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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

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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Friday, November 30, 2012

Most Frequently Asked Questions (FAQ) by sufferers, and some Answers (A)

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 through MEBO, 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.
      Nigel Manning, Principal Clinical Scientist
      Department of Metabolic Biochemistry at Sheffield Children's Hospital, UK


  • What if my results fall in the larger black area of the chart results (negative for TMAU1 & TMAU2)? As you can see, the majority of sufferers, approximately 70%, fall in the negative for Primary and Secondary TMAU combined category. In fact, 95% fall in the negative for Primary TMAU category.

    This is a clear indication that a great deal of exploratory research needs to be carried out 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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