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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
MEBO Karen
at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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

MEBO Private Facebook Group
to join : go to
or contact
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BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
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
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect

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MEBO survey for Dr Hazen click here
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Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

MEBO Research Clinical Trials

Wednesday, January 7, 2009

Secondary Trimethylaminuria explained

Keywords/concepts:
Primary Trimethylaminuria urine test (TMAU1)
Secondary Triethylaminuria urine test (TMAU2)
Trimethylamine-N-Oxide
Trimethylamine
Overgrowth of bacteria that produce trimethylamine
DNA test looks for known FMO3 mutants/polymorphisms. FMO3 DNA test.


Primary Trimethylaminuria urine test with Gas Chromatography/Mass Spectrometry : This is a test of trimethylamine-n-oxide and trimethylamine levels after a (presumed) trimethylamine load of some sort (either choline or foods containing choline, relying on the gut bacteria to turn it into trimethylamine). FMO3 enzyme turns trimethylamine into non-odorous trimethylamine-n-oxide. In a normal person, about 91% or more of the TMA is expected to be oxidized to TMA-Oxide by FMO3 in the liver. There is no internationally agreed level at which abnormal levels are categorized, but as a guideline, one expert suggests :

TMAO x 100/TMA + TMAO = more than 90%
TMAO x 100/TMA + TMAO = 70% - 90% : implies 'mild' TMAU
TMAO x 100/TMA + TMAO = less than 70% : suggests 'severe' TMAU

Secondary Trimethylaminuria urine test with Gas Chromatography/Mass Spectrometry : It seems secondary TMAU (TMAU2) is supposed to be all forms of increased TMA levels not to do with a genetic FMO3 deficiency, but in practice seems to be used to  label people with excessive TMA and TMAO levels who are also converting over 90% of the TMA to TMA-oxide. It usually implies they have an overgrowth of TMA-producing bacteria. If over 90 % conversion is reached, they seem to have a normal functioning FMO3 enzyme, but are producing so much TMA that the TMA and TMAO levels are very high and there is still enough TMA unconverted to produce a smell. This is to do with TMA concentration. Most labs do not seem to take TMAU2 into consideration in their results, with Sheffield Children's Hospital being an exception. Their current acceptable level of TMA is set at under 10.8. People can have both TMAU1 and TMAU2 (i.e. genetic TMAU and TMA overgrowth). Someone with only TMAU2 due to bacterial overgrowth should in theory be totally curable (by eradicating the bacteria overgrowth)  

Example of TMAU2 result :
TMA 20
TMAO 380
% conversion :  95% (normal)
TMA is over 10.8 (Sheffield level) so TMA smell still expected

Someone with only Secondary Trimethylaminuria would likely be advised not to do the DNA test, but at this point in understanding the problem a suggestion is to do the DNA test if possible if in doubt.

More information on TMAU testing

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