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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
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

Monday, February 28, 2011

How people are testing for TMAU with MEBO and Eliapharma


Update 9

Up until last week, MEBO Research and Eliapharma Services were shipping kits and receiving samples domestically within Canada, since Eliapharma Services is in Quebec, Canada, and today, we are working on shipments across the two oceans! As I’ve mentioned in previous posts, I have been learning the complicated ins and outs of shipping biological goods (urine)internationally. Each country is different, and the Harmonized Codes are different inbound and outbound to each country, since the kits leave without biological good and return to Canada with biological goods (human urine).

To play it safe, our first attempt at international shipping was to the North Atlantic Free Trade Agreement countries (NAFTA), which includes Canada, United States, and Mexico. Well, our first 3 international kits arrived at the lab on Friday, 25FEB11. The first shipment arrival of three kits in Montreal-Maribel International Airport presented the opportunity to get to know our Canadian Broker and for Canadian Customs to get to know the MEBO-Eliapharma testing/research program. They recommended I make minor adjustments to my documentation, and it will be “green light” from now on.

I have sent return Air Waybills (shipping labels), Commercial Invoices, and some NAFTA Certificates of Origin to 13 people last night that would be returning a total of 20 samples. In addition to the 12 specimens we already have in the lab, this would make a total of 32 samples, if everyone turns in their kits to FedEx by Tuesday, 08March, a week from tomorrow. Even though the lab says that they will wait to have 30 samples before running the test, we have been told that as soon as we receive all the kits shipped by March 8th, with a minimum of 20-25 samples, Eliapharma will run the test of the first batch with results forthcoming the following week.

Once the results are available, the persons testing will receive their individual results of either Primary TMAU, Secondary, TMAU, or negative for TMAU. MEBO and Eliapharma will then do all possible to assist persons with positive results to provide as much information as possible to their physician in order to assist in their treatment for odor-management. Hopefully, this effort will not only support the odor-management of the individual involved, but will also raise awareness and hopefully promote dialogue in the medical/scientific community.


Many people have decided to take advantage of the very reasonable rate of a one-sample test opportunity, while others have taken advantage of the low shipping cost that allows for more than one sample per kit. A significant amount of people have decided to test using 2 to 3 samples for one person, and while one of their samples involves the customary choline load, some have attempted to use their second and third samples to make sense of and to identify their odor's primary triggers, to attempt to determine how their odor may fluctuate with different types of foods, or simply to understand why others have reacted adversely to them, presumably detecting odor, when the sufferer and/or family members did not detect any odor, etc. Using professional literature as a source of reference, some have used the following procedures to prepare for their second and third sample collection:

  1. Choline load protocol for collecting only one sample is found in the Test Kit Instruction Forms, Condensed version, and Expanded version.

  2. For persons doing 2 samples, after having been on a low-choline diet for a long time, collecting one sample BEFORE starting the choline load, and the second sample after consuming a very high choline load for a few days, to compare the results.

  3. For those doing three tests, they have had the opportunity to be more creative in their quest for self-awareness. Some tested the Three main protocols of TMAU diet, as discussed in the strategies for the treatment of trimethylaminuria:

The persons who decided to test how these theories applied to their own bodies did so by first doing the high choline diet using the chart linked to in MEBO’s Blog (right sidebar) making sure not to consume TMA-rich foods for a few days, then taking the first urine sample, followed by a cleansing protocol and cardiovascular exercise.

The second urine sample followed the consumption of TMA-rich foods ( fish, lobster, shrimp, tuna salad [without eggs], or any other seafood) while maintaining a very low choline diet, followed by another cleansing protocol.

The third sample consists of eating brassicas/indoles for a day or two followed by the third urine collection.

It will be very interesting to see the outcome of the various strategies sufferers have decided to do. Some people can be very creative in their efforts to better understand their body’s production of odor. There will be much discussion amongst ourselves in the forums and meetups and with experts as we go learning about ourselves, while ALWAYS UPHOLDING AND PROTECTING THE PRIVACY OF EACH PERSON TESTING, as agreed upon in the disclosure section of the MEBO-Eliapharma Trimethylaminuria Urine Test Requisition and Disclosures Form.

And this is only the beginning! This is how people have been testing; and soon, everyone around the globe will have the same opportunity to be creative and test for themselves all the theories published by experts to see how it applies to each one individually. Looking forward to many discoveries ahead!

At this time, we still have people in Asia, Australia, Central, and South America, and Europe still on the waitlist, VERY PATIENTLY waiting for me to get all the shipping documentation details required from their respective countries. Since I’m basically a perfectionist in these matters because I understand the importance it represents to each person testing, I prefer not to rush through this process, and truly appreciate the kind patience of everyone involved. It is becoming easier as I progress in this venture, and things should be advancing faster as we go along.

I want to thank everyone who has participated in our new Public Charity’s MEBO TESTING PROGRAM, as we move forward in leaps and bounds to find answers and solutions for ourselves and our children!


If you would like to test in our
MEBO International TMAU Testing Program,
please fill out the following,

MEBO-Eliapharma TMAU Test Requisition/Survey Form

María de la Torre
President and Executive Director


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