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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
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Started May 2018 - Ongoing

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TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
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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, April 15, 2010

Trimethylaminuria case in Chat magazine this week (UK)

An article about trimethylaminuria appeared in the issue dated 15th April, of a UK magazine called Chat magazine. Since today is the day of the 22nd April issue, we are posting the TMAU article now, for everyone to read.

Thank you to Mr L (aged 55), who kindly contacted the magazine about his body odor problem to raise awareness.

Windows down, air fresheners on ...

I'd been getting lifts from my workmate for weeks. But suddenly he seemed to be fumigating the car !
"You're saying I smell mate ?" I asked, lightheartedly. Fair enough. An electrician, I did get quite sweaty.
"No not like that..." he started. "Like rotting fish."
"I'll stay away from the chippy!" I joked. But I was horrified.
"I stink," I groaned to my wife, Elaine, when I got home.
"Don't be silly," she reassured me.
But the next few weeks I noticed people wrinkling their noses. So I asked a few what was wrong.
"You smell like burnt rubber," one said.
Dustbins, drains and doggy do-dos were also mentioned!
Eventually, I went to the doctor, but he dismissed it. Yet still it went on. People on the bus edged away, mates told me I needed a wash. But it made no difference. Showering twice a day, putting on aftershave, constantly changing clothes - the wafts still followed me. I returned to the doctor. But again he shoo-ed me away. So years passed. And it got worse. And worse.
I'd always been outgoing. Now I stopped socialising, hated even going to the shops. I'd become a prisoner in my own home ... I felt people outside were sniffing. Was the pong so bad it was going through the walls ..?
Weirdly though, me, Elaine, and my close friends couldn't smell me. Our noses had become accustomed!.
For 12 years, life was still a humiliating nightmare.
Until finally, 3 years ago, when I changed doctors and he referred me to a specialist ...
"Trimethylaminuria", the specialist confirmed last September.
It was a metabolic condition where someone can't break down trimethylamine, a chemical which is in some foods. Instead, it stays in their blood and causes a stinky fishy odour.
And there was no reason why it'd come on...
And although there's no cure, it wasn't all bad news...
"You can mange it," the specialist explained.
I avoid foods with high triemthylamine levels, like eggs, liver, peanuts and seafood.
Also, I take charcoal tablets, which are smell filters.
It has made some difference, but not enough. I'm still paranoid and embarrassed.
I guess this really isn't a condition to be sniffed at!
The main foods to avoid are :
Those that contain trimethylamine ot its oxide (many seafoods)
Foods that contain choline (the gut bacteria change this to trimethylamine)
Foods that contain Carnitine
Foods that inhibit FMO3 enzyme : e.g. indoles in vegetables

For more general information on trimethylaminuria, see the MeBO Research TMAU page


moxadox said...

It's so unfortunate that this poor man suffered from not only his socially crippling condition, but also the all-too-common indifference of the physician to his complaints. Instead of pricking up his ears, or, better, his nose (!) to the patient's description of his problem, the doctor in question poo-poo'd it. Ironically, if he'd gone to a pediatrician instead of an adult or family doctor he would have had his diagnosis straight away. Inborn errors of metabolism are something we're bred to detect!
Laura P. Schulman, MD, MA, FAAP

Jul 7, 2010, 4:56:00 AM
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