Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out

Labels

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

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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

Wednesday, June 25, 2014

PROS and CONS TMAU URINE TEST


a  PATIENT ADVOCACY International campaign to research SYSTEMIC BODY ODOR AND HALITOSIS

A 501(c)3 Public Charity, USA
A Not For Profit LTD Company, England and Wales


BENEFITS OF TMAU URINE TEST
  1. DNA test is expensive and does not indicate whether patient has liver FMO3 enzyme deficiency resulting from liver damage or gut flora excessive production of trimethylamine (TMA).
  2. Easier to collect urine instead of blood from patients far away from lab.
  3. Psycho-social consequences: All human interaction experienced by body odor and halitosis sufferers is compromised at a most basic level, whether it is in the workplace, education, general public or romantic and family life, leading to discrimination transcending the home, workplace and in the general public.

INSTRUMENTS USED AROUND THE WORLD
FOR URINE OR BLOOD TMAU TESTS
  1. Gas Chromatography.
  2. Liquid Chromatography.                  ALL ARE EQUALLY AS ACCURATE FOR TMAU TESTING.
  3. Mass Spectrometry.
  4. Nuclear Magnetic Resonance (NMR).
PROS  &  CONS
TMAU URINE TEST

PROS
1.      When results show that the odorous chemical, trimethylamine (TMA), level is above normal range in the urine, it is indicative that others may detect odor coming from the patient's breath or body. When levels are within normal range, TMA is not a source of body or breath odor.
2.      Less costly than DNA testing.
3.      Assists in determining whether the more costly DNA test is indicated – otherwise, patients might never opt for the more expensive genetic sequencing test.
4.      Screening test measures odorous trimethylamine (TMA) levels regardless of the cause.  It indicates the possibility of whether patient has a genetic condition, liver enzyme dysfunction, or simply an excessive amount of TMA production by gut bacteria.
5.      Screening intervention test can assist physician in determining whether the TMAU odor-management protocol* is indicated. Protocol is unhealthy.  There is no test to guide physicians or patients other than this urine screening test.
5.       TMAU urine test has changed the lives of many patients who, under the guidance of their physician, have managed to control their odor symptoms and now live happier lives without the psycho-social barriers they once experienced before symptoms were controlled.

CONS
1.      Samples can more easily become damaged (TMA turns to gas at room temperature) and thus, may give spurious results.
2.      Test is a screening test, thus possibly resulting in misdiagnosis.
3.      Screening interventions tests are not designed to be diagnostic, and often have significant rates of both false positive and false negative results.




How TMAU urine test results are interpreted:

  • TMAU1 can only be truly confirmed by FMO3 enzyme analysis (difficult because a liver biopsy would be needed) or DNA analysis.
  • TMAU2 must be a diagnosis by exclusion.
  • TMA-oxide can be used as a guide, but is not diagnostic for TMAU2.
  • Therefore, if TMA is increased and TMA-oxide is normal and (as in many cases) FMO3 is not proven to be affected the diagnosis must be TMAU2 by exclusion.
  • If TMA is normal and TMA-oxide is significantly high, suggest a re-test following a choline load.
Nigel Manning, Principal Clinical Scientist
Department of Metabolic Biochemistry
Sheffield Children's Hospital, UK
August 2012
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)



SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.


Please use your credit card to make your donation to MEBO.


Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner


A EURORDIS and NORD Member Organization

2 comments:

Maria de la Torre said...

Regarding the TMAU urine test, when results show that the odorous chemical, trimethylamine (TMA), level is above normal range in the urine, it is indicative that others may detect odor coming from the patient's breath or body. When levels are within normal range, TMA is not a source of body or breath odor.

It is a handy tool to let you know whether you are emitting odor that others can detect. If you believe that your odor level has decreased after following the TMAU Odor-Management Protocol, this test will tell you whether your TMA levels are within the Normal Range.

Jun 26, 2014, 8:24:00 PM
Unknown said...

BOA TARDE,MEU NOME É RENATA SOU DO BRASIL,DESDE 2012 SOFRO COM UM ODOR CORPORAL FORTE QUE CHEIRA PODRE E COISA ESTRAGADA,EU ACHO QUE TENHO TMAU2 PORQUE APARECEU QUANDO TINHA 22 ANOS,AQUI NO BRASIL NÃO TEM MAIS O TESTE,SÓ O GENÉTICO QUE É MUITO CARO,QUERIA SABER SE PODERIA ME INDICAR ALGUM LABORATÓRIO QUE FIZESSE ESSE TESTE.OBRIGADA

May 18, 2015, 4:42:00 PM
Post a Comment