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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
Stage 1 : 27 Canadian volunteers to test
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

Sunday, April 29, 2018

MEBO Mental Health column for May : Tips for a stress-free doctor’s visit

MEBO Mental Health Monthly Column.
May 2018
By Crissan Rosalia, MEBO Mental Health Director
Tips for a stress-free doctor’s visit
A practical guide for
patients with body odor, bad breath and TMAU

Author: Crissan Rosalia, MEBO Mental Health director, Health psychologist, Msc. or

A lot of patients with malodor conditions have had negative experiences at the doctor’s. Consultations with doctors can be quite stressful. However doctors are needed because they can help clarify symptoms, refer patients to specialist and they can prescribe treatments.

So why is it so difficult for doctors to understand malodor conditions and provide adequate help? Sometimes it’s a lack of knowledge, many doctors have never heard about Trimethylaminuria (TMAU), because it’s so rare. Because the symptoms tend to be intermittent, stress related and not always present, doctors might not be able to detect the odors at time of the visit. In order to get the doctor to understand and refer the sufferer to the right specialist, the sufferer might have to prepare and provide the doctor with elaborate information. This information can help to convince the doctor to refer for testing, referral or treatment.

Sometimes the doctor might get the indication that the symptoms are related to a mental condition. Patients might be considered to be delusional, depressed or anxious. Doctors might also suspect a psychological condition called Olfactory reference syndrome and might refer the patient to a psychologist or even a psychiatrist. This is not helpful at all, especially If sufferers really has a physical condition.

Finding a supportive and understanding doctor is very important. The diagnostic and treatment plan should be developed in accordance with you, the patient. Both the patient and doctor have to feel comfortable with the action steps. The goal is to find a balance between the doctors professional opinion and finding the best treatment for you.

Overall, in order to have a successful consultation with your doctor, preparation is key ! This article gives a couple of practical tips to help malodor patients prepare for a doctor’s appointment.

Before the appointment

1) Try to plan the appointment on a day and at a time that is a good and relaxing moment for you. – Try to choose a quiet moment during the day, when the waiting room is not busy with a lot of patients. - Good options are at the end of the day (the last appointment of the day) or early in the morning (the first appointment of the day). After the doctors lunch break is another good option. You can ask the assistant to plan the appointment at one of these times for you.

2) Book a double appointment with your doctor. You will have more time to talk about everything you need to discuss. 20-25 minutes is a lot better than 10- 15 minutes.

3) Print out information about malodor conditions
- Print information about Trimethylaminuria, bad breath or other malodor conditions such as Bromhidrosis, so that you can provide your doctor with information. He/ she might have not have heard of TMAU or Bromhidrosis.

4) Visit buddy : Ask someone, you trust to accompany you to the appointment - This can be a family member, a partner, a friend, even a coworker or a social worker. - It would be very valuable if this person can confirm/validate your story and the odors. - This person can help support you and be an extra set of eyes and ears. - This person can also take notes and remind you of what you have to ask

5) Prepare the visit by writing down what you want to discuss.

- What kind of symptoms do you have ?
- How long have you been experiencing these symptoms ? 
- And how do these symptoms impair your daily functioning ? 
- Why have you decided to see the doctor now ?
- What do you think is causing the symptoms ?
 - A good way to gather information is to keep a symptom dairy and to write down what medications and supplement you take daily.

6) Goals: Think about the goal of your visit.

 - What do you want to achieve with the doctor’s visit ?
 - Do you want the doctor to perform a physical exam or refer you to a lab for blood work ?
 - Do you want a referral for further research with a specialist, a metabolic specialist, a gastroenterologist or ENT specialist ?

7) Rehearse your story, prepare for the appointment by rehearsing what you want to discuss with your doctor and keep your goal for the visit in mind. How can you explain your symptoms in a clear and rational way ? Unfortunately some doctors can misinterpret the information depending on how you tell your story and how come you across, so choose your words carefully. 

8) The TMAU/odor symptoms can be difficult to explain, especially because these are so rare and mysterious at times. Include tangible evidence, like comments from other people. Things you have noticed etc. Take the ‘evidence’ you have collected with you to the appointment

9) Avoid mentioning “vague” words, like “I think I smell”, “I see people rubbing their nose and think it’s because of me”.

At the doctor’s office

1) Take notes so you remember what you discussed. 

2) You can also record the visit with a recording device. Most phones have an audio recording app. Just make sure that your doctor is onboard and is aware that your recording the conversation, sometimes the doctor might object to the conversation being recorded.

3) Be assertive. You want to convince the doctor, so you have to be assertive.

4) So check your body language, sit up straight, act confident, look the doctor in the eye and speak confidently and firmly. You want to make sure that your story and your goal for the visit come across loud and clear.

5) There is no need to feel ashamed. Doctors are used to discussing “embarrassing” topics and symptoms with patients.

6) Ask your doctor if he notices an odor from you or in the room. 

7) Next explain the reason and goal of your visit, check your notes if you need a reminder.

8) Show the doctor the documents. information about MEBO, the TMAU diagnostic test. 

9) You can also mention the support groups, like Facebook, and the experiences of other members.

10) It is okay if you get emotional. If you feel sad and want to cry it’s okay. Explain how much the condition is hurting you and has impacted your quality of life.

11) Describe the impact that the symptoms have on your daily life. -Talk about the stress and the emotions - Talk about the steps you have taken to try and control the odors

12) If a buddy has accompanied you to the visit, let this person confirm the story and explain their experiences

If the doctor has questions about your symptoms:

1) Avoid mentioning “vague” words. The TMAU symptoms can be difficult to explain, especially because these are so rare and mysterious at times. Try to avoid words and descriptions like these: I notice people sniffing, coughing, pointing and laughing. Unfortunately these are not signs that doctors might take seriously. 

2) If you have received direct comments from people around you mention this and mention a couple of examples. 

3) Describe the odors that people have mentioned.

4) Avoid words like : I think people comment behind my back, but say “People next to me comment on odors. People have told me that I smell”. 

5) The observations have to be tangible. So also mention other things you have noticed, like smelly clothes or a certain smell in the room, people at the office are always opening windows when you’re around etc.

6) If the doctor says that he does not notice an odor. You can mention that the odors are intermittent. Explain that other members in the support group have experienced and confirmed this.

What if you suspect that you smell, but people have never commented on a smell ?

1) If you have not received any direct comments, but you have other proof, describe your observations as clearly as you possible can. 

2) Sometimes you are not sure if your symptoms are real. 

3) If you are not sure about the cause and of the existence of the odors, be honest with your doctor.

4) Ask him/her if he/she notices an odor.

5) Also ask your doctor about Olfactory Reference Syndrome.

6) Going through diagnostic testing to exclude TMAU and other physical issues might help you get reassurance and can also help to find the adequate treatment if the symptoms are purely psychological.

The Next step: The action plan

1) So when you have agreed on an action plan: Ask for details. A lot of times doctors have a tendency to speak quickly and in professional terms. So if something is unclear, just ask:
 - Can you repeat this in a simple way so I can understand ?
 - Why are you referring me to this specialist ?
 - What are you looking for with this diagnostic test ?
 - What are the costs for testing ?
 - Will my health insurance cover the costs ? (also a good question to repeat at the pharmacy when picking up your meds)
 - When will the test results be in ? Or can you check how long the procedure will take ?
 - Why are you prescribing these medications ?
 - Are there alternative treatment options ?
 - Are there any side effects (good question for the pharmacy too)

2) Schedule a follow-up appointment, especially if you are not assured and have more questions.

3) Another option is to ask another doctor for a second opinion.

4) And finally, thank your doctor for his time and tell him/her that you appreciate his/her efforts for finding a solution for your health issues.

5) Work on keeping positive relationship with your doctor, this will only lead to positive benefits for you in the future

6) Finally, If you don’t feel support from your current doctor, find another doctor!


Crissan Rosalia
Mental Health Director

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Anonymous said...

This is a great article for dealing with your doctor. Most of it is commonsense. However, it helps to have it written out in steps. Thank you for posting.

May 2, 2018, 1:20:00 PM
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