Trimethylaminuria community

Trimethylaminuria TMAU, formerly called Fish Odor Syndrome, is a metabolic disorder where the body lacks enough enzyme to breakdown trimethylamine.

Maria's Story

Written by mariadelatorre, published 14 days ago.

I am a 58 year-old married mom with two sons living in Miami, Florida.

I have personally struggled, through-out my life, with a difficult to control body odor condition that affects me personally, and members of my family. It has been particularly difficult, during a period of eight years, when my 14 year-old son started to show symptoms of extreme body and breath odor after meticulous hygiene efforts.
During this age, when all adolescents begin to explore a new phase of social interactions with their peers, his odor was the first thing perceived by others and it frequently did not allow others to see the person behind his odor. His odor was so intense, it would fill a room in a matter of seconds with only his nasal breath exhalation. The chemical odor produced is a very foul and “unusual” odor, and has a strong fixation that attaches to furniture fabric and walls, making it almost impossible to remove. He suffered with this during his four years of high school and first four years of college.
As parents, my husband and I pursued medical advice and all possible medical avenues to try to find answers. For eight years, we faced one dead end after another, with well-intentioned medical doctors
and specialists. As a result, I turned to the web to research medical papers in hopes of finding answers. After reading numerous articles, heart-wrenching posts by other body odor sufferers, and watching various newscasts, I began to hear of a medical condition called trimethylaminuria (TMAU).
At the age of 21, my son and I immediately printed a copy of an article written by Drs. Elizabeth Shephard and Ian Phillips (Phillips, 2007) and took it to his physician, who prescribed the necessary antibiotics and lactulose. He immediately began to follow the protocol recommended on this website, which includes a low choline diet. In a matter of a few months, his odor was able to be controlled, though there is no cure or even a healthy treatment yet researched. He further confirmed his suspicions by testing positive for TMAU.
Unfortunately, the protocol prescribed for this rare disease is unhealthy. It requires choline to be removed or limited from a persons every day food diet. Choline is an essential nutrient, and many healthy foods cannot be consumed without them triggering symptoms. Even though he has followed this protocol for six years now, any stress, or break in diet with friends, or for any other unknown reason, his odor can be triggered unpredictably.
The common experience from most sufferers around the world is limited access to TMAU testing, primarily due to the test only being offered in certain countries such as the United States, Canada, and United Kingdom. However, most physicians in these countries, and others, have never heard of Trimethylaminuria. As a result, only sufferers who have access to the internet, would only then find out about its existence. Once sufferers learn about the disease, they are then faced with the challenge of trying to convince their physician to prescribe the test. Unfortunately, this request is normally met with resistance from physicians who are not familiar with the disease and are quick to dismiss the problem as
psychological.
There are so many sufferers around the world who do not have access to TMAU testing or the basic information regarding Trimethylaminuria due to factors such as internet access or language barriers. The protocol and treatment for Trimethylaminuria is unreliable, and basically an unhealthy “temporary fix.”
Understanding these shortcomings and being fully cognizant of the tremendous need for genetic research, I created an international charity, MEBO Research, Inc. (referred to as “MEBO” or “Charity”). The mission of the Charity is to focus efforts on uniting sufferers and experts from around the world. The Charity provides relevant literature for patients in a daily blog and spearheads TMAU test offerings with laboratories in different countries so that sufferers around the world have the opportunity to test.
Additionally, one of MEBO’s priorities is working with scientist experts from around the world so that further research can be conducted for better treatments or possible cure.
Reference:
Phillips, I. (2007). Trimethylaminuria. National Center for Biotechnology Information, U.S. National
Library of Medicine, GeneReviews, doi: Bookshelf ID:NBK1103 PMID:20301282

Written by mariadelatorre, published 14 days ago.