Any 1 from NY with this debilitating disorder

[life isnt what it use to be]

I suffer from hyperhidrosis and bromhidrosis for many years. It pisses me off when people try to down play what is actually going on with you. I'm sick & tired of people assuming it's all in my head and telling me they don't smell it when I smell it myself at times. I tend to sometimes have a latex/rubber smell and there has been numerous times where my sibling has come into my room and asks me if I passed gas with a disgusted look on their face, but I hadn’t. That is the one thing I can say I can't smell but it's obviously something that permeates from my skin. The last time I hung out socially was years ago I was out with my friends and periodically throughout the whole time they would state how much it smelled like feces. I noticed that it has to be something associated with my diet. As of now I noticed an onion type of smell. I am no longer experiencing that strong latex/rubber smell. I'm trying to figure out what in my diet has changed that rid me of this odor at the moment. I definitely think my situation has an underlining condition. I think I have cystic fibrosis. During my current research I found that this fits my description and could be the culprit to my hyperhidrosis (excessive sweating) and body odor. I definitely think I might have a metabolic issue. I read that with cystic fibrosis metabolic issues are very common. Basically there is a mutation within the enzymes and because of that you wouldn't be able to digest food properly. So the food that isn't able to be digested stays in your system acting as food for bad germs then it seeps into your bloodstream then out your pour causing our body odor. I’m on a mission to prove those who doubted me and I need to find the answers to the questions I long for.
Is there anybody in NYC that has this?

[lidia09]

Dec 15, 2011 6:10:26 GMT @life isnt what it use to be said:

I suffer from hyperhidrosis and bromhidrosis for many years. It pisses me off when people try to down play what is actually going on with you. I'm sick & tired of people assuming it's all in my head and telling me they don't smell it when I smell it myself at times. I tend to sometimes have a latex/rubber smell and there has been numerous times where my sibling has come into my room and asks me if I passed gas with a disgusted look on their face, but I hadn’t. That is the one thing I can say I can't smell but it's obviously something that permeates from my skin. The last time I hung out socially was years ago I was out with my friends and periodically throughout the whole time they would state how much it smelled like feces. I noticed that it has to be something associated with my diet. As of now I noticed an onion type of smell. I am no longer experiencing that strong latex/rubber smell. I'm trying to figure out what in my diet has changed that rid me of this odor at the moment. I definitely think my situation has an underlining condition. I think I have cystic fibrosis. During my current research I found that this fits my description and could be the culprit to my hyperhidrosis (excessive sweating) and body odor. I definitely think I might have a metabolic issue. I read that with cystic fibrosis metabolic issues are very common. Basically there is a mutation within the enzymes and because of that you wouldn't be able to digest food properly. So the food that isn't able to be digested stays in your system acting as food for bad germs then it seeps into your bloodstream then out your pour causing our body odor. I’m on a mission to prove those who doubted me and I need to find the answers to the questions I long for.
Is there anybody in NYC that has this?

This is my post feel free to msg me

[Carebear]

You don't say what the disorder is but it sounds like TMAU but maybe this is what you are referring to. If you don't know you can get tested for this with a urine sample but it will probably have to be sent to a centre dealing with metabolic conditions, I am not from US so can't help you out.

I have this disorder and with the low choline diet and recommended supplements am having about 2 good weeks per month but still seem to be having a hard time leading up to my period, I had the passing wind smell, burnt rubber, wet dog and slighlty sick smell judging by comments I cant always detect these odours mostly i cant but based on comments these are the odours i am producing but i am keeping a food diary to see if that will help but what is safe in my first 2 weeks isn't necessarily so in those 2 weeks prior to my period so I am guessing there is definitely a hormonal link with me. i tested postive for TMAU1 or primary TMAU with my urine sample but still have to get bloods done for confirmation that the source of my TMAU is genetic failing that i will have to accept i have TMAU2 or seconddary TMAU. I hope this helps.

[lidia09]

I have hyperhidrosis asnd bromhidrosis. I always assumed that TMAU was only a fish odor disorder but I recently notice a feces smell for the past few days. I thought it was coming from my son but after smelling him and his breath I soon found out it wasn't. I just came home from buying some tofu and other things so that I can start a no meat, sugar, and dairy diet. While in the supermarket I notice that strong feces smell that seem to follow me and omg it was so embarrassing because people were staring and whispering as I looked back. I haven't had this issue for a long time and the only thing I can think of that I had to eat this week before I notice this problem is chilli.and it consisted of black beans, onions, bell pepper, ground beef and seasonings. This is a major problem 4 me. It is so stressful I sometimes don’t know how much longer I can deal with this but I’m determined to find out what’s wrong with me.

[Carebear]

This does sound like TMAU, alot of people who have it don't necessarily have the classic fish odour syndrome in fact alot of people present with a fecal type odour ranging to burnt rubber, rubbish, dirty socks and many other very strange odours that you would think your body couldn't possibly emit. You are not alone and I understand your pain and embarrassment, I am a very clean person and when this happens to me I cant bear the thought that people probably talk about me and think I am unhygienic or worse. Though I will say that it is better since I have had my diagnosis as I know what I am dealing with and can try my best to be proactive however it was a long road to get here and I have endured many painful and embarrassing incidents and still do but perhaps less frequently although the time frame around my period is problematic. I won't lie and say that my confidence and self esteem haven't taken a major battering and that sometimes I don't feel a bit cheated but i have to hold on to the truth that I am a good person and I know I am clean even if I don't necessarily always smell like roses, I wish!
I think it would be best for you to seek medical advice before going on the diet as it is very restrictive and you still have to think about your overall health besides this. If you posted and asked for medical centres that test for this near you I am sure someone would get back to you.
I had to do a choline load before my sample so i ate red meat and baked beans and fried eggs but i am not sure how they test for it in US. Our gps - family doctors are not well informed about this disorder as it is very rare so you may need to go armed with information about this and don't be afraid if you don't necessarily get the reaction you want, my gp never heard of it and i think he thought i was mad at best but heres hoping that in time the medical community step up. Good luck with whatever you do next, keep your chin up , you are not alone. Take care. X

[aspie BO sufferer]

I'm from NYC and I suspect I have either hyperhidrosis or bromhidrosis or both. Its ruined my life, my feet and my genital area affect me the most. And with my foot odor my left foot feels way hotter than my right foot, atlough both sweat a lot. And the genital sweat the odor is on the right side.

I noticed that some days my feet smell but the genital area does not, and vice versa, and sometimes both smell.

I hate this, to make things worse I also have Aspergers, living with Aspergers & BO is complete misery, its caused excessive amounts of pain in my life.