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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

Wednesday, June 4, 2014

MEBO TMAU Test Program Results: BATCH #10

Click on icon to see chart

The MEBO Research TMAU urine test program was launched 2 years ago this month, on June 2012, and MEBO has received 208 test results during this time, including the results of the first batch from the DLE - Medicina Laboratorial in Brazil. Some of these 208 results have been very interesting and helpful to many sufferers from around the world. For example, some women have done two tests collecting samples two weeks apart, and some have received results that indicate transient trimethylaminuria, possibly associated with menstruation. Others have received positive results that they have taken to their physician with the TMAU literature that is attached to the results, and have received a great deal of support from their physician, most of whom had never heard of TMAU before.

Other sufferers have received negative results indicating that TMAU is not the cause of their problem. This can serve to ease their minds knowing that they do not need to go on a low choline diet. Nonetheless, because this test has told them what they don't have as opposed to what they do have, it leaves the sufferer without direction because there are no other odor-type tests other than the ones normally prescribed by physicians for medical conditions that produce odor, such as diabetes, kidney failure, liver failure, cancer, gingivitis, tonsillitis, etc. So what do sufferers do to try to control their odor when they've received a negative result? The following list has helped some sufferers reduce, if not completely control their odor symptoms.


WHAT SUFFERERS CAN DO WITH
NEGATIVE TMAU TEST RESULTS

  1. Observe one's bowel function. Is there a tendency for constipation, diarrhea, or alternate from one to the other, or are bowel movements voluminous and regular? The place where most of the odorous chemicals (not only TMA, but other chemicals as well) are formed is in the gut (colon) by the microflora, and these odorous chemicals pass into the blood stream. There are some microbes in the gut that produce more odorous compounds than others. When one is experiencing high odor levels, periodic cleansing of the gut is recommended on a day that one can stay home, to thoroughly clean out one's intestines.
  2. If possible and under a doctor's care, do a course of antibiotics immediately followed by a course of probiotics. Even if an antibiotic treatment is not done, a laxative cleans followed by probiotics is beneficial.
  3. Avoid spicy foods or foods that have a strong odor. Whenever odorous foods are consumed, the odorous chemicals are entering the body.
  4. Avoid sulfur foods, like onions, garlic, etc. See list of Sulphur Contents of Foods
  5. Eat natural foods, especially fruits and vegetables, double fiber cereals, English muffins, and/or Arnold Double Fiber bread. If one doesn't eat much fiber on a regular basis, one might want to begin introducing it slowly and increasing the amount of natural fiber in foods as tolerated. If a sudden large amount of fiber is suddenly consumed, it might produce flatulence and discomfort.
  6. Restrict red meat consumption to small portions, and icrease chicken and some fish or seafood in diet.
  7. Exercise...this helps clean out one's system with perspiration and deep fast breathing. As one continue doing this, the saturation level of the odorous chemicals will slowly but surely decrease.
  8. Drink A LOT of water throughout the day to help flush any odorous chemicals.
  9. Since the test result was negative TMAU, there might not be a need to use acidic soaps, and more pH balanced body washes and shampoos might be more effective.
  10. If halitosis is a concern, consult with a dentist for a thorough oral checkup.
  11. If on has sinus problems or tonsil problems, a consultation with an otolaryngologist (ears, nose, and throat specialist) is recommended.
  12. If one has underarm and/or groin odor, discuss with physician and or a dermatologist to see if they want to prescribe topical medication.

Important questions to ask oneself:
  1. Do I suffer from halitosis? (Scroll down to see all posts)
  2. Foot odor?
  3. Bromhidrosis (uncontrollable underarm odor?
  4. Scalp odor?
  5. Odor around neck, chest, and back?

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


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