Date:   2/19/2008 6:27:05 PM ( 17 y ago)
Hits:   5,721
URL:   https://www.curezone.org/forums/fm.asp?i=1115210

I've tried so hard for days to sign in to this website just so that I may respond to you. I had difficulty, first because of cookies, and then because I lost track of what user name I used... Nonetheless, I'm so happy to be able to speak with you.

My son has the same odor issue as you, and he is going to send his urine sample to Dr. Preti in Philadelphia for a diagnosis. However, we are confident that he does have some form of Trimethylaminuria, which got really bad around his sophomore year of high school.

Why don't you tell me a little more about yourself if you like but don't feel pressured to do so. I have LOADS of research information on TMAU that has helped my son TREMENDOUSLY! It has not completely eliminated his odor, and it kicks in really bad if he breaks the diet or stops taking the supplements, as prescribed in
http://www.genetests.org/query?dz=trimethylaminuria.
However, with the "controlled" odor, he has managed to have a great social life in his later high school years, and has now graduated from college with his BA in Psychology. He's starting a great job while he studies his Master's Degree, while he still maintains a good job.

I hope that by telling you about this, you can feel inspired to believe that there really is hope out there. The obstacle is overwhelming when the odor is at its uncontrollable peak as it fills a huge room-full with only one's short-term presence, but with good control techniques, the is manageable to get it to a tolerable level. After all, there are people out there who have plugged up noses and can't smell very well, and when the odor is mild, they have no clue...he, he, he.

One thing that you need to adapt is a great sense of humor. Humor heals so much! It's best to stand back, and look at the odor for what it is, IT IS NOT YOU, but rather an extension of you. It's like your hair, for example, that you have to wash, cut, style, etc., and it can make you more or less attractive, BUT IT IS NOT YOU!!! Once you put this into perspective, you begin to make your condition more manageable without it being SOOO overwhelming. Then, you need to move on beyond that, and get in touch with the REAL YOU. Once you SOMEWHAT manage your odor, you need to step out and interact with others. Sometime, we push people away just because we fear rejection.

I've often seen that some of the most wonderful people in the world don't necessarily have the greatest appearances, and therefore have been "forced" to "develop" their personalities. To be physically perfect can lead us to get lazy, to rely on our appearances, and we let the inside lay dormant. Look at this condition as a challenge, pretty much the same way people with physical disabilities deal with theirs. I don't seem to have this odor problem, but I do have other serious physical disabilities - so I am an authority on this. I think that is what has helped my son develop into such an attractive person that his friends flock to him, especially when they feel the NEED a good friend.

I would love to talk to you some more, but it looks like this is getting too long.
Please keep in touch.

mpdela

 

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