Is OpenBiome doing something unique (at least as compared to other stool banks or clinics, if not as compared to HMorg)?

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SFBayFMT5

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This is inspired by an experience archived last year by someone who tried OpenBiome, Taymount, NewBerry, and the "MG" donor who used to be around. I'm not putting this in the experiences section because this is not about his/her, or my, experience (those who want to read MY experience with OpenBiome can do so, I posted it). But I started this because I noticed a lot of similarities to myself.

This person had Lyme disease (or at least suspected Lyme), wrecked his/her gut with antibiotics as a result, got C. diff, was treated through OpenBiome and became almost miraculously functional for a time period before regressing. And like him/her, I considered places like Taymount (I'd never heard of NewBerry) but unlike this person never went. However, since the regression after the OpenBiome FMT, this person had not had success with anything OTHER than another OpenBiome FMT. Despite OpenBiome not guaranteeing that anyone gets the same donor twice (or even letting people KNOW if they got the same donor twice), this person's experiences through OpenBiome stood out as very much alike and clearly superior to other FMTs, with NewBerry coming in a distant second.

This makes me wonder, what is it about OpenBiome, or about those of us who respond well to OpenBiome? Is there some sort of heavy antibiotic/Lyme connection? Is there something they do that Taymount and Microbioma don't? And does anyone have any idea what HMorg donors if any these people tend to do well with? I would have thought that maybe my success with OpenBiome was just some kind of fluke if it weren't for this other person in a similar situation for whom success with them was a pattern.
 
The report you're referring to: https://forum.humanmicrobiome.info/threads/my-experience-w-4-different-fmt-clinics-some-amazing-some-bad-open-bio.110/

All of these places suffer from the same problem -- most of their donors are low-quality, and they're a shot in the dark due to lack of info and tracking & reporting of results. There is some data indicating that Openbiome internally tracks results from each donor. But since patients/recipients are still in the dark it's not very helpful.

A lot of Openbiome donors apply to HMorg. Most of them don't qualify but some of them are fairly good and the good results may come from these few donors while the bad results may come from their other ones. We can only speculate though since there's no way to find this out.

I do not think those good results are due to anything special Openbiome is doing, as there are an equal amount of people reporting adverse effects from Openbiome. As far as Openbiome being superior to the other places they visited, I think it's merely an indication of how bad those other places are.

There is someone else on this forum who got worse from Microbioma.org and better from FL-RS-1997. You can also search the results spreadsheet to find other people who used Microbioma.
 
Michael Harrop said:
The report you're referring to: https://forum.humanmicrobiome.info/threads/my-experience-w-4-different-fmt-clinics-some-amazing-some-bad-open-bio.110/
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Yes, that was the one.
Michael Harrop said:
All of these places suffer from the same problem -- most of their donors are low-quality, and they're a shot in the dark due to lack of info and tracking & reporting of results. There is some data indicating that Openbiome internally tracks results from each donor. But since patients/recipients are still in the dark it's not very helpful.
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I agree with the last sentence. Also, the internal tracking is likely limited to cure of C. diff, possibly other GI symptoms, ad systemic adverse effects significant enough to possibly represent a safety hazard. It's unlikely that they track systemic positive effects, in fact they probably couldn't even if they wanted to, because the gastroenterologists who act as the sole liaison between the patients and OpenBiome are in most cases not in a good position to even assess these effects well.
Michael Harrop said:
A lot of Openbiome donors apply to HMorg. Most of them don't qualify but some of them are fairly good and the good results may come from these few donors while the bad results may come from their other ones. We can only speculate though since there's no way to find this out.
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Have you ever tried a FMT from one of the former OpenBiome donors? I'd imagine there are quite a few who would be interested given that it seems OpenBiome no longer accepts stool donations, they are now partnered with a program at the University of Missouri that collects and supplies stool and it seems they just do research. I suspect not many of the donors who used to donate to OpenBiome, which was in Cambridge MA, switched over to donating to the University of Missouri for pure logistical reasons.
Michael Harrop said:
I do not think those good results are due to anything special Openbiome is doing, as there are an equal amount of people reporting adverse effects from Openbiome. As far as Openbiome being superior to the other places they visited, I think it's merely an indication of how bad those other places are.
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It's not just "superior", it's that they had a very significant improvement that lasted until some trigger (such as a new course of antibiotics) caused a regression. And it happened this way more than once.

The only reason even mentioning other sources matters is that it shows that a person isn't just a super easy, "slam dunk" case for FMT in general.
Michael Harrop said:
There is someone else on this forum who got worse from Microbioma.org and better from FL-RS-1997. You can also search the results spreadsheet to find other people who used Microbioma.
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I'm not interested in building a profile of people who failed with Microbioma.org (or Taymount)--I'm interested in building one of people who succeeded with OpenBiome. Especially if that success was repeated, suggesting a pattern.

I searched for references to OpenBiome in the spreadsheet of results, but didn't find anything. I'd think that the number of people whose first introduction to FMT was through them would be rather high though, given that they seem to have supplied a large fraction of the FMTs for C. diff in the US in the period 2013-2020ish. Even though I was living on the complete opposite coast from their location, my gastroenterologist still used their FMT material. I'd think that a significant number of those (even if it was only 20% or something of the cases percentage-wise) saw positive results for things other than their C. diff, and then started researching FMTs as a result.
 
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