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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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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
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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

Thursday, November 6, 2008

Yesterday's Women's Conference Call raised many questions

We had a very informative Women's Conference Call, and I would like to thank all the ladies involved. In this call, we raised the question of why it is that sometimes our odor is intermittent as it comes and goes throughout the day, based on other’s reactions and comments as well as on our perception of the odor. We also raised the question of why it is that throughout the day, our odor type may vary. These are some of the thoughts we shared on these topics, and I’ve included references to some of the posts in this blog and to other sources for additional information and reading.

In our 3 hour conversation, we raised the questions whether intermittent odor as well as varying types of odor could be a result of more than one enzyme, such as FMO3 as in the case of TMAU, including but not limited to other FMOs, CYP450s, other phase1 enzymes and perhaps phase2 enzymes (as well as other cell enzymes both known and unknown). There are usually 6 CYP450s regarded as 'big players' in xenobiotic metabolism, with 4 of them regarded as very polymorphic. We made reference to the post in this blog, Aruns opinion on body odor and halitosis, in which he says, “… I believe these are in fact enzyme disorders (yes, more than one!) which bear some similarities to Trimethylaminuria (Fish Odour Syndrome) in that they are systemic but they have yet to be documented. This means that they do not have a name yet!!” Also in Arun’s post, Arun speaks to us about his past studies and current scientific study of BO, he states that, “…we don't all have the same symptoms but there seems to be a common metabolic pathway which is defective!”

We also discussed the possibility of hormones influencing a fluctuation in the levels of the various enzymes, especially during women's monthly cycle, pre-menopause, and post-menopause. This fluctuation in enzyme levels may range from increasing the levels producing too much load, to inhibiting the enzyme levels, thus failing to fully metabolize different compounds throughout the day. In this manner, as the hormones levels change, they may affect the various enzyme ability levels, and depending on which enzymes may be affected at the time, it may produce varying types of odors, also depending on the foods we eat and the environment in which we find ourselves at the time. For example, please see this paper regarding 'transient TMAU' and menstruation by Dr Cashman et al: (Note: some of those mentioned in the paper were only 'carriers'.)

In addition, we discussed the possibility of there being other triggers to our varying enzymatic response such as the environment, emotions (which are chemicals), diet, and medications. This part of the conversation was initiated by one of the women telling of her horrific experience at the beauty salon as she was having her hair colored, and the extreme reaction of her hairdresser to her odor. It appears that as the chemicals touched her scalp, especially when sitting under the warm hair blower, the odor became very strong. We made mention that perhaps the oils and the sweat in her scalp could have had a certain concentration of volatile compounds that when mixed with chemicals in the hair coloring produced an even stronger odor.

In the environment, we come across allergens, chemicals such as pesticides, and air pollution caused by car exhausts that enter our bodies as we breathe and that are absorbed through our skin, amongst others. In our post in this blog, Xenobiotic metabolism enzymes : an attempt at an explanation, we raise questions in an attempt at understanding the function of the xenobiotic metabolic enzymes (which include the CYP450 superfamily), also often referred to as ‘drug metabolism enzymes,’ that mainly deal with external chemicals (as well as internal), sometimes neutralizing them, sometimes activating them (for instance active compounds in drugs), amongst other functions.

We most certainly did not arrive at any major discovery or a cure, but we did raise these questions of possibilities, upon which I have researched a little more and have elaborated in this post. It would delight us if any and all scientists and experts research our questions further.

And as women often do, we did discussed ways of dealing with all this at an emotional level, as we comforted and encouraged each other, as we had done in the previous Women’s Conference Calls.


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