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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

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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, October 8, 2013

Odorous chemicals produced in the gut

There is some confusion about whether fecal matter is flowing in the bloodstream to produce body or breath odor conditions; it is not. It is common knowledge that if fecal matter, with all its millions of microbes, enters the bloodstream, it could potentially cause sepsis and possibly be fatal. That's why doctors rush a patient to surgery when there's a ruptured diverticulum or when the appendix ruptures. Of course, these cases are usually accompanied by infection, but if the microbes in feces enters the bloodstream, one would be in serious life-threatening problem.

odorous chemicals are produced by gut microbes when the microbes take up the food we eat, release odorous chemicals, that then pass through to the bloodstream.
After listening to the webinar series hosted by RareConnect, and in particular Dr. Danielle Reid's presentation, which addresses gut microbial production of trimethylamine (TMA) and the expert interviews in this blog and other sites, and reading articles on TMAU and other body/breath odor conditions, one can determine that the odorous chemicals are produced by gut microbes when the microbes take up the food we eat, release odorous chemicals, that then pass through to the bloodstream. This is what causes systemic body and/or breath odor. Body odor can also occur in persons who have a fully functional FMO3 or other metabolic enzymes, when faced with an overproduction of odorous chemicals by gut microbes, as in the case of (but not limited to) Secondary TMAU. Nonetheless, in cases of FMO3 or other metabolic enzyme deficiencies, the metabolic enzymes cannot catalyze the chemical reactions to change the odorous chemicals into its non-odorous state, so the odor will become that much more intense.

An EXAMPLE would be in the case of TMAU, and there are other metabolic processes involving other odorous chemicals. If one's gut bacteria produces a very high level of the very odorous chemical, trimethylamine (TMA), and the FMO3 metabolic enzyme can handle the load, then the metabolic enzyme cannot add an oxygen molecule to the odorous chemical to convert it to a non-odorous chemical, trimethyl-N-Oxide (TMAO). So free odorous TMA remains in the bloodstream and the body's cleansing organs (kidneys, lungs, skin) try to expel it from the body. When it leaves the body, that's when others can smell it.

This is why bathing is only a temporary, though much needed, solution, and special soaps, shampoos, and cleansers are needed. The body will continue to keep trying to expel free TMA, or any other odorous chemicals that have not been metabolized into non odorous chemical(s), until the blood it clean of it (them).

HOW TO CONTROL ODOR?


This is why so much focus in the various protocols is directed at the gut. A very strong focus is given to diet. Basically, the goal is to not feed the microbes with the foods they use to create odorous chemicals. Charcoal adsorbs chemicals in the gut and excretes them in feces, so they won't pass to the bloodstream. And this is why attention is given to help the cleansing organs expel odorous chemicals by drinking plenty of water, so that the kidneys can wash away the chemicals. Doing cardiovascular exercise is extremely helpful in helping the lungs breath out the chemicals it picks up in the alveoli when the heart is pumping faster and blood-flow moves quickly through the alveoli, where gas exchange takes place in the capillaries. Cardiovascular exercise helps remove the chemicals in perspiration and oil glands. This is then washed away with bathing. This cleansing process takes as long as it takes to finally remove as much odorous chemicals from the body that normal human olfactory systems detect. If the diet is done correctly and new odorous chemicals are not produced in excess, so the metabolic enzymes are able to convert them to non-odorous chemicals.

At this time, there is research taking place for a therapeutic (medicine), "A therapy for body and breath malodour disorder Trimethylaminuria (TMAU)". This is taking place at the University College of London by Principal Investigator, Dr. Elizabeth Shephard, with the £358,000 GBP (an equivalent to about a half million dollars) awarded by the UK Medical Research Council (MRC). The Trinzyme Project was created as a fundraising tool to help with this research so that the therapeutic will be at a low cost to all sufferers around the world.

We as a community of sufferers, do hope that this therapeutic will change the whole odor-management protocol as we know it today, so that sufferers can have greater control over their odor conditions and thus lead more normal lives.

María


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María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
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