Trimethylaminuria Member Introductions

had this all my life

I think I have tmau, I have all the symtoms. I just found out about this today. I would like to know how to control it.

Passed by a news report about this condition and wanted to know how people who don’t have it can help, advocate or be some kind of support in efforts to further research on treatments and cures.

i am forty-seven years old, and i have suffered with what has come to be known to me as tmau. it started when i was in grade school . i too, have been accused of not caring about mysrlf, of not bathing. i am believing the Lord Jesus for a healing. he just healed my heart of a faulty valve all because i strpped out on faith and threw my heart medicine away and used his words of faith. if i have the faith of A grain of mustard seed…if i believe that what soever i ask, i shall recieve… i asked, expecting a healed heart and i got a healed heart. this condition is a hard thing to live with. and even though i wanted to stop living, i kept on because i wanted to go back with Jesus. i’ve gone through the depression, the rejection, the look…“that” look. people have moved away from me, i’ve been called names, teased, laughed. but the worst thing that i have experienced with this condition was the loneliness. it is deafining. i just want you to know that there is no condition, sickness or desease that Jesus can not heal. is there anything to hard for God? No. he can correct what is incorrect in our bodies. please be encouraged. hang in there. Jesus hears us when we cry. he loves us and accepts us. by the way, my ordor is a dead rotting fish, at least this is what i over heard someone in my family describe this odor. that hurt so bad. you are not alone. i know that i am not alone. but i am lonely. God bless every one of you. vonnie monroe

i have that fishy oder too , comes from my vaginal area, & from these cystic bumps that i get on my rearend, & around my groin area. i have been treated with ,METRONIDAZOLE tablets & creams. but they dont make it go away. the cysts that i get ozze out a liquid, that has a exremly strong fish oder, & i have had a plastic surgeon tell me that i have HYDRONITIST SUPPRETAVIA. the patholgy report shows that as well, but i always have this fish oder , & it makes it hard for me to do things in public , i would like to know if any one else has the same symtoms… thanks

Hi my name is Tina and I’m new to this site. I think I may have TMAU. It’s tough living a life with bad body odor.

I learned about the name of this condition from a talk show on TV–one of the guests on the show was discussing it. I, too, have had similar symptoms since high school. Twenty years and three kids later, maybe I’ve found the name to what I’ve been living with all these years. I want to learn more about how to deal with this.

i have been suffering with this since i was 19. im 30 now. i thought i was crazy to have an illness that know one knew what it was. what works best for you guys? i thought i was alone in this world for the longest time. how do u deal with people that dont know what this is and if you tell them what it is they think you are crazy?

I am 38 years old and have been dealing with this problem with TMAU since puberty. I think the smell is more of a stinky garbage smell over fish. I bathe 3 times a day ( Summer, spring, winter, fall) even though people react to me like I don’t bath. I even use household cleaning( ajax, chlorox, etc.) products, herbal products , master cleansing, seen a Gyn, gastroenterologist , and also prayed about it to try to resolve this problem. But nothing work. This has caused me to become anit-social towards family and friends. I recently quit my job because the treatment that I received from my co-workers were unbearable ( such as being offered soap and water, pinesol, etc). Leaving me feeling depressed and even thought of commiting suicide once . Please Help me !!!

I have been dealing with undiagnosed odor for about a year now, and would like to talk to others to learn about TMA.

Interested in treatment and support.

Hi, I’m sixteen, I’m a senior in High School, and I’m interested in hearing learning more about Trimethylaminuria because of reent personal events that have led me to be very self-concious. I’m etremely determined to get rid of this odor, for myself, and for my boyfriends. I’d like to meet other people who know about this condition and how to keep the smell away while staying healthy down there. Thanks!

hi, my name is brenda and i really believe i have this condition. I am to the point of wanting to totally isolate myself from all others due to body odor. It is not imagined cause i hear coworkers all the time, asking what’s that smell? And it usually ends up with my name at the end of the sentence. I have gone thru multiple trials of creams, deodorants, change in diet, eliminating certain dietary products, making sure all hair is eliminated in certain places, you name it, the problem keeps returning. I hate that others are experiencing this, but there is no one to really talk to about this without shame, gossip or crying who is not going thru this. Just need some guidance. I have personal interest unfortunately in this condition.

I think i too might be afflicted with this horrible disease, although i’ve yet to be diagnosed.

I am waiting on test results and want to be as prepared as possible to fight this battle, without dehumanizing myself.

Hi, I’m Aggie7, and I live in London, UK. I’ve just read a feature about a woman in the US who has this condition and she went through the same experience as me - I’ve had this condition for over 30 years. I always knew something wasn’t right and that it was connected to my digestion, but I couldn’t work it out.

I have this condition and like to be informed on every aspect of the disorder.

I am very interesting in bo condition because my job requires some dealing with peoples. Where canI find help in Alabama. With anybody near by.

Hi
im here for my niece shes only 9 months. I want to learn more about this

Would like to share some stories. Didnt think anyone else in the whole world had this condition but me. Life has been tough,but Im glad we have each other now. Good luck to everyone.