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Hello

Postby Matt » Sun May 11, 2014 7:19 pm

Hi

I thought Id introduce myself. My name is Matt and Im from Liverpool. Ive registered on here because I think I may have TMAU. I wont give you my life story but I will mention just a few things to see if it resonates with anyone. In December 1992 I was a twenty one year old, sitting in a college class when one of my friends suddenly held his hand to his face and asked me if I had farted. I could not smell anything. It happened in the next class a day or so later with the same reaction from him and a couple of other mates who made a joke of it. But I began to panic because I could detect nothing and I had no awareness that I had broken wind. Over the next couple of weeks and then into months I began to experience this more and more and I would gradually be terrified to go into a closed environment unless I was at home. I tried medicines but nothing seemed to help. In the September of 1993 I started at University but the same thing happened and I dropped out at xmas. Over the next few years I experienced these feelings of fear and a smell of rotten eggs that I could not detect......I tried many diet exclusions and also suffered from bullimia.

At the worst my symptoms would be a foul gas which could manifest itself quite frequently in a short period of time....it seemed to be intermittent. Only on two occasions in the last twenty years have I been able to detect anything. In recent years it seems to have happened a lot less for which I am grateful and I try to adhere to the maxim of "one day at a time"....I eat certain foods and dont eat other foods which seemed to make things worse. I do not eat at all during the daytime when I am in work...i know this is wrong but it is a kind of comfort blanket for me. I also poo each and every morning....again a sort of mental thing to "cleanse" my system. Looks and whispers and stares and people telling me I smell happen to be a lot less...The worst period was pre millenium and in fact it has only been mentioned to me twice in the last three years.....on both occasions i feel certain I was responsible because i could detect nothing. So although I am not "cured", I am in a better place compared to the young man of twenty years ago. I do not know if my story has any familiarity to anyone or even if I have this official TMAU illness. I do know that I saw a bowel specialist twenty years ago and the guy just laughed in my face when I presented my problem.

Anyway....I may be in the wrong place but if nothing else I offer my support to anyone who is living with this because I can still feel the fear that I felt whenever it happened....and still may do in the future. Best wishes. Matt
Matt
 
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Re: Hello

Postby PoetFire » Mon May 12, 2014 7:12 pm

Hi Matt. Thank you for posting.

My impression is that most of us start off on this terrible experience in the way you did, i.e. by being accused of farting or worse !

Currently trimethylamine is the only malodorous compound tested for, and so is the only 'malodor' test and diagnosis available. TMA is meant to smell of a rotten fish smell

TMA is associated with FMO3 enzyme. As it happens, this enzyme oxidizes 1,000s of small sulfides and amines of a certain structure. It is my own belief that most of us may actually have 'FMO3 malodor', but none of the other compounds are tested for. But TMA should be an excellent biomarker of FMO3 function. So I think smelling of FMO3 sulfides and amines may be an explanation.

My impression is that most of us cannot smell ourselves, imho due to the brain ignoring compounds often present in the bloodstream. Also it seems to me that a sizeable % of the population have an anosmia to these smells through the bloodstream. IMHO probably 'carriers'. I would guess 'carriers' could be as high as 20%

It seems to me the older it started the more likely you should be able to remove it. To me it seems typically a combination of genetics and gut dysbiosis due to the genetics. I am very hopeful that a lot could probably be done about it, but at the moment since I don't think it's limited to TMAU then the current advice may not work.

Personally I think maybe 1% could be 'at risk' to the 'transient' form to some degree, even if only 1% of the time. But as you say, it is a terrifying worry.
PoetFire
 
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Re: Hello

Postby Suzie » Mon May 12, 2014 7:19 pm

Hi Matt,

You are absolutely in the right place. The episodes that you describe are very similar to what I experience. I have been suffering from this for 3 years now and for the first 2 years I thought I was going totally mad because people's comments and reactions about disgusting smells (mostly of horrible farts or poo) became a regular occurrence in my life, despite the fact that most of the time I couldn't smell anything myself. Even more bizarrely, the reaction can often happen at a distance and not in my vicinity which I still can't understand to this day...but that makes me think that the odour is coming from my breath and it travels, particularly when I raise my voice. Incidentally I haven't tested positive yet for TMAU but I'm sure this is because of the very transient nature of my odour - I'm convinced I have TMAU or something similar - I just don't think TMA has been in my urine at the time of sampling. I am going to continue to get tested.

I can't even imagine what it must be like living with this for 20 + years not knowing what was happening..I felt a huge sense of relief when I discovered fish odour syndrome on the Internet (only by chance because I had an episode where people commented about a smell of fish in the room). I couldn't believe that that could have been me but when I started researching more on the internet I realised that the name is very misleading and a lot of people suffer from my main odour which is fecal rather than fish...although I do have an array of other odours from burning, BO, rubbish, rotten eggs, gas, cheese, BBQ, musty..the list goes on...even marijuana..which is completely insane when it happens indoors in a non smoking venue!!

It definitely sounds like you've had a big improvement recently if it's only happened twice in the last 3 years. Have you changed anything like diet or supplements? Or do you just think it's going away? I don't eat at all at work either as food is most definitely a trigger. I can almost time it to be 30mins to an hour after eating which is really quick. But then other times it can be 3 hours or the next day?. And then sometimes nothing happens after eating. There's no concrete pattern which is so frustrating.

It has made work, social life and love life extremely miserable but I feel that I am better at dealing with it now than a year ago. I think knowing what's happening definitely helps that. Plus I've told friends and a few colleagues at work which makes it easier. However I still don't cope at all when the episodes are off the scale 'stink bomb' like - this is usually a few days at the end of my cycle and/or the first few days regardless of not eating or being really strict with my diet. Hormones definitely play a huge part.

Anyway, I've found huge strength in sharing the recent media coverage by Ellie (see recent posts for links to these) and the other 2 This Morning interviews with Karen and Claire (see the video section of this site) with friends and family. Have you told anyone about TMAU? I agree with you that the worst thing about this disorder is living in fear of it happening all the time. I still haven't managed to deal with that at all well..

Anyway it sounds like you are doing an amazing job of managing things and keeping sane especially if you are working after 20years of not knowing what's been happening. I have found this forum a huge support. If you want to chat more then we're all here..

Susya
Suzie
 
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Re: Thank you!

Postby Matt » Mon May 12, 2014 9:08 pm

Wow

Thank you so much for those kind words and both messages which have welcomed me. I will try and respond to some of the points that have been made. I do think my reactions to foods and my odor has far decreased since the millenium...that is not to say it has not happened since or I dont have relapses because I do....but the incidents seem to be far more infrequent. Now it is impossible for me to say because I can rarely detect the pungent smell but the comments and looks and incidents are far less....although in the nineties I was more sensitive to it. In fact nowadays it seems to happen incredibly rarely but I dont feel free from it. I am fighting a battle. In the mid nineties I had dropped out of uni and was utterly desperate....I had tried 1001 different medicines and started binge eating and suffering from bullimia. I quit jobs and went on the sick with depression. I was suicidal at certain stages because I felt if this is the quality of my life then what is the point? But at some stage I began to adjust......it is hard to explain......there was no Eureka moment but I came to the realisation that there was no magic cure medicine and no doctors at that stage who would take me seriously. I applied and was accepted back at a different university and in the same period I asked to go onto an anti depressant as a protective measure. I started at college with the same type of fears as when Id dropped out three years earlier....but slowly gradually things began to get better. I got into a food routine of eating stuff which seemed ok for me like fruit. In the daytime while at college I would not eat but drink lots of water...then I would have an evening meal of foods that I felt safe with such as chicken and potatoes and in the morning I would poo. Dairy products and crisps were a definite no go area for me. It was not a conscious thing but when I look back on it I was basically getting into a routine which was trying to minimise the smell....I was busy at college...I was also doing part time jobs at the same time....there were lapses...bad ones...but I did not alllow it to effect me to the level of three years earlier when the odor consumed me and my life. Then the reality was of the smell, the paranoia, and the stress which in my opinion made the odor more prominent. It was a self help thing...subconsciously me trying to take control of my life. A couple of times one of my friends asked me if I had farted. Once we were in the cinema and I was mortified.....but it did not consume me in the same way as earlier....I came home and felt I could fight back by sticking rigidly to my dietry plan. Whether it was a type of mental defence mechanism I felt it was a battle that I could win on most days. And that is the truth. I mostly have good days.....and the last time I can remember a terrible sewage smell which suddenly appeared in an office I was working was in 2010. I had been rushing up stairs and I always sensed that when in a rush or sweating it made the smell more prominent....stress caused me to sweat also.

So that is up to the present day....my life is not ideal. I temp in case I ever felt the need to make a sudden exit and when I go to new places and there is always anxiety and occassional lapses but I cope. I am sorry that I can offer nothing more concrete in terms of an end to this. For me it doesnt end but at the moment I am doing ok. I just try to deal with my mind and my body.....an acceptance that it is a daily battle against my body....and the strength of mind to accept that if something bad happens it is not the end of the world, that there is another day and that generally speaking I can live my life as normal and rationalise and deal with it if it happens again. As for telling people; I told my dad when it first happened....he has never been able to detect a thing. I told a couple of people in college because I was so desperate in the early nineties. I have also told doctors and recently....in the last few years...they have been more sympathetic to my history and on this very day I have gone to see my friendly gp and she is going to refer me for TMAU. And if it comes up positive I am going to say a silent FU to all the gp naysayers who told me it was "all in my head". And yes, I freely admit to feeling a touch bitter about that!

So thank you so much for welcoming me and I am very happy to be here. I have read some of the life histories on here and you are truly inspiring people. Bless you all.
Last edited by Matt on Fri May 16, 2014 4:54 pm, edited 1 time in total.
Matt
 
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Joined: Sun May 11, 2014 5:31 pm

Re: Hello

Postby Matt » Mon May 12, 2014 9:31 pm

ps just a quick couple of things I did not address....to Susya yeah I think my foul odor is defo less prominent than it used to be....It just doesnt happen to the level it used to so has it gone away?? No I dont think so. I am "cured" of it? NO! Is it a lot better through luck/management of it? YES! It is a world of difference. I can live a decent life and I have no doubt that you can do that to! My heart goes out to you though because I know exactly what you are experiencing.

And to poet...I thank you for that knowledge on TMAU....it was very illuminating for me and thank you for your solidarity. Maybe my body has adjusted to it through age? Not sure. Even if I test positive I am not likely to try and take an antibiotics course or radically adjust the things I am currently doing in terms of my diet...but I would finally like an official recognition of what I have!!! After 21 and a half years I feel hopeful for at least that!

Cheers guys

Matt :-)
Matt
 
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Re: Hello

Postby Ellie Girl » Tue May 13, 2014 6:44 am

Welcome Matt!

If you read through all the posts on various topics here you will find a lovely bunch of people who understand completely where you are coming from, and you will find some good advice nd ideas, too. The MEBO site is also really good re protocols for helping to manage the odour.

Best of luck and remember, you've got a strong, gentle and kind comunity behind you now. The people on this site are wonderful.

Ellie
xx
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Re: Hello

Postby Matt » Tue May 13, 2014 8:03 am

Thank you so much Ellie and it is inspiring for me to browse this forum. It has also made me quite emotional because when this first started for me the internet did not exist as we know it now and social media was non existent. I thought I was alone and a freak of nature. Your story is truly remarkable and you are the reason I have joined. I manage my condition quite effectively these days and the odors have dramatically reduced but I am not cured and it is always a day at a time. I will never cease to be amazed at the strength and courage of people like yourself. Bless you.

Matt X
Matt
 
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Re: Hello

Postby PoetFire » Tue May 13, 2014 8:18 am

Cheers Matt.

I should point out that my view of TMAU is not the 'official' one, which is that it causes a fish odor and lowering TMA levels should help. My own theory is that FMO3 malodor is a more likely cause, with TMA being one of many problem compounds (perhaps lesser so). TMAU is the only diagnosis on offer, so if you think you have a malodor through your bloodstream (i.e. metabolic) then you're in the right place.

You are right to get on with life as much as normal. I think many live a near normal life (or maybe even totally normal) and it wouldn't surprise me if many don't even know they have a problem. I'm sure many also drift in and out of smelling phases, or even just drift out completely.

I think longterm a lot will be discovered about this problem in the future. Unfortunately at the moment it hasn't reached a 'tipping point' with the public and health system to take much notice of it.

Anyhow welcome to the forum.
PoetFire
 
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Re: Hello

Postby Matt » Tue May 13, 2014 1:34 pm

Thanks poet and yes you may be right about the FM03 as the root cause. I dont really know enough about it but it seems particulary pertinent to the problem...but I cant really make a fully informed judgement. In the early pre internet days I read so many books on digestive problems...thought it might be yeast related...candida albicans...also ibs...i was on coppermint...i read and imbibed so much stuff. I also remember seeing a reference to someone smelling of fish and urine in a textbook. It caught my eye because it reported that patient said they couldnt detect it and that resonated with me....a foul smell undetected by the person doing it. But because it said fish and urine I didnt think it related to me. I also had a barium enema and countless other medicines and vitamins....I read and tried somany things and with the benefit of hindsight I honestly believe it did me more harm than good. I swear it drove me utterly demented and I was consumed by this awful illness. I try and have a decent diet and to not allow myself to be dragged into obsessing over it....and there are still times even today when that happens and I have to force myself to think of something else.

Thanks again to you and Ellie and Susya for my charming introduction to this lovely place.

Matt :-)
Matt
 
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Re: Hello

Postby Lisa » Tue May 13, 2014 3:48 pm

Hello Matt,

Think we have all been thru what you have at some point, I think, after the initial shock, we learn to deal with it, we have to.
I really don't know how I would of carried on if it wasn't for this place. (Just read my early posts, sound like a right loon) :shock:
All we can do is adjust, it's hard, but, we haven't got a terminal illness, we are not dying, we have all our faculties, so, life must go on, there are people fighting a lot worse than we are.
Yes, sometimes we despair, but, get up, and try again.
Firmly believe in one day at a time!
A saying that I love, "people that don't mind matter, people that do mind, don't matter"
On that note, I'll be off.

Take care.
:)
Lisa
 
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