New York and New Jersey TMAU Meetup : 11 July 2010

DATE: July 11, 2010
TIME: 6:30pm
PLACE: Jacqueline Kennedy Onassis Reservoir 86th St. entrance

Everyone is invited to the TMAU meetup to be held in New York City Central Park in July. 'missfizi' extends her invitation below to everyone in the TMAU and Body Odor Community. If you would like to attend, please don't hesitate to email her to her email below. This invitation was taken from the Body Odor Support Forum with her consent:

HELLO, THE DATE FOR THE MEET UP IS JULY 11 IN NEW YORK CITY CENTRAL PARK BY the Jacqueline Kennedy Onassis Reservoir entrance on 86th street IN MANHATTAN THE TIME IS 6.30PM, IF YOU HAVE ANY FURTHER QUESTIONS, PLEASE LET ME KNOW. I HOPE YOU ARE INTERESTED, THESE MEETUPS ARE REALLY IMPORTANT YOU WOULD HAVE A CHANCE TO BE WITH PEOPLE WHO UNDERSTAND WHAT YOU ARE GOING THROUGH, WE COULD SHARE HELPFUL IDEAS AND TIPS, YOU COULD SEND ME AN MAIL ANYTIME IF YOU JUST WANT TO TALK.

missefizi@yahoo.com

pubmed study : Flavin-containing monooxygenase-3: induction by 3-methylcholanthrene

A few years back, a group of toxicology researchers from the university of Toronto discovered accidentally that FMO3 could be induced in male mice by certain dioxides. It is currently taught that FMO3 is not inducible.

http://dmd.aspetjournals.org/content/36/12/2499.long

They have since investigated this finding further, with help from two world-renowned FMO3 experts (Krueger and Williams), and again repeated the findings. The latest paper found that 2 types of dioxins greatly increased FMO3 RNA induction, but this resulted in only modest increases of production of the actual FMO3 protein. Nevertheless it disproves that FMO3 cannot be induced, and perhaps could lead to finding safe ways of inducing FMO3 in humans. At the moment their research seems to be specific to male mice in particular, and not female mice, and could not be replicated in rats. It may be species specific. Also, induction is 'overclocking' an enzyme, so may not be a good long-term idea. It has not been tested in humans, and the research also only applies to fully potentially functioning FMO3 enzyme.

Flavin-containing monooxygenase-3: induction by 3-methylcholanthrene and complex regulation by xenobiotic chemicals in hepatoma cells and mouse liver.

Celius T, Pansoy A, Matthews J, Okey AB, Henderson MC, Krueger SK, Williams DE.

Department of Pharmacology and Toxicology, University of Toronto, Toronto, Canada M5S 1A8.

Abstract
Flavin-containing monooxygenases often are thought not to be inducible but we recently demonstrated aryl hydrocarbon receptor (AHR)-dependent induction of FMO mRNAs in mouse liver by 2,3,7,8-tetrachlorodibenzo-p-dioxin (TCDD) (Celius et al., Drug Metab Dispos 36:2499, 2008). We now evaluated FMO induction by other AHR ligands and xenobiotic chemicals in vivo and in mouse Hepa1c1c7 hepatoma cells (Hepa-1). In mouse liver, 3-methylcholanthrene (3MC) induced FMO3 mRNA 8-fold. In Hepa-1 cells, 3MC and benzo[a]pyrene (BaP) induced FMO3 mRNA >30-fold. Induction by 3MC and BaP was AHR-dependent but, surprisingly, the potent AHR agonist, TCDD, did not induce FMO3 mRNA in Hepa-1 cells nor did chromatin immunoprecipitation assays detect recruitment of AHR or ARNT to Fmo3 regulatory elements after exposure to 3MC in liver or in Hepa-1 cells. However, in Hepa-1, 3MC and BaP (but not TCDD) caused recruitment of p53 protein to a p53 response element in the 5'-flanking region of the Fmo3 gene. We tested the possibility that FMO3 induction in Hepa-1 cells might be mediated by Nrf2/antioxidant response pathways but agents known to activate Nrf2 or to induce oxidative stress did not affect FMO3 mRNA levels. The protein synthesis inhibitor, cycloheximide (which causes "superinduction" of CYP1A1 mRNA in TCDD-treated cells) by itself caused dramatic upregulation (>300-fold) of FMO3 mRNA in Hepa-1 suggesting that cycloheximide prevents synthesis of a labile protein that suppresses FMO3 expression. Although FMO3 mRNA is highly induced by 3MC or TCDD in mouse liver and in Hepa-1 cells, FMO protein levels and FMO catalytic function showed only modest elevation.

http://www.ncbi.nlm.nih.gov/pubmed/20570689

Email from the makers of Ataluren, in regard to genetic TMAU

In the TMAU research proposal of Dr Christodoulou written a couple of years ago, he suggested PTC124 (now called Ataluren) could be tried on mice to see if it helps with TMAU caused by nonsense mutations. Ataluren is expected to overule the false 'stop' that nonsense mutations produce, while the protein is forming. The protein could then form correctly. It is already in the later stages of testing with genetic disorders such as cystic fibrosis. Normally, nonsense mutations make up a small % of genetic disorders, around 10-15%.

An email was sent to the company involved, PTC Therapeutics, asking if they thought it may someday be a treatement for TMAU caused by nonsense mutations. This was the reply:

Thank you for your email and your interest in ataluren (formerly known as PTC124) and for letting us know about your organization. We are currently conducting a Phase 3 study of ataluren in nonsense mutation cystic fibrosis and a phase 2a study in hemophilia.

Ataluren may have the potential to treat many genetic disorders in which a nonsense mutation is the basis for the disease. If the studies mentioned above yield positive results we hope to conduct clinical studies in additional genetic disorders. We do not have plans to do a trial in trimethylaminuria at this time.

If you would like to be added to our mailing list to receive updates about ataluren, please follow this link to the contact section of our website: http://www.ptcbio.com/5.0_contact_us.aspx . Be sure to check the box "receive PTC updates."

So far, the only side-effects reported seem to be nausea in some cases. More can be read about Ataluren research in pubmed.

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Related links:

Only known public table of FMO3 variants

MEBO Research: Past, Present, and Future

MeBO-BIOLAB GUT DYSBIOSIS STUDY

Were we've been, where we are now, and where we're heading

PAST

In addition to a total lack of funds needed to carry out any type of study/research, and after unsuccessfully attempting to get scientists interested in researching causes and treatment of the various body odor conditions, we at MeBO Research took the initiative to take matters into our own hands. In the same spirit initiated by Arun Nagrath in his Survey in 2008 in which he attempts to gather as much data as possible regarding our condition to potentially be used by scientists in future research, MeBO decided to begin a community self-study initiative. In the initial phase, this effort began with setting up a small study through Biolab Medical Unit (UK) to test of a few biomarkers of various types of gut dysbiosis.

For almost a year prior to this study, MeBO approached various scientists who wanted to help with research if we could only provide funding. One of the doctors was initially willing to write a grant proposal for us, but as we explored research options, it was determined that aside from TMAU, it became evident that basic data categorization of specific volatile odorous compounds have for specific body odor types has never been compiled in a scientific manner, and that categorization of the various body odor types is also nonexistent. In the absence of this data, there is no clear starting point or hypothesis with which to begin serious research.

PRESENT

This very valid reality was a clear indication that research would never take place and thus, we would never get answers to the causes of body odor conditions not only in non-TMAU sufferers, but also conditions TMAU sufferers may have in addition to their genetic disorder. Consequently, it became very evident to the MeBO staff that we would need to initiate sufferer-driven and sufferer-funded studies to look for patterns so as to begin to gather, compile, and classify data with which we can then use to pursue grants to fund large scale research projects. Thus came the birth of our MeBO-Biolab Gut Dysbiosis Study in mid August 2009.

This exploratory study to evaluate potential screening tools for yet uncharacterized digestive and metabolic disorders responsible for body odor or halitosis is currently recruiting participants.

Thanks to the invaluable guidance of the expert overseeing this project,Dr. Irene Gabashvili, and thanks our international test subjects, 11 subjects who have already submitted their samples and 4 additional subjects that are initiating this testing process, all of whom have paid for their own tests, and thanks to the special rates provided by Biolab, we are beginning to gather data of tests results performed by reputable labs in London. As the results continue coming in, Irene is writing a hypothesis for publishing. We are fully aware of the limitations of this study, such as not having a control group to compare results with due to lack of funds, and as we go along and begin to see patterns in the test results, the initial test profile will be modified by possibly removing some tests from the list and adding more on-target ones. The survey questions for the study may also be modified for better control and interpretation of test results.

FUTURE

Where is this movement heading? This exploratory study to evaluate potential screening tools for yet uncharacterized digestive and metabolic disorders responsible for body odor or halitosis is currently recruiting participants. With the consequent hypothesis proposed by Dr. Gabashvili and the data used to support it, we hope to be in a better position to obtain a grant from private foundations and government agencies to further expand this study to a larger scale research project with a control group. With this and similar kind of data compilation, with MEBO Research being registered as an international non-profit organization in the US and UK, we stand as an international united community of sufferers and experts, and we face a much better chance of obtaining research grants than if we had not united and had taken no action at all.

MeBO-Biolab gut dysbiosis study : Tester 11 results

	Tester 11
	Male, early 30's
Odor problem:	Body odor and halitosis problem. Smells include body odor, fish, sometimes garbage. Had problem for around 15 years. Negative TMAU urine test. Cannot make a connection between diet and smelling, but does with sexual activity
Gut problems	Gas
Other problems	No obvious problem
Trimethylaminuria	Negative urine test
Results :	Tester 11
Gut Fermentation	Ethanol normal. Raised for 2,3 butylene glycol Tester comments it shows probable BACTERIAL dysbiosis
Gut permeability	Raised between 242 and 550 (leaky gut)
Indicans	Positive
D-lactate	503 (normal is below 60)
Vitamin B2	1.11 (normal is below 1.20)

Tester 11 results are back and this is an interesting case both in what he feels provokes the symptoms, and also the pattern of the results themselves. The tester, a male in his early 30's who had had the problem for around 15 years, cannot make a connection between diet and odor occurrences, but makes a certain connection with sexual activity. There are too many speculative reasons why this would be, including possibly something to do with hormones and other chemicals released in the bloodstream.

As for the results, the tester was fine for ethanol (implying yeast gut infection) which has been quite a common trend in our study. Instead his gut fermentation test came back as 'probably bacterial dysbiosis'. This seems to be mainly due to the 2,3 butylene glycol result. This is the first 'bacterial dysbiosis' gut fermentation result we have had, although others have had alcohols higher than normal but the lab did not seem to think them significant enough.

The indicans test is positive, which is generally thought to imply an overgrowth of putrefactive bacteria, and the d-lactate was extremely high. D-lactate is regarded as being produced by lactic-acid producing bacteria from carbohydrate fermentation. This is only the 2nd person to have a high d-lactate result. We were planning on discontinuing this test, but will keep it as an option now.

Gut permeability was also increased (meaning 'leaky gut'); the 7th of our testers that has raised permeability at some stage in the graph.

B2 was normal. Only 4 other people have tested for B2, with 3 being deficient. 2 of them also had raised ethanol.

Overall, this testers results do seem to indicate a bacteria overgrowth issue in the gut of some kind, but not a yeast issue.

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Related links:
Biolab PDF on d-lactate

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About the MeBO-Biolab gut dysbiosis study

The MeBO-Biolab gut dysbiosis study is a sufferer-led project under the guidance and supervision of Dr. Irene Gabashvili, started by MeBO Research with the help of Biolab Medical Unit in London to use a number of tests from Biolab that specifically test for biomarkers of gut dysbiosis, including yeast overgrowth, certain bacteria overgrowth, and 'leaky gut'. Each volunteer needs to pay for their own tests. The criteria for the tests were total cost, and the tests on offer. Although the study is intended as an example of what health-problem communities could achieve with the internet nowadays; it also hopeful the tests in themselves will be useful, although no direct co-relation can be made with the results and your odor problem. To be included in the study, please fill in the survey and you will be contacted by email.

MeBO-Biolab gut dysbiosis survey form

Summary of all testers results so far :MeBO Biolab gut dysbiosis study in systemic body odor

Raising Social Awareness in Mental Health Field

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.org


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.

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.

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.

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

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.

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.

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.

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.

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

UPDATE, 07 JANUARY 2011: See post, 'Exciting changes in Mental Health Field re Olfactory Reference Syndrome' Our efforts bore great success for our community, and now we need to disperse this new information amongst all mental health therapists as we continue with our Raising Awareness Campaign.

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The correlation of organoleptic and instrumental halitosis measurements

The correlation of organoleptic and instrumental halitosis measurements

Brunner F, Kurmann M, Filippi A.
Department of Prosthodontics, Albert-Ludwigs-University, Freiburg, Germany.

This is a recent paper published on pubmed where the German-based investigators were comparing the ability of 3 halitosis measuring devices against that of someone smelling the patients' breath. They compared the halimeter, which has been mentioned on the blog before; the 'French Kiss', which is probably a cheap device by Tanita intended for the consumer market; and the 'halitox' test, which seems to be obsolete but was a way of checking saliva for sulfides or amines.

Not surprisingly, the outcome is that the halimeter is the most accurate of the 3 devices, given that it is a clinical device. Nowadays many dentists with an interest in resolving halitosis prefer the oralchroma.

The correlation of organoleptic and instrumental halitosis measurements.
Brunner F, Kurmann M, Filippi A.

Department of Prosthodontics, Albert-Ludwigs-University, Freiburg, Germany.

Abstract
Numerous detection systems are available for measuring halitosis. In order to examine their agreement, a study was conducted comparing four selected measuring methods in 100 subjects (52 females, 48 males; mean age: 25 years). Organoleptic halitosis measurement was carried out by an odor judge, and compared with instrumental halitosis measurement by sulfide monitoring using Halimeter, Fresh Kiss, and Halitox (halitosis linked toxin detection assay), with which both VSC (volatile sulphur compounds) and polyamines can be detected. The results show that the values recorded by the Halimeter correlated best with the organoleptic assessment and the least with the results of Fresh Kiss.

Full paper can be read here : 3 halitosis measurement devices compared

Olfactory Reference Syndrome paper published in pubmed

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.

María de la Torre
President and Chief Executive Officer

www.meboresearch.org
maria.delatorre@meboresearch.org

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UPDATE, 07 JANUARY 2011: See post, 'Exciting changes in Mental Health Field re Olfactory Reference Syndrome' Our efforts bore great success for our community, and now we need to disperse this new information amongst all mental health therapists as we continue with our Raising Awareness Campaign.

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A dentist posting on the badbreathhalitosis forum

It looks like a dentist with an interest in halitosis is currently posting regularly on the badbreathhalitosis forum. He came up with an interesting definition of the different types of halitosis

MeBO Research would be most interested in type 4 and type 3, but if an interenational Body Odor & Halitosis Research Center and Clinic ever was created, it would make sense for them to investigate all cases of halitosis, although of course every dentist should be aware of halitosis already.

You can follow his posts by searching his profile name :
Aydın Murat posts on badbreathhalitosis

MeBO-Biolab gut dysbiosis study : Tester 10 results

	Tester 10
Female	late 20's
Odor problem:	The smell varies: Ammonia Fecal Smoke Garbage Certain foods if ingested (i.e. onion). Had problem for 9 months
Gut problems	Gas, slow digestion, excess of gas in the stomach (not in the bowel), bad taste in the mouth (of chemical), change in the colour of the tongue (white/brown)- thrush test negative
Other problems	Generally fit and well Other symptoms that have appeared with the odour are: Increase of mucus at the back of the throat Increase sweating in palms ? Skin more oily
Trimethylaminuria	Secondary TMAU, with increased TMA/TMAO ratio in urine test
Results :	Tester 10
Gut Fermentation	Normal
Gut permeability	Increased permeability between 330-374
Indicans	Negative
D-lactate	2 (normal is under 60)
Vitamin B2	1.09 (below is 120 normal)

The results of tester 10 in the MeBO-Biolab gut dysbosis study are back (in cases of body odor and halitosis suspected as being systemically caused)and this time the results seem very normal. A slight gut over-permeability between molecule weight 330-374 seem to be the only abnormality. Of special interest in this case is that the tester had already been diagnosed with Secondary TMAU, meaning an excess of trimethylamine thought to be caused by bacteria in the gut. She had been on antibiotic treatment twice since then, 5 months prior to this gut dysbiosis study, specifically for TMAU2, and is scheduled for her third course of antibiotics soon.

In her presentation for our blog, ‘Microbes and Us’, Dr. Irene Gabashvili explains that through time, a dysbiosis can injure the intestinal wall resulting in an increase or decrease in permeability. It would be interesting to see if the antibiotic treatment for the TMA-producing bacteria has improved this tester's gut permeability, and if it would improve further as the treatment continues.

This is our 4th tester of vitamin B2 status, and the first such tester to be normal for B2 function. Some of the alcohols in the gut fermentation test appear slightly raised (but not ethanol, thought to be caused by yeast overgrowth) but no comment is made of this, so it may not be significant. The range of smells mentioned by the volunteer seem typical of most cases in the study. In the biomarkers tested in this study, this set of results seem very normal.

Tester 11 results should be in within the next couple of weeks. Thank you to tester 10 and all the testers for taking part in the study.

Anyone wishing to take part in this systemic body odor or halitosis study can fill out the MeBO-Biolab body odor/halitosis gut dysbiosis survey and the process will begin. Each volunteer has to pay their own testing costs, which are £170 plus any other costs. It would be especially interesting to see how those who were positive for TMAU would get on with these tests. Unfortunately, those overseas from the UK seemingly cannot do the vitamin B2 test, since the sample will likely be spoiled in transit. Testers need to pay for their own tests.

The tests are seen only as a starting point for exploratory testing into possible causes of systemic body odor and halitosis.

A table of the summary of results is kept on the MeBO Research website. no identifiable information is ever disclosed.

MeBO-Biolab gut dysbiosis study in suspected cases of systemic body odor or halitosis : summary table of results

international body odor/halitosis skype group chat

Recently it has become possible to host around 25 people in a skype audio group chat. The skype program and online service is free globally on computers, with audio quality being far better than phone quality. You can talk using a mic or a headset or even bluetooth. You can listen through your speakers or a headset or headphones or bluetooth. There is also the ability to send text chat messages if you do not wish to talk. You can also join by phone although it will likely cost you. Some phone services allow skype for free but not many. By computer it is free.

If anyone would like to organise such an audio chat, we will promote it here.

meboresearch.com website change

MeBO Research is currently in the process of becoming a charity in the USA, and so the meboresearch.com website will be changing to .org rather than .com

We will keep the .com domain registered as well, and it will redirect to the .org site. This will be why the website may be offline over the next few days, as the change takes place. Hopefully the old .com email addresses will also continue to work.

The charity will be aiming to be a patient advocacy group on behalf of those with systemic body odor or halitosis in particular (research will be aimed at this in particular), but also to promote research and raise awareness into all forms of body odor or halitosis in general. For instance, it makes sense for wealthy societies to have a body odor research center and clinic to best research these problems, and hopefully add halitosis to the criteria also, which would then presumably encompass all forms of body odor and halitosis, which would benefit sufferers from around the world.

Thanks to everyone who has donated and/or supported MeBO Research and made this possible.

New official web address :
http://www.meboresearch.org
shortened url : http://meboresearch.org

Facebook and body odor

Systemic body odor may be the last health problem to fully utilize the internet, due to the taboo of the subject, but slowly there are social network sites appearing to do with systemic body odors or halitosis. MeBO's facebook fan page aside, a quick search of TMAU on Facebook shows that 2 people have started a TMAU page. We do not know anything about the pages.

http://www.facebook.com/people/Tmau-Trimethylaminuria/100000899929844

http://www.facebook.com/people/Trimethylaminuria-Suffer/100000555220700

There is a more established page on this page, although again we cannot comment about it.

http://www.facebook.com/pages/TRIMETHYLAMINURIA-or-tmau-syndrome/372982954846

Whilst we wait for research into systemic body odor and halitosis, it is important to know you are not alone and that our problem is unacceptable and must be corrected. There are many others like us and the pattern from meetups is that usually no-one can smell each other. If anyone knows of any other similar Facebook pages, feel free to let us know.

Facebook page raising money for the TMAU NORD FUND set up by Kristen

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

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

María de la Torre
President and Chief Executive Officer

www.meboresearch.org
maria.delatorre@meboresearch.org

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UPDATE, 07 JANUARY 2011: See post, 'Exciting changes in Mental Health Field re Olfactory Reference Syndrome' Our efforts bore great success for our community, and now we need to disperse this new information amongst all mental health therapists as we continue with our Raising Awareness Campaign.

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