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

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MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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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

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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

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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

Sunday, August 17, 2008

Parasites: ruling them out

not to be used as advice
post refers to intestinal parasites only.
tests referred to are clinical laboratory tests

With bloodborne body/halitosis, the 2 obvious lines of investigation would seem to be the detox enzymes, and the gut ecology (and gut function). Since bloodborne body odor is an unknown/unrecognised condition (apart from trimethylaminuria and one paper on dimethylglycinuria), it would seem that ruling things out would seem an option. It would be better if these sorts of tests were done as a group ina co-operative way with the intention of defining the syndrome (for instance as medical studies are done), but this doesn't currently seem an option.

With regards gut ecology, one area seemingly worth investigating would be factors that cause gut dysbiosis. Most fecal body odor sufferers seem to feel they have a gut issue, for instance. The 3 groups of potential pathogenic (disease causing) microbes would seem to be: bacteria, fungi, parasites.

This post will look at parasites. On the one hand, they are probably understimated, on the other hand it seems unlikely they are a 'necessary' part of, for instance, fecal body odor 'syndrome'. There are 2 types of parasites in general; helminths and protozoa. Helminths are what we think of as 'worms', whereas protozoans are single-celled. There are all sorts of both types.

Also, with regards being 'pathogenic', some are easily regarded as such (probably termed category B pathogens), whereas some are regarded as 'low-grade' pathogenic or even regarded as being 'asymptomatic' (not disease causing) in many carriers, or their 'pathogenic' classification is still debated (for instance, the protozoa blastocystis. Giardia has not been unquestionably regarded a pathogenic parasite until the last few decades). You can think of these classifications as the same way scientists currently debate global warming.

There are tests available without seeing a doctor to rule out parasites. However, one test cannot be deemed as totally reliable on the 'false negative' side (false negative means the negative may have been wrong). It could probably be assumed false positives are unlikely. It must also be understood that the established medical system may not test for 'grey area' parasites (e.g. 20 years ago they wouldn't have tested for giardia. They wait until they are officially deemed 'parasites' by their established peer group), whereas more forward-thinking labs will (for instance, blastocystis). So if you tested, it would be wise to know what they were looking for.

Whatever anyone does regarding this, they do so under their own responsibility.

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