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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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BO Sufferers Podcasts

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Petitions

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
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org 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

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

Friday, January 13, 2017

Update: MEBO Metabolomic Profiling Pilot Study

UPDATE:  METABOLOMIC PROFILING PILOT STUDY

Last week I called the PhD, Research Coordinator of our MEBO Metabolomic Profiling Study at the Metabolomics Innovation Centre & Wishart Laboratory, University of Alberta, Canada. We had our first private phone conversation for almost an hour, and we bonded well. Previously, our phone conversations were conferences calls involving the MEBO team and her research lab's team. She understood much better what the program was about and what our specific needs are, since she took over this study a year after it was launched. She said she wanted to talk with Dr. Wishart to get instructions on how to proceed. This is what the decided to do moving forward,


The final count of usable samples received for this study is 17. I discussed the project with Dr Wishart and he suggested we start with 3 assays:

1) DI-MS http://www.metabolomicscentre.ca/services/1

2) NMR http://www.metabolomicscentre.ca/services/2
3) GC-MS Organic Acids assay http://www.metabolomicscentre.ca/services/25

I have attached a link to our website for each assay so that you can have a look at the range of metabolites that will be covered.

Our MEBO Scientific Director, Irene Gabashvili, Ph.D., who is going to attempt to identify various causes of breath/body odor and find solutions to them, wrote the following response to this update,


Your NMR assay lists most metabolites we tested in the past - at least half a dozen of them were found at higher concentrations in blood, one (Indoxyl sulfate) was found to be elevated in urine in up to 50% of our patients. Perhaps we could start from this assay? Other tests also sound interesting.

I'm glad to see that using a Nuclear Magnetic Resonance, (NMR) instrument, the study will search for many metabolites and note their levels, some of which are odorous at some point of their metabolic pathway. After the raw data is obtained, the lab will use a control group of over 3,000 subjects who do not have odor issues. I think this study is very promising, and may offer our community solutions, not only to TMAU, but to other conditions, which sufferers of Primary TMAU or Secondary TMAU may also have.

We at MEBO Research are most grateful to the lab staff and to Dr. Irene Gabashvili for working on this pilot study without incurring cost to MEBO.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
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A EURORDIS and NORD Member Organization

6 comments:

Stephanie said...

His is honestly the most promising research I've heard about! Very exciting. My own odor has never been 'fishy'... at least not that I've heard of. And tma was only slightly elevated. Would love to know what metabolites are causing issues for many of us. For me, the odor is transient which means it probably has something to with Diet (which has not been helped at all by the low choline Diet) fingers crossed!

Jan 13, 2017, 3:59:00 PM
Carol W. said...

Indican (indoxyl sulfate) is a product of tryptophan metabolism. Tryptophan is a precursor to serotonin. ..... I'd be looking at hyperpermeable gut lining ("leaky gut") coupled with high commensal clostridia spp. (via American Gut Project); these bacteria slow gut motility, draw water out of the intestine, create a high energy harvest from diet (necessitating fewer calories to maintain weight), and make serotonin. If serotonin is high, I'd expect indicant is high. .... I'd also be looking at protein digestive enzyme levels, since if protein is not well digested, it putrefies in the intestine, which would be exacerbated by slow gut motility. .... I'd also look at skatole levels. .... And I'd be testing for celiac disease (genetic risk, fecal fat % > 20%, gliadin Ab, and tissue transglutaminase 2 Ab (will only go high in longstanding cases of celiac). Celiac tends to have leaky gut..... I'd be looking at other causes of leaky gut such as stress, high cortisol, alcohol, NSAIDs, capsaicin from chiles and hot sauce, food lectins, wheat, whole wheat, allergic foods, processed foods, saturated fats, too much fat in the diet in general, emulsifiers, etc.

Jan 14, 2017, 2:50:00 AM
Carol W. said...

Adding on, I'd also look at p-cresol which comes from tyrosine metabolism, and can also be related to proteus vulgaris and proteus mirabilis gut bacteria.

Jan 14, 2017, 3:24:00 AM
Anonymous said...

Es muy emocionante e interesante,saber que habrá una solución para muchos problemas de mal olor,yo por ejemplo tengo hipermetioninemia aislada,me provoca mal olor corporal y halitosis severa,he hecho la dieta correspondiente de mi enfermedad sin resultado alguno,mi mal olor continua,mil gracias por su valiosa investigación de todos nosotros los enfermos de diferentes enfermedades que provocan mal olor,muchas gracias!!!!

Jan 14, 2017, 9:32:00 AM
alice said...

Please consider:
acetate levels in urine
citrulline
dimethylamine
putrescin derivates
indole-3 derivates you already got

Jan 18, 2017, 3:39:00 PM
Anonymous said...

If we find a certain chemical that is common how do we even find a cure? Do we create some sort of tablet to neutralise it?

Jan 27, 2017, 7:31:00 AM
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