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

Additional info:
MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

Full details :
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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
MEBO Research is a
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

Tuesday, February 17, 2009

Testimonial: Possible body odor side effects

body odor
My only two sons and I have experienced similar body odor related symptoms as well as similar symptoms to others in the forum as described below. We have had varying degrees of odor with my older son having the strongest and me having the mildest of the three of us. I disclose all this personal information with my sons' consent in our struggle to fight against any odor-phobic tendencies we may have, to promote social awareness, and in hopes that experts take note to help us find answers. My husband and I are pretty good at detecting the odor emitted by both my sons and myself, so most of this observation comes from us. Unfortunately, since the scientific/medical community has not yet discovered all but one of the metabolic conditions that produce these unmetabolized compounds, they don't have answers for us, so sometimes they dismiss our ODOR complaints as being all in our mind! Other times they do smell it. My older son): His sweat on his neck burns and frays the collars of his clothes; and the sweat on his hands and arms has bleached his black wrist cushion where he rests his hands when he writes on his computer, and he frequently has rashes on his hands, arms, neck, and chest. His abdomen has been swollen and painful (distended) most of his life, and only gets better, and sometimes completely normal, only when his odor decreases or is eliminated; he was born with asthma, and according to his asthma and allergy doctor, it's a miracle he's alive due to his severe allergies which often produce strong and widespread skin rashes. He becomes extremely fatigue when his odor increases, as he becomes easily intoxicated with meds, foods, and the environment. As his odor increases, all these symptoms increase, and as his odor subsides, these symptoms subside. Odor description: Fecal body odor and strong fecal breath; garbage-like full body odor; rotting dead animals; very strong mangrove-type urine odor. No 'typical' underarm or foot odor. My younger son: is color blind and lactose intolerant with digestive problems all his life. He was born with asthma, has complex partial seizures and learning disabilities, has strong tendencies of having tendonitis, inflammation of muscles and joints that take a long time to heal (though ruled/out rheumatoid). He also suffers from body odor. I have to wash some of his clothes three times in a row to get the smell off. Odor description: Somewhat similar to my older son's but less 'deep decomposing-type' odor, and sporadic mild bad breath. Also, has sporadic strong underarm odor not controlled by deoderant. has strong scalp odor, leaves the room and the car smelling like a football teams locker room. No foot odor. myself: I was born with asthma, have rheumatoid arthritis and fibromyalgia very much triggered by certain foods that also cause me to have odor - primarily alcoholic beverages, foods that have preservatives (almost everything), and foods high inTMA and choline. I have allergies to environmental triggers, including some (not all ) fragrances, molds, mildews, grasses and trees. My immune system is completely out of whack and I'll shift from having been in near death experiences numerous times with antibiotic-resistant E Coli in the blood and MRSA, to an overactive autoimmune system that reacts to everything producing skin rashes, fatigue, asthma, fibromyalgia, and severe rheumatoid arthritic flare ups. My odor tends to increase around the same time that my symptoms increase. However, in early menopause and after a complete hysterectomy, my odor has decreased significantly, also resulting from mega doses of antibiotic to kill antibiotic-resistant infections . I currently do take low doses of premarin. Odor description: Perhaps a very mild version of my sons' odors. When I eat an excessive amount of high choline foods or drink just one glass of alcoholic beverage, I get halitosis, odor in my scalp, oils and sweat throught my body, ordorous urine and groin area. I BELIEVE THAT WE ARE NOT A HYPOCHONDRIACS AND IT IS NOT ALL IN OUR MIND (ORS)! MY THEORY: I have my own theory as to the cause of these symptoms, and that is that as our unmetabolized compounds (some odorous and others non-odorous)stay in our systems, our bodies interpret these compounds and try to cope with them as if they were foreign bodies (bacteria, viruses, etc) that are threatening our bodies and putting us in danger, so our immune system attacks those areas in our bodies in which these compounds are stored. Our immune system tries to 'kill' these compounds in places where it attempts to release them from our bodies, like our lungs (producing inflammation), skin (producing rashes), etc. Our immune system attacks our muscles, tendons, joints, and most tissues (arthritis, fibromyalgia, tendonitis, etc.) and wherever these compounds may be found in our bodies. These compounds basically put us in a state of intoxication (CFS), and our bodies violently fight against these ‘invaders’ with our immune system and all the ‘cleansing organs'. Unfortunately, since the medical community has not discovered these metabolic conditions that produce these unmetabolized compounds yet, and they don't have answers for us, they tend to dismiss our complaints as being all in our mind, although many doctors have smelled us, especially my older son! SO WE REMAIN IN THE DARK!!!


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