Confused.. do I or don't I?

Trimethylaminuria
#1

I think that over the past 10 years I have asked about 50 people if they notice a bad or abnormal smell coming from me.

2 of the 50 have replied yes. My family is convinced that the whole situation is in my head, so I have no understanding in that corner of my life. My boyfriend emphatically denies the presence of a bad odor. The past four years, I’ve been okay… I didn’t even think about the presence of an odor… But recently I’ve gotten clean (off of painkillers) and after the detox, this feeling of uncleanliness came back tenfold. I hear people talking about a smell and I go into hysterics.

I literally have panic attacks. And my days are filled with an internal argument of whether or not I have a problem with smelling bad. Is it possible that my family and boyfriend and close friends don’t want to hurt my feelings or just cant smell anything? I don’t know and thats what kills me. I’ve heard that there is a test that you can do but I know that its for the fish odor thing and I know that the smell isn’t fishy. I hate to think of what it does smell like because I personally do not smell it.

Any advice? I’ve heard of the antibiotics thing but I feel like any doctor I talk to would think that I was ridiculous.

Help! I’m glad I stumbled on this forum. My heart goes out to those who are struggling with this disorder…

Stay strong!

#2

I’m the same way. I know I have a bad smell. Its obvious with the looks on peoples faces.

Sometimes it isn’t but most of the time it is. Family and friends will deny it because they do care. Or maybe they’ve gotten used to your scent.

TMAU comes in all scents. I’ve heard tons of negative comments. Wet dog, burnt tires, wet rags, and the all time favorite, rotting fish. Maybe what you have isn’t TMAU. Only way to find out is to get tested. Very expensive and not available in some countries.

Doctors will always look at you like you’re crazy and say, I don’t smell anything. Smh. But it’s good to ask whether it’s safe to take charcoal, antibiotics, probiotics or chlorophyll.

You’re not alone. Hope it gets better for you.

All the best.