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.
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
- 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.
My name is Tom. And this is my story.
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