with ages ranging from 26 to 47, and coming from places as far away as London and Ireland.Me and another guy from London took Friday off work and got the afternoon Megabus up but this was a mega journey also, nearly 5 hours! We arrived in Manchester with sore bums and in mega need of liquid refreshment. We had a delicious Thai meal and I could hear karaoke music upstairs. However, I resisted doing my Top Gun rendition of ‘Take my breath away’
Being a Friday night, we hit the pub and a few pints later we crashed out in the Gardens Hotel (which we had booked for the weekend); it was aptly named because it overlooked the Piccadilly Gardens in the city centre.
Somewhat wasted and bleary-eyed, I half woke up in the morning to a familiar tune. It was my mobile (I’d overslept!) and the first of the Group members had already arrived at the train station 100 yards away and wanted to know the directions to the hotel!
I dashed for the shower still carrying my mobile whilst simultaneously soaping my back (not wise!). Having scorched myself with boiling water I flung some clothes together and greeted the first guest who was by now sitting in the hotel foyer!
She was a beautiful blonde woman I had met once previously in London. I remember thinking that if she had never told me she has this problem then I would never have known. I have not been able to smell any of our UK members so far although I have no problem in detecting odours, thus suggesting many of us may have similar odours present.
We made our way to a Costa coffee shop on the opposite side of the square and made ourselves comfy in some soft leather sofas. Within a short while, several of the arriving members texted me on my mobile and I directed them there.
I guess the coffee shop is where we broke the ice. One of our Mancunian members (Mancunians means people who come from Manchester) is really extrovert and could talk for England!
I sat back and listened to her strange accent trying to focus on her words rather than the way she said them. That’s right, people from different parts of England talk with different accents and dialects just as people do in different parts of America!
Well, she was the first one who told me of the strange phenomenon of her breath odour being emitted as waves of intense odour that exude from her for perhaps 20-30 minutes then disappear as quickly as they had arrived. She talked about how she had confided in her work colleagues and a few of them had given her feedback about the odour, when it comes and goes, how strong it is and what it smells like.
She was the first one who told me about how her odour varies during her menstrual cycle, smelling like sour milk a week before her period, then a period smell then finally becoming faecal as she started menstruating.
The blonde lady had primary trimethylaminuria and told us all how she got greatest relief by following a low choline diet and taking probiotics and chlorophyll. These measures had reduced her odour around 80% as detected by herself and others.
There was one lady present who had tongue coating as bad as mine, and we discussed novel ways of reducing the coating. One lady swore her tongue became pink and healthy looking after taking apple cider vinegar and chewable vitamin C tablets. Another said the apple-cider vinegar made her smell different and worse.
We also chatted about foods that made our odour worse (eating lamb affects my odour terribly). I told members how I spray my clothes but not my body with sprays since direct spraying to the body makes the odour worse.
The other member from London who came up with me in the Megabus told me how his breath/body odour sometimes smells like phosphorous matches being lit and has a huge stress component, I have heard of this stress link to odour from a small number of members.
After coffee, we made our way to a restaurant and bar arcade called the Printworks and had a Chinese buffet. The guy from Ireland arrived and I remember feeling impressed that he had made such an effort and was even staying in the same hotel as us.
In the evening we had some drinks in a Weatherspoon pub near the hotel then went to the Trafford Centre which has one of the biggest shopping malls in the UK. We played 10 pin bowling and I impressed the gang with my 4 Strikes and, for good measure, even bowled the bar staff over with my breath!
We managed to miss the last bus back and had to catch a taxi. We sat in the Irish guy’s room and knocked back a bottle of sparkling wine mixed with vodka and I told them about how I started these meet ups some years back and what fun we have.
One of the points I gleaned from this meet up was how members expressed a sense of overwhelming relief in being able to finally talk openly about their problem and experiences with others who truly understand. I hope others here will also find the courage to reach out to a few members they like.
The other point I gleaned was that even amongst odour conditions that lacked an organic cause, there appeared to be a sub-variety of different odour related conditions, each having symptoms (based on location, smell, frequency, triggers etc) that were distinct from others. We concluded that these various symptoms need to be documented together in one place, as well as the factors such as diet, stress, menstruation, medication etc that cause the odours to vary.
This task is being done by the blonde lady. She is conducting the survey in conjunction with a metabolic specialist here in London. The aim will be to allow scientists and medics to know more about these conditions so they can be properly researched. Without this survey, we will not know the full extent of our problem.
Arun
) - just a bunch of regular people with a common goal. Sure, its not the answer you want to give to a 'what did you do for the weekend' question on a Monday morning, but theres no need to advertise!