MEBO RESEARCH, INC

THIS BLOG IS NOW CLOSED

2011-12-26T01:53:00.013-05:00

THIS BLOG IS NOW CLOSED
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What is involved in creating an International Test Program

2011-01-25T02:48:00.003-05:00

In keeping with MEBO Research’s focus of uniting sufferers from all corners of the globe with experts so that no one will ever have to feel the humiliation and isolation of living with uncontrollable body odor, a great deal of work has gone into paving the way and building a foundation to create an International Test Program. It is no wonder that an international test program such as this has never been done before because it is most certainly not financially profitable, and only committed volunteer hours, weeks, months, and years of hard work can make it come to fruition. MEBO Research is a non-profit organization that has no income other than donations received from time to time. All the work that has been accomplished so far has come from the hearts and dedication of its volunteers. MEBO’s efforts and commitment will not cease until any and all sufferers anywhere in the world have within their grasp the means to understand the cause of the problem through proper testing, and to receive the proper medical treatment necessary to manage it.

It is no wonder that an international test program such as this has never been done before because it is most certainly not financially profitable, and only committed volunteer hours, weeks, months, and years of hard work can make it come to fruition.

Three and a half months ago, MEBO and Eliapharma Services Inc., decided to create an International Test Program that would conceivably lead in the long term toward obtaining research grants in hopes to learn more about the causes of the various body odor conditions and to find treatment and a cure. We were fully cognizant of the fact that it would take a great deal of time, a significant financial investment, mostly initially made by the lab Eliapharma, and a great deal of volunteer work to develop such a program. Contrary to MEBO, Eliapharma is a for profit business. However, while they are looking more toward long-term goals, they are keeping in mind that we don’t have much money, and that we need to keep the price of testing as low as possible. With this in mind, MEBO and Eliapharma decided to begin our International Test Program initially with TMAU Urine Testing, and hopefully progressing to other tests and research projects.

While the lab was performing all the preparations and calibrations necessary to accurately run the test, MEBO Research began the long and arduous process of setting up the shipping service with negotiated FedEx shipping rates and complying with international documentation requirements. Little did we know just how extremely complex and involved this process would be. I must say that FedEx has been extremely instrumental in guiding and training me in this endeavor, as they have not only worked on a discounted shipping rates plan for us, in spite of the across the board rates increase in 2011 of most major shipping carriers, but they have also provided me with many hours of training on the very complex international shipping requirements, since our aims involve almost every country in the world, and each has its own import/export laws, taxes and duties, homeland security programs, etc.

So far, I have spent countless hours, weeks, and months preparing documents required by the North American Free Trade Agreement (NAFTA, involving Canada, US, and Mexico), Dangerous Goods declarations forms (since the kit carries Hydrochloric acid), declarations forms on contagious/non-contagious biological samples (since the kit returning to Canada will contain urine), Certificate of Origin from the each manufacturer of each item included in the kit (such as gloves, vials, HCl, shipping boxes, ice pack, ziplock bags, etc), Power of Attorney forms allowing FedEx to serve as Brokers for MEBO and Eliapharma when needed, Agreement to Maintain Books and Records outside of Canada form, and other forms as well. These are the only the forms needed for NAFTA, which also meets the requirements of many other countries, but as we progress to other countries, there will be additional forms required. Each form needs to be filled out according to strict specifications, and FedEx has been very instrumental in showing me how to do each one.

Once this foundation is firmly established, we will be able to grow in leaps and bounds, and expand beyond those boundaries that have always prevented our international community from uniting and from letting our presence and our needs be felt in the scientific, medical, and political arena.

As a result of such complicated and involved procedures, we have currently only begun shipping kits domestically, within Canada from where the lab sends out the kits. Now that almost all the documents seem to be up to standards, we will soon begin shipping to the United States and Mexico, and very shortly thereafter to persons on the waitlist from Guatemala, Colombia, Argentina, Peru, Ecuador, Venezuela, Poland, Spain, Finland, Portugal, Macedonia, and Australia, to name a few. So far, it has taken us over three months to establish a strong foundation upon which to build this program. I have been very cautious and meticulous each step of the way because it is imperative that the forms are filled out exactly as required to avoid fines, or in the worst case scenario, to prevent Customs from destroying the samples, resulting in the sufferer having to repeat the test involving another choline load and sample collection, freezing and shipping process. I have committed to do everything in my power to ensure that this will not happen. I continue to proactively look for any possible form and documents I may need to fill out to ensure that the requirements of Customs Agencies of all the countries we will ship to will be fully satisfied.

I do apologize if this initial process of our new International Test Program seems to be slow moving, but I believe doing this process carefully and correctly would represent building a solid foundation for us to flourish upon. Once this foundation is firmly established, we will be able to grow in leaps and bounds, and expand beyond those boundaries that have always prevented our international community from uniting and from letting our presence and our needs be felt in the scientific, medical, and political arena. I firmly believe that this is the way to accomplish this goal successfully, building a strong foundation, one document at a time, one country at a time, one test at a time. We are heading in the right direction thanks to everyone who has signed up to be a part of this process. Participation and support in this program is greatly appreciated for the greater good.

María

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Exciting changes in Mental Health Field re Olfactory Reference Syndrome

2011-01-07T02:42:00.003-05:00

RAISING AWARENESS CAMPAIGN

I am very happy to say that I have received, and by extension our whole community has received, an email copy today of the OCD Center of Los Angeles Newsletter from the Clinical Director, Tom Corboy, MFT, with great news for the body odor community. Tom has created a web version of this email for better access to it by everyone. The part of this Newsletter that is of interest to the body odor community is the bottom of the page, "Proposed DSM-5 Changes for OCD and Anxiety Disorders." Tom is informing us not only of, “some very exciting changes at the OCD Center of Los Angeles” but also in the American Psychiatric Association regarding the classification and listing of Olfactory Reference Syndrome (ORS).

As some of us might remember, there was a movement of a group of mental health professionals this past summer of 2010 to include ORS in the in the American Psychiatrist Manual of Mental Disorders as a delusional condition, thus implying a state of psychosis. See the posts in this blog, “Olfactory Reference Syndrome published in PubMed.”

Well, I’m delighted to say that today’s email from Tom informs us, “…that the American Psychiatric Association [APA]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. Moreover, ORS has now clearly been redefined by this LA Center and other Mental Health facilities in the United States, as being “an Obsessive Compulsive Spectrum Disorder with a strong anxiety component. As such, it belongs in the new Anxiety and Obsessive-Compulsive Spectrum Disorders category.”

This is great news for our International Body Odor Community! As a result of this change in categorization, we will no longer be accused of being psychotic, or schizophrenic or delusional because of our life-altering social anxiety produced by having a body odor condition. This negative former categorization was potentially very detrimental for the sufferer in any future litigation case or even employment possibilities.

In the new category, ORS falls on the neurotic vs. psychotic realm, and treatment will be more geared toward helping the sufferer cope with anxiety and panic attacks, and to help reduce reclusive behavior, as opposed to trying to convince the patient that they are being delusional.

THIS IS WHAT WE NEED!
THIS IS WHAT WE FOUGHT FOR
WITH OUR RAISING AWARENESS CAMPAIGN!

Our Raising Awareness Campaign approach was launched with the help of the survey provided to us by Dr. Jennifer L. Greenberg, PSY.D., of the Massachusetts General Hospital and Harvard Medical School. Dr. Greenberg invited all the members of our community to participate in a survey to hear 'our side of the story,' and many of us filled out this survey. In addition, the online emails and comments we wrote in response to online articles written by various News networks also clearly explained the lack of scientific basis the psychosis ORS diagnosis had, which was based on the varying olfactory capacity of family, friends, and therapist. A post in this blog, entitled, “Raising Social Awareness in the Mental Health Field” depicts an email conversation I had with a representative of the OCD Center in Los Angeles. We emphasized how detrimental it was to try to convince a sufferer that their reality wasn't real simply because these individuals couldn't smell it.

We wrote over and over again how not everyone has the same olfactory capacity to detect scents, and scientific tests need to be developed to establish the presence or absence of odorous compounds in a sufferer perhaps detected only by a certain percentage of society before ever considering that the condition is delusional. As a result of all this effort, the outcome was APA classifying and listing ORS in the "Appendix for Further Research” listing.

The reader may refer to this blog’s post, “Reply from Dr. Jennifer L. Greenberg, PSY.D., RE Survey”, in which she acknowledges that,

body odor concerns are understudied and not very well understood at this time...We are very hopeful this will lead to a collaborative effort that will help us all better understand the varying types of body odor concerns and those who suffer.

As a direct result of our survey participation and Raising Awareness email campaign, Dr. Greenberg consequently shifted her opinion on the treatment approach and classification of our condition, as she was quoted on an ABC News article on ORS,

A delusional disorder is someone who has absolute conviction, they're 100 percent convinced that they are emitting an offensive body odor," said Jennifer Greenberg, a clinical research fellow at the OCD and related disorders program at Massachusetts General Hospital and Harvard Medical School.

While many delusional patients are treated with antipsychotics, Greenberg said, "What we are starting to think more about is that the disorder presents like disorders that are closer to obsessive compulsive disorder."

Our campaign was very successful in achieving this final change in classification, THANKS TO EVERYONE WHO PARTICIPATED! If we had not taken action, it could have potentially been "written down in stone" that sufferers are delusional, and that's a scarry thought!

The Raising Awareness Campaign is a very valuable and powerful tool, and if each sufferer found his or her comfortable way to participate in it, all body odor sufferers would become very effective in being better understood by the medical community and hopefully we will achieve the research we so desperately need.

THANKS TO ALL WHO PARTICIPATED IN THE SURVEY AND EMAIL CAMPAIGN!

María

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Where we've been and where we're going

2011-01-02T02:44:00.012-05:00

What has MEBO's volunteer staff
been up to in 2010?

The strong outpour of support these past few years by so many sufferers and experts in our international community has been most inspiring. Even though no one in MEBO’s staff or other volunteers have ever received compensation of any kind (monetary or otherwise) from MEBO for the countless hours invested, much has been accomplished. We are indeed a community united by a common goal – to find a cure for all types of unusual and uncontrollable body odor throughout the world, and we’ve only just begun.

As the year 2010 comes to an end,
we can reminisce on "days gone by."
A special thanks go to,

Our expert overseeing MEBO’s activities, Dr. Irene Gabashvili,

Our Technical Consultant for writing the automated MEBO’S TMAU Test Program Requisition Form, setting up a platform for future surveys and reports, and who took the initiative to design and provide Raising Awareness Flyers for all sufferers from around the world to print and distribute in doctors’ offices, school and work bulletin boards, libraries, etc. , as recommended by other pro-active sufferers. He has also offered to do additional projects for our community next year, including a MEBO Store in our new Charity website,

MEBO’s Director of Public Relations, Glenna Gonzalez who has made the arrangements for our upcoming Washington DC Meetup in April 2011 and is currently writing a Raising Awareness paper to be submitted to journals for publication, which Glenna will share with us in a presentation at the Washington DC Meetup. Along with a few other members of our community, Glenna is a strong supporter and participant of our bi-weekly conference call in the US,

The College of Law at Florida International University, whose Legal Clinic offered pro-bono services to register MEBO as a non-profit organization in the United States, and produced all the required documentation for IRS Form 1023, to apply for 501(c)3 Charity, which was submitted on December 16, 2010.

The experts in the US and the UK, including but not limited Nigel Manning, Principal Clinical Scientist who performs most TMAU tests in the UK, Dr. John Cashman, a leading expert in flavin mono-oxygenase enzyme genetics at the Human Biomolecular Research Institute (HBRI) in San Diego, California, in addition to other experts have written much appreciated professional letters, papers, and interviews for our blog.

All the volunteers who have participated in MEBO’s Raising Awareness Campaign by telling their stories in home-made videos or writing their stories.

All sufferers from around the world who participated in special TV programs or other recorded programs to promote raising social and medical awareness of body odor conditions, and who organized meetups around the world, including the Thames Festival Meetup.

Below is a list of some of the activities MEBO Research has been involved in during the year 2010, and our goals for the year 2011:

Year 2010’s ongoing efforts
to unite experts and sufferers
to promote research:

Set up and initiated MEBO’s International Test Program with Eliapharma Services, Inc, (a for profit) research lab in Canada that has offered us low rates for TMAU urine testing. We have already begun testing using domestic shipping within Canada, but are still working with FedEx for a Country-to-Country rate system that best fits our needs, as well as to ensure that the various Customs’ documentation requirements of most countries are met.

MEBO's first annual Meetup held at Nashville, with a written presentation paper from Nigel Manning, “TMAU – diagnostic testing at Sheffield Children’s Hospital” specifically for this meetup.

MEBO Research, Inc. was incorporated in the State of Florida on April 21, 2010 as a Not for Profit Organization.

On December 16, 2010, IRS received the 501(c)3 application Form 1023 for MEBO Research to obtain Charity status.

Interview with Dr. John Cashman of HBRI in San Diego

Nigel’s letter to medical doctors explaining TMAU testing and paper on TMAU to raise awareness in the medical community.
Sufferer strong participation in MEBO’s Raising awareness Campaign with Raising Awareness Flyers, writing articles for journals, and publishing videos in our blog made by sufferers from many parts of the world.

Year 2011 future goals
to unite experts and sufferers
to promote research:

MEBO-Eliapharma begins testing the approximately 50 people currently on waitlist, and expand to the rest of the Western Hemisphere

Support Eliapharma's efforts in pursuing research in the grant seeking process targeting the Canadian National Institutes of Health, local universities, and private pharmaceultical companies.

MEBO Test Program is proactively working with renown experts on setting up its TMAU Test Program with a lab located in the Eastern Hemisphere in which a doctor's orders would not be required and which would support future research - similar to what is being set up in the Western Hemisphere with Eliapharma Services, Inc.

MEBO's Second Annual Meetup in Washington DC on April 9th and 10th.

Open a MEBO Store to raise funds

Continue with our Raising Awareness Campaign by writing to the various School Boards in the US and UK recommending guidelines to school faculty and administration on how they can assist and support students who presents with body odor - referring them to the letter to doctors and TMAU write up written for us by Nigel Manning noted above, and to the online National Institutes of Health pages on TMAU, and referring the students to this blog for testing options and support group forums. Our Spanish community volunteers, and members of other languages forums, such as the Italian and Polish communities, who have been in communication with MEBO on a regular basis can help us spread this same information to their respective countries as well.

Expand communications with experts and sufferers from all parts of the world by establishing relations with members of all body odor forums and experts from as many countries as possible.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

MEBO and Eliapharma now offering single sample TMAU urine test for $80 plus fees and shipping

2010-12-22T19:01:00.006-05:00

See Elipharma's website, "News and Events" Pages

On Friday afternoon, December 17th,The Public Health Agency awarded Eliapharma Services, Inc., the Permit to import Human pathogen(s) into Canada. Shortly thereafter, I began to notify the 43 people already on the waitlist for the TMAU Urine Test through MEBO Research and Eliapharma, to inform them that they could fill out the application form.

MEBO-ELIAPHARMA TMAU TEST PROGRAM APPLICATION

This English and Spanish versions of this application was designed by MEBO Research's Technical Consultant, who volunteered to donate countless hours of intense work day in and day out on this holiday season, and I'm certain you will agree with me that he has done a very professional and impressive job indeed!

We have received an overwhelmingly enthusiastic response, and I'm doing all I can to keep up with the demand, and it's been challenging to get to everyone on a timely basis. I have been informed by FedEx that most major shippers will be having their annual rate increase in January 2011, and that their rates are subject to change until purchased. I also notice that their fuel surcharge have also increased as the gas prices have been increasing at our local gas station.

For this reason, Eliapharma has offered us yet another option to encourage all sufferers of unusual and uncontrollable body odor to test. As originally posted in this blog, this lab has offered two samples per kit for $110 plus fees and shipping costs, with the option of including up to 4 more samples per kit at $60 each. Well, now Eliapharma is offering yet another option of testing with only one sample for $80 instead of two samples for $110, representing a savings of $30.

Hopefully, this will be particularly helpful for persons who live in countries further away from the lab in Canada resulting in higher shipping charge, and with not very favorable currency exchange rates. Nonetheless, anyone interested in participating in this program before the rates go up can fill out the application, and be placed on a waitlist with no obligation. I will try to clear the waitlist on a first come, first served basis as quickly as possible, as I keep in mind that the shipping rates will increase soon.

At the same time, it is a holiday season, and we look forward to enjoy this season with our loved ones. For those wishing to hold a conference call on any specific day of the holidays, please let me know, and I'll contact the ladies that customarily organize them.

Wishing everyone a Merry Christmas, Happy New Year, and whatever else anyone celebrates in during Holiday Season.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

IRS has received MEBO Research's 501(c)3 Charity Application

2010-12-16T14:54:00.008-05:00

I am happy to announce that according to the FedEx Tracking system, the U.S. Internal Revenue Service, E. O. Application Receiving Department has received MEBO Research’s 501(c)3 non-profit (Charity) application. This very long and involved application, IRS Form 1023, was done for MEBO on a pro-bono basis by The Legal Clinic of the College of Law of Florida International University This same Legal Clinic had also filled out the necessary documents to incorporate MEBO Research, Inc. in the State of Florida, on April 21, 2010. It is with profound gratitude that I thank this institution, my Alma Matter, for extending this pro-bono service to us.

According to www.form1023help.com/id4.html, which explains how the IRS Processes Exemption Applications work, the final disposition of the applications received in the fiscal year 2007 were 79% Approvals, 2% Denials, and 19% Others. This article states,

(“Others” includes transfer to National Office, failure to provide additional information when requested, and status granted different from status applied for.)

If the IRS denies your application, they must provide you with a written explanation of the facts, law, and argument upon which their decision is based, as well as an explanation of your appeal rights.

In the very professional manner in which MEBO’s form was filled out by the Legal Clinic, I am very confident that we should not have any problems. My sincere gratitude goes to those persons who gave donations specifically for this purpose to raise the $750 fee required to register MEBO as a Charity in the United States.

The benefits of this status would be that it would put MEBO in a much better position to obtain grants and donations because they would be tax deductable to the donor, and to relieve MEBO from having to pay many taxes as well at the end of each fiscal year. Therefore, we expect a good return on our investment in the long-term.

Updates on this application process will be published on this site.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

305 724-5107

Video Testimonial of Crystal Y

2010-12-10T02:06:00.001-05:00

There are sufferers who are very proactive in raising social awareness, such as the young lady in this video, and others who tell their story on television networks in the United States and United Kingdom. But I must say, some of my favorites are the “home made” videos done by sufferers in their own homes with their cam cameras sitting at their computers. Those are relatively unrehearsed or coached, and they come straight from the heart.

Here is a video of a beautiful young lady, Crystal Young from the Serendip Body Odor group, from Bryn Mawr College, who just wants to ‘come out’ to us, and to tell us her story. Crystal told me that she would love for others to see her video and is honored to have the opportunity to inspire someone else. These are her words:

Hi María,

I appreciate the amazing feedback on my video! I absolutely do not mind if you post it,...In fact, I want others to see it. I'm honored to have the opportunity to inspire someone else; if I could inspire just one person in the smallest way, that would mean a great deal.

Thank you again and I look forward to connecting with your community as well.

Sincerely,

Crystal Y

I know everyone will enjoy the experience of meeting Crystal in this video. She says that would love to hear from us too, and she gives us her email address, sweetlady2222@hotmail.com in case anyone would like to write to her.

MEBO’s hope is to bring the whole international community together, to unite in sharing with each other so that we can support each other, and when research opportunities come along, there will be plenty of us to help the scientists help us on a voluntary basis only.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Interview : Dr John Cashman of HBRI in San Diego

2010-12-08T12:58:00.008-05:00

helpful links :
CYP
CYP 3A4
DME's
FMO
FMO3

With the interviewee's permission, we have managed to compile a question and answer interview from a recent email dialogue about the enzyme Flavin containing monooxygenase isoform 3 (FMO3) with one of the leading experts in this group of enzymes (as well as expertise in many other human enzymes), Dr John Cashman of the Human Biomolecular Research Institute in San Diego. The dialogue was to try and understand more about FMO3 since sub-normal FMO3 is responsible for genetic trimethylaminuria. Dr Cashman has a long history in TMAU/FMO3 research, especially in the genetic field.
Dr John Cashman medical papers on TMAU/FMO3

We thank Dr Cashman for being so helpful to the TMAU community, and for his long association in research that is directly related to genetic TMAU.

Is FMO3 one of the most widely used enzymes we have ?
Based on the publications in the literature, I think FMO is underrecognized. It is present in adult liver to a great extent, almost 60% of the amount for the major CYP enzyme (CYP3A4) that does most human drug metabolism currently listed in the literature.

Is there a rule of thumb that we can use to know when something in the diet is likely an FMO3 substrate ? (eg. greenfoods, foods with sulfides, etc) It sounds like almost all vegetables, herbs, spices and proteins potentially.
Yes, FMO prefers smaller nucleophilic compounds: Sulfur-, Nitrogen-, Selenium-, and Phosphorous-containing compounds. But not all that contain these heteratom-containing compounds are nucleophilic as the atoms can be in aromatic rings and non-nucleophilic.

Are all (or many) sulfides, amines, and phosphates FMO3 substrates ?
These substrates need to be nucleophilic. Not all sulfides etc are nucleophilic. Phosphines not phosphates, and organo selenium compounds. But the enzyme substrate binding region has some size requirements or limitations.

Do you expect people with FMO3 deficiency could have problems with FMO3 substrates other than TMA ? (including endogenous)
Yes, I think there could be adverse drug reactions as the amines are not N-oxygenated, for example and are not rapidly cleared. There are many drugs that are amines but not enough research has gone into determining if any of these amine drugs are substrates for FMO. My suspicion is that many more than are currently recognized are substrates for FMO.

Is FMO3 the only likely Drug Metabolizing Enzyme (DME) associated with smells ?
I am not sure about this because other DMEs including CYP metabolize amines, sulfides and phosphines.

Can we survive with zero FMO3 function with no obvious problems apart from TMAU?
I am not sure that the experiment has been done in terms of making a FMO3 knock out mouse and looking at the consequences of this. My suspicion is that FMO3 is involved in some important mammalian developmental function that we don't recognize currently.

CYP3A4 seems to be inhibited by a wide range of chemicals which I presume may be constantly updated. We know that indoles inhibit FMO3. Do you think it is likely that more FMO3 inhibitors that are common in the diet are likely to be discovered?
FMO evolved to metabolize plant-derived materials. This was important early on as evolving mammals needed to protect themselves from all the nucleophilic materials in plants. Yes, I suspect there are a few more nucleophiles that avoided this process but I think most are detoxicated (N-oxides and S-oxides are metabolites). The problem may come in as reductases also evolved to retro reduce N-oxides and S-oxides. These may be more efficient and be the source of the problem. Another important issue is that sometimes FMO produces a reactive metabolite that does not inhibit FMO but leaves the FMO enzyme and inhibits CYP.

Endogenous compounds are compounds created in the systemic circulation. Are there any endogenous compounds that are good FMO substrates ? e.g. hormones or neurotransmitters or blood pressure regulators.
We have published that tyramine and phenylethylamine are FMO substrates. We looked at the other major ones and they do not appear to be substrates: Serotonin, Dopamine, Norepinephrine, Histidine apparently are not substrates for FMO3.

Is FMO present in the gut ?
Yes, FMO is in the gut. I think FMO1 and FMO5 more so than FMO3 but this is in a review with Jun Zhang we published years ago.
see: http://www.ncbi.nlm.nih.gov/pubmed/16402899

Looking at the list of inhibitors for CYP 3A4 on wikipedia (eg citrus, echinacea, milk thistle), It looks as if flavonoids are a particular problem for CYP enzymes? I wonder if these compounds could inhibit FMO3 ?
Probably not. But not sure on this one. Most of the CYP (inhibitors ?) in citrus are polycyclic flavonoids. No nucleophilic atoms are present. So it is unlikely non-nucleophiles are inhibitors. There is a report out there that caffeine is a substrate for FMO3. This is wrong. Not an inhibitor either. No nucleophilic centers. There are a number of azoles (ketoconazole) and imidazoles (cimetidine) that inhibit/alternate substrates for FMO3 but these are from nucleophilic groups in the molecule.

It has been hypothesized that if someone has a bad reaction to a drug it is more likely due to a DME enzyme deficiency rather than an allergy. What are your thoughts on this ?
I am not sure of this one. I think most reported adverse drug-drug interactions (DDIs) occur when there is an excess of a drug compared to normal clearance and reasonable therapeutic levels. There is a DOSE-dependence. Often with allergic reactions, dose is not that important and small concentrations can illicit an immune response. Most DDIs reported are related to liver metabolism.

Pepper is a spice that has anecdotally caused bad reactions such as nightmares.
Pepper inhibits gut metabolism and permits things to be more efficiently taken up through the gut. I dont believe this has been examined as a substrate or inhibitor of FMO.

Could there be an FMO connection with intolerance of garlic ?
Lots of people don’t do very well with garlic including me. My father loved it. There are numerous sulfides in garlic. But this is likely complicated because some of these compounds exist as more complex precursor compounds and intolerance may be related to other enzyme systems.

A lot of people on the forums have as one of their many various odors a smell of burning rubber. Could this be a phosphorous compound ?
I think the compound smelled in burning rubber is a sulfur-compound based.

Quite a few in the group feel they have an allergy to penicillin. If this was rather to do with the DME's, could it be FMO3 deficiency ?
I think penicillin is a direct-acting allergen that is probably normally moped up but if someone doesn’t have adequate protein to protect then it reacts with key proteins that illicit an immune response. That is why it may be idiosyncratic. I don’t think it has much to do with DMEs or metabolic bioactivation. However, reaction to penicillin may indicate a more sensitive immune system.

Is smoking bad for someone with a FMO3 deficiency ?
Nicotine is an FMO3 substrate. It is only N-oxygenated about 5% of a dose but it is a detox pathway. Defective FMO3 will cause individuals to be more susceptible to nicotine. It may be that people with defective FMO3 may be more sensitive to the properties of nicotine.

Would it be impossible to follow a ‘low FMO3 substrate’ diet?
Due to the ubiquitous nature of amines and sulfides in the diet, it may be difficult to have a diet free of FMO3 substrates. However, one can try to avoid choline, for example and this may help a great deal. However, it is important to note that choline is essential in development and child-bearing age women need to consume adequate choline if they are contemplating pregnancy.

What do you think the results of this dissertation imply? http://digitalcommons.library.tmc.edu/dissertations/AAI1450285/
I did not read the dissertation but I did read the Abstract. I agree, more work needs to be done especially the role of non-exon mutations of FMO3.

Many people say they smell of many various smells systemically. We wondered if there is a possible FMO3 connection.
Yes, individuals reporting TMAu symptoms report various smells and this has been confirmed by other experts.

We wondered if the following were good FMO3 substrates ?
hydrogen sulfide: probably not
methanethiol: yes
dimethylsulfide: yes
dimethyldisulfide: yes. I believe it is a very good substrate.
ammonia: probably not
mercaptans: Yes, depending on the structure
Any others you wish to mention : Phosphines.

We wondered if the following things mainly in the diet or endogenously are FMO3 substrates ?
amines in diet
sulfurs in diet
phosphorous in the diet
selenium supplement
FMO3 substrates created endogenously
FMO3 substrates created by the gut flora (aside from trimethylamine)
methyls
It is difficult to answer a broad question like this without some specific examples.

There was a recent paper about FMO3 induction. http://www.ncbi.nlm.nih.gov/pubmed/20570689
Do you think it has any potential as a treatment ?
Not 3-MC. This also induces lots of other things and leads to liver cancer induction. I think induction FMO3 is not the real solution to TMAu. And note, in the report, the functional enzyme activity was not "induced" as much as the RNA.

It’s been suggested that Ataluren may be worth trialling for those with FMO3 nonsense mutations http://www.ptcbio.com/3.1.1_genetic_disorders.aspx. Do you think this is an option for investigation and what percentage with TMAU1 have nonsense mutations ?
Very very few individuals with TMAu in our analyses have nonsense mutations. I don’t think this is worth the risk.

A DME expert suggested ingestion of synthetic FMO3 may be theoretically possible but thought the side effects may make it unfeasible. What do you think of this idea ?
We are looking into this. There are many hurdles in this business. I am not sure about side effects of FMO3.

Is there any other ideas you have as potential treatments ?
I have lots of ideas but no money or time to pursue them.

www.meboresearch.com

MEBO and Eliapharma TMAU Testing and future research goals

2010-12-04T21:03:00.015-05:00

Update 5

Each person who tests through MEBO / Eliapharma can feel the pride that comes with being a part of a movement that proactively seeks to find answers and a cure for all types of body odor conditions.

IT is in keeping with MEBO Research's Mission, "to support the scientific and medical communities to perform formal professional research into body odor and halitosis conditions,” that MEBO has chosen Eliapharma Services Inc., to perform phenotype TMAU test (urine test) for our community. As noted in their website, this lab has been involved in Analytical, Bio-analytical, medicinal chemistry, and preclinical and clinical services, for Biotechs, University Research Centers, Institutes, Pharmaceutical Companies, Generic Companies and Hospitals. Consequently, Eliapharma is now in a good position to apply for (and hopefully obtain) research grants from the Canadian National Institutes of Health and/or some of the pharmaceutical companies they have worked with in the past. This process will take time, as much preliminary work would be needed, such as gathering data through testing and establishing a database, initially of TMAU test results and eventually of the various types of body odor conditions, and a great deal of documentation would have to be drafted to support research funding.

Each person who tests through MEBO/Eliapharma can feel the pride that comes with being a part of a movement that proactively seeks to find answers and a cure for all types of body odor conditions. While MEBO and Eliapharma are totally committed to protect the privacy of each person by assigning each person an account number so as never to divulge personal information such as name, address, and telephone or email contact to anyone without prior written authorization if ever needed, we hereby disclose that all test results and answers to voluntary surveys will become part of the database used for future research.

Since Eliapharma is a research lab and our program has research aspirations, the lab can perform TMAU tests and give the results to the person testing without doctor’s order.

Therefore, by signing the agreement and disclosure in the application form, the person testing will be giving his or her expressed written consent for MEBO Research or Eliapharma Services Inc. to divulge only the test results data and voluntary survey information to be shared only with research organizations, such as pharmaceutical companies, university research departments, and any other agency that may have expressed interested in performing in-depth research into TMAU and other causes of unusual and difficult to control body odors.
It is also hoped that those persons testing will also volunteer to fill out the survey created for this purpose. If Eliapharma and this project were not research oriented, we would not be able to perform this TMAU test without a doctor’s orders.

Another reason MEBO has chosen Eliapharma as the lab to work with is because it is the only lab in the Western Hemisphere that is willing to accept specimen from sufferers in Central and South America, as well as from Mexico and other parts of the world.

The TMAU test done through Eliapharma looks for both, Primary and Secondary TMAU, and measures both the TMA levels and the metabolic enzyme function involved in the metabolism of TMA, similar to the way it is done in the United Kingdom. Below is a detailed breakdown of the testing cost:

$110.00/US : Eliapharma charges only $110 for the analysis of 2 separate urine specimen collections per kit. With an additional $60/US, another specimen may be tested (up to 4 additional samples at $60 each). More than one person can participate per kit.This is one economical way to test the whole family (up to 6 different people). For 6 people, the test charge would be $350 ($110 for 2 plus $60x4 =$350)
$30.00/US per kit: MEBO charge $30 for the kit content, insurance for unforseen damaged specimen in transit, currency exchange fees and PayPal fees,
$10.00/US per kit : to cover the $1,000 investment commitment MEBO Research has made to set up the lab for testing (Eliapharma is investing approximately $2,400).
SHIPPING COST : Round trip shipping cost depending on place of residence, which includes ground or lowest shipping cost to send the kit from the lab and priority overnight or 2 day shipping, whichever is lower, for the return kit containing the frozen specimen. This shipping cost will also include any additional fuel surcharge fees or other fees established by FedEx.

Anyone interested in participating in this TMAU phenotype testing and contributing to future research, while we commit to protecting the privacy of your identity, please express interest with an email to, tmautest@meboresearch.com

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

MEBO and Eliapharma TMAU Testing Update 4

2010-12-01T21:02:00.005-05:00

The President and CEO of Eliapharma Services Inc., Samir Nassr, M.Sc., informs us that the Import/Export Permit has not yet arrived at his office, even though the Canadian authorities had informed him that he would receive it by December 2nd. Consequently, we will not be able to begin mailing the kits to the 35 people on the waitlist to initiate our International Testing Program in Canada until we receive it. As soon as we do, it will be posted in this blog, and each person on the waitlist will receive an email inviting them to fill out the application.

I apologize for this delay, and I thank you for your very much appreciated patience. Sometimes government transactions take longer than originally planned.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Washington DC 2011: You can book MEBO’s 2nd Annual Meetup

2010-11-19T22:45:00.013-05:00

If you need assistance in transportation to the meet-up from your home, such as looking for anyone interested in carpooling, or in getting good bus, train, or air fares, please send me an email. If anyone would like to volunteer to get bus and train transportation information to Washington DC to share with us, please let me know, maria.delatorre@meboresearch.com.

MEBO Research 2nd Annual Meetup
Embassy Suites
Dulles Airport Hotel
8th, 9th, 10 April 2011

I'm happy to announce that MEBO Research has signed the contract agreement with the Dulles Airport Embassy Suites for us to hold our second annual Meetup on Saturday and Sunday, April 9th and 10th. The hotel has guaranteed us 20 suites at a rate of $89/night for Friday and Saturday nights, April 8th and 9th, and 10 suites for Sunday, April 10th (to check out on Monday). Bookings can be done online or over the phone using the MEBO Research Group/Convention Code: MER. This same rate will be extended one day prior, on Thursday, April 7th, subject to availability at booking time, for anyone wishing to stay longer. If you wish to stay even longer, please send me an email at, maria.delatorre@meboresearch.com, and I'll try to arrange it for you (no promises).

Room rates include :

Complimentary daily full breakfast per person
Complimentary daily 2-hour Manager's Reception, serving alcoholic and non-alcoholic beverages and snacks
Complimentary airport shuttle
Free self-parking.

MEBO's Director of Public Relations, Glenna Gonzalez, was kind enough to find this hotel, and she personally went to see it for us. She was very pleased with the elegant yet cozy environment that would serve as a welcoming backdrop for our meetup. She fell particularly in love with the Board Room, in which we will be meeting on Saturday to discuss very interesting topics.(More information to follow)

Rates per Suite:
King bed Non Smoking Suite $89/night
Two Double Bed Non Smoking Suite $89/night
Board Room for Saturday,
April 11th, RATE: $300 + 22% Service Fee + 5% tax = $381.00

Room rates are quoted net non-commissionable
and exclusive of (9%) local taxes..

Quoted rates will be offered, based on availability, to meetup attendees 1 days before the above dates.

Special Accounts: MEBO Research

Booking Group/Convention Code: MER

I have verified with the Sales Manager that no funds will be held on your credit card when using it to guarantee your booking. Embassy Suites will only use your credit card to confirmed your reservation. You do not have to pay, your credit card will not be charged, until you check-out after your stay, and there is no cancellation fee up to 6:00pm on the first day of your stay.

Booking options:

1. ONLINE RESERVATIONS: for the $89/night rates

Availability dates: anytime between 08APR2011 thru 10APR2011
Smoking or Non-Smoking
King or Two Beds (double beds), or No Preference

Special Accounts: Group/Convention Code: MBR

2. PHONE RESERVATIONS: In you wish to reserve for the $89/night rate one days before subject to availability, you need to call Reservations at, 1-703 464-0200 or 1-800-HILTONS (1-800-445-8667) and give them the MEBO Research Group/Convention Code: MER If you would like to stay longer for the same rate, please let me know and I'll see if I can get it for you (no promises).

I do hope you can join us! It will be a very worthwhile and meaningful experience for us all! See you there.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Spring 2011 Meetup in Washington DC

MEBO and Eliapharma TMAU Testing Update 3

2010-11-16T11:55:00.008-05:00

DEVELOPMENT OF THE MEBO TEST PROGRAM

For the past three years, since MEBO Research was just a distant dream beyond the horizon, the main driving force that propelled us to pursue this dream was the thought that somewhere in this world, there are sufferers who don’t have any recourse to have access to a test that would help them understand about their body odor condition or a treatment possibilities to cure it, or at least to control it.

Thanks to the volunteer work of various persons in our English and Spanish speaking community, organizational efforts have brought us very close to being a Charity now, and MEBO is almost at the first stages of body odor testing in places that have never had the hopes of seeing testing come to fruition.

In the long run, the MEBO Test Program aims to develop a more complete repertoire of varied body odor related diagnostic tests as well as research projects, under the guidance, direction, and supervision of Eliapharma and MEBO’s Scientific Advisors, in an effort to better understand the multiple causes of body odor conditions and their respective appropriate treatment. We are very fortunate to have the support and counsel of these, our experts, who have always been available and happy to help.

ABOUT ELIAPHARMA SERVICES INC

Eliapharma Services Inc. is a Contract Research Organization (CRO) located in Laval, Quebec, Canada.

Eliapharma Services Inc. has been in business for four successful years providing Analytical, Bio-analytical, Preclinical and Clinical Services for Biotechs, University Research Centers, Institutes, Pharmaceutical Companies, Generic Companies and Hospitals.

When will testing begin?

In order to be involved in the import and export of human specimens (urine or blood), Eliapharma has applied for an Import/Export Permit from the Canadian Authorities. We have been advised that the test kits cannot be mailed out to the 28 people currently on the waitlist to test until this permit has been issued, and the authorities tell us that it should be by December 2nd.

The Human Pathogens and Toxins Act (HPTA)

This laboratory has been classified as a Containment Level 2 laboratory by The Office of Laboratory Security, which outlines Operational Practices under the Public Health Agency of Canada. This Classification is valid for one year, and is described as follows:

Containment Level 2 (CL2)

See Organism Lists

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Ways to raise awareness of Body Odor Conditions in the medical community

2010-11-15T19:06:00.009-05:00

The best way to raise awareness in the medical community is to introduce professional literature written on this topic funded by the National Institutes of Health (NIH), as well as posts and articles written by sufferers with their permission, regarding what it is like to live with this condition.

Below are a few links that the medical community may find interesting. If you are interested in being a part of our Raising Awareness Campaign, you can select any of these sites and print the article to show anyone of your choosing. In addition to showing them to your doctor, you can also leave a copy or two at his or her office's or hospital waiting rooms.

Most of these articles are written or funded by the National Institutes of Health, so it's legal to copy and distribute. MEBO Research's websites and blog are written by sufferers, which also reference professional papers, and we hereby authorize anyone to print any portions of the MEBO Research publications to distribute. However, due to copyright laws, no paper written and published by a professional can be copied or printed without the permission of the author, but it is acceptable to print short quoted excerpts and to reference them. MEBO's website pages do just that; therefore, it is OK to print them.

Copyright Status
Information that is created by or for the US government on this site is within the public domain. Public domain information on the National Library of Medicine (NLM) Web pages may be freely distributed and copied. However, it is requested that in any subsequent use of this work, NLM be given appropriate acknowledgment.
National Center for Biotechnical Information (NCBI)

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=trimethylaminuria Includes Differential Diagnosis and Management
National Institutes of Health, Office of Rare Diseases Research
MEBO Research website : Trimethylaminuria
MEBO Research website : About Metabolic Body Odor

Click on icon to print

You may also print the flyer to post it on bulletin boards at schools, universities, churches, and hospital bulletin boards, etc. It has MEBO Research's name on it with a phone number in case they want additional information. You may print it and place them in strategic places.

Thanks for your participation in this movement.

MEBO Research
maria.delatorre@meboresearch.com

Raising Awareness Campaign Flyers
>MEBO'S Article in the American Academy of Pediatrics You can quote excerpts from this with a link, as some hypothesis are not yet researched, and this post is in pursuit of the much needed research.
1975 Science paper "7% could not smell trimethylamine
Human olfactory psychophysics

1975 Science paper : 7% of population could not smell trimethylamine

2010-11-10T18:51:00.000-05:00

With a systemic body odor problem, including TMAU, it is quite common for the person and their 'loved ones' (e.g. parents, partner, children) to be unable to smell the odor. Speculation as to why this would be varies in the community. Some feel that those close to the person become acclimatized and desensitized to the smell. Others feel that some people are totally anosmic to some smells (specific anosmia). Another theory is a genetic reason, with the 'loved ones' being carriers of the same problem being a factor for some reason.

One can only speculate as to what exactly is happening. There is one published paper of a study in which people's ability to smell a certain group of smells including trimethylamine were tested. Written in 1975, this paper is study of a group of a couple of hundred people, which demonstrated that 7% of the group had difficulty detecting the scent of tertiary amines, particularly trimethylamine.

Apparently trimethylamine is usually detectable at a very lows level in humans, the lowest of 53 odors tested in one study, including mercaptans and hydrogen sulfide.

1975 full paper : 7% of a group have anosmia to trimethylamine

abstract : anosmia to trimethylamine

In another paper in 1990, 11.5% of children could not have their detection of TMA measured, which may indicate an anosmia, but the paper says this may be due to them losing interest in the study.

http://www.springerlink.com/content/jnt300916675x160/

http://www.springerlink.com/content/jnt300916675x160/fulltext.pdf

INTERNATIONAL TMAU TESTING UPDATE 2

2010-10-29T17:02:00.004-04:00

I would like to thank the 21 people who have inquired about MEBO Research's upcoming International TMAU Testing Program with Eliapharma Services Inc. At this time, we have 19 persons confirmed on the waitlist, even before we have completed all the preparations to begin testing. Testing will be done in batches of 60 specimens (two samples per person), and it looks like we'll get the 30 people by the time we are set up to test. This strong support is very much appreciated, and we are that much driven to ensure that we offer everyone the highest quality testing experience.

I am currently finalizing the training program on international shipping provided to me by FedEx particularly regarding the shipping process to and from the Canadian Lab to as many countries as necessary. My 30 years experience in the airline industry has given me significant expertise in international travel involving Customs procedures and now national security concerns. Now, instead of transporting passengers internationally, MEBO will be shipping medical kits and human specimens with some similar procedures but with significant differences. Eliapharma has already submitted the application for the Import/Export Permit from the Canadian authorities.

Eliapharma is setting up the validation process to run the tests. This lab has just received the trimethylamine (TMA) ordered from a chemical manufacturer to test multiple urine samples of persons without body odor conditions by adding controlled levels of TMA in the urine in order to ascertain how long the specimen will remain intact from a frozen state to room temperature before the TMA begins to evaporate to such a degree as to render the test inaccurate. The test will involve the use of a couple of different stabilizing acids to see which works best preserving the specimen for a longer period of time. We consider this to be a very important measure for us to take in order to ensure the quality of the specimens and accuracy of the tests. Meanwhile, the lab is also setting up and validating the equipment with the required trial runs, etc.

These and other procedures are very important steps that we are committed to taking, since we want to extend this testing opportunity to as many people from distant countries while securing an accurate and high quality testing process. We want to ensure that we use the proper kit supplies to protect the specimen, the proper shipping plan for timely delivery, and to have in order all government required documentation, such as Commercial Invoice, Airway Bill, return prepaid shipping label, and others (depending on countries involved), so that the specimen is not delayed in transit or at Customs, in order that it does not become corrupt and then consequently give inaccurate results. This process is also very user-friendly for the person testing, since all the documentation required by the respective governments will be prepared and prepaid in advance by MEBO Research.

I am a firm believer in establishing a good foundation in any and all projects I undertake, and this very important setting-up process is no exception. I always prefer quality over quantity to provide a flawless process; and if we hurry through this stage, we open ourselves to paying dearly for it in the long run with inaccurate results and damaged specimens.

Therefore, after discussing it with the president of Eliapharma, we believe that we will be in a good position to begin shipping out the kits on November 18th to those persons who have put their names on the waitlist. If you are interested in signing up to have your TMAU phenotype (urine) test done through MEBO Research and Eliapharma, you may send MEBO an email at tmautest@meboresearch.com, with no obligation to participate. In order to best calculate shipping costs, I would need to know the country, address (with postal code), and phone number of anyone requesting a kit. I will send you an email quoting an all inclusive rate once all preparatory arrangements have been finalized.

If you are still interested in testing at that time, you may fill out and submit the application with your payment in full through PayPal. An optional online survey will become available to you that you may fill out for future research purposes, though participation is strictly on a voluntary basis. MEBO and Eliapharma commit to strict confidentiality codes of ethics. Upon receipt of payment and the application, a kit will be mailed to you with clear instructions on how to do your choline load as well s your specimen collections and handling. All the necessary documentation, such as Customer Invoice, Air Waybill, and your return postage label will be included in the kit.

I appreciate your patience and support.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

INTERNATIONAL TMAU TESTING UPDATE

2010-10-20T17:39:00.005-04:00

As mentioned in previous posts on MEBO Research’s International TMAU Testing Program, MEBO has been very proactively pursuing low cost international shipping possibilities of the TMAU test kit from Eliapharma Analytical Services Inc. to other countries, initially in the Western Hemisphere, while Eliapharma is obtaining an import/export permit from the Canadian authorities.

I AM VERY HAPPY TO ANNOUNCE

that even before all the arrangements have been finalized, we already have 14 persons on the waitlist to participate in this program

from Canada, Ecuador, Mexico, Peru, and the United States.

So far, a number of positive developments have been established, such as,

There are no additional fees for internationally transporting dangerous good in quantities of less than one liter, such as hydrochloric acid (HCl), governed under United Nations Class A Code UN 1789. HCl or another similar acid will be shipped in the kit to stabilize the samples,

There are no additional fees for transporting urine specimen to test for chemical compounds, since it is unregulated if declared to be non-contagious : Infectious substance affecting humans, UN2814 Category A (United Nations Classification for Transportation & Shipment of Biological Materials), which would apply to infectious substance limited to viruses and bacteria, and UN 3373 substance including viruses, bacteria, fungi. A disclosure statement would have to be signed by the person whose urine is being analyzed,

There will be no Duty or Taxes incurred for the specimen kit, with and without urine. It has been classified by the World Trade Organization with a Harmonized Code (HC) Number 9018.90.8000, which describes the commodity as an, “Instruments and appliances used in medical, surgical, dental or veterinary sciences, nesi, and parts and accessories thereof MFN Duty Rate: Free.” Nonetheless, MEBO would still like to double check to verify with each country that the kit will be mailed to for additional confirmation.

In other words, it appears that the only shipping cost involved may only be the FedEx negotiated shipping rate, which is still in the works. I will be having another conference call tomorrow with my FedEx accounts executive and an expert in international shipping procedures involving so many countries to obtain more information. I will do all possible to ensure that there will not be any other "hidden fees," though I realize that since there are so many countries involved, we won’t know for certain until we actually begin the process. However, all efforts to obtain information and clarification in advance will be exhausted in this preparatory stage.

Anyone interested in putting herself or himself on the waitlist may do so by sending an email to, tmautest@meboresearch.com with no obligation to participate. PLEASE NOTE WHAT COUNTRY YOU’RE IN ON THE EMAIL. Once all arrangements have been finalized, we will contact you.

María de la Torre
President and Executive Director
MEBO Research
maria.delatorre@meboresearch.com
www.meboresearch.com

Spring 2011 Meetup in Washington DC

2010-10-17T17:52:00.003-04:00

WHERE WILL MEBO RESEARCH HOLD IT'S
SECOND U.S. ANNUAL MEETUP?

Today we had a very good conference call in the US. Although I was unable to join the call until later, I did manage to do so when they were discussing MEBO Research’s first annual meetup held on March 2010. The callers had been discussing where and when we would hold the next US meetup in 2011. (See this link for full coverage of the 2010’s meetup in Nashville.) There were a couple of locations mentioned, and we ended up leaning toward a “Washington DC Meetup in April 2011.”

There are many reasons why DC would be such a great place to meet.

LOCATION AND TRANSPORTATION: It has a great Metro (subway) system that would allow us to not have to rent a car. It is serviced by three airports, the Ronald Reagan Washington National Airport, the Dulles International Airport, and the Baltimore Washington International Airport. Also, Amtrak offers service to the Washington area from many places in the country. In addition, many people from the Northeastern US were unable to make last year’s meetup in Nashville, and the DC location would make it easier for them to attend this year. We were discussing maybe holding next year’s meetup further west, maybe just east of the Rocky Mountains to be closer to our members on that side of the world. But for this year, it seems that DC is the spot.

HOTEL: Since the Embassy Suites was such a hit in last year’s meetup, another Embassy Suites was unanimously recommended for the DC Meetup in Spring 2011. We are going to look at one near the Dulles International Airport, since it would probably be much less costly than one near central DC. The hotel’s spacious lobby with its cozy waterfalls gardens makes for a welcoming and laid-back ambiance where one feels relaxed and more at ease talking to others in the group.

HOTEL ACCOMMODATIONS: As we did last year in Nashville, MEBO Research will negotiate a group corporate rates and a Governor’s Suite. The accommodations would include complimentary airport shuttle and shuttle service to the Metro, daily full breakfast buffet, and the 2 hour Manager’s Reception with complimentary alcoholic and non-alcoholic beverages and snacks – something similar to last year’s accommodations in Nashville (though the room rates may vary slightly). We won’t know what room rates will be yet until MEBO makes the arrangements with the hotel.

SIGHTS AND LANDMARKS: The best part of Washington DC is found in “The National Mall and Memorial Parks,” where one can enjoy many beautiful and meaningful sights free of charge. The Mall is an open-area national park in downtown Washington DC administered by the National Mall and Memorial Parks unit of the National Park Service. This Mall encompasses the area between the Lincoln Memorial and the United States Capitol, with the Washington Monument almost mid-center. Along the sides of this approximate 1 mile (1.6km) long and 400 feet (120m) wide area are the Smithsonian Museum buildings with priceless collections, including the Air and Space Museums, Natural History Museum, American History Museum, and many more. And let us not forget the moving experience one feels while visiting the Memorial sections including the Vietnam Veterans Memorial, the National World War II Memorial with the Reflecting Pool that divides them (seen in the Forest Gump movie), the Korean War Veterans Memorial, and the District of Columbia War Memorial.

We are still in the initial phase of organizing this meetup with the exact dates yet to be determined, but we do hope everyone from around the world will join us in this very special event, so this will be the first of the many more posts yet to come. Looking forward to meeting everyone.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Washington DC 2011: You can book MEBO's 2nd Annual Meetup

More about TMAU testing through MEBO Research

2010-10-11T20:37:00.010-04:00

MEBO Research have been looking to source a trimethylaminuria testing lab for a while for a few reasons. A primary aim is to provide the body odor and halitosis community with a reliable source of TMAU testing directly, without a doctor's referral, at the least expensive price without a loss of quality. Currently so few labs test for TMAU, and the medical system often puts obstacles in the way, which can prevent those wishing to test getting access to testing. MEBO hopes to prove how many people have some issue with TMAU, with a result that local testing units will add TMAU to their list of metabolism tests.

We have had difficulty identifying labs who would be interested in helping us, especially at an international level. The bigger labs seem not interested, probably due to thinking there is not a market. Eliapharma was contacted because it was noted that a pioneer in analytical testing in the USA, Dr. Orval Mamer, is their Scientific Advisor. His name was noticed from the list of experts who attended the NIH TMAU Workshop in 2002, talking about analysis of choline testing. Dr. Mamer was also involved with this paper about TMAU phenotype testing from 1999.

Eliapharma is an analytical service set up in 2007 by Samir Nassr, who has a long history and expertise in this industry, as can be seen from his bio : Eliapharma team. Although they have not previously offered a 'clinical' testing service as such, they do have the equipment and expertise to test such samples. Samir has kindly offered to help us with this project. The samples will not initially be regarded as 'clinical' specimens. They will be testing the TMA and TMA-oxide in each sample as if for a trial, rather than as a diagnostic service, but will be tested to the same clinical standard and the results given will enable determination of TMAU1 & TMAU2 to the current general clinical reference ranges.

What will be tested :

Trimethylamine level
Trimethylamine-n-oxide level
Creatinine

TMAU phenotype (urine) testing is usually done by any of these 3 methods : (from this link)

Head-space gas chromatography (GC) or GC-mass spectrometry
Mass spectroscopy
Proton nuclear magnetic resonance (NMR) spectroscopy (state of the art, but very expensive machine)

API4000 for TMAU testing

Eliapharma has a mass spectrometer that will be used for our TMAU testing. They use an API4000 by Applied Systems as seen on this page : TMAU testing machine. The technique used will be Liquid chromatography - mass spectrometry

Currently we are working out the logistics of the testing procedure. It is standard procedure in this type of testing for samples to be tested in 'arrays' to make it economically viable, since the labor costs and materials needed make testing a batch at one time the sensible way to test. We chose 30 people in an array to start with, to keep costs down per person but not have too long to wait to reach 30 people (cost per person = number of samples per batch)

Once we have arranged the shipping and packaging, test-kits will immediately be sent out to those who wish to test, and the samples will be stored at Eliapharma until the 30 people testing have been reached, while MEBO Reseach holds the funds. Once the test is run for the 60 samples collected from 30 people, MEBO will pay Eliapharma in full to run those tests.

Eliapharma is charging $110 for 2 samples per person, and the approximate cost of the kit is currently $30. MEBO is to pay around $1,000 for the cost of materials in the start-up procedure. This is to be paid to Eliapharma from a surcharge/donation of $10 included in the total amount paid by the person testing. It is currently estimated that after 100 people, this fee will be paid off. After that, MEBO will keep the $10 as donations to MEBO Research, a non-profit organization, to either pay for costs involved in testing or in running the charity. So the current estimated price of testing is $110 + $30 + $10 + shipping.

Since Eliapharma is in Canada, thus mostly shipping internationally, and the kits will likely include a small amount of HCL (or another acidic preservative) to stabilise the samples, we are currently working on the best shipping arrangements with the shipper and US and Canadian Customs Agencies. Shipping will be done by FEDEX to begin with. Shipping cost will be included for the round trip. We will always be looking for ways to make shipping the most cost-effective possible.

We will keep you updated with the setting up process.

TMAU Test with Eliapharma through MEBO Research

2010-10-05T23:06:00.021-04:00

As noted in our introductory post, International TMAU Testing in Canada : Special Group Rate," this program's primary aim is to systematically provide testing as affordably as possible to all sufferers throughout the world, most of whom currently do not have any testing opportunities whatsoever." By doing so, we can also obtain data from those who voluntarily opt to take a brief survey (not required to do so in order to test) that may be used in future research into body odor conditions. If people from many countries who have different lifestyles and diets participate in this program, we will obtain valuable information about the variations in TMAU sufferers of different cultures, as well as those who test negative for TMAU.

Since Eliapharma is located in Canada and MEBO Research, Inc. is based in Miami, FL, US, we are making the necessary arrangements to test anyone from either of these two countries, while we also focus on working with Customs Agencies of Mexico, Colombia, and Argentina as a starting point. Once this service is up and running, we will then move on to other countries that don't have labs to test for TMAU.

In order to comply with all the shipping laws of the two governments' involved with each shipment, much preparation and documentation must be arranged in advance. Since the kits shipped from Eliapharma in Canada will include two bottles of 4mL hydrochloric acid (HCl), special handling preparations and the proper documentation must be ensured in advance by MEBO in order to comply with each country's requirements. In addition, since the specimens returned to Eliapharma consist of body fluids, even more protocols need to be adhered to in order to comply with each government's laws and guidelines. What seems to be a very simple process is actually a monumental task when crossing international lines.

Nonetheless, MeBO is a proactive patient advocacy group, and no trouble is too much trouble that would deter us from ensuring to the best of our ability that all sufferers from around the world have access to TMAU testing.

We are most grateful to FedEx for offering the complementary services of one of their customer service trainers to show us how to work through the vast sea of codes and international laws and regulations using their very comprehensive program, FedEx Global Trader Manager Demo.

It is MeBO's intentions that most of the documentation be done by MeBO in advance so that the person testing would only have to be concerned with following the enclosed choline/TMA load instructions, collecting the 2 specimens, adding the enclosed HCl to each specimen, freezing them along with the ice packs, and putting them in the original box to ship them back to Eliapharma with the prepaid postage and fully completed international documentation.

It's as simple as that, VOILÀ!

We will not turn down anyone wishing to test if it is within our power, so no matter what country you are in, please send an email expressing your interest to tmautest@meboresearch.com with no obligation to participate. PLEASE NOTE WHAT COUNTRY YOU'RE IN ON THE EMAIL. Once we receive the negotiated shipping rate information from FedEx, we will contact you.

International TMAU testing in Canada & USA : Special Group Rates

2010-10-02T11:26:00.034-04:00

MEBO Research, Inc. and Eliapharma Analytical Services, Inc. in Laval, Québec, Canada have entered into a joint undertaking creating a low group rate Testing Program initially for TMAU phenotype (urine) test, and eventually for TMAU genotype (genetic testing) and other body odor related tests. The TMAU urine test will be for TMA & TMAO as well as creatinine, and will be done using mass spectroscopy. A physician referral is not needed to be tested. Eliapharma is charging $110 for 2 urine samples test per kit, a $30 fee for the kit, plus a $10 donation for MeBO to invest in its Mission and Strategies as described in MeBO’s website. This $150 cost includes a kit containing 2 glass tubes, two 4mL of 6N HCL, gloves, ice pack, an insulated container, and a box for round trip shipping. In order to be able to provide such a low group rates, it will be necessary for the lab to store the frozen samples and to wait for samples from 30 persons be collected. Each person can collect two samples at different times before shipping them back to the lab.

FedEx assures us that they can offer 48 hour shipments from anywhere in the world.

In an effort to create a “One Stop Shopping” experience for those members of our international community to be able to test comfortably, MEBO Research is having negotiations with FedEx, and initially with the Canadian and US Customs Agencies to arrange low roundtrip shipping rates of the kit to the person testing with a return shipping label, International Airway Bill, and Commercial Invoice. This will allow the person testing to not have to deal with these concerns. These negotiated international shipping rates, which are normally costly (precisely because the samples need to be shipped to arrive within 2 day) are yet to be determined. The shipping rate will be based on MeBO’s earned discounts (bulk rates). After this initial shipping phase is established between and within Canada and the United States, MeBO will then proceed to begin consulting with Customs Agencies of other countries, one country at a time in an effort to expand this service to all countries around the world that would have at least one sufferer wishing to test. FedEx assures us that they can offer 48 hour shipments from anywhere in the world.

Since shipment of samples from countries that are at a greater distance from Canada than the US may be more costly, it is MeBO’s intentions to pursue grants that would further assist us in providing free testing opportunities in the name of research. Anyone wishing to test is invited to participate in an OPTIONAL and VOLUNTARY confidential survey so that we may acquire data in an effort to establish a platform for research. These efforts are very much geared toward our primary goal – to research into all types of body odor conditions of persons with a positive and a negative TMAU test result.

The following highlights the benefits to this program:

A doctor’s referral is not necessary since we are collecting data for future research
Two vials of urine specimen per kit, which may be collected on different days, per person for $150 plus shipping
The speed of receiving test results depends on how quickly 30 persons submit their samples
The more people test, the lower the shipping cost
Confidential test records will be used to pursue research grants from international private and government agencies.
Those persons who test will be the first to be invited to participate in grant-funded studies, providing additional testing free of charge. This will be on first come first served basis based of date tested
This program’s primary aim is to systematically provide testing to all sufferers throughout the world, most of whom currently do not have any testing opportunities whatsoever

Once the phenotype testing is underway, MeBO and Eliapharma intend to add genotype testing as well, hopefully, also with a good bulk rate, depending on the volume of phenotype (urine) tests already performed. We hope to progressively add other Body Odor related tests to our list of tests, so as to offer all sufferers from around the world a worthwhile, low cost “One Stop Shopping” to help each of us arrive at a proper diagnosis of each and all body odor conditions.

Anyone interested in participating in this program may email tmautest@meboresearch.com to place yourself on the waiting list with no obligation. As soon as the shipping costs are established, it will be announced in this blog and MeBO’s website, and we will get back to you when the testing process is initiated. As soon as arrangements are made with the Canadian and US Customs Agencies, we will contact another Customs Agency of whichever government sufferers asks us to consult. It will be on a first-come first-serve basis. So no matter what country you are in, if you wish to test, please send an email to tmautest@meboresearch.com with no obligation to participate. PLEASE NOTE WHAT COUNTRY YOU'RE IN ON THE EMAIL. Once we receive the negotiated shipping rate information from FedEx, we will contact you.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Thames Festival Meetup 2010

2010-09-19T15:58:00.000-04:00

As I mention in previous posts, our meetup at the Thames Festival was a special occasion that provided us with a magnificent setting in which to meet very special people. There is such beauty in the distinct uniqueness in each of us just waiting to be released, and this meetup served as a place where our inner selves broke through in a liberating outburst of laughter, contentment, and peace. Stressed and tormented faces turn into a reflection of pure joy in this process, especially when after discussing our conditions with each other, we moved on to enjoy the festivities that surrounded us.

On Sunday, we were more actively involved in the events of the Festival as we walked from one end to the other. Although we had plenty of time to discuss protocols and experiences, we made it a point to just share the ‘here and now’ and to feel free to be moved by the music, laugh out loud at our friends' wittiness, feel total pleasure in the company of friends, and to simply rejoice in the moment. It was great fun to be in the company of people with the same ailment, and to feel as if though the condition was nonexistent, even if just for a while.

During the meetup one hears comments such as, “…it gave me a chill being amongst people who have the same problem and who understand…” A meetup acquires a special dimension when after much discussion of various odor-management protocols as well as the sadness and frustration that inherently come with these conditions, a second phase follows promoting healing by simply having fun together!

Invariably, this and other meetups turn out to be healing experiences, especially for people who rarely get the opportunity to feel such freedom. I hope this video gives every reader the opportunity to experience this liberation with us.

María de la Torre
President and Executive Director
MEBO Research
maria@meboresearch.com
www.meboresearch.com

MEBO'S Article in the American Academy of Pediatrics

2010-08-28T16:52:00.042-04:00

The editor of the American Academy of Pediatrics (AAP) website and Newsletter has confirmed that they are publishing an article on Fecal Body Odor and Trimethylaminuria written by MEBO Research in their Adolescent Health Web Site, which has approximately 600 members who have expertise in adolescent medicine. The editor has asked MEBO to also craft patient/parent messages for their public/consumer site. She also tells us that maybe we could publish part 1 in this coming issue and part 2 in our spring issue, but this is still to be decided. MEBO plans to do many more of these activities with other professional journals.

In this article, MEBO intended to raise awareness of TMAU, since it's the only body-odor related test in the medical field that we know of, which tests specifically for a particular body odor condition. However, our intent was to also have the concept of Fecal Body Odor published again in a professional journal. We find it very interesting how so many persons diagnosed with TMAU don’t complain so much of having a fish odor, but primarily a fecal body odor. We believe that this concept needs to be seriously addressed and researched to see if we can find the cause of it, and subsequent on-target treatment of it.

After much investigating and researching online and at the library, the MEBO staff has been able to find only two articles on Fecal Body Odor in professional journals - a question and answer section in the Journal of the American Medical Association (JAMA) written in 1972 and 1973 by Dr. Eugene T Baldridge, MD, Dr. Richard Dobson, MD, and Dr. Theodor Roseburry, MD. Unfortunately, in spite of Fecal Body Odor being the predominant complaint of sufferers from around the world, there have not been other professional papers published substantiating or documenting anything at all about fecal body odor. Now, 37 years after the 1972/73 question and answers were published in JAMA, is when the American Academy of Pediatrics has kindly offered to publish MEBO Research’s article on Fecal Body Odor and Trimethylaminuria. In an attempt for recognition of this condition and as a call for help from the medical community, MEBO provides information on these conditions as a patient advocacy group providing information from the patient’s perspective.

We are most grateful to Dr. Ronald Hines for his contribution to this article, and for this priceless opportunity provided to our community by the American Academy of Pediatrics. We hope to continue to receive the same warm welcome from other professional journals of the medical and scientific community as we continue on the path of our Raising Awareness Campaign.

The Staff
MEBO RESEARCH, INC.
http://www.meboresearch.com/
staff@meboresearch.com

MEBO Research Raising Awareness Campaign Flyer

2010-08-27T21:49:00.019-04:00

As part of our Raising Awareness Campaign, the MeBO Technical Consultant has designed flyers that anyone can copy and print to then take them to doctor's offices or hospital waiting rooms, libraries, schools, College and University notice boards, where there are plenty of posters about various illnesses, such as heart problems, diabetes, etc. Once MeBO has more funds, this and other similar flyers will be used for advertisement in medical journals and other magazines that would include it as a charitable gesture.

***Click here to print your copy***

María de la Torre
President and Executive Director
MEBO Research, Inc.
maria.delatorre@meboresearch.com
www.meboresearch.com

Cross-Over Reactions : Possible cause of TMAU2?

2010-08-25T07:11:00.010-04:00

INVITATION TO PARTICIPATE IN AN INFORMAL STUDY

On Cross-over Reactions

Between Fructose Malabsorption and high choline foods ingestion
With resulting Secondary Trimethylaminuria

Disclosure: This is a data-gathering preliminary measure
to present to experts to promote research.

Hi Everyone,

Some of you may remember me from the old support group web site. For the last 2 years or so, I have been researching and experimenting and have come upon a possible cause of TMAU2. I think it was in January ’09 that I posted a message about Fructose Malabsorption as a possible cause. That was true, but it turns out it was only PART of the equation. Fructose and fructose-type sugars are metabolized by a liver enzyme called Aldolase B. It turns out there are other sugars also metabolized by the Aldolase liver enzymes. When we think of sugar we think sweet - but that’s not always the case. There is a type of sugar in red meats and milk called Sialic Acid, and the monosaccharide sugars are also metabolized by the Aldolase liver enzymes.

I was doing great on the low-sugars diet and then started taking a new medication for an ulcer called Sucralfate IS. After about a week, the odor flared up and it took me another week to start suspecting the medication. I called the pharmacy to see if the ingredients contained any sugars. The pharmacist at first said no (also there were no high choline ingredients), but then I asked about monosaccharides. She looked it up and discovered that Sucralfate is a monosaccharide sugar, hence the bad reaction.

But also there is what I call a cross-over reaction with TMAU. What that means is,

Those of us who cannot metabolize these sugars have an odorous reaction, but when we eat very high choline foods like egg yolks and fish, then the odor flares up 10 times worse! But when I have no sugars that I can’t metabolize in my system, my odor goes completely away and I can eat fish, seafood and egg yolks with no bad reactions whatsoever. There is obviously a connection and I have a theory why, but that will have to be researched biomolecularly.

[Cross-over reaction definition by an online medical dictionary: A reaction that occurs in blood testing when a disease agent reacts to the specific antibody for another disease agent. a reaction which occurs when surface antigenic determinants on different molecules of quite different sources are identical, so that antibody directed against one antigen also reacts with another. Immunology A partial reaction or 'recognition' of an epitope by an antibody generated in response to another antigen]

I’m sure I don’t have all the pieces to this puzzle yet, but may have enough to help those of us with this particular disorder.

Diet for the Study

Below is a diet plan for those of you who want to help with this research and see if this is your problem also. If you do the diet, please post your results.

*WARNING:*If you are diabetic, hypoglycemic or have other medical problems, check with your doctor before starting this diet.*

If you do the diet, please post your results.

For the first 2-3 weeks OR until you get complete odor relief, eat/drink only from the list below:

Aspartame sweetener (hard to find pure aspartame - don’t use aspartame mixed with other sugars)
Xylitol sweetener (can get at a health food store) Be watchful about how much Xylitol you consume. It has a natural laxative effect, even for people with normal digestive systems.
Oats (plain-add your own sweetener, butter)
Sugar free breads, tortillas, crackers or wafers (don’t’ overeat wheat products; wheat also contains some fructose)
Sugar free cereals like Shredded Wheat (ALWAYS CHECK INGREDIENTS OF PROCESSED FOODS)
Pasta (no sauces - just coat with olive oil and salt to taste)
Spinach, turnip greens (Brassica rapa L.), mustard greens (Brassica juncea), green beans, wax beans, green and black olives
Chicken (no lunch meats or hot dogs)
Turkey (also, no lunch meats or hot dogs)
Egg whites
Butter/margarine in moderation
Olive Oil, Canola oil
Calcium supplement with vitamin D, like Nature’s Bounty, that is sugar free. This diet is very low in calcium. Also, take a good sugar free multi-vitamin if you can.
Citrus fruits are the lowest in sugars of the fruits, so for the sake of nutrition, a small orange, tangerine, ½ grapefruit, lemon or lime no more than once a day would be best.
Use non-dairy creamer sparingly
Aspartame or Xylitol to sweeten
Coffee
Tea (No herbal teas at this time; most herbal teas contain fructose)
Diet colas
Flour
Cocoa powder
Salt and pepper, but no other spices at this time

After (if) your odor is gone, add these high choline foods: egg yolks, fish, seafood, chicken and turkey livers/gizzards, cauliflower and asparagus.

If you get foods that are processed or canned, make sure they do not contain sugars or “natural flavors” which contain fructose and/or soy. Also, little or no soy. If you get rid of the odor but then have a bad reaction to something, be sure to post your findings. If you must have sugars or are taking a medication that contains one of those sugars, be sure to eat low choline during that time.

NOTICE: Do NOT use Splenda. It is sucralose, [In the European Union, it is also known under the E number (additive code) E955 ], which is a derivative of sucrose, one of the fructose-type sweeteners. Also, be watchful about how much Xylitol you consume. It has a natural laxative effect, even for people with normal digestive systems.

***Remember, this is a work in progress.***

Best wishes to all of you!

Lisa M.

Original Source, Body Odor Support Forum

Carnitine : not just choline to be avoided in TMAU diet

2010-08-24T13:15:00.000-04:00

Those interested in TMAU are very aware that choline is to be kept minimal in the disorder, since gut bacteria can metabolize the choline, with one resulting metabolite being trimethylamine (TMA). However it may be often overlooked that another compound that can result in TMA production is carnitine.

The 'avoidance' diet strategy for TMAU mainly involves :

1. Keeping anything that can result in TMA to a minimum
obvious examples :

* Choline (remember this is an essential nutrient though)
* Any food with high TMA-oxide content, since the TMA-oxide is broken down to TMA in our gut (e.g. seafood)
* Carnitine

2. Avoiding anything that inhibits the FMO3 enzyme
So far, only indoles in cruciferous veg have been proven to inhibit the enzyme. It's possible more foods are to be discovered.

In humans, most carnitine in the diet is derived from lysine and methionine, so anything high in these 2 amino acids will naturally result in the most carnitine. This shows how difficult it is to avoid, given that lysine and methionine are in many foods. 2 common main sources are red meat and in the whey portion of dairy foods. But red meat is the most abundant food by far, as can be seen in the table in this page : Office of Dietary Supplements info on carnitine

For those that feel only trimethylamine causes their odor, perhaps carnitine is worth further investigation to see if this could be a secret source of TMA in your diet. In general, it seems that those on a strict vegetarian or vegan diet may have very little carnitine in their diet, but it must be remembered that lysine and methionine are essential amino acids.

http://en.wikipedia.org/wiki/Carnitine
http://ods.od.nih.gov/factsheets/carnitine.asp

Letter for doctors RE TMAU and Testing from Nigel Manning

2010-08-17T00:07:00.005-04:00

Nigel Manning
Principal Clinical Scientist
Dept. Clinical Chemistry
Sheffield Children's Hospital
Sheffield

email : Nigel.Manning@sch.nhs.uk

Nigel Manning, Principal Clinical Scientist, who performs the TMAU tests in the UK through NHS and most private companies, has informed us that anyone in the world can test for TMAU through him as long as “the samples are sent by express courier to arrive within 2 days or as soon as possible.” You would need to contact him to determine if more than 2 days are acceptable in your specific case. He gives us the letter below for us to print and give our medical doctors to instruct them on how to collect specimen for the TMAU test.

His fee is £134 + tax or approximately 160 Euros, subject to £/Euro or £/other applicable currency exchange rate (the patient is responsible for shipping charges to get the specimen to the lab in a timely manner). This includes additional testing for dimethylglycine if the TMA test result is normal.

CLICK HERE FOR PDF FILE TO PRINT

Dear Dr. ........

Thank you for your enquiry regarding the test for Trimethylamine which we perform
routinely here at Sheffield Children's Hospital.

To test for Trimethylaminuria (TMAU) we require a 20cc urine sample and a doctor's
referral letter or request form.

For intermittent odours, which may be associated with ingestion of certain foods (or in
women may occur in the pre-menstrual period), it is important to collect this sample at the
time of the odour (this may necessitate ‘loading’ with the foods known to produce the
odour eg beans, eggs, liver).

The type of urine sample we would require is known as a 24 hour urine collection - during
this period urine is collected into a 2.5 litre container with approximately 10cc of ‘5M’
Hydrochloric acid to acidify the sample and stabilise the trimethylamine. (This is the same
sample collection as for a urine Calcium test).

The doctor's surgery should then send us a 20cc portion of this sample for us to measure:
1 Trimethylamine
2 Trimethylamine-oxide.
The sample must be sent by express courier to arrive within 2 days or as soon as possible.

The current price for this test is £134 + tax or approximately 160 Euros* (this includes
additional testing for dimethylglycine if the TMA test result is normal).

We should be able to return the results with interpretation to your doctor within 3 weeks of
receipt of the sample.
If you wish to phone me to discuss this test or sample please don't hesitate.** I've attached
some more information about TMAU which I hope you may find useful.

Yours sincerely
Nigel Manning
Principal Clinical Scientist
Dept. Clinical Chemistry
Sheffield Children's Hospital
Sheffield S10 2TH
UK
Phone: 0114 271 7307
Fax: 0114 270 6121

*subject to £/Euro or £/other applicable currency exchange rate
**Office personnel usually only speak English

INTRODUCTION TO TRIMETHYLAMINURIA [TMAU]

Disorder nomenclature / synonyms:
- Trimethylaminuria (TMAU)
- Primary TMAU (TMAU1) (Inherited FMO3 deficiency)
- Secondary TMAU (TMAU2)
- Fish Odour Syndrome (FOS) (Fish Malodour Syndrome)
- Primary FOS / Secondary FOS
- Flavin-containing mono-oxygenase type 3 (FMO3) deficiency.

Trimethylaminuria (TMAU) is a disorder defined by the excessive urinary excretion of
the volatile tertiary amine trimethylamine (TMA). This reflects an increase in body fluids
which results in TMAU patients exuding the odour of rotten fish (similar to ammonia), as
the excess TMA is excreted in sweat. Body odour of rotten fish is not unsurprisingly
accompanied by the same odour on the breath of TMAU sufferers.
TMAU is therefore a potentially distressing condition of social exclusion resulting in
depression and other psychological problems. Patients may start to show signs of the
condition at various ages from infancy to adulthood depending mainly on whether the
disorder is inherited or acquired.

TMAU1

The inherited form of TMAU is known as Primary TMAU or TMAU1. The result of a
faulty recessive gene, TMAU1 patients have impaired activity of a liver enzyme known
as FMO3 (flavin-containing mono-oxygenase type 3). FMO3 oxidises chemical
compounds and has a wide range of substrates including many drugs. TMA is oxidised
to the non-odourous TMA-oxide (TMO) by FMO3 which can then be excreted. TMA
itself is generated in the large intestine by bacteria which break down compounds such
as choline (in meat, liver, eggs and beans/peas), carnitine (meat) and TMO from
seafood (hence TMA from rotting fish).
TMAU1 therefore results from FMO3 deficency with an increase in the ratio of TMA to
TMO in urine which can be used for diagnosis.
Due to the low specificity of FMO3 and the large number of drugs detoxified, TMAU1
patients may suffer from adverse drug reactions (eg with codeine; tamoxifen;
ketoconazole; nicotine; cimetidine; ranitidine; phenothiazine). Hypertension may result
from ingestion of red wine and cheese (and chocolate), which produce the
neurotransmitter tyramine, another FMO3 dependent compound. Many people suffer
from migraines associated with tyramine containing foods and perhaps FMO3
deficiency may explain some of these cases, but overall this demonstrates the adverse
medical consequences as well as the odour related psychosocial aspects.

TMAU2

The acquired form of TMAU is covered by the term Secondary TMAU or TMAU2 where
TMA excretion is high even though FMO3 activity is normal.
Most TMAU2 patients produce too much TMA from intestinal bacteria due to excessive
bacterial growth of TMA-generating species. The TMA burden is so great that FMO3
oxidation is not enough to convert all the TMA. This problem may be exacerbated by
intestinal structural problems such as ‘blind loops’ or post operative complications.
TMAU2 usually presents in adulthood although children have been known to acquire
excessive TMA-producing bacteria with the resultant odour.
The diagnosis of TMAU2 depends on the detection of increased urinary TMA and TMO
with a normal TMA/TMO ratio indicating normal oxidation by FMO3.
Some TMAU2 patients may have liver or kidney disease which results in a TMAU1-like
pattern of excretion. Importantly this may also occur with a urinary tract infection (UTI)
which results in TMA being produced directly into the urine giving a false positive result.
Whenever results suggest TMAU1, therefore, UTI must always be excluded by
microbial analysis before a TMAU1 diagnosis is confirmed in a follow-up sample.

Therapy

Treatment of both TMAU1 and TMAU2 is based on diet to restrict the sources
(precursors) of TMA and antibiotics to eliminate the TMA-producing bacteria. TMAU2
can in fact be cured by eradication of the excess bacteria, although stubborn colonies
may regrow to excess and require further courses of treatment.
TMAU1, as a genetic defect, cannot be completely cured although therapy (dietary and
antibiotic) can successfully control the patient’s TMA to a less odourous level. Patient’s
residual enzyme activity is variable depending on the specific mutation and as such
trials with the cofactor riboflavin have been tried with some success. Milder TMAU1
patients can, however, reduce their TMA to almost normal values with just diet and
periodic antibiotic therapy. Other forms of therapy are based on the neutralisation of
TMA chemically. Skin creams with a comparatively low pH (5.0) may neutralise TMA
which is alkaline. This creates a non-volatile salt of TMA which lessens any odour and
can be washed off by the patient later. The other solution lies in deodorising tablets
such as ‘activated charcoal’ or copper-chlorophyllin complex (marketed as ‘Nullo’).
These ‘internal deodorants’ have been successfully used for many years and would be
ideal for more severely affected TMAU1 patients.

Testing for TMAU

We offer a urine test for trimethylamine (TMA) and the oxide of TMA. The technique
used is gas chromatography – mass spectrometry. This enables us to diagnose TMAU1
and TMAU2. A positive result is always followed up – with a routine second test after a
report of the initial findings. The turnaround time for the test is currently 4 weeks or less.
A GP or physician referral is essential, but we can offer advice by phone or email about
how to start the process.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

1999 Letter in the Lancet about 'periodic' Trimethylaminuria

2010-08-16T19:00:00.001-04:00

Of the handful of researchers who have investigated trimethylaminuria, probably the most research into the physical side of the odor problem (rather than genetic research) has been done by Dr Stephen Mitchell of Imperial College in London (Dr SC Mitchell TMAU papers on pubmed), most of his research being in the late 80's and 90's (very little over this decade)

In this 1999 letter to the Lancet, he comments that in his experience, many sufferers who have TMAU are likely to be 'carriers' who only smell periodically when their FMO3 enzyme is called upon to deal with bigger loads of TMA. He explains that they have no 'reserve capacity' as normal people do. It is interesting he chooses to reply to this medical paper done by Zschocke et al, since this paper demonstrated that TMAU can include those with 2 copies of common 'mild' FMO3 variants, again being a transient form of TMAU.

TMAU, if ever discussed at medical school, is likely still regarded as a disorder affecting those with 2 mutant copies, which typically is very 'severe' and rare.

Over the past decade we have encountered many patients who have odour problems on a mild, transient, and periodic basis. These otherwise healthy individuals are presumably heterozygotes, or compound heterozygotes, who can cope with the daily burden of trimethylamine (TMA), but have little, if any, reserve capacity when stressed by other factors and may fail to metabolically breakdown trimethylamine. To raise the general awareness of this disorder and reiterate that it “is not merely a rare recessive disorder but rather a spectrum of phenotypes of transient or mild malodour” is important, but it is also imperative to realise that fish-odour syndrome is not a simple genetic problem and that heterozygotes (carriers) may have to endure a transient and more elusive form of this complaint initiated by various, less obvious, and more ephemeral, factors.

Dr Mitchell 1999 Lancet letter about TMAU

1975 Science paper : 7% could not smell trimethylamine

2010-08-13T03:45:00.000-04:00

One can only speculate as to what exactly is happening. There is one published paper in a which they tested people's ability to smell a certain group of smells including trimethylamine. Written in 1975, It's study of a group of a couple of hundred people demonstrated that 7% of the group had difficulty detecting the smell of tertiary amines, particularly trimethylamine.

Apparently trimethylamine is usually detectable at a very lows level in humans, the lowest of 53 odors tested in one study, including mercaptans and hydrogen sulfide.

1975 full paper : 7% of a group have anosmia to trimethylamine

abstract : anosmia to trimethylamine

In another paper in 1990, 11.5% of children could not have their detection of TMA measured, which may indicate an anosmia, but the paper says this may be due to them losing interest in the study.

http://www.springerlink.com/content/jnt300916675x160/

http://www.springerlink.com/content/jnt300916675x160/fulltext.pdf

MEBO Campaign: Raising Awareness in the Medical Community

2010-08-06T14:32:00.010-04:00

If you have been diagnosed with genetic TMAU
and wish to be part of MEBO Research's 'Raise Awareness Campaign'
particularly in the medical community
please contact maria.delatorre@meboresearch.com

One of the priorities of MEBO Research is to raise awareness of systemic body odors, especially in the medical community, including the more established TMAU condition to the yet to be discovered and defined causes of fecal body odor. As a result, MEBO Research is undergoing a campaign to reach out to physicians through medical publications. MeBO has consequently been invited to write an article for the monthly Adolescent Health Newsletter of the American Academy of Pediatrics. The target readers of this newsletter, which is only available by online subscription, are pediatricians.

In the first part of the article, we plan to write about the need for recognition of, and research into systemic body odors, and to make the reader aware of TMAU. Since many persons diagnosed with TMAU also claim to have fecal body odor in addition to or instead of fish odor, we believe it is important to also raise awareness of the need of further research to understand what else could be at play in this and other non-TMAU body odor conditions.

AAP adolescent health website

In the second part, we wished to raise pediatricians' awareness of the current expert views and advice on treatment for TMAU. We therefore asked Dr. Ronald Hines if he would write this part, which he has kindly agreed to do. Dr. Hines is a Professor of Pediatrics and Pharmacology, Medical College of Wisconsin and Associate Director, Children’s Research Institute, Children’s Hospital and Health Systems, Milwaukee, WI. He has a background in TMAU/FMO3 research, including the discovery of FMO1 being the main form of fetal FMO, which can be present in the liver of humans up until age 18. His studies have "...emphasized two major enzymes systems, the cytochrome P450 and the flavin-containing monooxygenase gene families."

We hope to make the third part of this article a 300 to 400 word testimonial from a sufferer who has tested positive for genetic TMAU (Primary TMAU), and who has been symptomatic in childhood and adolescence, even if the diagnosis came much later in life. The testimony could be written in whichever style is most comfortable for you, such as how you would normally describe your symptoms to a doctor, and briefly describe their response including suggesting it's all in your mind.

Additionally, if you prefer (though not required), you can give a voice to all children and adolescence who may not know how to put what they’re going through in words. It could portray (though not necessarily so) the humiliation of ridicule a child encounters, the pain and suffering produced by frequent denial and negation from family members, and the frustration encountered when physicians are not familiar with body odor related conditions not resulting from a serious well-known illness, and the feeling of complete helplessness one feels at such an early age. A pseudonym could be used. The idea is to make pediatricians aware of how difficult and stressful it is to get a diagnosis, and also what odor problems the person can have (depending on what they say). Hopefully the whole article will make the reading pediatricians aware it is not that rare a problem.

If anyone would like to be the testimonial volunteer, we would be very grateful if they contact us at :

maria.delatorre@meboresearch.com

The AAP newsletter is subscription only, however we plan to post it on our blog if we get permission from the testimonial volunteer and the AAP. Also, if we get a few testimonies, we may publish some of them on the blog over the months as testimony for anyone to read, if we get the permission of the writer.

We hope this endeavor will be informative to pediatricians of the known resources of diagnostic testing as well as the applicable odor-management protocol available to treat his or her patients who present solely with fecal, fish, or any other type of body odor. We also hope it will promote support for more research.

María de la Torre
President and Executive Director
MEBO Research, Inc.
maria.delatorre@meboresearch.com
www.meboresearch.com

Transdermal sensors : in theory could monitor body odors

2010-07-07T20:42:00.001-04:00

Lindsay Lohan has just been jailed for breaching her probation in alcohol related cases. It was interesting to read that part of her probation involved wearing a transdermal sensor that can detect alcohol vapors from the skin. The sensor was tagged to her leg. Such a transdermal detector (SCRAM bracelet/anklet) is shown in the link below :

http://www.alcoholmonitoring.com/index

This shows the possibilities for detecting body odors in the future through transdermal detectors. Unfortunately no-one is likely to manufacture one soon, but at least we know the technology seems already possible. Of the ways to monitor body odors, this would likely be one of the best options in an ideal world.

Raising Social Awareness in the Mental Health Field

2010-06-19T18:03:00.002-04:00

Below you will find a copy of two emails, one from the OCD Center of L.A. in which they explain and attempt to justify the ORS diagnoses they give their patients, and the other email is my rebuttal, as I attempt to raise social awareness in the mental health field.

It is my hope that by raising social awareness, sufferers who seek mental health therapy get the proper diagnosis and treatment needed. Who knows, perhaps by raising social awareness in this manner, we might be able to obtain grants for research in the development of proper diagnostic equipment for persons who present to their doctors with body odor conditions.

I apologize for the lengthiness of my rebuttal, but I believe all the points I raise need to be raised. Please feel free at any time to copy and paste any and all parts of my rebuttal if it helps you also raise social awareness.

From: OCD Center of L.A.
Date: Wed, Jun 16, 2010 at 10:38 AM
Subject: Olfactory Reference Syndrome
To: maria.delatorre@meboresearch.com

Maria,

Thank you for your email.

We don't use any "tests" to see if someone smells. Simply put, we are sitting in a small therapy room, and it would be quite evident if the client smelled. We also ask spouses and family members about the alleged odor. We also ask about the clients' co-workers and friends. If these other sources say that they have never detected the client's alleged odor, that supports our personal experience of sitting in the room and noting that they do not smell.

ORS and other psychiatric conditions are not diagnosed or treated using equipment that measures bodily functions. In the case of ORS, our data collection is simple - we discuss the clients symptoms with them, and we observe using our five senses. We do not need biological measurements to tell us if someone is emitting a foul odor, nor do our clients' spouses, family members, friends, and co-workers.

We have treated many cases of ORS over the years. In every case, the client emitted no foul odor. In every case, the people in their lives (spouses, family members, friends, co-workers, etc.) confirmed that they had never once detected any foul odor. None of these clients have ever exhibited any observable odor that suggested they might have Trimethylaminuria or any other physiological condition. None have ever reported a situation in which others observe that they smell like fecal matter. In fact, just the opposite is true - in every single case, the client has been unable to find anyone to confirm the presence of the alleged odor.

OCD Center of Los Angeles

From: Maria de la Torre
Date: Wed, Jun 16, 2010 at 12:27 PM
Subject: Re: Olfactory Reference Syndrome
To: "OCD Center of L.A."

(I’m sorry, I don’t know the name of the person who replied to me and to whom I’m replying.)

To whom it may concern in OCD Center of LA:

I can appreciate that you have treated many so-called cases of ORS, diagnosed by you based on subjective observations of family members, friends, and co-workers, and this is precisely why I question the basis of your diagnoses. Would you diagnose a child as having frequent almost undetectable seizures after running a series of diagnostic tests, or would you instead simply diagnose the behavior as ADHD because that’s what is apparent to your sense of sight, and what family and friends tell you they observe? After all, the child is running around uncontrollably, then stops for a while, and then repeats the behavior. After all, family, friends and teachers should know; they live with this person most of the day, day in and day out.

What about learning disabilities? Should we just scold a child for not obeying, or should we test for language processing deficit or any of the other LDs? You know better than I that with a language processing deficit diagnosis arrived at through proper testing, a child can learn to circumvent this disability and become totally functional and even obtain a college degree with a successful career. What is the saving factor for the patient in both these cases, professional diagnostic testing, not a diagnosis based solely on subjectivity of family, friends, co-workers and a therapist.

I can also appreciate that you don’t use “tests” to see if someone smells because other than the test for Trimethylaminuria, there are no others, and thus unfortunately, many persons go undiagnosed and have to go through a very difficult daily existence. I do hope you insist that each patient you diagnose with ORS is at least tested for Trimethylaminuria before you arrive at your diagnosis, since everyone diagnosed with Trimethylaminuria had previously been told possibly more than once by family and friends that it’s all in their mind, or worse, diagnosed with ORS.

I can appreciate that many psychiatric conditions are based on a series of symptoms that cannot be tested with diagnostic equipment, since they are emotional related, yet ORS is based on a physical manifestation that could in theory and practice be measured with diagnostic equipment. I’m certain that most professionals would agree that a diagnostic equipment that measures volatile organic compounds is much more accurate than the human olfactory system, since the electronic equipment has a far greater range of sensitivity. There are scientific research studies that clearly point to the diversity in olfactory function amongst humans, with factors such as acclimation having a predominant role in human olfactory perception, whereas electronic equipment would not experience acclimation.

Since your ORS diagnosis is based on public perception, we can identify that there is a percentage of society unable to detect odor, such as your patient’s family, friends, small group of co-workers, and his therapist. This in fact, should be beneficial to this very lucky patient in that it opens up a whole segment of society in which he can function well socially, if given the proper diagnosis and treatment to overcome his anxiety and phobias.

However, it doesn’t rule out those persons in society which your patient may have come in contact with, and may still be coming in contact with, that are still able to detect his odor; therefore, in theory, this small group of persons in society that do detect odor could behave in an overtly or covertly hostile manner toward your patient, and you patient may becomes overwhelmed not knowing how to cope with his reality, thus developing OCD behavior.

Unfortunately the therapist, who is supposed to help the patient cope with his/her reality, goes on a limb and diagnoses this patient with ORS based on subjective opinions and not diagnostic tests, attempts to teach him than his ability to perceive his reality is questionable at best. And unfortunately most frequently, the goal is geared towards teaching the patients that the reality they have experienced is not real. Isn’t therapy supposed to help the patient identify reality, including the gray areas of life? But the patient’s reality was never measured scientifically with the proper diagnostic equipment to even measure the gray area, so the therapist has no clue what the patient's reality is or is not. Instead, it is just assumed that the patient is delusional and hallucinatory and given a diagnosis connoting psychosis, even without this diagnostic tool.

Until the proper diagnostic equipment is fully developed and made available to the medical community, my opinion is that what the patient truly needs from her mental health therapist is two-fold, not to be insistently told that she doesn’t smell and that she doesn't perceive her reality correctly, but rather to help her develop realistic techniques to identify who does and who does not detect her odor. This way, the patient can see a window of opportunity for a happy social life, NOT EXCLUDING the possible reality that others may detect her odor. Secondly, therapy would be most helpful in helping the patient alleviate or decrease the obsession with her odor by focusing on developing a positive social life with those persons who claim that they don't smell her and are not bothered at all with her scent, if any.

This approach is very different from labeling someone as delusional and hallucinatory,which would carry with it a psychosis diagnosis especially when taking into consideration that the basis for the diagnosis has not been thoroughly tested, if at all. Instead, it is based on very subjective observations of non-expert in the olfactory or body odor field.

Having had a false psychosis diagnosis may haunt all your patients in their future, even after the proper diagnostic equipment has been developed, for they will carry with them from hence forth a potentially misdiagnosed psychosis. Until such time as the appropriate tests have been developed, the proper diagnosis for this condition should fall under the OCD Classification, if for no other reason, in an attempt to prevent misdiagnoses.

María de la Torre
Founder and Director
MEBO Research
maria.delatorre@meboresearch.com

'Microbes and Us' Slide presentation

2010-06-19T02:03:00.024-04:00

By Dr. Irene Gabashvili, PhD (see biography below)

Microbes and us

IN addition to having a good time doing our trial run of Dr. Irene Gabashvili’s presentation, ‘Microbes and Us’, in Vokle live, chat, real-time e-mail, she has now posted for everyone to see these slides and Q&A transcript of the Live Online Webinar, which took place on February 12, 2010.

This transcript is very informative and particularly interesting as it identifies the normal bacterial flora of humans and where bacteria lives in our bodies, explains the types of microbes including intestinal microbiota responsible for IBS-C, IBS-D, IBD, Crohn’s disease, as well conditions that may be linked to microbiota, such as halitosis, hyperhidrosis, multiple chemical sensitivities, food intolerances (IBS, Celiac, TMAU, CFS), and more.

In this slideshow presentation, there is a section entitled ‘Diet Tidbits’ which addresses the most widely promoted prebiotics that have been suggested to increase the number of bifidobacteria and discusses the benefits of probiotics. This section also touches upon a very restrictive diet promoted as a way of reducing IBS symptoms, Crohn’s disease, Ulcerative Colitis and autism.

The final section includes the answers to the following webinar
audience’s questions:

Why do people have Bacterial Overgrowth?
Do bacterial populations in human body depend on genetics, environment?
What kind of bacteria are TMA-producing?
I heard that Solobacteria causes halitosis. Is it really so? (includes a list of ‘Halitosis-related bacteria’)
What bacteria smell?
Is heterogeneity of metabolic body odor sufferers hindering research?
The collection of microbes for study must be a problem. Cross-contamination, etc.
How do you get them?
What is the most effective treatment to eliminate the desired bacteria: food or antibiotics?
How often can we take antibiotics without causing harm?
How does stress affect bacteria and enzyme deficiencies / pathways?
How does stress affect intestinal permeability?
Could a probiotic cleanse (sold on the market) help to flush us help to populate good bacteria?
For many of us the diet is confusing would it be difficult to customize a diet for us?
How long will it take to see diet results?
What would be the ideal diet..Are proteins beneficial?
Why some IBS patients have no odor while others do?
Can FMO3 be genetically engineered into a probiotic?

We would like to thank all the participants who asked these questions and to our Pharmaceutical Scientist and owner of body odor support.com, Arun Nagrath, for participating in our live discussion session.

In spite of our technical ‘growing pains’ as we attempted to create this piece, all in all, we have acquired very valuable information from Dr. Gabashvili, to whom we are deeply appreciative for having helped us initiate this test webinar. On behalf of the body odor/TMAU and halitosis community, we thank you, Irene.

About Dr. Irene Gabashvili, PhD

Dr. Irene Gabashvili brings with her years of experience in biomedical industry and academia, as she is an Adjunct Professor of Bioinformatics and Biotechnology at San José State University. Throughout her career, Dr. Gabashvili has been interested in the molecular, cellular, and physiological mechanisms of health and disease. She developed models and data analysis approaches and experimentally studied physics of microbial infection, chemistry of light and radiation effects on living matter, plant enzymes, structural basis of antibiotic resistance, human pathologies dependent on variation in mitochondrial genes, development of sensory apparatus and aging, inheritance and environmental factors contributing to the development of diseases.

Dr. Gabashvili was overseeing exploratory trials and data mining studies in the past, working with medical doctors and supervising MD students. For example, she studied analysis of blood biomarkers to determine patterns of longevity at the Center of Genetic Ecology. She worked in microbiology, molecular biology, biochemistry and biophysics labs and was utilizing state-of-the-art techniques and instrumentation to characterize macro- and micro-molecules causing or protecting from disease. She continues to collaborate with experimental labs, in particular employing novel chromatographic and mass spectrometry approaches to identify disease biomarkers.

Dr. Gabashvili has developed software tools and IT infrastructure to support research and clinical processes. She worked with and for Hewlett Packard, Merck, Pfizer, Johnson & Johnson, Novartis, etc. Her academic partnerships include renown scientists and clinicians from Stanford and Harvard Universities.
Dr. Gabashvili demonstrated a concerted interest in applying her wealth of knowledge to MeBO's research aims for the betterment of our community. She is especially interested in clinical nutrition and the complex relationship between the human immune system with trillions of microbes populating human beings.

Olfactory Reference Syndrome paper published in PubMed

2010-06-12T09:11:00.001-04:00

The paper about Olfactory Reference Syndrome recently mentioned in the blog has now been published on Pubmed :

Abstract
The published literature on olfactory reference syndrome (ORS) spans more than a century and provides consistent descriptions of its clinical features. The core symptom is preoccupation with the belief that one emits a foul or offensive body odor, which is not perceived by others. This syndrome is associated with substantial distress and disability. DSM-IV and ICD-10 do not explicitly mention ORS, but note convictions about emitting a foul body odor in their description of delusional disorder, somatic type. However, the fact that such symptoms can be nondelusional poses a diagnostic conundrum. Indeed, DSM-IV also mentions fears about the offensiveness of one's body odor in the social phobia text (as a symptom of taijin kyofusho). There also seems to be phenomenological overlap with body dysmorphic disorder, obsessive-compulsive disorder, and hypochondriasis. This article provides a focused review of the literature to address issues for DSM-V, including whether ORS should continue to be mentioned as an example of another disorder or should be included as a separate diagnosis. We present a number of options and preliminary recommendations for consideration for DSM-V. Because research is still very limited, it is unclear how ORS should best be classified. Nonetheless, classifying ORS as a type of delusional disorder seems problematic. Given this syndrome's consistent clinical description across cultures for more than a century, substantial morbidity and a small but growing research literature, we make the preliminary recommendation that ORS be included in DSM-Vs Appendix of Criteria Sets Provided for Further Study, and we suggest diagnostic criteria.

Olfactory reference syndrome: issues for DSM-V

The outcome seems to be that they recommend including ORS to the Psychiatrist Manual of Mental Disorders. At the moment trimethylaminuria is the only generally accepted form of systemic body odor, so hopefully the psychiatrists will do their duty to their patients and arrange for the TMAU test at least, to any patient they wish to class as a case of ORS. There are likely a few more systemic body odors yet to be discovered, with dimethylglycinuria being an example of how they can find enzyme-related odors if they are really looking (perhaps only one person has ever being diagnosed as having this, perhaps because many very rare enzyme-related odors will exist ... as well as more common ones).

Ironically ORS being recognized as a mental disorder may unintentionally lead to more awareness of systemic body odors/halitosis and lead to research in that area.

More about the recent Olfactory Reference Syndrome press briefing by Dr Katharine Phillips

2010-06-01T03:16:00.001-04:00

The recent annual convention of American Psychiatrists in New Orleans saw interest raised into Olfactory Reference Syndrome, a disorder psychiatrists have come up with to explain people who come to them with body odor or halitosis concerns which they or anyone else associated with the person do not smell. Dr Katharine Phillips, a psychiatrist from the Butler Hospital in Rhode Island, hosted a press briefing on her findings of a small group of patients designated as fitting the ORS criteria.

Of course the big question is, do they really have an odor problem ? The pattern with systemic body odor or halitosis seems to be that most cases are transient and usually relatives or loved ones cannot smell them when they do smell to others. It would seem if a psychiatrist had a potential ORS case's well being as the main concern, it would be sensible to test all potential ORS cases for trimethylaminuria first. Even this is not satisfactory to declare it is in their mind, since it is very likely there are other systemic body odor or halitosis disorders caused by weaknesses in other bodily enzymes, but it is the only form of systemic body odor the medical system will currently accept. Dimethylglycinuria (DMGU) has already been proven as another systemic body odor although it is possibly very rare; however, it suggests that if they look hard enough they will likely find other metabolic weaknesses which will cause body odors. Only one case seems to have ever been documented for DMGU. Mild Isovaleric Acidemia is potentially a more common systemic body odor than DMGU. There's sure to be more, but TMAU does seem to have a chance of being the most common.

So the message to psychiatrist's is, at the very least, always test a potential ORS case for trimethylaminuria. You will likely be very surprised. As a society, the best and cheapest approach to body odor and halitosis would be a research center and clinic, which is something people could write to their politicians about.

Here is more media coverage of the ORS press briefing by Dr Katharine Phillips :

LA Times blog: People who are certain they stink, and the psychiatrists who sense this may be a disorder

ABC News: People Who Think They Stink May Have Mental Disorder 'Olfactory Reference Syndrome'

Medpage today: Body Odor Delusion May Spark Suicide Thoughts

WebMD: Many Delusional About Smelling Bad

Psych Central: Do You Think You Smell? Olfactory Reference Syndrome

New Trimethylaminuria document from Nigel Manning

2010-05-28T23:25:00.002-04:00

The urine test consists of two measurements:
a. trimethylamine or ‘Free’ TMA
b. TMA-oxide [+ free TMA] = ‘Total’ TMA.

Regular readers will know that Nigel Manning, Principal Clinical Scientist of Dept. Clinical Chemistry at Sheffield Children's Hospital in England has always been very kindly communicative to us about trimethylaminuria, including giving an in-depth interview about TMAU testing last year. Nigel has kindly given us a pdf document that is very good as a reference to trimethylamunuria, as well as giving insight into the statistics of his testing lab in Sheffield, which is the only known TMAU genotype (urine) test lab in the UK.

Nigel has also kindly offered to be allowed to be contacted from around the world by people thinking of testing or wishing to discuss their results.

Below is the new document in pdf format, which is hosted on our MeBO Research website :

TMAU – diagnostic testing at Sheffield Children’s Hospital

We have also included it in fulltext below for those without a pdf reader (minus the graphs)

TMAU – diagnostic testing at Sheffield Children’s Hospital.
Nigel Manning Dept. Clinical Chemistry, Sheffield Children’s Hospital,
Sheffield UK.

Introduction

The phenomenon of ‘fish odour’ has been reported for many centuries. More
recently attributed to the tertiary amine trimethylamine (TMA), the ammoniacal
body odour like the smell of rotting fish can have severely detrimental effects
on the lives of those suffering from ‘Fish Odour Syndrome’. Now more
commonly referred to as Trimethylaminuria or TMAU, patients with this
unfortunate condition exhibit increased excretion of TMA in urine as well as in
sweat and breath vapour. The main causes of TMAU, low hepatic TMA
oxidation and intestinal overproduction of TMA give rise to the two main types
of the disorder.

The inherited form of TMAU is known as Primary TMAU (TMAU1). The result
of a faulty autosomal recessive gene, TMAU1 patients have impaired activity
of a liver enzyme flavin-containing mono-oxygenase type 3 (FMO3) which
oxidises a wide range of substrates including many drugs. TMA is oxidised to
non-odorous TMA-oxide (TMO) by FMO3 which can then be excreted. TMA
itself is generated in the large intestine by bacterial degradation of compounds
such as choline (high in liver, eggs and beans/peas), carnitine (meat) and
TMO from seafood (TMA from fish ‘spoilage’ has been attributed to several
species of Vitrio and Shewanella bacteria).

TMAU1 therefore results from FMO3 deficiency with an increase in the ratio of
TMA to TMO in urine which can be used for diagnosis.

Due to the broad spectrum of substrates oxidised by FMO3, TMAU1 patients
may suffer from adverse reactions with many drugs including codeine,
tamoxifen, ketoconazole, nicotine, cimetidine, ranitidine and phenothiazine.
Hypertension may result from ingestion of red wine and cheese (and
chocolate), which produce the neurotransmitter tyramine, another FMO3
dependent compound. Many people suffer from migraines associated with
tyramine containing foods and perhaps FMO3 deficiency may explain some of
these cases, but overall this demonstrates the adverse medical
consequences of TMAU1 as well as the odour related psychosocial aspects.
The acquired form of TMAU is covered by the term Secondary TMAU
(TMAU2) where TMA excretion is high even though FMO3 activity is normal.
Most TMAU2 patients produce too much intestinal TMA due to excessive
bacterial growth of TMA-generating species. The TMA burden is so great that
FMO3 oxidation produces large amounts of TMO but (in most cases – but not
all) is still unable to oxidise enough TMA to prevent an excess. This problem
may be exacerbated by intestinal structural problems such as ‘blind loops’ or
post- operative complications. TMAU2 usually presents in adulthood although
children have been known to acquire excessive TMA-producing bacteria with
the resultant odour.

The diagnosis of TMAU2 depends on the detection of increased urinary TMA
and TMO with a normal TMA/TMO ratio indicating normal oxidation by FMO3.
Patients with liver or kidney disease have been known to produce a TMAU1-
like pattern of excretion, although due to a secondary cause. Importantly this
may also occur with a urinary tract infection (UTI) which results in TMA being
produced directly into the urine giving a false positive result. Whenever results
suggest TMAU1, therefore, UTI must always be excluded by microbial
analysis before a TMAU1 diagnosis can be confirmed in a follow-up sample.

Testing for TMAU

The urine test consists of two measurements:
a. trimethylamine or ‘Free’ TMA
b. TMA-oxide [+ free TMA] = ‘Total’ TMA.

The technique currently used in our laboratory is gas chromatography – mass
spectrometry (GCMS) analysis of the ‘headspace’ vapour of heated,
alkalinised urine. This method superseded a direct injection MS method used
from 1997 until 2002. Results from the two methods compared well, although
the current methodology allows for automated headspace sampling and
GCMS injection.

A positive result is usually followed up with a routine second test after a report
of the initial findings. The turnaround time for the test is currently 4 weeks or
less. A GP or physician referral is essential, but we can offer advice by phone
or email about how to start the process.

DNA analysis for the FMO3 gene is also now available with a turnaround time
of 8 weeks. The genetic test provides the vital confirmation required for a firm
diagnosis of TMAU1 and has demonstrated that the TMA / TMA-oxide ratio
may normalise in TMAU1 due to spurious increases in urinary TMA-oxide.

Results and Diagnoses
We tested 1150 urines from 716 individuals from 1997 to 2009.
379 results indicated significant TMAU.

Many TMAU sufferers may restrict their diet before testing in an effort to
reduce odour. This may occasionally affect an initial diagnosis as TMA
excretion may be sufficiently reduced to normal or give a normal Free to Total
TMA ratio (less than 21%). For diagnostic clarity it is essential that the sample
is collected when odour is at it’s maximum. This may necessitate creating the
conditions which induce the odour such as dietary intake of choline (eg
pulses, eggs, liver), carnitine (red meat) and trimethylamine oxide (seafood).
Dietary ‘loading’ is possibly most effective when restricted to a simple high
choline meal of 2 eggs and 400g baked beans. Previously choline
monohydrate was an effective loading agent but has become difficult to obtain
as a chemical for patient administration. The effect of choline loading and
diagnostic clarification achieved by loading can be seen in the following case
report.

A case of choline load to aid diagnosis in a case of TMAU:

An adult presenting with a significant odour was tested for urinary TMA. The
results showed both an increased TMA and Free/Total TMA ratio, which
indicated a possible primary defect (TMAU1). [Fig.2]

A repeat 24 hour acidified sample however gave a normal Free/Total ratio,
with increases in both the Free and Total TMA – suggesting the possibility of
increased oxidation in response to an increased Free TMA burden (a possible
indication of TMAU2).

Antibiotic therapy was commenced and resulted in the normalisation of Free
TMA although the Total TMA was still increased (again an indication of
increased oxidation in response to increased intestinal output of Free TMA).
For clarification a 5 gram choline monohydrate load was given to the patient
and samples collected for 72 hours after load.

Total TMA showed a dramatic increase (with Free TMA) and the Free/Total
ratio remained within normal limits. Gradually the Free and Total TMA
reduced to nearly normal excretion values.

These results indicated a treatable TMAU2 . The first result was probably due
to a urinary tract infection or bacterial contamination of the inital sample which
had not been acidified). The patient was further treated with antibiotics to
eradicate enterobacterial overgrowth.

Discussion
GCMS analysis of headspace vapour of alkalinised urine with stable isotope
dilution provides a robust method to measure both free and total TMA for the
diagnosis of TMAU1and 2. Differential diagnosis can be hampered by genitourinary
infections and intermittent presentations which may reflect TMAU1
carrier status.

Treatment of both TMAU1 and TMAU2 is based on diet to restrict the sources
(precursors) of TMA and antibiotics to eliminate the TMA-producing bacteria.
TMAU2 can in fact be cured by eradication of the excess bacteria, although
stubborn colonies may re-grow to excess and require further courses of
treatment.

TMAU1, as a genetic defect, cannot be completely cured although therapy
(dietary and antibiotic) can successfully control the patient’s free TMA to a
less odorous level. Patient’s residual enzyme activity is variable depending on
the specific mutation and as such trials with the cofactor riboflavin have been
tried with some success. Milder TMAU1 patients can, however, reduce their
TMA to almost normal values with just diet and periodic antibiotic therapy.
Other forms of therapy are based on the neutralisation of TMA chemically.
Skin creams with a comparatively low pH (5.0) may neutralise alkaline TMA.
This creates a non-volatile salt of TMA which lessens any odour and can be
washed off by the patient later. Another solution lies in deodorising tablets
such as ‘activated charcoal’ or copper-chlorophyllin complex (marketed as
‘Nullo’). These ‘internal deodorants’ have been successfully used for many
years and would be ideal for more severely affected TMAU1 patients.
Detection and perception of odours varies between individuals. Some people
are odorous to friends, family and work colleagues but are unaware of an
odour, whilst others maintain they are odorous but those around them would
not agree. For those individuals who are sufficiently motivated to seek medical
help, the type of odour is often difficult to describe, but ranges from ‘chemical’
to ‘faecal’. ‘Rotten fish’ or ‘ammonia-like’ is not always mentioned, but TMAU
seems to have become a focus for all malodours, possibly due to awareness
of the disorder, the availability of a test and the possibility of a diagnosis.
A significant cohort of sulphurous or faecal odours have been reported by
individuals who contact the laboratory. This may be another enterobacterial
problem, but although Shewanella species are known to produce both
hydrogen sulphide and TMA, we have yet to measure an increased TMA or
TMO as a secondary marker for enterobacterial overgrowth in these cases.
For those with a significant TMAU, difficulties in diagnosis mainly stem from
the interpretation of TMA and free/total ratios given the background of diet,
variation of enzyme activity and variation of bacterial sources of TMA. This
can be summarised by the sub-types of presentation and biochemical
abnormality we have encountered over the past 12 years. The new FMO3
mutation service should help to clarify TMA results greatly in the years to
come.

TMAU1 and TMAU2 possible sub-types:

a. TMAU1 transient neonatal – possible delay in switch from fetal enzyme
FMO2 to FMO3 TMA oxidation, but resolves during development.
b. TMAU1 severe childhood - parenting / schooling problems are possible.
c. TMAU1 adulthood – probably presented in childhood; long-term sociopathy.
d. TMAU1 heterozygote – may present only during dietary load / menses.
e. TMAU1 very mild – ‘double dose’ DNA polymorphisms – TMA borderline.
f. TMAU1 FMO3 mutation proven TMAU1 with increased TMO (like TMAU2)

a. TMAU2 severe neonatal -‘sepsis’ massive TMA responds to antibiotics.
b. TMAU2 childhood - antibiotic eradication prevents school / social problems.
c. TMAU2 adulthood – may have long history of odour, eradication possible.
d. TMAU2 intermittent – difficult diagnosis without precursor load.
e. TMAU2 due to UTI – presents biochemically as TMAU1 (urine-only odour).
f. TMAU2 due to renal or hepatic dysfunction – presents as TMAU1.

References:
Ayesh R, Mitchell SC, Zhang A, Smith RL (1993) The fish odour syndrome:
biochemical, familial, and clinical aspects. Brit Med J 307: 655-657.
Chalmers RA, Bain MD, Iles RA (2003) Diagnosis of trimethylaminuria in children:
Marine fish versus choline load test. J Inher Metab Dis 26 (Suppl 2): (448-P) 224.
Fraser-Andrews EA, Manning NJ, Ashton GHS, Eldridge P, McGrath JA, Menagé H
(2003) Fish odour syndrome with features of both primary and secondary
trimethylaminuria. Clinical and Experimental Dermatology 28: 203-205
Humbert JR, Hammond KB, Hathaway WE, Marcoux JG, O’Brien D (1970)
Trimethylaminuria: The fish-odour syndrome. Lancet 2:770-771.
Lee WG, Yu JS, Turner BB, Murray KE (1976) Trimethylaminuria: Fishy odors in
children. New Eng J Med 295: 937-938.
Mitchell SC (1996) The fish odour syndrome. Perspectives in Biology and Medicine
39 (4)
Treacy EP, Ackerman BR, Chow LML et al (1998) Mutations of the flavin-containing
monooxygenase gene (FMO3) cause trimethylaminuria. A defect in detoxication.
Hum Mol Genet 7: 839-845.
Treacy E, Johnson D, Pitt JJ, Danks DM (1995) Trimethylaminuria, fish odour
syndrome: a new method of detection and response to treatment with metronidazole.
J Inher Metab Dis 18: 306-312.

ABC News article on Olfactory Reference Syndrome

2010-05-28T15:12:00.003-04:00

RE: ABC News article on Olfactory Reference Syndrome

Back in January 30, 2010 we received an invitation in a comment in this blog under this post, from Drs. Jennifer Greenberg, Psy.D., and Sabine Wilhelm, Ph.D., who invited us to participate in their survey as they were conducting a research study on Olfactory Reference Syndrome (ORS). Many in our community participated in this survey, and Dr. Greenberg and I had a great deal of discussion regarding this diagnosis as noted in this blog’s post, ‘Response to Olfactory Reference Syndrome Survey MGH OCD and Related Disorders Program Survey’ and Dr. Greenberg’s reply.

Even though this ABC News article is profoundly upsetting in that it talks about some psychiatrists considering potentially listing ORS as a separate disorder in the Diagnostic and Statistical Manual of Mental Disorders, thus giving it greater validation, I am pleased to say that Dr. Jennifer Greenberg, stood up and gave her opinion in this article about her shift of treatment focus from ORS to OCD. This is a step in the right direction. The customary treatment focus for ORS is geared toward curing someone of a delusional condition. However, Dr. Greenberg has shifted her opinion on the treatment approach,

A delusional disorder is someone who has absolute conviction, they're 100 percent convinced that they are emitting an offensive body odor," said Jennifer Greenberg, a clinical research fellow at the OCD and related disorders program at Massachusetts General Hospital and Harvard Medical School.

While many delusional patients are treated with antipsychotics, Greenberg said, "What we are starting to think more about is that the disorder presents like disorders that are closer to obsessive compulsive disorder."

The patients who end up at specialized clinics such as Greenberg's, Phillips' and the OCD Center of Los Angeles often receive cognitive behavior therapy designed to retrain them to enter society and face their fears of reeking.

This is an initial positive step forward with signs of having been influenced by MeBO's Raising Social Awareness Campaign as a united international community. Here's one of the comments I wrote in this article on May 28, 2010,

Thank you Dr. Greenberg for shifting the focus of treatment from trying to convince a patient that they are delusional to instead be a disorder that is closer to OCD, in which the patient is encouraged to receive cognitive behavior therapy designed to retrain them to enter society and face their fears of reeking. It is very true that not everyone in society perceives their odor, so at least there is a window of opportunity to enjoy a productive social life. Unfortunately, those persons who are offended by one’s body odor would not be good candidates to socialize with, but there are those persons who simply don’t perceive some body odors.

Maria de la Torre
Founder and Director
MEBO Research
www.meboresearch.com

Thanks to everyone who participated in Dr. Greenberg's survey and who wrote to her as she reached out to us to gather information. I also recommend that anyone who feels lead to do so write a comment in this article thanking Dr. Greenberg for directing her attention to our needs.

María

MEBO Research, Inc. now Incorporated in State of Florida, USA

2010-05-15T07:39:00.016-04:00

It is with great pleasure that I announce that the Articles of Incorporation for MEBO Research, Inc. were registered at the Florida Department of State, Division of Corporations on April 21, 2010 and assigned Document Number N10000003979. Thus, MeBO is now officially a company registered in the United States.

The Legal Clinic of the College of Law of Florida International University has offered their pro-bono services to write the documents necessary for MEBO Research, Inc. The cost for this filing was $78.75. The next step is to apply with IRS for a 501(c)3 non-profit (Charity) organization status. I’ve been advised that to file for the 501(c)3 status will cost an additional $700-$800. It is with profound gratitude that I thank this institution, my Alma Matter, for extending this pro-bono service to us.

Once these steps are finalized, I will then apply to the College of Business Clinic (also a pro-bono service) at Florida International University for assistance in setting up a transparent accounting system, and hopefully also in the grant-writing process.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

786 228-6880

Does underarm body odor have a genetic factor ?

2010-05-04T14:32:00.000-04:00

Recently there has been interest in the theory that underarm-produced body odor could have a genetic factor, and there has been some interesting research into this, using monozygotic (identical) twins to study the hypothesis.

In a 2005 study, the aim was to use a group of human 'sniffers' to match underarm odor samples from identical twins who did not co-habit (so as to avoid cohabiting factors being a factor). They did indeed find that identical twins underarm odor samples were matched by the human sniffers more often than chance would dictate. Non-identical twins were also more often matched, but not as often as identical twins.

Some quotes from the study :

The idea that body odor reveals information about both genetic identity and genetic similarity is most readily tested by examining odor in twin pairs...

... Here we show that odors of identical twins (but not dizygotic twins) can be matched by human sniffers at rates better than chance, even when the twins are living apart. In addition, matching frequencies for identical twin odors were not significantly different from those for duplicate odors from the same individual. These results indicate an important genetic influence on body odor and the potential for developing technologies for human odor printing in relation to underlying genotype....

...For example, it is thought that body odor carries cues of genetic similarity, which may be used in mate selection...

...Environmental influences on individual odors are well known and include effects of diet, disease , parasitic infection, and social or reproductive status...

...While dietary influences are likely to be most relevant in humans, any environmental influences arising from cohabitation could potentially confound any putative odor similarity determined by genetic effects...

...We collected axillary odors on cotton pads worn overnight in the twins' own homes and delivered to us by hand the following morning...

...Female body odors may be more variable than those of males as a result of menstrual cycle influences...

...Possible sources of this effect are genes within or linked to the major histocompatibility complex (MHC). Although this requires further research, MHC genes appear to influence odor preferences in many vertebrate species including humans...

http://www.ncbi.nlm.nih.gov/pubmed/18682364

A study in 2009 examined the same hypothesis using identical twins, this time comparing samples biochemically, testing each sample for carboxylic acids, which are known to be a source of axillary body odor in humans.

In humans, a correlation between odour preferences and the HLA type of both the odour donor and the odour evaluating individual has been shown (,Wedekind et al. 1995; ,Wedekind & Füri 1997). Therefore, in humans an association between body odour type and genes in the HLA locus appears to exist. Thus (i) it has been proposed that mice secrete a specific pattern of volatile fatty acids associated with their MHC type, (ii) human body odour appears to be influenced by genes in the HLA locus and (iii) a specific pattern of odorant fatty acids in human axilla secretions is strongly influenced by genetic factors (our current finding). The key challenge for the future is to establish whether the genetic factors contributing to these analytically observed profiles of fatty acids reside at least partly within the MHC/HLA locus in humans as they do in mice.

http://rsif.royalsocietypublishing.org/content/6/33/377.long

It should be remembered that neither studies will take into account malodorous biochemical systemic body odors like TMAU, since they will not be aware of such sources of odor. The first study told the testers not to eat certain foods known to cause body odor, but this was so diet wouldn't be a factor. Nevertheless it is likely that in many body odor cases there probably is a strong genetic factor, even if it is a susceptibility to a particular type of bacteria ecology under the arm. And of course most systemic body odors probably have a strong genetic factor.

UK Trimethylaminuria testers can contact Nigel Manning to ask questions about their results

2010-05-02T00:03:00.001-04:00

Many will know that Nigel Manning is responsible in the UK for setting up the only clinical trimethylaminuria testing unit in the UK, at Sheffield Children's Hospital.

Now Nigel Manning has kindly said we can post in this blog that anyone who has been tested by him for trimethylaminuria can contact him on his personal line or by email to ask about interpretation of their TMAU test results. This is very helpful, since often those testing have initiated the process themselves and had to initially convince a doctor to let them test. Nigel also says he is interested in clinical feedback from the testers (eg circumstances of odour, frequency, history etc)

Nigel can be contacted by those who have been tested by him by phone or email :

Nigel Manning
Principal Clinical Scientist
Dept. Clinical Chemistry
Sheffield Children's Hospital
Sheffield S10 2TH
UK
Phone: 0114 271 7479
email : Nigel.Manning@sch.nhs.uk

Nigel kindly done an interview with us earlier this year :
Interview with Nigel Manning, tester of clinical cases of trimethylaminuria in the UK

Note : It is probably ok for those wishing to test in the UK to contact Nigel Manning as well, for advice and information as to how to test

HBRI doing TMAU urine (phenotype) testing again

2010-05-01T13:54:00.003-04:00

The HBRI website says that it is accepting urine samples for TMAU phenotype testing again. This has been confirmed by email. HBRI is the institute of Dr John Cashman, who has a long history in TMAU/FMO3 research.

They test for trimethylamine-oxide in the urine, as well as trimethylamine. The test is conducted in-house and the cost is $400. A sample must be sent frozen overnight.

This means there are now 3 known TMAU urine testing sites in the USA ; HBRI in San Diego, UC Denver, and Arkansas Children's Hospital.

UC Denver and HBRI both test for TMA and TMA-oxide in their urine test, with Denver costing $250 and HBRI costing $400. But with HBRI, you can test direct without the need for a Dr requesting the test.

We keep a note of all the known TMAU test labs in the world on our MeBO TMAU page :

Known trimethylaminuria test labs

HBRI accepting samples for TMAU DNA testing again

2010-04-30T01:53:00.001-04:00

We have been informed that HBRI is accepting samples for TMAU DNA testing again. Presumably the cost is still around $400 and no insurance is accepted. HBRI has a long history of TMAU testing. The Institute was founded and is run by Dr John Cashman, who has a long history in FMO3 research. He kindly allows people to TMAU test directly since he understands the difficulties people will have in getting access to the test through the medical system. HBRI also performs the urine TMAU test for around $400. HBRI is based in San Diego. TMAU DNA testing had been suspended at HBRI for a while due to lack of funding.

Trimethylaminuria testing at HBRI

MeBO Research is compiling a list of known TMAU test labs. If you know of any others, we would be happy to add them.
MeBO Research list of known TMAU test labs

Genetics of Hyperhidrosis Study

2010-04-29T18:08:00.001-04:00

This blog and MeBO are generally aimed at learning about systemic body odor and halitosis, but if we hear of any interesting news about bromhidrosis, we are happy to post it.

Whilst hyperhidrosis itself does not mean the person will be prone to bromhidrosis, some feel that hyperhydrosis naturally leads to their bromhidrosis problem.

In this months NORD newsletter, they have written that the Albert Einstein College of Medicine of Yeshiva University and Montefiore Medical Center is conducting research to see if it may be a genetic disorder :

Genetics of Hyperhidrosis Study

Researchers at Albert Einstein College of Medicine of Yeshiva University and Montefiore Medical Center are seeking individuals affected with hyperhydrosis to determine if the condition is inherited and if so, to identify the responsible gene(s). Identification of the responsible gene may help to determine the underlying cause of hyperhidrosis and be used to develop an effective therapy or even a cure. Study participants are asked to sign HIPAA and informed consent forms, complete a medical and family history form, and submit a sample of their buccal cells. This is accomplished by rinsing the mouth with mouthwash and spitting into a small container. No travel is required and there is no cost to participants. Kits are sent through the mail and a stamped, self addressed envelope is provided for study materials to be returned. For more information contact Betsy K. Vibert, MS, CGC at 877-444-2525 (toll free) or 718-430-3739.

Your MD can do the TMAU urine test via the Mayo Clinic test service

2010-04-28T12:59:00.002-04:00

Note: Your MD can alternatively send a sample direct to the Arkansas Lab for a trimethylaminuria urine test

Important : The Trimethylaminuria urine test is a challenge test. A dose of choline should be taken. It is currently unclear how the Mayo clinic advise the use of choline in the test.

The Mayo Clinic accepts urine samples for TMAU testing only with your Physician's written orders for the Mnemonic Test WILD105, for the cost of $144.20. As per the Customer Service Lead at the Mayo Clinic instructions, please see their website for additional information, “Please utilize our Mayo Medical Laboratories website at http://www.mayomedicallaboratories.com/. This site will guide you in getting a specimen to use for testing. If you have further questions please call 800 533 1710”.

The Mayo Clinic also faxed us the form below for us to print and give to our physician so that he/she prescribe the testing procedure; this form includes instructions on how to handle and ship the specimen. We may then mail the physician’s order and the urine sample to:

The Mayo Clinic Medical Laboratories,
Superior Drive Support Center
3050 Superior Drive NW
Rochester, MN 55901

The Mayo Clinic test page : http://www.mayomedicallaboratories.com/test-catalog/Overview/90544

Customer Service staffed with 24-hour personalized service:
http://www.mayomedicallaboratories.com/customer-service/index.html

United States, Canada
· 800.533.1710
· 507.266.5700
· mml@mayo.edu
International
· 507.266.5700
· mmlglobal@mayo.edu

Copy and paste form below with full instructions for your physician and lab

Mnemonic -
WILD105

Mayo Unit Code -
90544

Fee -
$ 144.2

Test Name -
TRIMETHYLAMINE (FISH ODOR), URINE

CPT Codes -
82491, 80500

Methodology -
GC Gas Chromatography

Test Notes -
Samples must be shipped Monday - Wednesday.

Referral Lab -
ARKANSAS CHILDRENS HOSPITAL

Transport Method and Temperature -
15-20 ml RANDOM FROZEN- URINE and/or aliquot of post-load speciment.
Adjust urine to pH -5.0 using a small volume of concentrated HCl.
Fill several GLASS tubes (glass screw-cap tubes or glass red-top vacutainer tubes)
HALF FULL to allow for expansion of the specimen due to freezing.
FREEZE, CUSHION WELL TO AVOID BREAKAGE.
TRIMETHYLAMINE IS A HIGHLY VOLATILE COMPOUND AND WILL BE LOST FROM THE SPECIMEN IF THESE INSTRUCTIONS ARE NOT FOLLOWED.
SPECIMENS SHIPPED IN PLASTIC OR NOT FROZEN WILL BE REJECTED.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Trimethylaminuria testing in the USA : Denver Colorado

2010-04-28T02:01:00.000-04:00

A shortage of trimethylaminuria testing labs in the USA recently has been a problem, with only one currently known to be accepting orders for the urine (phenotype) test (The Arkansas Children's Hospital).

We are happy to announce that is seems that the urine (phenotype) and blood (DNA) test are available to order from the University of Colorado in Denver. Dr Paul Fennessey works on this campus, but he does not seem to be involved with the new testing labs, but probably had a role in them adding TMAU testing to their catalog. TMAU was first diagnosed by Drs on the campus in 1970, and so has a long history of testing for TMAU.

The urine test is $250 and the blood (DNA) test is $600.

They require a Doctor to request an order, except for the urine test in UC that can be arranged through Dr. George Preti, Monnel Chemical Senses Center.

Note : The TMAU urine test is available from Arkansas Children's Hospital for approximately $140 : Arkansas TMAU urine test

Trimethylaminuria urine and blood testing Denver Colorado

TMAU urine (phenotype) test	TMAU blood (DNA/genotype) test
price : $250	price : $600
lab : UCD Biochemical Genetics Laboratory	lab : University of Colorado DNA Diagnostic Laboratory
website : http://www.uchsc.edu/bglab/	website : http://www.uchsc.edu/dnalab/
TMAU urine test page	Note : officially they require you to do the urine test first
Test must be ordered by a Dr or a TMAU expert	Test must be ordered by a Dr or a TMAU expert
TMAU urine test requisition form Denver	TMAU DNA test requisition form Denver
contact email :	contact email :

Resumed TMAU urine testing at University of Colorado Denver through Monell Center

2010-04-27T23:55:00.000-04:00

As previously discussed, the urine testing process has resumed at UC Denver, with Monell being the coordinating center with regard to the collection, recording and processing. However, at this time, the Monell website has not yet been updated to reflect that information. Therefore, Dr. Preti has given his approval to publish his direct contact information for those seeking information on testing.

Please contact him directly, preferably by email, and someone will advise with regard to the procedure to follow to get the testing done:
email -- Preti@monell.org
phone: 1-267-519-4920

Thank you.

http://www.monell.org/contact_us/tmau/

.

Please allow 7 days for a response.
Please do not contact him by both email and phone.

Arkansas Children's Hospital will now allow TMAU urine testing

2010-04-27T23:50:00.000-04:00

The Arkansas Children’s Hospital Lab is now accepting adult and children's urine samples for TMAU testing sent directly to them, as opposed to having to send them first to the Mayo Clinic. This must be collected through your Physician or a lab referred by a Physician. Any Physician can order this test by calling this number for additional instructions, at:

Metabolic Genetics Lab
Arkansas Children's Hospital
501-364-1311

Certain insurance companies, like BC-BS, have paid for the test which currently costs $126.35. You may want to check with your insurance company to see if they will pay or how to appeal if denied. If denied PLEASE appeal - for everyone’s sake. The majority of appeals are usually approved, and by appealing, we are showing the demand for this test.

Possibly a way to get tested via Arkansas is to take information about TMAU to your MD, including the request papers from the ACH website.

Arkansas Childrens Hospital webpage with requisition form for TMAU urine test
Arkansas Childrens Hospital PDF document Requisition Form and information on their TMAU urine test

Additional information will be forthcoming soon.

As mentioned in our post, Your MD can do the TMAU urine test via the Mayo Clinic test service, the Mayo Clinic is accepting urine samples for TMAU testing only with your Physician’s written order for the Mnemonic Test WILD105 for the cost of $144.20. They then forward the sample to the Arkansas Children’s Hospital Lab where it is tested. The instructions of how to prepare the specimen for temperature requirements and transport method is also included in this post.

If you should happen to be near a Mayo Clinic facility and wish to use their services as well, you may also do so also with a Physician referral. You would need to call them in advance and make the necessary arrangements for testing and billing at 800-533-1710 or 507-266-5700, as noted in the post.

Differences between Trimethylaminuria urine testing

2010-04-27T13:55:00.000-04:00

Currently the only known Trimethylaminuria urine testing labs in the USA are :

Arkansas Children's Hospital, Metabolic Genetics Laboratory
University of Colorado Denver, Biochemical Genetics Lab

At this stage in the evolution of TMAU testing, there seems to be no agreed standard, and each testing lab sets their own testing procedures and reference range. This post attempts to clarify the differences between the 2 labs known to be TMAU testing in the USA.

The main differences seem to be :

Arkansas only tests for Trimethylamine levels, and is much cheaper (around $130)
Denver tests for trimethylamine and trimethylamine-oxide, but is dearer (around $250)

Since TMA-oxide is the final metabolized product of normal FMO3 function, it would seem best to test for TMA-oxide as well as a defining test. TMA-oxide gives you an idea of how well your FMO3 enzyme dealt with the TMA load, and therefore gives an indication as to the % function of the enzyme. It is not possible to get an idea if you have a genetically poor functioning FMO3 enzyme without testing TMA-oxide levels.

Apparently, The 2 labs also use different equipment for the TMAU urine test, although probably both are reliable.

Probably a best idea would be to use the Denver lab as a first choice, and perhaps use the Arkansas lab for monitoring TMA levels if price is a factor.

USA TMAU urine test labs	Arkansas Children's Hospital	University of Colorado, Denver
lab name	Metabolic Genetics Laboratory	Biochemical Genetics Laboratory
Official information	ACH TMAU test requisition form (PDF) Lab webpage	Lab webpage

Carry Wilson autobiography : The foul body odor that almost killed me

2010-04-27T12:08:00.001-04:00

This autobiography was self-published in 2007 by one of our very own TMAU sufferers, Carry Wilson. This testimonial is a very deep and candid account of her experiences with the social and emotional obstacles sufferers face on a daily basis. It clearly portrays the personal profound devastation these obstacles produce, and its impact on the sufferer’s family. Each page screams out the desperate need for research and a cure. Thank you Carry for bravely telling your story, helping to break down the stigma attached to this malady, and for representing us all in our plight!

Carry will be speaking on the inaugural Body Odor Support Forum Women’s Conference Call next Wednesday, July 30th at 8:00p.m. EST.

Plagued by a terrible odor that not only proved to be embarrassing but also made it difficult for her to hold a job and to provide for herself and her young daughter, Carry Wilson sought help from a number of physicians in various fields. Despite the indications of her own research, medical professionals repeatedly dismissed her concerns and assumed she suffered from a psychiatric disorder rather than a medical illness. Desperate, isolated, and depressed, she was hospitalized several times with suicidal ideations, a history that only seemed to make it more difficult to secure quality medical attention.

The book or Ebook is available from the publisher :
http://www.dorrancebookstore.com/foboodthalki.html

ISBN: 978-0-8059-7188-0
ASIN: B0010KDSTY

It is also available from Amazon and possibly elswhere:
http://www.amazon.com/Foul-Body-Odor-Almost-Killed/dp/B0010KDSTY

Alice Mata TMAU book now available as an ebook

2010-04-27T12:05:00.001-04:00

The book, When Bathing Is Not Enough, published by a TMAU sufferer, Alice Mata, in 1999 is now available as an ebook from the publisher (Authorhouse). Current price $3.95

Ebook by Alice Mata : when bathing is not enough

TMAU genetic testing in Spain

2010-04-27T00:01:00.001-04:00

This lab looks for mutations in the FMO3 gene, and if they cannot find any, they proceed to look at other TMAU or other body odor related genes: SLC22A1, DMGDH, SDH, FMO1.
We are most grateful to a member of our community, Natalia (Nata_80/Jersey), who has done us the favor of obtaining important genetic TMAU and FMO3 testing in Valencia, Spain, at the Hospital Clínico Universitario de Valencia, Instituto de Investigación Sanitario, Fundación Investigación Clínico de Valencia (INCLIVA) headed by Dr. Javier Chaves. Nata relays the following information:

This clinical hospital in Valencia is doing genetic analysis of this condition [TMAU]. It also accepts and analyzes samples from other countries.

The lab looks for mutations in the FMO3 gene, and if they cannot find any, they proceed to look at other TMAU or body odor related genes: SLC22A1, DMGDH, SDH, FMO1.

These tests require a physician referral (public or private, who would need to assume the cost of these tests)…

Contact information:

Unidad de Genotipado y Diagnóstico Genético
Fundación Investigación Clinico de Valencia-INCLIVA
AVDA Blasco Ibañez 17
Valencia 46010
telefono: 963862664
fax: 963862665
email: a.barbara.garcia@uv.es

PLEASE NOTE that TMAU urine tests are not done here, although measures to set up this type of test are underway. Normally, in the TMAU diagnostic process, the urine is tested first, and if there is an excess of TMA, the gene test is then performed. I don’t have any knowledge of other labs in Spain that do urine tests. However, there are labs in other European and American countries. Perhaps they will receive samples from other countries.

Additional information provided by Ana Barbara Garcia of the Unidad de Genotipado y Diagnóstico Genético [The Genotyping and Genetic Diagnostics Unit]:

Yes, we perform genetic diagnosis of trimethylaminuria. However,
samples should be sent from a hospital or medical practice.

The procedure of this diagnosis involves 3 steps, although you
may decide to perform all of them or only the first:

1- FMO3 gene analysis: Most mutations responsible for the disease have
been described in this gene. The cost of this analysis is (350€)

2- If no mutations have been found in step 1, we propose to analyse 2
other genes, where some mutations have been found: SLC22A1 (500€) and
DMGDH (600€).

3- If no mutations are found: we propose to analyse 2 genes. They have
a role that make them good targets responsible for the disease:
SDH (750€) and FMO1 (400€)

If you are interested, I would email your medical doctor the instructions and all the documents that should be filled.

Thank you very much for your interest.

Sincerely:

ANA BARBARA GARCIA

********************************
ANA BARBARA GARCIA GARCIA

Unidad de Genotipado y Diagnóstico Genético
Fundación Investigación Clinico de Valencia-INCLIVA

AVDA Blasco Ibañez 17, Valencia 46010

telefono: 963862664
fax: 963862665
email: a.barbara.garcia@uv.es

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Systemic body odor and/or halitosis sufferers in Ireland can be referred to Dr Eileen Treacy in Dublin

2010-04-26T02:06:00.000-04:00

Finding expert help for systemic body odor and/or halitosis can be very difficult if not impossible (for most it is impossible). However, sufferers in Ireland who feel their odor problem is systemic can be referred to Dr Eileen Treacy at the National Centre for Inherited Metabolic Disorders in the Childrens University Hospital in Dublin. Dr Treacy gave us permission to publish her instructions for referral in a post. The person must go through their Irish GP to get an appointment. Dr Treacy wrote :

We are happy to take Irish referrals. These should be made by writing (not email) from the individuals’ GP to the address below (National Centre for Inherited Metabolic Disorders).

Best wishes,
Eileen Treacy

Prof. Eileen Treacy,
Metabolic Consultant,
National Centre for Inherited Metabolic Disorders
Childrens University Hospital,
Temple St.,
Dublin 1

Dr Treacy has a respected history in TMAU research, with pubmed papers dating back to 1998. She worked as a pediatrician at the McGill University Hospital in Montreal, and possibly was an influence as to this hospital being one of only perhaps 3 labs who test for TMAU genotype (the urine test) in North America.

Dr Treacy has mentioned before that TMAU may warrant being added to newborn screening tests, and that the estimate for 'severe' TMAU (the classic type, where the person has 2 mutant copies) may be not greater than 1/5000 (which would be 60,000 in the USA), but that it is not known how many may have the milder types.

Her involvement in TMAU papers can be seen in this link
Pubmed papers about trimethylaminuria involving Dr Eileen Treacy

Some notes about papers Dr Treacy has been involved in :

2000 paper : typically TMAU is taught as being 2 mutant copies, but this paper mentions that polymorphisms, that are usually much less severely affected copies, in the case of FMO3 function may be an issue.

The results imply that prevalent polymorphisms of the human FMO3 gene may contribute to low penetrance predispositions to diseases associated with adverse environmental exposures to heteroatom-containing chemicals, drugs, and endogenous amines.
http://dmd.aspetjournals.org/cgi/content/full/28/2/169

2002 paper: In vivo variability of TMA oxidation is partially mediated by polymorphisms of the FMO3 gene

...We have previously described a number of FMO3 polymorphisms which in vitro exhibit reduced substrate affinity for several FMO substrates. Here we show that three prevalent polymorphisms (E158K, V257M, and E308G) inherited in particular combinations confer a slight decrease in TMA oxidation under normal physiological conditions, which may be clinically "silent." With the use of substrate loading or with the interaction of other known modulators of FMO3 activity such as hormonal influences, these genotypes may predispose to mild TMAU

http://www.ncbi.nlm.nih.gov/pubmed/11461189

2005 paper : Polymorphisms of the Flavin containing monooxygenase 3 (FMO3) gene do not predispose to essential hypertension in Caucasians
In this study conducted in Ireland, a large sample of high blood pressure and hypertension sufferers were compared against a group of healthy people with common FMO3 polymorphisms, with the hypothesis that such FMO3 polymorphisms could potentially predispose the person to high blood pressure and hypertension. Tyramine is a good FMO3 substrate and known to be involved with blood pressure control. The study found no link.

CONCLUSION: These results suggest that the variants in the FMO3 gene do not predispose to essential hypertension in this population.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16324215

Related links :
1998: Mutations of the flavin-containing monooxygenase gene (FMO3) cause trimethylaminuria, a defect in detoxication

OMMBID chapter on trimethlyaminuria written by Dr Eileen Treacy. The abstract is free but the full chapter costs around $30(?)

TMAU (Trimethylaminuria) test center in New Zealand (urine test)

2010-04-22T02:11:00.000-04:00

This is part of the quest to find out all the worldwide TMAU testing centers and their rules of testing. A post to inform our Australian/New Zealand friends that there seems to be a test center in New Zealand as well as Australia. This is all the details we currently have. It doesn't say what the parameter settings are (e.g. at what % the 'fail' barrier is set ? do they test for secondary TMAU ?) , and it is posted only to raise awareness of the option. If any further details are learnt they will be posted later on. Any details learnt by others would be most gratefully welcomed, either here or on the body odor forums.

New Zealand. Uni of Canterbury. $NZ300
http://www.labnet.co.nz/testmanager/index.php?fuseaction=main.DisplayTest&testid=461

Testing for Trimethylaminuria in Australia : One person's experience

2010-04-22T02:07:00.000-04:00

A lady from Australia has kindly given permission for a post she did in the Rob's Yahoo TMAUcure forum to be reprinted here. It encapsulates the difficulties of the current process of TMAU testing in Australia, and gives an insight to the procedure. Thank you for allowing us to repost it.

It is posted so that Australians wishing to test can get an idea of what to expect, and also allows a comparison to other testing protocols throughout the world. For instance, a 'morning urine' sample is used, whereas Dr Fennessey in Denver seems to use a '24 hour period' sample.

I received a bill for my first urine test. It was $70. I did have a pathology slip so I don't know why I had to pay. Perhaps my doctor did not tick "bulk bill" on the slip. This urine test was sent from Victoria to Brisbane by the pathology company. The invoice says CaSS Pathology QLD. They test for TMA only, not TMA oxide.

A more reliable test is done in Adelaide, where they test for TMA oxide as well as TMA levels. It is done at the Royal Women's and Children's Hospital in Adelaide. I had mine sent from the Royal Children's here in Melbourne. I just rolled up with my pathology slip. Adelaide only accept urine samples from two hospitals in Australia. I am not sure where the other one is. If you would like further info, then send me an email. I did not receive a bill for the second test. I am not sure why, maybe it was because it was sent by a public hospital.

For both tests, all I needed was a pathology slip. My doctor used a Dorovitch slip. Both tests came back negative even though I loaded up for four previous days.

Urine must be frozen within an hour or so and kept frozen in transit.

---------------------
follow-up email: The writer wished to add more to her original post for clarification purposes. Thank you again for being so helpful.

I feel that what I wrote previously needs clarification. This is what I was advised to do:-

It is best if the urine sample is a morning sample (more concentrated). Use a container that holds around 100ml (the norm) and collect enough urine to almost fill it. Put the lid on straight away. It is best to do it at the collection centre where it can be frozen immediately and then kept frozen in transit. You must insist on this and perhaps write it on the container.

If distance from the centre is a problem, you can produce the sample at home. I was told that it is ok to refrigerate it for a short time until you are ready to leave. As long as the container is tightly sealed and not allowed to get above room temperature, there should be minimal loss over several hours. When you are leaving put it in an esky with ice and take it to the pathology/collection centre. It is best not to freeze it at home because it may defrost in transit. So leave the freezing to the collection/pathology centre or hospital.

I made up my own mind to load up with choline for four previous days but I was told to eat a meal containing fish or two eggs 1-2 hours before I collected the sample ie. breakfast.

New FMO3 paper from Japan

2010-04-22T02:05:00.001-04:00

FMO3 research is always of interest to the blog, given that it is the enzyme that neutralizes trimethylamine in humans, and also deals with 1,000s of other smelly compounds (which contain a sulfur, nitrogen or phosphate).

The abstract does not contain much information on the paper, so it is unknown how significant the paper is. Presumably it is only more 'proof' of previous research. It is of interest that they mention 9 'novel' TMAU cases were diagnosed amongst self-reported volunteers, probably indicating how the problem is underestimated, given the current list of 'FMO3 DNA baddies'.

Individual Differences of Drug-metabolizing Enzymes as Determinants for the Metabolic Fate of Chemicals-A Study of Trimethylamine and Flavin-containing Monooxygenase 3
Shimizu M.
Laboratory of Drug Metabolism and Pharmacokinetics, Showa Pharmaceutical University.

This Japanese lab, Laboratory of Drug Metabolism and Pharmacokinetics, Showa Pharmaceutical University, has a history of Trimethylaminuria research and testing, and perhaps Japanese members of the community would be able to test for TMAU there in Japan.

この日本語研究室、研究室薬物動態、昭和薬科大学、そして社会の、おそらく日本のメンバーTMAUのため、日本でテストすることができるだろうTMAU研究の歴史があります。

http://www.shoyaku.ac.jp/j-home/01kenkyu/lab/doutai/index.html

Update:

It does look as if this university lab does do the TMAU urine test. Here is the Professor's own website :

Trimethylamine testing website in Japanese
Japanese TMAU test site in google-translation to English
Professor Yamazaki's TMAU website in google-translation
日本語トリメチルアミン尿症のテストサイト
教授山崎昭和大学トリメチルアミン尿症のウェブサイト

Dimethylglycine dehydrogenase enzyme (DMGDH)

2010-04-21T17:54:00.000-04:00

dmgdhd is a disorder characterized by fish odor, muscle fatigue with increased serum creatine kinase.

Pathway: choline metabolismTrimethylaminuria is the only real 'accepted' form of metabolic body odor by those few in the medical system who are aware of any form, but another often forgotten about is dimethylglycinuria, to do with saturation of the Dimethylglycine dehydrogenase enzyme. However there seems to be only one recorded case of DMGU, and it's unclear if this is because no-one tests for it or it is so rare.
(2001 dimethylglycinuria case)

There are a lot of similarities with 'official' TMAU, in that it is thought to give off a fish smell. Also the enzyme is part of the choline metabolism. That said, presumably this enzyme deals only with one 'substrate' (it oxidizes dimethylglycine), whereas FMO3 oxidizes 1,000s of substrates (including trimethylamine). The sufferer was also said to have a high creatine kinase blood level, which may be a clue as to this problem (or maybe not). Whilst FMO3 uses riboflavin as a co-factor, DMGDH uses folate as it's co-factor.

It would be interesting to know if they discovered DMGu by using an open-ended look for volatile organic compounds in a mass spectrometer/gas chromatography test, or if they were only looking for DMG. The former would be the best starting test for defining a metabolic body odor problem, since in most cases we don't know what we are looking for yet.

Why only one case has been recorded is not known, however it would seem at the moment that an assumption could be made that DMGu is very rare and that one or more other forms of metabolic body odor are far more common.

Dimethylglycine dehydrogenase is a gene that encodes an enzyme involved in the catabolism of choline, catalyzing the oxidative demethylation of dimethylglycine to form sarcosine. The enzyme is found as a monomer in the mitochondrial matrix, and uses flavin adenine dinucleotide and folate as cofactors. Mutation in this gene causes dimethylglycine dehydrogenase deficiency, characterized by a fishlike body odor, chronic muscle fatigue, and elevated levels of the muscle form of creatine kinase in serum.

...defects in dmgdh are the cause of dmgdh deficiency (dmgdhd) [mim:605850]. dmgdhd is a disorder characterized by fish odor, muscle fatigue with increased serum creatine kinase. biochemically it is characterized by an increase of n,n- dimethylglycine (dmg) in serum and urine.

http://harvester.embl.de/harvester/Q9UI/Q9UI17.htm

Biochemically it is characterized by an increase of N,N-dimethylglycine (DMG) in serum and urine.

Pathway: Amine and polyamine degradation; betaine degradation; sarcosine from betaine...

SwissProt Accession No.: Q9UI17 Dimethylglycine dehydrogenase, mitochondrial precursor; (Homo sapiens); 99% similarity over 866 a.a.

(Last modified July 7, 2009. Version 80.)

http://www.uniprot.org/uniprot/Q9UI17&format=html

1999 paper : 'Fish odor' case due to dimethylglycine

2010-04-21T05:56:00.001-04:00

from 1999 :

This paper tells of a man(38) who smelt of a fish odor since 5, and was negative for TMAU. He was finally diagnosed as having too much dimethylglycine in his blood. A DNA test seemed to confirm a mutant homozygous gene for the Dimethylglycine dehydrogenase enzyme. He also complained of muscle fatigue.

In this case, choline is to be avoided because it is metabolized in the body to dimethyglycine. Its not to do with gut bacteria. Betaine is also to be avoided, as can be seen in the graph. Possibly most of our betaine is derived from choline breakdown.

For this enzyme, B2 is the co-factor, and folate could also be implicated.

A main point is that his FMO3 enzyme seemed to be fine, and he even done well for (low) TMA levels after eating fish. This may be a test worth doing if you feel it could be an issue.

Pubmed abstract : http://www.ncbi.nlm.nih.gov/pubmed/10102904
full paper : http://www.clinchem.org/cgi/content/full/45/4/459

This subject may be returned to in the next few days, for elaboration and in case of errors

Isovaleric Acidemia: sweaty feet syndrome

2010-04-20T18:15:00.001-04:00

Genetics Home Reference
A service of the U.S. National Library of Medicine

Isovaleric acidemia is another cause of metabolic body odor. It is the body's inability to process certain proteins properly. A characteristic sign of isovaleric acidemia is a distinctive odor of sweaty feet throughout the body. The symptoms of this disorder can become apparent within a few days after birth, during childhood, and may come and go over time. Like many other genetic malodor conditions, some people may be carriers of this IVD gene mutation and be 'asymptomatic'. This article also refers the reader to information about treatment for isovaleric acidemia.

full article:
http://ghr.nlm.nih.gov/condition=isovalericacidemia

2006 paper on Isovaleric Acidemia : 'sweaty feet syndrome'

2010-04-20T18:14:00.001-04:00

Isovaleric acidemia: new aspects of genetic and phenotypic heterogeneity

http://www.ncbi.nlm.nih.gov/pubmed/16602101

Vockley J, Ensenauer R
Department of Pediatrics, University of Pittsburgh School of Medicine, Children's Hospital of Pittsburgh, 3705 Fifth Avenue, Pittsburgh

Note: This editorial is the writers opinionin the murky world of metabolic body odor and halitosis, you have to wonder if in reality this means they will have no problems except with transient 'sweaty feet odor' that never seems to be around when a doctor is present

This is an interesting paper because the 'rules' for isovaleric acidemia were rigidly set (2 kinds: both serious and obvious) until a blood check of a sample normal population (neonatal babies) was taken and there was found to be a 3rd group who the researchers deemed to be, so far, 'asymptomatic' (without problems). However, in the murky world of metabolic body odor and halitosis, you have to wonder if in reality this means they will have no problems except with transient 'sweaty feet odor' that never seems to be around when a doctor is present. You have to wonder if the same may be true if a 'spot-check' of blood/DNA was taken amongst a sample normal population for any form of metabolic body odor and/or halitosis, depending on whatever enzymes or compounds are involved, including the possibly most common; fecal body odor.

Also, of interest is the use of the word 'heterogeneity'. Presumably they mean the mild cases in the study had 2 known mutants or variants of different type, rather than 2 mutants of the same type (autosomal recessive ?). It looks as if this is similar as to how the loosening of the genetic rule on trimethylaminuria may go, still taught as autosomal recessive, although testers seem to be going towards it being heterogenous ... and possibly both health problems will turn out autosomal dominant for 'mild' cases (if you think transient smelling is mild).

...Initially, two phenotypes with either an acute neonatal or a chronic intermittent presentation were described. More recently, a third group of individuals with mild biochemical abnormalities who can be asymptomatic have been identified through newborn screening of blood spots by tandem mass spectrometry. IVD is a flavoenzyme that catalyzes the conversion of isovaleryl-CoA to 3-methylcrotonyl-CoA and transfers electrons to the electron transfer flavoprotein. Human IVD has been purified from tissue and recombinant sources and its biochemical and physical properties have been extensively studied. Molecular analysis of the IVD gene from patients with IVA has allowed characterization of different types of mutations in this gene. One missense mutation, 932C>T (A282V), is particularly common in patients identified through newborn screening with mild metabolite elevations and who have remained asymptomatic to date. This mutation leads to a partially active enzyme with altered catalytic properties; however, its effects on clinical outcome and the necessity of therapy are still unknown. A better understanding of the heterogeneity of this disease and the relevance of genotype/phenotype correlations to clinical management of patients are among the challenges remaining in the study of this disorder in the coming years.

Hypothesis : what would a thorough examination of a fecal body odor sufferers system look like ?

2010-04-19T18:48:00.000-04:00

The traditional way for sufferers of low-priority quality of life health problems to get help from experts seems to be a trickle-down method from public sector experts funded by government agencies (no disrespect meant. This does seem to be the method our systems currently use). With the coming of the internet, it seems an opportunity that research/help can now be sufferer led, with perhaps the roles of experts and sufferers reversed. Sufferers will be highly motivated and their sole aim will be to find a cure. In the case of bloodborne body odor and halitosis problems, it's an opportunity to understand the medical profile of a sufferer. Whereas the current medical system doesn't seem to pay much attention to complete profiling (TMAU is the only test offered, because of some anecdotal paper in 1970). An athlete is as fit as a human can be, and has no need for profiling in a 'health issue' sense, yet can tell you his current blood biotin level.

Under that premise, this post is an attempt to show where odor sufferers could be as a group with regards understanding the general medical profile of a body odor or halitosis sufferer. With the internet, the discovering of the pattern could be done as a group, as is the aims of MeBO Research, our non-profit organization whose purpose is to research metabolic body odor. The tests suggested are to promote discussion, and not intended as strict advice. Also, once the profile became typically known, its likely there would be no need to 'cover all bases' as is done in this hypothetical listing.

It would seem (until we know any better) that the 4 areas to start looking would be:

The metabolism : both for normal metabolism function and also for unusual metabolites, some of which are odor causing (i.e. what compounds are causing the smell(s). This would often overlap with 'standard' metabolism tests except when looking for totally unexpected compounds

The genetic profile (i.e. looking gene mutations that cause weaknesses etc)

Gut function (gut tests of any sort. Especially to do with digestive function and gut ecology)

Liver function

So with that in mind, here's an opening attempt to define:
What would a profile test of a bloodborne/systemic/metabolic body odor or halitosis sufferer look like ?

To attempt define the odorous chemicals: Malodorous Volatile Organic Compound urine/blood test: A volatile organic compound urine (or blood) test may be the best starting option. This would be looking for any odorous compounds in the system. It would include trimethylamine. Probably it would be best to test for as many VOCs as possible (not just odorous) since it seems that inability to fully metabolize compounds is at the root of the problem, and there are likely many more non-odorous unexpected VOCs in the blood too. After the general pattern has been found, such a complete list may not be necessary. These type of tests are possibly currently possible by local metabolism units of hospitals.

Genetic weakness, DNA test: At the moment the most obvious suspect would seem to be the FMO3 enzyme. But also it would seem wise to check all the main 'xenobiotic enzymes' especially. This would be the main families from the CYP450 (and FMO3), and the 6 main phase2 'conjugating' enzymes associated. However there are many more enzymes, such as dimethylglycine dehydrogenase that have been shown to cause odor problems if not functioning well enough, but the detox ones mentioned seem to be regarded the main players in detox (and in activation of compounds too). Beraring in mind no-one currently seems much interested (or aware) in bloodborne odors.

Gut tests for dysbiosis: There are many of these sorts of tests, many not used by the current medical system. The best known 'outsider' companies being Metametrix and Genova (both associated with functional medicine). Gut dysbiosis does seem a likely factor, but what exactly the pattern is for fecal body odor syndrome is unknown. For this section of the post, helpful tests will be split into 2 categories and are only to give an idea of examples:

Tests accepted by the 'official' medical system :
Small Intestine Bacterial Overgrowth breath test
Gut x-rays, colonoscopies, endoscopies, pillcam
Celiac test
Very conservative parasite test
etc

Tests done by innovative medical companies:
Gut dysbiosis stool tests (includes bacteria, fungi etc). Either a culture test or DNA test.
Liberal parasite test
Leaky gut test
Detox/Xenobiotic enzyme tests (Either functional or DNA)
DNA test of xenobiotic enzymes (Detoxigenomic test)
Dysbiosis urine marker tests
Pancreatic output finction
etc

Vitamin and mineral status:
Vitamins and minerals are often co-factors in enzyme functions, and so it makes sense to at least see if they are part of the pattern of the group. Of the vitamins, B vitamins in particular are often co-factors in function of the phase1 xenobiotic enzymes. B vitamins are also often produced by good flora in the gut as well. Minerals also often play a role as enzyme co-factors. Not just the big minerals but also macro minerals such as chromium, which is a cofactor in the enzyme that changes toxic sulfite into non-toxic sulfate. Again, most of these tests are likely best done by innovative companies.

Amino acid and organic acid tests: (normal metabolism type tests)
Whilst the VOC test mentioned above is more looking for unexpected compounds, these tests are looking more at normal chemicals and metabolism function. There is overlap with the VOC test but at this point both types of tests seem useful.

Liver tests: Of course this would include the traditional liver tests, which mostly look for signs of damage. However it would also include how well the liver handles toxins, which is not something that standard liver tests look for. This usually involves looking for unexpected metabolites in urine. Trimethyamine is an example. Other examples would be looking for any volatile organic compound in urine in particular. This is more to do with genetic variaton than damage. As we can assume, most people with metabolic odors do not have any liver damage.

Example tests:
Genova detoxification profile test. Only any use for a general view
Erythromycin urine test. General test for P450 3A4 enzyme function
Full volatile organic acid urine test

Other tests that may be worth checking

Allergy test:
The official medical system only offers IgE tests, which is the very bad immune reaction. Innovative companies check for IgG responses too, which are much more subtle. This seems not such a priority test, but who knows at this stage ?

This list is intended only to promote discussion and should be thought of as an 'opening statement' to get the group thinking of the opportunities in this area. It is only aimed at metabolic/systemic types of odor problems. It is not intended as advice or should be deemed 'correct'. As a group someday perhaps we can find a way to find out the full typical profile of a metabolic body odor problem of any type.

Hand-held VOC P.I.D. detector for detecting body odor chemicals

2010-04-08T19:12:00.000-04:00

A main problem with systemic body odor in particular, is the inability for the sufferer to smell themselves, and likewise with any 'loved ones' of the sufferer. The reason for this selective anosmia is currently unknown. Because of this, since most systemic body odor cases are likely to be transient, being able to monitor the smells would be very useful. Particularly in finding out which chemicals are responsible for the smells (e.g. trimethylamine).

There will be no specific detector on the market for detecting body odors, under the premise (probably wrongly) that there is not a market for it. For possible experimental alternatives, we are looking at other detectors on the market for certain industries.

A methane detector

At the moment our assumption is something like a Volatile Organic Compound Photo Ionization Detector, such as made by Rae Systems. In our case, perhaps a detector that can sense chemicals in parts per billions would be most suited. At the moment the most suitable portable VOC PID would seem to be one like the ppbRae 3000, which retails at around $6000. It can be rented out, probably at around $300 a week.

Maybe someday we can rent such a detector, for say a meetup, or to study someone over a week. We must assume the detector may not be sensitive enough for such a use, but be hopeful that it is.

Nashville Meetup discussion Nigel Manning's paper and handouts

2010-03-30T20:48:00.017-04:00

HANDOUTS DISTRIBUTED AT THE NASHVILLE 2010 MEETUP

‘TMAU – diagnostic testing at Sheffield Children’s Hospital’ by Nigel Manning, Principal Scientist, Sheffield Children’s Hospital,Sheffield, England
Nashville Meetup Handout: Links and references to Body Odor/Halitosis related professional journals, information on our upcoming new non-profit organization, MEBO Research, Inc. and the Florida International School of Law Legal Clinic, and copies of some blog posts

We have received a paper from Nigel Manning, Principal Scientist, Sheffield Children’s Hospital, Sheffield, England,which we discussed at length on Sunday at the Nashville Meetup, written by him entitled, ‘TMAU – diagnostic testing at Sheffield Children’s Hospital’. All TMAU urine tests in the UK, Ireland, and some from other parts of the world are done in his lab. Nigel wrote this paper specifically for our meetup, and I wanted very much to discuss it with everyone on Saturday so that we may all learn from it. However, since I was sick, Glenna was kind enough to go over it on Saturday, and we discussed it again on Sunday when I was able to participate as well. More about our discussion of this paper will be forthcoming on another post.

In this six-page paper, Nigel explains to us the formula he uses to arrive at either a Primary TMAU or a Secondary TMAU diagnosis. In the US, only the Primary TMAU diagnosis is used.

Nigel explains in his paper that the liver enzyme FMO3 not only oxidizes TMA, but in addition, oxidizes a wide range of substrates including many drugs. He explains,

Due to the broad spectrum of substrates oxidized by FMO3, TMAU1 patients may suffer from adverse reactions with many drugs including codeine, tamoxifen, ketoconazole, nicotine, cimetidine, ranitidine and phenothiazine. Hypertension may result from ingestion of red wine and cheese (and chocolate), which produce the neurotransmitter tyramine, another FMO3 dependent compound. Many people suffer from migraines associated with tyramine containing foods and perhaps FMO3 deficiency may explain some of these cases, but overall this demonstrates the adverse medical consequences of TMAU1 as well as the odour related psychosocial aspects.

Nigel also elaborates on the condition diagnosed as Secondary TMAU (TMAU2). He defines this diagnosis as being an acquired form of TMAU where TMA excretion is high even though FMO3 activity is normal.

Most TMAU2 patients produce too much intestinal TMA due to excessive bacterial growth of TMA-generating species. The TMA burden is so great that FMO3 oxidation produces large amounts of TMO but (in most cases – but not all) is still unable to oxidize enough TMA to prevent an excess…

…TMA itself is generated in the large intestine by bacterial degradation of compounds such as choline (high in liver, eggs and beans/peas), carnitine (meat) and TMO [TMA-oxide] from seafood (TMA from fish ‘spoilage’ has been attributed to several species of Vitrio and Shewanella bacteria)…

In this paper, Nigel provides us with three graphs,

TMA testing- urines analysed at Sheffield Children’s Hospital: of 1,150 urines tested from 716 individuals from 1997 tP 2009, of which 379 results indicated significant TMAU.
Free Trimethylamine v Free TMA / TOTAL [%] – end of 2009 n = 716: This graph is a summary of samples analysed from 1998 to 2009 – TMAU1 and TMAU2 differentiation by the ratio of Free TMA to Total TMA (TMA+TMA-oxide). Free TMA normal range 1-11.
A case of choline load to aid diagnosis in a case of TMAU (results indicated a treatable TMAU2)

In the Discussion section of his paper, Nigel discuses the treatment of both TMAU1 and TMAU2 and the types of odours associated with these conditions,

…the type of odour is often difficult to describe, but ranges from ‘chemical’ to faecal’. ‘Rotten fish’or ‘ammonia-like’ is not always mentioned, but TMAU seems to have become a focus for all malodours, possibly due to awareness of the disorder, the availability of a test and the possibility of a diagnosis.

A significant cohort of sulphurous or faecal odours have been reported by individuals who contact the laboratory. This may be another enterobacterial problem, but although Shewanella species are known to produce both hydrogen sulphide and TMA, we have yet to measure an increased TMA or TMO as a secondary marker for enterobacterial overgrowth in these cases.

FOR ADDITIONAL INFORMATION, see Parts 1 & 2 of Nigel Manning's interview for this blog, along with other experts' interviews.

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

Nashville 2010 Meet-up : YOU CAN BOOK YOUR SUITE

2010-03-08T18:31:00.008-05:00

USA Body Odor & Halitosis get together
Embassy Suites
Nashville Airport Hotel
19th, 20th, 21st March 2010

Nashville: Have you booked ?

JOIN OUR 1ST ANNUAL MEETING

TO DISCUSS OUR SOON TO BE NON-PROFIT ORGANIZATION, MEBO RESEARCH, INC.

The time has come, and we can finally book our suite for our Nashville 2010 Body Odor and Halitosis Meet-Up at the Embassy Suites Nashville-Airport Hotel to be held on Saturday and Sunday, March 20th and 21st, 2010. The hotel has guaranteed us a rate of $99/night for the 19th, 20th and 21st of March, and may also extend the rate (subject to availability) for 2 days earlier and/or 2 days later if you book early enough. Bookings can be done online or over the phone, but extensions are offered only over the phone.

Special Accounts: MEBO Research

Booking Group/Convention Code: MBR

Booking options:

1. ONLINE RESERVATIONS: for the $99/night rates

Availability dates: anytime between 19MAR2010 and 22MAR2010
Smoking or Non-Smoking
King or Two Beds (double beds), or No Preference

Special Accounts: Group/Convention Code: MBR

2. PHONE RESERVATIONS: In you wish to reserve for the $99/night rate two days before or two days after subject to availability, you need to call Reservations at, 1-615-871-0033 or 1-800-HILTONS (1-800-445-8667)

Please see the following posts for more specific details about this meetup and accommodations.

Rates per Suite (Single and Double Rate)
King bed Non Smoking Suite $99/night
Two Double Bed Non Smoking Suite $99/night
Governors Suites Non Smoking Suite $150

Room rates are quoted net non commissionable and exclusive of local taxes and fees.

Quoted rates will be offered, based on availability, to meetup attendees 2 days before and 2 days after the above dates.

Room rates include : complimentary daily full breakfast per person, and complimentary daily 2-hour Manager’s Reception in the evenings with alcoholic and non-alcoholic beverages and snacks, and complimentary airport shuttle.

If you need assistance in transportation to the meet-up from your home, such as looking for anyone interested in carpooling, or in getting good air fares, please send me an email.

I do hope you can join us! It will be a very worthwhile and meaningful experience for us all! See you there.

María

María de la Torre
President and Executive Director

www.meboresearch.com
maria.delatorre@meboresearch.com

MeBO accepted in FIU Legal Clinic for entity formation as 501(c)3 non-profit org in US

2010-03-06T23:30:00.007-05:00

I am happy to announce that MeBO Research has been accepted by the Legal Clinic Program of the College of Law of my Alma Mater, Florida International University, for pro-bono legal representation. They will advise us on how to best form an entity. Under the supervision of faculty who are experienced legal practitioners, the program will represent us in registering MeBO, first as a company, and then as a 501(c)3 non-profit organization, so that we can proceed to pursue grants from renown private and government Foundations to support research and treatment of TMAU, other FMO3 deficiencies and other metabolic causes of body odor, the genetics of body odor conditions, microbial causes of systemic odor (including but not limited to the digestive tract, diagnostic and therapeutic (odor management and mental health) possibilities, and other such causes. John Little, Attorney at Law, Adjunct Clinical Professor, will be the supervising attorney for our case.

After finalizing the formation of this 501(c)3 non-profit organization, I will then apply to the FIU College of Business Clinic to see if they will also assist us pro-bono setting up a transparent accounting system, so that all members and grantors can see where the funds are being disbursed. It is MeBO’s goal not only to effectively meet all the legal federal tax filing requirements. In addition, we hope that the Business Clinic may also assist us in showing us how to be most effective in the grant-writing process, as our volunteers are standing by to proceed once we are a 501(c)3 organization.

The Community Development Clinic at Florida International University in Miami, Florida is an interdisciplinary program that provides their clients with legal and business assistance as needed to become a nonprofit organization and to operate it effectively. All of us at MeBO Research are most appreciative of the FIU Community Development Clinic reaching out to the community to help non-profit groups who are often unrepresented because of the high cost of legal services.

The initial filing fee is almost $100 to register MeBO Research as a company, which should be initiated within a month. Afterwards, it will cost approximately $800 to file for a 501(c)3 non-profit status, a process that will probably begin in August 2010. This $800 filing fee should generate a good return on investment, as it is the only way MeBO Research will have the leverage needed to receive tax-deductible grants from Foundations, since according to their respective by-laws, most can only give grants to 501(c)3 non-profit organizations.

María de la Torre
President and Executive Director
MEBO Research
maria.delatorre@meboresearch.com

FIU FAST FACTS:

FIU Law grads passed the Florida Bar at the highest rate in February 2009.
FIU Law ranked 8th best value in the U.S. by The National Jurist.
FIU Law faculty ranked 2nd most diverse in the U.S.
FIU Law educates highest percentage of Hispanic students in the U.S.

Expert overseeing MEBO Research Studies

2010-02-18T10:05:00.000-05:00

We are most grateful to Dr. Irene Gabashvili, PhD, for overseeing MeBO Research's exploratory trials. She brings with her years of experience in biomedical industry and academia. Dr. Irene is an Adjunct Professor of Bioinformatics and Biotechnology at San José State University.

Throughout her career, Dr. Gabashvili has been interested in the molecular, cellular, and physiological mechanisms of health and disease. She developed models and data analysis approaches and experimentally studied physics of microbial infection, chemistry of light and radiation effects on living matter, plant enzymes, structural basis of antibiotic resistance, human pathologies dependent on variation in mitochondrial genes, development of sensory apparatus and aging, inheritance and environmental factors contributing to the development of diseases.

Dr. Gabashvili was overseeing exploratory trials and data mining studies in the past, working with medical doctors and supervising MD students. For example, she studied analysis of blood biomarkers to determine patterns of longevity at the Center of Genetic Ecology. She worked in microbiology, molecular biology, biochemistry and biophysics labs and was utilizing state-of-the-art techniques and instrumentation to characterize macro- and micro-molecules causing or protecting from disease. She continues to collaborate with experimental labs, in particular employing novel chromatographic and mass spectrometry approaches to identify disease biomarkers.

Dr. Gabashvili has developed software tools and IT infrastructure to support research and clinical processes. She worked with and for Hewlett Packard, Merck, Pfizer, Johnson & Johnson, Novartis, etc. Her academic partnerships include renown scientists and clinicians from Stanford and Harvard Universities.
Dr. Gabashvili demonstrated a concerted interest in applying her wealth of knowledge to MeBO's research aims for the betterment of our community. She is especially interested in clinical nutrition and the complex relationship between the human immune system with trillions of microbes populating human beings.

Irene Gabashvili, PhD
Expert Overseeing MEBO Research Studies
(PowerPoint presentation for our community 'Microbe and Us')
Director and Scientific Advisor, MEBO Research
irene.gabashvili@meboresearch.org
http://www.linkedin.com/in/igabashvili
http://www.biology.sjsu.edu/facultystaff/gabashvili.aspx

Test webinar yesterday : 'Microbes and us' by Irene Gabashvili PhD

2010-02-13T11:38:00.000-05:00

Thanks to Irene for setting up and talking in the test webinar yesterday, and to everyone else who attended the test webinar (about 12 at any time). Irene gave a slideshow about the microbes that live in/on us for 30 minutes, and then answered a number of questions from the audience. Most were text questions, and Arun appeared direct on video to talk directly to Irene and the audience. Apologies to Arun, since there was a technical issue at this stage.

We were unable to record the presentation due to technical difficulties.

Vokle will not be the program used for hosting the other Body Odor experts, but for free it was a worthwhile event. Hopefully everyone enjoyed the event and of course anyone can host an event on Vokle for free at anytime.

Reply from Dr. Jennifer L. Greenberg, PSY.D., RE Survey

2010-02-02T13:43:00.003-05:00

I have received a reply from Dr. Jennifer L. Greenberg, Psy.D., OCD and Related Disorders Program, Massachusetts General Hospital and Harvard Medical School, http://www.mghocd.org/, in which she acknowledges that "body odor concerns are understudied and not very well understood at this time...We are very hopeful this will lead to a collaborative effort that will help us all better understand the varying types of body odor concerns and those who suffer."

I will let her email message speak for itself, and post it here with my reply to her below. Each sufferer and family member is welcome to make his/her own personal decision whether to fill out the survey, http://www.surveymonkey.com/ORSSurvey, and to email her any additional comment or information, as she is welcoming it. Please note the personal information disclosure at the beginning of the survey. You may opt to not provide this info online, and provide it later by other means.

Dear Maria,

Thank you for contacting us regarding our survey. As you know, body odor concerns are understudied and not very well understood at this time. We are very excited by the mutual interest and discussion generated by our survey. We are very hopeful this will lead to a collaborative effort that will help us all better understand the varying types of body odor concerns and those who suffer. This is not a treatment study, but rather, our goal in conducting this research is to simply learn more about the symptoms and experiences of individuals with body odor concerns. For some individuals, the source of the body odor may be a diagnosed (or undiagnosed) medical condition; however, for others, no perceivable body odor is emitted, yet they spend hours/day worried about a perceived odor. We believe that all individuals with body odor concerns may suffer immensely with worry about the odor (or perceived odor) and its impact on their social/school/work life. In filling out the survey, we welcome your readers to write in about their specific symptoms, treatment experiences and/or medical diagnoses in an effort to help us better understand their experiences.

We hope to learn more about these various experiences, and look forward to a continued, fruitful dialogue.

Best regards,
Jennifer L. Greenberg, Psy.D.
OCD and Related Disorders Program
Massachusetts General Hospital
http://www.mghocd.org/

My reply to Dr. Greenberg:
(cont.)

Dear Dr. Greenberg,

I am so encouraged by your email. I will post it in my blog and in the forums to encourage all to give you feedback. Thank you so very much for your very compassionate and understanding position. Yes, we all suffer at a very deep level for years on end, with no hope in sight. I am certain that with better medical diagnosis of the causes of odor, we would be able to keep our mental and emotional focus in check, but all this uncertainty only triggers the most torturous and tormenting fears and totally disrupts not only our social life but also our ability to maintain employment, many college graduates give up and abandon their careers as the odor is a major obstacle, and even worse, some bright and inspired college students drop out because they can't stand the verbal attacks from not only classmates but even some professors.

Again, THANK YOU, for looking in our direction. If there is anything I can help you with in your studies, please don't hesitate to let me know. We are all so hopeful in that you would seek to understand our emotional/mental state and perhaps write an article or two in the professional journals to explain it to the rest of the mental health community???

Warmest Regards,

María de la Torre
Director
MEBO Research
786 228-6880

P.S. I leave you with a quote from one of our posters:

Hi TMAU sufferers
I was diagnosed in 2005 after 20 odd years of not knowing what the cause was.It took a long time for me to pluck up the courage to seek help, though at the time GP was unhelpful as he thought it was all in my head and I was just paranoid.
I was in a relationship for 20yrs and my partner was unable to smell any offensive odour and by the way neither can I, which is frustrating and therefore difficult to establish if anything ie food stress sweating makes the condition worse.
I did eat fish last time about 20 years ago and I could smell it in my nostrils if I took a hard short breath through my nose and my father did comment that he could smell fishy odour.No surprise I didn't eat fish again apart from once testing if it happened again and the smell was not present in my nose.
I think it is very different for each individual
The only comments I have ever had are when I have been at work like in my presence, What's that smell? to aftershave being sprayed on me and a wash bag being thrown at me.
It makes you feel embarrassed, ashamed, angry,paranoid,frustrated and you just want to return to your home and not go out again.
I do think that my condition is not as bad as other TMAU sufferers and I am able to still be employed as my job involves travel and I work with different people almost all the time and not in an office environment with the same people
It is a struggle and I am always on my guard and only truly relax when I'm at home.
The biggest relief for me was finding out that I wasn't going mad and just paranoid and that I do have a metabolic disorder.
Hopefully I will get to chat to you at some stage and thank you for reading my story lots more to say but I think enough for now.

Hugs

Response to Olfactory Reference Syndrome Survey MGH OCD and Related Disorders Program Survey

2010-01-30T20:40:00.003-05:00

The following comment was posted in the comments of the blog and MeBO Research website. The survey is about Olfactory Reference Syndrome (ORS), which is a diagnosis the psychiatric community has come up with for someone who believes he/she has odor, but the mental health community considers it to be all in the sufferer's mind, since the therapist doesn't detect the odor.

Think you smell bad?
Do others say you smell fine?
For a $10 gift card, take survey.
http://www.surveymonkey.com/ORSSurvey

(MGH OCD and Related Disorders Program)

Information from the survey

Why is this research study being done?
Very little is known about individuals with body odor concerns or Olfactory Reference Syndrome (ORS). Therefore, the goal of the present study is to learn more about the symptoms experienced by individuals with body odor concerns, past treatment experiences, and how the disorder may interfere with life. We hope that this information will help us to address diagnostic questions and treatment needs, and eventually improve the quality of care for people who suffer from perceived body odor concerns.

Who do I contact if I have questions about this research study?
The principal investigator for this study is Sabine Wilhelm, PhD. She can be reached at (617) 726-6766 any time between 8 am and 5 pm EST, Monday through Friday.

You may also call Dr. Jennifer Greenberg, the co-investigator, with any questions. She can be reached at (617) 726-5374 any time between 8 am and 5 pm, Monday through Friday.

MY REPLY EMAIL REGARDING ABOVE COMMENT WRITTEN IN THIS BLOG
by the Massachusetts General Hospital and Harvard Medical School

Obsessive Compulsive Disorder Clinic and Research Unit

Dear Drs. Wilhelm and Greenberg:

Thank you for taking interest in posting in my blog. I am encouraged that your organization is a “Research Unit” of the Harvard Medical School, and that you have reached out to us. I hope that others in this community assist you in understanding what it is like to live in any society with an above normal odor condition. In this email, I would like to present to you the widespread opinion of the body odor community as to how you can best help us, and how we almost unanimously, if not totally unanimously, about ORS. Basically, getting an ORS diagnosis and treatment is equally as painful as the discrimination we get from society.

I will post your comment along with this email response in my blog. I do look forward to receiving your reply to this email, which I will also post. Ultimately, my aim is to start a dialogue between us, and to encourage feedback from our community as well, so that we can resolve a great deal of misunderstanding that exists between the mental health field and body odor sufferers regarding the misdiagnosis of Olfactory Reference Syndrome. I hope this email clarifies how body odor sufferers feel about the diagnosis.

TOPICS ADDRESSED IN THIS EMAIL ARE THE FOLLOWING:

1. An Olfactory Reference Syndrome (ORS) diagnosis and treatment should be immediately suspended until further research is conducted to conclusively prove or disprove its validity. This diagnosis totally lacks any and all objective scientific basis as the sense of smell is extremely subjective, and the diagnosis is not based on any significant battery of odor-related tests that specifically targets the identification and count of odorous compounds in the body. Please note that without exception, all persons diagnosed with Trimethylaminuria (TMAU) has been previously told more than once by either a doctor or family member or both that they do not smell and that it is all in their minds. Yet, urine and blood tests substantiates that they do indeed have a genetic body odor condition, and as a result, have suffered through countless injurious social encounters.

The ORS diagnosis is not aimed at identifying the patient’s reality, but instead at creating a desired illusionary reality based on therapist's subjectivity.2. It is recommended that extensive research be carried out to question the validity of the ORS diagnosis by using especially trained service dogs to determine whether a person does manifest a specific type of body odor intermittently. For example, a person diagnosed with Trimethylaminuria (TMAU) would have a service dog that when prompted, would identify and notify the sufferer whether the odor of trimethylamine (TMA) is emitted at that particular time. This could also be extended to other odorous compounds, such as a rotten-egg odor (sulfur-type), fecal matter odor (skatole, indol), pungent odor (ammonia), etc., which when emitted by BO sufferers, adversely disrupts his or her daily social life.

3. Exchange of information: As a community, we are planning to carry out a Body Odor Webinar Series, in which scientists and medical doctors in the United States, the United Kingdom, and Ireland who have carried out significant scientific research on the genetic explanation for TMAU, FMO3 enzymes, and other BO causes, have agreed to participate. In these presentations, they will explain the causes and triggers of odorous conditions, such as genetic pathways, metabolic enzyme deficiency, hormonal influences, environmental influences including chemical sensitivities, diet, and microbial flora imbalance.

Frequently, these conditions manifest themselves with an unpredictable intermittent odor, which may not always be present during medical examination, but may appear at the most inopportune moments. For additional information on the experts’ opinion, please see the interviews we have done with them already that are posted in this blog. Without exception, they recognize that sufferers do manifest intermittent body odor.

4. Injurious diagnosis: A diagnosis of Olfactory Reference Syndrome or any other related OCD diagnosis can be profoundly damaging to a person who suffers from intermittent body odor because the treatment for these conditions is geared toward denying the person their true reality and to instead force the person to lie to themselves even as the reality continues to replay itself throughout their lives. The only morally and ethically acceptable diagnosis and treatment is one that is based on scientific evidence through diagnostic testing, and there are no tests in the medical system that check for odorous compounds emitted through the skin, breath, or any other cleansing systems of the body, except TMAU only. Therefore, an ORS diagnosis is based strictly on extremely subjective grounds – the therapist’s own olfactory system. The ORS diagnosis is not aimed at identifying the patient’s reality, but instead at creating a desired illusionary reality based on therapist's subjectivity.

RESEARCH RECOMMENDATION:
Utilize specially trained service dogs to identify and notify a body odor subject when he or she begins to emit a particular odor. In the wide range of olfaction, we have the dogs in the hyperosmia category and to the opposite end of the spectrum, we have humans who may suffer from anosmia. In between these two, there is a wide range of olfactory range levels. It only stands to reason that ORS is an extremely unscientific diagnosis solely based on where in the olfactory spectrum the patient’s mental health practitioner falls. ORS should never be a viable diagnosis of the 21st century unless a trained service dog or a very highly sophisticated electronic equipment is used to measure the levels of all known odorous compounds that produce the type of odor a sufferer complains of DURING THE PRECISE MOMENT OF A FLARE-UP.

BENEFIT OF A RESEARCH STUDY: To carry out scientific evidence to support or disprove the controversial diagnosis of Olfactory Reference Syndrome and the other quasi-disorder diagnoses of Cacosmia, parosmia, phantosmia will promote mental health and the much needed treatment of sufferers. At the present time, there simply is no sufficient scientific evidence to support the current “mental health” practices of diagnosing ORS and the current treatment is primitive at best. Instead of pursuing the truth, the patient is taught to erase his experiences and to develop a habit of misinterpreting what has been expressed to him in society by those who complain about his odor.

This a very dangerous practice that deeply touches the basic psychological core of an individual who consequently becomes extremely mentally unstable, as he will feel that he is unable to discern truth from fiction in his life – and all this damage is caused without scientific evidence as the patient has not been tested for these odorous compounds! The therapist has no idea whether the person does emit an odor or not in a social setting, and the diagnosis is unfounded as it is without scientific evidence.

Each and every person in our community who has been diagnosed with TMAU will tell you that he or she too have suffered deep emotional injury promulgated by the mental health community and the medical community with an unfounded diagnosis of ORS and all its implications. It is the moral and ethical duty of the scientific community, the medical community, and the mental health community to not practice the use of this diagnosis and treatment until much more extensive research has been exhausted. On behalf of the international body odor and halitosis community, I implore you to pursue research in this area, and to stop the mental health community from further injuring its patients as a result of ignorant and unfounded diagnoses until such time that all research options have been exhausted.

Respectfully yours,

María de la Torre
Director
MEBO Research
maria.delatorre@meboresearch.com
786 228-6880

New paper from Dr. Preti: from genes to axillae

2010-01-22T08:59:00.000-05:00

Genetic influences on human body odor: from genes to the axillae.

Preti G, Leyden JJ.
Monell Chemical Senses Center, Philadelphia, Pennsylvania 19104, USA.

Comment on:

* J Invest Dermatol. 2010 Feb;130(2):529-40.

Several groups have identified the characteristic axillary odorants and how they arrive on the skin surface, pre-formed, bound to water-soluble odorless precursors in apocrine secretions. In the current issue, Martin et al., (2010) describe the relationship between the production of axillary odorants and variants in the ABCC11 gene. Individuals who are homozygotic for a SNP (538G>A) were found to have significantly less of the characteristic axillary odorants than either individuals who were heterozygotic for this change or those who had the wild-type gene. The 538G>A SNP predominates in Asians who have nearly complete loss of typical body odor. ABCC11 is expressed and localized in apocrine sweat glands. These findings are remarkably similar to the ethnic distribution and expression patterns for apocrine apoD, a previously identified carrier of a characteristic axillary odorant.

ABCC11 gene and body odor : Abstract on pubmed

Dr George Preti of the Monell Chemical Senses Center along with another researcher, JJ Leyden, have just released a medical paper about armpit body odor. They mention how recent research has demonstrated that a variant of the ABCC11 gene common amongst some Asians seems to indicate that they will produce naturally less known underarm odors if they are homozygous for the variant SNP (538G>A). Those who are heterozygous for the variant, or have the wild type, produce normal amounts of the odors. This variant is associated with people who tend to have a dry brittle grayish earwax.

Related links
Gene ABCC11 is expressed and localized in apocrine sweat glands.
Ear wax, body odor, and ABCC11 gene
A strong association of axillary osmidrosis with the wet earwax type determined by genotyping of the ABCC11 gene

Bad drug reactions in people with systemic body odor

2009-11-29T23:28:00.000-05:00

Systemic body odor/halitosis : Do you have bad reactions to drugs/medicines ?

People with systemic body odor and/or halitosis often mention they have bad reactions to drugs. This isn't surprising, since drugs and odorous compounds are probably often dealt with by the phase1/phase2 biotransformation enzyme group of enzymes, of which FMO3 is one. In general, we have 2 'layers' of these enzymes, phase1 and phase2 (in truth there are many exceptions to the 'rules'). FMO3 is one of the phase1 enzymes, along with the CYP450 family of enzymes which is regarded as the 'main player' in phase1 (perhaps due to ignorance of FMO3). These enzymes are often involved in oxidation reactions (such as FMO3 oxidizing trimethylamine to trimethylamine-n-oxide).

FMO3 is very commonly involved in many oxidation reactions (probably 1,000s of substrates). Often, a substrate can go an alternative slower route if for some reason the preferred enzyme is saturated (though not trimethylamine, apparently).

In this paper, the researchers looked at the 'clearance' from the blood (detoxification) of the drug Voriconazole. They say that most of the detoxification of voriconazole in humans is done by CYP3A4, CYP2C19, and flavin-containing monooxygenase 3 (FMO3). Apparently in children the clearance rate is faster because they don't use CYP3A4 so much.

Although researchers learn more about these enzymes, each paper must be taken with some trepidation, in that often on the journey to agreement about facts, they contradict each other. However as time goes by a picture emerges.

Whilst having no FMO3 enzyme does not seem to result in death or visual illness (those with reduced FMO3 function are expected to live a normal lifespan), the enzyme seems to be involved in 1000s of substrate oxidation reactions, so it is likely that most FMO3 research is more likely going to be due to bad reactions to drugs (or uselessness of drugs, these enzymes activate, as well as detoxicate) rather than for trimethylaminuria, which the medical community probably has no interest in. Not unless we can promote or petition for research ourselves.

In Vitro Hepatic Metabolism Explains Higher Clearance of Voriconazole in Children versus Adults: Role of CYP2C19 and FMO3.
Yanni SB, Annaert PP, Augustijns P, Ibrahim JG, Benjamin DK, Thakker DR.
1 The University of North Carolina at Chapel Hill;

Voriconazole is a broad spectrum antifungal agent for treating life threatening fungal infections. Its clearance is approximately three-fold higher in children compared to adults. Voriconazole is cleared predominantly via hepatic metabolism in adults, mainly by CYP3A4, CYP2C19, and flavin-containing monooxygenase 3 (FMO3). In vitro metabolism of voriconazole by liver microsomes prepared from pediatric and adult tissues (n=6/group) mirrored the in vivo clearance differences in children versus adults, and showed that the oxidative metabolism was significantly faster in children compared to adults as indicated by the in vitro half-life (T (1/2)) of 33.8 +/- 15.3 versus 72.6 +/- 23.7 min, respectively. The K(m) for voriconazole metabolism to N-oxide, the major metabolite formed in humans, by liver microsomes from children and adults was similar (11.0 +/- 5.2 muM versus 9.3 +/- 3.6 muM, respectively). In contrast, apparent V(max) was approximately 3-fold higher in children compared to adults (120.5 +/- 99.9 versus 40.0 +/- 13.9 pmol/min/mg). The calculated in vivo clearance from in vitro data was found to be approximately 80% of the observed plasma clearance values in both populations. Metabolism studies in which CYP3A4, CYP2C19, or FMO was selectively inhibited provided evidence that contribution of CYP2C19 and FMO toward voriconazole N-oxidation was much greater in children than in adults, whereas CYP3A4 played a larger role in adults. While expression of CYP2C19 and FMO3 is not significantly different in children versus adults, these enzymes appear to contribute to higher metabolic clearance of voriconazole in children versus adults.

http://www.ncbi.nlm.nih.gov/pubmed/19841059

Trimethylaminuria article in 'The exceptional parent'

2009-11-17T05:00:00.000-05:00

This is a 2003 article about attitudes towards trimethylaminuria by Rick Rader, a 'medical futurist', logically predicting the future for people with neurodevelopmental problems. He was invited to the 2nd Trimethylaminuria workshop in 2002 to speak about the Psychosocial Aspects of The Trimethylaminuria Experience.

His initial attitude towards TMAU, when compared to other health disorders, is probably typical, but as he meets sufferers he realises what a devastating mental affect the condition has on the sufferer. Indeed, it should be regarded as a disability.

...In many ways, trimethylaminuria is a model of the entire negative discordance directed towards people who seem different to others. It's the template disorder for all conditions that cause people to disengage from social affiliation. While social affiliation is not unique to our species it is indeed the center of our existence, our cement and our prevailing universality.

Trimethylaminuria seems to be a disorder that most certainly could have had its roots in classic mythology. These spellbinding stories are used to explain our random and threatening universe, natural phenomena, character flaws and our dark side. There must be a tale in Norse mythology that explains how this curse came to be. It seems too significant an entity to blame on the flavin-containing monooxygenase 3 enzyme (FMO3). Surely Odin could have grown tired of dealing with the wolf Fenrir, the monstrous offspring of the fire god Loki, and burdened him with the eternal odor of Jormungand, the giant sea serpent. The stench of a rotting sea serpent would probably get any Norse god's attention. I like that explanation much better than that of some enzyme gone amok...
... When eight-year-olds with trimethylaminuria confide in you that they wish they had cancer or needed to use wheelchairs or had third-degree burns, so they wouldn't have to explain the unexplainable to their classmates, you get a clear focus on the depth of their despair. When their embarrassment and social phobias confine them to closets and shut them off from school, sports, parties, friends and the richness of life, then you can start to appreciate that disabilities come in all forms. Extrapolating from the definition of art, anything that disables is disabling...

Full article
Rick Rader's 2003 trimethylaminuira article : On being downwind of disrupted lives

The UPSIT Test (scratch and sniff odor home test)

2009-09-02T09:34:00.000-04:00

Probably the main reason that body and halitosis is still around, and metabolic body odor is not accepted as a medical problem, is because usually the sufferer cannot smell themselves. Most with metabolic body odor would seem likely to be transient, and on a visit to the doctor there's a good chance they do not smell at that time nor know how to 'provoke' smelling. So as far as the medical industry grandees are concerned, there is little evidence of the problem.

Usually fellow sufferers, possibly only of the same type of body odor or halitosis, cannot smell each other either, and possibly it is the case that perhaps a small percentage of non-smelly people can smell sufferers mostly either (for instance, perhaps genetic carriers of a metabolic body odor cannot smell sufferers often). Dr John Cashman estimates that perhaps 8% of the population cannot smell trimethylamine when others can. As examples; perhaps those with 'mild' isovaleric acidemia cannot smell someone else with the same problem, but they can smell someone with trimethylaminuria ... and vice versa.

This 'selective anosmia' does not seem to apply only to metabolic body odors, but to all types of body odor and halitosis. For instance people with 'classic' body odor or 'classic' halitosis (the surface-type odor problems) seem not able to smell themselves. It may also seem likely that in these cases that 'loved ones' cannot smell them either. For instance, perhaps you know someone who is well respected and has a wife and children but has a habit of developing a body odor over a number of days then it disappears (after bathing) and starts again. The question is, can his wife and children smell him ?

In medical terms, the only current explanation would be 'anosmia', where people cannot smell certain smells. The current 'home test' for this would be the University of Pennsylvania Smell Identification Test (known as the UPSIT test). This is basically a 'scratch and sniff' test of 40 odours. The University of Pennsylvania has a smell and taste clinic, seemingly opened by the NIH. Someday perhaps there will be body odor and halitosis research centers and clinics opened by the NIH.

The UPSIT can be purchased from sites such as this for around $50 including everything needed.
Example seller : sensonics.com UPSIT Test

Although it may be an interesting test to do, it's not known if it will provide any clues to the mystery of metabolic body odor and halitosis (or other types).

Note : Unfortunately, although most body odor and halitosis sufferers cannot smell themselves, the anecdotal evidence seems to be that they can smell the smells from other sources other than through the skin. So the 'body odor/halitosis anosmia' does not seem to be as simple as being unable to smell certain smells, period. For instance, most people likely can smell a fish rotting, which presumably means they can smell trimethylamine from that source. There is no current explanation for this 'quirk'. A speculative guess would be that if your bloodstream has a certain level of 'smelly' toxins, then the 'smell receptor bar' is set higher than a normal person.

Other links
University of Pennsylvania Smell & Taste Center

MEBO RESEARCH, INC

THIS BLOG IS NOW CLOSED

What is involved in creating an International Test Program

Exciting changes in Mental Health Field re Olfactory Reference Syndrome

Where we've been and where we're going

MEBO and Eliapharma now offering single sample TMAU urine test for $80 plus fees and shipping

IRS has received MEBO Research's 501(c)3 Charity Application

Video Testimonial of Crystal Y

Interview : Dr John Cashman of HBRI in San Diego

MEBO and Eliapharma TMAU Testing and future research goals

MEBO and Eliapharma TMAU Testing Update 4

Washington DC 2011: You can book MEBO’s 2nd Annual Meetup

MEBO and Eliapharma TMAU Testing Update 3

Ways to raise awareness of Body Odor Conditions in the medical community

1975 Science paper : 7% of population could not smell trimethylamine

INTERNATIONAL TMAU TESTING UPDATE 2

INTERNATIONAL TMAU TESTING UPDATE

Spring 2011 Meetup in Washington DC

More about TMAU testing through MEBO Research

TMAU Test with Eliapharma through MEBO Research

International TMAU testing in Canada & USA : Special Group Rates

Thames Festival Meetup 2010

MEBO'S Article in the American Academy of Pediatrics

MEBO Research Raising Awareness Campaign Flyer

Cross-Over Reactions : Possible cause of TMAU2?

Carnitine : not just choline to be avoided in TMAU diet

Letter for doctors RE TMAU and Testing from Nigel Manning

Nigel ManningPrincipal Clinical ScientistDept. Clinical ChemistrySheffield Children's HospitalSheffield

1999 Letter in the Lancet about 'periodic' Trimethylaminuria

1975 Science paper : 7% could not smell trimethylamine

MEBO Campaign: Raising Awareness in the Medical Community

Transdermal sensors : in theory could monitor body odors

Raising Social Awareness in the Mental Health Field

'Microbes and Us' Slide presentation

Olfactory Reference Syndrome paper published in PubMed

More about the recent Olfactory Reference Syndrome press briefing by Dr Katharine Phillips

New Trimethylaminuria document from Nigel Manning

ABC News article on Olfactory Reference Syndrome

MEBO Research, Inc. now Incorporated in State of Florida, USA

Does underarm body odor have a genetic factor ?

UK Trimethylaminuria testers can contact Nigel Manning to ask questions about their results

HBRI doing TMAU urine (phenotype) testing again

HBRI accepting samples for TMAU DNA testing again

Genetics of Hyperhidrosis Study

Your MD can do the TMAU urine test via the Mayo Clinic test service

Trimethylaminuria testing in the USA : Denver Colorado

Resumed TMAU urine testing at University of Colorado Denver through Monell Center

Arkansas Children's Hospital will now allow TMAU urine testing

Differences between Trimethylaminuria urine testing

Carry Wilson autobiography : The foul body odor that almost killed me

Alice Mata TMAU book now available as an ebook

TMAU genetic testing in Spain

Systemic body odor and/or halitosis sufferers in Ireland can be referred to Dr Eileen Treacy in Dublin

TMAU (Trimethylaminuria) test center in New Zealand (urine test)

Testing for Trimethylaminuria in Australia : One person's experience

New FMO3 paper from Japan

Dimethylglycine dehydrogenase enzyme (DMGDH)

1999 paper : 'Fish odor' case due to dimethylglycine

Isovaleric Acidemia: sweaty feet syndrome

2006 paper on Isovaleric Acidemia : 'sweaty feet syndrome'

Isovaleric acidemia: new aspects of genetic and phenotypic heterogeneity

Hypothesis : what would a thorough examination of a fecal body odor sufferers system look like ?

Hand-held VOC P.I.D. detector for detecting body odor chemicals

Nashville Meetup discussion Nigel Manning's paper and handouts

Nashville 2010 Meet-up : YOU CAN BOOK YOUR SUITE

Nashville: Have you booked ?

MeBO accepted in FIU Legal Clinic for entity formation as 501(c)3 non-profit org in US

Expert overseeing MEBO Research Studies

Test webinar yesterday : 'Microbes and us' by Irene Gabashvili PhD

Reply from Dr. Jennifer L. Greenberg, PSY.D., RE Survey

Response to Olfactory Reference Syndrome Survey MGH OCD and Related Disorders Program Survey

New paper from Dr. Preti: from genes to axillae

Genetic influences on human body odor: from genes to the axillae.

Bad drug reactions in people with systemic body odor

Systemic body odor/halitosis : Do you have bad reactions to drugs/medicines ?

Trimethylaminuria article in 'The exceptional parent'

The UPSIT Test (scratch and sniff odor home test)

Nigel Manning
Principal Clinical Scientist
Dept. Clinical Chemistry
Sheffield Children's Hospital
Sheffield