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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

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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

Wednesday, January 7, 2009

Secondary Trimethylaminuria explained

Primary Trimethylaminuria urine test (TMAU1)
Secondary Triethylaminuria urine test (TMAU2)
Overgrowth of bacteria that produce trimethylamine
DNA test looks for known FMO3 mutants/polymorphisms. FMO3 DNA test.

Primary Trimethylaminuria urine test with Gas Chromatography/Mass Spectrometry : This is a test of trimethylamine-n-oxide and trimethylamine levels after a (presumed) trimethylamine load of some sort (either choline or foods containing choline, relying on the gut bacteria to turn it into trimethylamine). FMO3 enzyme turns trimethylamine into non-odorous trimethylamine-n-oxide. In a normal person, about 91% or more of the TMA is expected to be oxidized to TMA-Oxide by FMO3 in the liver. There is no internationally agreed level at which abnormal levels are categorized, but as a guideline, one expert suggests :

TMAO x 100/TMA + TMAO = more than 90%
TMAO x 100/TMA + TMAO = 70% - 90% : implies 'mild' TMAU
TMAO x 100/TMA + TMAO = less than 70% : suggests 'severe' TMAU

Secondary Trimethylaminuria urine test with Gas Chromatography/Mass Spectrometry : It seems secondary TMAU (TMAU2) is supposed to be all forms of increased TMA levels not to do with a genetic FMO3 deficiency, but in practice seems to be used to  label people with excessive TMA and TMAO levels who are also converting over 90% of the TMA to TMA-oxide. It usually implies they have an overgrowth of TMA-producing bacteria. If over 90 % conversion is reached, they seem to have a normal functioning FMO3 enzyme, but are producing so much TMA that the TMA and TMAO levels are very high and there is still enough TMA unconverted to produce a smell. This is to do with TMA concentration. Most labs do not seem to take TMAU2 into consideration in their results, with Sheffield Children's Hospital being an exception. Their current acceptable level of TMA is set at under 10.8. People can have both TMAU1 and TMAU2 (i.e. genetic TMAU and TMA overgrowth). Someone with only TMAU2 due to bacterial overgrowth should in theory be totally curable (by eradicating the bacteria overgrowth)  

Example of TMAU2 result :
TMA 20
TMAO 380
% conversion :  95% (normal)
TMA is over 10.8 (Sheffield level) so TMA smell still expected

Someone with only Secondary Trimethylaminuria would likely be advised not to do the DNA test, but at this point in understanding the problem a suggestion is to do the DNA test if possible if in doubt.

More information on TMAU testing


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