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

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MEBO Karen
at UK Findacure conf 2020

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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

Thursday, August 4, 2011

New TMAU paper : L-Carnitine treatment and fish odor syndrome: An unwanted adverse effect.

This is a new 'case study' trimethylaminuria paper by a group in France. There is very little to read in the abstract,  but it implies that a patient on Levocarnitine treatment was probably smelling (of fish ?) and they were tested and found to be positive for TMAU. This problem with levocarnitine has been mentioned before in pubmed. It has to be remembered that TMA can be produced from carnitine by gut bacteria.

They use concise terms that in effect describe TMAU1 and the most common form  of TMAU2 (bacterial overgrowth):
TMAU1 :  enzyme deficiency (FMO3)
TMAU2 from bacterial overgrowth :  enzyme saturation

Presumably the paper title should say "unwanted" rather than "unwaited"

[L-Carnitine treatment and fish odor syndrome: An unwaited adverse effect.]
[Article in French]
Rocher F, Caruba C, Broly F, Lebrun C.
Centre régional de pharmacovigilance (CRPV) de Nice, CHU de Nice, hôpital Cimiez, 4, avenue Victoria, BP 1179, 06003 Nice cedex 1, France.

Levocarnitine treatment is usually well tolerated, with essentially dose-dependent diarrhea as the main induced adverse effect.

We report a case of fish odor syndrome during levocarnitine treatment which resolved after levocarnitine discontinuation.

This adverse effect seems to be correlated with excedent carnitine intake and might be expressed when the elimination pathway becomes saturated or in a situation of deficiency enzymatic metabolism.

So it should be remembered that the TMAU diet probably involves reducing carnitine as well as choline.
wikipedia entry for carnitine


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