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

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

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

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

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
NCT02683876

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
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

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Blog Archive

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

Tuesday, January 17, 2012

International shopping for probiotics and other supplements

Many sufferers from various countries in the world write to MEBO asking where they can purchase probiotics and other supplements at a reasonable price because they are not able to find them in their respective countries. I did a Google search using the keywords, "probiotics international shipping," and I ran across this website, Vitacost.com. They seem to have a decent selection, including the probiotics my son originally used when he first did the NIH recommended TMAU odor-management protocol,

International customers can use the Shipping Calculator on the lower left side of the checkout page to "Choose your country, and click "Calculate", to see if they ship to your country before giving your credit card information. The shipping cost seems to be very reasonable. However, before you spend your money on shipping costs, I recommend that you first check with your local pharmacy to see what products they carry or which they can order for you.

Read the ingredients well, and whenever possible, research the product online. Most supplements on this site have a Supplement Facts box with detailed information. For example, Jarrow Formulas Jarro-Dophilus EPS, has the following:


For Intestinal and Immune Health

Jarro-Dophilus EPS is a Stable-Dophilus® due to its stability at room temperature and enteric coating, which protects the probiotic bacteria from stomach acid. Eight (8) different strains of probiotic bacteria are delivered directly into the small intestines where probiotic bacteria fully exert their beneficial effects. Probiotic bacteria in Jarro-Dophilus EPS are selected from the following 4 genera: Lactobacillus, Bifidobacteria, Lactococcus and Pediococcus.

Strains in Jarro-Dophilus EPS promote healthy intestinal microflora, which in turn helps to support intestinal health and immune function. Bifidobacteria longum BB536 has been clinically shown to stimulate immune response and suppress intestinal putrefactive bacteria. L. rhamnosus R0011 is a unique, high producer of polysaccharides that facilitate colonization and stimulate intestinal immune response. L. acidophilus R0052 assists in breaking down lactose (milk sugar), which may improve digestion of dairy products by those individuals who are lactose intolerant. Lactococcus and Pediococcus help reduce spoilage caused by unfriendly bacteria in fermented foods.

Supplement Facts
Serving Size: 1 Vegetarian Capsule
Servings per Container: 120
Amount Per Serving % Daily Value
Probiotic Bacteria Blend (8 Strains) 5 Billion Oganisms
L. rhamnosus R011
Pediococcus acidilactici R1001
B. longum BB536
B. breve R0070
L. acidophilus R0052
L. casei R0215
L. plantarum R1012
Lactococcus lactis ssp. lactis R1058 *
*Daily value not established.
Other Ingredients: Potato starch, magnesium stearate (vegetable source), and ascorbic acid. Vegetarian capsule consists of hydroxypropylmethylcellulose and an aqueous-based enteric coating.

Contains: Soy (less than 0.1%) and milk (casein, less than 0.01%).

Guaranteed 5 Billion live organisms per capsule when kept at room temperature or refrigerated and within best used by date.
Free Of
Wheat, gluten, egg, fish/shellfish, peanuts/tree nuts.


Some supplements are actually not good for body odor. For example, Spring Valley Multi-Enzyme Probiotics got a product review in the Walmart site that says,


fish smell explained
It was explained to me that the "fish smell" is the Ox Bile as listed in the ingredient. This is a very important ingredient if you have had your gall bladder removed
.
Well...a product that has a fish smell is not good for us. Also, in some cases, it might be helpful to get probiotics that are lactose free and/or glutten free, though not absolutely necessary for everyone.

I hope this helps.

María

halitosis research
María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

body odor petition
MEBO Research

1 comments:

Faith333000 said...

Is Lactobacillus rhamnosus not good for tmau sufferers?

Jul 31, 2023, 8:13:00 AM
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