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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO Karen
at UK Findacure conf 2020

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MEBO Map Testing & Meetups

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MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

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BO Sufferers Podcasts



TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned

Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

Tuesday, December 10, 2013

Reaching Horizon Through Wind and Water

This is my story which represents the very turbulent year I have had. In the face of serious life and death challenges, I have steadfastly reached from the depth of sheer misery to stay focused on the horizon while on course towards the MEBO Mission. It is a driving force that keeps me going; there is too much at stake - too many beautiful lives, young and old, that need freedom from living "Wistful lives..."


Through Wind and Water

by Maria de la Torre
August 2013
(A true story)

Hola mami. We’re getting ready to go out on the boat now. It’s almost 9 am, and we want to avoid the hot midday sun. How are you?”

“I’m getting dressed now to go visit your father at the hospital. I’ll talk to you later,” she replied, never doubting that we would talk later.

Walking out the door to the boat, my husband comments on how beautiful the morning is with scattered cotton clouds in the baby blue skies. There isn’t much wind, so the seas must not be too rough. We decide to go to the Gulf of Mexico side of the Florida Keys instead of the Atlantic to explore what to us would be new territory.

As my husband was snorkeling looking for lobsters, memories come back of when I met him when he was only 24 years old. I remember how he would free-dive 45 feet to the bottom of the ocean to catch the lobsters in their caves. This was 33 years ago, and now, he free-dives no more than 10 to 15 feet for lobster.

As he snorkels looking for lobsters on the ocean floor holding a rope tied to the boat with which I slowly pull him through the water, we suddenly notice the wind picking up and a very strong current is separating him from the boat. When I look up, I see at a distance between us and land a huge gray curtain of rain spreading out for miles falling from dark clouds binding together the sky and sea into a seamless continuum. As we have always done for over 30 years, we just simply drive away from the storm until it stops raining, and eventually, planned to head back to land. However, a few hours later as we head further and further away from the storm out into the Gulf, the storm only seems to grow stronger, and the seas become more rough with a strong current that would only take us further out to sea.

“We need to head back or we won’t have enough gas to get us home,” my husband tells me. “We will have to go through the storm to get to the other side of it,” he said trying to appear calm in his effort to not alarm me. Nonetheless, I could see the apprehension on his face. So, we start our way back home driving into the storm.

What happened to the blue skies and the blue waters of this beautiful blue planet, I wonder. They are gone from sight. Suddenly, the wind begins to throw waves of water into our boat that slaps us on the face so hard that we cannot open our eyes. I could only guess what persons who are blind must feel like when in a dangerous situation, as their other senses take over with a heightened sensitivity. I hear the wind whistling through the center console of our small boat, reminding me of the terrors we lived through during the passing of Hurricane Andrew over Miami in 1991. It was actually 12 years ago this month; what a coincidence.

Not being able to open my eyes, as the pounding rain and waves feel like bullets piercing my face and body, I feel my hands tightly wrapped around the aluminum tube that holds the canopy over the center console of the small open fisherman vessel. As the waves push the boat back and forth and from side to side, I can only hope that my hands won’t fail me, and that I could continue holding on. I could sense the difference between the cool rain water and cool wind and the very warm soothing waters of the sea as both just repeatedly slap me ferociously on my face.

“Take me out of this storm!” I scream to my husband in panic over the train-sounding wind. In response, I can feel him turning the boat to the left to try to get towards the edge of the storm as opposed to continuing to enter the storm head on. Just as he turns to the left, the waves that had been hitting us from the front of the boat were now entering the boat from the side with much greater volume of water. I let out a scream, and try to crack one of my eyes open to see if my husband is still there or if the water swept him away. Lo and behold, he was standing right beside me at the wheel with his diving mask and snorkel on his face! This was the only way he could open his eyes and breathe! He needs to see the navigational charts, so that he could find our way back to land. Otherwise, the storm would take us out to sea deeper into the Gulf of Mexico. I let out another scream as yet another wave enters our boat in full force.

“What do you want me to do?” he asks me in desperation, knowing full well that I had no clue what we could do, but probably asked me out of respect as we were potentially facing death in the face. I squat down just a little to try to not let the waves keep hitting my body so hard, and I calmly and somewhat softly said to him, “Do whatever you think is best. I think you would make the wiser decision here.” And with my eyes closed, and as I try to firmly grab onto the pole with both hands, I could feel him turning us to charge towards the storm head on.

I lower my head in submissive resignation to the inevitable, and silently call upon my Maker. “Please save us! We don’t want to die. There are still things we would like to do. Please send us an army of your angels to surround us and carry us through this storm.” I feel more relieved lowering my head since the rain and waves would hit me on the top of my head instead of slapping me on my face. As we enter increasingly deeper into the storm, the wind grows stronger, the waves rise higher, forcing my husband to hit the gas full throttle into the waves. The boat flies up into the air and slams down onto the water over and over again, as this way, the water entering the boat goes out the rear of the boat back into the ocean. He can’t slow down or the water would quickly fill the boat and sink us within a few minutes, and we are still hours away from shore! It would probably take longer to return to land than what it took us going out to sea, since the current keeps pushing us out to sea while we’re in the storm. It’s like swimming against the current, one doesn’t move forward, but instead, remains in place or is pushed out to sea.

As I have my eyes closed, I begin to ask my Maker whether our time has come, and if this is the way we would die. I thank Him for allowing our cause of death to be drowning at sea because the sea is the love of our lives. I ask my Maker whether I would indeed die at this time because I still didn’t think I had completed all the works I was supposed to do here on earth. Yes, I have already raised my sons, and my parents are elderly, so they will soon pass as well. Did I fail Him with complacent inaction? What would become of the MEBO Mission upon my death? Then I realize that of the 10 MEBO Directors registered in the US and UK, and the many sufferers and experts who regularly volunteer their services, I feel certain that MEBO’s Mission would continue on. After all, research is currently underway with good funding, a strong fundraising campaign will soon be developed to support it, the little money the Charity has is in good hands, and the directors can easily carry on… So, was this really the end of my days?

My hands are growing very tired, and I am having a very difficult time maintaining my grip on the cold, slippery bar. My legs are giving way, and all I could hear from time to time through the whistling wind are obscenities coming from my husband’s mouth, which is wrapped around the snorkel he is using to breathe as he struggles with the navigational charts. The strong wind with the cold rain is now making me feel very, very cold, and my hands and legs are shaking. Even the warm ocean water now feels very cold. I know that if the boat would sink, it would not take long for me to die of hypothermia – so it would not drag on for days.

For close to one hour, we weather the storm, and I feel the boat beneath my feet bounce around like a small can of sardines on the waves. We wouldn’t even show up on radar, I felt so small. In the grand endless universe, we are invisible somewhere in this blue planet. What would life after death be like, I wonder. As my strength is washed away with each pounding wave, I ask God in my delirious state whether heaven is in another part of the universe, is there life in the black matter of outer space that humans have not been able to detect yet? I feel comforted by God, and a sense of resignation possesses me. Time passes.

Somehow, we manage to pass through this seemingly eternal storm. The crossing has taken us 45 minutes to an hour. As we look behind the boat, the huge gray curtain of rain and clouds are now behind us heading out to sea, as we are heading towards land. But as I turn and look ahead, there is only water as far as the eye could see over the horizon – no land in sight.

My husband finally takes off that hideous mask and snorkel, as we collapse on the bench in the back of the boat. The waves are now taking us wherever they want, but we just have to let go and rest for a while. I look at my husband and say, “I guess we’re not going to die today.”

“I guess not, but we used up a lot of the gas fighting the storm, and we might not have enough to make it back,” he replies.

It took over an hour to see land in the horizon, and according to the gauges, we made it back to the house with only 0.8 gallons of gas left. My husband can’t believe it, and keeps saying that the gauges must be wrong.

As soon as I get back to the house at 1:30pm, my hands are uncontrollably shaking as I dial the phone to call my mother again. I don’t mention our boat experience to her, and instead ask to speak with my father who himself has been facing death while in the hospital for over a month now. He is getting ready to take a nap after having worked very hard on his physical therapy in the morning. He fought a good fight yet again one more day. “I’ll see you soon, papi. Have a good rest.”

R.I.P. Mi papi querido
1929 - 2013 (August 31st)
Mi mami querida
1932 - 2015 (December 24th)


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