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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
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at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

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
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

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
NCT02683876

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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Friday, February 1, 2013

Question in webinar, "define Bacterial Overgrowth"

Today we had the pleasure of the intellectually stimulating webinar presentation from Drs. Danielle Reid, Paul Fennessey, and George Preti. I particularly found Dr. Reid's current research finding to be very interesting indeed, and would like to encourage sufferers to support her in this endeavor. The whole community is looking forward to seeing more details of this presentation soon.

Since our community includes sufferers and TMAU experts from all parts of the world, there seems to be a possible misunderstanding of certain terms, even though I believe an attempt has been made to discuss the same phenomena of certain bacterial species producing trimethylamine (TMA) from choline by all.

The question remains, why do non-sufferers have lower TMA and lower TMAO levels than sufferers, regardless of whether there is a metabolic enzyme deficiency or not? This question addresses the amount of production of TMA in the gut.
Some people were asking in today’s webinar about “bacterial overgrowth,” and I wonder if sufferers from different parts of the world understand this term to mean different things. I think that persons who use this term, possibly including, but not limited to, persons selling “detox" products, are referring to certain anaerobic TMA-producing species of bacteria.

As noted in the webinar transcription of Dr. Lachmann’s approach of treatment and follow-up monitoring for TMAU, he discusses the treatment currently used in the UK for both, Primary and Secondary TMAU. Secondary TMAU occurs when there is an increased amount of certain bacterial species that cause a very large production of TMA in the gut from choline. It uses as reference to the fact that the gut microflora of some persons (non-sufferers) produce less TMA from the same amount of choline ingestion. The question remains, why do non-sufferers have lower TMA and lower TMAO levels than sufferers, regardless of whether there is a metabolic enzyme deficiency or not? This question addresses the amount of production of TMA in the gut. He explains the role of bacteria in the gut to produce trimethylmaine (TMA) from choline, as was presented in Dr. Elizabeth Shephard’s webinar presentation, and I believe also presented today in Dr. Danielle Reid’s webinar presentation (I’d have to look at today's presentation again to be certain).

I believe that the confusion of terms, whether “bacterial overgrowth” or the gut being populated by more abundant colonies of anaerobic bacterial species in some persons and not in other persons, are in essence addressing the same phenomena of excessive TMA gut production that overburdens metabolic enzymes. Basically, it is an attempt to express what experts seem to be describing in all the webinar presentations, such as in an excerpt from Dr. Lachmann’s webinar presentation,


The gut…is full of bacteria and contains a mixture of bacteria and some of the bacteria are producing TMA from choline.

Now if we knew exactly which bacteria they were, and we had tools that were specific enough to go in and specifically take those away and leave everything else behind, now that would be the ideal treatment. But unfortunately, we are not in this position, for two reasons,
  1. Actually, we don’t know which bacteria are actually producing TMA. We know roughly which group of bacteria they are, they are called the anaerobes, but we don’t know exactly which ones, and that’s a big group of bacteria.
  2. Even if we did know which they were, we simply don’t have the tools that are specific enough to go in and take that one or two species of bacteria and leave all the rest behind.
I welcome comments to this question, and you can bring forth your candid opinion by clicking on the comment link below.

María

María de la Torre
Founder and Executive Director

A Public Charity
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1 comments:

Anonymous said...

Thank you for your enlightening article and for creating this website. I have severe halitosis and have suffered with this humiliating condition since childhood. I have seen several specialists throughout the years who have basically told me to use mouthwash and deal with it. Thanks to your website (especially), I am seeing that I am not alone in my struggle and there are doctors and advocates who are working tirelessly to find a cure and or help TMAU sufferers effectively manage their symptoms.

Oct 14, 2013, 12:08:00 PM
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