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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
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at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


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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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BO Sufferers Podcasts

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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
MEBO Research is a
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See RareConnect
rareconnect.org 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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Monday, February 10, 2014

FMO3 Odor (not necessarily TMAU)

As we were leaving the hospital after I passed a kidney stone, my husband started a conversation in a very sensitive manner with me about my odor. He and I discuss this topic freely and openly as I’ve asked him to do, and he does give me good feedback.

when I’m in a lot of pain for which they give me pain medications, usually opiates, my odor becomes very strong.
He pointed out how every time I go to the hospital, which is usually when I’m in a lot of pain for which they give me pain medications, usually opiates, my odor becomes very strong. He is absolutely correct, and this reconfirms to me the theories discussed by Dr. Elizabeth Shephard in her PowerPoint presentation that she made for our MEBO Annual Meetup in 2012, Pharmacogenetics & Personalized Medicine for the Miami Beach Conference, 2012 Also see post, "Dr. Elizabeth Shephard's presentation : FMO3 - a protein that can multi-task.
some people’s metabolism are slower than others, and how a drug can stay in one’s system longer than established drug guidelines.
In this presentation, Dr. Shephard talks about how some people’s metabolism are slower than others, and how a drug can stay in one’s system longer than established drug guidelines. In some cases, FMO3 deficiency can leave some chemicals partially metabolized, and possibly in an odorous state.

For example, when my pain is extreme, the doctors tend to prescribe Dilaudid (hydromorphone Hydrochloride) or Vicodin (hydrocondone/acetaminophen) to be administered every 6 hours. Little do they know that it lasts me almost 12 hours before it is completely out of my system. The nurses sometimes seem confused that I ask them to wait a while before giving me the next dose, and they think that I just put up with a lot pain because I don’t want to become addicted. This is partially true, but the pain I put up with is not as intense as they think it is simply because my metabolism has not completely metabolize the previous dose of the drug yet.

this slow metabolism is an FMO3 enzyme deficiency, which may or may not have anything to do with TMAU, and possibly explain non-TMAU body/breath odor conditions.
In theory, this slow metabolism is an FMO3 enzyme deficiency, which may or may not have anything to do with TMAU, and possibly explain non-TMAU body/breath odor conditions. This is what I understand Dr. Shephard is saying in her presentation. This deficiency also leaves chemicals only partially metabolized, which could explain the odor my husband is telling me about that I develop when I’m hospitalized. In fact, this may be true not only with drugs, but also with metabolic processes of the foods we eat.

Nonetheless, when faced with this extreme pain, I will opt to take the drug and to deal with the odor because my blood pressure gets dangerously high when I have extreme pain. It is very comforting to me to see my husband and the rest of my family’s love and support in spite of my odor.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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A EURORDIS and NORD Member Organization

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