I am 24 year old male from the UK who has developed trimethylaminuria (TMAU). TMAU is a condition where the liver enzyme called Fm03 fails to oxidize the smelly chemical compound trimethylamine (TMA), resulting in a smell of rotting fish, fecal material, and rotting eggs combined that leaves the body via breath and bodily fluids. I learned recently that I am heterozygous for this condition and although the research suggest only those who are homozygous develop symptoms, I believe that my poor diet and lifestyle that included heavy alcohol use, recreational drugs, a variety of prescription drugs, including potent antibiotics, long term antacids and a brief stint with anabolic steroids, combined to trigger this disease process. TMAU is rare disorder and there are no clear treatments. I am writing this in the hopes that someone can help me to put my life back together.
Early History: Setting the Foundation Ill-health
My diet for young lad was not great. I ate a lot of processed foods. I don’t believe I had any childhood illnesses, but I got my doctors medical records and I believe I was on and off antibiotics as a young infant. I have a hiatal hernia but that came later on around 19 years of age. My lifestyle wasn’t great either. Growing up I smoked a lot of weed daily, and on the weekends I would drink. I thought I was healthy though. I had a good life growing up no worries in the world, played high level sports, and had some good friends.
Things slowly started changing for me when I was 17 or 18 years of age. I noticed my stomach was in bad pain 24/7 especially in the morning, and would throw up and be sick after eating. I got acid reflux pretty bad as well. I saw my doctor, and of course, they did no investigating. They just shoved me on acid reducing drugs (proton pump inhibitors –PPIs). I took PPIs for two years approximately, and they did wonders for my reflux, so I thought they were pretty good. I clearly failed to realize the importance of stomach acid in the body.
I developed chronic constipation. I wouldn’t have bowel movements for at least a week at a time. I had inflamed hemorrhoids that seemed to prolapse. I got major brain fog, and after eating, I would become extremely tired and would bloat. I also developed bad breath, and after exercise or anytime I would need to use my muscles for lifting heavy objects at work, I would get painful radiating aches all in my joints, especially elbow and shoulders. I knew things weren’t right but I was so uneducated about everything that I didn’t even realize any importance of gut health. Becoming sick was the only reason I stumbled across this unknown world.
The Decline
When I was 19 years old, I had an infected tooth. I ended up having a root canal and the tooth extracted. I took strong antibiotics at that point. I don’t remember which ones. Before it healed though, I went on a lads’ holiday and drank heavily. Thinking back, I can’t believe how stupid I was.
I also took strong antibiotic several times for reasons I cannot remember, including metronidazole (Flagyl) and amoxicillin. Sometime between the ages of 18-20, I also had inflamed ball/tonsil on one side of my throat and ended up having that removed for reasons I cannot remember. Just looking back at everything, it is clear that I put my body under major stress.
Fast forward a year, I split up with my girlfriend of three years. This was a very stressful time. I took it upon myself to take some steroids as my close mate at the time was doing it and seeing results in the gym. So stupidly, I organized and put it upon myself to experiment. I thought I had nothing to lose as I was already feeling sorry for myself. The anabolic steroid I was taking was Anavar. I was 22 at this point and I took the steroids for only a month, but looking back, this may have been the last straw. While I was taking them, I carried on my normal activities of drinking on the weekends with these steroids still in my system.
By taking these steroids, my breath odor got worse by tenfold. People two meters away from me would cover their noses when I spoke. I was shocked and baffled on how this could actually happen. It was humiliating. By this time my hair started falling out and thinning. It still happens to this day. I finally did some research, and boom. I found that if one is predisposed to the male pattern baldness and take steroids, the baldness gene is activated early. The conversion of testosterone to the hormone DHT, attacks your hair follicles. At age 22, I had bad breath, severe stomach issues and was going bald.
After I found the steroid hair loss connection, I spent the next few months vigorously searching for answers. I scoured the internet, and fell into a depression. I overwhelmed myself into trying to figure out what was going on inside my body. The stress of this was crippling as I wanted to avoid everybody. Things got even worse as my breath odor slowly transformed into body odor as well, especially after sweating.
Intense Body Odor: A Clear Sign of TMAU
I first noticed after a long 90 minute football match, people were avoiding me, and holding their breath when they walked past me. I could not understand why. I’ve not long come out the shower, surely it can’t be me? Can it? My head became a complete mess. I thought I was going crazy. Fast forward a few months, and my friends asked me to go to a music festival. I reluctantly accepted as I had been cooped up in my bedroom for too long. I was very stressed over my socially debilitating situation, so desperately purchased some Chlorella supplements from Holland and Barrett, as I found a small print on the internet that they freshen you from the insides.
During this festival I ended up taking around 12 tablets of chlorella whilst I was there, hoping for some sort of reduction of symptoms. Since being at a festival, I drank and took some narcotics. A few hours passed and then I suddenly realized people around me was “reacting” to me. I started to part crowds like the river Nile. As the horrible cold feeling of me becoming a human sewage tank dawned over my whole body. I couldn’t smell a single bad thing off me, but the way everyone was holding their noses and pointing at me confirmed the nightmare is actually happening and I’m living it. The ONLY positive thing about this awful situation is the fact it confirmed for me that all this isn’t in my head and it’s actually happening. I wanted the ground to swallow me up I couldn’t take the humiliation and degrading feeling anymore. I ended up running two miles out the festival and locked myself in my hotel room in a flood of confusion and tears.
I noticed that I was making people cough, and clear their throats and also made peoples noses run. So whatever my body was emitting was obviously an irritant to everyone else. Whilst I lay there in my bed trying to get my head around this disturbing nightmare I’m living in, people in the next room were coughing profusely and shouting what is that smell. So whatever I was emitting was penetrating through walls and causing people to have allergic reactions.
Finding the Strength to Discover a Cause
By the time I made it home, I had completely hit rock bottom. I became a hermit, I never wanted to leave the house, I had no one to speak to, and no doctor wanted to listen. Suicidal thoughts raced through my mind every day and the thought of death felt pleasant, as I would not have to continue living this nightmare. I somehow found the determination to dive my head into overwhelming research. My eyes wouldn’t leave my laptop screen throughout the day. It became an obsession, and I would wake up and go to bed with my head dived into the internet. All this information got way too much for me to handle and started to take a step back.
I ended up obtaining certain tests to help paint a picture of what the hell is going on. I spent a bit of money on these tests what I will list here.
- Organic acid test (Oat)
- GI map test
- 23andme genetic test
- SIBO
- Candida test
- Heavy metal test
I noticed on the GI map tests, it shows gut dysbiosis. I had low good bacteria and high bad or opportunistic bacteria. I also had H Pylori, leaky gut and low IgA levels. The heavy metals showed high arsenic levels and the OAT test showed that everything was out of balance.
The Source of the Foul Smell: Trimethylaminuria or TMAU
With research, I discovered the condition called trimethylaminuria -TMAU. TMAU is a condition where the liver enzyme called Fm03 fails to oxidize the smelly chemical compound trimethylamine (TMA), resulting in a smell of rotting fish/fecal and rotting eggs and more to leave the body via breath and bodily fluids. TMA is produced in the gut. I always thought I could not have this condition because you are born with it, and I most definitely didn’t think I was born with this. So this is where the genetic test came into play. I looked at what genetic variants are associated with TMAU, and I found that I had the genetic variants, but they were highlighted in yellow, meaning I only have them from one parent.
Genetic TMAU 1 is diagnosed by receiving both faulty genes from both parents. I am thinking that maybe I have an underactive enzyme, that works at maybe 50 percent, but that is overridden by the excess TMA in my gut and which it cannot keep up. Also, I would like to refer back to the steroid period. As I stumbled across a research article on doctors injecting mice with the hormone DHT and it was said that it reduced the FM03 enzyme by 90 percent, and it seems very coincidental this condition peaked while taking steroids.
Where I am Now
A year has passed since the festival, and my life has never been the same since. The only emotions I have felt are sadness, anxiety and hopelessness. Everyone treats me like a piece of trash, the constant comments I hear behind my back, and having to stand there in a group of people noticing them silently taking the piss out of me takes its toll. I can no longer go and exercise or play football with a group of people because of this condition and I used to play semi-professional. The days I muster up the strength to go to work as a plumber if end up sweating, I get reactions and comments making me feel like I don’t deserve to even be there.
Everything in this life what I used to take for granted, and also what around 80 percent of the population do, are the small things: socially meeting up with your friends, speaking to people face to face without having crippling social anxiety, going out for meals, bonds of friendships and relationships what have now been destroyed with TMAU. This condition has taken everything away from me. It has taken my dignity, my confidence, my motivation, my happiness, my self-esteem, my football what lived for, and now it is destroying any strong bonds I had.
My mum has been diagnosed with cancer, and this hit me hard, and she is the main reason why I am writing this post. I cannot bare for her to look at me anymore wasting my life in sadness. I believe I may have been a catalyst in her cancer, diagnosis as I definitely put her under a lot of stress over the years due to this sudden onset of this condition; and she is the reason I have motivation to try and tackle this, and seek any sort of help. It is my last ditch attempt at trying to beat TMAU. I will not let her live the rest of her remaining precious years watching me in the gutter. I need her to see me back to my old self and back on my feet. I need for her to see me succeed.
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Hiya pal just want to say youvelitterally described my life in this post I noticed peoples reaction to the smell while I was at high school I would get bullied because of it even off the teachers I remember one day they was reading the register and they added smelly into my name and I had to say here as everyone was looking at me pure embarrassment.towards the end of my school days i started smoking weed turning up late for school then getting put into detention after school. After school probably around 18 I started hanging about with sesh heads wed take e’s wich somehow bonded us all together even though I herd all the snide comments thinking I didnt know , they’d always ring me to come get pilled up. About12 months later we were getting on it around 5 or 6 days a week taking stupid amounts of pills this get to the point I could take 8 es one after the other and go straight to the comedown so I decided to stop taking them, at this point nothing felt real asif i was living in a dream we all moved on to cocaine for me it was a coping method over time i was taking it all day at work then at night I’d go out only getting afew hours sleep, as time went on I lost everything my friends, money, car and credit score then nearly my life if you could call it that. My point being going from the good kid in school to the drug using person I was was all caused by this smell. I’m now 27 I have stopped all the drugs got a job working for dpd wich at first was okay, I would have to be around anyone for more than 20 seconds a day, sounds great. This soon became like mental torture. I arrive at the depot to be greated by f*ucking hell hes shit himself again, is that him, he stinks , dirty ba*stard. Most of the day people seem to be okay then around 3pm I start getting the looks the changes in tone of voice after I deliver the parcels the comments. I originally thought I was cursed, I cant just stop working but I cant keep doing this i feel like I’m loosing my sanity I’ve spent years researching what it could be on and off, trying different diets wich didnt work so rather than try to stop it I decided to see what makes it worse and use peoples reactions for my research, I’ve found any sort of sugary processed junk food, energy drinks, eggs, meat, nuts, alcohol, milk pastry, anything high in saturated fat, whey protein shakes, high caffine pre workout powders all make it worse.then about 3 months ago I noticed people saying it stinks of fish I’d just had fish and chips for my dinner, this is my breakthrough peice of information that’s lead me to trimethylaminura I’d always see fish odour syndrome and think nope cant be that and move onto the next dead end trail after I started my research I to trimethylaminura I discovered it can come as other smells such as garbage sewage and ammonia, I was over the moon I thought I’ve finally figured it out I rang my doctor for the 2nd time about the smell to inform them about the discovery and ask for a trimethylamine test they didnt even know what it is so I explained it to them she said she will send me for the test but 1st has to refer me to a consultant as gps canteens you for the test. She said I’ve sent an email they should get back to me withington 2 days and I will call you back. 1 week later still nothing over this week I’ve done as much research as possible to find out theres pretty much no cure other than diet but all you can really eat is some fruit not all and rice is this really going to be my life the smelly delivery driver that can only eat rice and berry’s and everyone thinks I sh*t my pants every day I’m praying there will one day be a cure but the way doctors and other people are treating me I really do think I will live to see it.
I have been readin lots of post here and yes I have been suffering with TMAU for 16 year an nothing have work please any one help me please this is a nightmare…. Any suggestions on to what I need to help me
May 2022, I just came across this post. As was said in the post, a heterozygote does not develop the disease and remains a carrier. Therefor there has to be another factor and I believe that it is lack of cellular energy. The fatigue is typical of ATP deficiency. Thus, an epigenetic approach using megadose thiamine may help
hey thankyou for your response, im back researching, and i beleive the use of the anabolic steroids triiggered this, i have taken hormonal test and i it says i have very high progesterone , a female hormone, and i beleive its creating excess eostrogen what has impacted my fm03 activity , like it does for females during their menstral cycle, i have taken a tmau test which came back negative , but im suspicous they did not follow through correctly with the test. but yes i belive its a hormonal issue driving my issue, i am greatful for your response, is there any chance i can come visit or take any tests, i will pay , i am desperate to get a little releif, as my condtion was never this bad, only after i took the steroids
Actually a heterozygote carrier of the condition can show transient or temporary symptoms of TMAU as they have reduced enzyme activity or an enzyme not working at 100% someone who is a heterozygote carrier of the defective gene can handle the daily burden of TMA but get symptoms if they have an overload(usually from bacterial overgrowth in the bowel breaking down choline and generating excess TMA)Thus giving heterozygotes the characteristic odour of TMAU
I’m also a heterozygote carrier and have experienced the exact same story as you in my early 20″s before realising I had this condition but I’m completely cured of this odour following a low choline diet and probiotics….and especially from food like kefir hope this helps I know how bad it is to suffer with this condition
Hey mate you absolutely nailed the first comment explaining about being a carrier , please can you contact me , fb/ email ?
Yes I would like to talk to you too our stories are literally identical do you want to send me your email address? adam-lynch1993@hotmail.com
I left my email there Tom of you want to contact me there and make contact on WhatsApp I can share how I cured this secondary TMAU mate
hey mate, ive only just seen your comment, ive emailed you mate now , yes looking forward to speaking to you
Hi I’m going through this now did you take any other supplements or just probiotics.
Just low choline diet and probiotics from Kefir google Kefir for TMAU
What probiotics do you take please.
is this still working for you – the netazor R
Hi my dear friend,
I saw your post and wanted to reply with tangible things you can do that I decree and declare shall help you.
1) Claim power over your body and mind – our minds are SO powerful and if we suffered immense trauma or pain our subconscious steps in and manifests things/symptoms/ailments to ‘save us’ – if at the time of trauma and pain we were focussing on our body/health/food then digestive issues, IBS, organ malfunction are what our higher selves use – case of TMAU it’s either a) a liver enzyme malfunction b) gut flora imbalance – bad bacteria outweigh good bacteria.
2) Recall a specific trauma where a group or individual hurt you in a public setting or any event where you wanted to rather stay at home or be alone or so to speak ‘want the ground to swallow you up’ or want to be invisible or hidden from judgement. Feel that pain and tell yourself, ‘thank you body/digestive system/organs for doing what you thought was best to save me by giving me a reason to keep people away from me, for giving me a reason to avoid people and stay indoors in safety, I appreciate you for this, now I no longer need these physical ailments nor digestive issues because it is safe for me to process these emotions and let go of the fear of being with people, being around people, right now from this moment forward and backwards in all times and spaces I let go of the fear of rejection and the fear of judgement, the fear of people seeing and getting close to the real me, I release any and all physical illness and ailments, you have served your purpose, now I am safe, I feel safe and life is safe.’ – the event triggered your TMAU to get you to release these limiting beliefs.
3) When you wake up repeat each one of these affirmations in your head or out loud each 33 times: I can feel safe around people, it is safe for me to release control, it is safe for me to be close and near and to trust people, I am always protected and supported, being judged is normal (our enemies are our greatest teachers) – currently I am also writing these out, joint handwriting filling an A5 paper use colours, get a new fresh book, make it a fun experience.
4) Do an acid based enema – buy a colonic kit on Amazon, fill it with about 30ml of lemon juice and rest warm water (aim is to be able to hold a 2000ml solution internally for 10mins then release – use cooled down boiled water or filtered). Give yourself a day or two to rebalance the acid by eating light, reduce coffee, drink water and replacing your gut with good probiotics and get back to normal bowel movements – the substance that gives off the odour in TMAU is alkaline and sits in the colon so acid balances it.
5) I have a few others techniques and supplements which help but it would be good to know if someone actually reads this so if anyone wants more info reply and I’d love help more
Sending love and light and good health xxx
WOW thank you!!! I appreciate your post and information. I too am victim to this disease. Your affirmation was powerful and appreciated. It makes 100% sense I had crippling anxiety even in primary school and was soo nervous and stressed to be around people. I am doing the colon irragtion with bicarb soda and salt, never thought to use lemon thank you , thank you!!! I will try this.. bless you kind soul ?
Hey thankyou for your reply ! I was on anti acids for a long time , and I’m guessing that reduced my stomach acid , and also h pylori does , creating an alkaline body. I feel like there’s to much to cope with atm im waiting to save up enough money so I can get a professional to watch over me and guide me along the process,
I seemed to get overwhelmed with work and my beautiful mother has recently just passed so I’m finding hard to structure any sort of routine , I need to wake up out of the fog that I’m in. Work keeps me ticking over at the minute , it’s my life … it gives me a purpose and pride … ive had good days and bad days , restricting my diet really helps, but like I say I’m needing a good routine to follow . And this may be what I’m looking for , thankyou again .
Hi Tom,
I can relate as I’ve suffered the exact same too.
I notice you say you had bad constipation for a while. I see some people who have odour issues have an internal rectal prolapse. This is when chronic straining caused by constipation makes the walls of the rectum flaccid.
I was diagnosed this. Maybe look into it to. The test would be a Proctogram AKA daefography. I had it done privately in the UK for £450. You’ll need a doctors referral.
I’m waiting to have surgery. I’ve read that some people’s odour problem has been cured by the surgery to remove the prolapse and am hopeful it will sort me too.
Look into it Tom as there’s a chance it could help.
Hi – thanks for posting – could you please give more details:
Please confirm that you have been formally diagnosed with “internal rectal prolapse” via a Proctogram test by a medical professional? Which type of medical professional provided you with this diagnosis and where is this person based?
Now you are getting surgery they will “remove (the) prolapse”? Please give more details
If you look into it there have indeed been some so-called malodour sufferers that have commented on rectoceles, prolapses, even “internal sphincter reflexes” (undocumented btw) etc. However, apart from a rectocele issue experienced by a woman in Singapore, there are no other success stories that I can see: if you have the data please share.
Otherwise, I recall an Argentine gentleman, fellow malodour sufferer, that, in his own admission, forced a rectocele diagnosis from a doctor and managed to get a rectopexy. Though he says that “transit” was improved, there was zero impact on odour (which must be gutting after being cut up on the op table).
Look at the end of the day I am not going to put brakes on you – I’m writing a reply mainly to get more information from you regarding your diagnosis and your claim that prolapse operations have helped people: you definitely need to provide more details.
I went through the whole posterior muscles/sphincter/pelvic floor route and ended up been diagnosed with Pudendal Nerve Entrapment – thought I had finally cracked it! went for the operation in France – whole thing cost me 7 grand as I was living and working in South East Asia at the time – also could not exercise for about a year post-op + no more riding bicycles. Turns out the odour has nothing to do with the pelvic floor/sphincter/posterior muscles as it “returned/resurfaced” shortly after the operation. What were dealing with here is a metabolic issue that is related to genes and/or microbiome – such as tmau.
In the meantime, don’t waste all your resources on expensive surgeries unless you’ve properly researched it and watch out for all the snake oil salesmen (and the legit doctors that just want to make more money).
Good luck! And please get back to me with the details
Hi,
Yes I was formally diagnosed with an internal rectal prolapse, AKA internal intussuseption. I was also diagnosed with a ‘rather flaccid rectal wall’. Mine is grade 4, still internal, and the maximum grade is grade 5, which means it exits the anus. The test was a proctogram performed by a radiologist at a hospital and the results interpreted by a colorectal surgeon, all in the UK.
There are two main options for the test. One involves inputting a mesh to keep the bowel in the correct position. I dont want to do this due to high complication rates. The other is a transanal operation with would either a) suture the flaccid tissue against the rectal walls which would stop tissue prolapsing down as its pinned to the wall or b) cut away the excess tissue which also would stop prolapsing at the tissue is removed.
I saw the web page about the woman from singapore and that said rectal prolapse rather than rectocele. Im not surprised the operation didnt work for the man in argentina as he forced a diagnosis. I had no idea what a prolapse was until I was diagnosed.
I have no numeric data but have heard anecdotal evidence:
-the singapore woman we both read
-on rareconnect tmau blog, there is a checklist of common things people think is tmau and a bowel prolapse is there
-two people from this bo_success_cases which is a google doc you can source online.
Im not trying to convince anyone rectal prolapse is definitely the problem and surgery is the cure. I only suggested looking into it. Ive only heard the anecdotal evidence above. , Ive tested negative for candida, h plyori and leaky gut. I have sent off a tmau sample but have not got the result. I am not confident i can trust the result anyway. It may be tmau, though i hope it isnt.
The National Health Service in the UK would cover this operation as it has a significant effect on my everyday life. My consultant also does not pressure me to spend money on tests. In fact the opposite, he has told me not to bother with certain tests as they are expensive.
Thanks please get back to me
What are your symptoms and diagnosis?
Hi – thanks for replying – really appreciate you taking the time to do so.
Please keep me posted on how you get on: very interest to see the results – in any event, I think you will benefit from those milder operations and any improvement is a great victory.
Totally understand where you’re coming from with this whole posterior muscles issue: in my case, the odour problems exhibited at the same time as incomplete evacuation and bloating discomfort hence the whole quest re pelvic floor, rectocele etc..
Odour type: fecal/rotten eggs (sometimes burnt rubber/wood) that I myself cannot the odours (and this is one of the key points here in my opinion) but apparently they smell like a sewage/gas leak or the inside of a baby’s diaper.
Two types of scenarios re odour in my case:
1) Straight after a bowel movement: seemingly via sphincter/gut (most common) – therefore makes complete sense to investigate prolapses, rectoceles and co.
2) After eating a significant amount of those culprit dietary precursors: via sweat (uncommon/rare)
Re diagnosis:
Did all the defaecography etc. tests and was diagnosed with Pudendal Nerve Entrapment – see above reply for more deets. That was a bloody waste of resources…
Currently waiting for a renewed tmau test – like you, I hope it is not but am doing it nonetheless purely for statistical reasons (NHS concerned staff need to understand that these malodour conditions are a more common than they think…) The urine test is hard to get right and the dna could give you more light on the genetic aspects but nothing on the microbiome(s): tbh not too much confidence as the tests do not seem very accurate/reliable.
Reasons why I don’t think prolapses and rectoceles and co are the cause of the odour:
*If we had rectoceles, rectal prolapses etc. we would be able to smell the seemingly horrible smell that people complain about (perhaps you are aware and can smell the (your) odour?). The fact that we cannot smell the volatiles is consistent with tmau and other malodour conditions.
*Prolapses and rectoceles and other similar conditions are quite common and horrible offensive fecal/rotten egg odours are not described as symptoms.
*Testimony from the Argentine chap re his rectopexy and the impact or lack thereof on odour – aware that we do not have much to go on here and wish there were more info on this.
Look here – I hope this will work for you – keep positive and keep us posted as there could be something in this.
Best of Luck!
Courage!
Respectfully yours,
Mat
Apologies btw: realised that I rushed the reply and there are a few errors/words missed out…
Apologies btw: realised that I rushed the reply and there are a few errors/words missed out…
Also wanted to add: in my case, the complaints about the fecal odour made me strain like a mad man and caused severe constant burning pressure in the rectum and perineum areas (the timeline is important as exposes the causality) – perhaps the odour and the constipation generated Pudendal Nerve Entrapement rather than being the cause it is in fact a consequence.
Re prolapses and others: check out magnetic field therapy – did that for a year and made very significant improvements strengthening the posterior muscles/sphincter areas.
So much more to say as usual… I’ll make sure to organise a London meet up for us all to really talk in detail (when things calm down re corona virus).
Sorry to add to the chat – wanted to write that I firmly believe what you are doing is worthwhile as it may be that the prolapse has a part to play in all of this – really hope it works out – please keep me posted and if possible send me the details of your radiologist – wouldn’t hurt to get a second opinion – first chap was a bit of a cowboy
Hi Mat,
Thanks so much for the information and your kind support.
As an update, Today my TMAU urine test came back negative. As you said I dont place much faith in this result as the urine test seems to be unreliable. I enquired what my ratio was (0.21 being the tmau diagnosis cut off) and I asked if I can have a genetic test. No reply yet.
The fact that the odour is worse for you after a bowel movement and when you feel evacuation has been incomplete suggests a problem more to do with the rectum/sphincter than an all over body metabolic condition. Im not saying it definitely is, but Ive not heard of TMAU smells varying with bowel movements.
Regarding why you dont think lower digestive tract issues would make a fecal body odour-
-I dont think that someone being able to smell the odour means it cant be a prolapse/similar. People cant smell the odour because they are so used to it. I rarely, but do, get the odd whiff but for 99% time i cant smell it even if i try. Why would people be able to smell the odour from a gastrointestinal issue but not a metabolic one?
-good point about people having prolapses but not this issue. I think internal prolapse is rarer than you think. I read 2.5/100,000, which would mean around 1650 in the UK. Then, not all of those may be severe. Mine is grade 4, with max being grade 5. Maybe your ‘cowboy’ radiologist missed a high grade prolapse. Other factors may join it such as food intolerance or genetics. Maybe prolapse is a necessary but insufficient factor that leads to the smell.
I too strained in the same way for the same reason and the specialist said straining worsened the prolapse. I assume you are jn the same boat.
I cant imagine odour causing something else. Odour is more of a resultant symptom than a causal link in the chain. However, the constipation certainly could have contributed to the nerve entrapment and definitely the prolapse.
Ive not heard much about magnetic therapy but have been doing pelvic floor exercises. Maybe they are similar.
Best of luck i wish you all the best in curing yours
Hi – I hope you’re well.
Malodour conditions have this characteristic of the sufferer often not being able to smell his own chemical release. This has been a reality in my case for the past 16 years: lots of samples to analyse there.
Unsure about getting used to own smells but not categorical – basic self-performed tests: I’m still very often revolted by the smell of my own faeces/flatus – my nose senses work perfectly well and I have indeed smelled these malodour type releases by a few people during my 33 years – rare occasions however (interesting as I observed and analysed the various scenarios and see a pattern that I recognise).
Then again, some non-sufferers cannot smell it and others in varying degrees: obviously still a lot to learn and understand (sometimes I feel I know a lot by now but still have trouble making sense of some aspect of it).
Not trying to argue on this but prolapses are not rare: rectal, pelvic and other prolapses are more common than we would think.
The stats you show come out of Finland in 2005 and regard “complete rectal prolapse” and therefore do not include all the Grade 4/other grades prolapses.
In the US, the entire rectal prolapse umbrella (all the Grades inc complete prolapses) affect 4.2 / 1’000 people which is uncommon but not rare. And for pelvic organ prolapse, it is thought to affect nearly half of the over 50 population.
In any event, we can agree on the fact that some of us have posterior issues that could have a significant part to play in the condition. I really feel like the anecdote from the Singaporean woman could have something in it and we have already established that we do not know enough on this and it is precisely for that reason that this is very worthwhile investigating.
Also could you please forward the details of the radiologist / clinic you used for the proctogram. If you don’t want to post it on the chat I’ll give you my email – please let me know.
Thanks and best regards,
Hi Mat,
The 2.5/100,000 figure I got came from this site (i took out the https:// so hormones matter doesnt think its spam.
fascrs.org/patients/diseases-and-conditions/a-z/rectal-prolapse-expanded-version
Where did you get the finnish data from?
I suppose not all pelvic organ prolapses are relevant in body odour cases, though rectal prolapses are.
Agreed, i feel i know a lot but still missing out on basic info like why can i detect smells during a bowel movement but not the same smell day to day
The clinic was a private hospital in the north of england near manchester called Spire. I asked my gp for a referral to be treated there privately
Best wishes
Thanks for getting back to me – I’ll investigate more on this myself (shall go via London-based institutions) and get back to you.
In the meantime, let us know how you get on: what you decide re surgery options and any other things you feel are noteworthy.
Best wishes to you too my comrade in arms.
Respectfully,
Mat
Ill definitely keep you updated! I am expecting to find out if I will need surgery at the end kf this year/ early next year.
Thank you and best wishes sir , good luck
The finnish data seems to be used by a lot of websites as it is selected by the google algorithm as the answer to questions regarding the rarity of prolapses.
Doesn’t really matter tbh..
It’s not a rectal prolapse I believe it’s hemeroids, and inflamed bowels…. My situation regarding this has improved … it only seems to flair up when I eat the wrong foods…. Odour still there due to me weakening my fm03 enzyme … and working my liver and kidneys with the weed smoking …. I’m currently trying to kick the habit , it’s a must to improve this condition …. Digestive issue will improve with homemade kefir / or water kefir I like to drink …. Just need to be more disclipned , waiting to save up some more money to pay someone to look over my case with me and see if they can help monitor any Deficineces or areas that will help improve my situation .
Hello, my name is Maribel. I am 21 years old and started realizing symptoms when I turned 15. I had always noticed people would point out that there was an unpleasant order around my menstrual cycle. But then one day it became permanent, all the time people would start saying it around me. I rather just have an unpleasant odor around my period than all the time. I don’t know what to do, I can’t fly out to see doctors who specialize with that disease. I’m severely depressed I just want my life back. I isolate myself because I don’t want to be humiliated. I went on a vegan diet but I don’t know if it helps or not. I think about giving up so many times. I just want it to go away. I think about it all the time especially when I’m in social events. People don’t want to be rude sometimes which is sweet but some peoples always get runny around me and start sneezing. I literally eat nothing but rice, oatmeal, spaghetti, plantains, yucca, and the rest is a vegan diet. I try to keep it as plain as possible. Last night I had alcohol and I’m scared of the results I might get today. I just want to be confident and happy again. I know suicide isn’t an option cause of my religion so I just fake laugh all the time but I’m just miserable. My boyfriend says he can’t smell anything but I don’t believe him. But then why would I get odd reactions if that was true. Any help? Any advice? I only take magnesium two weeks before I’m about to menstruate. I just want it to go away, I want to be able to eat my normal foods.
The same for me my wife smell anything.
What country do you live in?
Look up the gut war on YouTube
Hi Tom, I know exactly what you’re going through and it’s like being stuck in a nightmare. It’s hard to comprehend when you’ve never had this problem growing up, and also when you cannot detect it on yourself. I too took flagyl on the advice of a doctor as I had h.pylori. Worst thing I ever did!! This is when my TMAU started at the age of 35. I’ve been dealing with it for 10 years. I’ve started buying kefir and drinking 500ml per day. On the advice of a dietician, I am to follow a low choline diet for 3 months. I have a banana smoothie with 1 cup of oat milk and 1 tablespoon of flaxseed meal for fibre intake. 100 grams of chicken or turkey at lunch and dinner, with veggies….but no cruciferous veggies. Up to 3 tablespoons of olive oil or grape seed oil on a salad. 1.5 litres of water. Palm size amount of red meat or fish one a week. You will reduce the odour through looking after your gut health. Colonic irrigation’s are meant to help also…which I will be doing also. Walks and Meditation….need to de stress. Stress is a huge factor. Wishing you all the best…we will beat it and be healthier people for it. See it as a positive that our bodies are telling us to look after our health. 🙂
TMA is produced from gut bacteria. Choline and carnitine are metabolized into TMA by certain bacteria. TMA is a stinky gaseous compound that smells like rotten fish. TMA is converted to TMAO in the liver by FMO3 enzymes by most people which rids the smell. A very small percentage of the population can’t make this enzyme due to genetics leading to fishy odor syndrome.
One way to avoid TMA production is to reduce or eliminate choline and carnitine from the diet to reduce the production of TMA. Choline is very high in eggs, dairy, and meat. Carnitine is rich in red meat. I would recommend going towards a plant based diet as that will shift the bacteria population and eliminate the precursors for TMA production.
Dr. Stan Hazen from the Cleveland Clinic has done a lot of cutting research in this area of interest and I recommend looking into his research studies.
Hi Tom I am 26 yrs old female, and I’m only just realizing now after years of suffering, that I suffer from the same thing, the symptoms were better for the last four months this year when my diet was majorly free from meat, fish, egg e.t.c, and only recently just started acting up again after I started consuming lots of eggs, meat and fish, which is apparently not good for sufferers. I read somewhere that activated carbon helps, and I’m going to try it. I hope it works out. maybe we can be friends, I hope we can be.
Same here Astrid and Tom. I’ve noticed it for the past two years and go through phases of it getting better and worse. I’ve been told diet is the issue but I have built my life around animal protein intake and can’t imagine going full vegetarian. Other than activated charcoal (which i haven’t tried) any others worth trying? I take a probiotic as well.
Hey Tom, am David from Kenya E.Africa. I have suffered the same. On Saturday it was worse. It is the worst thing to happen to anyone. Bold people asks me why i fear taking a shower. The problem is the disease is unknown. Even doctor’s don’t understand it. I try avoiding sugary foods, spicy foods, gluten, fish, beans, peas, wheat products, red meat, dairy products etc. I also eat food which do not stay long in the stomach( a lot of vegetables and fruits). When invited to a party or sense people reacting negatively i take Netazox R 500. You won’t smell even if you eat everything. Believing God for a miraculous healing. Peace be with you Tom.
@Karen Brennan
Thanks very much for the recommendation, after getting in contact with the mater just waiting for a referral.
Hello Tom,
I am so sorry to hear that you have had to endure this crippling condition. I too was diagnosed with TMAU type 2 at the age of 26. I like you was suffering with my mental health due to the condition and luckily came across an article on tmau and found a professor in Ireland named Dr. Treacy who specialised in tmau at the mater hospital in Dublin.
I am now 34 and while I am not completely free of the symptoms of TMAU I can function again and it is no longer front and centre in my life and I seem to only have an episode from drinking alcohol and sweating from dancing if I attend a wedding etc.
After all I know now after much research I like you seem to have had some gut bacteria imbalance. I have intolerances to dairy, gluten and wheat and suffered constipation for many years due to these undiagnosed allergies. I think that eating this type of food often lead to issues with my gut flora that allowed the condition to occur.
I have seen great success with using liquid probiotics, I use symprove. I have also seen great results with drinking kombucha and taking keifir, both natural probiotic in nature.
There are also supplements you can take like chorella for detoxification, activated charcoal, copper chlorophyllin and a high dose of riboflavin.
This is an excellent website for tmau sufferers and has the most up to date treatment protocols for tmau:
https://www.meboresearch.org/trimethylaminuria.html.
Look up your local metabolic disorders centre in your local hospital and see if you can get your urine tested for TMAU. If they have a tmau team within the metabolic disorders team you will be able to access a dietician and counselling to treat the condition.
Don’t give up hope Tom, your mum will definitely live to see you smile again. You will beat this and you will get your life back but it will be an even better one than before, as suffering of this kind leads to such great happiness and gratitude that a lot of people will never experience in their lifetime. “Difficult roads often lead to beautiful destinations”. Best of luck Tom.
Hi Karen,
It was so reassuring to read your comment. I believe I also have tmau2. Were there certain foods that made you smell worse? And did you start smelling immediately after consuming the food? Did you go through any sort of treatment when you were diagnosed?
I’m completely in the same boat with literally everything! Except your condition is sounds chronic. I wish you nothing but the best. ❤️
Your earlier years have got a lot 0f responsibility. You actually ruined your metabolism. I am more and more convinced that energy failure is the bottom line.I suggest big doses of Lipothiamine say anything between 200 and 6oomg a day and read about paradox on this website. We are talking about epigenetic treatment and you need to read up on that.
Hi Dr Lonsdale, considering I have the same TMAU issue as Tom, I’m wondering how long do you suggest to take the Lipothiamine for at such large doses? Do you suggest to take any other supplements with it?
Thiamine and magnesium feature heavily on this site – unless there is a medical reason you shouldn’t, it might be worth trying supplementing the forms of thiamine Dr Lonsdale talks about, magnesium taurate, and zinc. Taurine is supposed to help the liver, so that could be worth looking into.
Worth noting, thiamine seems to increase my natural body odour overnight, not immediately as your condition seems to cause.
A pinch of sodium bicarbonate under the arms stops any odour totally. Only a pinch though, or you’ll get sore skin.
Check here:
https://www.facebook.com/DrRuksanaShamnazClinicForAdvancedHomeopathy/photos/no-shame-on-body-odor-homeopathy-will-help-you-to-get-rid-of-wwwadvancedhomeocom/337139739806523/
I heard just yesterday,that bad body odors can be caused by a shortage of zinc. Seems simplistic to say, but how are your zinc levels? Dr. Berg was the one who posted the video about it. Good Luck