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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

Monday, August 4, 2008

Vitamin & mineral deficiencies : An unknown quantity in bloodborne odors

Note : none of the following should be regarded as advice. It is posted only as something to think about. It should not be regarded as wholly accurate and is posted in the spirit of promoting discussion on it.

If someone has what is known on the forums as Fecal Body Odor, which can involve many differing smells, we can safely assume that something is 'not normal'. Obviously, it is important to make sure the metabolizing enzymes are functioning correctly, as well as looking for any reason for the metabolic enzymes being constantly overloaded, but another factor that may be being overlooked is vitamin and mineral deficiencies.

Very often, these metabolic enzymes depend on a vitamin or mineral to function. As most of us know, the FMO3 enzyme requires riboflavin (B2). In theory, it would seem possible that a B2 deficiency could cause that enzyme to work deficiently (but there is no evidence to support this in practice). Another B vitamin involved less directly in FMO3 function is niacin (in its role of being the vitamin required for NADPH). It is unclear if this could be an issue in FMO3 function, since the experts do not seem to advise its use (perhaps NADPH is involved in so many reactions that a deficiency is unlikely. Niacin is also unpleasant in large doses). The status of the B Vitamins is probably a good starting point, since they are often co-factors in the drug metabolizing enzymes (the xenobiotic enzymes, of which the FMO family of enzymes are a part of). B Vitamins are also often produced by good gut bacteria. Biotin in particular.

The main point is, if someone smells of strange smells, longterm as a group it would make sense to be aware of the typical sufferer vitamin/mineral status to see if there is any deficiency trend. Hopefully someday this can be done in a research environment. At the moment it must be assumed it is not an issue (due to no test results or research available)

Reference links:
Vitamins and their coenzyme function :
Example of B2 being recommended for TMAU, although they are suggesting extra to try and stimulate any residual FMO3 enzyme to maximum effect.


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