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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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect

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MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

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

This is a GOOGLE FORMS survey

short url for survey :
https://forms.gle/vem2TjepKobYZPBu8

current participants : 113 (update 18dec20)

Sunday, April 11, 2010

Personal testimony of various odor types and triggers

One of the sufferers in our community has done a great job describing the various types of odors he suffers from, which he breaks down into two categories, systemic and secondary sourced. He has also categorized them on a scale from 1 to 10 for us to better note their intensity. In addition, he attempts to trace them back to food and medications he's consumed in an effort to make sense of their origin.

Of course, this is his own personal perception of his problem and not a professional diagnosis. Nonetheless, I believe that it is important to include in this blog a sufferer's point of view about his/her own condition, as most of the posts are geared toward the experts' opinions. After all, the purpose of this blog is to bring sufferers and experts together.

He has graciously given us permission to post this information in this blog in an effort to bear witness and to promote research. Our gratitude and best wishes goes out to him.

...For me, there are a few types of odors.[emitted from my body]

One of the odors I can smell strongly is a gas odor (like a fart) that comes out of my breath when I talk, and up out of my nose when I swallow. People also comment when I can smell it. I can control this odor by avoiding the triggers.

The triggers are:
Alcohol - 10 (very positive, have noticed every time)
Trazodone - 10 (on one occasion, I will have to test again)
Soy Sauce - 5 (very certain)
Salsa - 5 (very certain)
Pickles - 3 (not certain)

There is another type of odor that I can control. It is flatulence odor, and it can become very strong. It smells exactly like propane and sometimes garbage, and Ive also had a friend confirm this. The odor is so strong that it sticks to my pants or a chair for longer than 24 hours, yet there is no leakage of feces.

Triggers:
Sugars and Wheat 1-10. I am not sure if it is just one of them, or both. Whenever I try to gain weight, and eat a whole bunch of cookies or cakes consistently over a week, I eventually get this very very strong gas.
Sweets also give me a terrible tasting post nasal drip over time. And I also get a primary moldy/fungal type of smell in the nose (you know, like a vinegar, or foot type of smell).


So I wonder if a secondary odor I smell is coming from my nose.

This secondary odor I experience smells like clay and poop I guess. People tell me they smell something weird with this one, but when they say that, I can't always smell it. The secondary odor doesn't seem to be coming from any body part. I can smell it in the air around me, but I cannot smell it from my armpits, or skin, or if I wipe my anal area with tissues there is no smell. I can also not smell it the same as I smell the fungal type of smell in my nose. Also at times I get stronger scents of it, and other times not. Nothing I eat seems to affect or change it. Even on the low choline diet for 2 months, I can still smell it. It is possible that smoking is the cause of this. I have quit, and I may have noticed an improvement, but I am totally unsure. It has been about 4 weeks since I've quit, but Ive had about 2 cigarettes on occasion during this time. So if that is a cause, it may need more time.

One time, when I washed out my nose with a sinus flush, my friend said "it smells like poop in here". So it could also be something fungal in the nose.

The problem is, Ive been to two ENTs twice each, and had CT scan and they found nothing. But one of the ENTs told me, they still don't know anything about odors because there is no research. I haven't noticed this type of odor until recently (past 2-3 months), so I would like to see if it goes away with the Flip Turn sinus rinse, as people who have had this odor problem on other boards have gotten rid of it with this method.

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