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

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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
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NORD Member Organization
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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

Sunday, December 19, 2010

Trimethylaminuria case study in the Lancet

The British Medical Journal, The Lancet, this month includes a case study of a 45 year old man in Holland who has a severe body odor and was diagnosed with Trimethylaminuria (TMAU).

We do not have access to the full article but we are told he had a phenotype diagnosis with the urine test at the metabolic lab of the university of Neijmegen and Edit : It was originally thought the genetics were done in Heidelberg Germany, but a commenter has informed us it was in fact done : "by Prof Cornelis Jakobs PhD Metabolic Unit, Department of Clinical Chemistry, VU University Medical Centre, Amsterdam, The Netherlands".

In January, 2006, a 45-year-old man presented to our department; he complained of a strong objectionable body odour, resembling the aroma of fish, which had a profound influence on his life. He decided to seek help, because of marital problems related to his body odour. His wife noticed that the smell was present in his sweat, urine, semen, and saliva, and it got worse with consumption of certain food products. He had been offered a better job, but declined when he noticed that he had to sit in ...


Anonymous said...

The genetics weren't done in Heidelberg Germany, but in Amsterdam!
by Prof Cornelis Jakobs PhD Metabolic Unit, Department of Clinical Chemistry, VU University Medical Centre, Amsterdam, The Netherlands

Feb 16, 2011, 5:57:00 PM
blogcontributor2 said...

Thanks. Does the Amsterdam genetic lab see referred patients ?

Feb 18, 2011, 2:39:00 PM
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