is balanced out by the other microbes and isn't nearly as noticeable.
So in summary, here are the effects of the three FMTs for comparison.
UT-AW-1998 frozen WITHOUT glycerol:
GI:
--Significant diarrhea after first dose, increased tendency toward diarrhea as long as I was doing the FMTs
--Sulfur gas that has persisted even after over a month of no FMTs of any kind from this donor
--Warm physical sensation in belly/abdomen
Rest of body/brain:
--Worsened insomnia after first dose
--Immediate but rather superficial moodbrightening—a warm, glowing optimistic feeling. Effect was generally “activating” more than calming.
UT-AW-1998 frozen WITH glycerol:
GI:
--Stool hardening to the point of near constipation beginning after first dose, before leveling out on the firm end of average after multiple doses
--Almost complete loss of any craving for sweet foods, gut feels “normal” without them rather than like something is missing
--Much less prone to gut pain
--Gut feels somewhat more “full”
Rest of body/brain:
--Significantly more level mood and feeling “held in place"
--Less likely to go into “paradoxical overdrive” when worn out
OpenBiome:
GI:
--Stool hardening to the point of near constipation in first few days after procedure, before leveling out at firm end of average after 1-2 weeks
--Gut felt pleasantly completely “full” like a “hole” was filled
Rest of body/brain:
--Immediate and rather profound anxiety reduction, energy level much more functional and smooth rather than bouncing between hyper- and hypoactive
--Dramatic jump in mood state about a month after, to where I felt reborn and truly well mentally for the first time in years
I'm posting as a separate thread because they may just as well have been different donors/sources, given the difference in effects. Both were only partial successes however.
The glycerol-preserved UT-AW-capsules did NOT cause diarrhea or worsened insomnia, even after the first dose. Also absent was any further immediate antidepressant-like mood lift or "activating" effect. However, the improved mood left over from when I took the non-preserved capsules did NOT get undone--therefore I cannot say that these would not have caused this effect, had I started from the beginning with glycerol-preserved capsules. So, the only things caused by the non-glycerol capsules that were clearly NOT also caused by the glycerol capsules were negative side effects.
Similar to my experience with OpenBiome in 2015(https://forum.humanmicrobiome.info/threads/temporary-success-with-openbiome-in-2015-for-post-lyme-and-neuropsychi.358/), these caused firmed stool bordering on constipation immediately from the first dose onward. Like the OpenBiome FMT, they also caused the effect, alluded to in my experience with NON-glycerol UT-AW-1998 capsules (see the paragraph beginning with "The OpenBiome FMT was notable...") but not actually experienced with them, of stability/"sobriety", in other words a significant decrease in mood swings and reduced tendency to "go off the rails" into acutely disordered functioning--rather any disruption from food, change in sleep schedule, etc. promptly returns to baseline now. Its a feeling sort of like being buckled into a seat in a car after years of floating in mid-air. In these ways, these capsules are MUCH more like the OpenBiome FMT than the ones without glycerol.
On the other hand, this "sobriety" was almost completely emotional/mood related, NOT cognitive. My very poor executive function and "brain fog" were NOT cleared. Here it is difficult to compare reliably with the OpenBiome FMT, as I didn't have the same degree of cognitive dysfunction then, although my anxiety was worse. The depth of the "clearing out" from the OpenBiome FMT felt much more thorough and profound, however. It was also progressive and longer lasting--the "reset" from the glycerol UT-AW-1998 was most noticeable about half a week in, and then as time went on it didn't disappear, but plateaued and was somewhat lost among the fluctuations after then.
Also absent was the sudden delayed improvement of mood a month to six weeks in. I'm now well over two months since the first capsule and over a month since the last one, and while there continues to be if anything gradual improvement, it's VEEEEERY slooooooow. Aside from the effects in the first week, there was no "hump" I ever got over where my situation became qualitatively different from one week to the next. The fact that I haven't had any regression strengthens my confidence that the sudden change in direction a month and a half after the OpenBiome FMT was triggered by a misstep on my part rather than spontaneous, however I have yet to actually get near the level of maximum improvement of that FMT.
Another change is that now problem foods and alcohol are unlikely to cause outright stretching aching pain in my gut like they did before this round of FMTs, but they still cause a distended belly and anxiety flares a day or two after. My gut also doesn't feel like it needs sweet foods to feel normal, I have completely stopped eating them although I had non-dairy ice cream almost daily before these FMTs. I still don't have much “functional energy”, but now I tend to feel simply tired when reaching my limit rather than overwrought and almost “strung out”.
One other thing I should mention—I did report food-poisoning-like symptoms with only the very last capsule of the previous set. I did have some of this again from the beginning with the second set, if I took too many capsules in one day. When I put in this order, the donor was having difficulty obtaining dry ice, so it's possible the capsules were sitting in her freezer for several weeks before being sent, like the first set sat in my own freezer before I first had this side effect. This makes me think it may be in part due to a lack of freshness.
Other people have mentioned this donor's stool imparting a “rubbery” smell to their own stool and/or body—this smell, which could in fact be described as “rubbery”, or alternatively like an air conditioning unit run for the first time in months, newspaper, or mothballs, seemed to be in large part a factor of the capsules being frozen without glycerol. It's still present to some degree even with the glycerol but is balanced out by the other microbes and isn't nearly as noticeable.
So in summary, here are the effects of the three FMTs for comparison.
UT-AW-1998 frozen WITHOUT glycerol:
GI:
--Significant diarrhea after first dose, increased tendency toward diarrhea as long as I was doing the FMTs
--Sulfur gas that has persisted even after over a month of no FMTs of any kind from this donor
--Warm physical sensation in belly/abdomen
Rest of body/brain:
--Worsened insomnia after first dose
--Immediate but rather superficial moodbrightening—a warm, glowing optimistic feeling. Effect was generally “activating” more than calming.
UT-AW-1998 frozen WITH glycerol:
GI:
--Stool hardening to the point of near constipation beginning after first dose, before leveling out on the firm end of average after multiple doses
--Almost complete loss of any craving for sweet foods, gut feels “normal” without them rather than like something is missing
--Much less prone to gut pain
--Gut feels somewhat more “full”
Rest of body/brain:
--Significantly more level mood and feeling “held in place"
--Less likely to go into “paradoxical overdrive” when worn out
OpenBiome:
GI:
--Stool hardening to the point of near constipation in first few days after procedure, before leveling out at firm end of average after 1-2 weeks
--Gut felt pleasantly completely “full” like a “hole” was filled
Rest of body/brain:
--Immediate and rather profound anxiety reduction, energy level much more functional and smooth rather than bouncing between hyper- and hypoactive
--Dramatic jump in mood state about a month after, to where I felt reborn and truly well mentally for the first time in years
- FMT Clinics
- I included all required info
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