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North American Meetup

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whatdidido
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North American Meetup

Post by whatdidido »

Hey,

So myself and StillHoping met up today for dinner, and of course, just like the last time we met, we still couldn't smell one another.

It's bizarre.

Nonetheless, it was really nice to just laugh and talk about all the ridiculous things that happen in our day to day life without fear of judgement, or offending anyone with our bb. We decided we would actively try to set up at meet up with other people. We initially thought Vegas, but LA was what we decided on, as it's super cheap for both US residents and Canadian residents to travel to.

We haven't set up a time frame, but what im hoping to do is for all those who are interested, please respond to this post, and I will set up a WhatsApp group, and hand out the link to all those interested.

I'm looking forward to meeting some cool people!

-S


crazy4it
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Re: North American Meetup

Post by crazy4it »

Count me in!!!
StillHoping
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Re: North American Meetup

Post by StillHoping »

I'm very excited for this!! Itll be nice to just hang out without being stressed out or feeling uncomfortable
2012: Wisdoms remov
2015: Tonsils+adenoids remov
2017: TMAU1 & 2 Negative
2019: Internal biopsies normal
2019: Completed SIBO treatment
2020: DigEnzymes help but side effects
+ low fodmap/GERD diet also help
winter
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Re: North American Meetup

Post by winter »

I met someone here a few times too. I don't understand why we all couldn't smell each other. I don't think we all have the same smell and same intensity.

I have smelt people with BB on the streets before.
StillHoping
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Re: North American Meetup

Post by StillHoping »

Another member (Atrial) had mentioned on our previous post that we cannot smell each other because we are producing the same odour chemical compound. The unfortunate part is that because of this we won't be able to provide feedback to each other; might explain why whenever ppl on here meet they never smell anything. But hey atleast we can meetup to support one other, relax and have a good time without being stressed or having to deal with reactions. When we hung out, that was the first time in a long time I could completely be myself and just have fun.
2012: Wisdoms remov
2015: Tonsils+adenoids remov
2017: TMAU1 & 2 Negative
2019: Internal biopsies normal
2019: Completed SIBO treatment
2020: DigEnzymes help but side effects
+ low fodmap/GERD diet also help
winter
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Re: North American Meetup

Post by winter »

StillHoping wrote: Thu Apr 18, 2019 11:03 pm Another member (Atrial) had mentioned on our previous post that we cannot smell each other because we are producing the same odour chemical compound. The unfortunate part is that because of this we won't be able to provide feedback to each other; might explain why whenever ppl on here meet they never smell anything. But hey atleast we can meetup to support one other, relax and have a good time without being stressed or having to deal with reactions. When we hung out, that was the first time in a long time I could completely be myself and just have fun.
I don't think we all have the same odour chemical compound. At least not the same amount. Some of us have nasal BB. Some just oral. Some are room fillers. Some are close up.

Ya. NA is too far for me though.
whatdidido
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Re: North American Meetup

Post by whatdidido »

winter wrote: Sun Apr 21, 2019 4:10 pm
StillHoping wrote: Thu Apr 18, 2019 11:03 pm Another member (Atrial) had mentioned on our previous post that we cannot smell each other because we are producing the same odour chemical compound. The unfortunate part is that because of this we won't be able to provide feedback to each other; might explain why whenever ppl on here meet they never smell anything. But hey atleast we can meetup to support one other, relax and have a good time without being stressed or having to deal with reactions. When we hung out, that was the first time in a long time I could completely be myself and just have fun.
I don't think we all have the same odour chemical compound. At least not the same amount. Some of us have nasal BB. Some just oral. Some are room fillers. Some are close up.

Ya. NA is too far for me though.


I think those who are dealing with SIBO (and may not know it) have similar odour compounds that are released. SIBO involves bacteria creating hydrogen sulfide (rotten egg smell) or methane, neither of which are made by our bodies. Depending on which one is predominant, the smell and severity would be different and im sure the release of bb through the mouth or the nasal is dependent on a number of things like structure.

Just today I smelled two different people who had horrible bb. When meeting StillHoping, I could not smell her breath and she couldn't smell mine-- both of us have confirmed BB. If we both are releasing these gases, then what other reason would we not be able to smell each other but still smell everyone elses bb in our everyday activity?

Theres a likelihood that we could be wrong, and I dont even know if either of us have sibo since were still waiting on tests (universal healthcare has its flaws), but the pieces seem to be fitting together.

Id say, everyone should go get tested for SIBO, at least to rule it out. Its not well known, but the test (hydrogen breath test) is readily available.
StillHoping
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Re: North American Meetup

Post by StillHoping »

Hi again everyone, so the people we have soo far have decided to set the meetup for this fall in Los Angeles, U.S.; probably September or October. This is not limited to only North Americans, if anyone is interested in attending or may happen to be visiting the States around this time and would like to attend - please message myself or whatdidido, so that we can add you to the whatsapp group.

We would like to finalize the dates soon, in order to begin planning travel/ activities etc. Hope more people are able to attend :)
2012: Wisdoms remov
2015: Tonsils+adenoids remov
2017: TMAU1 & 2 Negative
2019: Internal biopsies normal
2019: Completed SIBO treatment
2020: DigEnzymes help but side effects
+ low fodmap/GERD diet also help
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Smilingagain
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Re: North American Meetup

Post by Smilingagain »

StillHoping wrote: Thu Apr 18, 2019 11:03 pm Another member (Atrial) had mentioned on our previous post that we cannot smell each other because we are producing or having to deal with reactions. When we hung out, that was the first time in a long time I could completely be myself and just have fun.

Hey guys, I like the idea of meeting together at least once per month or .... This will help strengthen most people who are weak or probably depress sometimes, suicidal taught might creep-in to those who heed to such thinking.

Unfortunately, I live a thousand km away from these venue. I'm in Rome.

However, I strongly advice that we should not be deceived by JUST THE EXTERNAL FEELING'S.

".…..we cannot smell each other because we are producing the same odour chemical compound."

We do perceive the odour of each other because having bb does not affect your sense of perception. Sometimes, we get familiar to the odour. This could be dangerous as well.

Now, here is what I think it happening to us. Mr A & Mr B who is suffering from bb at same level might not perceive any odour during conversation with each other.

Similarly, Mr A(with chronic bb) might not perceive any odour during conversation with Mr B (with less severe bb) however, Mr B could perceive the emission of this gas during conversation with Mr A.

So, it's about the level of concentration of this gas.

OK, let me give a more practical example. I live with a friend (Mr B) who said is suffering from bb just like me(Mr A) honestly, I have never perceive any bb from his mouth during conversations except for some body odour. Now, he will covering his nose & flipping is face during such conversation with me in the early days.

His action could be offensive and can get anybody depress but, I always try to maintain calm as if,I'm having such conversation with a stranger. What is happening here is that my friend is unable to continue the discussion with me without reacting to the emission of gas that is coming from my mouth.

Regards
Smilinagain
☑ FRESHMINT => Xylitol gum keep's my breath fresh during hot summer https://bit.ly/2NFk3pN
StillHoping
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Re: North American Meetup

Post by StillHoping »

Honestly it is quite a mystery why we can't smell each other, we even tried eating really bad foods and still nothing!! I don't think I've ever seen a post where people from here met up and were able to smell something!?

Very strange..... but yes, the main thing is to get some relief from depressive thoughts and just have fun!
2012: Wisdoms remov
2015: Tonsils+adenoids remov
2017: TMAU1 & 2 Negative
2019: Internal biopsies normal
2019: Completed SIBO treatment
2020: DigEnzymes help but side effects
+ low fodmap/GERD diet also help
winter
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Re: North American Meetup

Post by winter »

Smilingagain wrote: Sat Jul 06, 2019 11:55 am
StillHoping wrote: Thu Apr 18, 2019 11:03 pm Another member (Atrial) had mentioned on our previous post that we cannot smell each other because we are producing or having to deal with reactions. When we hung out, that was the first time in a long time I could completely be myself and just have fun.

Hey guys, I like the idea of meeting together at least once per month or .... This will help strengthen most people who are weak or probably depress sometimes, suicidal taught might creep-in to those who heed to such thinking.

Unfortunately, I live a thousand km away from these venue. I'm in Rome.

However, I strongly advice that we should not be deceived by JUST THE EXTERNAL FEELING'S.

".…..we cannot smell each other because we are producing the same odour chemical compound."

We do perceive the odour of each other because having bb does not affect your sense of perception. Sometimes, we get familiar to the odour. This could be dangerous as well.

Now, here is what I think it happening to us. Mr A & Mr B who is suffering from bb at same level might not perceive any odour during conversation with each other.

Similarly, Mr A(with chronic bb) might not perceive any odour during conversation with Mr B (with less severe bb) however, Mr B could perceive the emission of this gas during conversation with Mr A.

So, it's about the level of concentration of this gas.

OK, let me give a more practical example. I live with a friend (Mr B) who said is suffering from bb just like me(Mr A) honestly, I have never perceive any bb from his mouth during conversations except for some body odour. Now, he will covering his nose & flipping is face during such conversation with me in the early days.

His action could be offensive and can get anybody depress but, I always try to maintain calm as if,I'm having such conversation with a stranger. What is happening here is that my friend is unable to continue the discussion with me without reacting to the emission of gas that is coming from my mouth.

Regards
Smilinagain
Different people also have different tolerance.

I think I can still smell some Mr Bs. Or maybe what I smelt was my own 2nd hand BB.

It is good to meet once a month for feedback. But there also doesn't seem to be many people from my area here.

The other way might be taking a long holiday to somewhere with low living cost together. And hopefully we can find some doctors or researchers who can help us.

Trying this question again, has anyone contacted the undiagnosed diseases network?
StillHoping
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Re: North American Meetup

Post by StillHoping »

Winter, where do you live?
2012: Wisdoms remov
2015: Tonsils+adenoids remov
2017: TMAU1 & 2 Negative
2019: Internal biopsies normal
2019: Completed SIBO treatment
2020: DigEnzymes help but side effects
+ low fodmap/GERD diet also help
christina
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Re: North American Meetup

Post by christina »

Count me in
winter
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Re: North American Meetup

Post by winter »

StillHoping wrote: Sat Jul 06, 2019 7:05 pm Winter, where do you live?
Asia.
StillHoping
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Re: North American Meetup

Post by StillHoping »

Hey Christina, I sent you a pm :-)
2012: Wisdoms remov
2015: Tonsils+adenoids remov
2017: TMAU1 & 2 Negative
2019: Internal biopsies normal
2019: Completed SIBO treatment
2020: DigEnzymes help but side effects
+ low fodmap/GERD diet also help
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