My Success Story

Hello Everyone, this is my story. It will tell you about me, and why I joined the Trimethylaminuria forum. I know it’s really long, but maybe it might help someone.

My Story

I am a 27 year old woman that has a fish odour/smell of urine in the vulvar area (sweat glands) and a fish odour in my urine. It caused me a lot of problems all throughout high school. I was picked on by other students, a few made comments about how I smelt to my face.

I remember one time when I on a school excursion with my music class, and we were going to Melbourne to record a school CD. I was really nervous about the whole thing before we even got there. We had finished, and we were all getting on the school bus. I sat down, then one of the other students walked towards me and said “someone smells like they’ve wet themselves” whilst looking at me, and then sat at the back of the bus. The teacher didn’t say a word, like she was giving the student permission to tell me what everyone else was thinking. I was so embarrassed and humiliated, I just wanted to go home and cry.

There was another time when I was at school, and one of the guys said to me that I smelt like fish, and he constantly kept pointing it out whenever we would see each other. Another guy would wave his hand in front of his nose, call me names and say things like “Gee, something smells around here!” whilst looking at me.

There were many other instances where I could smell my fish odour when I was around other people. I would be out in public where I wasn’t able to have a shower. I would get really anxious, and all I wanted to do was go home again.

After high school, I had two retail jobs. One was at a discount department store, and I worked there for two years. I still had the fish odour, people noticed it, but they weren’t nasty to me. The second retail job was working in the Poultry Department at a local supermarket. It was always freezing cold, so therefore I didn’t sweat at all, and because of that, no-one could smell my fish odour. I worked there for two years whilst doing a short course to become a Personal Care Attendant. When I finished it, I worked for a few nursing agencies.

My fish odour continued to cause me problems when I started working and doing permanent shifts at the local nursing home. Other nurses didn’t want to work with, or be in the same room with me, especially in summer when it was really hot, and I was sweating a lot. I was also sweating a lot because the heating was always on really high, and because I was really anxious, even before I got there.

When we had our nursing handover and we had to work out who we would be working with, people would try to avoid having to work with me. When we were attending to a patient, the staff member I was working with would leave the room/bathroom that I was in really quickly, and get someone else to come in to help me finish attending to the patient. I could tell from their body language, that it was because I smelt bad.

The odour had always been worse when I was menstruating. I would change my tampons/pads every hour and still smell bad. I began to avoid going to work, or calling in sick whenever I had my period, because I would end up in the toilet all the time. I know they must have thought that I didn’t shower. I didn’t want to go to work meetings or education sessions because I was conscious of the odour. I was required to go as part of my job as a Personal Care Attendant, but I would try and get out of them, or not turn up.

I would avoid being close to people, just in case I offended them with my smell. It was really affecting my job performance, and impacting on the care I gave my patients. Social anxiety was a big problem for me, I would sweat even more because I was so anxious, even before I got there, and my social skills were becoming worse because I barely spent any time with people other than my family.

I didn’t want to deal with comments from other staff members (such as “someone smells like fish”). They would mutter comments under their breath, or I would hear comments about my odour down the corridor when people didn’t think that I could hear them. I would just pretend that I didn’t hear them. My self-esteem was so low that I couldn’t stand up for myself. Even if I did, what would I tell them?

I didn’t have a diagnosis for my body odour, so I couldn’t tell them it was a medical condition. I had been tested for everything else that it could have been. I believe at that time that talking about it would have made my situation worse than it was.

I got to the point where I was in a lot of financial trouble. I eventually had to declare bankruptcy because I had used credit cards to pay for bills, rent, food, bought things that I wanted online, and I couldn’t make the repayments. After I declared bankruptcy, I had to cut back on food so that I could pay my rent and bills and avoid having the utilities cut off, as well as feed my cats. I ended up only working on the weekends, and even then my anxiety was so bad that I would call in sick and not go in to work. I would intend to go to work, because I knew that I really needed the money. I would get in the shower, get extremely anxious, and not want to come out. When I did eventually come out, I would ring work and say that I was sick. I would have rather put up with them being angry with me for calling in sick again, feel the anxiety my financial situation was causing me, and go without food, than deal with the staff, and the comments about my fish odour.

I mostly stayed at home, where I didn’t have to worry about my odour and what other people thought of me. I spent most of my time on the internet, since it was my only contact with other people, and only went out to see my family or get groceries if I really had to. I started looking for jobs where I could work from home, or not have to be around other people. I was so lonely, angry and depressed. I really began to hate myself, and everyone else. This had now gone on for over 10 years.

One day I thought to myself “I’ve had enough of this odour problem, it’s ruining my life, and if I have to go through another summer putting up with people’s comments about my odour, I am going to kill myself.” This was a turning point for me. I made the decision to figure out for myself what was causing the fish odour, despite what the Doctors told me. They didn’t understand what I was going through, and thought that it was all in my head or that I was being paranoid because they couldn’t smell the fish odour when I saw them.

I had been to Doctors so many times over the 10 years with no solution as to what was causing the odour. I would be tested for a bacterial infection; each time the test would come back negative, or be given antibiotics or anti-fungal tablets. I had never been sexually active, up until recently, so it wasn’t Bacterial Vaginosis or Trichomoniasis (which could also cause a fish odour) or any other STD. I was referred to, and went to appointments with the Psychologist and Psychiatrist for Social Anxiety/Phobia and Depression because it was affecting my self-esteem, and impacting on my ability to work. I was given anti-depressants, and tried about three or four of them. I also tried anti-anxiety medication, so that I could at least get through work, but the side effects from the drugs were too severe, so I didn’t continue taking them.

I had been taking the contraceptive pill. I thought that maybe that could be contributing to the fish odour. At that point I was only taking them to regulate my periods. I didn’t want to continue taking them anymore, so I stopped taking it.

After a few months, the odour was still there. I had decided to go on a vegan diet, because I didn’t want to eat animal products anymore, so I eliminated all animal products from my diet.

About two years later, I went to a first aid class. I had to go because it was required, and if I didn’t do it I would lose my job. I was really anxious about how bad I would smell. I had not eaten much during that week because of stomach problems that I was having at the time.

The class finished, it had been a really hot day, and I was covered in sweat. I came home, and I realised that even though I was covered in sweat, the odour had gone. I tried to think about what I had changed in my diet. The only thing that I had done differently was that I had not eaten any soy products for week (I had eaten a lot of soy products, being on a vegan diet.)

After doing some research online, I found some information on Trimethylaminuria (TMAU), read about the low choline diet and taking supplements with chlorophyll in them, that women are more affected, and that researchers suspect that this metabolic disorder has to do with female sex hormones. The symptoms I had fitted the description of TMAU almost perfectly. Before I went on a vegan diet, I had consumed a lot of meat, eggs, fish, soy products, and was also taking oral contraceptives. No wonder I smelt so bad!

I spoke to my mother and aunt who have also had the same problem as I have with the fish odour. I told them about Trimethylaminuria, and that this metabolic disorder was what we could all possibly have.

I also wanted to cut out coca-cola from my diet. It wasn’t good for me, and I was drinking way too much of it. I was drinking a 1.25 litre bottle a day sometimes. I had stopped drinking it for a few months. I went to work one day, and I was really tired when I got there in the morning from lack of sleep. I decided to have one can, figured it wouldn’t hurt me just to have one. I drank the can, and then went back to work. By the end of my shift, I was sweating a lot, and my fish odour was really bad again. That’s what made me finally give it up. Caffeine definitely increased my sweating and exacerbated the odour.

I spoke to my mother and aunt who have also had the same problem as I have with the fish odour. I told them about Trimethylaminuria, and that this metabolic disorder was what we could all possibly have.

I saw the Tyra Banks Show. At the time I was watching it every day. On this particular day, it was about unusual medical disorders, and a woman with Trimethylaminuria was featured on the show. She was talking about her fish odour, and even getting her on the show was a source of severe anxiety for her, because the fish odour for her was so bad that it could clear an airplane. They were talking about the fish odour, which started between her legs as well, and as time went on, the fish odour emanated from her whole body. She spoke about the low choline diet, and avoiding certain foods such as animal products, soy, nuts and seeds.

I went to my current doctor, and told her about the show, described my symptoms, and told her that my mother and aunt had the same symptoms as I did. She actually listened to what I had to say, and rang the Pathologist about testing for TMAU, and I was able to get the Phenotype (urine) test done.

I had to consume fish and eggs that night, as part of the test. The next morning, when I collected the second urine sample, the fish odour in my urine was really strong. I gave the samples to Pathology to get tested. I was really worried about the odour, and about how I would get rid of it quickly because I had to go to work the next day. I remembered reading earlier about taking tablets that had chlorophyll in them. I happened to have some alfalfa tablets in my cupboard, so I thought I would try them and see what happened. Guess what? By the end of the day, the odour was completely gone again.

The urine test unfortunately came back negative. I was disappointed, and the doctor said that TMAU had now been ruled out. I still wasn’t really convinced, but I let it go for a while. I found out recently that the urine test for Trimethylaminuria can be unreliable, and that some of the people that had the Phenotype test done in the United States have had negative results. However, when they had the blood test done, it showed that they had a genetic mutation related to TMAU (FMO3 Gene). If I have a genetic mutation related to TMAU, which I am fairly certain that I have, it only causes mild symptoms, possibly making it harder to detect in my urine.

My urine sample may have also come back negative because I had been on a vegan diet at that point, and had been taking the alfalfa supplements prior to having the urine test done, and only stopped taking them the day before the test. I may not have closed the lid fast enough or tight enough after I got the sample. All I do know for sure is that my fish odour definitely returned the next morning after consuming the fish and eggs the night before. Maybe I should stop taking the supplements for at least a month, and try the urine test again at some point, but that would make it difficult to work and be around other people for that length of time.

I discovered later that soy beans have a natural oestrogen in them (female hormones) which would probably have had the same effect as taking the oral contraceptives. A few days after my boyfriend moved in with me, I needed to take the morning after pill. The next day, the fish odour returned.

I went back on my vegan diet again on 01/08/2008. I started consuming nuts and seeds because I knew that they were really healthy, and is a source of iron and other nutrients. I have noticed that my fish odour has returned, and I can smell it in my urine. I just made a point of increasing the amount of alfalfa tablets that I take when I eat the nuts/seeds.

Now I know that I have to stick to a low choline diet, no animal products, or if I do eat eggs or cheese, I have to have them with alfalfa tablets (I’d gone back to being a vegetarian for a while, now vegan again.) I also have to avoid any hormonal contraceptives, and limit the amount of soy products and nuts/seeds that I have. I’m very lucky that I was able to find out what causes my fish odour. My mother and aunt have the same fish odour problem as well, and in the same area as I do.

My mother also had problems with bad breath, despite regularly going to the dentist. I think the odour may have smelt like a garbage/rotting smell. The dentist could not find the cause of the bad breath, and she was constantly brushing her teeth and rinsing her mouth with mouthwash, as much as 3 times a day, but she told me that the bad breath still didn’t go away, and that she was conscious of it.

My aunt has also had a smell of faeces. She had told me stories about her past. People would say to her that it smelt like she had not wiped herself after going to the toilet, or would be in the same room as her and say that it smells like a dog had soiled itself in here, and she knew it was her. They have had similar experiences as I have, and when I spoke to my aunt about them, I’m sure it must have brought back a lot of painful memories for her, and perhaps for my mother too.

They are currently doing the same thing as I am and taking alfalfa or spirulina tablets with their meals, which luckily has been successful for them too. We have also found that if we stop taking the supplements at all, or eat too much of the wrong foods, our odour problems return.

I am now in the process of trying to get the Genotype (blood) test done for TMAU, which is not available here in Australia. I will travel to the Monell Chemical Senses Center (research laboratory) in the United States at the end of next year.

Until I get the blood test done and it shows that I have no genetic mutation related to TMAU, I continue to believe that there is a strong possibility that have TMAU. I just have to prove it.

There are four main reasons why I would like to get the blood test done:

  1. I would like Trimethylaminuria put on my medical record. If for whatever reason I end up in hospital, or in a position where I cannot tell the doctors or nurses that I need to not be given certain foods or that I need to take supplements with chlorophyll in them (Alfalfa or spirulina supplements) to eliminate/prevent the fish odour, I may be given anti-biotics or anti-fungal creams/meds, which I don’t want. I know that the doctors would do the necessary testing, but I also know it would be assumed that I have a UTI, a vaginal infection, an STD such as Bacterial Vaginosis or Trichomoniasis which can cause a fish odour, a yeast infection, or be related to poor personal hygiene due to lack of knowledge of TMAU. I could avoid the unnecessary embarrassment, humiliation, and comments about my fish odour. I could explain to people that I have a metabolic/genetic disorder that can cause it, and perhaps they may be a little more understanding. I have always had a sensitivity to drugs. I have found in the past that when I have been given medications (not just anti-depressants, but also quite a few other different types of drugs that I’ve been given, including injections), I seem to either have a reaction to it, suffer additional side effects, or suffer the side effects for much longer than I should. This may be related to the possible mutation in my FMO3 gene, which produces a small amount of non functional FMO3 enzyme in the liver. The FMO3 enzyme may play a role in processing some types of drugs.

  2. If I am able to get tested and diagnosed, then I can get the other family members tested and diagnosed too, and have TMAU put on their medical records.

  3. There may be a possibility that I may have children in the future, and if I do have a genetic mutation related to TMAU, I’ll know for sure that there is a possibility that I could pass it on to my children.

  4. If I could prove that I have a genetic mutation related to TMAU, then I would be in a better position to provide support, educate and raise awareness of TMAU, body odour and Halitosis. People suffer from Social Anxiety and Depression because of their odour problems. It impacts on their self-esteem, and their ability to work because people assume that the odour is caused by poor personal hygiene and not showering, like other students and co-workers did with me. I have joined the two main Body
    Odour/Trimethylaminuria forums that provide support. I know the emotional pain and suffering they go through, as I have been through it myself.

Here is a link that you may find interesting. It’s from a nursing forum. This may give you a really good insight as to what my mother, aunt and I had to deal with when you have a fish odour between your legs, the frustration of not being able to get rid of it, no matter what we did, and the comments/assumptions that co-workers/nurses, (in this post) and other students (when we were at school) made.

http://allnurses.com/forums/f8/smelly-co-worker-133221.html

Now I am working on overcoming my Social Anxiety/Phobia, and improving my social skills, since my fish odour is not noticeable anymore. I am going to make up for the 10 years of emotional pain and suffering, and not being able to live up to my potential.

I am gone back to working in the nursing home as a Personal Care Attendant, in the same nursing home I was working in before. Next year, I am going to university to do the Bachelor of Music, because I am going to be a classical singer and perform, since that had always been my dream. I am also going to be a research geneticist/medical scientist, so I will do the Bachelor of Biomedicine at the same time. I’m more determined than ever to find a cure, or at least find some answers to what causes Body Odour and Halitosis. My first goal is to be part of any current research conducted on Body Odour and Halitosis. My second goal is to create my own charity/fund, raise some money, and open my own research center, specifically dedicated to Body Odour and Halitosis research.

I never ever thought that any of this would be possible for me at all, and I want to make a valuable contribution to this world. I don’t want anyone else to have to go through the emotional pain and suffering that my mother, aunt and I went through from having a fish/body odour. I want to educate other people about TMAU and other body odour problems so that sufferers are not held back like I was from pursuing their dreams.

I now have a wonderful, caring, supportive boyfriend. We met on a Social Anxiety/Phobia forum, and we had been chatting online for over a year. We both felt so lonely and isolated, neither of us had been in a relationship for at least 7 years. I never thought that anyone would possibly love me because of my odour, and he thought that no-one could possibly love him because he suffered from anxiety and depression, and his self-esteem was really low.

We chatted about possibly meeting each other. He knew that I had a fish odour, and where I had it. I made a point of telling him because I wanted him to know the truth, and not hide anything about myself, and I didn’t want him to find out after we met. I had enough rejection from people, and I don’t think I could have coped with any more. He still agreed to meet me anyway. He lived in Sydney, so he flew down to Melbourne to see me. After our first meeting, because of circumstances at the time, he moved in with me. We’ve been together for nearly 9 months now.

He has taught me that there are good men out there. I have learnt so much about myself, and him, and there have been so many positive changes for both of us. I am so grateful to have him in my life, and every day that I get to spend with him is a blessing.

I am also singing in a choir, which I absolutely love. I have the privilege of being part of a group of wonderful, remarkable women who have become my best friends. I have learnt so much from them, about music and singing, and about life. I aspire to be like they are when I get to their age.

Writing this story, and talking to my mother and aunt has brought us so much closer. I love them so much, and I want to help all of us by getting a diagnosis. None of what I have done so far would have been possible without them, nor would I be where I am today without them. They are always there for me, and been there to support me and help me whenever I needed it, and I am very grateful to both of them. I am very fortunate to have had such a wonderful mother, who had done a great job of raising me, and taking care of me, even now. I am also very fortunate to have such a wonderful aunt in my life as well.

I know that other people with body odour or Halitosis haven’t been as fortunate as I have to have been able to at least manage their odour problem. By writing and publishing my story, I hope that it will help someone. Even if it helps just one person, I would be happy. I want to raise awareness and educate people about body odour and Halitosis in the future. People need to realise that body odour can be caused from foods in a person’s diet, can be a metabolic disorder that may not have a cure or a quick fix to get rid of it, and most of the time it is not caused from lack of showering, or from poor personal or oral hygiene.

I am here if anyone needs support, or someone to talk to about their body odour or Halitosis, what they are going through, or anything else really:) Please message me privately on my profile to connect with me personally.

I have also started the Support Trimethylaminuria Research cause on Facebook to begin with. I want to try and raise $1,000 to go to the Monell Chemical Senses Centre by 31st December. I am going to either change my current cause, or I may start a second cause to raise money for body odour and Halitosis research.

I could really use the support, or any donations would be appreciated. The more donations the researchers get, the sooner we can find a cure or solutions for sufferers of Body Odour and Halitosis. The donations do not go to me; they go directly to the Monell Chemical Senses Center.

There is hope yet,

Kristen.

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Thank you kristen for sharing your experiences, I believe I also have tmau even though I haven’t been diagnosed yet, the problem is that there is no available tmau testing center in the country I live in.
I’ve been taking Chlorophyll twice a day for a month now, and I can say it is effective in eliminating my BO. I am hopeful that one day, we could fight this disorder and live a normal and happy life. I’ve been a bullied since I was in grade school because of this disorder, I didn’t know tmau exists until I searched for BO cure in the internet last year and it happen that it was a support group for tmau. I actually cried because I thought I was a freak for having this BO.

Hello Everyone, just giving you an update. I got a referral from my doctor to the Genetic Health Services so that I could try and get the blood test for Trimethylaminuria. They then passed my doctor’s referral to the Royal Children’s Hospital, which is a major hospital here in Australia, so I’m starting to make some progress. I’m also trying to find out what is wrong with me. I’m having some health problems that are preventing me from working, and I’ve lost so much weight it’s really starting to get scary.

I also found out from my mother that I have also had a faecal odour which started when I was a child, so all three of us have had our fish/faecal/gargage odour since we were children, which makes more sense. I thought my odour problems only started since I was about 15 years old.

I’m currently trying to get into my degree at the University of Melbourne in 2009. Because I am a mature age student, I can state my case as to why I should be accepted into the University. They are going to look at my academic results, because they are less than 10 years old. I know my results were poor, because I suffered from Social Anxiety Disorder, which I didn’t know at the time. I also had the fish odour, and comments were made by other students, so my self-esteem was very low at the time. My mother would not have allowed me to get a referral to a psychologist and get the treatment I needed then, because she wouldn’t have believed me. She would have not talked about her odour problems with me, I’ve only really found out about them in the last few years, and I had never noticed them on her, or my aunt.

I know these factors had a major impact on my academic results. The only subject that I did do well in was music, and that was only because I had a natural ability for it. If I could prove that I had a medical condition, and because of this medical condition I had psychological/mental health problems that affected my results, I might have a better chance of getting into my degree. I’ve only got until 03/10/2008 to supply any supporting documentation, so I’ve had to become very persistent and keep contacting the doctors. So much is hinging on my diagnosis right now.

Hello GeepeaGee,

Thank-you very much for your reply :slight_smile: In answer to your question: I am on a vegan diet, so I don’t eat any animal products, and no refined or processed foods. I eat fresh, organic fruit and vegetables.

I also eat wholemeal pasta, bread, cereal and legumes such as peas, beans, etc, nuts/seeds, and some soy products, but if I do eat those, I have to have alfalfa/chorophyll tablets with the meal/snack, otherwise my fish odour comes back.
Have you tried cutting out or reducing animal products in your diet? Maybe that might be a good starting point.

You are definately not alone in this. There are many other people like us who suffer from body odour and halitosis. Keep your chin up, and if you need any help or want to ask me any more questions, feel free to contact me:)

I am so happy to read your success story. It is wonderful that you found someone as well. I am interested in what you eat on daily basis. I have been trying to get my odor under control, but I can’t seem to get it right. I have the fish smell, but most of the time I smell like a bowel movement, so I can identify with all three of you. I am glad to have some communication on this post, it keeps my moral up and actually makes me feel better that I am not alone in this.

READING YOUR STORY HELPED TO GIVE ME HOPE .THANK YOU SOO SOO MUCH THIS WAS SOMETHING I NEEDED SO BADLY. I FELT LIKE I WAS REACHING MY BREAKING POINT. NOW I KNOW THERE IS HOPE I JUST HAVE TO WORK A LITTLE HARDER TO FIND MY HOPE. I WAS TRYING TO JUST LIVE I AM MARRIED WITH KIDS AND THEY NEVER NOTICE ANYTHING. I FEEL LIKE I LIVE FOR THEM BUT LATELY NOT EVEN THAT HAS BEEN ENOUGH. I NEED TO FIND MY OWN PLACE IN THE WORLD OUTSIDE OF BEING A MOTHER AND WIFE.

Hi everyone… thank you all for posting your experiences and emotions. I do realise what we are facing can be overcomed. It God we have hope…one day at a time and we will find the answer.

For those of you who are married and with children, for example “I am who I am”, how does your husband react to your situation and did you married before the odor problem or after. I am curious to know what a relationship is like for persons facing this condition.

Thank you all very much.

Hi Betsy,

I deeply apologize for not writing back sooner.i am not able to get online that often and when I do I don’t know how to use this site very we’ll.But to answer your question my husband doesn’t notice anything. I have asked so much my husband and kids started to get angry with me. I believe the odor has been there but I was always to busy living my life to pay ppl any attention.

My husband sees the way ppl react but he just smiles and he says you can’t stop ppl from talking. My family comes over and I go visit them and they always tell me they don’t notice anything. So now I just try to live one day at a time. My two older kids are always around me and they even bring friends for me to meet. And I always say what did your friend say? Did they ask about the smell? And sometimes I ask them myself after I get to know them.

Now I do go out to a club every now and then and I make new friends sometimes.But I have a lot of trouble out of my neighbors. They always say something but never to my face.I pray a lot and i try to be civil, but I will not be uncomfortable at home.I told myself I had to make some kind of a stand. So hey they talk from their yard and I smile and say a small prayer and keep going.

Sorry for the long reply. Take Care of you first because nobody else will!!! God Bless

PS I am taking the alfalfa and chlorophyll and amodified diet. no meat eggs soy dairy lots of water but I never notice any reactions until about 2 weeks before my period.

I realized that that can be a problem, especially for people who have hormonal changes like young women, and who have changes in metabolism. It comes out in the skin, the waste products from these changes, and also the sweat makes it alot worse. What I suggest, is using a natural mineral that helps to ease off the odor naturally such as algae and volcanic minerals and rub it gently on the affected areas before cleansing thorougly with soap and water. It helps kill the bacteria and keeps the area protected from odor causing organisms.

I know it might sound silly but there is a product that seems to do the trick. It’s called GeoDeo deodorant and it has all natural minerals so it helps eliminate the odor.

1 Like

Hello.

I love reading your story, its amazing. I just need some advice with the relationship side of dealing with TMAU. My partner is suffering TMAU and suffering the anxiety. I dont have TMAU though am willing to know everything about the conditions. We have our ups and downs though we are always open to each other about the topic. Im a vegan so i encourage healthy eating to him also. Any other information you could give to me would be amazing. Thankyou.

Thank you so much for your story. I have had the same issues. My husband, kids, and family members had really almost convinced me that this was all in my head at one point. They do not smell it at all. Last week my coworkers actually went on strike and refused to work until I was removed from the work site. This is so unbelievable. I am following the diet and taking the supplements but when I work hard physically I just can not stop the smell from coming. It is so much easier to know there are others out there and I am not alone. Thank you all.

2 Likes

Thank you for sharing. I too am a long-time sufferer. I find that its very important to find and talk to others like you. I truly hope that one day there is a cure for this disease. Until then we should all help each other out with tips and support. In my case, here are some tips/things that have helped me come to terms with my disease, I hope it can help some of you:
-Using Talcum powder (this is a MUST in the summer)
-Using unscented moisturizer.
-Drinking lots of water.

  • Activated charcoal which I usually get from Amazon.com (I find the Braggs capsules better than the tablets- careful if you are taking prescription meds as these may stop them from working).
  • Chlorophyll (from Amazon, I get the pure version called World Organic and only take it when I go out- I find the peppermint version too weak)
    -CBD oil drops from Get Tranquil CBD (I get that from GetTranquil.com I get original flavour- I get this because I find that my smell is worse when I am anxious and tense. These drops help me relax.)
  • A Girl’s Guide to Managing TMAU: My Personal Experiences, Diet and Solutions Kindle Edition by Katie Turner (from Amazon, this book is a godsend, it says it’s a girl’s guide, but I found that the tips can be used by anyone. It has lots of helpful tips/ideas on how to manage the disease)
    -Ashley Smells Like Garbage!: First book in the series: A Child Like Me Kamau Mahakoe (from Amazon—This could be good if you have a child that suffers from TMAU)
    -The Boy Who Smells Like Fish (2013)- Movie about a Boy who is living with TMAU.

We truly need to raise more awareness about this horrible disease so don’t be afraid to open up to your loved ones also if anyone else has any tips which could help, please share them.

Hi All!!

I found something that works well for my fishy/greasy or strong chemical like odors. The odors my body was producing were getting out of control ( I mean nostrils would burn). It got to the point that I couldn’t keep a job or socialize with people anymore no matter how often or recently I had showered. However, bills have to get paid and this was not acceptable. I think that, after struggling with this issue for a couple years, I found the solution to my problem.

I started to use Lysol laundry disinfectant and unscented laundry detergent (Arm and Hammer) when I wash my clothes to remove grease, bacteria and odors from my clothes. I also now add the Gain In-wash Scented Pellets to the wash so that my skin absorbs the smell. Before this would have been a horrible idea because there was no scent that could mix well with, mask or remove the fishy odor my body produced.

Then I worked on removing the bacteria from my skin, and balancing its Ph levels. I tried every body wash I could think of to remove odors to the point that my skin hurt from how dry it was. This failed and instead the added stress just made me smell like a bug spray, fish or grease. After trying multiple body washes like hibiclens, unscented soap bars and even vinegar, I found that the Vagisil Odor Block Unscented body wash removed the fishy, greasy odor my body produced. This is the only one that removes the fishy smell from my pores. It also works so long as I scrub my body, hair, underarms and groin area multiple times until the odor is gone. Meaning, I had to reapply the body wash gel to the loofah three or four time while in the shower. I go through one bottle ever 4-5 days. Again, it’s well worth it since it’s the only wash that removes the malodor pretty well.

I then dry all my areas well and apply 10% benzoyl peroxide gel (acne treatment) to my entire body. At first, it smells like I just got out of a pool. So, after the cream dries, I apply a drop or two of the Seismic Blend TMAU Vanilla Bean Fragrance lotion to a hand-full of unscented lotion and then rub the mixture on my body. For some reason even unscented lotion alone wasn’t helping to improve my smells. However, adding the benzoyl peroxide cream made me smell the cleanest I’ve ever smelled. I just have to let the 10% benzoyl peroxide cream dry before applying the lotion or it stings so badly. Also, this gel can stain your clothes, dry your skin or make you sweat more. However, the sweat had no odor to it. At least this was my experience.

After the acne gel dries and I apply the TMAU and unscented lotion mixture, I let the lotion dry before I get dressed. Be very careful to not add more than just a couple drops of the TMAU lotion to the unscented lotion because then the odor will be nauseatingly sweet. It would be like going from one extreme to another. I also carry Summer’s Eve Fragrance Free Cleansing Cloths or Always Feminine Wipes (Spring Blossom) to wipe my areas and reapply the acne cream and deodorant throughout the day. I also carry these because after washing my hands with any soap, my hands either smell as if I soaked them in bleach, or it intensifies the strength of the scent if the hand wash oooor I smell as if I am wearing bug spray. I need those to wipe hands and arms after washing to remove all odors before lightly dabbing on a small mount of the TMAU lotion. The amount I add is about as small as the period at the end of this sentence. It’s that strong.

As for the deodorant, after almost every deodorant I used failed to work because my body would transform the scents into something they weren’t supposed be, I found one that works well for me. I use Women Mitchum Triple Odor Defense Shower Fresh deodorant. It smells as if I’m wearing a light, clean perfume. This brand also makes a deodorant for men.

In case the body wash and benzoyl peroxide gel steps are more than any of you wishto follow, there are many Benzoyl Peroxide body washes out there you can try. Just see wish works well with the odors your body creates. For me, however, this works for my body so if it isn’t broke I’m not about to try to fix it.

Finally, the change in my body odor has improved greatly after following this routine. Instead of smelling fishy after only being out the shower for 10 minutes, now I don’t smell any foul odors well into the next day. I wanted to cry when I found a routine that started to work for me. It took me constantly trying new things, changing my diet, reducing interactions with people to reduce stress, spending money on trying out different online recommendations to try to make something - anything remove/treat these odors. I went through almost everything you all mentioned above and was super embarrassed and depressed about my odors. Now I can feel comfortable around other people and keep a job.

Please let me know if you find that this ends up helping you, too.

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Have you tried Thayers Witch Hazel Medicated pads?

They’ve worked for me since my routine helped only if I wasn’t in a stressful situation. I use it on all the areas of my body that sweat and it’s helped me. I use this behind my ears, neck, face, underarms, breast area and groin area. The first few times I used the wipes (please don’t judge me) I removed greasy looking gunk from my underarms and other hairy areas. Now I use it throughout the day all over the areas that tend to sweat and I can actually spend time around people without anyone sniffling or rubbing their noses or looking at me with disgust or shock. Also, after day two, I was able to go most of my day with just a light dab of deodorant.

I’m going to meet with friends this weekend who I haven’t seen in months due to my embarrassing odors and ask a few honest ones what they think about the change in my odors. I’m certain they’ll give good feedback. I will keep you all posted on their responses.

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