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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

Scroll down and select country
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
Join/Watch the weekly
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
rareconnect.org TMAU

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Blog Archive

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

Friday, September 30, 2011

How do you remove odor after choline load for TMAU Test?

Q & A on the MEBO TMAU Test Program
Posted in the MEBO Forum


Please read the Question and Answer Section of the MEBO Forum to see what sufferers who are testing/have tested through this program had to say. Here is a sample of one Q & A about, “WAYS TO CLEAN UP ODOR AFTER THE CHOLINE LOAD?”

QUESTION:
Like many I'm guessing there is hesitancy to choline load because of the complications involved in detoxing and reeking for months thereafter - any recommendations on how to alleviate that other than anticipating to be a social recluse until the odor wanes again?


ANSWER:
Based on what sufferers have shared in forums with the community, what seems to work best is to go back on the low choline diet (chart begins on page 12) and to do a lot of cardiovascular exercise that produce a lot sweating and heavy breathing as the blood circulates through the kidneys and lungs. Of course, this would require that you drink a lot of water to hydrate and to help the kidneys and skin wash away the odorous chemicals too, and for the lungs to breath them out as well. Rinsing your sinuses with the Neti Pot and tongue scraping is also helpful as the salt in the water and tongue scraping helps remove the TMA-containing mucous that may have built up.

Some sufferers prefer to repeat the TMAU Odor Management Protocol noted in the U.S. National Institutes of Health webpages, while others find that going on the diet, drinking a lot of water and doing cardiovascular exercise does the trick. You might want to read a post in MEBO’s Blog that has Q & A between the blogs readers and me.

My sons and I have found that cardiovascular exercise that makes us perspire profusely is the BEST way to clean out our system. The key is to drink a lot of water as part of the “washing” process and to ingest as little choline as possible until the odor is somewhat controlled again.


MEBO and the lab have an agreement that I can only send them a batch of a minimum of 20 samples at a time, and I am just shy of the 20 samples right now. I am expecting a few this coming week from persons shipping them on Monday or Tuesday, to go over the 20 sample count. However, since the samples can only be shipped on a Monday or Tuesday to avoid weekend delays, I have to wait until October 10th to ship them to the lab. There have been 52 already purchased samples sent out to sufferers around the world, so for those who don't return their samples until after October 10th, their samples will be sent as the 2nd batch to the lab when I receive at least 20 of them.

halitosis research
María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition
body odor petition
MEBO Research

2 comments:

Anonymous said...

thank Maria & Mebo . Everytime I google something , you folks have already thought of it and have a beautiful , informative post on what ever it is ! I'll remember to re-visit this when "un-loading" time comes

Aug 13, 2012, 11:48:00 PM
brogsdale mark said...

thanks maria and mebo i appreciate all of the knowledge and useful info.i never new this problem was that big and that i wasn't alone

Apr 5, 2013, 4:58:00 AM
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