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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

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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
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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

Friday, November 14, 2008

Arkansas Children's Hospital will now allow TMAU urine testing direct for $126 (via a Doctor)

Arkansas Children's Hospital
is no longer performing the test for TMA, as per the
Supervisor, Clinical La/Metabolic Genetics, AKC
September 2013

The Arkansas Children’s Hospital Lab is now accepting adult and children's urine samples for TMAU testing sent directly to them, as opposed to having to send them first to the Mayo Clinic. This must be collected through your Physician or a lab referred by a Physician. Any Physician can order this test by calling this number for additional instructions, at:

Metabolic Genetics Lab
Arkansas Children's Hospital

Certain insurance companies, like BC-BS, have paid for the test which currently costs $126.35. You may want to check with your insurance company to see if they will pay or how to appeal if denied. If denied PLEASE appeal - for everyone’s sake. The majority of appeals are usually approved, and by appealing, we are showing the demand for this test.

Possibly a way to get tested via Arkansas is to take information about TMAU to your MD, including the request papers from the ACH website.

Arkansas Childrens Hospital webpage with requisition form for TMAU urine test
Arkansas Childrens Hospital PDF document Requisition Form and information on their TMAU urine test

Additional information will be forthcoming soon.

As mentioned in our post, Your MD can do the TMAU urine test via the Mayo Clinic test service, the Mayo Clinic is accepting urine samples for TMAU testing only with your Physician’s written order for the Mnemonic Test WILD105 for the cost of $144.20. They then forward the sample to the Arkansas Children’s Hospital Lab where it is analised. The instructions of how to prepare the specimen for temperature requirements and transport method is also included in this post.

If you should happen to be near a Mayo Clinic facility and wish to use their services as well, you may also do so with a Physician referral. You would need to call them in advance and make the necessary arrangements for testing and billing at 800-533-1710 or 507-266-5700, as noted in the post.


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