Hi, I’m a 43 year old woman in Melbourne, Australia. I’ve had what I think to be TMAU symptoms of unusual odours from body and mouth since my late 20’s. They have since become worse, particularly body odour since having my son. I’m a single mother and this is affecting my whole life in every way. Is there anyone in Melbourne, Australia that is suffering with this horrible genetic nonsense and where did you get the TMAU testing? Any info would be great.
Hey RJJ, good to know there are others out there and willing to connect in Melbourne.
Since you have identified 3 areas of this condition in your text Me thinks you do have TMAU. But, I am not a medical practitioner only a fellow sufferer.
I am an older aged woman of 60 and have TMAU2 since identifying obvious symptoms. I have yet to find a metabolic specialist in this state and find fellow suffers purely for social interaction. My GP thinks I am paranoid about body odor issues!!! NOT.
Sad to say it’s not nonsense. We have a “rare” metabolic disorder, (affecting women more than men) which primarily means there is only a small proportion of the population in this country that has Trimethylmanuria (TMAU) and doesn’t even rate a look-in in the eyes of our medical practitioners. However, a little bit of hope. Our researchers (incl. Aust/NZ) are out there and research papers on the net to be found on this disorder, but a cure…hmmmm not yet.
Management is another thing and there are numerous suggestions on the net made by many around the world. Most of all…your mental health (each day is different). You will need to dramatically address your diet (which is challenging). Thereafter the various other areas of:avoiding stress, paranoia, social stigma, clothing, heat, sweat etc.
From my perspective it is socially debilitating and I tend to withdraw from social engagements (of any kind) and keep daily chores to a minimum. I am more active online…at least a way to connect.
I don’t mean to sound depressing but its real. I am real…I have TMAU.
PS keep tight with close friends/family and share with them what you believe have.
Happy to touch base.
Hey rjj ,
I’m 22 years old guy and I recently realised that I have this condition and i don’t know how to deal with it or get a proper check up and please let me know where I can get help, thanks
I am also a TMAU sufferer 4 months in Melbourne. I moved from NSW. I haven’t had the chance to diagnose myself but I heard Royal hospital can diagnose. I am not sure. I would like to go there myself and see what happens.
Hang in there, I had difficulties at work with other colleagues telling me indirectly I stink, backing up and maintaining distance, coughing, sneezing, rubbing noses, holding their noses around me. They must be thinking this dude does not shower or does not use the toilet properly. so yeah, I suffered a lot but I have to wake up every morning hold my head high and hope one day there will be a cure for all of us.
This disease has affected me in every way, I have no friends, I can’t go social gatherings anymore. I sometimes can’t even go to woolies because I am afraid of stranger’s comments.
Thanks for all of your replies everyone. I know I do have a lot of food allergies as I had test results come back. Egg is a major one along with yeast, which also leads to mould allergies. So food restriction is very difficult but I’ve made some changes. I’m still waiting for an appointment from the Royal Melbourne Hospital, it’s taking months to even get a response from my initial referral, so need to chase them up again, so at this stage not sure if it’s TMAU. I have noticed the less I worry about, the less issues I have…so stress is a major factor. I still live normally and go out socially as I refuse to let it control my life but nonetheless I do get frustrated and down on some days. Happy to connect and have been thinking about starting a support group for people who are in the same boat. Let me know if you are interested. Cheers Bec
Go to your local GP and ask for a referral to the Royal Melbourne Hospital for TMAU testing for Professor Gerard De Jong (not sure of spelling). It’s the metabolic department. It takes ages for an appointment but keep chasing them. Happy to start a support group if you’re interested? Let me know. Cheers Bec
Hi Jason, it’s crap that we are dealing with this. I’m thinking of starting a support group if you’re interested? Let me know.
Hi everyone in this forum,
I’m 52 yrs old woman I also think I have this condition as I experience those symptoms. I have friends but cannot talk to them about this I did once to my close friend but maybe trying to please me she said she don’t smell me. I cant talk longer to anyone because of my smell.
Its so frustrating that even our GP have no idea what is TMAU she just refer me to another GP that specialized about my condition she really thought I’m just paranoid because one of the GP that she refers to me is a psychiatrist.
I never knew about this TMAU before I tried to find ways that can help me know what is going on with me so I spent a lot for many test, medicines, diet, soap etc. You said you are just waiting for your appointment can you pls tell me what I need to do cause once and for all I want to be diagnosed for my peace of mind.
I hope someone here know exactly what we can eat I always read about what to avoid. I want to know what I can only eat. I also live in Melbourne its nice to have you in this forum. Hope you understand my English, have a good day.
My name is Laura and I’m a journalist working for an Aussie magazine. I was hoping to do a story on TMAU to raise awareness and reduce the stigma around this condition.
If you are open to having a chat with me, i’d love to hear from you!
I live in Melbourne also I’m going to see a specialist in St Albans to see if I can get tested!
TMAU has ruined my life I don’t have one an it’s about to ruin my career as I might loose that as well I can’t work from home forever! Even if it’s what I want an need!
Do u know of anyone that has had any luck in getting cured?
It would be good to be in contact with people who have it as I feel so isolated I can’t explain it but it’s terrible!
Hi MTT, you are not alone, though it may feel like it sometimes. Yes it is an awful condition and carries a lot of social stigma. But be assured that we all stand beside you. When you are having a bad day emotionally we are having a bad day right with you. Thank God for this forum. Others who don’t deal with this, really don’t understand. I am in TN in America and most of our dermatologists in this area only treat symptoms. I’ll just says understand humiliation, and frustration but please keep in mind each time it happens, this too shall pass. look up foods high in choline to avoid. Yes we need the nutrient choline but we have to limit certain types to control odors. Just to mention, don’t eat egg yolks, organ meats- and I loved cooked liver and onions, Limit eating fish roe, salmon, tuna, cod all have a high content of choline, also avocados. just to name a few. again Choline is a very important nutrient so you have to balance out the intake. until you are able to find a doctor to help the situation use antibacterial soaps and keep alcohol wipes to clean up if you sweat a lot. Sweating is the problem which we have to do but some do more than others and the bacteria especially in those who don’t metabolize or process choline properly in their body presents a horrible odor. Just try to find out what works best for you, cause you can’t stop living, From the heart you are loved just maybe misunderstood since you have a condition that most the world does not understand. talk anytime. Love always. Don’t have to see ya or actually know you to love ya. Life can be difficult but is doable. Lets keep sharing and encouraging