hey everyone, I've had bad breath since 2011 and now I am graduating college. Life was good until I got braces and almost immediately my life changed overnight. No one in my family could smell it, including me. I remember the morning after returning to class, just opening my mouth and saying one word, my classmates and teacher were horrified. I will admit I never took care to floss everyday or brush thoroughly before braces but I still brushed twice a day like any normal person. Like most of you, I got bullied because of this when I entered middle school. Nothing physical, just small rude acts by various people each day. Almost everyone in my grade knew and some of the older grades did as well. It was a very dark time in my life. I became really anxious and depressed. I mainly survived by distracting myself with books and school work. I had one or two friends that were kind even though they could smell me. When I got to high school, the bullying stopped and I'm grateful to the few people I met even though we didn't have that much in common. One interesting thing to note is that when I got braces, my face broke out with huge cystic acne pimples. I suspect my body was having a reaction to the braces and/or I was going through puberty and all the hormonal/immune responses overwhelmed my body which resulted in this unfortunate situation.
However, I also suspect that I may have been born with it or acquired it before the braces as well. When I was in third grade, a girl commented on my breath once to me. Additionally, I have always felt uncomfortable being face to face with someone. Maybe my body was aware of something I wasn't like intuition? I know that's a stretch. My mom and my grandma also get occasional (rare) bad breath, so maybe it's genetic? In kindergarten, I remember always having to clear my throat in the mornings. When I was around this age, I also used to wake up with brown-stained drool on my pillow. Once, I woke up with a black tongue. I don't recall taking pepto bismol the night before, so I think I may have been bleeding somewhere and my oral hygiene wasn't adequate enough (we may be more predisposed/prone to bad breath than others), resulting in an overgrowth of bacteria. I also used to pick my nose a lot as a kid until I got nose bleeds. It was always "hard to breathe" like my nose wasn't as clear/open as I wanted it to be. Maybe my hands were dirty and introduced bacteria into my nose?
Another thing...After third grade, I went on vacation outside of the US for the first time. I stayed for three months and during this time I ate all sorts of crazy things like snails and clams. I also got really sick and took a weird cough medicine and some ear drops by a home health doctor. When I returned, it was very strange. Maybe I was jet lagged, became more aware of the way I was perceived in the world, or did not know anybody in class for the first time but I became much more reserved and only spoke to one other classmate. Otherwise, I pretty much did not speak for that entire year. This was unlike me as the year before you couldn't get me to shut up lol. Although my disposition is normally quiet, I thought I should mention this story. I don't know if it has anything to do with my current situation. Going back to the intuition thing, maybe my body was going through something and it made me too tired to be interested in talking to anyone? My breath didn't smell yet this year but what if keeping my mouth shut for this entire year and then getting braces the next had something to do with it?
Only now I am starting to think I have PATM too. After getting braces, one girl told me I had BO and in middle school, a guy said I smelled musty (indirectly ofc). Also, I used to sit next to this poor girl in middle school everyday in first period. Her eyes and nose were always running so much and it was only after the teacher changed to this new seating arrangement. It was so bad and obvious who the smell was coming from. I don't actually know if she could smell me or if she was just having a reaction to me. I thought my problem would end when I got my braces removed but no (may have been reduced but only slightly). Even when sitting arms length from people in high school, it only took a while for them to smell me, without ever even opening my mouth. I still don't know if the smell was/is coming out of my nose FROM my mouth and/or from my skin.
But this PATM wasn't always the case. I only started noticing consistent reactions around the time I started college. That's when people would really sneeze and have to clear their throats around me. It also doesn't take much for someone to react. I only have to have passed by an area briefly for someone to sneeze. It's like the smell lingers wherever I was. The air around me feels dense and heavy so when I walk in front of someone or pass them, they can smell it. I also react to myself sometimes, esp. in the mornings. I would get a runny nose and sneeze a lot in high school. Now it is less often but still. I've heard it has a burning smell and a fecal smell. I thought it may also be coming from my scalp because I get really oily hair and when I aggressively whip my head backwards, I catch a whiff of something oily. But even after showering with Head and Shoulders (and just recently an antifungal), people still react. To what exactly, I don't know. Some people don't smell me but they still get watery eyes and a runny nose. When my family has guests come over, they also have reactions (mind you I do not need to leave my room for this to happen). It is a small house and so I suspect the smell is worse after I shower or use the bathroom. The smell floats out so I try to turn the fan on or open the window after. My sister and I share a bathroom and she says she doesn't smell anything after me but I know guests can. I have since switched to a pH balanced body wash and the reactions are better. I used to use Bath and Body Works before work and the reactions were significant. Throughout the day, I will also use wet wipes that are pH balanced to wipe my skin. I have only recently started this so I don't know if it works yet. My family has either gone nose blind or they really don't smell it. But more recently, I noticed everyone in my family sneezes to me as well.
Tests/Procedures I've Done
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So after removing my braces, I went to an ENT doctor who was super understanding and nice. We had an EGD, nasopharyngoscopy, and a tonsilectomy done (for tonsil stones). Unfortunately, everything was normal and it didn't really improve my situation. I also got my wisdom teeth removed before getting braces, which is unrelated, but I'm mentioning it because I got a really weird metallic-tasting discharge from the tooth site every so often. It wasn't infected or anything as I went back to see the surgeons and had them check it.
After years of giving up on researching, I found out about TMAU and decided to see a geneticist to test for it even though I don't think I smell fishy. It was a blood test and the results were negative. I could have done a urine test as well to make sure, but after finally thinking I found a diagnosis, I was discouraged. A year later, I went to see a GI doc who was also really nice and understanding. He was the one who suggested it may also be coming from my skin. We did a barium swallow study and blood test to check for inflammation to celiac, etc. Nothing.
I also had a CMP/CBC, H. pylori stool test, and tried reflux meds for a few weeks to no avail. The anti reflux meds did not help my breath but I noticed after stopping them, I had to clear my throat a lot. The blood tests showed my liver, kidney, and pancreas was all normal. But it showed my RBC and RDW levels were elevated and my MCV, MCH, and MCHC were low. I think this is a type of anemia where my iron saturation in low. I suspect this is due to my diet (I will get to this later).
Because I still get cystic acne every so often, I went to check my hormone levels and my DHEAS levels were elevated. This could be a number of things, including stress. I thought it meant PCOS, since PCOS can cause bad breath but my doctor said you would have to have irregular periods to be diagnosed. I still think cystic acne is my body trying to tell me something because I don't see anyone else in their 20s with bad skin. Anyone else?
Where I'm at Now
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Currently, I am still following a low choline, plant-based diet. I tried going vegan with no meat for a while but I didn't see any changes so now I only eat white chicken. No red meats still. I avoid dairy as much as possible but I'm not super strict when it's found in other products like chips for example. I know I should be more strict with it but I allow myself to have a little because I don't even know what I can and can't eat. I don't know what's working because I can't smell myself, only going off reactions I get. It's very frustrating not having a diagnosis, as I'm sure all of you know. I think if we had a diagnosis, people would be more understanding and we wouldn't have to hide in shame. I mean why would this be different from any other medical condition? I wish there was a way to raise awareness for it. I was even thinking of getting a tattoo with the rare ribbon disease so when people ask, I can tell them point blank.
I used to get a sour taste in my mouth, esp when licking my back molars, when I had braces. But now, there's no bad taste and my mouth isn't even dry anymore (only sometimes). Makes it kinda hard to tell when I do smell or not. But I learned to never trust the way my mouth feels because it always smells. Always. Also, when I brush my teeth, I notice I have really thick, stretchy saliva. It's rare when I don't. When I don't, I assume I have been eating right.
Sometimes, I wipe my neck with the back of my hand and can smell a mousy, musty smell. Sometimes, when I eat a fatty meal, my stool is yellowish like my body can't absorb fat. I am skinny fat and have always had trouble gaining weight. I noticed girls who are skinny like me are also more prone to bad breath. Is this true? My stomach is bloated a lot so I have recently tried going gluten free.
I started taking a probiotic, multivitamin, and evening primrose oil (balances hormones for cystic acne) daily. Still no improvements but I still try. I use a netti pot once a week and floss every day. I occasionally use a saline nasal spray and a humidifier because my nose gets dry.
I really have no other answers. After years of lurking on here, I finally decided to join you all and accept my situation. I hope you can do the same as well. I know there are people at MEBO and Dr. Irene who are aware of this, but we can't wait for them to save us. Who knows how long that will be or how long we will have this condition? The best we can do is share ideas and take care of ourselves mentally and by eating right. Meditate, journal, shift your perspective. I recently joined discord to connect with others. There's a community of PATM suffers (I wonder is there one for TMAU?) and though they aren't super active, it is good to reach out to someone. I live in Alabama if anyone my age wants to meet up
stay positive everyone.
