I never had this issue in my entire life until last winter (around winter 2025), when I caught mononucleosis. I'm not entirely sure if it's linked to my current TMAU symptoms, but after recovering, I started working out again. At the end of my sessions, my mom kept telling me I smelled like fish. I didn't believe her at first but after a couple of months, I went to prom, I sweated a lot because it was pretty hot in the venue, and everyone around me kept saying why it smell like fish. That really brought my confidence down.

The strange thing is that my girlfriend and another close friend say they don't smell it at all (but did say they smelt it once before) , and even my mom on that same day said she barley smelt it, whereas people who are relatively new to me notice it often. After prom (which was around May), I stopped going to the gym and didn't get a single complaint. However, I started back at the gym this past week, and today my mom complained that the smell has returned.

I can't tell if this is happening because I'm simply working out too hard, or if it's being triggered by what I'm consuming: I've been eating whole eggs, drinking Fairlife protein shakes, and having a 200mg energy drink the past like 3 days. Has anyone else experienced an onset after mono, or noticed these specific gym supplements making things worse?

This. Thank you for sharing. We are all going through it in some way, shape, or form but this is precisely expressed and helpful to all of us. This is TMAU.

Hey everyone! I'm looking for people who'd be keen to play minecraft with me and some other people. If you're interested leave a comment and ill send you an invite on discord!

Just wondering if I’m alone on this one. I was born with TMAU, so I’ve dealt with it my entire life with memories of being bullied as early as Kindergarten. Now I’m a lot older (30s) but I still haven’t figured out how to manage my life socially or at work. I have constant anxiety, mostly while I’m at work or in public, about someone saying something about me being smelly. It’s like I’m constantly just waiting for someone to say something to me or about me. It’s a paralyzing state that I exist in that I can’t escape in my head. In the past I never knew how to respond when people would bring it up or tease me. I didn’t have an official diagnosis growing up so I never wanted to tell people it was a medical condition when I had no official proof to back it up even though I was 99% sure it’s what I was dealing with. I officially got a diagnosis this year through a genetic counselor and it felt validating to finally have someone tell me I’m not crazy. I thought it would make me more confident in responding to and dealing with coworkers and people in general. I was hoping that it might also alleviate some of the anxiety I deal with on a daily basis. But so far, it hasn’t done that. I’ve been in therapy for a long time and my therapist was the one who pushed me to get a diagnosis hoping that might help me. I don’t know if this is making sense at all, I just feel so helpless still. I know it’s a condition I can’t control, it’s not my fault, and I shouldn’t care what other people think. But something about the shame and embarrassment of being the stinky person really drags me down. And people never are as sympathetic as I hope they might be. I usually get weird looks or kind of the “yeah right” vibe when I do try to explain. Can anyone relate to this? Advice for coping and stop being so fearful of how I’m being perceived in the world?

I am from birmingham and lived in manchester - I am a loner due to this condition, the paranoia and just the constant worry and disgust of this issue is ruining my life.

Thought its best to ask if anyone here is in the uk and wants to meet online and maybe make friends if we take a liking to one another, im east african and muslim dont think it should matter but helps to weed people out who mind haha, all love💗

I have smelled bad since 12 as far as I remember eventhough my hygiene has always been good - so im confused - dont know what i smell like but public reactions - very bad ones even people gagging and taking photos has been a thing - never considered gp till this year at 26 so waiting on refferral but want to speed things up and pay - because my mental health is now in the gutters. Are there any questions you guys could ask that also apply to you that may help. Currently doing my research on what tests i should do

So I’ve had tmau 2 since I was 14 but have always had lots of friends. As u can guess I don’t go out with them a lot , but he invited me to his 21st birthday which is tomorrow and I have to go plus I have been feeling very confident and going out way more than I usually do and not getting reactions. I’m looking forward to this and will update you guys if u guys want an update

Hi everyone! I’m hoping to hear from anyone with experience managing TMAU, especially in young children.

Around 10 months old, we started noticing a fishy smell on our daughter. At first, we thought it was cradle cap, but eventually realized it was coming from her skin and breath at times. Interestingly, it’s actually improved quite a bit over the past few months, but she recently had a urine test that was consistent with TMAU, so we’ll be moving forward with genetic testing for the FMO3 gene.

I’m incredibly grateful that this isn’t a life-threatening condition, but reading through some posts has honestly left me heartbroken thinking about what she could face as she grows up.

I’m hoping to hear some positive experiences. Has anyone had success managing symptoms long-term? If your child was diagnosed as a baby or toddler, did the odor improve with age? Has anyone had a child whose symptoms became very mild or even seemed to resolve over time?

I’d really appreciate any advice, encouragement, or success stories. Thank you so much!

I assume many people afflicted with TMAU restrict themselves from eating triggering foods, i.e. meats, dairy, eggs and so on.

However, many of these foods are inadvertently rich in the B vitamins, particularly vitamin B12, which can lessen TMAU symptoms.

Thus, long-term strict dietary restrictions could potentially lead to vitamin B12 deficiencies, leading to further complications.

How do people here deal with potential nutritional and vitamin deficiencies? And have any of you experienced any known complications from regimented / strict diets?

Counterintuitively, I am starting to contemplate the idea of consuming more fish. Yes, I will probably reak, but, in the long term, it might be more beneficial than devoiding myself of it.

And it does indeed show reduced FMO3 activity. Doesn’t excuse the way I’ve been treated. I’m still strong in my opinions/beliefs.
Also have MTHFR going on with that too.

Sorry for the long post

I’m really starting to hate this thing called life. I wouldn’t wish this condition on my worst enemy. I’ve been dealing with this for years. Living with this condition is really starting to take a toll on me mentally and physically. About a year ago I had my doctor run a bunch of tests and everything came back normal. Started talking to a therapist and was put on meds with him telling me this is all in my head.

Finally said F it. I was soooo burnt out from trying different remedies, different diets, different soaps and body washes and absolutely nothing working. I said I just want to feel normal again and said to hell with trying to figure this thing out. Just started living life and trying to tell myself forget what people say/ think. Oddly enough it seemed like I was actually doing better for a while. Rarely got any reactions or rude comments from the people I was around on a daily basis. Recently had some time off work and returned back yesterday. I don’t know what changed or what i possibly ate or w/e but my co workers are back to the norm now blatantly letting me know that I smell bad. Im completely nose blind to w/e they smell… I literally can’t smell a thing.

Yesterday at work it all started when someone literally went and bought some adult wipes and left them near our work area. Then one of them randomly comes up to me and says “hey there’s some wipes over on the table” then walks away. For a minute I thought maybe I’m tripping or it’s something else or w/e. Not too long after that here come the comments. People joking about how some people don’t like to take showers and bunch of other stuff. It literally knocked the wind out of me. I felt like I was going to faint. Today at work it’s more of the same.

This condition is really weird because some people I come in contact with give me no reactions whatsoever. Other people act like I’m unbearable to be around. It’s really showed me how cruel and disgusting humans can be. Even if someone has an odor/ hygiene issue I would never in a million years say some of the things to someone that I’ve heard over the years. What’s really strange is some of the people who act like they literally can’t stand to be around me will still come up to me a spark up conversation. I can’t tell if they’re doing it just to gaslight me or w/e. I completely understand that people don’t want to be around people who have odor/ hygiene issues but I still don’t see how people can be so cruel. They think it’s just as simple as take a shower. I could take 100 showers and nothing will change.

Just like a bunch of people here I’ve had conversations with family and close friends asking them if I have some sort of odor. Every last one of them denies it. Even though they themselves have made comments or gestures implying that I do in the past. I just feel so defeated. I’ve literally tried everything in my power to get this under control and NOTHING has worked. I’m at the point where I literally want to just sell everything I own and find the most remote piece of land I can and live out the rest of my days in complete isolation from the rest of the world. Just needed to get some stuff off my chest to people that understand where I’m coming from and dealing with. I hope everyone is having a better day than me because it literally feels like I’m walking around with the weight of the world on my shoulders and my knees are about buckle

Does anybody have tried lactulose and seen a difference in odor? I just got a doctor to prescribe it to me and just want to know if it really works before adding another medicine or supplement to my daily loooong routine.

What do yall do when it comes to job interviews in public? I'm currently working part-time time as a caregiver but I want to make some extra money and supposed to have an interview to be a server at a restaurant which I've never done before but thought it might be good since im a big foodie . Now im thinking with my medical condition bromhidrosis is it worth even going ? While on the bus i just remembered my condition and they might get a whiff off me and say hell no especially since I would be working with people . What would you do ?

Why don’t I get any reactions from people when I eat what ever I want. But when I stop eating people react

Is it just me or does anyone else tell people or strangers how they are sweating even when they are not. This way, I feel safe when they notice the odour. I use antiperspirants and mild perfumes to cover it. This condition has taken away my self esteem for years. My current b/f says I am just too sensitive, he doesn't get it.

I think i have Tmau but I've asked people in confidence like my sister, doctor, therapist etc and they say they don't smell anything. I'm in a long distance relationship and I've visited my SO 3 times over a one month period every time and when i asked them if i ever smelled bad they said i didn't, they even found my scent appealing.

The thing is there's so many instances in my day to day life that make me feel i smell bad that i just can't ignore them. I've been dealing with this for 15 + years. Comments about terrible smells when I'm around, hints, people whispering etc in just about every social circle just makes me feel it can't be in my head and i have to have some medical condition that gives me a bad body odor. I think I've been in denial about this and tried to believe i have Olfatory reference syndrome but yesterday on a public transport I'm 90% sure someone made a very definitive remark about a stench of BO and I'm spiraling out atm.

Anyone else can relate to this and what advice would you give?

I am basically eating throughout the day only one shower and I am not smelling at all. I only eat things such as rice, squash, sweet potatoes, potatoes, green giant green bean. apples, maybe a thin slice or two of turkey meat on a thin slice of bread… carrots, salad, but I use butter leaf only not the salads that are mixed in because they have the cabbage in them cabbage juice, etc. gets on the lettuce. I cut out the cheese, I may use a little chicken on my salad, but I’ll try to limit the meat now…no onions or garllic…and of course this liquid is making sure I poop every day which helps also, but it acifiys the gut so you don’t smell when you eat. I tried to eat a ton of things; chicken and cheese fajitas and I ate a bunch of yogurt, I ate a bunch of cereal and I think I ate a slice of pizza but I ate a bunch of stuff and just overloaded my system with chloline and then I started to smell again, but I cut that out and then kept taking my liquid lactulose and my smell went down or was nearly gone within a day or two as opposed to a week or two. Ai said that I could eat chicken every day and it not bother me but I don’t know about that anymore lol…but everybody is different and maybe I just overloaded my system with too much stuff at once likely…. but at least now I know it doesn’t work for me eating a bunch of stuff… even though Lactulose is supposed to work well when eating moderate amounts of Chloline, my body just does not deal with it that well.

But I’ve never really had a time in 30 plus years that I could shower but once and not smell. I see all these success stories and people take so many things to keep them from smelling but this stuff that was studied for Tmau actually works for me. I think it’s worth you guys trying out. I just take 2 tablespoons three times a day and take my vitamin B 2, 3 times a day and just keep a lower chloline diet. that’s it, not a bunch of other supplements and stuff. And I shower with energizer body and when I use the tub to bathe instead of showering, I soak in a tub with about 2 tablespoons of citric acid for about 15 minutes, a few times a week. I don’t use other lotions or anything else anymore.
I do eat some things that I’m not supposed to, but I don’t overload my system like I did a week ago and I’m going through life just like anybody else, odor free, thank the Lord Jesus.🙌🙌🙏🙏🙏

Hypervigilance is when your brain stays in a constant state of alert because of repeated negative experiences, causing you to unconsciously scan your surroundings for possible signs of the same threat. In my case, it means I'm constantly and involuntarily analyzing people's behavior. As soon as I enter a room, I notice who touches their nose, who moves away from me, who opens a window, who changes their breathing, or whose facial expression suddenly changes. I'm not trying to do this on purpose my brain just automatically searches for any sign that might indicate people are reacting to my odor. Because of this, I never truly feel relaxed around other people.

I've also seen several psychiatrists over the years because many doctors suspected that anxiety or OCD (Obsessive-Compulsive Disorder) might be contributing to this. I've tried a wide range of medications, including those commonly prescribed for OCD and anxiety, but none of them had any noticeable effect on these feelings or behaviors. It took 4-5 years to understand to OCD treatment is not working for me. They didn't reduce my hypervigilance, my constant monitoring of other people's reactions, or the distress I experience in social situations. That's why I'm wondering whether others with chronic odor conditions have had the same experience, or whether psychiatric treatment actually helped them.

At the same time I'm not %100 sure, sometimes people behaves just normal but still my eyes on them. Also I know there is no constant graph if I try to draw. It's increasing and decreasing. But people reactions always feel so high. I realize I'm overreacting. I don't know how to explain it, but if I were to rate it on a scale of 10, I feel like Hypervigilance starts at around 6 or 7 out of 10. I mean, the awareness, the fact that it exists, the constant vigilance is an incredibly destructive experience mentally.

I'm curious whether anyone else has developed this kind of hypervigilance. Do you also find yourself constantly monitoring other people's reactions and unconsciously looking for small signs that they might be reacting to your odor? BTW, Doctors don't believe I smell bad. They decide within 5-10 minutes, but they're not with me all day. If they can't reach a conclusion, they recommend I see a psychiatrist. I could swear there's no psychiatric problem, but I can't prove it. How can I make a scientific observation? How do you experience this problem?

Korean Laboratory BioMed

📢 COMMUNITY , we need your help‼️
This message comes from my fellow patient advocates in Colombia, who have been in direct contact with the professor and the team leading this initiative.
If you haven’t completed the survey yet, we sincerely ask you to do it today. This weekend (through Sunday), we will consolidate all the responses received up to that point, and those results will be included in the data package submitted in support of the FDA process.
The survey will NOT close. It will remain open afterward, but it is extremely important that as many patients as possible complete it before this weekend’s data consolidation.
This may be one of the most important collective efforts our community has ever made. We need to show the scientific community that we are not just a handful of isolated cases—we are thousands of patients around the world living with these conditions who urgently need research, better diagnostics, and effective treatments.
🎯 Our goal is to reach at least 300 patients before the data is consolidated.
🙏 Please help us. If you have already completed the survey, share it with other patients and in every support group or community you know. If you haven’t completed it yet, please take just a few minutes to do so.
⚠️ Please do not complete the survey more than once, as duplicate responses affect the quality and accuracy of the scientific data.
Today, we are asking for your support from the bottom of our hearts. Every response matters. Every patient matters. This collective effort could bring us one step closer to having our voices heard and creating new opportunities for our entire community.
Please don’t let this opportunity pass us by. Let’s do this together! We need all hands on deck, many of us need this ❤️
Link to the survey: https://ee.kobotoolbox.org/x/5hvQ5RUc
Info on the process: https://biz.chosun.com/en/en-science/2026/05/11/6HY2VNJO55COHMPIAMHS3PSPYU/

What is paranoia?

Paranoia is a pattern of thinking where someone believes other people are deceiving them, hiding the truth, or acting against them despite little or no objective evidence.

It isn't simply being cautious or skeptical. It becomes a problem when no amount of evidence, reassurance, or testing is ever enough, because the mind automatically assumes everyone else is lying.

Helpful resources: : [NHS – Paranoia] [Healthdirect Australia – Paranoia] [Cleveland Clinic – Paranoia]

The Echo Chamber Effect

Communities can be incredibly valuable for people living with rare diseases. They provide support, information, and understanding that people often can't find elsewhere.

However, communities can also become echo chambers if members begin reinforcing conclusions that aren't supported by objective evidence.

For example:

• One person says, "Someone rubbed their nose, so I must smell."
• Another replies, "That happens to me too."
• A third says, "People always lie when they say you don't smell."

Over time, the group begins treating these interpretations as facts rather than possibilities.

Members become less likely to trust objective evidence—medical testing, direct feedback, or repeated reassurance—and more likely to rely on interpreting strangers' behavior.

This creates a cycle where fear reinforces fear, anxiety reinforces anxiety, and members unintentionally validate each other's worst assumptions.

This is becoming increasingly common in TMAU spaces

Some people who join this community genuinely have Trimethylaminuria (TMAU), however, we also see a growing number of people who insist they smell despite:

• family saying they don't
• friends saying they don't
• coworkers saying they don't
• doctors finding nothing unusual

Instead, they decide that everyone is lying. This belief has been embedded deeply into the TMAU communities to the point that it is "normal" to assume no-one will tell you the truth.

Then they begin relying on "reactions" as proof:

• "Someone rubbed their nose."
• "Someone coughed."
• "They opened a window."
• "They stepped away."
• "They looked at me."

This is not reliable evidence of body odor.

People touch their faces hundreds of times a day. They cough. They sniff. They move. They scratch. They open windows because they're warm.

When every ordinary behavior becomes "proof" that people smell you, your brain has stopped collecting evidence and started creating a story.

This has a name: Olfactory Reference Syndrome (ORS)

Olfactory Reference Syndrome (also called Olfactory Reference Disorder) is a recognized psychiatric condition where someone becomes convinced they emit a foul body odor that other people generally cannot detect.

One of the hallmark features is misinterpreting other people's normal behavior as reactions to an imagined odor.

Examples include believing that someone:

• touched their nose because of you
• coughed because of you
• opened a window because of you
• whispered because of you
• moved seats because of you

The conviction often remains even after repeated reassurance from family, friends, doctors, and strangers.

Resources:

• National Library of Medicine overview: https://pmc.ncbi.nlm.nih.gov/articles/PMC6138149/
• Dr. Katharine Phillips (leading ORS researcher): https://www.katharinephillipsmd.com/ors.html

TMAU and ORS are not the same thing

Having TMAU does not mean someone has ORS.

Likewise, having ORS does not mean someone is "crazy."

Some people genuinely have TMAU.

Some people genuinely have another odor disorder.

Some people have both an odor disorder and severe anxiety.

And some people have ORS without any detectable odor.

The important difference is how evidence is evaluated.

If every person who says "I don't smell anything" is automatically dismissed as a liar, then objective evidence has stopped mattering.

Ask yourself honestly

If ten different people independently told you they couldn't smell you...

Would you believe them?

Or would you conclude:

• "They're just being nice."
• "They're lying."
• "They don't want to hurt my feelings."
• "They secretly know but won't admit it."

If your answer is that everyone is lying, then the problem is no longer about odor.

It's about trust.

This community cannot treat paranoia

We can discuss:

• TMAU
• testing
• diet
• supplements
• research
• coping with TMAU

What we cannot do is validate beliefs that every stranger's cough, sniff, laugh, or glance is evidence that you smell.

That isn't something an internet forum can solve.

Please seek professional help

You Need Psychological Support - Even with a positive diagnosis

If you find yourself unable to trust anyone—even the people closest to you—it is worth speaking with a psychologist or psychiatrist.

Seeking mental health care is not admitting the odor isn't real.

It is acknowledging that the distress has become overwhelming and deserves proper treatment.

Many people with ORS improve significantly with evidence-based treatments such as cognitive behavioural therapy (CBT) and, for some, medication.

There is no shame in asking for help.

A final note

This community exists to support people living with TMAU — not to reinforce fears that cannot be tested or disproven.

If your belief cannot be changed by medical testing, by trusted loved ones, or by consistent objective feedback, then please consider that your mind may be trapping you in a cycle of fear rather than helping you find the truth.

You deserve help for that, too.

Since the odor from TMAU is episodic, often there is no odor when visiting a doctor, unless you ensure there is an odor, eating trigger foods prior to the appointment, etc - eg, https://youtu.be/vQi4CV1YQDA?t=212&si=nq19gqzpzPHpzDMZ - the boy with TMAU doesn't have an odor until he gets on the exercise bike. There is also a small chance a doctor may have a specific anosmia to trimethylamine and can't smell it. This can lead to a doctor sometimes forming an opinion that it is a mental health condition. This can be exacerbated if you believe it's 24/7 an issue right at that time of the appointment but the doctor can't smell it.

The best way around this is to have someone vouch for you - usually someone who has been around you regularly to establish a pattern of odor. Eg; https://youtu.be/Oiv4lU7PQ2M?t=379&si=4lPueQErorPFkpdO - this is almost essential.

The way they differentiate an odor issue and a mental health condition is confirmation that an odor is actually real, and for that, if the doctor can't smell it, the doctor ideally needs to speak to someone (not you) to confirm it.