Suggestion for when trying to convince a Dr of TMAU

Tip : Visiting a Dr about TMAU : provoke the symptom by taking choline bitartate (or other cheap absorbable form of choline) for a few days beforehand.

One of the main problems with someone who feels they have TMAU but cannot convince a Dr about the problem is that they are likely to be 'transient/intermittent/periodic' cases, and possibly cannot usually smell themselves and so don't know how to 'smell on demand'.

A suggestion is (if you think it may involve TMAU) would be to buy choline from a health shop and take it for a day or 2 before the visit to the Dr. You may then at least be smelling at the visit. It would probably be best to choose a form of choline other than phosphatidylcholine, which is not is easy for bacteria to break down than other types of choline. The most common form of choline is choline bitartate, which would do fine.

It must be remembered that this may only provoke an odor in a strict TMAU case that has bacteria in their gut that breaks down the choline to TMA. Without the bacteria the choline will not be changed. Probably the real way to see if you have an FMO3 weakness would be to take TMA capsules, however for obvious reasons (horrible taste and no usefullness) these are not readily available.    

It must also be pointed out that this should in theory only be expected to provoke a 'fishy odor', whereas people with 'FMO3 body odor' may have their odors caused by other FMO3 substrates which although can be processed by other enzymes may have built up to excessive levels.

Homeworking ideas for those with body odor/halitosis concerns

For obvious reasons, people with body odor and halitosis concerns are likely to be looking for jobs/careers that do not expose them to humiliation. One option may be homeworking, which may involve minimum/no contact with others, but allow the person to make a living (or better). MeBO Research hopes to compile a comprehensive list of potential careers for those who wish to follow this path (at least in the meantime), beginning with this table, which we will update over time. We will keep the info brief and link to more detailed posts about each career opportunity as time goes by.

People can send us ideas at anytime, and if anyone who is homeworking wishes to write a post for us, feel free to send it to us in an email.

Table of possible ‘homeworking’ careers

Career/Education	Overview	Potential
Bookeeping
Web Designer
Web Developer
E-Commerce
Phone operator
Home distance learning
Web hosting
Virtual/Phone/Email  Counselling
Internet commission services	Example - Fiverr

New 'fish odor syndrome' paper on pubmed

A new 'fish odor syndrome' paper has been published on PubMed. Unfortunately there is no abstract.

Interestingly, it was a case study conducted at The Healthy Heart Program Prevention Clinic inSt. Paul's Hospital, Vancouver, BC, given that there was a paper recently by the Cleveland Clinic suggesting an association between trimethylamine-oxide levels and prediction of heart disease.

We are informed it was about a 68 year old lady who developed a 'fish odor' while taking rosuvastatin for high cholesterol. She had said she had such an odor problem before menstruation. The odor stopped when the drug was ceased taken. They performed the TMAU urine and DNA test. Of special interest was that they diagnosed her as having a FMO3 deficiency even though she converted 92.4% of TMA to TMAO. They consider normal as converting 97.3% TMA to TMAO. These are very high 'thresholds' but it does seem likely that the threshold's are higher than typically used by other labs (eg 83%). Each lab sets their own threshold.

They also DNA tested her. She was a 'carrier' for the common 158 - 308 variants, which is known to cause mild FMO3 deficiency in some. They also say she was heterozygous (i.e., carrier) for one known 'severe' mutant (153). They also found a 'novel' substitution at amino acid 18 which they say could be pathogenic (it is unknown).

They hypothesise that since the drug contains a tertiary amine similar to TMA it may cause a 'competition' for FMO3 processing of the 2 amines. Another theory they suggest is that perhaps the drug interferes with choline absorption leading to more choline reaching the lower gut and being metabolized by bacteria.

Those involved with the case all seem to be experts in heart disease. They were not aware of the Cleveland Clinic paper recently and were informed of it.

---

Petition translations to other languages
Translators needed

Other Raising Awareness Campaign Posts

On Capitol Hill for MEBO Research

On Thursday, June 23, 2011, Glenna Gonzalez, Director of Public Relations for MEBO Research, Inc., participated in the sixth annual Genetics Day on the Hill, sponsored by Genetic Alliance, the world’s leading nonprofit health advocacy group. In addition to coaching clients both internationally and nationally and speaking, Glenna advocates for MEBO in various settings, such as the event on Capitol Hill, which included a cross-section of the genetics community, including health professionals, researchers, and families.

Glenna had the opportunity to discuss with U.S. Congressional Staffers the issues that affect TMAU and Bromhidrosis sufferers.

Glenna, along with others, presented a collective voice to Congressional Staffers in an effort to support policy issue changes that impact genetics and health issues. In addition to discussing these issues, Glenna had the opportunity to discuss with U.S. Congressional Staffers the issues that affect TMAU and Bromhidrosis sufferers. She discussed the need for more research, the difficulties with maintaining gainful employment, and the emotional toll that these conditions have on the sufferers. Glenna discussed the work that MEBO Research performs as an advocacy group on behalf of those who suffer with metabolic body odor.

She discussed the need for more research, the difficulties with maintaining gainful employment, and the emotional toll that these conditions have on the sufferers.

The Congressional Staffers that Glenna met with were those of two Senators (VA), Jim Webb - (D) and Mark R. Warner - (D), and three House of Representatives, Republican Majority Leader Eric Cantor of VA, Gerald E. Connoly of VA - (D), and Representative James Moran - (D). She received a warm reception from each group of Congressional Staffers. In addition to discussing MEBO Research, she also joined the other members of her team in discussing issues selected by the Genetic Alliance. Topics chosen by the Genetic Alliance to be discussed with the Congressional Staffers included the following issues:

1. The Title V Block Grant which is the Maternal and Child Health Program
2. The National Center for Accelerating Translational Sciences, a new Center at NIH
3. The protection of health and well-being through the CDC (Center for Disease Control) programs for birth defects, disabilities and public health.

We are most grateful to Glenna for representing MEBO Research on Capitol Hill and establishing relations with, and illustrating our plight to United States Congressional Staffers as well as other members of the Genetic Alliance. We are encouraged that she has paved the way for MEBO to now have the opportunity to work with the offices of the two Senators of the State of Virginia, Mark Warner and Jim Webb, and four House of Representatives, as we continue to pursue and initiate research, as well as in our efforts to raise awareness of the socioeconomic consequences of living with body odor and bromhidrosis. We are hopeful that this process paves the way for MEBO to more effectively carry out its Public Charity Mission to change the lives of sufferers as well as to change society's perception of what it means to live in a body that has a difficult to control malodor condition.

Genetic Alliance is the world’s leading nonprofit health advocacy organization. The organization promotes an environment of openness centered on the health of individuals, families, and communities. It was a true pleasure for Glenna to participate in this event as a representative for MEBO Research. Glenna looks forward to attending next year. Genetic Alliance has an extensive Resource Repository on their website where we can continue to educate ourselves about genetic issues and genetic testing.

PLEASE SIGN THE PETITION TO,

• raise awareness of systemic body odor conditions in the medical community
• governments to increase direct federal funding
• make scientific research of various types of body odor diseases a high-priority; including but not limited to, Trimethylamimuria (TMAU)
• efforts so that effective treatments and cures can be found.

PLEASE ASK YOUR FAMILY, FRIENDS, AND SUPPORTERS TO SIGN.
Anyone can select to either display or not display
his or her signature publicly on the petition.
PLEASE INDICATE YOUR COUNTRY OF RESIDENCE TO REPRESENT
A UNITED INTERNATIONAL COMMUNITY.

Thank you Glenna and all the signatories for your participation in finding a solution,

María


María de la Torre
Founder and Executive Director

A Public Charity

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

Lady on UK mid-morning TV show talking about her TMAU (Trimethylaminuria)

Thank you Karen for bravely raising awareness so articulately on a high-profile TV show. Our community is the benefactor. In the 8 minute interview, Karen manages to explain that 'fish odor syndrome' does not cover the range of smells people can have. She also mentions the MEBO Research petition, which is part of the campaign by our international patient advocacy group to raise awareness, reach out to sufferers in the community to provide support, and to initiate research.

For the last 10 years, 44-year-old Karen James has suffered from Trimethylaminuria (TMAU) otherwise known as fish-odour syndrome.

Her breath constantly smells of rotten eggs and the problem also affects her sweat under times of stress. Unfortunately there is no cure.

Karen’s symptoms started showing following some travel injections and a recurrent throat infection but she was told by doctors to just live with it. It was only through her own research that she find out about TMAU.

Karen, who joins us today alongside Dr Dawn, describes her condition as an unrecognised disability and finds it difficult to lead a normal life.

Trimethylaminuria UK Support Website
www.tmau.org.uk
Bringing together people who have Trimethylaminuria (TMAU) , their families, friends and healthcare professionals in a positive, caring and supportive environment.
itv, this morning

TMAU activist on popular UK TV mid-morning show this Thursday

A Trimethylaminuria (TMAU) activist is appearing on the popular mid-morning UK TV Show 'This Morning' this Thursday. It will be in the section with the programme Dr : Dr Dawn Harper.

TMAU talk On the 'This Morning' site

Poll : If you have tested for TMAU, what was your TMA-oxide %?

If you have tested for TMAU, what was your TMA-oxide %? (TMAO / (TMA + TMAO) x 100)

MeBO Research looking to offer TMAU urine testing directly in Europe

MeBO Research is always looking to make trimethylaminuria (TMAU) testing more easily accessible and affordable to the body odor and halitosis community, as well as in the future offering other 'systemic body odor' tests. Currently we are working with a UK clinical testing lab that has access to a Nuclear Magnetic Resonance (NMR) Spectrometer that will hopefully lead to direct TMAU testing through this method.

NMR Spectroscopy testing : NMR is testing a medium for the compounds in it via Nuclear Magnetic Resonance. An example graph is shown here. The TMA and TMAO peaks have been labelled. By comparing the TMAO peak to the TMA peak, the ratio between the 2 can then be calculated and the TMAO % worked out.. in this case the TMAO : TMA ratio is 1 : 0.422 (which is not very good, at around 70% TMAO)

MeBO Research also wish the quantities of TMA and TMAO to be given too. A few labs who do not regard anything other than the ratio to diagnose TMAU would not need to quantify the quantities. The reason MeBO want the quantities known is because, for example, 5% of 200 is a lot more than 5% of 2. This usually is important for diagnosing secondary TMAU due to bacterial overgrowth.

It can be seen that the NMR result also contains many other peaks, from which the responsible compounds should be able to be worked out. The very large peak is creatinine. For now, we will start with TMAU. In the future we should be able to look for other abnormal results for 'malodorous' compounds in results. One main reason for not doing this for now is that we need to first know what normal results look like. Also it will probably take the labs some convincing that it is worth testing for other compounds. Someday we hope to make available a 'broad spectrum systemic body odor test' which will probably be based on testing a wide range of malodourous volatile organic compounds in human secretions, as well as other aspects such as DNA testing and gut dysbiosis testing.

We will let you know when this TMAU test becomes available directly in Europe. We are hoping it will be below £150 in price.

Reflections of my dreams and goals these past 3 years

As MEBO Research continues to pursue large funding/grants for research, I was asked to write a story for a grant proposal about how and why I decided to start the charity. I then remembered that I had written three years ago, when we first began this blog in April 2008, an Intro letter in which I address these questions.

Looking back over these three years, I have been steadfastly focused on the concepts I address in this letter; and feel content in seeing just how much we have indeed accomplished in such a short period of time. I felt so alone and distant from experts in 2008, so many posts in the forums at that time were somewhat focused on alot of self-defeated perspective because truly there was no recourse to speak of. Shortly after I wrote this piece, all the labs in the US STOPPED TESTING FOR TMAU for a whole year due to lack of demand as a result of lack of a solid community organization at a national and international level. This was truly a very depressing time.

After so much effort from so many people who have shared my dreams and aspirations these past three years, I now feel so hopeful and feel that real work is just around the corner as researchers from many countries in the world have significantly united with sufferers, that I can almost touch it, and it feels so good! Yet at the same time, I am fully cognizant that there is so much work still ahead of us.

Even though I frequently feel drained and overwhelmed, I draw strength from the volunteers that approach me from time to time, who have become very inspired and dedicated to share this venture with me. Even so, more volunteers are needed to help the various testing, research, Public Relations and Community Outreach projects in the works that are soon to come to fruition, and more information will be forthcoming about these in the near future.

Meanwhile, I invite everyone to read my Intro letter copied below in hopes that you feel as inspired as I do.

With all my love to everyone in this community,

María

---

---

Intro letter

Thursday, April 10, 2008

As a 54 year-old married mom of two sons living in Miami, Florida, I have personally struggled with severe body odor in my family throughout my life, and especially these past eight years, has been impossible to control. The most exasperating aspect of the struggle to control and cure this condition was not finding answers from numerous well-intentioned medical doctors, including gastroenterologist, dermatologist, allergy and asthma specialist, and othorhinolaryngologist. As a result, I had no other recourse but to turn to the web to find guidance and answers.

After having read numerous research articles online from around the world, heart-wrenching posts by body odor sufferers in many Body Odor/TMAU forums, and after watching various news and talk shows regarding this matter, it seems to me that most cases don’t fit the traditional idea of body odor as being an external skin problem. By that I mean that it is bloodborne and systemic, to be released through the pores and any way it can, through all the body cleansing organs - lungs, kidneys, skin, and glands. I am also amazed at the numbers posting on the boards. It seems as if it is far from a rare problem, although symptom intensity seems to vary in degrees from one person to another and even in one person through time.

I began to see a pattern emerging in numerous parts of the world suggesting that body odor is a medical condition that usually arises from more than one cause in each individual sufferer, such as metabolic and/or gut bacterial imbalance, and possibly other causes yet to be discovered, many of which are genetic in nature. These multiple causes in one individual sufferer may vary from another sufferer, thus making it extremely difficult if not impossible for sufferers to find a lasting solution to their particular body odor condition without additional research and professional guidance.

The function of this blog is multifaceted as it serves as a channel between experts and sufferers to promote awareness and funding for research, and to achieve a good solution to enable sufferers to help themselves. First and foremost, I would like all sufferers who visit and participate in this blog to be assured that I commit to doing everything in my power to protect your privacy and confidentiality throughout this process. And experts, this blog will serve as a tool for you to tap into an international pool of sufferers who are very eager to assist you in finding a good understanding of the various causes of body odor and a solution to our problem; so please feel free to get in touch with me at any time, and I will do everything possible to put you in contact with whomever you need to reach regarding this matter. The third important objective of this effort is to establish a virtual worldwide body odor and halitosis research center to remain in close contact with sufferers through this site.

SUFFERERS UNITED

Through this blog sufferers of various body odor forums, as well as other sufferers, can come together in larger numbers to provide the scientific community with data for research, surveys and questionnaires. In turn, sufferers can find in this blog, online articles of scientific and medical information related to body odor and its management. In this manner, I hope that sufferers and experts unite and arrive at a better understanding of the various causes of body odor, develop an effective course of treatment for each condition, and most importantly, find a cure.

It is my sincere wish that the outcome of this effort will result in a future commonplace practice of a sufferer going to his or her family doctor anywhere in the world presenting with body odor as his or her primary complaint, that the physician would immediately know what metabolic and/or microbial diagnostic exams are indicated in order to arrive at a speedy diagnosis and treatment plan to control and eliminate body odor. It saddens me that people can be suffering so much misery, with the medical world seemingly unaware except for perhaps a handful of experts who know about trimethylaminuria. It is also my aim that all private and group health insurance plans as well as national medical plans routinely cover the diagnosis and treatment expense of these conditions as it would any other medical condition so that bloodborne body odor sufferers can afford to seek proper medical treatment.

I therefore invite all members of all body odor forums and websites, and all who suffer from body odor, as well as the scientific, medical, and healthcare community throughout the world to unite and to participate in this endeavor to find real answers. Sufferers may do so by providing as much accurate data as possible to whatever questionnaire or survey researchers post in this blog to assist with their research, while feeling confident that their privacy will be protected. Researcher should feel welcomed with open arms to carry out their research projects in this endeavor tapping into a strong pool of available subjects in a joint effort to find a cure for body odor. In this data and information exchange effort, we can unite at an international level to achieve all these goals so that we can provide a happy and productive life for ourselves, our children, and future generations.


María de la Torre
Founder and Executive Director

A Public Charity

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

---

Google blogger polls seem to be working correctly again

What do you think are your health complaints of the list below ? (tick one or more)

Update: Unfortunately although the 'backwards' problem seems to be fixed, it now seems that some votes do not register or register incorrectly, with perhaps only the Firefox browser working correctly. Nevertheless, feel free to keep voting !

---

Regular readers may have noticed our polls tend to recede in number rather than increase. This seems to have been caused by a bug in google's blogger coding but after a few years the problem seems to have been recently fixed. The polls were intended as eye-catching 'vox-pop' surveys to quickly catch the attention of any passing experts or decision-makers. It was hoped our polls including fecal body odor would publicise what among society would be a never before heard problem. Unfortunately with the poll going backwards we deleted the old poll and started anew, only for the second poll to go backwards after a while. It is likely that over 1500 people took part in our main poll.

Even amongst our own community there seems a wide range of beliefs as to the source of their own problem, mainly due to the fact that normally the sufferer cannot smell themselves and so are probably not the best to give testimony of their own problem. Judging by the posts in the forums, an attempt has been made to list the various 'disorders' our community regards as their problem. As well as the range of odor problems, our community even includes a disorder that sufferers feel may not emit an offensive odor but that people may be allergic to. We make no judgment of the 'list' of disorders. It is merely an attempt to see how many feel they have each disorder.

With the polls seemingly working correctly, we may be taking a renewed interest in polling as a means to help ourselves understand our disorders and to act as eye-catching evidence to anyone who may be able to help us.

Study on effects of mouthwash on halitosis

This is a new paper including an expert with a history in halitosis research, Professor John Greenman of the University of South West England. He is a scientific advisor to ISBOR, probably advising on detecting volatile organic compounds in breath.

In this paper, they set out to test the capability of a new mouthwash (SB12) against 4 other commercially available mouthwashes. It was also an opportunity to compare the 2 best-known 'clinical' testing machines for VOCs in halistosis, the Oral Chroma and the Halimeter.

Pubmed paper : Comparative effects of various commercially available mouthrinse formulations on oral malodor

Ladies diagnosed with TMAU : Are you prone to bacterial vaginosis ?

co-discoverer of the FMO3 gene joins tmau.org forum

We are pleased to see that Colin Dolphin has joined the tmau.org.uk forum. Dr Dolphin is a senior lecturer at Kings College London, and was part of the team that first demonstrated that genetic mutations of the FMO3 gene was responsible for genetic trimethylaminuria (TMAU1)

Dr Colin Dolphin's introductory post on the tmau.org.uk forum

As can be seen in Dr Dolphin's papers in pubmed, he was heavily involved in the early days of defining the FMO3 gene (as well as other FMO's in the FMO gene family).

Dr Colin Dolphin author search in pubmed

Welcome Dr Dolphin

Note : Mr Dolphin is not a medical doctor.

Ataluren trials doing well in phase 2 trials

We have written before about the drug Ataluren, which is undergoing trials to prove it's efficacy and safety. It is a drug by PTC Therapeutics which seems able to overrule the false stop that happens in nonsense mutations (which result in immature proteins).

Nonsense mutations usually cause a severe form of whatever protein they cause to form incompletely, but usually make up only around 5-10% of the genetic cases of any disorder. This is probably true for FMO3 protein formation too. For example, of the 532 amino acid sequence that makes up an FMO3 protein, there is known to be a nonsense mutation possible at amino acid 148, which causes the protein to stop formation there.  

The trials have reached phase 2 of the 3 phases usually undergone by a new drug. They have just released an update of how the phase 2 trial went in the case of the genetic disorder Cystic Fibrosis. It seems to have gone well.

"...These encouraging data demonstrating statistically significant pharmacodynamic activity support the potential of ataluren for a significant subset of severely affected CF patients," stated Professor Michael Wilschanski, Director, Pediatric Gastroenterology, Hadassah University Hospital. "The results are important because they suggest that ataluren promotes the production of full-length, functional cystic fibrosis transmembrane conductance regulator (CFTR) protein and addresses the underlying cause of the disorder. Currently available treatments for cystic fibrosis only address symptoms, and new therapies such as ataluren are urgently needed..."

Ataluren press release July 1

---

http://en.wikipedia.org/wiki/Ataluren
http://en.wikipedia.org/wiki/Nonsense_codon