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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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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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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

Thursday, May 29, 2008

Email from Dr Werner : Author of recent anecdotal TMAU-desmopressin paper

Werner, D.
"Die Trimethylaminurie (Fischgeruchsyndrom) - Hinweise auf eine neue Therapiemöglichkeit mit Desmopressin", Aktuel Urol 2007; 38: 406-407.
Pubmed abstract :

Dr. Werner was kind enough to write for this blog a summary entitled, "English Summary and Advice for Doctors/Patients" of his original paper published last year, [Trimethylaminuria (fish-odour syndrome)-- hints for a new therapeutic option with desmopressin]. This is a case study of a young boy who presents with enuresis, was treated with desmopressin, and his mother noted that his fishy body odor temporarily completely disappeared under this therapy. Dr. Werner invites physicians, scientists, and patients that support or disprove the postulated efficacy of desmpressin upon trimethyaminuria to contact him. He asks us to use his paper for the blog because, "The wider the information is spread, the higher is the chance to get some positive or negative responses from patients". Please keep in mind this is a coincidental, anecdotal observation on one case, and Dr Werner does not recommend this as a treatment for TMAU for reasons he states below.

Here is Dr Werners English Summary and Advice for Doctors/Patients :
Werner, D.

“Die Trimethylaminurie (Fischgeruchsyndrom) – Hinweise auf

Ein neue Therapiemöglichkeit mit Desmopressin”

English Summary and Advice for Doctors/Patients

The above mentioned article provides a case report of a child suffering from trimethylaminuria (TMAU), also called fish-odour syndrome. For other reasons (enuresis) the young boy was treated with desmopressin. His mother noticed that her son’s fishy body odour temporarily completely disappeared under this therapy. This effect could be reproduced for this patient. Based on this observation the author presented a possible molecular mechanism that might explain the effect and the simultaneously observed ineffectiveness of desmopressin against the original indication.

The article is based only on a single case that is not representative. More data and further evaluation are necessary for evidence. Therefore, the objective of this publication is to share the information with patients, practitioners, and scientists worldwide with the hope that similar observations may exist or be found. This could be the starting point for further tests and the development of a new therapeutic option.

Desmopressin (also called vasopressin, DDVAP, StimateTM, MinirinTM ) is a potent drug not approved nor registered for this indication. The adverse side effects might be higher than the possible benefit. The author (pharmacist and food chemist) is not entitled to encourage any testing or treatment in cases of TMAU and does not recommend it. This off-label use is the only responsibility of physicians and their patients.

The author appreciates any discussion and information from physicians or patients that support or disprove the postulated efficacy of desmopressin against trimethylaminuria. Please contact the author directly by e-mail:

27 May 2008

Full paper in German available at : Yahoo Trimethylaminuria forum files

Translation into English: TMAU Hints for a new therapeutic option with Desmopressin - translation into English

links on desmopressin :

Recent FDA warning (Dec 2007) :
Web MD article on warning :


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