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Looking for fecal transplant donor

Daffodil

Senior Member
Messages
5,855
be careful someone died because even though the donor was healthy, he carried low levels of a drug resistant e coli strain. the recipient had a compromised immune system
 

Guwop2

Senior Member
Messages
173
I wonder if that website is a scam because you cant mail that to the USA. its FDA regulated. they treat it like an organ transplant! they would shut this down immediately

I came across that site some time ago, i think it's legit (i.e not a scam), though ive not used it personally. It's run by the chief moderator (and maybe founder) of the subreddit r/humanmicrobiome. Goes by the name of MaximilianKohler. He seems very knowledgeable about gut-related things, and i believe he has M.E/CFS too. Lots of posts by him on the site here . As a novice though i do find it hard to fully trust him, despite his seeming expertise on gut-related matters, perhaps bc there's something quite militant about him - he doesnt suffer fools gladly and he's maybe overly sure of himself, but i suppose like many of us he's been condescended to by the medical establishment for years, so maybe his short-shrift approach is just symptomatic of that. He did have a list of probiotics that he personally approved, and one (S. Boulardii by Jarrow) came highly recommended by him. I tried it, got really awful symptoms and wrote about it on the subreddit - but my post got removed by him. Maybe it infringed some the subs guidelines (redditors are sticklers for orthodoxy), but i never found out why, despite asking. Anyway, def worth checking him out, he has posted an enormous ammount of super valuable information and overall i think is positive force. Surprised he doesn't stalk the risingphoenix forum..
 
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Daffodil

Senior Member
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5,855
@Guwop2 thanks...i did come across that name when I was reading some posts on that forum. I dont understand how the FDA allows this though? There is another site that sells it for $500 per dose I think. Its a medical doctor. I came across it on a podcast with a guest who claims she treated her chronic lyme disease with FMT and is a lot better: microbiomes.com

OpenBiome sells it to trial sites for $1695 USD per dose I think....so I am a little worried about how others can sell it that cheap. They take it all from the same very healthy person I think.....but still....
 

helios

Senior Member
Messages
136
Location
Brisbane
has anyone place an order on this site?

https://microbioma.org/en/order-fmt/

I am looking for a good donor for fecal transplant

thanks
That site seems to have changed since I registered. It was originally set up I thought to bring donors and recipients together + also provide some sort of legitimacy for recipients who would print out their 'seeking donors' poster to display for prospects. I guess since they knew all the details of the donors they could contact them to be suppliers for them to expand their scope and provide for others around the world.

We don't quite know what their diagnostic criteria is for 'super' donor, but hopefully they are well familiar with what makes a great donor and not just merely one who doesnt show signs of a current pathogen. If its Max then thats great. Its not too bad price wise but killer postage and they are not limiting it to just c.diff patients like the MIT FMT in a pill offshoot does, and maybe because its EU based it doesnt have to deal with FDA regulations. Customs will have to be checked out in terms of allowing biological matter into the country. I dont think Australia/NZ will allow it. Maybe if its contravenes FDA guidelines US customs will block it too.
 
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helios

Senior Member
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136
Location
Brisbane
I came across that site some time ago, i think it's legit (i.e not a scam), though ive not used it personally. It's run by the chief moderator (and maybe founder) of the subreddit r/humanmicrobiome. .
Max was associtaed with it but he branched off to focus on the US market. This site is based in Spain. Presumably they have the same focus on what consistitutes a high quality donor as Max does. I'd love to hear from others who used them, rather than brief testimonials posted on the website.
 

Daffodil

Senior Member
Messages
5,855
Max was associtaed with it but he branched off to focus on the US market. This site is based in Spain. Presumably they have the same focus on what consistitutes a high quality donor as Max does. I'd love to hear from others who used them, rather than brief testimonials posted on the website.
apparently they have shipped into canada without problem but as far as i am concerned, it would be a big risk to take considering the pricetag. I used to get european anitbiotics shipped here but eventually a package was intercepted at the border...so now I wonder if my name has been flagged somewhere. I would have to order from a location in the US and then cross the border and stay there while I do the treatments. I am told they are labelled as being probiotics but if they are on dry ice, i am sure the package will be scrutinized if i try to bring it back. I think Health Canada considers it an organ
 

helios

Senior Member
Messages
136
Location
Brisbane
Daf
apparently they have shipped into canada without problem but as far as i am concerned, it would be a big risk to take considering the pricetag. I used to get european anitbiotics shipped here but eventually a package was intercepted at the border...so now I wonder if my name has been flagged somewhere. I would have to order from a location in the US and then cross the border and stay there while I do the treatments. I am told they are labelled as being probiotics but if they are on dry ice, i am sure the package will be scrutinized if i try to bring it back. I think Health Canada considers it an organ
I agree with your concerns. The amount is not great compared to what a local clinic would charge but for many CFS sufferers who have been unwell for years will have had effected careers and less money and anything like that is a financial hit and when it involves sending the $ overseas to a non audited private business/person its a risky proposition. Dealing with customs is also another layer of risk, and getting a permit would be the ideal way to be sure of its arrival but its going to get classified as biological matter and I suspect it will be a real pain dealing with customs and getting approval. It likely wont be covered in existing guidelines and because you are in individual and not some research lab or corporation they will just play it safe and reject it I'd say, even though the individual who donated could easily fly in and do a poop with no problems.
 

nyanko_the_sane

Because everyday is Caturday...
Messages
655
I have had a few different bacterial infections of the gut and it is no fun at all.
FEED_2_1024x1024.jpg

I might be willing to try unicorn poop, “Taste The Rainbow.”
 

Daffodil

Senior Member
Messages
5,855
@Guwop2 @helios @Hip @petterer so I have been seriously thinking of doing FMT at home. I cannot afford the clinics. I have scoured the internet looking for people who have ordered poop from the various sites. I found 3 positive reviews for ME/CFS/Lyme remission from the website microbiomes.com. THis is run by a naturopath. However, it appears that something is wrong now because I am getting no response. It is very upsetting because I found the most legit-sounding testimonials for this one. I wonder if they were shut down. Microbioma.org I have only managed to find 1 testimonial for our disease and one for autism I think. I found one for Lyme from a place called MGInfusions. This guy sells directly to patients but used to be a donor at RDS? infusion in Florida. He only charges like $80 per FMT! But....I do not know if he is screened for drug resistant E Coli. He ships within the US only. And I ran into 1 person with Lyme who had good results.

It is very tempting to risk it and order it all in the mail on dry ice. It would still be a big effort because I would have to cross the border into the USA (unless I order from Microbioma.org who ships again free if its confiscated at the border) and perhaps stay there and do it in a hotel for 10 days or something. I have no idea if the border agents will take it,

I am desperate to try this but still not sure what to choose and how big a risk I should take.

There is also Max's website. I tried to contact but no response yet. It is very new. I cant find the link now

any new info would be very appreciated. thanks
 
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94
I was notified about this thread. I used to run the North America portion of microbioma.org, and have started up the HumanMicrobes.org project. I have the opportunity to use microbioma's donor for free but have chosen not to, since they are not scientifically tracking and reporting results, and I've seen a few concerning individual reports.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
I was notified about this thread. I used to run the North America portion of microbioma.org, and have started up the HumanMicrobes.org project. I have the opportunity to use microbioma's donor for free but have chosen not to, since they are not scientifically tracking and reporting results, and I've seen a few concerning individual reports.

I've read your writeup on fmt. Very good. It seems as though caplets are the best method of administration. Easier, no pain, affects more of the G.I. system. Am I misreading it?
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
I recommend doing both routes.

Thanks. I have Crohn's and CFS. If I found a donor who was 'fairly good' but not in the top 1%, would that still be worth it for me to attempt a FMT? Example, someone in early 20s, no diseases, no emotional or neurological issues, consistent type 3 stools, good bmi, fairly outgoing/motivated.