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

Additional info: https://youtu.be/811v7RLXP9M
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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

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MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
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USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, January 3, 2012

Methionine adenosyltransferase deficiency and body odor/halitosis

enzyme at fault : Methionine adenosyltransferase 1 or 3
easiest way to detect : raised methionine plasma, or DNA test

MAT deficiency is step 1
Note : other enzymes can cause hypermethioninemia, but they are also expected to cause obvious severe health disorders. If it is just an odor problem or perhaps spurious health problems, then the hypermethioninemia is expected to be 'isolated MAT1/3 deficiency', commonly referred to as 'isolated persistent hypermethioninemia'

MEBO Research is always looking at the various enzymes that may be at fault for no obvious health problems except a body odor and/or halitosis. One such enzyme that may be a problem with some is the Methionine adenosyltransferase 1 or 3 enzyme, that is part of the 'methionine cycle' and is currently thought to result in an odor caused by dimethylsulfide (a boiled cabbage odor), but whether other sulfury odors may also be possible is not yet known.

How to test

The easiest test is probably a methionine plasma test, since an increase in methionine level is predicted likely if the person is smelling at that time. Whether the person feels they would need to do it as a loading test (i.e. load up with a methionine dose) is currently debated. Since most in our community feel they are 'episodic' odor cases, maybe a loading test would be best. Methionine plasma testing is part of a regular 'amino acids' test performed in pediatric clinical testing labs, so is a relatively common test. However, apparently the offensive odor for this deficiency is caused by dimethylsulfide, and this will not be commonly tested. Whether other sulfides or thiols etc could also be implicated is currently unknown. It can be seen that when cysteine is further metabolized that hydrogen sulfide can be produced.

In the methionine cycle, there are a number of other enzymes that could be at fault too. However these seem associated with other severe health disorders, and an odor would probably be the last of your concerns. The MAT1/3 enzyme is the enzyme at step 1 of the methionine cycle.

So, testing for Methionine adenosyltransferase 1 or 3 deficiency seems a sensible enzyme to rule out when testing for systemic body odors.  


Links on the subject :

http://www.nature.com/ejcn/journal/v59/n6/fig_tab/1602138f1.html
http://www.thesgc.org/structures/details?pdbid=2obv
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1801505/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC185831/?tool=pubmed
http://www.ncbi.nlm.nih.gov/pubmed/1527987
http://www.ncbi.nlm.nih.gov/pubmed/18500573
Pubmed search
body odor petition
MEBO Research

4 comments:

Anonymous said...

I really struggle through life with TMAU I cant take much more of isolation . Please give us some hope.

Jan 4, 2012, 11:47:00 PM
Maria de la Torre said...

Hi Anonymous,
I'm sorry you are suffering so much with this isolation. I hope you join our international skype group by installing Skype, select your Skype username, and invite contacts for your list. You can invite me, under my full name, Maria de la Torre, or the mebopetition.chat sponsor, Jo Jo, who also goes by username skunkhugsj. Once you have registered, you can select the group of people you want to speak with either by chat (writing), or voice calls, or even video calls (video calls are for 2 people only).

By spending time communicating with the 21 people who have made themselves available to skype with you, you will be able to discuss how to best work out your odor problems. Don't despair, read the post I did a few days ago about where we are going as an international community. There is hope.

María

Jan 5, 2012, 12:03:00 AM
Anonymous said...

It seems impossible to 'work out' this odor problem but dont stop loving life. I have just drafted a letter which is going to a big Govt. Dept. about discriminatory treatment I received in one of their major professional offices due to this condition I suffer. Unlike obnoxious people in the street Govt. departments employing obnoxious professionals, who deal with millions of people including children, can just re-educate their people to cover all disabilities.

Jan 17, 2012, 4:41:00 AM
Maria de la Torre said...

Thanks for trying to make a difference. If there is anything MEBO can do to support your efforts, please email me at maria.delatorre@meboresearch.org.

Jan 17, 2012, 9:59:00 AM
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