My Family Doesnt Know

Trimethylaminuria
#1

Hi,

My name is Maria and I joined this group today (Careplace) and I’m finding it even hard to write this thread. Life is not easy for me im 21 years old and i haven’t been diagnosed but i know i have tmau. I first realized it when i was 13 I was in junior high I was one of the popular kids at school. I was in my math class when the girl sitting next to me told me I smelled bad. I was shocked at first and I felt that she was the one with the problem not me it couldn’t be me. But as the months past i came to the realization that it was me I had an odor problem.

I was so ashamed, embarrassed and still am to this day. I went from having friends and going out and socializing and feeling happy to be alive. To being were i am today, once i realized i smelled bad i began to seclude myself from my friends. I stopped hanging out with them and they didn’t understand why I was pushing them out of my life but I didn’t want to be judge by them. I began to stay home and still do to this day.

I have never told my mom or sister about my condition because I feel that i can’t trust them. I love my mom and sis. But they have big mouths and they have many friends and i dont want there friends or our family members to know that I smell bad.

It’s getting to the point were I see that they are getting fed up with me they don’t understand how I use to be vibrate, happy, sociable when i was younger to being angry and wanting to be alone all the time.

I just can’t understand why this happened to me. It’s just getting worse I go to college and im majoring in accounting which i’ve just realized who is going to give me a job smelling like i do. I really dont see any hope for myself. I cry every night and ask god to end my life everyday.

I know I have to tell my family but I dont see how, i just know that sooner or later they’ll find out.

#3

Hello @Mery ,

I cried every night. We all did and some of us still do. I asked God, why me too. We all did. What I am trying to say is: You are not alone dear. We are all here to help.

Please stick with the diet, the probiotics, and the supplements. Stay on them consistently, and continuously. Stay strong and things will get better.

Brenda

#4

Hi!

I know how you feel. It’s so awful at first. It can be awful later on, too. Right now, I keep to the diet. I put myself on the list for Dr. Preti to be tested. And most importantly, every day I practice forgiving myself. I used to always be so tense–wondering why this person was leaving. Why was that person getting up? Did I smell bad? When that woman mentioned that something stinked, was she talking about me? So now what I do, I say, I don’t know for that it’s me, but if it is, I forgive myself.

I hope this help.

Do come here for support!
We’re here for each other!

#5

Maria,

I’ve been where you are and I think the first step is to share you
informtion with someone. Maybe not your family but sharing helps you not to
go crazy. I as well is in school and I’ve told my self the same thing you
have, nevertheless, I refuse to allow this issue to keep me from reaching my
goals in life, so continue to go. I pray the same prayer and God answered
"Request denied". Althrough everyone hasn’t embraced me some have. I have
had many days where I cried myself to sleep and other times I felt like I
was in a time warp. So much pain and seem like no one understands, keep
praying and trusting in God…

I spoke me my manager today and he ask me did I need time off and said that
If anyone bring a issue to him concerning me he will tell them that he know
already, I felt good to get it out in the open. I guess my situation is a
little different, I had two operations, one I know was faulty and the other
one was to fix the problems that the 1st one did. I’m not sure if my case is
medical or a body odor… I started having problems when I got pregnant
with my first son which was nine years ago. I did not have it before then
but I notice that things change after that… anyway, hang in there and
hopefully you will come across someone that will listen and prayer with you
to keep you strong…DON’T GIVE UP…

Penelope

#6

Hi Maria

The quickest way to find out if you have TMAU is to email HBMRI and request a urine test kit. They’ll send you one free. Just follow the directions, its easy to do. You’ll have to overnite the urine sample back to the lab and it will have to be frozen, on dry ice, in a styrofoam container. The test cost $400, send a check with your sample, and about $90 for the mailing materials and postage. Unfortunately, it takes anywhere from 2-12 weeks for the results, but its still quicker than the other options.

HBMRI is the Human BioMolecular Research Institute and Dr. Cashman is the senior researcher there for TMAU studies.

Getting tested is important because if you don’t have TMAU (which is very rare), you could have some other ailment in which the “TMAU diet” would not help reduce your odor. Just make sure you eat as you normally would for the week leading up to collecting your sample. Eat eggs, seafood and legumes to ensure accurate results. You can go back to an odor reducing diet afterwards.

Good Luck Maria and know that you are never alone, there are many others just like you!

Kevin79

#7

Hi Kathi

Does Colorado Univ do a straight urine test or a choline challange type urine test (like Monell) where you consume prepared solutions with choline
mixed in?

Kevin79

#10

How long was this? Last I knew, they charge $150 and it takes a couple
months to get results back.

#11

I meant to ask how long ago was this?

#12

UC sent the choline mixture and I put it in orange juice. I had to measure my output and freeze it over a period of time. I had it packed in dry ice and shipped to UC.

#13

At UC I paid $100, I think, and it took about 3 weeks. It depends on how many are ahead of you. Preti accepts their test results since he is affiliated with them.

#14

It was in May of 2007

#15

It may have been $150, but I keep thinking $100.

#16

I don’t know. I’m still in the process of contacting somesome to be tested.
I’ll keep you updated.

Penny

#17

Has anyone ever felt that they absorb the smells around them and then secret them out.

#18

I’m having a COMPLETE suicidal day. I’m funky as hell today. I’m trying a new diet to see if I get some results from it. And from everything I have been told, the odor will increase before it decreases. So hopefully this is a good sign.

I stopped at the gas station on my way to school and the poor lady behind the counter said (to herself) “Oh God what is that?!?” as she sniffed and rubbed her nose, I even think her eyes started to water. I could have just gone home and put a damn shotgun in my mouth. Is someone else having a better day then me??? I hope so.

#19

Mine is going ok. I’m off work today so I guess it really doesn’t count. I don’t get too many days like that or they’re just a couple out of the week. Usually its just looks and gestures.

#20

Not today for me but I had one on Tuesday. Sometime it is hard to stay focus
or stay happy. Please let me know what diet you are trying… I’m trying to
change but Lord know it is a difficult task… Hang in there and pray. I
have the same reaction at work, school, and play. it seems like I always
have a monkey on myback but trust me the people that are talking would not
be able to handle what we are handling at the moment. I will be praying for
you. I have contact Dr. Preti and HMRBI for testing.

PB

#21

Have not noticed that except when cooking onions, the clothes (and hands, at least) pick up the smell.

#22

Hello Maria,

I think you may be looking at this the wrong way. Have you considered that maybe when you smell what is “around”, you are, in fact, smelling yourself? Often times when I walk by something i can smell my own smell kinda reflected off of the surface. Also when passing under a ceiling fan or walking into a breeze, or stepping into a new room, I’ll catch the odor for just a few seconds. It takes a while to realize that the smell is you.

This has been my experience

Kandyce

#23

Google TMAU testing. University of Colorado should come up as one of them.