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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 :
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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

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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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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

Wednesday, June 27, 2012

Dimethylsulfidemia: its significance in extra-oral blood borne halitosis

halitosis researchMany topics were presented by MEBO’s experts in our MEBO annual meetup at Miami Beach 2012, and the excitement in the room was palpable as the wide spectrum of topics were presented, from FMO3 and CYPs (P450s), dimethylsulfidemia (DMS), testing programs (breath test and TMAU kits handed out), quality of life and employment issues were presented and discussed. All attendees left feeling hopeful and thrilled to have been a part of such a cutting-edge body odor and halitosis discussions. To make it even more meaningful, to have enjoyed the experience with other sufferers with whom we bonded instantly, was nothing less than euphoric. Our most profound gratitude goes out to all the experts who shared their knowledge pro-bono with us, and whose compassion for our plight is immeasurably appreciated by us all.

In addition to Professor Elizabeth Shephard’s presentation, we viewed the PowerPoint featured above created by MEBO Research’s Scientific Advisor. This PowerPoint presentation is complementary to a MEBO Research paper he is working on for publication, of which a shortened version of its abstract is noted below. We hope that this presentation is only the beginning of great things to come in the study of Dimethylsulfidemia.

Halitosis is estimated to be the third most common trigger for patients to seek dental care. 10-15% of all genuine halitosis cases are attributed to extraoral causes, of which blood borne halitosis appears to be the most common subtype. New evidence suggests that dimethyl sulfide is the most prevalent volatile implicated in extraoral blood borne halitosis. This conclusion was reached in 2007 by Tangerman and Winkel, who proposed a hitherto unknown metabolic condition, resulting in systemic presence of dimethyl sulfide in blood and alveolar breath, by way of explanation for this finding. This potential new metabolic condition remains unnamed and undefined. A new condition would perhaps come as little surprise after the hundreds of new metabolic conditions identified in recent decades following genome-phenome mapping. This paper reviews the knowledge base regarding the behaviour of dimethyl sulfide in physiological systems, and those disorders in which dimethylsulfidemia related blood borne halitosis is thought to have an aetiopathological role. A small amount of speculation is also offered regarding the possible nature of the above-mentioned metabolic condition.

See more articles and posts on sulfur compounds (some are not written in English):


María de la Torre
Founder and Executive Director

A Public Charity
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Anonymous said...

I live in Minnesota, I was just curious is this disorder you can claim disability.The way I understand if you don't test out at 90% or. above your not considered a canidate that you have this tmau.Did I understand this right.If this is the case I will be fired from my job.I'm waiting for batch 8 go get started I'm in that batch.(its only at 7). A y more updates..

Nov 17, 2013, 12:20:00 AM
blogcontributor2 said...

Hi. If you mean TMAU, I am not sure it is classed a disability in the USA or not. Maria will be around later to discuss this. I don't think you can claim disability (yet). You could try claiming due to the mental health effects it has on the person.

As for the 90% mark, all the labs have various reference ranges. One lab has it at around 80%, another 85% etc. The Cleveland Clinic lab test in a different way from other labs which means the % is not relative to other labs.

So currently the % for most labs is just a estimated reference point or an average point. Also some people do the test and get 75% in one test and 95% in another which confuses things further. There is still a lot to learn about TMAU. Also there are people who have 'little reserve capacity' and may do ok in the test but have problems when certain factors kick in, or at certain times when the enzyme functions less good.

Nov 17, 2013, 6:45:00 AM
Maria de la Torre said...

Hi Annonymous,

Hi Anonymous. I think blogcontributor2 has explained it well. Different labs have various reference ranges, and in addition, there are different instruments used by the various labs, which have different reference ranges. The Nuclear Magnetic Resonance instrument used in the Netherlands is used in by various countries in Europe, including Spain, and their results are difficult to compare with the Gas Chromatography instrument used in other countries like NHS in the UK and by the Denver lab in the US. In addition, the Cleveland Clinic, and soon DLE in Brazil, use Liquid Chromatography.

I have created a chart, which includes all the test results of all the tests performed by the Cleveland Clinic, which I update every time the results of a batch comes in, On the bottom of this chart, I show the percentage of positives for Primary TMAU, Secondary TMAU, and negative results. I also show the results of my son (TMAU1 Volunteer), with his permission that shows the results of a person who has been on a low choline diet for 6 years, who did not do a choline load for the test. His results indicates that he has a low TMA level, thus verifying that he is not emitting odor, and that his TMAU odor-management protocol is indeed working for him. However, his ratio between TMA and TMAO indicates that his enzyme is still very weak, thus indicating that he has Primary TMAU, which can only be reconfirmed with a DNA Test.

On the other hand, I am TMAU2 Volunteer, and my results shows that my TMA level was high enough that I was emitting odor, but my TMA/TMAO ratio was low enough to indicate that my enzyme was working within the normal range. Therefore, this ruled out Primary TMAU for me, but showed that I do have TMA odor as a Secondary TMAU sufferer.

Dr. Mercedes Serrano, from Hospital San Joan de Deu, Barcelona, tells us in her webinar that urine TMAU tests gives a lot of false negatives. I believe that many, if not most, experts would agree with her. I think that a good guideline for sufferers to use is to not be 100% convinced with their results, if they are borderline negative, but instead, to test again. MEBO has offered a $50 discount for the second test, in case anyone wishes to do so. There have been sufferers throughout the world, who have tested with the various instruments and got their positive results on the 2nd or 3rd test. This is usually due to cases with intermittent odor.

Regarding disability and disability benefits, I have yet to hear of a case in US, and probably anywhere else in the world, that has received disability benefits specifically for TMAU. There seems to be a great distance between TMAU being classified as a disability (in the US), and qualifying for disability benefits. I personally believe that a sufferer could POTENTIALLY go to Vocational Rehabilitation with a diagnosis and a physician’s supporting ducomentation, to apply for vocational rehab counseling and benefits. Vocational Rehab provides funding for education tuition, books, supplies, and transportation, for a person to “change careers” due to a disability that does not allowing them to continue in their current career. After their new Voc Rehab funded education in a trade school, college or university, is completed, Vocational Rehab provides assistance in job placement. They have a long list of government and private agencies that work closely with Voc Rehab to provide employment to their graduates.

I suppose that each state has its own employer connection. This is the Florida one,, You might want to check out your state’s program. Both my younger son and I have received benefits from Vocational Rehab, not due to TMAU, but for our other respective medical reasons, and we have benefited greatly from it. It is a fantastic program.

Nov 17, 2013, 1:33:00 PM
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