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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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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
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



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

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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NORD Member Organization
See RareConnect 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

Friday, August 3, 2012

Adverse drug reaction, metabolic deficiency & odor


On Tuesday, my younger son had knee surgery (ACL transplant, Lateral Meniscectomy, and Medial Meniscal Repair), with general anesthesia. His adverse reaction to the general anesthesia brought to mind Dr. Elizabeth Shephard’s PowerPoint presentation, FMO3 – a protein that can multi-task that she created for MEBO's annual Miami Beach Meetup/Conference. This PowerPoint features the importance of Pharmacogenetics & Personalized Medicine for persons with metabolic deficiencies that result in adverse drug reactions, and in some cases death.

My son’s adverse reaction involved uncontrollable vomiting of bile and tremors, since he is epileptic (see articles on TMA and epilepsy, learning disabilities, anxiety, and more). The biggest concern was that he would vomit during seizure activity resulting in choking and pulmonary aspiration of bile. So he was administered propofol to render him unconscious in hopes that when he would regain consciousness, this reaction would have subsided, but it did not. This adverse reaction lasted four hours, in spite of Sofran administered intraveneously numerous times. Thankfully, he never choked or aspirated bilious vomitus and his tremors subsided, although the nausea and lightheadedness has lasted four days up to now; and we will see how long these symptoms will linger.

The surgical staff was very concerned during this episode, and relieved after these symptoms subsided. They made it a point to explain to him that this reaction was not an allergy, but simply an adverse reaction to anesthesia. The anesthesiologist recommended that he warn future anesthesiologists that he does have adverse reactions to anesthesia, so they use other drugs for future surgeries. This recommendation is in line with “personalized medicine” that Dr. Shephard discuses in her PowerPoint.

Ever since this incident on July 31st, there has been a strong odor about him, which has invaded his room and is impossible to remove with fans and opening the window. He is drinking plenty of water to flush his system, but due to his surgery, he cannot do cardiovascular exercise to expedite the process of cleansing these drugs out of his body.

Today is the first day the odor is not detectable
(lasted 4 days).

More research into pharmacogenetics and sufferers of metabolic body odor conditions needs to be carried out, in order to help physicians develop the perfect personalized medical treatment for each individual.


María de la Torre
Founder and Executive Director

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