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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

'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 Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
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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


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Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
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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

Friday, July 27, 2012

Metabolic Disorders : General overview


This online article published in Better Medicine from Healthgrades, presents a very basic, general overview of metabolic systems, a very basic introduction to metabolic disorders, symptoms, causes, and treatments. Even though the only reference to body odor mentioned is "body fluids that have a maple smell," and doesn't really mention other types of metabolic odors that result from the various types of metabolic disorders, it does present a very general overview of some of the more common metabolic disorders. These are some of the symptoms addressed in the article:


What are metabolic disorders

Metabolism is the breaking down of food to its simpler components: proteins, carbohydrates (or sugars), and fats. Metabolic disorders occur when these normal processes become disrupted. Disorders in metabolism can be inherited, in which case they are also known as inborn errors of metabolism, or they may be acquired during your lifetime...

Symptoms of inherited metabolic disorders

Symptoms of metabolic disorders that run in families include:
  • Body fluids that have a maple smell
  • Bone abnormalities such as osteoporosis (thinning and weakening of the bones)
  • Difficulty with memory, thinking, talking, comprehension, writing or reading
  • Enlarged liver, heart, kidney or spleen
  • Failure to thrive in infants and children
  • Frequent infections
  • Hypoglycemia (low blood sugar)
  • Loss of vision or changes in vision
  • Muscle twitching, spasms or seizures
  • Muscle weakness
  • Paralysis


Symptoms of acquired metabolic disorders

Symptoms of metabolic disorders that you can acquire during your lifetime include:
  • Chronic or persistent diarrhea
  • Fatigue
  • Headache
  • Irritability and mood changes
  • Muscle cramping
  • Nausea with or without vomiting
  • Rapid breathing (tachypnea) or shortness of breath


Serious symptoms that might indicate a life-threatening condition

In some cases, metabolic disorders can be life threatening. Seek immediate medical care (call 911) if you, or someone you are with, have any of these life-threatening symptoms including:
  • Bluish coloration of the lips or fingernails
  • Change in mental status or sudden behavior change, such as confusion, delirium, lethargy, hallucinations and delusions
  • Respiratory or breathing problems, such as shortness of breath, difficulty breathing, labored breathing, wheezing, not breathing, choking
  • Seizure

Metabolic Disorders Spotlight
Share Your Story. Get Community Support
https://medlineplus.gov/metabolicdisorders.html

María

María de la Torre
Founder and Executive Director

A Public Charity
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maria.delatorre@meboresearch.org
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