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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, July 31, 2011

Suggestion for when trying to convince a Dr of TMAU

Tip : Visiting a Dr about TMAU : provoke the symptom by taking choline bitartate (or other cheap absorbable form of choline) for a few days beforehand.
One of the main problems with someone who feels they have TMAU but cannot convince a Dr about the problem is that they are likely to be 'transient/intermittent/periodic' cases, and possibly cannot usually smell themselves and so don't know how to 'smell on demand'.

A suggestion is (if you think it may involve TMAU) would be to buy choline from a health shop and take it for a day or 2 before the visit to the Dr. You may then at least be smelling at the visit. It would probably be best to choose a form of choline other than phosphatidylcholine, which is not is easy for bacteria to break down than other types of choline. The most common form of choline is choline bitartate, which would do fine.

It must be remembered that this may only provoke an odor in a strict TMAU case that has bacteria in their gut that breaks down the choline to TMA. Without the bacteria the choline will not be changed. Probably the real way to see if you have an FMO3 weakness would be to take TMA capsules, however for obvious reasons (horrible taste and no usefullness) these are not readily available.    

It must also be pointed out that this should in theory only be expected to provoke a 'fishy odor', whereas people with 'FMO3 body odor' may have their odors caused by other FMO3 substrates which although can be processed by other enzymes may have built up to excessive levels.


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