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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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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

Friday, August 31, 2012

First Batch TMAU Test Results received by MEBO Research

Most frequently asked questions (FAQ) by sufferers:


  1. Where do I begin to find out what causes my odor/halitosis condition, and how can it be cured?
  2. Do I have Primary TMAU (TMAU1)
?
  • Do I have Secondary TMAU (TMAU2)?





  • What about the 70+% who test negative for TMAU1 & TMAU2? what do they have?





  • Could a microbial imbalance in my gut be the cause of odor symptoms?





  • Could I have more than one FMO3 deficiency, which then would compromise multiple metabolic pathways resulting in an odorous chemical buildup in my body?





  • What about women’s needs – hormonal changes, vaginal microflora alterations possibly due to changes in pH in mucosal tissue and FMO3 deficiencies?






  • In an effort to find answers to these questions, sufferers are usually recommended to do the following:
    1. Consult with your physician and/or dentist to rule out the already known causes of these symptoms.
    2. When your physician cannot find a cause, the TMAU Test is recommended. If you decide to do your TMAU Test, which MEBO Research makes available to sufferers around the world, your urine sample will be analyzed with a High performance liquid chromatography (HPLC).
    3. What would TMAU Test results performed by HPLC look like? See


    of 64 patients who have done the TMAU Test with HPCL. Please note that the three columns, TMA, TMAO, and TMA/TMAO RATIO, have been individually sorted from highest to lowest results, and therefore, reading across a row would not represent the results of any one particular patient.
  • Where would your figures fall in the 64 patient TMAU Test Results analyzed with HPLC? If you would like to get answers to some of these questions, you can fill out the



    to obtain cost information of the test ($150) and shipping cost to/from your address. There would be no additional expense for your test experience after this initial payment - no additional fees or hidden costs.

    How 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.






  • What if my results fall in the larger black area of the chart results? As you can see, the majority of sufferers, approximately 70%, fall on the negative for Primary and Secondary TMAU section. In fact, 95 to 99% fall in the negative for Primary TMAU. This is a clear indication that a great deal of exploratory research needs to be done to discover other causes.

    MEBO is committed to pursuing research, especially exploratory research, the type of studies that are merely formative, for the purpose of gaining new insights, discovering new ideas, and increasing knowledge into the various causes of uncontrollable body and breath odor conditions.



  • María

    María de la Torre
    Founder and Executive Director

    A Public Charity
    www.meboresearch.org
    www.brasil.meboresearch.org
    maria.delatorre@meboresearch.org
    MEBO's Blog (English)
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    A EURORDIS and NORD Member Organization

    4 comments:

    Anonymous said...

    Thank you for bringing TMAU testing to sufferers in countries where this test would never have been offered otherwise.

    Sep 5, 2012, 12:56:00 AM
    Anonymous said...

    I'm confused. If TMAU can only be confirmed by DNA analysis why bother with the urine test?

    Sep 8, 2012, 12:17:00 PM
    Maria de la Torre said...

    TMAU can only be confirmed by DNA analysis, but it is a very expensive test. Most people, approximately 70%+ get a negative result for both, Primary and Secondary. So, that's 70%+ people who didn't have to spend so much money on TMAU Testing.

    Sep 11, 2012, 7:01:00 PM
    Anonymous said...

    Has anyone ever looked into the possibility that even though you test negative the DNA analysis confirms that you do have TMAU?

    Sep 30, 2012, 9:45:00 PM
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