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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
EURORDIS and
NORD Member Organization
See RareConnect
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

Tuesday, May 19, 2009

TMA and hydrogen sulfide odor-producing bacteria in the gut and or vagina

In her interview posted in this blog of March 24, 2009, Cass Nelson-Dooley, M.S, Clinical Consultant at Metametrix Clinical Laboratory, with contributions by Mr. Tony Hoffman, tells us of the very important role of anaerobic bacteria that dwell in the colon or the vagina that produces smelly compounds like trimethylamine (TMA) and hydrogen sulfide, as opposed to them being products of human metabolism.

The first thing to do is lower protein intake and improve protein digestion to reduce undigested nitrogenous substrates (amino acids) that must be present to form ammonia.A very small percentage of the human population is diagnosed with Primary Trimethylaminuria, which is caused by a genetic disorder. Yet, many people who test negative for TMAU have the same or similar odor as a person with TMAU. Moreover, persons who test positive for Primary TMAU don't smell only of fish but also of other odors as well. This is because bacteria is the culprit that produces multiple types of volatile organic compounds (VOCs). As Cass Nelson-Dooley points out in her interview,

...The more smelly compounds like trimethylamine and hydrogen sulfide are not products of human metabolism, but they are produced by several bacteria under certain conditions. They tend to be strict anaerobes that could dwell in the colon or the vagina.


Question:

Some feel that trimethylamine can produce a wide range of odors. Do you think trimethylamine could cause the wide range of gut smells on its own

Answer:
No. However it can be a component in complex mixtures of products that are responsible for the varying odors among individuals.


It is for this reason that the National Institutes of Health recommends an odor-reducing management protocol for TMAU in their websites,

Genetests.org page on Trimethylaminuria
Rarediseases.info.nih.gov: What treatment is available for trimethylaminuria?

which in addition to a low choline diet and vitamin supplements, they also recommend the following:

Sequestering of trimethylamine produced in the gut:
• Activated Charcoal: 750mg twice daily for 10 days
• Copper Chlorophyllin: 60mg three times/day after meals for 3 weeks

Suppression of intestinal production of trimethylamine: A short course of antibiotics to modulate or reduce the activity of gut microflora, and thus suppress the production of trimethylamine.
Cass goes on to say in her interview that,

Question:

There is a 'diagnosis' of 'Secondary TMAU', where the enzyme involved is deemed fine, but the person has too much trimethylamine. Do you have any suggestion as to how to kill off the TMA-producing bacteria in particular?

Answer:

The first thing to do is lower protein intake and improve protein digestion to reduce undigested nitrogenous substrates (amino acids) that must be present to form ammonia. Perhaps water or juice fasting could be beneficial in these instances as it can change the microbial content of the gut. If you don’t feed the colonic bacteria, they can’t grow and produce strange products.
Question:

Some feel that trimethylamine can produce a wide range of odors. Do you think trimethylamine could cause the wide range of gut smells on its own?

Answer:

No. However it can be a component in complex mixtures of products that are responsible for the varying odors among individuals.

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