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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

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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

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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
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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

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Wednesday, November 19, 2008

Scientific Study : Correlation between Menstrual Cycle and Metabolic Malodor

Our scientist, Arun Nagrath and I are doing a research study together in which volunteer women who are currently on a low-choline diet with a choline intake of 425mg/day or less, will document their daily basal temperature and odor levels throughout their monthly menstrual cycle. The aim of this study is to determine whether there is a consistant pattern of odor change at any particular part of a woman's menstrual cycle.

Any woman interested in participating in this study may print the chart found at sites.google.com/site/trimethylaminuria/ladies-menstrual-study, purchase a basal thermometer at a local drug store, and begin taking her waking temperature at the onset of her menstruation. There are three things that need to be recorded in this chart, the daily waking basal temperature, daily odor level from a scale of 1 (least odor) to 10 (most odor), and to indicate the day the woman broke her low-choline diet which consists of a choline intake of 425mg/day or less.

PERSONAL AND RESEARCH GOALS OF THIS STUDY:

Many women in our community who have begun the odor-management protocol developed by the University of Washington, Seattle, Funded by the National Institutes of Health, have managed to decrease their odor level significantly, but quite a few of these women are experiencing intermittent generalized and or vaginal odor flare-ups. The aim of this study is to see if a pattern emerges indicating how the odor level is influenced by ovulation, PMS, and menstruation, if at all, and for the women to subsequently discuss these symptoms with their respective gynecologists. Perhaps the gynecologist may be able to prescribe a treatment plan to better control the intermittent odor.

METHOD:

A basal thermometer is used in this study because it is much more sensitive than a regular thermometer, since it has a range of only a few degrees. The women are asked to print the chart found at sites.google.com/site/trimethylaminuria/ladies-menstrual-study to document their daily waking temperature, daily odor levels, and when they broke their diet.

Day one on the chart refers to the first day of bleeding in a woman’s monthly cycle. To determine when a woman is ovulating, she would have to take her temperature with the basal thermometer every morning before getting out of bed and documenting it on a chart. Ovulation will occur around the time of temperature shift. Before ovulation, the temperature is likely to be between 97.2ºF/36.2ºC and 97.4ºF/36.3ºC before getting out of bed.

After ovulation, it will rise by at least 0.5ºF and is usually above 98ºF/36.6ºC. When the temperature stays elevated for at least three days, a woman may assume she has already ovulated. This is indicative of a hormonal change that produced ovulation. A number of additional body signs may be correlated with ovulation, including the presence of a clear, stretchy cervical mucus, a soft, open cervix, and sometimes mild cramping or even spotting.

In study, the woman would also document her daily odor level on a scale of 1 (least odor) to 10 (most odor)as she detects it or is told by others through direct verbal communication. PMS follows ovulation until her menstruation. PMS and menstruation also entails hormonal changes, as does ovulation.

It is also very important that the woman note on the chart the date she has broken her low-choline diet (eaten more than 425mg of choline/day, since this may alter the results for a particular day and the following few days as well. In this case, the increase in odor level should not be interpreted to be as a result of a hormonal change. By keeping record of the morning basal temperature along with the level of odor each day on a scale of 1 to 10, she will get a monthly odor pattern that may correlate with a particular hormonal change.

PERSONAL BENEFIT TO PARTICIPANTS:

This study will give a woman a better idea of what odor levels to expect at various times of the month, thus empowering her to make decisions accordingly. She may then chose to take the results to her gynecologist to discuss possible treatment to prevent future odor flare-ups. Understanding which hormones are at play during the various phases of the menstrual cycle, the gynecologist may shed some light on which hormonal levels are repeatedly triggering a generalized and/or vaginal odor flare up at a given specific stage of the menstrual cycle.

REFERENCES:

The article noted below, 'How does menstruation happen each month?', lists some of the hormones that control our cycle, such as Estrogen, Progesterone, Follicle Stimulating Hormone (FSH), and Lutenising hormone (LH).

It is hormones that govern this process. Hormones are a chemical substances, produced by an organ, gland or special cells, that re carried through the bloodstream to regulate the activity of certain organs.

It is the balance and interplay between these hormones which regulate the specific events that make up the menstrual cycle.


Factors like nutrition, stress, exercise, and belief systems can all influence how the hormones work and what we experience during our cycles.

We need to remember that these hormones are usually only present in small amounts and that it is the relationship between the levels of the hormones that is critical. When the balance is upset, any number of menstrual irregularities can occur.

For additional information: www.menstruation.com.au/periodpages/menstrualcycles.html

'Transient Trimethylaminuria related to menstruation' by Drs. Makiko Shimizu, John R. Cashman, and Hiroshi Yamazaki : www.biomedcentral.com/1471-2350/8/2

'Trimethylaminuria, Management, Treatment of Manifestations' www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=trimethylaminuria#trimethylaminuria.Management

Are you participating in the hormone study ?

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