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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
MEBO Karen
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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

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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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

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.

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