This odor varies depending on many known factors, including diet, hormonal changes, other odors in the space, and individual sense of smell.
TMAU is a life-disruptive disorder caused by both genetic and environmental factors. Living with TMAU is challenging, and it can adversely affect the livelihood of adults who have it and their families. Children with the condition could face rejection or a lack of understanding from peers during school or at play. There are various online support groups that have been created to help those in with malodor issues such as TMAU. The Yahoo TMAU support group 1 is listed in the National Institute of Healths publication "Learning About Trimethylaminuria" 2 "Courtesy: National Human Genome Research Institute."
Measurement of urine for the ratio of trimethylamine to trimethylamine oxide is the standard screening test. A blood test is available to provide genetic analysis. The prominent enzyme responsible for TMA N-oxygenation is the FMO3 gene.
TMAU is a rare disorder. There used to be very limited medical knowledge readily available about most rare disorders or how to get tested for them. However, health care professionals can now get helpful information from genetic and rare disorder databases.
One of the tests for trimethylaminuria is a urine test for elevated levels of trimethylamine.
A similar test can be used to identify carriers of this condition - those individuals who carry one copy of a mutated gene but do not have symptoms. In this case, the person would be given a high dose of choline (one of the precursors of trimethylamine) and then have their urine tested for elevated levels of trimethylamine.
As of June 2008, one of the only people that can treat and diagnose trimethylaminuria is Dr. George Preti, at Monell Chemical Senses Center located in Philadelphia, Pennsylvania.
Currently, there is no cure and treatment options are limited. Although there is no perfect cure for trimethylaminuria, it is possible for some people with this condition to live relatively normal, healthy lives without the fear of being shunned because of their unpleasant odor. Getting tested is an important first step. Ways of reducing the odor include:
* Avoiding foods such as eggs, legumes, certain meats, fish, and foods that contain choline, nitrogen, and sulfur
* Taking low doses of antibiotics to reduce the amount of bacteria in the gut
* Using slightly acidic detergents with a pH between 5.5 and 6.5
* At least one study5 has suggested that the daily intake of charcoal and/or copper chlorophyllin may be of significant use in improving the quality of life of individuals suffering mild forms of TMAU, the success rates vary:
o 85% of people tested completely lost their "fishy" odor
o 10% partially lost their odor
o 5% kept the scent
However, whilst they may be beneficial in some cases, many people in trimethylaminuria support groups who have tried charcoal and copper chlorophyllin have reported disappointing results.
Also helpful are:
* Behavioral counseling to help with depression and other psychological symptoms
* Genetic counseling to better understand their condition
Jessica: Sorry! i have TMAU!