Does anyone out there have a non-supportive spouse or significant other? If so, how do you deal? My husband tells me almost daily that the condition is in my head however everyday at work, I receive some of the most horrific treatment imaginable from my co-workers so I’m 100% certain that there is a problem.
That must be terribly lonely for you. That is the main problem of this disorder in a nutshell - I feel for you. My family can’t believe how severely I am limiting my diet and they worry about me - I’ve lost a lot of weight - I struggle with myself because I know there is a psychiatric condition specifically about hallucinating smells and imagining one’s self smells bad. At this point, I would consider it preferable to have a mental disorder! It’s complicated, this whole smell/chemistry thing.
My husband and kids, mother and the two friends I’ve told all say they don’t smell anything, and sometimes they think I’m misinterpreting my students’ reactions (kids don’t hide it when they smell something bad) but I don’t know what I would do if they put me down for having a problem, even if it’s not identified. Do you have the $300. it costs to get tested and thus validated?
HI,
I do have the $300 to get tested. I submitted an email to Dr. Preti back in September of 2006 and I am patiently waiting for a response so I can get tested.
Thanks for responding. I feel very alone most of the time…it is so nice to have someone to listen to me.
Thank you, we have received your message.
Quote: “Quitters NEVER win. Winners NEVER quit!”
“There is no such thing as a FREE ride”(Rosa Parks)
I’ve been there, too. I am there. Isn’t it the oddest thing that the people in your family can’t smell you and therefore think you’re crazy? My goodness. That has been one of the most frustrating aspects of this whole thing. It also makes me afraid to go out and ask the people who were capable of answering the question.
I also submitted an e-mail request to Dr. Preti, about 2.5 weeks ago. Do you mean that you’ve been waiting since September to just get an acknowledgement of your e-mail? I mean, I haven’t got one either, but I thought he was supposed to respond in about 2 weeks. Does the waiting mentioned for the appointment include the waiting time to receive an e-mail response?
Sarie
I read that Dr. Preti should respond within 2 weeks however, I’ve never received a response. Perhaps, you will get a response. Please let me know if you do and I will resubmit my email.
I think this disorder is mind boggling. My husband screams that there is no smell yet people at work spray me with lysol and hurl pretty offensive insults at me daily…perhaps he just doesn’t want to cause me any further distress or the idea of me quitting my job and leaving him the sole provider is scary to him so he keeps telling me there is no smell. Anyway, I’m frustrated.
Hi,
Were are you located? I’m located on West Coast. I would like to start a group or just get together with someone on a individual basis. Reply if you are tired of being alone or if you just want someone to talk .
Thank you
Valerie
Having two boys with special needs has taken its toll on my personal life. Their birth mother has difficulty in handling the daily care due to her own mental and physical health and their step mother started blaming us on her poor relationship with her own kids. The boys were the reason she could not have any friends or family over. She also was accusing the boys of tearing up her house despite the fact that the dogs did more damage to “her” (not ours) house than they did. The boys seem to be an interferrence in her life. I ended up moving us out into our own apartment and I’m trying to create a world where we are not intruders on anyone elses life.
I’m sorry to say but this life takes it’s toll on almost everyone of us that live day in and day out with health issues of our own or our kids.
Hi,
I’m located in Maryland on the East Coast. I would also like to meet with someone.
sorry forgot to mention… that i’m also located on the east coast in DE…
Hi everyone this is my first attempt to reach out 
…i think i may suffer from this disease as well …, i do have a QQ… does anyone notice that the hotter or the warmer u get the smell intensifies ??..i hate going out in the summer … because i seem to give off a terrible odor …and even when i shower i may smell like soap but when i go out …people seem to rub there noses … or cover the noses when i’m around… …and i too here comment like something smells funky…and i may’ve just gotten out the shower like 20 min ago… …this is soo sad …
Hi amwe6, my name is Tina and I’m 29 years old. I think I have tmau. It started in Junior High. I was so stressed out that I tried killing myself many times. Fortunately it didn’t work. I know how you feel when your spouse doesn’t support you. He thinks I’m crazy. I wanted him to understand me better so I showed him a video of the Prime Time Show on NBC. He just laugh and told me other people have more serious problems than that. He doesn’t know how low I feel because of this condition. I am struggling with finding a job and I want to be independant. I love my husband and all but sometimes I just want to leave him. He has add more stress to my life and I am adding stress to his. I want him to have someone better than me, a more confident person who will make him happy. I am only staying with him because of our three kids. I don’t want to ruin their lives because of me.
hi guys,
I too experience the same things in the public so I guess i am not overly neurotic, and my family also will say they don’t smell anything, but when I’m at home it’s cool or cold in the house(i make sure of that) so I won’t sweat, and I am showered up or have some type of cologne on or air freshner. I am so frustrated and too ashame to talk about the situation even with those whom I feel would not gossip about it, it consumes your thinking, I’m always wondering if I am the source of the odor when there is one present. this is too exhausting, mind blowing. One big hug to everyone. didn’t realize there were soo many suffering from this terrible condition. I use antibacterial soaps/ alternating with hibiclens soap-which is antimicrobial. pcp did prescribe antifungal cream for under my arms, I use expensive perfumed lotions that will only mask the odor because it is coming back no matter what. I haven’t really found a doctor whom takes time out to really consider this condition and it’s almost requiring need for psychiatric help, just to deal with emotional isolation due to rejection from others who all assume it’s due to poor hygiene. I hope that we who understand can keep the compassion going for all who needs a hug. I know I do. thanks everyone for listening, didn’t know you were out there. bye friends
I had an odor problem for more than 30 years before finding out what it was. I heard some of the cruelest comments you can imagine from kids at school, co-workers, and complete strangers. Even with all of that, my family (including my husband) and friends have never once admitted that they could smell anything. I thought I was losing my mind. I really believe that they could smell me as much as everyone else, but they didn’t want to hurt my feelings so they just continued to deny that there was anything wrong with me. I think they all were doing what they thought was best, but they made it so much worse. It would have been better if I could have asked them to tell me when I was having a bad odor day so I could be prepared for the reactions I would get. Instead, I felt like I was completely alone even though I have a large family. Even after I knew what it was and told them about the condition, they still say that they never noticed anything! At least when I was with my family they always treated me like I was normal!
Thank you for contacting me and sharing your story. I feel that same way too about my family. I’ve asked many time and get the same answer (No smell) but when I go out to work or just around town people ask like I smell like a outhouse. Many time I felt as if I was loosing my mind and other time I went into depression wish it would just go away.
I’m hoping that my new doctor will at least run some test and allow me to be tested for TMAU. Hang in there and thanks for sharing
PB
i have lucked out and found the most wonderful person a few years ago but have made the choice to not share it with her. i have been in a previous relationship where the other person just acted like they have not smelled anything. it is truly mind boggling. yet i go to work the next day and face the rudeness and insults. i recently began a new job and the first day i got the comments. it is really depressing. anyone here is invited to read my journal and message me and let me know what they think. also, i too have realized that the smell intensifies over the warmer months. it really sucks going to the lake or a ballgame or the like. i reside in the oklahome are if anyone would like to discuss in person or phone.
A
I know the feeling all too well. I got the comment about a week after starting at my present job. It makes you want to hide. I have a 8 and 5 year old sons and they want to go place and I want to take them.
It is difficult every time you go someone, someone makes a comment about the way you smell. Earlier this year, my husband and I took a trip to cancun mexico and a little girl kept saying to her mom “it stinks, it stinks” the honesty of little child…I have been so depression that I didn’t want to live anymore.
At this point I’m waiting to be tested and If the results are positive I’m going out on disability. I’ve had enough of joke. I will work from home and at least I can get rid of the stress of co-workers.
Penny
Hi everyone, I just found this website. I am researching this problem. Can you post the thing that have helped you. I imagine that it would help everyone and they could submit if it helped them or not.
Tackeling the smelly problem is like any other problem. First you have to understand you have a problem. Amazing how many years that takes.
Then you hide and are hurt. But the real time comes when you take action to fix it.
Some people do not smell choline for some reason. Others smell it more greatly. You family becomes used to the smell gradually and does not notice. Kind of like living on a busy street and not noticing the sound of traffic until you journey to the countryside. Probably a good thing, otherwise many would have no support whatever.
I think the only way to tackle the people at work and in society is to let them know you have a disease, that you are missing an important enzyme in your bodies digestion. Explain that it is hard to live with it as with any disease. You can even ask them if they have an disease or know someone that does. You can even give them the website raredisease.org
Education helps. They may never speak much to you again but they will not be unpleasant either. If they are you could ask them to donate to one of the organizations fighting TMAU. Most people will find it within themselfs to be ashamed. They might even become your friend to make up for misunderstanding you.
I believe it does get worse in the hot weather of summer and in times of stress. Distance seems to help. Even a few feet. And having social events outside.
The way you do let it defeat you is by staying inside and withdrawing from life. Think about it. How many paralyzed people do you see in a day? Blind?
Deaf? Burned? Get the picture lots of peole give up
I agree with tree, very much so. My family denies I smell. Well I am usually not worried or excessively stressed around them. Whenever I walk into a building with other people other than those I live with, I get nervous, stressed and it’s activated pretty much as a skunk’s defense would. I read for excessive sweaters it’s the over activity of the aprocrine glands which give off an offensive odor found especially underarms. I did almost give up. that is not God’s way of thinking. But much like other diseases Cancer, Diabetes, HTN, MS, this is very real and devastating. Though not terminal it makes you feel like you want to leave this earth just to not be here. That is an unfortunate statement but true but again, not God’s way of thinking and he loves us so much==this condition is one that will be done away with. Thanks so much for sharing don’t want others to go through this but this site gives us a forum to vent. There really is no other. love you all.
Tina, I hear you and understand you but believe that most of our families in which we live with say they don’t smell us. My husband and daughters kinda make fun of my statements also alluding to I got a psychological problem. Sounds like pretty much everyone on the site experiences some of the same issues which can be ever so humiliating. I watched the Prime time show some years ago and even showed an article to a what I thought was a trusted coworker. I’m in the healthcare profession so it’s double time embarrassing for me as they would say she needs to take a bath. Know that others are praying for you and I need all support and prayers for those that believe prayer works. Building endurance and strength to deal with the problem is what we receive. Sometimes after doing all you try to do the awful smell exists especially during stressful times. That’s whenever I am around a group of people. But spouses sometimes can’t smell themselves or they just may be used to the smell if it manifests itself in the air not thinking it comes from another person. Though you are dealing with this personally he may not truly have that sense of smell. Yes there are terminal diseases and my heart goes out to those dealing with their devastating illnesses, but this is such a social matter and people that don’t deal with it they really don’t understand. They just think if only we just take a shower. I wish that was the solution. Well hang in there it’s not easy to deal with but you too are not alone. Thinking of you and praying we all get through this awful day to day situation.