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

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MEBO Karen
at UK Findacure conf 2020

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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

Monday, April 6, 2009

Topics discussed in our Conference Call

“I have this little problem that may be triggered by some foods I may eat…”

In our bi-weekly Conference Call yesterday, we welcomed a new member to our community.

As usual, we discussed what has worked and has not worked for us in our efforts to control our odor. Our fundamental concern and focus is the need to be able to get an individualized diagnosis of the cause(s) of our odor. Unfortunately, we bear testimony that a vast majority of the scientific and medical establishment around the world do not know what the causes may be, and thus the dire need for research.

The original TMAU test was discovered in the 1970s, but many experts did not accept it as a valid condition until the 1990s when the DNA test for TMAU was discovered. Consequently, we all firmly believe that it is up to the sufferer to raise awareness, and we can begin to achieve this by bringing written information on TMAU and or the forum and this blog's website addresses to our General Physicians.

Although experts have recommended Vitamin B2 for persons diagnosed with TMAU and chlorophyllin and charcoal for other types body odors as well, all the sufferers on the call felt that these supplements have not resulted in any significant reduction of odor as much as the diet and probiotics have.

We tossed around ideas of how to tell people about our odor. It appears that our co-workers, employers, friends, partners, and family have difficulty coping with a more bold approach, and as a result, will inevitably resort to their denial of the problem as a result. Instead, it was recommended that we introduce the odor topic in a more low-key approach by saying something like, “I have this little problem that may be triggered by some foods I may eat…” It was not recommended on the call to initiate this conversation with everyone, but rather to persons we are close to or would like to be close with and trust. In fact, some callers were discussing how trying to explain this condition to one’s employer has at times made things worse to some members of this community for various reasons.

We discussed odor triggers and treatment options. Stress is a major trigger for all types of odors. Changes in the body’s pH causes a microbial imbalance which may result in and odorous bacterial overgrowth. Inflammation of the abdomen alters the gut flora, thus probiotics are recommended.

Once a bacterial overgrowth sets in on the dorsal tongue (the back of the tongue), it becomes very difficult to control. This odorous bacteria is anaerobic, or can’t live in a well-oxygenated place, thus it actually creates mucus to protect itself from the oxygen. This is why tongue scrapers are so successful in reducing bad breath, because by scraping off the mucus and rinsing the teeth and tongue properly, the bacteria begins to weaken, thus diminishing breath odor.

Regarding treatment options for hyperhidrosis and bromhidrosis, Endoscopic Thoracic Sympathectomy (ETS), Botox, and suction curettage were discussed. ETS involves the cutting of a nerve to stop hyperhidrosis, and of all the procedures available, this one seems to result in less compensatory sweating. It is important to note that if one’s cause of body odor is systemic, all these procedures will not have lasting effects. It is preferable to prevent volatile organic compounds (VOCs) build-up by controlling one’s diet and by taking probiotics on a daily basis.

One of the callers had tried three very painful treatment sessions of Botox injections under her arms and she noticed that the odor simply changed to a unpleasant sweet odor for the first three days after the treatment. She did manage to get her medical insurance to pay for it. She repeated this treatment three times because she felt that perhaps it wasn’t working because she had not received sufficient Botox to do the job, but it simply did not produce results.

It was noted that a sufferer posted in the MSN forum that suction curettage, or lipo suction, resulted in no odor for a couple of weeks but then it came back stronger. This procedure is mainly marketed for hyperhidrosis as opposed to bromhidrosis.

We explored ideas on the crystallized salts Arun has been having success with, as well as soaking in warm ocean waters. The ocean water has other properties that are beneficial to a deep cleansing of our sweat glands and oil glands. Soaking in the warm ocean water is also very soothing and relaxing, which helps keep the odor down, since stress proves to be a strong trigger.

Enjoy the video!


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