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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

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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

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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
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MEBO survey for Dr Hazen click here
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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

MEBO Research Clinical Trials

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!
Note
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

1 comments:

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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