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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

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact map@meboresearch.org

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to join : go to
or contact
Ubiome Gut EXPLORER : 10% OFF
Join/Watch the weekly
TMAU UP Podcasts

Videos : TMAU stories

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
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
BannerFans.com
RESEARCH DETAILS

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£ 943.03/GBP
$ 568.00/USD

TOTAL at today's ROE
£0.80/GBP = $1.00/USD

£1,398.07 = $1,745.14

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Blog Archive

Thursday, June 11, 2009

How we defined our son's odor

My husband and I have spent the last decade trying to understand an extremely strong odor that came from our son. He had always had much milder odor since his infancy, but it became extremely overwhelming when he turned 14 years of age, and he is currently 23 ½ years old.

...even though there was some sulfur scent in his odor, it wasn’t a pure sulfur odor, or a pure dead fish odor, or a pure fecal odor.
IT WAS A COMBINATION OF THEM ALL, and perhaps others as well!
Luckily, my husband has a much keener sense of smell than I do, and he can more readily discern and identify odors quite precisely. Being a saltwater fisherman by hobby since early childhood, my husband has been very much exposed to live, dead, fresh, and rotting fish in the hot tropical Caribbean and South Florida sun. He can easily identify all the various fish odors in these various states.

I have also been very much exposed to fish and decaying dead fish odor because I grew up in a freshwater-front home, and periodically there would be dead fish in the water that we could smell sitting in our back yard. Both my husband and I arrived at the conclusion that even though at times the odor coming from our son had traces of these fish odors, it was more than that.

Since puberty, I have personally experienced an odor coming from my own body, but I have always had difficulty identifying it. I also had acne on and off since puberty, and used sulfur-based topical creams on and off for years. Initially, I smelled the sulfur in these medicines, so I would apply it only at night to sleep. But eventually, I couldn’t smell the sulfur anymore. By the time I met my husband when I was 26 years old, he immediately smelled the sulfur on me even when I didn't have the creams on my skin. Not only did he smell it on my face, but on other parts of my body wherever I had perspiration or skin oils. So we can safely say that both my husband and I are very familiar with sulfur odor, so when our son began to emit this strong odor, it was most certainly not solely sulfur odor, although there were traces of sulfur odor as well.

I believe that all human beings are familiar with fecal body odor, and my husband has frequently described our son’s odor as fecal (and not as a matter of speech), yet not 100% fecal; there is a deeper odor to it that seems to accompany the fecal scent.



In an effort to better understand odors as well as to enjoy an overdose of natural beauty, my husband and I went on vacation to Yellowstone National Park two weeks ago. We were both very anxious to experience the ‘rotten egg’ sulfur odors that we had read and heard about that comes from the extreme temperature and acidic environment of the geysers, hot steamy sulfur pools (see video above), and mud volcanoes. We wanted to verify our identification and categorization of our son’s odor by smelling the unprocessed natural smell of sulfur and comparing.

The most interesting thing to me was that as we entered the park's west entrance, my husband smelled the sulfur long before I did and before we could even see the geysers, pools or mud volcanoes. I could smell it only when standing near them or with the wind blowing the mist in my direction. This also calls to mind how some parents, siblings, friends, etc., can not understand what a sufferer is even talking about because they don’t perceive their odor, or instead might perceive it mildly, while others at school or work find it extremely offensive.

This also calls to mind how some parents, siblings, friends, etc., cannot understand what a sufferer is even talking about because they don’t perceive their odor, or instead might perceive it mildly, while others at school or work find it extremely offensive. We both agreed that even though there’s a faint sulfur smell in my son's odor, it wasn’t a pure sulfur odor, or a pure dead fish odor, or a pure fecal odor. IT WAS A COMBINATION OF THEM ALL, and perhaps others as well!

This only raises more questions… people diagnosed with TMAU claim they don’t ONLY smell of fish. …people diagnosed with TMAU claim they don’t only smell of fish. COULD IT BE THAT THERE ARE MORE CHEMICALS INVOLVED AND/OR METABOLIC ENZYMES DEFICIENCIES THAN JUST THE ONE FMO3 ENZYME THAT OXIDIZES TMA?

COULD IT BE THAT THERE ARE MORE CHEMICALS INVOLVED AND/OR METABOLIC ENZYMES DEFICIENCIES THAN JUST THE ONE FMO3 ENZYME THAT OXIDIZES TMA?

Could there be multiple bacteria production of other compounds in our gut in addition to TMA that eventually our liver metabolic enzymes can’t metabolize, and thus flows freely through our bodies and comes out through our pores?

Could it be a result of a microbial imbalance, or possibly the presence of an unidentified micro-organisms in our digestive tract, including in the extreme environment of our very acidic stomachs (as there are in the Yellowstone sulfur pools), and or unidentified deficiency of other metabolic enzymes not yet identified?

WE NEED MORE RESEARCH!

THERE ARE TOO MANY UNANSWERED QUESTIONS…


María de la Torre

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