Date:   11/3/2005 2:43:35 PM ( 19 y ago)
Hits:   6,836
URL:   https://www.curezone.org/forums/fm.asp?i=560245

Hi guys, I would like to report an interesting find arising from our last UK meetup last Saturday, here in London. We had a new member attending, a young lady who complained of strong fish odor. The reason that she knows she smells of fish (like me, she can't smell herself) is that she has asked other people traveling in the same train as her!!! Talk about bold!! Some people find me bold (going on BBC WorldService etc) but I guess I am nowhere near as bold as this girl! Fortunately, there was a medical student sitting in the same carraige as her on the train and she told her that her strong fish smell may indicate that she has trimethylaminuria. So, when searching the internet, she found out about our UK meetups and that's how we met.

I am sure you will all have heard that our UK meetups are growing in size. In the summer we had 10 members present in the meetup with academics from the University of London. We now have around 20 UK members. I guess you will have also heard me mention that most of us are COMPLETELY unable to smell each other despite the range of odors present (sweaty odors, drain-pipe odors etc). Well, actually, 2 out of us 10 of us could but that is still a small percentage. Don't misunderstand me here guys...we can smell all odors perfectly apart from ours! We don't generally have a problem smelling odors!!!

Now here's the big surprise that will also bowl you over.......ready?.......none of us could detect her fish odor!! .....This is despite the fact that we could strongly smell fish being cooked in seafood restaurants that we walked past!! We even got this girl to strongly exhale in our face and we were able to detect no odor WHATSOEVER!!! Incidentally she has both breath and Body Odor but, like me, was only aware of others reacting to her breath odor all this time but now she feels sure she has both. I also only thought I had breath odor until comparatively recently but now know that I have both.

So what does all this mean? Is she imagining her problem? Absolutely not! She told us that people have sometimes got out of the same train carraige as her at a stop and got into the next one!! Well, my interpretation of all this is that fish odor syndrome has some similar metabolism in common with fecal/drain-pipe odors and even sweaty odors. Okay, the more scinical among you are going to say that that is surely jumping to conclusions? How could not being able to smell someone mean that you have a similar problem to them?

Hmmmm.....let me answer that with an equally interesting discovery I made 3-4 years back. Ready?......This other girl from Northern Europe used to email me about her strong fish odor. Her fish odor was so strong that when she sat in art classes in college, the air conditioning used to extract her odor and expell it in another classroom some fifty feet away! Now I know you think she must be paranoid or obsesssed to think such a thing but I can assure you this can happen. Infact it has happened with me when I attended University studying my Pharmacy degree!! Anyway, this Northern European girl had this incredibly strong fish odor for 5-10 years then WHAM!! ......it suddenly became fecal!!! ....and stayed fecal (at this point she became a bit suicidal but I think she is still alive although I lost contact with her after that).

Okay, let me clarify that my drainpipe/fecal/ food odors are not due to trimethylaminuria (I have been very reliably tested for this, and yes I know all about false negatives). I am also not saying that these 2 girls have the same problem as me. I am merely saying that I believe there is some similar abnormal metabolism in drainpipe odor and fish odor syndrome and even in strong sweat odors. Do any of you have bizarre experiences that suggest similar metabolism like I have mentioned?

Oh by the way guys, I am in the process of arranging the first INTERNATIONAL Group meetup for breath/ Body Odor sufferers and this will take place in London in summer 2006. There will be professors in metabolic medecine, perhaps a clinician, and researchers too. The date is still being discussed but once finalized it will not be changed as the American contingent (many are coming) will already have purchased their plane and hotel tickets. All members are welcome. I think it will be a great event and I expect numbers to be between 20-30.

We need to think about what to do with our free time. I will be taking a couple of weeks off and hope to hire a bus so that we can visit some interesting places like Shakespeare's birth place, the Lake district, the Peak district and the Scottish Highlands. We will have barbecues and some long country walks too. Does anybody have any other suggestions of what we might do? The aim is for you guys to mingle with each other.
Arun
 

<< Return to the standard message view

fetched in 0.03 sec, referred by http://www.curezone.org/forums/fmp.asp?i=560245