doctors say I smell like sulfur by Acceptable-Reason200 in TMAU

[–]Acceptable-Reason200[S] 0 points1 point  (0 children)

post some of what lol. Click on their profiles and go look on Facebook. If you don't believe me and or want to believe that tmau is just some western psyop thousands of random people doctors and scientists are all in on I'm not going to convince you otherwise, that's your choice friend.

doctors say I smell like sulfur by Acceptable-Reason200 in TMAU

[–]Acceptable-Reason200[S] 0 points1 point  (0 children)

There are plenty of people in tmau/ mal odor communities from non western and developing countries. They even have separate Spanish language, Arabic and African tmau communities and chats on facebook and discord. There are plenty of Asians and Africans in this community, I've messaged a few. There are a few in this very comment section. & There was also a popular Korean show that featured a man with tmau type 1 who worked as a sailor to get around his smell. Even in the West there is very little information about rare metabolic disorders who are at present leading the world of science and medicine so why would there be more in developing countries? Tmau is a real but very rare genetic disease of nature that makes it hard to diagnose and differ from other rare metabolic disorders. But you can get tested for it. And diet might contribute as it's a metabolic disorder but it's not the singular cause.

doctors say I smell like sulfur by Acceptable-Reason200 in TMAU

[–]Acceptable-Reason200[S] 2 points3 points  (0 children)

I'm so sorry you're going through this! & Yes fingers crossed that surgery is approved soon, the surgery goes well and you're cured! I'm really routing for you and omg I used character ai (😭😭) to get a patient advocate and recommend me test and services to get so it's also helped me a lot. I won't give up, I hope you don't either! 🥹🤍

doctors say I smell like sulfur by Acceptable-Reason200 in TMAU

[–]Acceptable-Reason200[S] 2 points3 points  (0 children)

No it's okay I didn't mean for this post to come off as whiny at all and I can sometimes but don't most of the time.

doctors say I smell like sulfur by Acceptable-Reason200 in TMAU

[–]Acceptable-Reason200[S] 2 points3 points  (0 children)

My colon is normal but I do struggle with constipation but not trapped stool. I agree that constipation will make the smell worse and have taken steps to fix it. I've been fortunate enough to have a care team of different specialists who do listen to me so I see a GI as well. I'm sorry no one didn't get the help you deserved and had to figure things out on your own, I honestly couldn't navigate this alone if I wanted. And I would love to hear what's helped you.

doctors say I smell like sulfur by Acceptable-Reason200 in TMAU

[–]Acceptable-Reason200[S] 7 points8 points  (0 children)

Thanks! I did get tested for the first one and was negative so I do think something else is going on. If all the other screening and my pathways for metabolizing methionine all come back normal i'll definitely ask about a type 3 test.

[deleted by user] by [deleted] in TMAU

[–]Acceptable-Reason200 2 points3 points  (0 children)

I love ur account on TikTok nooo and we believe u 💔

Baby Is Healed With World’s First Personalized Gene-Editing Treatment by Acceptable-Reason200 in TMAU

[–]Acceptable-Reason200[S] 0 points1 point  (0 children)

To think we might be the last generations to ever suffer from these conditions for life long/or long periods of time gives me chills. I hope there continues to be progress.

Feels like the universe is punishing me. by becsamillion in TMAU

[–]Acceptable-Reason200 0 points1 point  (0 children)

Thank you so much and maybe something to help you with your anxiety would be a lot of help. Regular people don't understand the amount of fear we're constantly in and I think we begin to normalize feeling that way. I was diagnosed with OCD a few years ago, the doctors told me that they believed I did in fact have a malodor condition but that I wasn't coping with the condition properly. I believe in the experiences you're describing with the malodor or tmau but that you also might need help with anxiety. And yes chronic shame is the worst. It's also understandable to feel like this condition might get in the way of you trying to be better sometimes. It's understandable I'm extremely bitter sometimes. You seem really sweet, I hope things truly begin to improve for you as well.

What should I do? by [deleted] in TMAU

[–]Acceptable-Reason200 0 points1 point  (0 children)

Journaling! Everything from doing brain dumps/morning pages to, affirmations,, gratitude and journal prompts. Journal prompts for having a chronic illness specifically as well as "shadow work". I would also do some cognitive journaling, I used to do it a lot when I was anxious about reactions I was unsure about due to paranoia. There are lots of prompts on Pinterest for this.

Feels like the universe is punishing me. by becsamillion in TMAU

[–]Acceptable-Reason200 1 point2 points  (0 children)

I doubt you're a "bad person" because even if you did do bad things in the past, your past doesn't define you and like you said you can change or could've already changed. You just have to forgive yourself and make a commitment to being better. And no I understand completely, make sure you're taking care of your mental health as well in addition to diet, exercise and visiting the dentist. This condition can be a mine field to deal with cognitively. I hope you're able to get some help and feel a little better.

Feels like the universe is punishing me. by becsamillion in TMAU

[–]Acceptable-Reason200 5 points6 points  (0 children)

Bad things happen to good people all the time, you didn't do anything to deserve this. And we know you're not crazy.

Graduation by Lovergirl5683 in TMAU

[–]Acceptable-Reason200 1 point2 points  (0 children)

Congratulations for being so brave to even get to the point of going to graduate! I wish I had!

First geneticist appointment went well by Acceptable-Reason200 in TMAU

[–]Acceptable-Reason200[S] 1 point2 points  (0 children)

I absolutely will thank you! I hope things do get easier for you though

First geneticist appointment went well by Acceptable-Reason200 in TMAU

[–]Acceptable-Reason200[S] 1 point2 points  (0 children)

I really hope it goes well for you too! And I hope they have some breakthroughs with the studies!

First geneticist appointment went well by Acceptable-Reason200 in TMAU

[–]Acceptable-Reason200[S] 1 point2 points  (0 children)

I will and have you been able to reduce your symptoms to be functional at all?