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Hope
Aug 10, 2011 10:41:51 GMT
Post by snowflake on Aug 10, 2011 10:41:51 GMT
I want to know guys if you feel better since you had been diagnosed with TMAU, if you feel any hope in the future. Because I am feeling much worse since I know I am suffering from TMAU- reason- there is no cure, and nothing recommended by doctors didn´t help me at all. So I feel miserable to know I have this crap and can´t do nothing about that. I also can´t understand why it is so difficult to find some cure, I mean it´s 21st century and nobody can do nothing about this? Can´t believe. Honestly, I think it is all about business, because if they find something to get rid off smell they will have no profit from pills, soaps, gels, and other hygiene stuff that much as they have now. I don´t trust doctors and scientists at all anymore. I feel like suicide is the only cure for this shit.
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Hope
Aug 10, 2011 15:47:31 GMT
Post by bethemiracle on Aug 10, 2011 15:47:31 GMT
Hey Snowflake! I know how you're feeling so down. I had mixed feelings. I remember telling myself: Whether I have a diagnosis of TMAU or not does not change the fact that I have odor. So now that I know why I have an odor it is better than having the odor and not knowing why I have an odor (did that make sense?)..... so I look at it as a good thing to know what it is. I'm an Oprah fan and she always says, "Knowledge is Power." It's sooo true. I still have some hope that "they" or we will find some things that help. We all focus on our diet, which is what we should do because that's what we know helps sometimes....but maybe the answer lies more in boosting the FMO3 or the liver or finding a way or a supplement to break down the TMA??? Do you have TMAU 1 or TMAU 2? I have TMAU 2 but my tests show that my conversion is not good, looking like TMAU 1, but my blood test came back negative for TMAU 1. So what does that mean? Maybe my liver or FMO3 is compromised a little??? Maybe there are still some other things you can try. I think in my case maybe the B2 would be very helpful to boost my FMO3. I'm also holding out hope that maybe the probiotics will populate and push out the bad stuff. I try to stick to the diet, take B2, charcoal, keep my bowls moving with magneseum, use the low pH soaps and lotions and take probiotics. Is there something you haven't tried yet? I still have in my back pocket the antibiotics. I found a good integrative doctor. That means she's like a naturopath but also has her MD and uses ALL methods available. I have a prescription of the antibiotics in my cupboard but I'm afraid to use them right now for the fear that they might make things worse and wipe out all the good flora too...but it is still something that I could try. Also have not tried CBT yet, which I hear is very helpful....So maybe there is always something else to try that you haven't thought of or come across yet that might make things better. Something else that might make things easier for you at times (something you may not have tried yet) is to confide in some folks. I've told a very few (still working up the courage), but the few I've told have been very understanding and then it makes it easier and more relaxing to be around them because they know you can't help it and that you're doing everything you can to control it. So maybe the more people you tell and who know, the more "safe" "comfortable" environments you'll have to spend some time in. I'm still working on mustering up the courage for some friends. I've told most family and a few friends and it's really been helpful. At least I can relax with them. Something really great could come up today. There are so many folks out there experimenting and being brave, asking for input from others about their smell, and with everybody sharing their experiences on this site we just might come up with some solutions. Also, look at all the strides that have been made this past year with the fundraising for this and the experts and the tests and the professionals that have come forward to answer questions and so forth. I really feel like something good could happen. Maybe not a cure but a real advance or a great new treatment! I'm sorry you're feeling down and I totally understand. I hope this might give you some hope. Also, someone posted a good quote. I think it's under "Happy thoughts." I just plan to hang in there and keep trying everything I can. Hope this was a little bit helpful.
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Hope
Aug 11, 2011 10:34:44 GMT
Post by snowflake on Aug 11, 2011 10:34:44 GMT
Hi Bethermiracle, thanks for your reply. You are very nice person, I wish I have your courage to tell more people about my condition, but the only person who knows about this is my mom. I am not able at the moment to tell anybody else about this, because I feel miserable and I think people will not understand anyway what this is about. So I prefer to not to tell anybody else. By the way I have TMAU1-primary. Wish you all the best.
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gabby
Junior Member
Posts: 68
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Hope
Aug 12, 2011 9:52:53 GMT
Post by gabby on Aug 12, 2011 9:52:53 GMT
I feel much better after being diagnosed, it took a while but I no longer spend tons trying everything on the market for a cure. I know what needs done and do it. I also bring this up to new people I meet, not initially but shortly thereafter. I cannot smell myself, and unless I get feedback I'll keep doing exactly what I'm doing.
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Hope
Apr 28, 2012 2:04:01 GMT
Post by g on Apr 28, 2012 2:04:01 GMT
i have recently discovered i have tmau. my life has taken a big shift. i eat almost to nothing. my diet has become similar to a rabbit. carrots and water. i wake up in the morning thinking it's me that made the birds run away, the dog bark. i am taking shower more times than i am eating. can't step out of my house anymore. i too definitely think suicide is the only way out of this. but i simply don't have the heart for it.
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Hope
Apr 30, 2012 15:32:48 GMT
Post by ta1985 on Apr 30, 2012 15:32:48 GMT
Hi When i was diagnosed with TMAU, I cried for days weeks! But the one good thing i got from knowing what i had, was that finally i knew it wasnt in my head.
For years i was told that i was imagening it by family members and professionals. Its followed me through high school, college and into every job that i have had.
But i do believe that by being able to give my condition a name it has helped me find some sort of acceptance. I no longer blame myself for life not going my way.
I feel more sorry for the people who have received negative tmau results. They are still fighting to know whats wrong with them.
I understand why so many of us are struggling, i do feel let down by others on a daily basis, its hard to keep picking yourself up all the time.
It would be a good start if healthcare professionals took the condition more seriously.
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