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Friday, May 24, 2013

The MEBO Conference and Social Meetup in Memphis

As was announced in the post, “Agenda for 4th Annual MEBO Conference 2013,” many interesting topics were discussed at our Memphis Meetup, including a thorough discussion of the MEBO TMAU Test Results Chart. In addition to presentation of materials provided by experts and review of materials used in previous meetup conferences, the emphasis this year was on applying effective group dynamics to make the learning process an experiential one, as opposed to a lecture presentation approach.  The group immediately bonded, and everyone felt a deep sense of belonging and acceptance. Each person in the group took ownership of the needs of the whole group and opened up to share experiences and knowledge related to the topic at hand. The sense of unity of our group was palpable with a genuine care and concern for each other.
Below are the topics discussed:

NUTRITION, NUTRITION, NUTRITION!

We were very fortunate to have an attendee who had never been to one of MEBO’s annual conference.  She is a sufferer and is very much involved with a group called Food Addicts in Recovery Anonymous (FA), and her contribution to the group discussion on the proper selection of foods and self-control in responsible dieting enriched the quality of information exchanged. Anyone interested in learning more about eating habits and self-control, please visit the FA link http://www.foodaddicts.org/ and/or email onrichar@gmail.com.

We discussed how we have all heard at one point or another the alarming news of how sufferers have made themselves seriously ill by eliminating choline completely from their diet, in spite of MEBO warning against this, or starving themselves from other essential nutrients. We reiterated that the majority of sufferers do NOT have TMAU, but for lack of better guidance, many sufferers put themselves unnecessarily on a very unhealthy extremely low choline diet.

An example of a proper approach was discussed of a sufferer who tested negative for TMAU, who was working on a very well-controlled exploratory case study with her MD, to help her determine what foods trigger her odor. She has graciously shared her almost daily diary of this experience with our community on the comment section of a post in this blog, “Digestive System and Body Odor / Halitosis.” What we all found remarkable is how with her physician’s guidance, she was able to eat a couple of eggs a day without her odor being triggered! Yes, TMAU IS NOT EVERY SUFFERER’s PROBLEM! In fact, 70+% do not have TMAU, so why go on the TMAU odor-management protocol without first being tested for TMAU?

However, if one has been diagnosed with TMAU, and the low choline diet is recommended, please refer to the post in this blog,“What to eat on a TMAU Low-Choline Diet.” Another great source of information on TMAU and diet is the Trimethylaminuria page of RareConnect, and particularly the post, “How Do We Get Protein and Fiber?.”Readers are encouraged to join Rare Connect, a partnership of NORD and Eurordis,
 
Additional reading on choline:
 

HALITOSIS FROM MOUTH OR BREATH?


We are most grateful to Dr. Murat Aydin, DDS, PhD. Doctor of Philosophy in Microbiology for giving us a paper for our conference of an excerpt from his book, Halitosis, In: Oral Microbiology.  
Cited as:
Aydin M. Aydin M. (2012). Halitosis. In: Oral Microbiology. Aydin M, Mısırlıgil A. editors. Ankara: MN Medical & Nobel, p.97-105
The paper is entitled, How can we understand whether halitosis comes from mouth or breath?” which describes the origin of Oral (malodor) Halitosis and Breath (malodor) Halitosis and the differences of their clinical signs. After listing some of the compounds released in the breath, he adds,


Most of them [the compounds] are end product of lipid, nitrogen, cholesterol, alcohol, carbohydrate, protein or aminoacid metabolism, oxidation of proteins, pancreatic insufficiency, carbohydrate malabsorption intolerance, abnormal gut flora, bacterial gut overload, liver or renal failure, or subclinic trimethylaminuria disease.

Distinction between Oral and Breath Halitosis: Both give similar sign of bad odor in the mouth and/or breath, but the difference is important for both diagnosis and treatment. This handout lists useful tools to distinguish between them, including the following three. See handout for additional information.

                                        i.    If odor continues while mouth is closed, it is probably breath malodor (or nasal malodor) halitosis.
                                     ii.    If body odor is accompanied by halitosis, it is probably breath malodor halitosis.This is because blood gases are emitted from not only the breath, but also sweat on the skin.
                      iii. If more than one kind ofbad odor is present, it is probably breath malodor halitosis.

BROMHIDROSIS AND ODEGON PRODUCTS

In support of further perfecting a product that could potentially benefit sufferers of difficult to control body malodor, and upon the request from Odegon for our community’s input and feedback on the design and development of their products, Odegon patches and garments were handed out during the conference so that sufferers may take with them home.  This was followed by a presentation on Bromhidrosis given by Glenna Gonzalez based on her powerpoint, Bromhidrosis.

See BBC video on Odegon product, Military technology to tackle body odor

Article published by UK News Mail Online, “M&S introduce the suit that can banish B.O..

PURSUIT OF MICROBIOME STUDY


MEBO has been in pursuit of a microbiome study, thus addressing the needs of 70+% of sufferers as well as TMAU sufferers in our international community. We will not stop with this effort until a large-scale comprehensive international program approved by the MEBO IRB is in place. The group brainstormed about this topic, and the session was concluded on a very positive and hopeful note.

WATCHED THE FILM, "THE BOY WHO SMELLS LIKE FISH"


On Saturday night after an early dinner at Corky's and the two-hour Manager's Reception, we sat in our comfortable living room, where we had held our conference earlier in the day, and watch the sneak preview of The Boy Who Smells Like Fish, complements of the Director, Analeine Cal y Mayor and Rhombus Media. It brought tears to some of our eyes in different parts of the movie, as we saw the heart wrenching life of a sufferer interpreted so well by the young actor, Douglas Smith (from HBO Series, Big Love). It is frequently difficult for sufferers to find a way to portray our story encompassing its social and psychological complexities, but the script and professional cast managed to do so very well.

We had three teenagers in our group who saw the movie with their moms who were with us, and when asked if they liked it, they enthusiastically answered, "YEAH!" It is advisable for parents to accompany their young children so as to later hold family discussions and guidance to help them understand the complexities of life with an odor condition. I was very encouraged to see that this new generation will receive this message for the first time in human history through the art of film. Our thanks go out to the Director, Analeine Cal y Mayor, the producers and cast for telling our story and for allowing us to use this film for our ongoing Raising Awareness Campaign.

María


María de la Torre
Founder and Executive Director

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6 comments:

Anonymous said...

Hi , I know this is afrustrating process, and I know some suffers I desperation and fear may come across negatively and that can be draining....I appreciate so much everyone coming together to help, I wish that I was able to attend.........I'm doing the boost diet......I have had a remarkable strong fish odor all weak.....everyone says it smells fishy....I am not sure why I have this fishy odor yet???? I don't know what's triggering it yet......I want to stress that I have a fishy odor and tested negative for tmau....my doctor assured me choline IS NOT causing the fishy odor......and sulfur foods are not causing it either.....its a long trial and error process right now my doctor and I are both stuck confused by the intense week log fish like odor......I ran out of align 4 days ago and have gone now 5 days without takingcthe align probiotic....the odor began after eating a hot dog and white bun.........eliminating foods I think might becthe wrong way to go...you need to find a methodical system of testing foods not eliminating foods....I eat eggs every day now and i thought they caused me problems....on any given day the immuje system can react slightly different to foods and the microbes can react differntly as well as well....I caught a virus feels like a head cold its going around at work could this immune response affect my odor???????? We don't know yet......I'm mixing 2-3 eggs with cheddar cheese and no odor or negative side affects occur......

May 25, 2013, 9:51:00 AM
Maria de la T., Founder and Executive Director, MEBO Research said...

A virus triggers odor in me every time without fail. That could be it in your case???

Maybe next year we'll do the MEBO Annual Meetup and Conference in NYC... At least this is what everyone was saying in Memphis. We'll see.

May 25, 2013, 1:50:00 PM
Anonymous said...

I'm close to nyc so that work for me......boost diet update.......I hope everyone can find their unique triggers, it worries me that people eliminate foods without knowing triggers first. I have a fishy odor but do not have tmau, another person may not have fishy odors but might have tmau......I agree everyone should be tested......I began taking the align probiotic again this after noon.......

May 25, 2013, 2:24:00 PM
Anonymous said...

Boost diet update..... huffington post 50 shades of gluten intollerance, my doctor believes this ALL applys to me, we do not yet know if this caused the body odor issues, or if the body odor issues caused this??????? What came first the chicken or the egg sort of question..........so we are finding answers.......more reason why simply eliminating foods is not the most affective or gealthy or safe strategy...you could eliminate eggs fish meat and bread could be your problem??????????

May 28, 2013, 12:58:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

What an interesting article! Thanks for sharing it. It would be interesting to see if there is any relation to this and breath/body odor conditions.

May 28, 2013, 1:39:00 PM
Anonymous said...

My doctor and I are working on figuring that out now....a gluten free diet does significantly decrease my odor some days it is undetectable.......I am still testing food combinations..........maybe I need to stop all dairy?????? Maybe brown rice??????? Everyone has different triggers I'm sure...for me gluten is a trigger.....but we still do not know what the body odor issue is yet??? It will take time of trial and seeing how my body responds this hopefully will give us more answers......its funny I thought eggs increased the odor a lot...my doctor asked me what I eat with eggs.......I replyed pancakes. Waffles. Toast. English muffins. Bagels. Cereals. Pop tarts or oatmeal......all high gluten foods.......it was not the eggs it was the gluten foods I'm eating with eggs that caused odor.......since eliminating gluten I can eat all the eggs I want to without odor increase........I am confident my doctor andvi will find more answers for me....I hope everyone can learn their triggers, my thoughts are with those people still struggling without answers........

May 28, 2013, 8:20:00 PM
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