Advice Re: Gut Bacteria

[junkcrap50]

i assume your FMT attempt did not work on the disease? may i ask for more details? how many did you do?

It is very disappointing that Barody cannot do it for people like us anymore. Not that I could afford to go there, but ...just very sad. damn drug companies.

Sure. No problem. No, the FMTs did not end up working, but I did notice a small initial improvement that lasted about 7-10 days. The benefits I noticed were just a little bit more energy and improved brain fog & clearer thinking. It was small, but I think a definite noticeable change. I lost the benefit I think because I was taking a bunch of prebitiocs in an attempt to help the FMT grow. I think I changed my fiber intake too drastically at the time and screwed up my microbiome - having my normal biome grow & compete with the FMT. I should have kept my diet the same and let the FMT take hold naturally.

My donor was a parent who eats very healthy: very little processed food, nearly all meals cooked from scratch, tons of vegetables and fiber, and far above the average number of fermented foods like kefir, pickles, sauerkraut, etc. Normal/ideal stool type #/shape.

I did 14 FMTs (1 per day for 14 days straight) in 2015. I followed the Power of Poop diy instructions/directions because a GI doctor I saw who did FMTs for C-diff explain his protocol, which was essentially the same: take donation, put in blender, blend for as little time as necessary, filter using collander, & put into enema bag (doc used colonoscopy tools).

I think I fasted for 1 day prior & did a DIY cleanout with Miralax & magnesium before starting the FMTs. But after the first FMT, I kept a normal diet and just made sure to have a bowel movement before the day's FMT.

I wanted to restart doing the FMTs after seeing the slight benefit and learning I screwed it up from the prebiotics. But unfortunately, my donor coincidently developed IBS-D shortly after and no longer had a good potential donor. We think it was caused by eating some cheap, non-organic pork that had antibiotics given to the pig.

It is very disappointing that Barody cannot do it for people like us anymore. Not that I could afford to go there, but ...just very sad. damn drug companies.

Eh, I don't think it would matter much. I think the most important factor is the donor, which you don't know what you're getting with a clinic besides a safe and screened donation. The clinic donors could be recreational drug users or obese or have mental health issues like anxiety or history of depression. I think you need a donor with a perfect health history, no history to antiobiotics, elite fitness level, type-a personality type. etc. is most important. There's too may variables and not enough of the science of microbiome is known yet. But in our situation, any donor we can find will have to do.

 

[YippeeKi YOW !!]

I think the most important factor is the donor, which you don't know what you're getting with a clinic besides a safe and screened donation. The clinic donors could be recreational drug users or obese or have mental health issues like anxiety or history of depression.

You've totally expressed my considerable reservations re FMT .... if you can't line up a known and trusted donor on your own, it's a real crapshoot ...

Oh crepe, that pun was totally totally accidental, deepest apologies .

 

[Daffodil]

I also be in Canada

ya hehe i remembered after i posted that

 

[Daffodil]

Sure. No problem. No, the FMTs did not end up working, but I did notice a small initial improvement that lasted about 7-10 days. The benefits I noticed were just a little bit more energy and improved brain fog & clearer thinking. It was small, but I think a definite noticeable change. I lost the benefit I think because I was taking a bunch of prebitiocs in an attempt to help the FMT grow. I think I changed my fiber intake too drastically at the time and screwed up my microbiome - having my normal biome grow & compete with the FMT. I should have kept my diet the same and let the FMT take hold naturally.

My donor was a parent who eats very healthy: very little processed food, nearly all meals cooked from scratch, tons of vegetables and fiber, and far above the average number of fermented foods like kefir, pickles, sauerkraut, etc. Normal/ideal stool type #/shape.

I did 14 FMTs (1 per day for 14 days straight) in 2015. I followed the Power of Poop diy instructions/directions because a GI doctor I saw who did FMTs for C-diff explain his protocol, which was essentially the same: take donation, put in blender, blend for as little time as necessary, filter using collander, & put into enema bag (doc used colonoscopy tools).

I think I fasted for 1 day prior & did a DIY cleanout with Miralax & magnesium before starting the FMTs. But after the first FMT, I kept a normal diet and just made sure to have a bowel movement before the day's FMT.

I wanted to restart doing the FMTs after seeing the slight benefit and learning I screwed it up from the prebiotics. But unfortunately, my donor coincidently developed IBS-D shortly after and no longer had a good potential donor. We think it was caused by eating some cheap, non-organic pork that had antibiotics given to the pig.


Eh, I don't think it would matter much. I think the most important factor is the donor, which you don't know what you're getting with a clinic besides a safe and screened donation. The clinic donors could be recreational drug users or obese or have mental health issues like anxiety or history of depression. I think you need a donor with a perfect health history, no history to antiobiotics, elite fitness level, type-a personality type. etc. is most important. There's too may variables and not enough of the science of microbiome is known yet. But in our situation, any donor we can find will have to do.

I am not sure you screwed it up. You made a better effort than I did.

This sounds somewhat similar to my experience. The stool banks have a pretty strict protocol for donors so I doubt there would be any drug users or mentally ill people! Its a pretty lengthy screening process. I do have some reservations about the Australian criteria, though. I believe they take stool from people up to 60 yrs of age. Donor quality could explain why Barody's results are not as good as one would expect. Many people tell me to use children, some insist babies are the best.

For people like me, I think 4 - 6 months or more of FMT's - maybe every other day? - would be needed. Maybe more.

When I did the 6 enemas from a company online (VERY expensive but good poop), there was a moment when i was in the shower....and for a few seconds, I felt something so strange, that i had never felt before. Or at least not that i can remember because its been so long sick. I felt this sense of pure happiness and freedom and energy. Because it was such a brief moment, I figured I would need like 150 FMT's to make a dent lol

I thought to myself....I wonder if this is how the donor feels 24/7. Lucky b!@#@#@@! lol

 

[YippeeKi YOW !!]

The stool banks have a pretty strict protocol for donors so I doubt there would be any drug users or mentally ill people!

I can't help but think of the sperm bank donor issues that have been gradually coming to light ...

"Recently, international headlines have announced that several OB-GYNs allegedly inseminated
unsuspecting patients with their own sperm in the 1970s through the early 1990s, conduct
discovered when commercially available genetic testing revealed their transgressions decades later. These physicians were not the first such offenders. In the mid-1990s, another physician, Cecil Jacobson,
was found guilty of federal mail and wire fraud, travel fraud, and perjury as a result of charges for
the very same misconduct. Europe, too, has had its malefactors; a Netherlands physician (now deceased) allegedly used his own sperm to father at least 12 children (now 8–36 years old)." --
Inklings, "Against seminal principles: ethics, hubris, and lessons to learn from illicit inseminations"
​

Shit happ .... uh, stuff happens. Human nature is a strange and unpredictable thing, and I still think it's a crapshoo ..... uh, game of roulette ....

 

[Alvin2]

We think it was caused by eating some cheap, non-organic pork that had antibiotics given to the pig.

What?
So eat one meal in a lifetime that is not pure enough and your done?

 

[junkcrap50]

What?
So eat one meal in a lifetime that is not pure enough and your done?

I didn't say that. I wasn't making a blanket, comprehensive claim like you're generalizing.

I don't know for sure if that was the cause. But that's what it appeared to happen and the only thing we can attribute to the sudden, permenant IBS-D onset. It started 3-4 hours immediately after eating the pork, which was bought outside of our normal shopping habits - while out of town in a small rural town, on sale, big ag brand meat, from a big box chain grocery store. Maybe it was food poisoning, Maybe the pig was sick. Maybe it had nothing to do with the pork and it was just a coincidence. I'm not saying every meat from the grocery store that's not organic, pasture raised, humanely raised/butchured, blah blah blah will make you sick or poison you. Not everything we eat is "pure" and we still shop at normal grocery stores. But that's the only thing we can think of. It's not impossible for it to occur in a random, isolated case. All GI exams, colonoscopies, tests normal. Didn't do pre- and post- microbiome studies, so can't know for sure.

 

[junkcrap50]

This sounds somewhat similar to my experience. The stool banks have a pretty strict protocol for donors so I doubt there would be any drug users or mentally ill people! Its a pretty lengthy screening process. I do have some reservations about the Australian criteria, though. I believe they take stool from people up to 60 yrs of age. Donor quality could explain why Barody's results are not as good as one would expect. Many people tell me to use children, some insist babies are the best.

To be able to run a FMT clinic, some sort of compromises from "ideal" screening criteria have to be made in order to have enough donations. Serious mental illnesses like bipolar & schizophrenia and serious drug addictions are no doubt eliminated. But what about milder stuff like general anxiety, ADD as a kid, recreational pot / alcohol use? If you are very ill with C-Diff or terrible IBS or ME/CFS, then it probably is worth using a clinic's donors. But only C-Diff has had consistent transplant success rates.

When I did the 6 enemas from a company online (VERY expensive but good poop), there was a moment when i was in the shower....and for a few seconds, I felt something so strange, that i had never felt before. Or at least not that i can remember because its been so long sick. I felt this sense of pure happiness and freedom and energy. Because it was such a brief moment, I figured I would need like 150 FMT's to make a dent lol

Wow. Moments like that give hope that ME/CFS can be reversed. Yikes150 FMTs would not be pleasant, especially DIY!

 

[junkcrap50]

Have you seen posts here (pretty sure on phoenix rising, but may have also been on /r/cfs or /r/microbiome) about oral FMT delivered by capsules? Ugg, I can't remember the username. It seems like, having tried both enema and capsule, he/she found the capsule delivery was more effective for their FMT success. @kangaSue might know/remember as she's done / knows alot about FMTs. @MaximilianKohler (an amateur FMT biohacker/expert) and @Master4thDegree have done capsule FMTs. But they're not who I'm thinking of as there have been more recent capsule FMT posts. If I were to do FMTs again in the future, especially if I found an ideal donor, I'd very seriously consider oral/capsule FMTs. Anecdotally, it seems more effective.

 

[Daffodil]

I can't help but think of the sperm bank donor issues that have been gradually coming to light ...

"Recently, international headlines have announced that several OB-GYNs allegedly inseminated
unsuspecting patients with their own sperm in the 1970s through the early 1990s, conduct
discovered when commercially available genetic testing revealed their transgressions decades later. These physicians were not the first such offenders. In the mid-1990s, another physician, Cecil Jacobson,
was found guilty of federal mail and wire fraud, travel fraud, and perjury as a result of charges for
the very same misconduct. Europe, too, has had its malefactors; a Netherlands physician (now deceased) allegedly used his own sperm to father at least 12 children (now 8–36 years old)." --
Inklings, "Against seminal principles: ethics, hubris, and lessons to learn from illicit inseminations"
​

Shit happ .... uh, stuff happens. Human nature is a strange and unpredictable thing, and I still think it's a crapshoo ..... uh, game of roulette ....

lol yes i have heard of the gyno stories LOL.

 

[Daffodil]

I didn't say that. I wasn't making a blanket, comprehensive claim like you're generalizing.

I don't know for sure if that was the cause. But that's what it appeared to happen and the only thing we can attribute to the sudden, permenant IBS-D onset. It started 3-4 hours immediately after eating the pork, which was bought outside of our normal shopping habits - while out of town in a small rural town, on sale, big ag brand meat, from a big box chain grocery store. Maybe it was food poisoning, Maybe the pig was sick. Maybe it had nothing to do with the pork and it was just a coincidence. I'm not saying every meat from the grocery store that's not organic, pasture raised, humanely raised/butchured, blah blah blah will make you sick or poison you. Not everything we eat is "pure" and we still shop at normal grocery stores. But that's the only thing we can think of. It's not impossible for it to occur in a random, isolated case. All GI exams, colonoscopies, tests normal. Didn't do pre- and post- microbiome studies, so can't know for sure.

do you know the most prevalent reason for epilepsy in mexico city is eating undercooked porn and getting worms and larvae in brain/?

 

[Daffodil]

Have you seen posts here (pretty sure on phoenix rising, but may have also been on /r/cfs or /r/microbiome) about oral FMT delivered by capsules? Ugg, I can't remember the username. It seems like, having tried both enema and capsule, he/she found the capsule delivery was more effective for their FMT success. @kangaSue might know/remember as she's done / knows alot about FMTs. @MaximilianKohler (an amateur FMT biohacker/expert) and @Master4thDegree have done capsule FMTs. But they're not who I'm thinking of as there have been more recent capsule FMT posts. If I were to do FMTs again in the future, especially if I found an ideal donor, I'd very seriously consider oral/capsule FMTs. Anecdotally, it seems more effective.

yes... i have heard from about 3 people now that they had more success with capsules. i am ready to go. already purchased cheap refurbished vaccuum blender, empty enteric coated capsules, that plastic thing for filling the capsules, saline, etc etc. just need the POOP.

 

[Daffodil]

@junkcrap50 i do believe you are right about some stool banks cutting corners maybe...and certainly some private clinics but....the stool bank i have called locally sounds VERY strict with their criteria. They do indeed have a shortage of donations.

I had found a prospective donor with a great aunt with some disease and they said they would not use them. I Open Biome takes only 1 or 2 % of applicants. I might be a little concerned I suppose but...if the poop was from one of the major stool banks, I would use it and take the risk.

One poor woman on FB had it done (not for me/cfs) in a hospital clinic in sweden by her GP and ended up with inflammatory arthritis, saying it ruined her life. So yes, it can happen. But out of all the FMT's done, the risk is tiny. My luck seems to suck though so LOL

 

[Alvin2]

I didn't say that. I wasn't making a blanket, comprehensive claim like you're generalizing.

I don't know for sure if that was the cause. But that's what it appeared to happen and the only thing we can attribute to the sudden, permenant IBS-D onset. It started 3-4 hours immediately after eating the pork, which was bought outside of our normal shopping habits - while out of town in a small rural town, on sale, big ag brand meat, from a big box chain grocery store. Maybe it was food poisoning, Maybe the pig was sick. Maybe it had nothing to do with the pork and it was just a coincidence. I'm not saying every meat from the grocery store that's not organic, pasture raised, humanely raised/butchured, blah blah blah will make you sick or poison you. Not everything we eat is "pure" and we still shop at normal grocery stores. But that's the only thing we can think of. It's not impossible for it to occur in a random, isolated case. All GI exams, colonoscopies, tests normal. Didn't do pre- and post- microbiome studies, so can't know for sure.

The thing is that correlation does not equal causation. Many people eat such meat and much, much, much worse and do not end up with IBS.

Also many things bubble beneath the surface then come out.
Many people say such and such food chipped or broke their tooth. When in fact the tooth was demineralizing unnoticed for months or a year or more then that food was the last straw, being the one the tooth decided to break on.
Same for some muscle/joint injuries, my chiropractor had mentioned this, its getting injured slowly but it abruptly shows up one day very painfully.
Here is an example

 

[kangaSue]

May I ask if you have done FMT and if so, how did you do?

Yes, I've tried diy FMT (just over 70 infusions in total) for chronic GI dysmotility issues but only had some limited success from it despite persisting with it for about 18 months. I prepped by first doing a bowel purge with Epsom salts (magnesium sulfate) and then a 10 day course of antibiotics (not rifixamin though).

I did a daily infusion for 14 days, then one every other day for 2 months (I think), then 2 a week and tapering to one a week for several months, and the last 12 months involved doing the one monthly infusion.

FMT did help with curbing my worst GI problem, frequent bowel pseudo obstructions, but made no impression on other symptoms associated with having severe idiopathic gastroparesis.

My personal opinion is that for FMT to be most most effective, it needs to involve a component of a 'top down' application too, such as in capsules. I have the advantage of feeding feeding tube access directly into the small bowel (jejunum) and did most FMT's via this route, but still didn't have the benefit I was anticipating from it.

I also would recommend not eating too much fiber or change your diet from your normal diet during and after the FMTs. I think I screwed up my FMTs with too many prebiotics.

I would suggest the opposite, you need fibre in order to feed the new bacteria from FMT and I think a large part of why FMT didn't work for me is because I tolerate very little fibre due to having gastroparesis (fibre slows your motility further).

I had my stool donor try eating a much higher fibre diet to get around that at one stage, but I got strong epigastric pain following these higher fibre infusions so had the donor go back to their standard diet and epigastric pain from infusions stopped.

Interestingly, I had epigastric pain from using frozen prepared stool too. Tracked that down to being caused by the glycerin used as preservative in the prepared slurry and only using fresh stool FMT's resolved the pain issue.

I think the most important factor is the donor

Yeah, donor compatability is probably the biggest factor involved for having a successful outcome and that has been borne out in some studies. Hard enough finding one donor though, let alone having a pool of people to choose from.

I think you need a donor with a perfect health history, no history to antiobiotics, elite fitness level, type-a personality type. etc. is most importan

I read that summed up rather succinctly in one FMT article in saying that the ideal donor shouldn't be mad, bad, sad, fat or female - the latter only because males have fewer hormonal issues to deal with in comparison to women.

But they're not who I'm thinking of as there have been more recent capsule FMT posts.

I can't think of anyone else off hand who have mentioned doing oral capsules.

If I were to do FMTs again in the future, especially if I found an ideal donor, I'd very seriously consider oral/capsule FMTs. Anecdotally, it seems more effective.

There's always a small chance that we can be our own 'ideal donor'. In a couple of different studies I've read (for C diff and Crohn's Disease), controls who were given their own stool in capsules (autologous FMT) as a placebo also had remission of their symptoms;
https://forums.phoenixrising.me/threads/how-i-put-me-cfs-into-remission-even-better.61777/page-5

 

[Daffodil]

@kangaSue i am really saddened to read your post. you actually stuck with this for 18 months? that is unbelievable. you did even more than i was planning and it still didn't stick. very very disappointing. even if you used enemas exclusively, just the sheer number of times you did it ..... one would think that would be as good as a colonoscopy deposit at least, right?

that is so much effort to put into something and not have it pan out. i mean...i can certainly relate to that since i have been doing that for decades, but....just very sad to hear it.

dr. barody tells patients that if they feel better on vancomycin, they have a good chance of benefitting from FMT. i have never taken vancomycin but have taken tons of other antibiotics, both oral and IV. the only one that made a huge impact was rocephin.

did you feel better on the antibiotics you took before the FMT's? which one did you take?

i didnt know people had c diff remission from their own stool! do you mean it was their own unhealthy stool??

they achieve remissions for C Diff with sterile fecal filtrate too with no live organisms in it.....so obviously there is a ton we dont know

could this mean your gut motility issues stem from something structural, perhaps involving the vegas nerve? sorry if we discussed this before, my memory doesnt work. have you been evaluated for CCI/AAI?

do you think that biofilm might be the reason the FMT's didnt work? i sometimes wonder if I should try phages but they arent cheap

 

[kangaSue]

@Daffodil In all honesty, FMT was well worth the effort just for stopping the pseudo obstruction events as these cause the worst abdominal pain imaginable when they strike. I saw a few people saying that it took 18 months of FMT to get their GI problems into remission so I figured I might as well go the distance too.

There's a whole lot still evolving with FMT though and things like the fungal balance and amount of bifidobacterium in a donors stool can influence whether FMT is going to be successful for you or not.

i didnt know people had c diff remission from their own stool! do you mean it was their own unhealthy stool??

Yes, it was their own unhealthy stool. Stool in the colon has a much higher bacterial count and maybe a different diversity, so maybe it's this, or it just contains something in the viral or fungal mix that is lacking in sufficient quantity in the small bowel in the first place.

could this mean your gut motility issues stem from something structural, perhaps involving the vegas nerve?

That's something else I should have mentioned. I don't think I ever had a chance of FMT working for my gut issues as I later found out that I do have a physical vascular abnormality (renal Nutcracker Syndrome) that can cause a state of constant low grade abdominal inflammation (and gastroparesis in some cases), and can involve vagus nerve dysfunction.

I know I have a problem with the vagus nerve anyway as it's generally involved in cases of gastroparesis, but I'm also diagnosed with (idiopathic )autonomic neuropathy (cardiovagal dysfunction) as well.

(ps I don't actually ME/CFS either, renal Nutcracker Syndrome can be a cause of chronic fatigue that can be wrongly diagnosed as CFS)

 

[kangaSue]

do you think that biofilm might be the reason the FMT's didnt work? i sometimes wonder if I should try phages but they arent cheap

I haven't looked into biofilms in any great depth so don't really know. I have read of some people getting little benefit out of doing phage therapy too though so again, not something that works for everyone.

 

[aquariusgirl]

I did a bunch of phages....maybe 5 cycles...off the shelf from Eliava....helped a lot initially but I think I am back to baseline now........but my diet is not good...

I spent about $4k

 

[Daffodil]

I did a bunch of phages....maybe 5 cycles...off the shelf from Eliava....helped a lot initially but I think I am back to baseline now........but my diet is not good...

I spent about $4k

but you didnt do FMT after the phages?