FMT - good Idea for my circumstance? Plus list of donor possibilities Donors 

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indigo34

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Dec 14, 2024
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[SIBO]
I have severe microbiome damage from being led down the "SIBO" path. I know now SIBO is a bullshit diagnosis whose symptoms describe microbiome dysbiosis. Personally I think it's a scam to sell more antibiotics - as if more reasons are needed though lol. Truly disgusting how they prey upon the people with the most vulnerable microbiomes, sell them a quick-fix miracle to life-long gut issues, and sometimes destroy what's left of their health in the process.

[Health Problems]
After the treatments I developed severe anxiety, panic attacks, insomnia and stomach pain. The doctors told me I was crazy. I knew there was something physically wrong so I researched and found out about histamine intolerance. I was able to control these symptoms with diet and DAO enzymes. But I still have numerous issues, even moreso after I likely contracted food poisoning. I now have chronic fatigue, PEM, brain fog, GI distress and a million food intolerances. Genova testing revealed I have 98% less bacteria after the SIBO treatments and E. coli overgrowth. I have enteritis now too that I think is becoming chronic, and carbohydrate and fat malabsorption. GI doctors suspect Crohn's but I haven't had a scope yet.

[Advice Wanted]
I am considering FMT but scared of making myself worse. I am also scared of being unable to work, needing surgery, losing parts of my intestines, being on immunsuppressants. I don't know what the lowest risk decision is.

[FMT Criteria]
I am lucky to have a decent network of friends and family and some potential donors. (Only 2 confirmed) Thoughts on most important criteria? Stool type or exercise ability? What to look for from a microbiome test? Is there usefulness in trying a single capsule or 5 capsules before a full-dose FMT? The following is what I know about the donors. I would try to travel to the donor if they are far away.

[Possible Donors]
1. 2-year-old son - Healthy, happy, very active, good language skills for age, lots of energy, but allergies and possibly asthma. (I have allergies) Variable stool, usually types 2 and 4, medium brown. Does not smell bad like H2S like mine. Less than 1% proteobacteria from testing. Figure worst case I won't get worse since I seeded him and wouldn't be introducing new species of proteobacteria to myself.
C-section: No. Breastfeeding: Yes. Antibiotic damage: Yes.

2. Friend (31F) - Healthy, no physical/ mental health problems. Consistently type 3 stool, dark, sinks, regardless of diet. Said she's ok with being a donor. Somewhat active. Lives 500 miles away.
C-section: No. Breastfed: Yes.

3. Friend (32M) - Healthy, no physical/ mental health problems. Unknown stool type or willingness. Very active, training for marathon. Lives 1 hour away.
C-section: Yes (?) Breastfed: Yes (?)

4. Friend's stepdaughters (15, 19) - Healthy, no physical health problems, mild anxiety that's likely just puberty-related. Unknown stool types and willingness. Somewhat active. Live 30 minutes away. Considering because of age and health.
C-section: unknown. Breastfed: unknown.

5. Cousin (38F) - Healthy, no physical/ mental health problems. Probably willing b/c family. Very active and fit. Mother of several healthy children. Lives 500 miles away.
C-section: Yes. Breastfed: Yes.

6. Step-cousin (41F) - Healthy, no physical/ mental health problems. Unknown stool type and willingness. Active and fit. Mother of several healthy children. Lives 300 miles away.
C-section: No. Breastfed: No.

7. Dad's friend (29M) - Healthy, no physical/ mental health problems. Unknown stool type and willingness. Very active and fit. Ran 100 mile race recently. Lives 500 miles away.
C-section: unknown. Breastfed: unknown.
 
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indigo34 said:
I am considering FMT but scared of making myself worse
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A bad donor can absolutely make you worse. I even got worse from a seemingly-ideal donor.

You could take a look through the experiences on this forum from other people.

indigo34 said:
Thoughts on most important criteria? Stool type or exercise ability?
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Stool type seems to be one of the most important factors but you have to weigh everything together.

indigo34 said:
What to look for from a microbiome test?
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See the wiki.

indigo34 said:
Figure worst case I won't get worse since I seeded him and wouldn't be introducing new species of proteobacteria to myself
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Bad bet.

#2 seems decent but there's not enough info here to judge any candidate, especially not the "stool type unknown" ones.
 
So gathering more info would be your suggestion? Wondering if it is worth considering the older donors (late 30s) and the ones born by C-section. Just hard to weigh the criteria I suppose. Not sure if you have some kind of weighting system?

I am doing testing to determine if I have a gut infection because I think it's possible I still have a mild-to-moderate infection of salmonella or campylobacter or the like from the raw egg from 4 months ago. I have a clinically confirmed inflamed small intestine. I do I think then I might feel at least decently better like someone getting better from c diff. Idk. Another option is antibiotics, as they prescribed cipro and flagyl. I have not taken them though. Other option is a trial of an elemental diet to try to starve out the bad bacteria but that seems hard and I don't know if it would even help. Open to other ideas too.
 
indigo34 said:
So gathering more info would be your suggestion?
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Yes, but I would never give an opinion on a donor without having fully screened them (IE: having them go through the humanmicrobes.org application). Lots of people say "my stool is type 3" and it's not.

indigo34 said:
Wondering if it is worth considering the older donors (late 30s) and the ones born by C-section. Just hard to weigh the criteria I suppose. Not sure if you have some kind of weighting system?
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I do as part of the humanmicrobes.org screening, which is not public information. But I have commented on the blogs and in my personal results reports.

indigo34 said:
Another option is antibiotics
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Covered in the wiki, FMT page.

indigo34 said:
Other option is a trial of an elemental diet to try to starve out the bad bacteria but that seems hard and I don't know if it would even help. Open to other ideas too.
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I have not found that to be highly useful, if at all. In my experience, donor quality is the only thing that matters enough to worry about. Other than that, we'll need to figure out a way to clear the current microbiome/mucosa, and there are other threads on that.
 
Michael Harrop said:
I would never give an opinion on a donor without having fully screened them (IE: having them go through the humanmicrobes.org application). Lots of people say "my stool is type 3" and it's not.
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Gotcha. I have looked at the application process that is public. I will try to replicate that as closely as possible if I can. I've started talking to some friends too to see if they know anyone young and healthy to expand my search. Ive decided to try to go with someone in-person for a few reasons, some of which have come from reading your stuff.
1. Cost
2. Being able to more properly screen the donor which seems essentially impossible at a clinic (from your info)
3. Many FMTs may be needed (5-10+) for long-lasting and potentially curative effects (from your info)
4. Fresh is probably better than frozen
5. If the effect fades over time it would likely be more ideal to access the same donor in the future - likely impossible if going to stool bank or clinic

Michael Harrop said:
Covered in the wiki, FMT page.
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Yes I have read parts of those sections and know from my own experience/ research that antibiotics should generally be considered as an option only in life-threatening circumstances and then only if supported by the evidence. Was just throwing it out there that is a hypothetical option and I have been prescribed those medications.

Michael Harrop said:
But I have commented on the blogs and in my personal results reports.
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Sorry to bother you about this but I don't know if it's written down somewhere your experiences with donors 1-4. I heard you speak about it on a podcast which I'm planning to re-listen to. I only found details for 5+ onward in this forum. I will try searching more though that was a bit of a cursory search. Unfortunately with many experiences people describe on here oftentimes they do not go into much detail about their donors. A lot of time it's because of being a clinic or by mail and they simply don't know. But I find that to be really too bad.
 
Michael Harrop said:
I even got worse from a seemingly-ideal donor.
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I have been reading through the document you linked and I think this was NY_BuddingBear_1994 or donor #12. You mentioned there were red flags towards the end of the screening process and test phase that you ignored. Are you able to share what those were? Also do you describe what the test phase is somewhere in the forum?

Also I finished reading the document but none of the links worked for me. They returned an error code. Even after copy and pasting into a new browser tab. Not sure if this is just a me problem though.

I noticed you got a lot better at choosing donors or at least avoiding bad ones. Was this due to having more time and opportunity to screen them, or learning more about what was important in the health questionnaire, or being able to identify good donor stool appearance and scent better? I didn't really understand why you were saying stool was more important than breastfeeding at the same time you went from saying only a very particular type 3 stool was ok to variable can be good when variable was bad before.
 
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indigo34 said:
I noticed you got a lot better at choosing donors or at least avoiding bad ones. Was this due to having more time and opportunity to screen them, or learning more about what was important in the health questionnaire, or being able to identify good donor stool appearance and scent better? I didn't really understand why you were saying stool was more important than breastfeeding at the same time you went from saying only a very particular type 3 stool was ok to variable can be good when variable was bad before.
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While he MAY have gotten better at avoiding truly BAD donors, keep in mind that his two most helpful donors of all time were both among the first four he tried, yet he's tried around 15 of them by now. The next two most helpful were interspersed among 10+ who didn't make decisive differences. So overall the donors he's tried have become LESS likely to be true game changers as time has gone on. He attributes this to declining quality of donor applicants, but regardless, the success rate hasn't really gone up. As Michael said also, the truly BAD donors were tried out of desperation, not because he "didn't know better" at the time--so even that isn't an indication that the selection process has improved.
 
SFBayFMT5 said:
his two most helpful donors of all time were both among the first four he tried, yet he's tried around 15 of them by now. The next two most helpful were interspersed among 10+ who didn't make decisive differences. So overall the donors he's tried have become LESS likely to be true game changers as time has gone on
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I guess it's a little hard to tell how he ranks them all because I haven't seen an X/10 rating for every one. But he has ranked some later donors 7-8/10 implying they would be game changers for other people I think, or for himself given many doses.

Also are you implying early or initial donors may have a stronger effect one way or the other in general? Or that the effects of FMT may be blunted over time if numerous donors and doses are used?
 
indigo34 said:
I guess it's a little hard to tell how he ranks them all because I haven't seen an X/10 rating for every one. But he has ranked some later donors 7-8/10 implying they would be game changers for other people I think, or for himself given many doses.

Also are you implying early or initial donors may have a stronger effect one way or the other in general? Or that the effects of FMT may be blunted over time if numerous donors and doses are used?
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What I meant was, based on his own self-report his best donors were toward the beginning of his journey, which means his success declined over time. I do not think that this is an inevitable consequence of more FMTs, but it doesn't support a claim that he is getting better at picking helpful donors over time either.
 
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