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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

Tuesday, February 20, 2018

Recommendations: Initiating odor-management measures

Irene Gabashvili, PhD., MEBO's Scientific Director, advises us on how to initiate odor-management, particularly when the cause of uncontrollable odor has not been determined, until formal research provides us with more targeted, Precision Medicine options and guidance.

It is important for sufferers try NOT to develop a fear of food. Most sufferers do not have adverse reactions to MOST foods. So, please, let's not become someone who believes he or she reacts negatively to every food. Let's stay healthy as we pursue research that will bear answers and direction.


First find your problem foods: fish,beef, eggs, brussel sprouts (choline), dairy, shellfish (lactose and taurine), fructose, added sugars? Make sure you are not deficient in vitamins and minerals: B2 vitamin enhances FMO3 activity, zinc helps the digestive system, magnesium is involved in energy metabolism. You might need antibacterials, antifungals or probiotic foods to improve your gut microbiome. Use acidic soaps (with salicylic acid) and pH balanced personal care products. Adding small amounts of white vinegar when washing your clothes could be also helpful.

It's important to improve gut barrier function, but you will still need to rebuild the microbiome too. it's possible to start tolerating problem foods again, but it will take time. FEB 20, 2018.

Below is a link to numerous posts on Irene's work in our community. Please scroll down and click on Older Posts at the bottom of each page to go to the next page in order to see all the posts:



Initial results of MEBO's clinical trials with Irene being the Principal Investigator:


...one of our tests [NCT02692495] was able to clearly separate those groups, bad breath and body odor, based on the intestinal permeability test. Those with increased permeabilidad tended to be exhibiting body odor, and those with decreased [intestinal permeability] compared to normal showed to be exhibiting bad breath.

Definitely this test cannot be used to diagnose body odor, but at least it can show and demonstrate that whatever the sufferers is actually exhibiting is real. They [the tests used in the study] can very accurately pinpoint the source, which is also very important...

The odor are also very reliable symptoms...sour odor symptoms [are] like garbage, fishy ammonia, acetone, are odors associated with alcoholism, and fecal diarrhea and generic fecal odor. The sweet group symptoms mostly include sulfur smells like sulfur, rotten vegetables, rotten eggs, cheesy sweaty, fecal, sewage, smoke of gasoline burning...and the PATM condition with a lot more interesting observations, but not much time to talk about it...


The sweet group had more added sugar in their diet. They were more likely to experience improvement in symptoms when they reduced sweet intake. The participants from the sweet group were more likely to improve with probiotics, but of course, it is more complicated than that...


http://www.meboblog.com/2018/02/results-mebo-clinical-trial-published.html

Thank you Irene for your advice and everything you do for our community!

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)



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A EURORDIS and NORD Member Organization

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