Not sure but think I have TMAU. :(

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Not sure but think I have TMAU. :(

Postby noturbo » Fri Dec 16, 2016 6:02 pm

Hi everyone, firstly I hope you're all feeling well, or as well as you can be. I'm in the process of identifying what is the cause of my terrible stench lol. I have smelled like rotten garbage/fecese for about 17 years, since the age of around 17. I'm pretty sure it didnt start this bad, and has got steadily worse. Much worse recently. For that reason during my recent research, frantically looking for answers. I assumed it was some sort of infection. Fungal or bacterial, and I felt sure when I came across Candida and H pylori. It made sense to me, and the fact its got steadily worse made me think "well yeah, it's an infection. Its getting worse symptom wise, the infection must be growing" but now im not so sure. I'm currently on the anti fungal Terbinafine for other fungal issues(fungal nail infection) and not noticed any improvement while taking it. I also take probiotics. I've plucked up the courage a few times over the years to approach d.rs but have always been dismissed and told "you really dont smell, its all in your head" which I find cruel as it just made me feel crazy. One D.r. even laughed in my face :( but the other week I admitted my problem to my only friend. He told me to ring a d.r. asap as i shouldnt have to live like that, and also confirmed that it wasnt "in my head" he made me phone while i was with him and told me if he tries to dismiss you, pass the phone to me and ill say im your key worker and can confirm your issue. I know that would have been wrong to do but it was intended to help, and it got me on the phone. Anyway the d.r seemed really nice and understanding on the phone and consequently I have an H pylori urea breath test in 3 days. I have mixed feelings at the mo. Im excited, and hopefull I get an H pylori diagnosis and can get treated. I'm also very fearfull though, that it will be negetive and then i'm pretty much left with either having TMAU or i've been cursed by a truly EVIL b@@@@@d lol. I'm pretty concerned tbh because I have attempted to take my own life 3 times since 2014 because of this. They were all spur of the moment intentional overdoses. You see, i'm a recovering addict. So in the past, when i"ve had a large supply of drugs i've decided to take the lot in one whack and be done with it. But if it happens again its more likely to be a planned event, and im fully aware of what would be a lethal dose/combination. And I know I will NOT fail next time. Its the last thing I want to do but I truly cant live like this. It hurts my soul everyday, people have been slowly killing me with their reactions/comments. I cant blame them tbh, they arent to know. To them i'm just a dirty tramp that doesnt wash and smell like i've crapped my pants or something. Uuuurgh wtf is going on? I will keep updating with any diagnosis, treatment, discovery of usefull supplement etc. Or maybe just say goodbye because I have noone else to say it too, everyone has abandonned me. Bar one friend, but even he struggles to be around me :( cross your fingers for me getting a result from my h pylori test. D.r said results may take 2 weeks though and it is christmas so prob be ages. Much love... Noturbo. :)
noturbo
 
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Re: Not sure but think I have TMAU. :(

Postby robert123 » Mon Dec 19, 2016 11:33 pm

Hi there Noturbo,
That was a really poignant post you wrote there. Thankfully I've never been quite at that stage were I attempted to take my own life but the thought has occured to me every now and then. I suppose if you really tried to take a positive spin on things if that is possible while the fact that you have only one friend is sad at least it is one more friend than an awful lot of people lving with this condition have. I'm extremely fortunate in that I have two very kind cousins who sometimes hang out with me but if it wasn't for them I'd be a complete social hermit.
I'd just like to wish you the very best of luck on your current attempts to find the cause of your problem. I'm a total non expert so feel free to dismiss anything I say but I wonder even if your test does come back positive how big a factor is h pylori in causing your odours. It's probably for the best if you cast your net as wide as possible so to speak in search of a diagnosis. If I may make a suggestion the next time you are with your doctor could you ask for a sibo test also? I agree with you that a bacterial/fungal problem lies at the root of our malodours so a sibo test could be very helpful. As you mentioned you may have to do a tmau test as well. Or just simple trial and error, like if you are lucky enough to have a very understanding doctor maybe s/he could prescibe a long course of different antibiotics for you and see how that works out.
You said that you have taken probiotics but one thing I do know is that a lot of probitics on the market are quite useless. I read in a newspaper how this very scientific study was done on most of the probiotics sold in the UK which recommended only two really. The probiotic drink symprove came top followed by vsl3. Unfortunately you get what you pay for as they're both quite expensive and will probably actually increase your odour levels at first as your body gets used to them.
I wish I could say something more insightful or inspiring but I can't, don't think I'll be applying to be a motivational speaker anytime soon haha. But I really do wish you could put those suicidal thoughts out of your head which I know is a hundred times easier said than done. I do remember reading this guy who said he once had made up his mind to kill himself. Anyway on the day he had planned it force of circumstance prevented him from doing it which he took as a sign to instead really try and turn his life around and get out of the rut he was in. What he found was it was an incredibly hard thing to do and it was a good while before he made any progress at all however once he started to have a little bit of success that quickly snowballed into a lot more success. Hopefully that's what we'll find as well in our battle with this incredibly cruel condition fingers crossed :)
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Re: Not sure but think I have TMAU. :(

Postby noturbo » Tue Dec 20, 2016 5:11 pm

robert123 wrote:Hi there Noturbo,
That was a really poignant post you wrote there. Thankfully I've never been quite at that stage were I attempted to take my own life but the thought has occured to me every now and then. I suppose if you really tried to take a positive spin on things if that is possible while the fact that you have only one friend is sad at least it is one more friend than an awful lot of people lving with this condition have. I'm extremely fortunate in that I have two very kind cousins who sometimes hang out with me but if it wasn't for them I'd be a complete social hermit.
I'd just like to wish you the very best of luck on your current attempts to find the cause of your problem. I'm a total non expert so feel free to dismiss anything I say but I wonder even if your test does come back positive how big a factor is h pylori in causing your odours. It's probably for the best if you cast your net as wide as possible so to speak in search of a diagnosis. If I may make a suggestion the next time you are with your doctor could you ask for a sibo test also? I agree with you that a bacterial/fungal problem lies at the root of our malodours so a sibo test could be very helpful. As you mentioned you may have to do a tmau test as well. Or just simple trial and error, like if you are lucky enough to have a very understanding doctor maybe s/he could prescibe a long course of different antibiotics for you and see how that works out.
You said that you have taken probiotics but one thing I do know is that a lot of probitics on the market are quite useless. I read in a newspaper how this very scientific study was done on most of the probiotics sold in the UK which recommended only two really. The probiotic drink symprove came top followed by vsl3. Unfortunately you get what you pay for as they're both quite expensive and will probably actually increase your odour levels at first as your body gets used to them.
I wish I could say something more insightful or inspiring but I can't, don't think I'll be applying to be a motivational speaker anytime soon haha. But I really do wish you could put those suicidal thoughts out of your head which I know is a hundred times easier said than done. I do remember reading this guy who said he once had made up his mind to kill himself. Anyway on the day he had planned it force of circumstance prevented him from doing it which he took as a sign to instead really try and turn his life around and get out of the rut he was in. What he found was it was an incredibly hard thing to do and it was a good while before he made any progress at all however once he started to have a little bit of success that quickly snowballed into a lot more success. Hopefully that's what we'll find as well in our battle with this incredibly cruel condition fingers crossed :)


Thankyou so much for your kind and thoughtfull response, I know it sounds stupid, but just the fact you took the time to respond to me helps me enormously :D

I'm also aware i'm lucky to have a friend. We've been through alot together, homelessness, drug addiction, prison etc. But i've told him what he means to me and that I appreciate him. If I do go down the suicide route I know he'll help me too. I literally only have one concern about taking an overdose and thats not being discovered for a long time and rotting in my flat. I'm either going to msg my mate right before I do it so he can come round and "discover" me. Or if I feel its unfair to involve him I will just rent a cheap hotel for the night, knowing i'll be discovered the next morning, i'd rather do it at home though tbh.

I've taken the H pylori test yesterday, i'm so worried its going to be negetive. I bought a home blood test kit off Amazon for a tenner. There were 5 kits. I took all 5 tests and they were all negetive :cry: But i'm not sure if I can trust the result. I mean, they cost £2 each lol. If you could get a reliable result for £2 and in 10 mins, just by pricking your finger or whatever i'm pretty sure the medical community would adopt this method, instead of expensive breath testing kits, serology labs, laboritory staff, gas cromatographs etc. etc. But it hasn't exactly boosted my confidence. As you say Robert I have also recently been considering SIBO. It would make sense too because due to the 2 decades of opiate dependance i'm ALWAYS super constipated. I know this is probably tmi but I must pass like 2 rock hard Malteser sized poo's a week, and I mean in one visit. So wheres all the poo going? Lol. Maybe i've got SIBO and leaky gut and i'm absorbing all the s###e into my blood and wreaking like rotten turds :( lol. I am going to struggle to buy supplements this week as i've got to buy my brother a christmas gift and stuff. I was wanting something called candida support. Its got lots of natural anti biotics, anti fungals etc. Also wanted Berberine, Chlorophyl, B2, more probiotics etc. I've got enough probiotics to take 20 billion till I next get paid, may buy Berberine or B2 to run with them as theyre quite cheap. Will prob also buy some vit c and take a few grams a day as its cheap and can't hurt. I'm going to try and stick to a low choline, low sugar, dairy and red meat free diet.

Basically i'll eat this everyday:

Breakfast- porridge made with almond milk and honey

Dinner- 4 egg white omlette with mushrooms or possibly some crispy streaky bacon

Teatime- 2 portions of brown rice with chicken breast and some veg

I will snack on veg/salad/fruit, I will also snack on rice cracker with humus or something, perhaps some crunchy organic peanut butter if I can tolerate it. I will also drink black tea sweatened with honey.

I will be taking my 20 billion probiotics(from holland and barrett) a day, my Terbinafine(150mg) possibly the Berberine and B2 or Chlorophyl.

I will do this for the next 2 weeks till I get my H pylori results. If its negetive I will ask for a SIBO test and a TMAU test. I will stress how important it is for me to get to the bottom of this, without letting anything slip about my plan to commit suicide if I dont get the help or find no answers, they'll lock me up lol. But this isn't a case of "clinical depression" its not a chemical imbalance in my brain that can be treated. It's an inability to cope with my symptoms, or the effect they have on my quality of life. This is a last resort obviously, I want to live, I want to find a cure... But if I cant? Then hell no, i'm not living like this no more, not a chance!
noturbo
 
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Re: Not sure but think I have TMAU. :(

Postby robert123 » Thu Dec 22, 2016 1:03 pm

Hey Noturbo,

That was so cool that you got something from my response, I'm really chuffed to hear that, thank you :).
It definitely does me good to come on here and see how fellow sufferers are coping not just in terms of any useful tips but to remind me I'm not alone.

Just reading your post there it strikes me how much you've got it together in terms of diet and what supplements to take. Like you don't eat any sugary foods at all, you must tell me your secret! I guess the one thing that might be a problem is the bacon but you seem to realise that already.

Not to go over old ground but I wonder how effective those probiotics you are taking from Holland and Barrett are? Obviously I'm no expert so i couldn't say but I do remember reading a scientist before point out that a lot of these probiotic supplements sound very impressive with the number of good bacteria they have in them but what it fails to mention is that a person's stomach acid very often kill all these bacteria off before they get a chance to do any good. I read of a diy test to check a probiotic supplement's potential, namely put a tablet of it in a glass of milk and leave it over night in a fridge, by the morning the milk should have been fermented into a yogurty type substance if the probiotic is any good. Your supplement regieme is seriously impressive though, between your diet and the supplements surely you can't be far off from the right protocol for finding a cure.

I know well what you are saying about the difference between chemical depression and the kind that you and I as well have. I mustn't be full of the joys of spring as my cousin only recently suggested to me that I may want to see a counselor or therapist as I seem quite down a lot of the time. But like you unless the counselor can somehow stop me smelling of sh*t I'm not too sure how much help that could be. Maybe I'm being a bit too dismissive as a few people on here found cbt has done them good especially in relation to their anxiety which naturally arises living with this condition. I did go on some anti depressants a while ago now, they just totally spaced me out. As somebody said to me it's kind of like the chemical equivalent of hitting your head with a hammer. I gave them up as I found hard to do much on them but if it ever gets to a point where I feel despair completely threaten to overwhelm me it probably would to worth going back on them.

Genuinely it is hard to read what your said about suicide, obviously you have really thought it through. I do hope you realize how well you are doing in search of a cure. Like seriously you are far better than me however much that means. I'm a lot more haphazard in what and how often supplements I take and unfortunately sometimes comfort eat rubbish foods which I know is totally self defeating. You obviously have really got it together in that regard. I did read some doctor say once how it probably would take at least three months for someone to get fully better with a new diet and could take as long as a year so a cure mightn't be just around the corner but it could be a lot closer than you think. I'd love to hear how your test goes if that's ok, maybe it will be one more piece of the puzzle sorted :)
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Re: Not sure but think I have TMAU. :(

Postby noturbo » Sun Jan 01, 2017 3:33 pm

Hey Robert! Yeah I do feel i'm doing all I can to combat this situation. But if anything that just makes it all the more frustrating. I'm doing everything "right" but getting worse symptoms than ever. Very depressing, I spend hundreds of pounds a month on supplements, eat a super restricted diet that avoids foods that will affect TMAU, Candida, H pylori etc. and it all seems to be doing less than nothing.

For this reason I think i'm going to try a new approach. As I think i've allready mentioned, i'm constantly researching. I'm also an avid conspiracy theorist lol. So where my research into health, and conspiracy theory interests and my interests in spirituality, all kinda strangely pointed me in this one common direction... Distilled water! My conspiracy theory videos about the depopulation agenda etc. the fluridation and clorination of the water supply to affect our immune system, our fertility, thyroid function etc. etc. I was also looking at it from a health and wellness aspect, trying to lessen my exposure to toxins because of possible TMAU. And strangely it also cropped up in my journey to become more spiritual, finding out about the Pineal gland, and how its affected by fluride and unorganic minerals causing calcification etc. I know many of you will think i'm a weirdo or whatever but I truly believe it to be no coincidence. That after years of research into all these areas, that exactly the same revelations were being made surrounding one subject in all my areas of interest. Now i've been meditating, praying, constantly asking the universe for the answers to my problems. I find it no coincidence that all this has happened, I truly see this as a sign to look into this further. Maybe this is the answer i've been asking for. In my latest research it all seems to be making sense to me. Maybe its just me being silly or whatever, but i'd be doing myself a disservice to not listen when the universe speaks. Besides, I get paid on Thu. The water distiller will cost less than what i'd usually spend on expensive, ineffective supplements. Infact i'm so excited about the prospect I cant even express it in words. And maybe its not the universe handing me a cure for a specific problem. Maybe it will just be the key to making myself otherwise mentally and physically well enough to cope with the problems I face.

I know 99% of you will think i'm a missguided, deluded weirdo but I cant ignore the way this all happened. It was truly spooky and you wouldnt believe me if i tried to tell you. I felt as if I was being shown something special, guided. And yeah, I admit, maybe it wont work. But i'm sure as hell gonna try it. I'm not, and never have been religeous, so thats not what this is. I'm not saying "god" sent me a message. But I am spiritual, I do believe in something greater than myself. But I also believe in the infinate power of man, and nature. Meh i'm rambling off topic sorry lol

Basically i'm ordering a water distiller off ebay on Thu. One with stainless steel internals and a glass collection jug. I'm going to maybe try a whole plant based diet, mainly raw and organic, with a gallon of distilled water a day. I truly hope I see some bennefits and will share with you any progress or positive results

Hope you're well Robert!
noturbo
 
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Re: Not sure but think I have TMAU. :(

Postby noturbo » Mon Jan 02, 2017 12:24 pm

I'm also trying something else that I dont really want to go into too much. Obviously if I see positive results I will share my experience but imo its pretty "out there" lol. Most people wont be able to wrap their head around it so going to avoid opening that particular can of worms lol.

I also havnt heard back from the dr about my h pylori results and its been a couple of weeks so im assuming its clear. I'll phone them tomorrow to find out for sure. Also if it is negetive I will ask for an appointment and request a test for SIBO.

I've decided to stop with all the expensive supplements etc. to concentrate on diet and clean distilled water to detox my system. I'm pretty sure the probiotics made my problems worse. I put this down to "die off" type reactions at first and thought it was a good sign I was detoxing. But if that was the case it wouldnt have lasted long but for me... Probiotics = worse smell. Body and breath unfortunately :(
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