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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
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MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned

Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
NORD Member Organization
See RareConnect TMAU

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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

Tuesday, September 2, 2008

Take the Reigns (excerpts from my anthology essay)

Picture: My sister [on the right] and me 1970

One warm Saturday Floridian night, my husband and I picked up our 14 year-old son, Alberto, his girlfriend, Pía, and five of their friends from the movies in our SUV to take them to their respective homes. All was well in Alberto’s relatively short life as he was enjoying the beginning of his high school years with his many new friends and beautiful girlfriend of almost a year; little did he know that all this would soon be detoured as the old millennium faded into the new one.

All of a sudden, a strange odor filled the truck that alarmed my husband and me. There were no mangroves around this part of Miami, so why did it smell like the peculiar odor of decomposing death? Is there something rotting in this truck, I thought. But we never smelled it driving to the movie theater on our way to pick them up. Then again, was it a mangrove odor, or possibly a burnt rubber odor, though not quite, or perhaps some type of sulfur acne cream that any of the kids could be wearing? But why would a manufacturer produce such a horribly smelling product in this day and age?...

Later that night as we were getting ready for bed, I dared ask my husband what he thought was causing this odor in Alberto. He seemed fixated in simply trying to identify the odor, “It smells like feces, but I don’t think it’s coming from his butt. It’s coming from his mouth, how could that be? In fact, I think it smells of bile...”

In spite of him withdrawing more and more into his room, most of his high school friends strove to maintain their friendship with him; and to this day, they have continued coming around our house. Most of them have loved him very much, and have seemed to treat him as the ‘guru’ of the group. Every time they each had a problem, they would seek refuge in his smelly room as they offloaded their inner turmoil on him, and they somehow found comfort and guidance in his smelly words. My heart died a little each day as I feared he was gravely ill, and I hated myself for yet again being totally powerless to save the people I love most...

One year after my sister’s death: As these eight years of Alberto’s odor passed with no answers, I had only seen my son falling into a very profound depression, which was deeply reflected in his beautiful face and in his reclusive loneliness… I can’t give up, I will fight back, and I must keep searching…


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