It turns out that TMAU is much less rare than thought and that indeed its often not a fish odor - I think people should get the TMAU urine test done

 

If you check out my profile [on reddit] to see my last couple posts, one of them examines where the 1/40,000 figure for the incidence of the true form of TMAU (Trimethylaminuria) comes from. It turns out that this number varies widely between different populations that have been measured. For New Guinea, the figure for the severe form of inherited TMAU-1 is 1/400 people. My post explains how these numbers can be accurately calculated. This is not even counting TMAU-2 which is more common than TMAU-1.

In addition, I have found medical documentation that only the most severe 10% of TMAU cases involve a bad fish odor, the rest are either just generically offensive, or involve a 'garbage-like' smell. Link: https://nyaspubs.onlinelibrary.wiley.com/doi/abs/10.1196/annals.1384.011 (the link is only actually loading the PDF file some of the time for some reason). The source for this is the late Dr. George Preti, who was the worlds leading expert on TMAU, and had an odor lab with actual odor judges to sniff people who thought they had this.

The bottom line is that it sounds like TMAU may represent a much greater share of the malodor cases out there than was previously believed. The main alternative option would be that your apocrine sweat smells abnormally bad, and 99%+ of the time it would be the underarms (axilla) that are responsible for this. Axillary Bromhidrosis would be the technical term for this.

I have been saying that Bromhidrosis is probably a much more likely explanation for what people have than Trimethylaminuria. What I have recently found and reported above may change this. I made a recent post where I said that people need to figure out what part of the body the smell is coming from to figure out if Trimethylaminuria or Axillary Bromhidrosis is the issue, but I realize that many people simply aren't comfortable finding someone to talk to, who will then need to sniff them as well.

TMAU is diagnosed through a urine test. They simply test how much TMA is being excreted in your urine to determine if you have this, and how severe your case is. See this link for Monell Center (where Dr. Preti worked) for information about the TMAU test: https://monell.org/tmau/

In a video, Dr. Preti says its just a $40 fee to have the test done, which you then mail to them. This is only available to people in the US. If you are from another part of the world, do some research to find out how to get this done in your country.

If large numbers of people get the test done and report their results back here, that will go a long way towards understanding what is going on with most people here.

Abnormally bad smelling underarm sweat (Axillary Bromhidrosis) would be a much more treatable scenario than the true form of TMAU, assuming you have already tried the low choline diet at least briefly. If you get a formal TMAU diagnosis, then a doctor has antibiotic options that may become available to you. See my recent posts for the medical Bromhidrosis treatment options.

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