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?

Interested in more discussions like this? Go to the Digestive Health Support Group.

@gailb

@mucho3

Welcome to this wonderful community on Mayo Connect. I'm sorry about your body odor issue. My son had the same problem with his feet as you seem to. I also recommend seeing a foot doctor. One of the main problems my son had was his choice of shoes. He's vegan and was wearing shoes that were made of materials other than leather, usually plastic based. His cloth shoes were also a problem because they were well used (old) and absorbed his sweat which spoiled and the odor became sickening. He couldn't smell it either. Since your problem is relatively new, it's probably your shoes. I'm assuming you bathe on a daily basis.

So, my recommendations:
- always wear cotton socks ("Bambas" brand are great; I just got some)
- buy new shoes that are either leather or materials other than vinyl/plastic
- throw away any shoes you are currently wearing as they may have bacteria in them that won't go away even with
washing
- use a foot powder in your shoes.

Try those things as you await a doctor appointment. You might also try deodorant on your feet. Good luck. Please keep in touch and let me know if any of my recommendations is helpful. We're here for you.

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Thank you but ive seen the doctor i tested for DKA but he said i dnt have diabetes he gave anti-infectional drugs and said i must came back i told him about the TMAU but i dbt think he knows
ive tried the deodrant spraying my feet but it doesnt help
Im so ired of this i jiss wish to get it over
with you

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I'm experiencing the same. Same responses from Dr. and people. Its very embarrassing. It's nothing to do with your hygiene clean as a whistle. It stems from within the organs somewhere Dr. can't find it and don't believe me. But I'm going to keep on asking questions until he do. But keep your head up continue to love you even more by staying positive. It's nothing we/you did or can control. With that said, likewise do not allow it to define or control you..

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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.

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@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?

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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.

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@csbowles

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

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

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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

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@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

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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.

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@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

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Hello @turdlez and welcome to Mayo Connect. I am sorry to hear of this bothersome problem you have. In order to understand a bit more about this odor, could you explain a little about it? (Please share with us only as you are comfortable doing so.)

The things that might help understand this problem would be: What has your doctor said about this? What sort of tests have you had? Is this an everyday occurrence or does it come and go? Is constipation also a problem?

I look forward to getting to know you better. Will you post again?

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@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

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@turdlez I am sorry to hear about your problem, it must be discouraging. It certainly sounds as if you have checked numerous resources to discover the cause of it. There is a discussion on Intermittent fecal/sulfur breath odor that may be of interest to you. I hope it will give you some answers.
https://connect.mayoclinic.org/discussion/intermittent-fecalsulfur-breath-odor/

I am sure if you persist that you will find some explanation, and hopefully a solution, to this. Please keep us posted.
JK

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@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.

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@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?

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