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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

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

Thursday, October 9, 2008

Our Women's Conference Call last night - Questions and topics raised

Paraphrased questions raised and topics discussed:

  • Are there signs to help me know when I smell?
  • Why could there be a residual odor in my breath, underarm, feet, or groin area after my strong odor is controlled with diet and supplements?
  • Why pictures and audio/video recordings in the forum and blog?
  • Thanks to Linda from Norway for her TMAU Cookbook - let's help her out!
  • I would like to thank all the ladies who participated in the Women’s Conference Call last night. We discussed very interesting topics, including some of the sources of odor, bromhidrosis, halitosis, and the psychological impact of our pics/audio/video recordings posted in the forum and blog. We also decided to change the time of future calls to 9:00p.m./EST instead of 8:00p.m./EST because 8:00p.m. is too early for the ladies in the Central and Eastern time zones.

    We began the call with a discussion of the benefits of seeing and hearing each other in pictures and audio/video recordings in the MSN forum and in this blog, as well as our ongoing process of writing anthology and my interviews of various sufferers in my blog. All this is helping our community to see the real persons behind the odor. With all the social rejection a BO condition gets, it slowly but surely eats away at what should otherwise be a strong and positive self-image. On the other hand, seeing all the talent and beauty showcased in these pics/audio/video recordings, we begin to change that negativity to a strong sense of a positive self as a community and as individuals.

    One of the callers addressed a common concern that all sufferers share, and that is ‘how do we know when we smell to others when we can’t smell ourselves sometime, and our family members don’t always smell us?’

    In our exploration of this topic, this caller pointed out that she doesn’t perspire significantly at all, yet she feels that her skin gets cold and clammy and looks unhealthy and pale. Since this caller says that she was tested with Dr. Cashman and diagnosed as having a mild case of TMAU, then it stands to reason that some of the smelly compounds of TMAU has to be coming out in the very little amount of perspiration that comes with the clammy ‘look’ and ‘feel’ she perceives to have. I told her that my son's skin also gets cold and clammy when his odor kicks in. His odor would also come out through the histamine in his allergy rashes on his skin.

    This led to the discussion of how the high pH of TMA can produce a too high alkaline environment under the arms, feet, mouth, groin, and other areas, thus throwing off balance the normal microbial ecology, resulting in an over-growth of odor producing bacteria, as explained by Arun in his post, . We touched upon how to bring down the pH in the skin and mouth with natural remedies, such as feminine washes (not only for vaginal use but also for other parts of the body) and diluted lemon juice in the mouth to keep it at a healthier pH level conducive to normal and healthy micro-ecologic levels. and TMAU and acidic ph washes : are feminine washes an option?

    All the ladies on the call and the whole community would like to extend our most sincere gratitude to Linda from Norway for her very kind and generous efforts in compiling a TMAU Cookbook. Everyone is encouraged to send her at least one good recipe to help her with this task. As Arun tells us in his MSN post, “[the] Deadline for recipes is December 1st, email Linda at . We want everyone to be a part of this, so send us what you got. This is a great opportunity not only to help yourself but all TMAUers around the whole world.”

    As you can see, we have been putting some recipes in our new ‘Diet & Recipes Board’ in MSN, so please contribute there as well. Linda, you can use any of those recipes as well for your book.

    Thank you Linda! You are a very kind person. I will be emailing you very soon.


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