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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

Scroll down and select country
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)

Thursday, August 4, 2011

New TMAU paper : L-Carnitine treatment and fish odor syndrome: An unwanted adverse effect.

This is a new 'case study' trimethylaminuria paper by a group in France. There is very little to read in the abstract,  but it implies that a patient on Levocarnitine treatment was probably smelling (of fish ?) and they were tested and found to be positive for TMAU. This problem with levocarnitine has been mentioned before in pubmed. It has to be remembered that TMA can be produced from carnitine by gut bacteria.

They use concise terms that in effect describe TMAU1 and the most common form  of TMAU2 (bacterial overgrowth):
TMAU1 :  enzyme deficiency (FMO3)
TMAU2 from bacterial overgrowth :  enzyme saturation

Presumably the paper title should say "unwanted" rather than "unwaited"

[L-Carnitine treatment and fish odor syndrome: An unwaited adverse effect.]
[Article in French]
Rocher F, Caruba C, Broly F, Lebrun C.
Source
Centre régional de pharmacovigilance (CRPV) de Nice, CHU de Nice, hôpital Cimiez, 4, avenue Victoria, BP 1179, 06003 Nice cedex 1, France.
Abstract

INTRODUCTION:
Levocarnitine treatment is usually well tolerated, with essentially dose-dependent diarrhea as the main induced adverse effect.


CASE REPORT:
We report a case of fish odor syndrome during levocarnitine treatment which resolved after levocarnitine discontinuation.


CONCLUSION:
This adverse effect seems to be correlated with excedent carnitine intake and might be expressed when the elimination pathway becomes saturated or in a situation of deficiency enzymatic metabolism.
http://www.ncbi.nlm.nih.gov/pubmed/21481905

So it should be remembered that the TMAU diet probably involves reducing carnitine as well as choline.
wikipedia entry for carnitine

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