Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out


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

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

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

Popular Posts (last 30 days)

Upcoming get-togethers

Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

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

Saturday, April 9, 2011

Abstract from Nigel Manning : B2 responsiveness in a TMAU patient

Abstract from Nigel Manning : B2 responsiveness in a TMAU patient

This is an abstract paper (pre-publication) done by Nigel Manning, Principal Clinical Scientist, Dept of Clinical Chemistry, Sheffield Children's Hospital, and others at the same hospital.

It is a case study of a patient with homocystinuria who was on betaine therapy and then over around 10 years started to have a 'fish odor' complaint. The patient was found to have the 158-308 DNA combo that can cause mild genetic deficiency of FMO3 enzyme. The urine sample had very high levels of TMA (392 mmols/mol).

It was decided to try B2 therapy and the TMA levels were checked 5 times over 240 days. In the graph, it can be seen the TMA levels dropped dramatically, eventually being 17 mmols/mol. This is still above Sheffield's normal saturation level of 10.8, but a vast improvement. Also, the % of TMA converted to TMAO  went from 7% to 83%, but this could be due to reducing the level of TMA-producing bacteria alone.

Presumably this study was carried out because people with homocystinuria have to take high doses of betaine. Betaine is known to cause high levels of dimethylglycine, which is recorded as causing a fish odor.

The TMA levels dropped, but we are told the TMAO levels did not conversely increase, rather, the overall TMA + TMAO level dropped. So it cannot be ruled out that the gut infection was reduced rather than B2 causing increase in TMAO function ?? Since high betaine levels are used for another disorder in this study, this suggests perhaps FMO3 function was increased. There still remains a few questions about B2 responsiveness that need to be checked.

All the same, it is an interesting study and B2 responsiveness would make a great study for TMAU. In this study, they used 100mg B2 twice a day.


Post a Comment