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Trimethylaminuria (TMAU) is given its own page since it is currently the only recognized and accepted 'systemic' body odor condition by the medical community. It was detected in 1970 by a group of doctors in Colorado who tested a child with other health issues. The child was also said to have a 'fishy odor' at times. They performed a urine test and discovered high levels of trimethylamine (TMA). The University of Colorado, Denver, still has TMAU testing available today. Very few other labs currently offer TMAU testing. In the US, HBRI in San Diego and the Arkansas Children's Hospital are known to do TMAU testing, as well as a thorough 'body odor' examination at Monell Chemical Senses Center in Philadelphia. A full list of known international TMAU labs can be seen in the list at the bottom of this page.
Primary Trimethylaminuria (commonly known as TMAU1) is one type of 'FMO3 deficiency'. It is a genetic metabolic disorder currently taught as being inherited in an autosomal recessive manner. The parents of an affected individual are obligate heterozygotes (carriers) and therefore, carry one mutant allele. Heterozygotes (carriers) are supposedly asymptomatic (not affected). Mild or intermittent symptoms can sometimes occur in carriers of FMO3 mutations.
This deficiency of FMO3 enzyme results in an inefficient FMO3 function with a failure to metabolize the chemical Trimethylamine(TMA), which smells of rotting fish. Frequently, major FMO3 substrates include sulfur-, nitrogen-, selinium- and phosphorous-containing chemicals may also not be properly metabolized by the FMO3 enzymes, and thus produce an odor different from fish.
Trimethylamine (TMA) is a chemical created in the intestines by a few bacteria during the digestive process of foods containing choline. TMA is a chemical found in fish, sharks and rays, molluscs, and crustaceans, and is the main odorant that is characteristic of degrading seafood.
Secondary Trimethylaminura (TMAU2) is an acquired form of TMAU usually involving an overproduction of TMA by gut flora in a patient with normal FMO3 function (i.e. does not have an FMO3 deficiency). Experts believe that TMAU2 from overproduction of TMA by bacterial overgrowth in the gut can be experienced for many years, but if the correct antibiotic therapy is applied, it can be cured by eradication of the bacteria responsible, though the bacterial overgrowth tends to return. Secondary TMAU, or TMAU2, has been recognized for many years, particularly in the UK, although much of the TMAU interest has been in the inherited metabolic disorder FMO3 deficiency, TMAU1.
Psycho-social consequences : Socially offensive metabolic odor significantly interferes in the affected person's social life, such as in school, work, or personal relationship. This social crisis usually results in profound psycho-social side effects, as portrayed in our community written Our journey: overcome the stigma of the invisible monster. written by sufferers as a fund-raising tool for MEBO Research, as well as the two books, When Bathing Is Not Enough, by Alice Mata, and Carry Wilson's autobiography, The Foul Body Odor that Amost Killed Me. Since this condition tends to initially become more symptomatic in adolescence, the affected person is for the most part rejected by his or her classmates and peers, and usually in a very cruel manner resulting is social isolation.In adulthood, most are harassed in the workplace for the same reason, and are usually the first to be terminated from employment as a result, frequently independent of work performance. These social conditions produce profound psychological injury resulting in severe symptoms of depression and anxiety that prevent the affected person from being a productive member in society. Many ultimately have resorted to dependency on social benefits, such as unemployment compensation and/or Social Security Disability benefits.
According to some experts, 40% of persons affected with body odor conditions report they have remained housebound for at least a week at a time out of fear of offending others. Two-thirds have contemplated suicide, and a third have attempted it. The vast majority suffer from depression or some other mental disorder, and sometimes substance abuse, since most develop a very lonely lifestyle without relief in sight at a very young age, and are struck by the overwhelming distress that comes with being socially ostracized. Erroneously, due to total lack of social awareness and understanding of this condition, most in society perceive it as an offensive lack of personal hygiene on the part of the affected individual. As a result, people normally tend to respond to the sufferer in an overtly or covertly hostile manner. One of the most traumatic aspects of this disorder is that the sufferer has no recourse in the medical system to find treatment and a cure, and finds it difficult to understand why the medical community is not well versed in this condition.
One of the most traumatic aspects of living with this disorder is that the affected person has no recourse in the medical system to find treatment, and a cure is nowhere in sight due to lack of research in this field for lack of funding. It is difficult to understand why the medical community is not well versed in this condition as a result of there being little dispersion of the limited research information sporadically published in professional journals. Thus, a sufferer very rarely receives the necessary appropriate medical attention and treatment to control his or her odor.
* The latest MEBO TMAU Urine Test program ran from July, 2016 until June, 2017. This program is currently re-structuring.
Please subscribe to our Blog if you wish to be notified when it is restarted.
MEBO's goal in creating a TMAU Urine test program, is to provide low-cost testing for all sufferers.
HISTORY OF THE DIAGNOSIS:
CURRENT TMAU ADVICE
*Low Choline Diet : avoid eggs; liver; kidney; peas; beans; peanuts; soy products; brassicas (brussel sprouts, broccoli, cabbage, and cauliflower); and lecithin and lecithin-containing fish oil supplements. Trimethylamine N-oxide is present in seafood (fish, cephalopods, crustaceans). Freshwater fish have lower levels of trimethylamine N-oxide.
TMAU REFERENCE LINKS
TMAU gene card
Mitchell/Smith 2003 Overview
OMMBID TMAU abstract
Genome.gov TMAU article
Krueger/Williams 2007 overview of FMO
Orphanet 2002 TMAU overview (PDF)
Orphanet 2009 TMAU overview
TMAU : 11% Ecuadorians in random test
TMAU diet & protocol info
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