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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 Map Testing & Meetups

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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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Join/Watch the weekly
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

Sunday, November 22, 2015

Herbal Hill Checklist for Body Odour

Karen MEBO Research
A word from Karen, UK Public Relations Director MEBO Research.

A TMAU specialist has devised the following checklist to help those who are new to the community.

A starter checklist of tests for those with body odour that appears to have come ‘from nowhere’:

1. TMAU test (MUST be choline loaded: ie. 2 eggs + a can of baked beans the night before the test. Take first morning urine.). This should tell you whether you have TMAU1 or TMAU2. TMAU1 is genetic, and a low choline diet should be immediately started. TMAU2 is non-genetic. The underlying cause should be investigated (it could be any number of things, see below). See HOW TO GET TESTED HERE: testing instructions (MEBO TMAU Test Program has been suspended until January 2016 due to construction. Anyone interested can fill out the requisition form to go on a waitlist)

orphanet TMAU test list

If you are negative or diagnosed as TMAU2 on the TMAU urine test, your next steps should be (in no particular order):

2. Genova Diagnostics Complete GI test with parasitology [or other similar stool test]. Have a look on the Genova website, find a nutritionist/doctor in your area, and order the test. Expensive (approx £250 last we heard), but worth it. This should tell you whether you have a gut dysbiosis, as it profiles your gut bacteria, fungi and parasites.
Following this test, if you have been shown to have a significant issue with bacterial dysbiosis, fungi or parasites, work with your doctor/nutritionist to get rid, and re-balance the gut!

3. Colonoscopy for potential bowel prolapse. We’ve heard of several cases in which bowel prolapse has been thought to be an underlying cause of body odour.

4. Liver and kidney check – take blood tests to ensure your kidney and liver is functioning normally. Any disease or damage to the liver or kidneys can reduce the ability of your detoxification system to work at its best. If there is an ammonia smell particularly, the liver should be suspected. Also, ask your doctor to check for a Urea cycle disorder if the ammonia smell comes mainly after eating protein/meat meals.

5. Coeliac disease blood test. We’ve had many anecdotal instances of those with underlying coeliac disease who say that 1-2 days after eating wheat/gluten, they experience a ‘fecal’ body odour. So, it is worth checking out.

6. Constipation – see your doctor for the best way to treat this. Many people find Apple Cider vinegar capsules and a 500mg capsule of magnesium before bedtime can help relieve symptoms of mild constipation. If the constipation is very bad or longstanding, you should see your doctor immediately, and we’d heavily suggest a colonoscopy to check for potential issues in the gut.

7. Diet – an easy way to back check whether you have an issue with a single food, is to do an ‘elimination diet’. Some people claim that eliminating a single food (eg. Gluten for coeliacs) can stop their body odour in its tracks. We've heard people say restricting the amount of protein and/or dairy foods particularly beneficial, but we’d advise seeing a doctor or nutritionist before embarking on any sort of restrictive diet, as finding the underlying cause is important
(eg. If you have coeliac disease, lactose intolerance or issues with protein digestion, you really should know why, and discover how best to treat for whatever condition you have).

8. Skin fungal issue. Particularly if there is itching and/or rash, and particularly if the itching and/or rash is in the groin, underarms and/or feet. Fungal issues on the skin can be very odorous. A dermatologist is the best one to check for this. We've heard people say that some skin fungal issues do not show any of the usual itching/rash symptoms. There are some over-the-counter antifungals which may be helpful, and Herbal Hill has some effective combination anti-fungals which they will be selling soon on

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Anonymous said...

Trinzyme project ends on the 16th of January. Desprately waiting for some good news.

Nov 22, 2015, 6:17:00 PM
blogcontributor2 said...

it's unfortunate but we don't have much. I think it is still going ahead but don't know any details. At first the idea to get funding was to try crowdsourcing, which involved being more open and communicative. But then the plan switched to trying the old ways for funding, which is far more secretive. It's the same with any idea in the early stages when patenting / copyright etc is a concern. Normally researchers do 'non-disclosure' agreements about early details, and that is the sort of approach that has now been taken as opposed to crowdfunding.

Nov 22, 2015, 7:26:00 PM
Anonymous said...

Can they not just get another grant as they did before.. I read somewhere Ataluren (Translarna) research is now complete so maybe this could help us.. Any news on that Paris Smell Of Us project?

Nov 23, 2015, 10:10:00 AM
blogcontributor2 said...

I would guess they would try for another grant. Keep in mind it is at the inception stage as a company. Ataluren is probably a much bigger company now. Maybe $100 million company. Their drug if it worked would only help those with a certain type of 'null' fault and even then the results say 10% better etc. I don't think most of have that type of fault.

We will contact the Paris project. The problem here again is that it is at an inception stage (even pre-company) and they are looking at the old funding model (from pharmas etc, non-disclosure agreements) and also TMA may not be an attractive model for investors. It may not get off the ground (I don't know). I'm hoping others are working on this concept because of the proposed heart disease - TMAO theory.

P&G will be bringing out some sort of 'tmao managemnet supplement' soon. Maybe within a year. It might be something like chlorophyll mix though.

Nov 23, 2015, 3:51:00 PM
Anonymous said...

I trust/encourage the researchers to think of us sufferers first before thinking about making any profits. Not a day goes by without feeling paranoid and feeling scared. I really hope that we don't have to die with this terrible disease.

Nov 24, 2015, 3:07:00 PM
blogcontributor2 said...

It's the investors that will want profit. Otherwise they will not want to fund. This is true of any drug except if government provide the funding. The researchers have no money which is frustrating for them.

Nov 24, 2015, 10:54:00 PM
Anonymous said...

Oh I see. I didn't know that, I always assumed it was the researchers that makes the money for their ideas. Thank you for the information.

Nov 24, 2015, 11:31:00 PM
blogcontributor2 said...

The usual situation is that researchers cannot proceed with their ideas due to lack of funding.

The Paris researcher replied and says he is still looking at ways to fund it but no luck so far. Also that his research would take years for a final product probably.

Pr Colin Dolphin was looking for a grant for something he wished to do about TMAU but was turned down.

Sometimes I wonder if researchers are too focused on the old model of funding (from gov agencies, wealthy sources etc) but it's their decision.

P&G will be releasing some sort of 'tmao management' supplement in the near future (no timeline yet) but this may a patented chlorophyll mix or something. With the interest in TMAO and heart disease hopefully there are many projects going on that we don't know about.

Nov 26, 2015, 12:22:00 AM
Anonymous said...

Can you give details of the Paris researcher?

Dec 19, 2015, 2:59:00 AM
Anonymous said...

Can you give contact details for the Paris researcher?

Dec 19, 2015, 3:00:00 AM
Anonymous said...

Hi I was wondering if we could lower tmao would that reduce the body odour?

Dec 19, 2015, 11:46:00 PM
Maria de la Torre said...

First of all, the chemical, trimethylamine (TMA) is what smells of rotten fish. Then, the FMO3 enzyme in the liver add an oxygen molecule to TMA to convert it to the non-odorous state, trimethylamine N-oxide (TMAO), but decreases the chances of developing cardiovascular disease (CVD). Reducing TMAO does nothing to decrease body/breath odor. However, reducing TMA levels in the blood reduces odor.

In Primary TMAU (TMAU1), the FMO3 enzyme are deficient and thus unable to convert odorous TMA to non-odorous TMAO. Therefore, these sufferers are not at risk for CVD caused by high levels of TMAO. On the other hand, Secondary TMAU (TMAU2), has a well-functioning FMO3 enzyme that converts TMA to TMAO, and there is a possibility (not always the case) that TMAO levels can be elevated.

If the treatment for an odor condition and for CVD targets controlling TMA levels in the blood, then it could be effective for both, TMAU1 and TMAU2, as well as to decrease TMAO production.

Jan 6, 2016, 7:12:00 AM
Anonymous said...

Maria, if tmau2 people have a well functioning FMO3 enzyme, then why do they smell? Sorry if that's a stupid question.

Also, will this treatment be just for fishy smells? Will it do nothing for the fecal and garbage type B.O.s? Are they a separate condition, or are they just a complication of the TMAU problem and will go when the TMAU goes?

Jan 22, 2016, 10:21:00 AM
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