Hi everyone. I really don’t know what to do. I’ve tried everything thought possible and spent many cash trying to get help but it has not got any better. It seem like it got worst because of the many reactions I got. I’m on a diet where I eat mostly white rice, flour and chicken. I avoid fish, red meat, eggs etc and it seem to got worst. I’m really out of ideas. I take riboflavin tablets, charcoal tablets, lactulose liquid and senokot tablets and it seem things are worst than ever. I really feel bad and I’m so embarrass and I want so much a social life. Please give me ur advice, I know sometimes I hear the same things over like don’t give up etc… but I just want to hear form someone who know what I’m going through because no one knows what I’m feeling. At times I just need someone to understand, someone to hold me and assure me that they are there for me, but I’m so alone with this embarrassment no one know how I’m feeling.
did you take the antibiotic before did the diet.
Don’t ever feel you are alone. Each of us are going through some of the same things you go through. We are brothers and sisters in this respect. Let me tell you, I work in an office with 30 women and 1 man, there is not a day that goes by that someone does not say “what is that smell” or the lastest is that I smell like “brocolli or spinach”. They have even gotten the building crew in on it (our office is being redecorated) and they have told these men that I smell bad everyday. I have told my supervisors about the treatment I am getting and they choose to take a “we haven’t had any reports” attitude. So while they are turning their backs on this situation, I am mentally getting beat down everyday. Also at home, the neighbors are not kind either. I live next to a three family house and my windows are right next to the third floor everyday they make comments of “do you see how she smells”. This is every single day. At times I don’t you what to do or where to turn because I am mentally, spiritually, and physically tired of being put down, talked about, and hated everyday by people. I wish that someone would just take into consideration that I am a neat, clean, intelligent, attractive woman who would give anyone the last dime she had in her pocket it they needed. Any positives that pertain to me have been over shadowed by this smell issue. So NO! You are not alone! Absolutely not! I think we as a group need to be more in touch with each other so we don’t get to this point. It is a feeling of complete isolation and hopelessness. If anyone wants to get in touch with me on a daily basis that is fine. We need each other because of what we are going through. My e-mail is ggadsden1@optonline.net. We all need daily pep talks, friendships, and help from each other even if its on the web.
Hi Betsy,
I have the fecal odor & I’ve been doing colonics for 4 yrs. & my therapist told me to stay away from white rice,flour, any thing like that just harbors bad bacteria that settles in the intestines & gives yeast. She told me to eat brown rice,veggies, fruits,digestive enzymes,sea salt,coconut oil. I also take papaya, acidophilus digestive enzymes, chlorophyll, liver detox.
I also eat my chicken baked I sometimes use coconut oil when baking.
Eat lots of fruits & green veggies or veggies of ant kind. Drink lots of water from a brita pitcher, it takes away the nasty things from our tap water. Put water in your brita pitcher which comes w/filters & the filters clean the junk out of the tap water.
Even tho I’ve changed my diet, I still have fecal breathe & bo.
It’s b/c our enzyme fmo3 in our liver is dysfunctional.
I get a colonic once a month but it still hasn’t helped to alleviate the odor.
I just thought that I’d give you my 2cents worth & I pray that anything that I’d said will help you.
GOD BLESS,
RON
Betsy8482 Trimethylaminuria-cpt10127@lists.careplace.com wrote:
Gee what you said moved me. Its frustrating being this way especially when you try so much. And nothing works. Its depressing and you cant find anyone around to relate to you. One time i heard my own mother say if she was me she would take a good bath. As if i dont bathe. One day our cat popped in the house and i told her i smelled something and she had had a bad day she said that im probably didnt wash myself right and thats what im smelling infront of people. I had people laugh at me at my new job. I put my head down in class so that i could be marked there. I dont ask questions even if i dont understand i force myself to figure it out on my own or hope someone askes whats on my mind. And dont go the classes at all if attendance isnt counted because i hate the looks and the way people react to me and dont want to sit next to me. I had teacher last semester obsessed with smells and would talk about how horrible prostitutes smell and this girl turned around and looked at me as if i were a prostitute because i smelled. I’ve had this boy in highschool call me shit mouth. Which honestly i blocked so much out then it wasn’t to recently i processed what he meant. It’s a struggle on a day to day basis. I rarely make future plans because im trying to get through the day. I look forward to going to bed. I dont open my room windows. I once had a little girl on her bike with her mom passing by say to her mommy whats that smell whats that smell mommy. And i was way in my house. But you know we are people like everyone else. And no matter what people may say or do i am breathing and alive so that means i deserve to live. I going to be this way unless someone starts paying attention to my condition and finding a cure. I cant change it. I just have to take it one day at a time. Even if that means crying every night. We’re all attractive, intelligent, i at one point had one of the most outgoing personalities but look at me. I’m forced to be introverted. Its a humilation but thats life we take it as it comes. I never thought that i could be this way this long. I thought i would die if i spent another moment like this and i tried to do everything in my power to change it. Its now been 8 years. But im here. I read something someone wrote on here God wouldnt put us through anything we couldnt handle. And there are so many of us on here. We should be support systems because we know how you feel. And betsie i feel just the way you do i have no one to talk to i talk to myself. I hold myself when i cry. No one around me understands but me. I know they would not spend a moment in my shoes. My email address is nowiknowtmau@yahoo.com
Thanks very much for your replies. I visited the doctor recently and I am to so a blood test to test the functioning of my liver. My doctor and myself don’t know if it will assist. This is a new doc for me and he too believes that im not smelly and that im just obsess with my body odor. However he was very nice and understanding and im looking forward to what the test will show. I do hope to find an answer to this because I can’t take the embarrassments any more I have a life to live and I want to live it happily.
I got the result from the doctor and my liver and kidneys are working well. The test says that everything is fine. Now I don’t know what else to do.
Did you actually send your urine sample out to test for tmau. Because you can only detect in the urine. You know when i dont know what to do. I tell myself i do what i can and the answer will come in time.
No i did not.