Hello Everyone, I've just been lurking on this forum for a couple of days and reading the comments here. I am soooooo disappointed because I thought that I had TMAU, but yesterday I got my blood test results back and I am negative for the disorder. I have been struggling with this problem for longer than I even know, because there was a time when I didn't notice or understand the way people were reacting to me. I didn't understand the reasons behind the hostility and negativity towards me...but for the last ten years now I DO understand that it's because of my foul body odor.
I am so thankful to the people that are giving up information about their condition on this forum because I know this will lead us to an answer eventually. I have learned something from other people here already. Before I never really associated the black and brown stuff that comes off of my skin when I take a shower with this condition. I didn't know whether it was normal or not. Now I know that it IS NOT! Years ago when I first noticed the discoloration coming off my skin, the color was black. Since then I have soaked and washed my skin in alcohol, hydrogen peroxide, and even bleach. The color that comes off is brown now...and I don't know what to make of that, but I know I still SMELL. I've been pretty much trying to live like a person with TMAU for the past year or so. I take an epsom salt laxitive when I know I will be in public places and I've mostly been eating hah brown potatoes and bacon. These are suppose to be the lowest choline foods Somestime I think that I don't have as much odor, then other times I hear people complaining and it sets me back to square one. Of course, the doctors NEVER smell anything! One thing I do notice is that on the diet and with the laxitives I don't see people having as much of an allergic reaction, i.e. sneezing and sniffling like I used to.
Reading your comments on here and knowing that I don't have TMAU, leads me to believe that this is some sort of strange fungus or bacteria...or maybe even associated with having a parasite. I am going to try to tackle this on that level of thinking. I am gong to try to fast for about two weeks with just water for the first week and no cleanses or anything else. After that I will try things for ridding parasites.
I agree with some who think this may be contagious in some way. I remember my mother having a boyfriend whose body odor could be smelled even from the outside of our apartment. Maybe if it is proven to be contagious the doctors will pay us more attention and stop lying to us and saying that we don't smell!
The sad part about testing negative for TMAU is that I have no income and can't get SSI without a diagnosis. If there is a lawyer out there who is watching and listening or affected...please help us to get severe body odor problems recognized as a disability so that we can stabalize our lives and enable us to focus on finding a solution to this problem!
Also, as someone else mentioned...I'm sure if there was enough research and studies, the doctors could come up with a pill that could neutralize these odors if they are coming from the inside as I suspect.