Living and Working with Trimethylaminuria (TMAU)

Living and Working with Trimethylaminuria (TMAU)

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I would take fifteen showers a day
and then soak in the tub for another few hours because I thought it
was bathing. I did not know what it was. I want to be clear for the viewers
today… I’m not a medical doctor, when people see the PhD they assume the scientific field, but I am not.
So I want to be very clear. So my interpretation might be a little different than perhaps some of the scientists’.
But basically what it is The FM03 gene that has a mutation on it. And that mutation usually prohibits the
liver from breaking down by-products of proteins therefore the trimethylane Just doesn’t pass normally as it would in someone without the FM03 gene mutation. And that usually builds up in the body
And it can come out in the patient’s breath, sweat, I’ve heard in their scalp Tear ducts in their eyes Any opening Often times this disorder causes paranoia as
you can imagine. When you see someone do that, it might not even be the TMAU patient
But because they’ve been ridiculed And heard so many condescending comments
that they immediately think that its them. And sometimes they will get in to stress mode
And when we have stress, at least for me, I start to sweat more And so forth That makes it even worse So it’s a never-ending circle
For some people, the diet, the low choline diet, using low PH soaps, seems to help. Unfortunately for others Nothing really seems to help Many physicians will assume, due to their training, That it’s a psychological problem For example it took me 3 years going from doctor to doctor. Before one doctor finally said
OK, I’m going to give you this test. It’s about 650 dollars I know for perhaps You or I, or someone You’re saying, “What’s the big deal Cheryl?” Well, some of the people with TMAU are either unemployed or underemployed. And social security Doesn’t recognize TMAU as a Disability. So, 650 cash for someone who is not working, or barely paying their mortgage or rent can be phenomenonal. Following the phone interviews they always tell me Cheryl wow You are our perfect candidate And then, You get flown down And you can tell that The faces, the enthusiasm Just kind of drain out of them. If you do get a job, it’s a battle to keep it People have told me Cheryl, I walk into work everyday, and there is soap on my desk, detergent That hasn’t happened to me, But I can only imagine how they must feel
walking in every morning to that. There is someone who just called me a couple months ago From Washington DC and wanted help One of the things I told the employer was why not move Jane’s office down to the end Where there is not as many people And there was 2 windows there and from what they’re telling me I
got an email from her boss and her and it’s working
great For those of you watching today you are not alone It may seem that way But for those of you watching, my phone number is on the internet And I get calls at 3 in the morning So you’re never alone, call me, call the other support groups, email
If you’re in town, you can come by and visit I’ve been invited to people’s homes before, there are support groups all over you can skype now They have meet-ups Where people who have this disorder or people who are interested in it Can go and learn It’s usually a weekend retreat So, things that I didn’t have, now they do have So you may feel alone, but you are never alone

63 thoughts on “Living and Working with Trimethylaminuria (TMAU)”

  1. Thank you for coming out and speaking out about this condition it really helps to know that others are fighting this and overcoming with positive thinking. I also have this disease and it is difficult dealing with it. I pray the masses will learn about this and have more compassion towards those of us who have this condition.

  2. I also believe I have this disorder for about 6 years now and it has devestaded my life socially and mentally. I wish their was a cure for this because I will be heading into college and I don't want to ruin the experience just like it did in high school.

  3. Hey Joshua. Hope you can join us at the TMAU community on RareConnect. The link is in the video description.

  4. My friend had a fecal and rotten egg order from a worm parasite infestation. The long worms would travel from the anus and colon up to his esophagus, and mouth. This is how the fecal and egg odor came about. He had a lot of gas, constipation, and a tickling in his back throat that made him clear his throat often. He eradicated the worms and odor by drinking diluted food grade H202. One drop of H202 per/oz of distilled water. He drank this every day for weeks and they all passed out of his body.

  5. can you help me. i'm from philippine i have a T.m.a. it's hard for me that they accusing me that im not take a bath i feel very sorry for my self i hope theres a cure.

  6. thank you for this video, I have a free ebook currently on Amazon about TMAU called The Secret Life of a TMAU Sufferer,  http://myBook.to/Trimethylaminuria please read and review if poss!

  7. Conference Call: U.S. Equal Employment Opportunity Commission
    Topic Discussion: Disability Discrimination & Hostile Work Environment
    Eddie Mary Daniel Abdulhaqq
    Program Analyst/Outreach, Education & Training 

    Date/Time: March 13, 2014 at 10:00 AM CST

    Have You Been Discriminated Against, Denied Employment, or Experienced a Hostile Work Environment, Because of Your Symptoms with TMAU.
    Join this conference call to hear, discuss, and have your questions answered by an EEOC officer.

    Contact; Lisa Mardis (Birmingham, Alabama) Facebook
    Upcoming Event Conference call with Social Security Administration

  8. We are alone.  No amount up tempo piano keys will make light our affliction.  Our reproach will not be pealed back.  We are a gazingstalk and a byword.  We are the spoiler of comforts.  Friendships are as extensive as the earshot and field of vision, beyond which gate all are yelping and whooping hyenas.  God has given us to learn after the leopard.  Study him well or watch everything melt away.  A stipend is only good for funeral costs.  Be fluent in leopard, or rest with your fathers before you.

    The comforts in Christ are not to be enumerated.   The world to come has more promise.  One need only tarry.

  9. I have this disorder and I thank you for this video. Fortunately for me, i have been able to cope rather well, but I know I am doing a lot of harm to my liver, which I believe will most likely lead to my death.

  10. to the video publisher. you clearly have expertise in this disorder so could you just treat it with trimethylglycine (betaine)? I don't have this disorder but I do notice that when I take betaine at night, I don't wake up with a nasty all familiar taste/morning breath in my mouth. The morning breath I would conclude is that "fish odor" known with this condition. So couldn't people just take betaine with food and before they sleep?

  11. Im sweating in my groin my armpit my egg all over my body even in my butt and smells so baddd.. Is it an tmau? Or a hyperhidrosis?

  12. Excellent Video Cheryl….  I'm going to give you a call today.  I'm "Celebrity Chef Kat'" and I too have TMAU I've been working on a diet and "TMAU Spice/Seasons" and it's really been working well for me.  I would love to share my story and help others.  I look forward to speaking with you soon.  Kat' [email protected] or [email protected]

  13. Hi I have an odor problem. When menstruating start I feel an intense burning smell and where I go all stinks (even whole rooms). After menstruation are gone, there are always people who are coughing in my presence, I often feel smells like garbage, and sometimes fecal odour. This problem I have from child, now I have 28 years. Some year ago a person said "it stinks of fish".
    I would like to get tested for TMAU to see if this may be the cause, but I live in Italy and there are no laboratories for these analyzes. I read that I could do it in the UK or USA but it costs too much. I'm afraid to go out and among the people. I do not know what to do, I don't leave the house, depressed, ashamed of myself.
    Thank you in advance,
    sorry for my English

  14. hi i'm Reynan from philippines, and i have the same situation, i diagnosed TMAU last 2012, and i really hate TMAU, that is the reason why i stopped studying, there are so many people judging me about my smell, some of them laughing and bullying me, that is why sometimes i can't stop my self to hurt the people who bullying me, because i'm thinking that i have to hurt them to stop them bullying me,,, but now i realized that violence is not the answer to stop them, all i did is ignoring them and just let them judging, laughing, and bullying me, because i realized that i can still do all what i want to do, and i can still enjoy my life with this life breaker 'TMAU' , and also i realized that i can still achieve my goals by helping my self to get up and still frighting for my future and make my dream come true, and i learned how to accept that this is now a part of my life, and i think GOD gave me this because i think GOD want me to be a stronger person,

    i know that no amount of positive thinking can solve TMAU problem, but by helping ourselves and acceptance is the only way to survive TMAU,
    i'm sorry about my english, i'm not good ni english language,,

  15. I'm not sure if I have TMAU, but here's my situation. I'm 21 years old and during my sophomore year of college, my mother began telling me that I had a bad odor. She described it as a very strong musty smell and she says that it lingers when I leave a room and leaves a trail wherever I go. The problem is, I can't smell it and no one else appears to either. I've asked close friends and a trusted professor if they've ever noticed anything and they have always told me no. Even my previous roommate and my father have denied ever smelling anything bad. I'm not the healthiest person when it comes to food choices, but I bathe and brush my teeth daily and I use deodorant body powder as well as under arm deodorant.

    Since this apparent odor showed up, I've become increasingly paranoid about what people around me are thinking and wondering if people are talking about me behind my back. My mother's "loving" advice is border lining daily harassment and she refuses to believe me when I say that I showered. Her insults are starting to really hurt and I'm almost at the end of my rope.

    So my questions are: How is TMAU diagnosed? How much does it cost to get diagnosed? What are some ways to control the odor when I can't smell it?

  16. She said there was a website with numbers and a support group? I think there should be a website where we can chat everyday and give our numbers out and talk to each other about what we go through everyday! I'm having a really hard time and it would help to talk to someone

  17. What's the difference if you are diagnosed. Why bother. I wish people would quit saying it was so rare…I really wonder. There are plenty of other sufferers on youtube and I have tried to go to doctors and half of them don't know what you are talking about. One dermatologist sneered and told me to use stronger deodorant—ignorant much? I have secondary TMAU (wasn't born with it) and it's really hard to live with.

  18. omdg i hope I don't have this because I been having a bad smell on me even after I take a bath 😞 and Ik because I smell it and other ppl smell it UGH I hate this 😢😢😧

  19. Tmau should be known by the world
    So that people wouldn't judge others easily as having poor hygiene
    But to respect them that they are suffering from an illness
    I do have hyperhidrosis and I can mask my smell, when I get stressed it worsen but at least I have a backup plan before it happens
    But I feel sorry for this people because there is no cure for tmau
    Unless go through some medications and diet

  20. It my life story, I am watching my life. This all started when I was 15 years old. I thought that I was crazy, my family could not smell me. I would go around asking my friends DO YOU SMELL ME… I tried committing suicide numerous times. I was picked for modelling, every thing that I tried to do failed. My family kept on saying to me, you are so intelligent do this do that, they just didn’t understand. I hate being around people,I pray to die. I am 58. How much longer do I have to SUFFER? I am neurotic, I bath and was so much my dermatologist told me that I am ruining my skin. I read your story and for the first time I feel hopefully. I Thank my GOD and I thank YOU.

  21. Help me. I smell urine! Maybe i'm not sweat but still smell. I have not smell like fishy, egg, or crop i have just bad urine odor. Once i think it was came with sweat but it did not. The strongly smell is coming from chest when i wear wool i can smell it. I have feet armtips sweating but, sweat does not smell like urine. Can anyone tell me what is happening around my head ? Sorry for my english

  22. I was a premature baby. I spent my first 18 months in the hospital. And they would tell my mother that I was allergic to diapers is why I smelled like this so, she used cloth. It didn't help. Dr.'s told me I was allergic to soap, laundry detergent, dryer sheets, and PANTIES!!! All the kids growing up would call me stinky names. I think high school was the worse. I really loved school and learning but hated the students for teasing me . So, I would cut classes until I finally just stopped going all together. Later I finished H.S from home/online. College was bad because everywhere I sat, there were empty chairs all around me because no one wanted to sit with me which made projects and group assignments hard and hurtful. No one ever wanted to work with me and I was great! :'-( As an adult, people still don't sit by me in meetings every week! Or if they do they fan, constantly sniff, wipe their noses, or turn their backs to me. If I'm in line there's always at lease a 5-6 foot gap in between me and the surrounding people. At work, I've been told it's unprofessional for me to smell like this. I've had people get up and walk out of my finance office. Or like today, spray perfume when I get up to make copies of something. HELLOOO!!!! If I had a choice, I wouldn't smell like this! This is so depressing. I've been dealing with this for 50 years. Thanks for sharing and good luck to you all.

  23. Lume Deodorant for Underarms & Private was created using TMAU science and it's clinically proven odor control. It is a promising solution for those suffering with this condition. www.lumedeo.com It is doctor developed. Reach out to us at [email protected] I think we can help you.

  24. Hey everybody! I just turned 25 years old a couple of weeks ago, but I’ve been dealing with this problem my whole life. I went to so many doctors appointments, tried so many medications, and nothing was working. I thought I had oral thrush, GERD, worms etc, because my breath always smelled bad. No matter how many times I brush and floss my teeth nothing would change. I used to play basketball and do music all the time. Now I barely do anything because people always just talk about my breath, when i cant do anything about it. So overall it’s been hard with my self confidence and even working because I know people think i just don’t brush my teeth or have bad oral hygiene, but that’s not that case. I have TMAU and so do both of my parents. I chose to be the lab rat just so I can figure out why we all have this problem. Well now I know, and it’s causing me to have social anxiety and depression. I almost just don’t want to be on earth anymore.

  25. Hey guys, try an anti-oxidant green tea, drink it several times a day and take probiotic pills 2 to 3 times a day. I had this problem relating to TMAU but I've never got a diagnosis. Why do I need one? It's enough for me to watch people act like I stink after I just took a shower, brushed my teeth, washed my hair and put on clean clothes. That's enough of a diagnosis right? So I've been using the tea which I found in a whole foods store and the probiotics I got from Walmart. It has worked for me. The tea makes me urinate more often but my urine is very clear now. I believe the tea is cleaning my insides and the pills are cleaning my liver. I also recently ordered oregano leaves so that I can make tea with it. Oregano is an anti-oxidant. I have not changed my diet a whole lot, I still eat I want but I try to eat a lot more fresh fruit and green veggies and I stopped the greasy breakfast meals.

  26. i suffer from the same and its just so hard when people laugh at you,drag you down and treat you like a piece of shit

  27. i have been taking probiotics,zinc,copper chlorophyll,activated charcoal, amoxicillin, tried baking soda but i just cant swallow yeah some people they are haunted no cure please god help us i beg you

  28. we dont want to get scolded because of something that is not our fault and when they are so rude we dont have the courage to stand up to it its like being an under dog which sucks

  29. why cant they understand that we are also humans and we have feelings we feel sad and you people just laugh at us it is not fair

  30. i have a bath in the morning with shampoo and conditioner also a shower at night with soap and water use a deodorant for my under arms you see we are not dirty oh wash clothes regularly but

  31. people call me a dog, toilet,garbage bin and because of that act like a lunatic or a mad person then they bully you calling you are stupid because deep down inside we are suffering which no one can understand

  32. people feel sorry for any other disease but this they have no sympathy at all they think its in our mind and we are crazy oh dear lord i pray for all of you we dont deserve such

  33. Hello there. Today was my first day working. I can feel that my boss talk about my odour. Maybe. U know what..i feel so sad. Why do i have this desease. I m feel so down. Why me?

  34. I wish my family can feel what i going trough. They never understand my situation. Yes, i want to work. I want earn money. But, they didnt feel me. I was bullied. I quit my study. I lost my friends. People are laughing at me. People are teasing me. How can i live ? Where should i go? I hate my self. I hate everybody. Nobody understand me

  35. Hi my dear friends.
    I think i had this problem for years
    Since i was 12 years old and throughout my school years i had this feeling that everyone was avoiding me and holding their nose. It even continued in university years and it was even worse because in my country schools are separated but universities are not.

    I graduated in mechanical engineering in bachelor degree and got a master degree in energy engineering though.it was real pain hearing friends comments about my body odor.

    These days I use black seed daily a teaspoon before breakfast and another one 12 hours later.
    I wish it will work for you all and be free from this pain.

    Best wishes for all of you.

  36. I don't know this disease and I don't have it, but I have a problem similar to it. Even after shower I stink some and no deodorant can completely solve the problem. The smell remains on clothes and it may remains after washing! So I use baking soda (Sodium bicarbonate) after shower and some other times, on underarms and between legs. And it works completely, I hope that can solve tmau patients problem a little. Try that.

  37. Im sorry but people are put off by bad smells. It's in our nature. If you have tmau you have to accept this. Its a burden but that doesnt mean you cant enjoy life you can always find a partner online (dating website, forum, etc). And bottom line is the hell with people like me. All you can do is inform us and maybe accomdate (face masks, essential oil diffuser, etc). Lastly you have to put yourself in our shoes if you want us to put ourselves in yours.

  38. People, be very careful of these miraculous healing claims, for instance
    Hydrogen peroxide can be extremely dangerous, even food grade HP if one is not very careful. So proceed with care and much caution. Consult with those who really know not those who just claim to know. And I am not one of the knowers in this case.

  39. I have read and heard that sis Cheryl Fields passed away. Does anyone have true information on that claim?

  40. I am a 12 year old with this syndrome and it is tough. I always am getting bullied and people will tease me and I hope anyone with this syndrome doesn’t take their life away because I have learned that people with this takes their lives because of bulling

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