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

Additional info:
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
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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

Monday, October 13, 2008

ways (mostly potentially) to detect odorous chemicals in your breath or body fluids at home

One of the most upsetting (and confusing) parts of bloodborne body odor or halitosis is that the sufferer normally cannot smell themselves (often nor can 'loved ones' too, especially family). This also means they cannot monitor the problem and follow the pattern. It is the cruelest of ironies.

It would be very helpful to at least be aware of the problem through some sort of practical sensor. This is a vague list of potential theoretical sensors, probably in the future rather than currently. The post is mainly to promote discussion. Please let us know of any other ideas.

Test strip papers (urine testing. possibly saliva testing):
Probably the most useful likely source would be to do with the fishing industry and pet aquarium products. There are (for example) hydrogen sulfide test paper strips, but likely to be not sensitive enough for detection in human urine.

TMA (trimethylamine) test strip papers (like litmus test papers):
There was a patent for such a product intended for the fish-industry, but was scrapped due to lack of interest. In humans, in theory it should be possible to detect TMA levels in the urine. With TMAU numbers probably being grossly under-estimated, this seems potentially a marketable idea. You would think the fish industry might have some sort of product for this.

PH test strip paper:
TMA is very alkaline, Around PH9 ?. Possibly it would roughly detect an issue but it seems too loose a connection. Many smelly compounds are mildly acidic/alkaline so it's not likely this would tell us much.

Trained dogs:
As ludicrous as it sounds, you have to wonder if this could be a long-term idea. Presumably there may be difficulties since they probably produce most of the smells too. Hopefully it wouldn't come to this but it may be better than nothing.

Electric sensors:
This would include many things like the oral-chroma for halitosis and other types of sensors (mass spectrometers etc). Portable ones of credibility would be helpful, same as smoke-sensor equipment has become so advanced and cheap. Once manufacturers/experts realise the scale of this problem, I think this could become a reality some day. It could also include portable urine sample testers, as well as gas testers.

TMA urine 'check up':
Perhaps, if someone fully believes only in TMAU and has been tested, regular urine 'check ups' could be of some use in checking TMA levels (if no simple home test currently exists). For instance, if you are following the low choline diet, it could indicate the levels of TMA present (thought would be needed about this. e.g. in this case it may be better not to use a challenge dose of choline). Also, if they were taking vitamin B2, it may indicate if there was any improvement. At around $150 a test, it would be a pretty expensive approach.

These are just some ideas to get people thinking, to come up with group answers. Let us know your ideas. Perhaps some day as a group we can develop home tests.


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