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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 - 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

Thursday, August 28, 2008

Our Women's Conference Call last night: prepare for the holidays

On our Women’s Conference Call last night, one of our members gave us the good news that her insurance company paid for her doctor’s visit in which he prescribed her TMAU test through the Mayo Clinic. Now we’re still waiting to see if it will cover the lab that prepared her sample and shipped it to the Mayo Clinic. Then, the big question is, will it also cover the Mayo Clinic’s $144.20 fee. She will keep us posted, and we appreciate her sharing this with us very much.

Our main topic of discussion was on controlling our odor and preparing for the upcoming holidays and special family gatherings. We did discuss that different people have different substrate saturation levels, and even one person may have different saturation levels at different times based on hormonal changes and vitamin levels, and possibly other factors as well. I gave the example of my two sons and me. It takes me eating fish, lobster, shrimp, thick steaks, beans, or broccoli for a couple of consecutive days for me to smell. It takes my 16 year-old a lower dose to smell, and my 22 year-old only one full meal of any of these to make him smell. Afterwards, it takes me a couple of days for the odor to go away, it takes my younger son running 7 to 14 miles a day to clear it up in a couple of days, and it takes my older son 2 to 3 weeks to clear it up while working out (cardiovascular and weights) at the gym 3 to 4 times a week.

My opinion is that only after the odor is controlled do we gain control over our lives again by being able to test one food at a time at a very low dose to see if it produces odor (which will quickly go away since there isn't too much substrate saturation) as we learn how to listen to our bodies and to understand our bodies.

Afterwards, on special occasions...

Afterwards, if we decide to binge and eat what we know produces odor on special occasions, we can make wise decisions to do so knowing exactly what to expect, how long we know the odor will last, and we decide if it's worth bingeing or not. And if we decide to binge, we can keep in mind that the odor will be much more controlled if we have very small portions, like half a chicken breast with a little amount of delicious sauce (depending on the person's substrate saturation levels) with A LOT of the 'safe' foods to make us feel full and satisfied. I suggested that when we chose to eat a 'dangerous' food, to savor it leaving it in our mouths for a while before swallowing to fully enjoy its flavor (and to help with the digestion) so that we feel satisfied and feel that we too partake in the pleasures of life.

The important thing for most of us is not so much to be totally odor free every day for the rest of our lives feeling deprived and left out, but rather to obtain control over our odor so that we too can enjoy ourselves on special occasions and also have the opportunity to make the right choices in order to be odor-free for other important occasions. Nonetheless, this all begins with a very strict and difficult diet to practically eliminate the odor, if not completely eliminate it, and in the end we gain personal freedom to make choices in our lives. The key here is personal freedom through the power of control over our bodies by mastering the use of our diet and supplements until a cure is found.


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