Trimethylaminuria Member Introductions

hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.

Hi,

Can anyone tell me what foods are low in choline. I don't know what exactly to stay away from. I am probably depriving myself of foods that are healthy. I have tried everything. I go to the dentist every 3 months for cleanings but I still have an odor. my dentist says it isn't coming from my mouth. I don't know where to turn. I would love to communicate with others who are going through the same thing. it is lonely and depressing dealing with this. stella

Hi I’m Sherlyn, for as long as I can remember I have been an outcast at school, family functions, social activities and work. Finally into my 30’s I realized (after being in the working world for a few years) by the reactions and comments of others that I had an odor problem.

Sometimes I could get a faint wiff of the odor…mostly I just knew because my breath was so bad all the time…and I usually smelled like what ever it was that I had been eating. Or a garbage or soury cheese smell…it is humiliating.

I have yet to be tested. But that is my goal. And to make some friends…

I’m a 29 year old Science Teacher living in Bridgeport, Connecticut. I’ve been living with TMAU since I was in sixth grade. I have had some success with the diet, but must keep it very restricted. I’ve tested positive with an enzyme function of only 11%. I was tested by Dr. George Preti last summer in Philly. I love what I do for work, I love my wife and two dogs, and I refuse to let this condition change that. Only when one lives outside his/her comfort zone is it possible to truly live.

Hi, My name is Gabby and have been diagnosed with TMAU by ACH.

Have lost my job, my home, and doctors have told me I’m hallucinating the harassment AND the odor.

Looking to regain some normalcy in my life and join with other sufferers for support and friendship.

I am interested in this condition because I have the symtoms with body ordor. I have tried many soaps and deordorants to cover the ordor which only helps some to the time. My symtoms keeps me for being the happy person I should be. I am depress sometimes when I think about the ugly remarks I would hear people say about me. I supress the feelings for a while but they return only cause me to Isolate myself from groups.

I want to find a fix for this disorder. I want someone to make an enzyme tablet to help us digest choline. I have suffered long enough.

I have been working within the TMAU community since the early 1990’s, before I even know what this “awful” condition was called that I had. Since that time I have changed my “attitude” and I walk as a “winner” in everything I do, and I realize that TMAU may have some limits on my life, but I could have something much worse or more painful. Life is too short as it is, you may as well live----and live to the fullest!

I am a 38 year old mother of three daughters 18,14,& 8 I have suffered 12 years with TMAU and I have lost everything an everyone I loved because of this. My self esteem is shot if not for my children I would not remember what I was like before this journey with TMAU.

To me this was an absolute death sentence but 2 years ago I got a name and diagnosis and knowing what was going on with my body and that I was not alone I felt less like an corps and more like a human living being again because their are some intelligent, loving, wonderful people that have the same thing that I have. People can be very rude, malicious and disrespectful to TMAU sufferers some due to unawareness and many ignorance.

Some days I feel like giving up I want to eat what I like, tired of antibiotics, chlorophyll, acidophollus and I would love to use soaps that remind me I am a women with out smelling like burning soap.I am so glad I can come to careplace because on those days and feelings I can come here and vent without being judged or misunderstood.

Glad to be back. Trying to keep my head up.

Hi everyone, my name is Dani and I suspect I have had this condition since childhood. No one has told me I smell directly since junior school when kids say that sort of thing to each other anyway but through overhearing other people's comments/hints over the years and the countless fragrant products I have received for birthday presents I do not doubt I have a problem…Its not something that can be washed away even though I have showered and showered but people don’t really get that. That’s why I’m so glad to have found out about TMAU and this support group. Hoping to find out if there is anything I can do to make this painful situation better. Is it worth trying hard to get a formal diagnosis?

I think I have the seem probably too I have been to obgyn and to a urologist but they give meds but nothing helps. I was wondering is there a doctor in birmingham alabama that can help me. If anyone out there knows a doctor that can help me please message me.

Hi, My name is Gabby and have been diagnosed with TMAU by ACH. Have lost my job, my home, and doctors have told me i'm hallucinating the harassment AND the odor. Looking to regain some normalcy in my life and join with other sufferers for support and friendship.

I have been living with this condition for over 10 years. It keeps getting worse. Every time I go out to the store or go somewhere I hear the remarks "what stinks" Yesterday I was in the hair salon and a little boy said he smells dirty diapers.

It appears soon after I walk into a store. Everytime I walk into Macy's in CT they call over the loud speaker for housekeeping. It happens every single time

I pull up to the drive up for cofee at Dunkin Donuts, I over head one girl say to another that woman stinks. I am inmy car and they still smell me. I feel like a freak.

Hi everyone,

My name is Petra, I am almost 40 and I have this disease for almost 25 years. No need to explain how much suffer and pain that I am living with it. Now I have a big problem about my career. I am going to nursing school and I study hard for 4 years and just almost finish the prerequesitses. I am now not sure if nursing if good for me. I am so afraid that they will remove me from the program if the patiences or other students complain about my stinky body smell.

I work so hard for being successful but now I don't know what to do. I want to be a farmer but I don't have a land for farming. I just don't know what I can do for surviving without having people reject me. Thank you for reading.

Petra

I have a body odor that doesn’t stay away even after a bath. In about an hours time the odor is detectable again, people at work make fun of me daily. I have visited doctors and they don’t take me seriously. My siter recently saw a story on tv about trimethylaminuria or malodor syndrome. I wondering if this is what I have. I’ve also heard of bromhydrosis, and I do sweat alot, so I don’t know where to start. My odor ranges from a garbage to fecal smell.

Hi, I haven’t been on the site in a while but I too have this problem, and it is so distressing.

I remember I was glad to find this support group a couple of years ago, and was at the time possibly going through a lay off which meant would have to return to an office outside of my home. This filled me with so much anxiety I can’t explain. I suffer is best way to describe it with a body odor problem as everyone mentioning here does.

For years Working in a very public place***hospital/office was so grueling/distressing fearing I would be fired, or sent home for smelling up the place. I have been working at home, thank our Lord/saviour, for several years now and still when going to my place of worship, lets say I have good days and very bad days. Yes I too smell like rotten fish, dirty feet etc and it only takes about a couple of hours to start up after I bathe.

I have tried using Hibiclens as a antimicrobial cleanser under my arms and on my scalp. I only use liquid dial antibacterial soap. I have run through tons of antibacterial hand sanitizer, and alcohol when I was working in an office just to clean my desk and try knock out any smells coming from me. the deodorants I use must have a really high aluminum zinc content which probably isn’t good for me but I don’t know what else to do.

Yes I often heard the comments “what’s that smell”; when I did work in an office building one time someone in the office had dropped a small piece of onion in our area, before they found out where the smell was coming from, the girl in next cubicle acted as if she was looking for something on my computer and then I heard her tell another coworker “it’s not her this time” which was good, but didn’t make up for all the others.

I would run home on my lunch break to take a shower. Life is so full of anxiety that yes I tend to isolate not go to invited functions and hurry away from others after I leave place of worship.

So yes I know what others are going thru and sadly my family don’t seem to smell what others smell. almost think I need to see a therapist sometimes but somewhat shame to go.

Love and prayers to everyone and know that one day this won’t be.

Hello,

Call me Skido. I have endured this condition for a number of years. I am in my late 60s. This condition can be devastating - I have been down many emotional paths with this condition. I find myself now "living" for me and going on with life; and if I get reactions from anyone, I have an 'oh well' attitude. I know I have scrubbed, deodorized, eaten low choline, dressed in clothes laundered according to TMAU guidelines, taken recommended supplements; I feel I have done all I know to do -

so 'oh well' !!!!!!!! I am doing well with it.

{even to mimicking their comments, mannerisms,etc.)

I just grew tired of the 'stuff' and am too 'social' to become a recluse.

I am from North Caroline and have had this problem since my early college years. I swear I used to get told that I smelled good and fresh all the time until I went to college and started to pick up small hints from people.

I thought something may have been wrong but at the same time I didnt because I knew that I showered all the time so I just brushed it off. I didnt find out that I had this condition until I was maybe 26.

It definitely sucks and has obviously taken a toll on my and our lives. I cant seem to make and keep friends like k used to…well not any females ones lol.

I am totally at the point now where I dont care what people think and I still eat what I want to. I have been through those depressing years and times where I have wantedd to kill myself but I feel like I came out even stronger. I let folk make all the comments they want to because at the end o the day they are the ignorant ones not me because there is nothing I can do.

Funny and true story though, I also used to be an exotic dancer with this disorder. I have even been in a club where they may walk past and spray air freshner in the air or may hear remarks from people that work there but it was never from customers and honest to God above I still made good money.

It all just perplexes me and I wish I didnt have this. I know I havent had it my whole life but its sickening at times and I just want to live a normal life.

I have a 2 year old well she’ll be three soon.

I have tried antibacterial soaps, hibiclens, chloro fresh pills that I purchased on ebay and even the charcoal and nothing has helped. I may try to decrease my diet because I eat anything I want to and pay no attention to the colline in the foods.

Llast but not least I have the fishy odor sometimes but it seems like the odor I have is more fecal like. I have smelled something so strong at times and would compare it to sewer. I eat a lot and I am small framed but I eat large portions of things that make the odor worse because it seems like nothing has worked for me so I said f it.

Continue to be blessed. Oh yeah I feel like this condition stops me from getting jobs also and stops me from being self sufficient like I want to be for me and my daughter. Its a condition we cant change so I see it as discrimination against us all and I thought about calling eeoc or something to where this condition cant be discriminated against like other conditions people cant change.

But yeah yeah of course no one wants to be around a stinky person or wants to subject other people to be around a stinky person while they try to do their job. But we’ll see cause I definitely am not trying to be on welfare and public assistance. If its needed yeah okay I understand but I just want a good job and I wanna be able to give my daughter great things.

I have tmua too and I suffered from it A LOT. I hope i can find someone who is like me cuz i feel so lonely now

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