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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
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BO Sufferers Podcasts

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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
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NORD Member Organization
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rareconnect.org 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

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

Monday, September 18, 2017

Could choline deficiency go with TMAU ?

A new paper seemed to show that MICE that had a gut flora rich in tma-producing bacteria were prone to having BLOOD CHOLINE DEFICIENCY, and exhibited symptoms associated with choline deficiency.

It raises the questions :
1. If a human with TMAU1 or TMAU2 (before diagnosis) is prone to develop long-term choline deficiency due to TMA bacteria 'eating' the choline.
2. If someone then follows the low choline diet protocol is choline deficient, or even moreso.    

Choline plasma testing should be part of a TMAU 'profile' test, but it seems choline blood testing is a very difficult test to find from a health testing service, if at all.
It was only recently upgraded to an 'essential' nutrient, but still seems to be largely ignored despite known to be crucial for pregnant women, but probably still underestimated for everyone.

Some roles choline plays :
1. It is a main 'lipotropic' factor for the liver, in essence being a fat decongestant. Perhaps someday it will be regarded a factor in 'non-alcoholic fatty liver', or perhaps TMAU people are prone to NAFLD.
2. It is a main methyl donor.
3. It has an important role in the brain.

What the study did :
The study seemed to put 'gut-sterile' mice in 2 groups. 1 group was given  tma-producing bacteria. Group 2 was given the same bacteria that had been genetically altered to not 'cleave' choline into tma.
It seems group 1 developed choline deficiency symptoms, while Group 2 did not.

Human TMAU - Choline dilemma :
There must be some thought that this might be true for TMAU humans too.
Only a choline blood test could probably confirm this, but is currently difficult to access.

Any form of choline less suitable for gut bacteria ?
The ordinary form of choline seems to be ideal for tma-bacteria.
There has been some 'talk' that perhaps choline in the form phosphatidylcholine (PPC) is harder for some types of gut bacteria to break down, but nothing can be confirmed of this.
Lecithin is mainly PPC (and less expensive than pure PPC), but lecithin contains other things (perhaps normal choline ?).
IN THE END, THIS ALL MAY BE POINTLESS OR MAKE THINGS WORSE, THE BESAT OPTION WOULD BE A CHOLINE BLOOD TEST.

Choline testing campaign :
Ultimately probably the best option would be a campaign to access the choline blood/plasma test. Since none of the main test labs seem to test for it, it's hard to know where to look.

One common test that may be of some use is a liver untrasound. This may show some signs of FLD. But it seems FLD may be common in Westerners due to the diet etc (just that for most it won't get so bad as to give symptoms).
It would be interesting to see if non/symptomatic NAFLD was a pattern in TMAU.

Interventions to stop gut-flora altering choline :
In the paper they use sterile mice and give group 2 a bacteria modified to not have the choline-tma enzyme.
In humans probably the best option will be Hazen/Cleveland/P&G microbe tma-blocker that is currently being researched (release date unknown) as this will simply block the formation of tma in the gut.

2017 Paper : Choline in mice

wikipedia :
Choline
Lecithin 
Phosphatidaylcholine

Pauling Institute : Choline

Choline, Its Potential Role in Nonalcoholic Fatty Liver Disease, and the Case for Human and Bacterial Genes1,2

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