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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


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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
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Latest click here (26 oct) :
17 samples returned

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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

Wednesday, January 23, 2013

Community Snapshop Anonymous Questionnaire

Summary See complete responses

Please participate in Survey below
Click on icon below for updated stats results.

  1. I developed TMAU from taking a drug. At first symptom were mild and manageable; but at age 55, along with hormone changes, my odor problem escalated dramatically, along with night sweats. Hormone replacement therapy failed to help. I would like to see the subject of TMAU and menopause addressed if possible.
  2. I had lots of earaches and tonsilitis as a child and therefore took many antibiotics: I wonder about the effects of these.
  3. As far as I am aware halitosis only started with onset of constant nerves. The aroma seems to be generally around me so I am presuming it comes through the skin, is worse with constipation and have also recently noticed a sever increase in urine smell. Severe tiredness started at the aprox age of 26 and has steadily worsened (I am 40 now) I also have very bad short term memory.
  4. I don't think it is relevant but due to an earlier question i thought i would mention that i also have spinal abnormality (fused, mishapen lower verterbrae and possible double canal) and some nerve damage from this. I also have occasional dizzy spells, palpatations and tension headaches. But mainly I have not had a hug for years!!!!!!!!!
  5. It would be great to see some research focused on other forms/causes of odor disorders in addition to the work already being done on TMAU. Since FBO seems to be one of the most common odor complaints, perhaps investigating sulfur metabolic processes might be of interest to the researchers?
  6. Classic case of TMAU, diet and fasting/cleansing can bring it to 0, but still have Alveolar odor when talking loudly.
  7. I havent gone on any diets or anything yet, mainly because I love food and cant stand the thought of eating like that, especially when it only reduces odor and may not even be helpful. GL to you guys, cant tell you how much it means just to know people are actively working towards a solution.
  8. I made my own research, and found out that alcohol, protein and fat are the most triggers of my condition, being alcohol the no. 1. halitosis turns stronger when I lay down right after having food...a white
    stuff appears over my skin, like when you apply baby powder over it...Low fat and no protein diet help me to low body odor somehow I`d say up to 70-80%. At times it disappears completely for about a week or two, but it sure returns back to me...
  9. My odour gets worst when I am on my period. The odour also gets worse when I am on the first few weeks of a candida diet, the odour level then lowers, but does not go completely (longest period I have been on a candidadit is 4 months). Now vegan and restricting sugar and carbs which has not eliminated the odour but have not been on this diet for significant length of time yet.
  10. I was told that I have a small hiatal hernia. I have Polycystic Ovarian Syndrome and recurring uterine fibroids, which may or may not be related to this issue.
  11. While I have not been diagnosed with anxiety or depression, I do feel that I am always "revved up" and sometimes have difficulty concentrating on tasks. I always performed well in school, so I guess there was no "reason" to look into this during my childhood or adolescence.
  12. Fructose intolerance; low fodmap diet helps tremendously
  13. On the question of migraine, it should be two separate questions. In my case YES for migraine headaches, NO for increased odor due to migraine.
  14. In relation to any conceivable link with a mental health condition (and in my case, social anxiety), I maintain an open mind on the subject. However, it's debatable which exacerbates the other! I've often pondered that - and I am unsure of the answer.
    Certainly feeling 'stressed or anxious can result in 'dry mouth' and I feel this is a contributory factor in the halitosis issue...but only a contributory factor from what I can comprehend
  15. After ingesting sugar, I develop diarrhea and bloating.
  16. It is so hard to know what diet to follow. When I was very low carb (ie Atkins) my breath was horrendous. While I know that is typical with low-carb diets, someone asked me if I had pooped on myself and I had my mouth closed. I cannot remember any improvements in lower-carb diets (ie South Beach).
  17. I am very lactose intolerant, and this was misdiagnosed as allergies until a few years ago. I had been weaning myself off dairy since my early 20s, but once I got off completely, other symptoms began to fade. I need to know more about long term damage from being very intolerant to dairy, and how to fix the damage (dysbiosis, physical damage, etc).
  18. I am also very confused about the use of probiotics, and since I am self-treating using the TMAU protocol I found here, I'll need probiotics when I am done with the antibiotics. I wish I could find some recommendations here of good products (I'll keep looking around, maybe I missed them).
  19. Intermittent odor like mine is very difficult to understand and/or control. Testing is also very difficult because results may not always be consistent.
As you can see, all participants remain anonymous.


María de la Torre
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Anonymous said...

am i correct in seeing that the majority of people report having no diagnosis of gastroinstestinal conditions. and that the majority of people report breath odors. or only breath odors and not body odors? i do not understand the intermittent part where they say doctors and dentists do not smell any odors. if you see yoru doctor more than once a year or your dentist every 6 months as adviced to do so then eventually at some point a medial profeesional should have been able to smell the abnormal odors, even at least 1 time???? i am curious to know how many people have odors that the dentist has been able to smell and report as abnormal and how many people have body odors that a medical professional has been able to smell and report as abnormal. and how many people have never had a dentist or medical proffessioanl of any kind ever be able to smell the odors and report them as being unsual but yet they themselves stil report odors.

Jan 23, 2013, 9:38:00 AM
Maria de la Torre said...

This is a great comment with very valid questions. From what I am noticing in the responses, there is a great deal of self-diagnosing taking place in our community, and relatively little formal testing. In part, this is because there are very few body odor/halitosis tests out there, or because testing is very expensive in some countries.

I will write the next post in this blog addressing your questions and noting the comments made in the Digestive Medical Conditions. Please note that 20% wrote “Other,” list digestive issues symptoms and indicate that they have not been tested. Some say they haven’t been diagnosed, but then describe having gastrointestinal problems. Please keep in mind that this is an informal questionnaire, a tool that is being used for sufferers to communicate with experts. And overall, there seems to be a large percentage that hasn’t tested, including testing for TMAU (35% not tested).

Jan 23, 2013, 10:49:00 AM
Anonymous said...

i think the best way to communicate to experts and researchers and SSDI, is to go to our doctors and dentsist and allow them to fully exam us and see that we are well groomed and hygenically do everything properly, and despite that be able to smell the odors and report them as being abnormal. i too have finacnail issues and a lack of health insurance, however where i live most free or slding fee clincs are on direct bus routes, so i have access to a dentist every 6 months for just $20 a visit and to a doctor for an exam once a year for just $20 a visit. Our doctors and dentists may not be able to diagnose, treat or cure us. but they can help validate us to SSDI and to potential researchers. They can help validate us they can help us get the word out so everyone will understand us and not blame us. I know how emmbarassing it can be to go in public to a doctors office, and how much anxiety it can cause, but i do beleive this would be a good first step for everyone. I know the subject of my comment was not what this blog was intended for, but if we do not overcome the embarrassment and anxiety and help ourselves then we can not expect anyone to be able to help us. thank you for all the help and all your time and energy you rpovide to us.

Jan 24, 2013, 9:39:00 AM
Maria de la Torre said...

Wow, this Survey has really brought to light a great deal of very essential information that not only experts, but also sufferers need to be fully aware of. These last two comments are so good that they merit a post of their own. It depicts what the informal questionnaire is illustrating - sufferers are guessing way too much about what their problem is, sufferers need to be proactive in this movement and speak out to their doctors, do all possible to get tested, if for no other reason, to rule out known odor producing illnesses and also to raise awareness. We can't just wait for sufferer organizations to do it all because it won't materialize. Each sufferer needs to be a part of the solution for the solution to come to fruition in our lifetime.

Jan 24, 2013, 10:02:00 AM
Maria de la Torre said...

Anonymous, your comment is very appropriate for this blog, please don't think otherwise. Respectful and truthful comments such as yours is what our community needs, so please look at this blog as a medium for you to express your thoughts and suggestions. Thank you!

Jan 24, 2013, 10:04:00 AM
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