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

Additional info: https://youtu.be/811v7RLXP9M
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MEBO TMAU TESTING DISCONTINUED
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MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

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

NO LONGER RECRUITING

Participation info : LINK English

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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
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USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

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


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Return cut-off date : passed
Analysis can take 6/8 weeks
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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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Thursday, January 15, 2009

About metabolic body odor

Introduction to the concept (to be updated/edited as and when):

Metabolic body odor, or systemic body odor or bloodborne body odor. They all have the same outcome.

They mean odorous compounds are circulating in the main circulation for some reason.

There can be a number of reasons for this. Some examples would be :

Some weakness in a (most likely, Hepatic) cell enzyme that neutralizes odorous compounds, allowing the compounds to enter the main circulation

Overload of odorous compound(s), causing 'untreated' compounds to circulate in the main system (same outcome as above). An obvious example of this would be that some people smell of curry after eating curry meals.

Perhaps a combination of both
Possibly these are the 3 main reasons, but nobody probably knows. most people with this problem seem healthy apart from smelling, so liver problems seem unlikely.

The only 2 'accepted' 'benign' examples of metabolic body odor probably are
1: Trimethylaminuria
2: Dimethylglycinuria (one pubmed paper)

It's likely that these 2 may not be the only types of metabolic body odor. Many people mention smelling fecal or gas or sewage or various spectrum's of smells. Trimethylamine wouldn't seem to explain all these various smells.

Only TMAU is occasionally investigated by a handful of researchers around the world. You could say the problem is quite neglected. Geneticists estimate perhaps up to 1% could be 'at risk' of poor FMO3 function. It's told to anyone interested that it's an autosomal recessive disorder, but some studies are casting doubt on this too.

At this point, there are those diagnosed with TMAU who believe this is their sole problem, so they at least have a diagnosis and treatment protocol. For the rest, currently we don't have any diagnosis, and this is the stage we are at.

It's probably best the community empower themselves to create research and awareness, rather than rely on anything currently and in the future offered by the system (for those few that are even aware). Probably a lot more could be done.

Fecal body odor/Gas body odor
Special mention is given to these types of body odors, which seem to be 'intestine-derived' body odors, where the smelly chemicals somehow seem to be circulating in the main bloodstream. In theory some smells may be 'internally' (endogenously) produced. For instance it's now known hydrogen sulfide is produced in the main system (as a 'gasotransmitter'). But most of the smells would seem to be obviously sourced from the gut. At the moment this is an unknown disorder to the medical system, but seems to be the most common form on body odor forums. For any experts who think it's impossible, again the 'curry meal' principle seems to disprove this. As with trimethylaminuria (which is also intestine sourced), the obvious starting points to a theory are that for some reason there is an inefficiency in the 'filtering' process (the liver , mostly. Most likely to do with one or more hepatic cell enzyme) or that there is a large abnormal dysbiosis of the gut flora, which leads the a large amount of the smelly chemicals in particular being produced (or else it is a unique particular dysbiosis with this condition). Or perhaps a bit of both. At the moment it is anyone's guess.

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