Unknown Body Odor

Posted by Deprest @deprest, Jan 4, 2012

I need help! I’ve got a bad odor coming from my body, that I can’t smell. Yes it’s hard to explain. Doctors think I’m making it up. In public people avoid closeness, coughing, holding their noses, avoiding me at all cost. I’m a prisoner in my home. Don’t venture out unless low on food and pick times to do it. I’m constantly shamed.im healthy, clean. Homes clean, I can’t explain. Have spent last two yrs going to every type doctor to no avail. My family can’t smell it either. Has anyone heard of this?

@turdlez

Hey @hopeful 33250,thank you for your response.A little bit about myself:I'm 21 y/o,5 foot 9,weigh 60kg.Been to three doctors.The first did some test(stool sample) and results were pus cells found.Put me on antibiotics.There were no signs of improvement,the oduor got worse.The second doctor put me on acid blocking drugs without any tests.Still no improvements.The third doctor did some tests and found typhoid,parasites,malaria and amoeba.Proceeded to put me on antibiotics and other meds for ~3 months but the oduor gets worse everyday.The tests usually use blood/urine/stool sample.Yes,its an everyday occurrence.I do have bowel movement issues-I have to go more than once for it to be complete,undigested food particles in fecal matter,constipation and loose stool.

Jump to this post

@turdlez I appreciate the added information. Have you had an upper endoscopy (EGD) and colonoscopy as well?

Given your history of one doctor finding, " typhoid, parasites, malaria and amoeba" I'm wondering if you have seen an infectious disease specialist?

If this were me, given the unusual characteristics of this disorder, I would undoubtedly seek a second opinion from a multi-disciplinary medical team, like a university medical school or a Mayo facility. Have you considered this?

REPLY
@turdlez

My life's a ruin now that I literally smell of feces.Anxiety,depression:I have the real estate version of them.Started back in 2018,just at the eve of my 20th birthday.It really sucks.If you suffer from this,how do cope? Anyone managed to get the condition under control?
-turdles

Jump to this post

How horrible for you…especially at your young age where friendships are so important. I saw a documentary once about just such a condition. Someone worked in an office and no one could tolerate the smell of this person. It turned out that he had a liver condition; nothing serious. It was due to an inability to handle protein, as I recall. Have a scan of your liver. Also check for diabetes. Cut out all sugars and eat plenty of vegetables and drink lots of water. I'd love to hear that this made a difference. If you are overweight, lose weight. I also read that obese people have a strong body odour not due to a lack of cleanliness but just due to the condition. This could be because of what they eat (high carb diet). Your body is telling you something. You need to listen. Good luck!

REPLY

Thank you for all your posts. I thought I was the only one with this going on. Ive been in deep depression for the last 5 months because of the smell and the nastiest taste in my mouth 24/7. Im losing my mind and ready to quit. Ive been to several doctors and all my labs come back normal. Cat scan, normal now theyre doing endoscopy and colonoscopy. This has affected every aspect of my life and its just getting worse. I dont ever want to be around anybody. Im seeing people post they cant smell it themselves but I do and so can everyone else. Ive tried so many things as far as diet and somedays its not as bad as others but than it comes back out of nowhere. Im to the point if yhey cant find out what it is I dont want to live anymore. This is no way to live for anyone.

REPLY
@deprest

Hey guys you sound like all the doctors I’ve seen. It is a real issue. It’s there, not making this up. If you’ve never heard of this don’t answer, I’m depressed as it is. Do you think I’d lose two yrs of my life for nothing?

Jump to this post

Im going through the same thing for 6 months. I have all the symptoms of Trimethylaminuria which all the doctors Ive seen so far havent heard of it so they are telling me its in my head so they wont even test me for it! Ive been so depressed and pretty much in isolation because of the odor. The only difference with me is I do smell it 24/7 and everyone around me smells it especially at work. I probably spend 1/4 of my pay on air fresheners. Its so embarrassing and not one doctor will listen to me. No one should have to live like this, I told my nurse practitioner that so she sent EMT's to my house for being suicidal and was transported to a emergency psych ward for 3 days. Now Im afraid to tell anymore doctors about this.

REPLY
@csbowles

I remember hearing about this! Read this article: http://www.drdonnica.com/today/00006748.htm

Jump to this post

cs Bowles. Very interesting article for a mystery medical problem. Hope it helps Depresed.

REPLY

Hi @becomingopeless and @soldier,

I can only imagine living with this disorder cannot be easy! Here’s what I found:
Trimethylaminuria (TMAU), also known as fish odor syndrome or fish malodor syndrome, is a rare metabolic disorder where the body loses the ability to properly breakdown the timethylamine (TMA) found in certain foods. Trimethylamine, which has a fishy odor, is produced in the intestines when certain types of food (i.e. eggs, liver, legumes, fish and some vegetables) are digested. As trimethylamine begins to accumulate in the body, it is released in the sweat, urine, reproductive fluids, and breath. This leads to the characteristic unpleasant odor. https://rarediseases.info.nih.gov/diseases/6447/trimethylaminuria

Although there is no cure for trimethylaminuria, the following are some ways to reduce symptoms of odor:
– Avoidance of foods that contain trimethylamine and its precursors (choline, lecithin, and trimethylamine N-oxide). Trimethylamine is present in high levels in milk obtained from wheat-fed cows. Choline is present in high amounts in: eggs, liver, kidney, peas, beans, peanuts, soy products, brussels sprouts, broccoli, cabbage, and cauliflower. Trimethylamine N-oxide is present in seafood
– Low doses of antibiotics. This decreases the amount of trimethylamine that is made by bacteria in the intestines
– Laxatives can decrease the amount of time food remains in the intestines and therefore reduce the amount of trimethylamine made
– Nutritional supplements (activated charcoal and copper chlorophyllin) can decrease the concentration of trimethylamine in the urine
– Soaps with a moderate pH (between 5.5 and 6.5) can help remove the secreted trimethylamine from the skin
– Riboflavin (vitamin B2) supplements can enhance any existing FMO3 enzyme activity (which breaks down trimethylamine)
– Avoidance of exercise, stress, emotional upsets, and other factors that can promote sweating

@becomingopeless @soldier, I realize that this is frustrating and that you're doing all that you can – we're here to help. You might also be interested in viewing this new study which provides more insight into the causes of trimethylaminura (TMAU): https://www.sciencedaily.com/releases/2017/02/170215084717.htm

REPLY

My life's a ruin now that I literally smell of feces.Anxiety,depression:I have the real estate version of them.Started back in 2018,just at the eve of my 20th birthday.It really sucks.If you suffer from this,how do cope? Anyone managed to get the condition under control?
-turdles

REPLY
@turdlez

My life's a ruin now that I literally smell of feces.Anxiety,depression:I have the real estate version of them.Started back in 2018,just at the eve of my 20th birthday.It really sucks.If you suffer from this,how do cope? Anyone managed to get the condition under control?
-turdles

Jump to this post

You can get through it. I've had this for 20+ years. It's hard. It's really hard. But don't give up. We only live once…. keep trying to look at the good things and keep trying to find out more, experiment with food, beverages, clothes, soaps, see if anything you do makes it better or worse…. What helps my mental state is getting some exercise, outside, this way I don't worry too much about the smell affecting others and it helps getting rid of the negative thoughts. Also, find someone you can talk to about this. Family, close friend, or if you can afford some professional help.

REPLY

How difficult that must be for you! I watched a documentary several years ago. It was about just such a condition that resulted in the person smelling bad…and co-workers in his office unable to tolerate the smell. It was discovered that it was due to a liver condition. You could ask your doctor to do testing. And perhaps see an endocrinologist.
I have also read that excess body weight causes body odour…even if one is clean.
Good luck!

REPLY
@afrobin

How difficult that must be for you! I watched a documentary several years ago. It was about just such a condition that resulted in the person smelling bad…and co-workers in his office unable to tolerate the smell. It was discovered that it was due to a liver condition. You could ask your doctor to do testing. And perhaps see an endocrinologist.
I have also read that excess body weight causes body odour…even if one is clean.
Good luck!

Jump to this post

@afrobin I definitely think it could be caused by a liver malfunction. After I had a liver transplant my husband told me that I did have a mild odor before. It wasn’t strong enough to be a problem though.
JK

REPLY

Hi @deprest I have the same symptoms since March/2019. I am from Brazil and the doctors don’t know what i have. How are you now? I think I have dysbiosis or SIBO, these issues can cause body odor. I hope we discover the problem! Stay strong!

REPLY

I knew the sweetest nun with TMAU. The first time me and my kids met her she immediately explained it to them. She also gave them choices about how they could cope with the smell. She could light a candle ,open a window, etc. She made it about them . I've never met anyone else offer suggestions to others about how to deal with a disease they have the way she did. She said when she first noticed the odor and saw other people could smell it she was devestated. She went on to become a teacher and a nun. She was also the greatest advocate and educator. She still got depressed from time to time. She never quit!! The most amazing woman!!

REPLY
@becomingopeless

Im going through the same thing for 6 months. I have all the symptoms of Trimethylaminuria which all the doctors Ive seen so far havent heard of it so they are telling me its in my head so they wont even test me for it! Ive been so depressed and pretty much in isolation because of the odor. The only difference with me is I do smell it 24/7 and everyone around me smells it especially at work. I probably spend 1/4 of my pay on air fresheners. Its so embarrassing and not one doctor will listen to me. No one should have to live like this, I told my nurse practitioner that so she sent EMT's to my house for being suicidal and was transported to a emergency psych ward for 3 days. Now Im afraid to tell anymore doctors about this.

Jump to this post

Hi @becomingopeless,

How have you been? Are you feeling any better?

REPLY
@kao

Hi @deprest I have the same symptoms since March/2019. I am from Brazil and the doctors don’t know what i have. How are you now? I think I have dysbiosis or SIBO, these issues can cause body odor. I hope we discover the problem! Stay strong!

Jump to this post

Welcome to Connect, @kao. Are you able to share more about yourself? What treatment have you tried? Have you found anything in particular that helps, even temporarily? Muitas felicidades:)

REPLY

Hi @afrobin, I have to agree with @mutter3. It is not right to make assumptions. One cannot correlate a job choice or vocation with a medical diagnosis or to assume how someone conducts their life.

As per the Community Guidelines https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/ I'd like to underline item 2.
2. Remain respectful at all times.
– Be inclusive. Not everyone shares the same religious or political beliefs. Don't impose your beliefs on others.
– Personal attacks against members or health care providers are not acceptable. Such posts will be removed.

I have deleted both the offending post and the responses. Should you have a concern about the moderation actions, please write to me using this form https://connect.mayoclinic.org/contact-a-community-moderator/

Let's return to supporting members.

REPLY
Please login or register to post a reply.