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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts



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

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
NORD Member Organization
See RareConnect 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

Tuesday, November 25, 2008

Nine month-old boy with body odor due to adrenal hormone or metabolic disorder

body odorAccording to one of our polls found on the sidebar of my blog entitled, 'bloodborne BO : when did it start?', of the 233 sufferers that have participated to date,
18 (7%) say it started from birth through 6 years of age, and
23 (9%) from the age of 7 through 10.
This means that 16% of the 233 participants developed body odor before puberty.

Here is a post in the 'Ask a Doctor Forum' of MedHelp, in which a mother asks a Pediatric Endocrinologist, Deanna L Aftab Guy, MD, Vanderbilt Children's Hospital, Nashville, TN, about her 9 month-old son who has bad armpit odor.

Dr. Aftab Guy's reply is that, "Body odor can be due to adrenal hormones or possible metabolic disorder..." She recommends in her answer to the mother of this 9 month-old boy with bad armpit odor to consult a geneticist who would usually workup metabolic disorders with a simple urine and blood work, if all previous tests they have done are normal.

TMAU is a metabolic condition, and there may be other body-odor producing metabolic conditions yet to be identified, as currently believed by some scientist. In addition to metabolic conditions, there may be hormonal problems that may be the either the sole cause of body odor or contribute to a metabolic odor sufferer. As sufferers, we can raise the following questions to the scientific and medical community,

• How would a metabolic condition and a hormonal condition interplay with each other, if at all?
• Are they both from the same genetic pathway, and if so, a genetic mutation would consequently disrupt the function of either one?
• Do hormones affect the malfunction of metabolic processes, or
• Does an increase of volatile toxins resulting from a metabolic deficiency affect glandular function?

It would be interesting to have answers to these questions.

related links on medhelp forums:
Fecal odor sufferer, 2002. They think it's from their anus
Fecal odor sufferer, 2003


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