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

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MEBO TMAU TESTING DISCONTINUED
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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

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TMAU UK end total:262
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TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


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Return cut-off date : passed
Analysis can take 6/8 weeks
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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

Wednesday, December 15, 2010

TMA and Epilepsy, learning disabilities, anxiety, and more

There are two articles in PubMed that link TMAU to seizure activity, anxiety, and learning disabilities. It seems that even though TMAU is not considered to be a serious medical condition, it does seem to wreak havoc with other diseases. In addition to epilepsy, some sufferers who suffer from autoimmune diseases and allergies claim that their odor symptoms seem to trigger their conditions. Much more research is needed in this regard.

Literature reports only two cases affected by trimethylaminuria and epilepsy. We describe a third patient who, from the age of seven, was affected by temporal focal seizures with nocturnal episodes of nausea, vomiting, anxiety and autonomic activation followed by headache...Our patient also showed learning disabilities despite a normal intelligence quotient (IQ), while another described patient had an IQ varying from borderline to mild mental retardation. We discuss the association between trimethylaminuria and epilepsy, and formulate some hypotheses on the relationship between trimethylamine convulsive effect and the anticonvulsive role of levetiracetam.
Epilepsy and trimethylaminuria: A new case report and literature review. Pellicciari A, Posar A, Cremonini MA, Parmeggiani A.Brain Dev. 2010 Oct 20. [Epub ahead of print] PMID: 20970269 [PubMed - as supplied by publisher]


A 16-year-old left-handed male is presented with a history of seizures associated with a fish-like odour and behavioural disturbances thought to be related to trimethylaminuria...The episodes would start with a fish-like odour, followed by seizures occurring in clusters and behavioural disturbance consisting of agitation, mixed affective symptoms, auditory hallucinations and delusions. A urinary assay of trimethylamine (TMA) was elevated, confirming the diagnosis of trimethylaminuria in this patient. He was treated with a choline-restricted diet with resolution of his symptoms.
Trimethylaminuria associated with seizures and behavioural disturbance: a case report. McConnell H, Mitchell SC, Smith RL, Brewster M., Centre for Epilepsy, Maudsley Hospital, London, UK. 1997 Aug 6. PMID: 9304724 [PubMed - indexed for MEDLINE]


A low choline diet isn't the only diet that helps control seizure activity. There is another online article on 3kimt.com about a little boy with epilepsy, not identified as having a TMAU or other odor conditions, who is controlling his seizures with ketogenic diet under the care of Dr. Elain Wirrell, a Pediatric Epileptologist at the Mayo Clinic. Yet Dr. Wirrell associates metabolic conditions as some of the different causes for seizures.

"There are some side effects, it's not for everybody and so there are some different causes for seizures different metabolic conditions which would make it very dangerous to use so we have to exclude those possibilities," said Wirrell.

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