upcoming UK meetups : 4th June and the big September International meetup

A message from Arun Nagrath, Owner of the bodyodorsupport.com forum
Upcoming London meetups : 4th June and 10-11 September : Everyone welcome

Hi guys, Arun here. Well, for any members who don't know me, I have a scientific background, being a pharmacist with some experience of odour research.

I also organize meet-ups here in London, UK, for sufferers of peculiar breath/body odour conditions, whether diagnosed or undiagnosed. The aim of these Meet-ups is to share tips and to network/brainstorm and also to make new friends who understand what you are going through.

The first Meet-up will be held 1pm onwards on Saturday June 4th 2011. It will be held on a boat called The Tattershall Castle, moored on the river Thames near Embankment underground station. It is an informal event, just turn up in jeans if you like. We tend to stay on the boat till evening and you can come and go when you please. We sit on benches near the outside bars and have drinks and snacks.

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The second meetup will be held in the same place 1pm onwards on BOTH Saturday 10th and Sunday 11th September 2011. The meetups are a lot of fun and most members stay all day. Some come and just listen whilst others chat about their experiences and the nightmare they have been through.

People come from all over England to our meetups. The September meetup is an International meetup and members come from all over the world. We may get 8 members coming from the US alone this year! I will have my mobile with me at the meetups in case anyone gets lost. The number is 07753 492 759.
Arun (Scientist42)

Znose for classifying body odor/halitosis compounds

There has been interest in the body odor support forum recently about the Znose. We do not know if it is the only option for detecting body odor/halitosis using an 'Enose' (electronic nose) to a clinical degree, however it certainly seems up to the job ; measuring molecules in parts per trillion, being reasonably portable, and giving instant results of any peaks in the air. It uses gas chromatography for measurement. This video is from 2006, which seems to be the older Znose model. An potential research route for defining all forms of body odor/halitosis would be to use such a device in a study. In fact the Znose was used for a 'surface' body odor study in the past

Analysis of Body Odor using the Znose (PDF, Edward J Staples) 

We are informed a Znose is around $28,000 but do not know if it can be, for example, hired.

Balance by DAWL01

http://www.youtube.com/user/DAWL01

E very once in a while we need to get away to a spiritual place where we can re-energize and feel healing peace. A very generous person who is not a sufferer has offered to share his interpretation of this peaceful experience with nature with us. It is obviously a professional job, and he shares it with us without a fee. Our heartfelt gratitude goes to this very special person!

Enjoy! May we all find solace and peace through this beauty.

María

Heart disease funded project may involve further research on TMAU

Research Asserts: "Gut flora metabolism of phosphatidylcholine
promotes cardiovascular disease"

As a result of posting about and promoting MEBO’s self-directed team concept, in an effort to “think outside the box” and to seek opportunities to “piggyback” onto currently funded research that may also benefit body odor conditions involving genetics, metabolic enzymes, and/or gut microbiota, MEBO has received valuable numerous leads from sufferers. There is one lead in particular that seems to be very promising, as MEBO as been carrying very interesting conversations for a few days now with the head of an NIH funded research project, which involves the odorous TMA producing gut bacteria. Of course, this is just the initial part of a research project. According to Stanley Hazen, M.D., Ph.D., this study could possibly find treatment which could allow sufferers to eat normal levels of choline in their diet.

Cleveland Clinic is ranked one of the top hospitals in America by U.S.News & World Report (2010).

Unfortunately, even if this study concluded, it would take a minimum of a few years before any product could be out on the market which could help with the condition. Nonetheless, serious research with strong funding is currently underway with mice, and within a year or two, they will begin human clinical trials.

Dr. Hazen says that they are looking at ways of eliminating or suppressing the production of TMA in the gut, as their data suggests this could possibly help decrease cardiac risks.

DOCTOR HAZEN’S COMMENTS

We at MEBO Research have been in contact with the lead researcher in the TMAO heart disease predictor study, Stanley L Hazen, MD, PhD, section head of Preventive Cardiology & Rehabilitation at the Cleveland Clinic. The Cleveland Clinic is one of the top ranked heart disease hospitals in the country. Dr. Hazen says that they are looking at ways of eliminating or suppressing the production of TMA in the gut, as their data suggests this could possibly help decrease cardiac risks. Coincidentally, this would effectively 'abolish' TMAU, but not FMO3 deficiency. Since the study has to do with heart disease primarily, it is of primary concern to the medical community and society. When asked how soon clinical studies might begin - Dr. Hazen tells MEBO Research,

While small pilot studies in humans are already under way, - we are still years away from a potential therapy.

This post was authorized by Dr. Hazen.

MEBO is still pursuing "piggyback-type" of research, not only on TMAU but of other VOCs as well. Creative brainstorming ideas are always welcome from anyone in our international community. They can result in innovative ways of finding answers, grant-funded research, and treatment. THANKS TO ALL WHO HAVE PROACTIVELY GIVEN US LINKS AND REFERRALS!

Dr. Hazen added, "Another remarkable finding is that choline – a natural semi-essential vitamin – when taken in excess, promoted atherosclerotic heart disease. Over the past few years we have seen a huge increase in the addition of choline into multi-vitamins - even in those marketed to our children - yet it is this same substance that our study shows the gut flora can convert into something that has a direct, negative impact on heart disease risk by forming an atherosclerosis-causing by-product...The studies identify TMAO as a blood test that can be used in subjects to see who is especially at risk for cardiac disease, and in need of more strict dietary intervention to lower their cardiac risk," Dr. Hazen said.
http://www.eurekalert.org/pub_releases/2011-04/lri-rfl_1040611.php

Researchers led by Stanley Hazen, a cardiologist at the Cleveland Clinic, didn’t start out to study gut bacteria. In fact, says Hazen, he had “no clue — zero,” that intestinal microbes were involved in heart disease. “I’d never even considered it or thought of the concept.”

Hazen and his colleagues compared blood plasma from healthy people to plasma from people who had had heart attacks, strokes or died to see if substances in the blood could predict who is in danger from heart disease. The researchers found 18 small molecules associated with fat buildup in the arteries. One of the best predictors turned out to be a by-product made when gut bacteria break down a fat called phosphatidylcholine (also known as lecithin). http://www.sciencenews.org/view/generic/id/72372/title/Gut_microbes_may_foster_heart_disease

http://www.nature.com/nature/journal/v472/n7341/full/nature09922.html

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
The MEBO Forum Please sign the MEBO Petition

IMPORTANT NOTICE: It is the author's intent that readers not be mislead by our new "piggyback" approach with other disease focused research to mean that TMAU sufferers have these diseases. Having TMAU does not mean that a sufferer is going to necessarily have heart disease, epilepsy, learning disabilities, anxiety disorders, or any other condition as a result of TMAU, simply because we strive to piggyback on any research done in these fields that may be mutually beneficial.

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New research paper suggests high TMAO levels associated with heart disease

The more of this by-product, called trimethylamine N-oxide or TMAO, a person or mouse has in the blood, the higher the risk of getting heart disease, the researchers found.

Gut bacteria are actually middlemen in TMAO production. The microbes convert lecithin to a gas that smells like rotten fish. Then an enzyme in the liver changes the foul-smelling gas to TMAO...

...The researchers don’t know exactly which types of gut bacteria make TMAO.

These findings show that the interactions of gut bacteria with diet can influence health, says Rader. The work also suggests that probiotics or drugs might be able to block TMAO production.

2011 Pubmed Abstract : Gut flora metabolism of phosphatidylcholine promotes cardiovascular disease

A new research paper suggests that high trimethylamine oxide (TMAO) levels in the blood may be a predictor of heart disease. This is inadvertently of special interest to those with trimethylamninuria because the high TMAO levels will be a result of gut bacterial degradation of choline to trimethylamine (TMA) which is then oxidized by the liver to TMAO. So it may lead to more research into TMAO, particularly into which gut bacteria produce TMA since it currently seems not to be public knowledge as to which species of bacteria produce the TMA. It may also lead to TMAO being more commonly tested. With TMAU, TMAO is probably mostly an issue in secondary TMAU, because in these cases the TMA and TMAO levels are much higher than normal. The authors may not have researched if TMA can be a predictor of heart disease too, because it is not expected to be in high levels in most humans (being converted from TMA to TMAO). In the TMAU community this is unfortunately not the case.

At this stage we can only watch with interest to see how this new lead develops, but hopefully it may indirectly (or directly) lead to more interest and treatment of TMAU.

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Links:

Science News : Gut microbes producing trimethylamine oxide may foster heart disease

Eurekalert.org article on subject

Abstract in nature.com
Supplementary information in nature.com

Gut Bacteria Classify People Into Three Types

The EpochTimes
by Cassie Ryan
April 20, 2011

Dr. Elizabeth Shephard told us in her PowerPoint presentation on TMAU/FMO3, which she created for our Washington DC Meetup earlier this month, that there have been studies on gut bacterial genes associated with traits like age and weight indicating that there may also be markers for traits like obesity or diseases.

A team of scientists led by Peer Bork at European Molecular Biology Laboratory (EMBL) in Heidelberg, Germany, looked at data from four countries, and discovered that, "the three enterotypes are not associated with nation or content," but rather,

“We found that the combination of microbes in the human intestine isn’t random,” Bork said in an EMBL press release. “Our gut flora can settle into three different types of community—three different ecosystems, if you like...The fact that there are bacterial genes associated with traits like age and weight indicates that there may also be markers for traits like obesity or diseases like colo-rectal cancer which could have implications for diagnosis and prognosis,” Bork said.

This article also discusses another recent study in which scientists found that stress can alter the number and diversity of bacteria in the gut...

http://www.theepochtimes.com/n2/content/view/55045/

WHO IS MEBO RESEARCH AND HOW DO WE OPERATE?

MEBO Research is an expression, a voice, a desperate cry from an international community of sufferers who seek to get more information on metabolic/systemic and difficult to control body odor conditions. By compiling this expression along with professional literature in a blog and website, this information can become available to sufferers from around the world. In addition, MEBO's authors, who are also sufferers, give their interpretation to the professional article, while indicating that we are not professionals, and emphasizing that we strongly rely on experts that we write to on a continual basis to teach us so that we can spread this knowledge to other sufferers. This compilation of body odor related literature was non-existent, and it was for this purpose that I first founded MEBO Research in 2008.

HOW DOES MEBO RESEARCH OPERATE?
There are 3 main aspects to MEBO’s operations:

1. As noted in the paragraph above, to unite sufferers and experts to compile professional literature that becomes easily accessible to all sufferers from around the world, and to pursue and support research efforts into body odor conditions.
2. MEBO is revolutionary in its approach in that I intentionally refuse to “rule” the company from the top down, but rather prefer that it be a self-directed team approach. In a self-directed team approach, it is the members that tell me what they think we should pursue, what avenues to take, what opinions and interpretations they want to post on MEBO’s blog. That means that I encourage sufferers to think outside the box, and to pursue their thoughts and theories, no matter how revolutionary they may seem, no matter what people’s reactions may be when they read it, and I support their right to do so - to have self-determination, allowing the use of MEBO's name.
3. In keeping with this philosophy, I do ask that the opinions given by sufferers on each post in this blog be a response to a professional paper with the proper reference to this article. If the idea is too way out there in my opinion, and I generally do allow controversial opinions, I may ask that it not be presented in MEBO’s name in this blog; However,I do intentionally want MEBO to “shake up the system” and create a little bit of “anxiety in the intellectual community” to jump start the system and to hopefully get the scientific community to raise questions, address questions, and pursue research.

IN SUM, I ENCOURAGE CREATIVE THINKING, BRAINSTORMING, AND TO RAISE MANY QUESTIONS TO EXPERTS UNTIL WE FIND ANSWERS!… and it seems to be working based on the response I get from sufferers who claim this movement has changed their lives.

MEBO Research is an expression, a voice, of desperate cry from sufferers who seek to get more information on body odor conditions, compile them in a blog and website, so that this information can become available to sufferers.

Fortunately, we have been very blessed in that many experts have come forth and have carry discussions with us, although they do not always want MEBO to publish their unresearched theories or their names in the blog, so we don’t. Only very few experts with whom MEBO has had many discussions have allowed us to publish what they discuss with us, and MEBO respects everyone's right to confidentiality.

So, I encourage EVERYONE – all sufferers in the world, to continue thinking outside the box, to be part of MEBO’s “self directed team” and let’s get the revolutionary ideas out there to be brainstormed, tried and tested. What are the alternatives, to keep the status quo with no change at all and no hope for sufferers?

For example, the quest to have a Universal Standard of interpretation of TMAU Test figures has been a “banner quest” that all sufferers have tossed around in the forums for years (even before MEBO existed), but it hasn’t come to fruition yet. Sufferers testing in any and ALL labs NEED to have their test results clearly document when the figures indicate a SECONDARY TMAU. Mainly because it is an injustice to a sufferer to whom without this diagnosis, their GPs would not prescribe the necessary treatment noted in the article published by the National Institutes of Health in its Medical Library. Why should only those sufferers in the UK benefit from this diagnosis and treatment and not others from around the globe? Why can’t there be a Universal Standard that not only indicates genetic TMAU but also the acquired TMAU? - with TMAU being defined in its strictest terms, as elevated levels of trimethylamine in the urine.

...we strongly rely on experts that we write to on a continual basis to teach us so that we can spread this knowledge to other sufferers.

The article, Trimethylaminuria, published in the US National Library of Medicine, National Institutes of Health is a strong reflection of the GREAT SUCCESS of the TMAU organization that existed and been very proactive through the years, to unite experts from all over the world. This online article is Copyrighted by the University of Washing, Seattle, the main authors are Dr. Elizabeth Shephard, who did the powerpoint for MEBO’s Washington Meetup this month, and Ian Phillips, both from the UK, and makes references to other experts, such as Cashman, Mitchell, Shimizu, Mamer, and others from multiple countries, many of whom MEBO has been in contact with numerous times with a very supportive response from most of them. And many of these experts attended the Trimethylaminuria Workshop in 1999 and 2002, thanks to the hard work of the TMAU organization.

So basically, MEBO has tried to unite sufferers and experts from around the world, and thanks to the use of the internet, it has reached many sufferers all over the world who have access to a computer. It is only an attempt to expand what was already underway and founded by some of the body odor community’s GREAT PIONEERS. I don’t mention their name because they have asked me not to; nonetheless, their presence has been greatly felt throughout the years and they are very much appreciated.

María


María de la Torre
President and Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

How to use this blog "for beginners" Part 2

Back in October 19, 2008, when the blog only had 300 posts, I published a post in this blog entitled, “How to use this blog : for beginners.” Now the blog has 864 posts, and we have grown so much as a community who has sought for and acquired so much more information, and who has been richly blessed with the support and guidance of so many experts. So now, we have so much more new information to offer, that I struggle to find a way to introduce all this information to a newcomer. Where do we begin?

Well we can still refer to the great introductory references noted in the previous post, such as,

Aruns overview on body odor and halitosis (Note: the MSN body odor support group has now moved to a new private site obtained for us by Arun, The Body Odor Support Forum). We can also refer to MEBO Research’s website in which discussion on the different body odor conditions are addressed in the Metabolic Body Odor section and the Trimethylaminuria (TMAU) section where we feature a PowerPoint presentation given to MEBO Research by the renown Dr. Elizabeth Shephard on FMO3 enzyme and TMAU for viewing in the conference part of our Washington DC Meetup 2011.

Going back to this blog, you can browse through the Interviews with Experts section, in which experts have kindly given us answers to many of our questions. Some interviews are easier to understand than others, but it time, things will begin to make more sense, and you will begin to understand your odor condition better. It is in understanding our respective body odor condition that leads us to determining what odor-management protocol to follow to reduce our body odor.

Equally as important to determining the degree of odor, we also do need to become informed on the sensitivity, or lack of sensitivity of the human olfactory system. The post, “Do they smell me or not?” attempts to address this question.

This leads us to some suggestions on some blog posts on TMAU odor-management protocols recommended by the US National Institutes of Health (NIH), and its variations adapted by different cultures. The value of probiotics and prebiotics is also stressed to help with gut flora imbalances (gut dysbiosis), which may have odor-producing microorganisms overpopulating in our gut, irritating the semipermeable wall, thus allowing larger molecules to filter through to the bloodstream, that perhaps should not do so under normal condition. Also, there are TMA and hydrogen sulfide odor-producing bacteria in the gut, vagina, and dorsal tongue that have been treated with probiotics (in some cases successfully).

You will find that there are many posts written on bromhidrosis, hyperhidrosis, halitosis, and foot odor.

A whole page is dedicated to the International TMAU Testing Labs from around the globe, and to the various groups that comprise our International Community Involvement. As an organized international community, we have written an Anthology of testimonials expressed in poetry, essays and short stories. We also carry out our Raising Awareness Campaign in the medical and mental health community, as well as in society at large in multiple countries.

We strive to unite in this blog and in Arun’s Body Odor Support Forum, as well as all the other sites mentioned on this page, to organize our meetups in various countries of the world where sufferers come together to enjoy beautiful surroundings and have the opportunity to share and bond with other sufferers who share the same experiences as well as to learn from each other and from the experts who guide us. You can look at the “Search posts through Labels” for the ‘meetup’ keyword to learn about these.

You might also enjoy watching the 32 different videos we have in various posts in this blog.

This would only be scratching the surface of a well-rounded coverage of body odor conditions and the body odor community, and testing sites, and I hope you find this information interesting and useful in learning management techniques regarding your own body odor condition.

María


María de la Torre
President and Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

TMAU Test and Liquid Chromatography/Mass Spectrometry

As mentioned in my latest Update post dated April 1 in this Blog, Eliapharma has been working on analyzing TMA levels, TMAO levels, and creatinine of the first 38 specimens received. However, Samir was not satisfied with the sensitivity level of the test, as he explains below,

We have performed a method of analysis developed in the past, but this method was not as sensitive as we would have liked, because in order to bring more sensitivity to the test, we have had to compromise the selectivity of the method. Consequently, Eliapharma is obtaining two analytical columns that we have purchased from Japan, which combines polar and non polar groups. Once we obtain and install these columns, I am confident that we will be successful in obtaining excellent chromatography, sensitivity, and selectivity.

Samir Nassr, M.Sc., CEO
Eliapharma Services Inc.
230 Bernard Belleau suite 166
Laval, QC, Canada, H7V 4A9

Once we obtain and install these columns, I am confident that we will be successful in obtaining excellent chromatography, sensitivity, and selectivity.
Samir Nassr, M.Sc., CEO

ABOUT THE ACCURACY OF THE TEST: Many labs have been using a gas chromatography equipment for TMAU testing; and a newer system has come out in the market, the Liquid Chromatography/Mass Spectrometry. If I am not mistaken, I believe that there is a lab in New Zealand and another in Korea that have the new liquid LC/MS. Scientists in the Korea Institute of Science and Technology have written a paper in the Korean Chemical Society Jounal (KCS), Determination of Urinary Trimethylamine and Trimethylamine N-oxide by Liquid Chromatography-Tandem Mass Spectrometry Using Mixed-Mode Stationary Phases(1).

Since TMA is a small molecule and thus is more difficult to detect and measure, Eliapharma's CEO was not satisfied with the results he got in his first 2 and 3 rounds of tests, and he made some adjustments on the equipment until he was better satisfied with it, but still not 100% satisfied. After an indepth analysis, Samir has determined that he needs to purchase two columns (attachments), Capcell Pak CR part no. 93026 to attach to his LC-MS/MS Bioanalysis equipment for this test in order to achieve greater sensitivity and selectivity in the results. So he has ordered it (price $1,500). Samir will not give us to distribute the 3 results of all the tests he's done, until he gets this part and runs the test of all the samples again. Once these columns are attached to the LC/MS, it would guarantee excellent chromatography, sensitivity, and selectivity when working with this small molecules such as TMA.

Meanwhile, Samir informs us that he will run the test again with any and all samples he may have at the time at his lab, before the columns arrive. He will then give these results to MEBO, and if anyone who has tested wishes to discuss these results with me in advance to have a rough idea of how their choline load has affected them, they may email me to set up a private phone call. However, it will be necessary to wait until the columns have been received and the test re-done for accurate results for the sufferer to give to their doctor.

With the shipment of new kits that will go out from the lab on Monday, there will have been 61 samples tested if all are returned before the columns are received.

Everyone's patience is greatly appreciated.

María

María de la Torre
President and Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

(1)Sang Kyu Lee, Dong-Hyun Kim, Changbae Jin, and Hye Hyun Yoo; Bull. Korean Chem. Soc. 2010, Vol.31, No.2, DOI 10.5012/bkcs.2010.31.02.483

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Highlights of MEBO’S 2nd Annual Meetup, Washington DC 2011

The experience we shared at our meetup in Washington this year was absolutely amazing, wonderful, life-altering... and it touched each of us deeply in a very special way. I couldn’t help but see the palpable changes in the facial expressions of those persons who had attended the meetup last year in Nashville. There was a more relaxed, self-assured, peaceful demeanor about them, as they seemed to be more empowered by the greater degree of knowledge we have all obtained since then, and the strong support we have given each other through our trials and burdens throughout the year.



There were many new faces in Washington, some of whom initially seemed to be in dire straits desperate for guidance in employment concerns, understanding some of the causes of body odor conditions, current available treatment options, and information of potential research theories, all of which were addressed by the experts who gave us so much literature and presentations, that we just couldn’t present them all. As the conference unfolded, the stress on these new faces just seemed to be soothed with the information, kindness, and support given, and bright-eyed smiles replaced them. In some cases, tears of joy where shed from time to time.

It wasn’t only the much appreciated information provided by experts that touch our hearts, it was the sharing of sincere kindness and concern we gave and received from each other as we broke bread at breakfast, lunch-dinner, and even our “Happy Hour” with drinks and snacks during our Manager’s Reception. The restaurant servers were very patient with us as we just wouldn’t leave even as they cleaned the area around us after it was all over. We wanted to cherish the moment forever.

The strong support we all felt from the four experts who provided information for the conference part of our meetup held on Saturday, Drs. John Cashman, Elizabeth Shephard, Nigel Manning, and Cheryl Fields, was not only emotionally uplifting, but the wealth of valuable information they shared with us and the presentations they gave us out of the compassion and kindness of their hearts was nothing less than overwhelmingly uplifting. We are profoundly grateful to them for their kind generosity; it is indeed deeply appreciated.

Then on Sunday, those who were able to do so went to the National Mall area to visit the sites. Some went to the various Smithsonian Institute Museums and eventually headed towards the Washington Monument, Lincoln Memorial, saw the Jefferson Memorial from a distance as the paddle boats strolled along on the Potomac River, we paid homage to the three wars memorials, the Korean, Viet Nam, and World War II Memorials. A group of us then took a cab to Georgetown as we strolled through the shops and restaurants, and of course, had our tasty cupcakes.

In sum, this year’s meetup had 3 main focuses: Mind, Body, and Soul; and all three were stirred and revived by the time we returned to our respective homes spread out throughout the country. Of course, we can’t just seem to leave one meetup without discussing the next one to look forward to, and one could hear the resounding sounds of “Miami” and “London” in the air…

Thanks to all for the special encounter you have shared with me. It will never be forgotten.

María

María de la Torre
President and Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

DNA testing at 23andme.com

We have mentioned before that 23andme.com genetic testing service is an inexpensive way of getting your genome tested, including for the FMO3 enzyme associated with genetic trimethylaminuria (usually around $199). Sometimes they do special offers where it is even cheaper. Currently they are offering their DNA test for $99 plus shipping, as long as a $9 a month subscription to their online service is also taken for a year (check details).

23andme.com is owned by the wife of one of the Google founders. They use SNP chips for testing.

Many genetic disorders are listed and easy to find out if you are a carrier or have the disorder. However, trimethylaminuria is not one of those listed, and you have to delve into the 'raw data' and interpret it, which to most non-experts would be nigh impossible. Currently there are 56 SNPs for FMO3 listed in the raw data, and we hope to get an expert to help us compile a table so that people can generally interpret their FMO3 DNA result using 23andme.com.

We will keep you updated and post a table here when possible.

Those wishing not to know their risk to other diseases such as cancers or Alzheimer disease should not tick the box shown when they first go to their results page.

The sample is taken via a saliva sample sent by mail. Some States do not allow consumer genetic testing (NY State ?). The only way around this is to get the kit sent to an address in another State.

Professor Elizabeth Shephard TMAU/FMO3 slideshow for the meetup

This is a slideshow overview of TMAU in relation to the genetic deficiciency of FMO3 enzyme, kindly provided for the 2011 Washington DC Meetup by Professor Elizabeth Shephard of London, who has a long history in TMAU/FMO3 research. Along with Prof. Ian Phillips, she authored the NIH gene reviews article on trimethylaminuria

Abstract from Nigel Manning : B2 responsiveness in a TMAU patient

Abstract from Nigel Manning : B2 responsiveness in a TMAU patient

This is an abstract paper (pre-publication) done by Nigel Manning (Principal Clinical Scientist, Dept of clinical Chemistry, Sheffield Children's Hospital) and others at the same hospital.

It is a case study of a patient with homocystinuria who was on betaine therapy and then over around 10 years started to have a 'fish odor' complaint. The patient was found to have the 158-308 DNA combo that can cause mild genetic deficiency of FMO3 enzyme. The urine sample had very high levels of TMA (392 mmols/mol).

It was decided to try B2 therapy and the TMA levels were checked 5 times over 240 days. In the graph, it can be seen the TMA levels dropped dramatically, eventually being 17 mmols/mol. This is still above Sheffield's normal saturation level of 10.8, but a vast improvement. Also, the % of TMA converted to TMAO  went from 7% to 83%, but this could be due to reducing the level of TMA-producing bacteria alone.

Presumably this study was carried out because people with homocystinuria have to take high doses of betaine. Betaine is known to cause high levels of dimethylglycine, which is recorded as causing a fish odor.

The TMA levels dropped, but we are told the TMAO levels did not conversely increase, rather, the overall TMA + TMAO level dropped. So it cannot be ruled out that the gut infection was reduced rather than B2 causing increase in TMAO function ?? Since high betaine levels are used for another disorder in this study, this suggests perhaps FMO3 function was increased. There still remains a few questions about B2 responsiveness that need to be checked.

All the same, it is an interesting study and B2 responsiveness would make a great study for TMAU. In this study, they used 100mg B2 twice a day.

Table of FMO3 variants provided by Dr John Cashman

Table of FMO3 variants provided by Dr John Cashman 

Dr John Cashman kindly provided some of his research papers for us to view at the Washington meetup. We have chosen to look at the table of FMO3 variants in one of these papers.

As seen in Prof Elizabeth Shephard's slideshow, the FMO3 protein consists of 532 amino acids. Whilst building these amino acids, in theory it means there could be 532 points where mutations could occur that would affect the construction of the final FMO3 protein.

In this table, Dr Cashman has listed some of the common amino acid numbers where mutations occur. Some are severe mutations, other have less or no effect, although some can reduce activity if in combination with another (such as 158 - 258)

Notice that one change to amino acid 158 is about 40% common in ethnic groups.

2.5% have a combo of 158 - 308 which is said to be present in 2.5% of the population. However, this is only regarded as likely to cause a mild deficiency in FMO3 function if both the mutations are on the same chromosome (i.e. from the same parent) .

The paper also lists some drugs that commonly use FMO3 function and the affect a deficiency may have on them.

Meetup begins today

MEBO had no intentions of going live on ustream because it has always been MEBO's intentions to protect the privacy of each person attending any meetup, and Ustream would have compromised this ideal. Unfortunately, this post was published after I left Miami on my way to the meetup, possibly due to a misunderstanding of a conversation regarding someone's request, and I was not aware of it until after the conference was over. Please rest assured that no one logged in to ustream during the conference from our conference room, and no part of the conference was aired live at any time. Sorry for the misunderstanding.

I would like to take this opportunity to clarify that in all future meetups sponsored by MEBO Research, there will be no cameras whatsoever during the conference, particularly for such purposes as a webinar, "virtual reality" lifestreaming or live broadcasting, or video conferences. Everyone is invited to join us to attend the conference in person; and as usual, I will post about the material discussed when I return from the meetup. I have always been very sensitive to the need for privacy of each and every person attending these meetups, and my videos or slideshows of the event or any other post never include a picture of a sufferer who attended without their expressed consent/request to do so because they sought to relay a message to the community.

María
April 17, 2011

The Washington body odor & halitosis meetup begins today at Embassy Suites Dulles Airport. An informal get together is hoped to happen tonight at the manager's reception around 7.30pm. All are welcome.

A conference is expected to begin Saturday at 11 a.m. It's hoped we can network with the internet in some ways.

It's hoped that some livestreaming can be done, though this is not certain. If possible, it would be via Ustream.


Broadcasting Live with Ustream.TV

Other ways of possible interactivity for the conference Saturday :

Via Skype (audio) : Add user meboresearch to your contacts (free)
Via phoneline : USA : (712) 432 1620
access code : 391629#
NON USA : add 001 prefix (check prices. Could be costly)

Cognitive Behavior Therapy : An overview

CBT Concepts (brief overview)
The focus of CBT should NOT be to convince the body odor sufferer that he/she is delusional, since sufficient scientific testing has not become available to diagnose ALL body odor conditions; but rather, the appropriate focus of the Cognitive Behavior Therapy specific to these conditions should be to assist in controlling anxiety and obsessive compulsive thoughts and behavior, in pursuit of a happier and less stressful life.
Maria

View more presentations from meboresearch.

As opposed to mental health therapy being focused on trying to convince the sufferer that he/she is delusional and told to take psychotrophic drugs normally used to treat patients suffering from psychosis, there are some experts in the mental health field that are shifting toward a Cognitive Behavior Therapeutic approach that helps the patient learn to discern and interpret social situations in a manner which both the therapist and the sufferer explore together, and helps the patient modify behavior based on the revised and improved cognitive thoughts.

It is the opinion of this author, who is a sufferer and not an expert, that since not all human beings can detect certain degrees of odor while others can, a sufferer can lead a happier, more productive life by overcoming the common "generalization" process some tend to develop.

To better explain myself, I would like to give a analogy. Let's take the case of a baby in a crib who feels something furry next to her and it feels nice and soft, so she pets it and it feels good. But all of a sudden, it bites her. For a couple of nights in a row, not knowing it's a rat, the same happens, until the baby begins to fear the furry creature. Then one day, the mom who's wearing a fur coat goes to carry her and when the baby feels the soft fur, she becomes highly anxious and downright panicked with fear of the mom's fur coat, and pushes the mother away. Under no circumstances does the baby relax enough to let her mother come close to her to nurture and care for her as long as she has that evil fur around her. She may also generalize this emotional reaction to a friendly dog or cat, or any other furry creature.

Well, the same tends to happen to sufferer. Even though not everyone may detect the odor a sufferer may be giving off, as discussed in a previous post in this blog, Do they smell me or not?, the fact that 2 or 3 different people reacted adversely to the sufferer's odor does not mean that everyone detected it. However, it is so profoundly upsetting to the sufferer to become aware of having this seemingly uncontrollable condition, that when this happens a few more times, generalization takes over. The sufferer eventually becomes recluse, as he or she is completely convinced that everyone at all times detect the odor, when perhaps it is not the case.

Cognitive Behavior Therapy for body odor conditions should address the generalization process and the consequent self-depriving behavior the sufferer resorts to in terms of employment and social life.

This 8 slide PowerPoint presentation in no way could even begin to replace actual therapy, which instead is an experiential process that takes time and is under the direction of a trained expert. Nonetheless, since so many sufferers have been traumatized with being unfoundingly diagnosed with Olfactory Reference Syndrome (ORS)who later test positive for Trimethylaminuria (TMAU), I have decided to portray the more effective alternative treatment that some sufferers are beginning to tell us has been working for them, slowly but surely, as long as they stick to the therapy.

It is important to keep in mind that all sufferers who have tested positive for TMAU, have at one point or another been told by their family and physicians that it is all in their heads. And TMAU is only one of the FMO3 metabolic deficiencies that produces odor, experts believe there are more that need to be further researched, and this is what MEBO Research is initiating. As determined by the American Psychiatric Association [APA], who is planning to list ORS in the "Appendix for Further Research” as opposed to the more serious classification originally sought by some in the mental health field, more tests need to be done to rule out other causes as well before one can arrive at the Olfactory Reference Syndrome.

I hope this brief powerpoint encourages sufferers to seek mental health therapy, and each one has the right to discuss with one's therapist before treatment begins on the first visit about whether he or she will use this treatment plan.

Best of luck to all.

María


María de la Torre
President and Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

Skype group chat with the Washington DC 2011

TO OUR INTERNATIONAL COMMUNITY (including the US)

We are hoping to be able to let those members of our international community who can go on the internet join in the meetup for FREE in some ways. One way we will be with a Skype group live call, which also has a chat feature. Anyone wishing to join this call will require to have a headset or computer speakers, and a microphone (built in on your computer, webcams, or separate microphone attachment). Hopefully, you would be able to ask questions or comment during the Q & A session of each in this group Skype call.

Note : The usual US Bi-weekly phone conference line will also be available to dial into the meetup.
USA : (712) 432 1620
access code : 391629#
NON USA : add 001 prefix

Privacy : If concerned about privacy, it is best to set up a new skype account using false details etc., and forward that username to us at meetup@meboresearch.org.

In order to do this, you would need to install Skype in your computer by Friday night. This is the way to do it:

1. You can install the free Skype program using this Link
2. click on the "Join Skype" button in the upper right of the page.
3. If you don't already have a Skype account, you can create one using whatever name you like, your username on any forum would be good, but any other you prefer would be fine.

Once installed, or if you already have a Skype account, please follow these steps:

1. click on Contacts on the upper right menubar
2. Click on Add a Contact
3. Add contact Username: meboreserach and then click on "Add." This will generate an invitation to MEBO, and you will then be accepted by MEBO into the conference group. I think there might be a limit as to the amount of people that can be part of a group, possibly 25. We will continue to accept new group members as long as it is accepted.

DEADLINE FOR JOINING THE SKYPE CONFERENCE CALL!
Saturday, April 9th at 11:00a.m./EDT

It is imperative that anyone wishing to join the conference call do so before 11:00a.m., Eastern Daylight Savings Time (EDT) on Saturday, April 9th, because once the conference has begun, your call will not be answered. If you call after 11:00a.m., a very annoying telephone ring will interrupt the conference and others won't be able to hear the call. We will try to program it so that no calls will be able to ring in after 11:00a.m.

It is therefore suggested that you install Skype and join the group today, Thursday, or Friday, AND JOIN THE MEBO GROUP (as per instructions above) to have it done in advance. We won't have time to accept members on Saturday as we eat breakfast as a group and begin our meetup.

You may call in anytime on Saturday between 10:30a.m. and 11:00a.m., even though the session won't begin until 11:00a.m, and you do not have to speak. There will probably not be someone there to talk until 11:00a.m. You might just hear silence or people talking in the background. This way, the circuits won't get busy with everyone calling in at the same time around 11:00a.m.

For those who can't call in, don't worry. We will do all possible to record the whole conference, and all the visual PowerPoint presentations, documents, and links used, will be posted in this blog.

María

María de la Torre
President and Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

New TMAU paper by New Zealand test lab

Click to read TMAU paper

We have mentioned before that there is a laboratory in New Zealand that tests for trimethylaminuria in urine using NMR (very expensive testing equipment) Canterbury Health lab in Christchurch.

This week staff associated with the lab have published an overview of trimethylaminuria which is available on pubmed and the whole overview can be read for free.

New Zealand overview paper on trimethylaminuria

Whilst there appears to be no new information, it does consist of a good quick overview of TMAU, particularly of the biochemical test procedures.

Washington DC Meetup 2011 National Cherry Blossom Festival

Thankfully, the cold has not destroyed the Cherry Blossoms, and we'll have the opportunity to enjoy them at our meetup this weekend.

Hope to see as many people at the meetup !

See here for 5 day weather forecast

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I am so looking forward to our Washington DC Meetup this weekend, and we only have a few days before we begin our journey. I am looking forward to meet with everyone and would love to get the opportunity to speak with each person individually at some point of our meetup.

I would like to announce that Dr. Elizabeth A Shephard, a renowned expert in FMO3 and TMAU in London, who has written many papers on these topics has been kind enough to give us a powerpoint presentation, giving us a very easy to understand explanation of the genetics of TMAU. In addition, Dr. John Cashman, who is always telling us that he is happy to help, has given us 5 different documents on this same topic, which I must confess are a little advanced for my lack of knowledge of genetics. So, Dr. Shephard's powerpoint presentation is a great introduction that would hopefully give us some background preparation to better understand some of what is said on the papers Dr. Cashman has given us for our meetup. These past three years, since we began the MEBO Blog, we have published many posts on papers written by Drs. Shephards and Cashman; and they both have always been available to answer our questions and to help us in whichever way they can. Our heart-felt gratitude will always be with them.

In addition to these two very important contributions to the conference part of our meetup on Saturday, April 9th, that begins at 11:00a.m./EDT, we will have a presentation by Dr. Cheryl Fields on Social Security Disability benefits in the US and the rights of employees who suffer from uncontrollable body odor conditions, and another presentation on Bromhidrosis by Glenna and Gloria. Neither Drs. Shephard and Cashmen, or Cheryl and Gloria can personally attend the meetup, so as result, we are planning on setting up a conference call for Cheryl and Gloria to call in. Since we're working on setting up the conference call, we are going to try to make it an international conference call. All the particulars have not been arranged yet to set this type of call, so please stay tuned for updates.

Nonetheless, after the meetup presentations are done, we will write posts and present these documents in MEBO's blog.

FOR THOSE ATTENDING THE MEETUP

Embassy Suites Dulles Airport

13341 Woodland Park Drive

Herndon, Virginia

USA 20171

Tel: +1-703-464-0200

Fax: +1-703-464-0210

To Book your Suite, click here

As you arrive at the hotel or wherever you are staying in the Washington area,

please call me at 786 228-6880

and I will let you know where we are. This is MEBO's phone number in the US that goes directly to my cell phone. Most of us will be arriving on Friday, April 8th from all over the country, and hope to all be present in time for the Manager's Reception where we can share a special bonding moment from 5:30pm to 7:30pm as we sip on our complimentary alcoholic and nonalcoholic complimentary beverages before we go out to dinner as a group.

Breakfast will be served Saturday morning until 10:30a.m., and our meetup will begin at 11:00a.m. It saddens me to say that the persons from London who we hoped would be able to attend, will not be doing so this year; but I do hope they and others from all over the world are able to call in on the conference call. As with our bi-weekly conference calls that we hold in the United States, any one is more than welcome to just call in to listen without ever speaking.

Hope to feel the unity of those present at the meetup as well as all sufferers from around the world that will join us from afar, as we also feel very close to all the experts who have given of their time and their professional works to support us.

María

María de la Torre
President and Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)