fastercures.org conference starts tomorrow in New York

The tragedy about systemic body odors and halitosis is that even the medical and political system are mostly unaware the problem exists, and so it is unlikely any research will be forthcoming under the instructions of those fields of society. We will need to find ways of influencing the medical system and politics, such as lobbying (as well as organizing ourselves for any 'self-help' attempts, with MeBO Research being an example).

Fortunately there are some organizations with ties to the medical and political system that have both the financial backing and prestige to make change capable. One such organization would seem to be fastercures.org, which is holding a 'Partnership for cures' conference in New York on 1-3 December. This will bring about the meeting of researchers and medical foundations, pharmaceutical and biotechnology companies,private investor and venture capitalist groups, and philanthropists; to arrange research and funding into deadly or debilatating diseases.

Fastercures.org is part of the Milken Institute, an economic thinktank which had the foresight to instigate such a needed service in the internet age.

So there may not be any discussion about trimethylaminuria, systemic body odors, or systemic halitosis at the conference this year, but at least we are now aware of the organization and are learning about the infrastructure of medical research.

Bad drug reactions in people with systemic body odor

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 because greater understanding of FMO3 is needed). 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 thousands of substrates). Often, a substrate can take 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, and those with reduced FMO3 function are expected to live a normal lifespan, the enzyme seems to be involved in thousands of substrate oxidation reactions. So it is likely that most FMO3 research is more likely going to be a consequence to bad reactions to drugs (or uselessness of drugs that 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

3rd tester's results in the MeBO-Biolab Gut Dysbiosis in systemic body odor and halitosis study

Results :	Tester 3
Gut Fermentation	Ethanol raised, implying yeast small intestine overgrowth
Gut permeability	raised for bigger sized molecules, implying 'leaky gut'
Indicans	positive
D-lactate	2 (below 60 is normal)

MeBO Research is conducting a Gut Dysbiosis Study in relation to systemic body odor and halitosis, even though sufferers of any form of body odor and halitosis are also welcome to test, since currently all fees are paid by the person testing.

The 3rd tester's results have just been received and posted above.

About tester 3 : Tester 3 is a male in his early 30s, who feels he has a strong, slightly unusual odour in his armpits and groin area that he thinks is more fecal, although not totally sure. His groin / anal region has become the more prominent issue and these glands seem overactive. He feels anxiety levels affect his sweat glands, as heightened anxiety states increase his odour substantially. He has had this problem for 6 years and has not tested for trimethylaminuria. He has gut issues and feels he has food intolerances. Other health problems include a skin condition, allergies, chemical sensitivities and asthma. He feels fatigue, craves simple carbohydrates, and feels that probiotics help.

Results : The results of these tests showed positive for indicans, raised ethanol levels imply the presence of a mild yeast overgrowth, and an increased gut permeability at the larger range sized molecules (a condition termed as 'leaky gut'). His permeability result is interesting in that it starts borderline low for the smallest sized molecules and increases as it continually rises above the normal mark for the bigger sized molecules.

Remarks : It is interesting that tester 2 and 3 had raised ethanol levels, but tester 2 had raised D-lactate and negative indicans, whereas tester 3's D-lactate and indicans results were the opposite. Tester 1 did not have any obvious dysbiosis pattern from the tests in the study, and was the only one not to feel he had some sort of gut complaint.

About MeBO Research : MeBO Research is a sufferer-founded international campaign to research the causes, treatment, and cure of the various systemic body odor conditions. It is a non-profit, limited by guarantee Company registered in England aiming to become a charity with donations awarded by its members and volunteer fund raisers. Within only months of MeBO's inception, research was underway with the gracious contributions of volunteer testers, discounted testing rates, and pro-bono services by experts. Upon becoming a registered charity, MeBO Research will be in a better position to fund raise for large research grants and endowments in order to further its research efforts.

The MeBO-Biolab gut dysbiosis study is still open for anyone wishing to test. Biolab will now be accepting international applications for testing. Unfortunately, volunteers would need to pay his or own costs (a maximum of £146). It is aimed specifically at people with fecal/bowel smells body odor, but since the tester is paying, anyone with body odor or halitosis is welcome to test.

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The form to test in MeBO-Biolab Gut Dysbiosis Study is here :
MeBO-Biolab gut dysbiosis in body odor or halitosis study form-REVISED

Donate to MeBO Research

What MeBO is doing

MeBO Research aims to become a charity focusing on systemic body odor and systemic sourced halitosis, particularly 'bowel smells' body door, since is the most common. Any donations are welcome to primarily reach MeBO's aim of charity status. As a charity, MeBO can then pursue grants and endowments in order to carry out large-scale international studies.

TMAU DNA test soon available in a hospital in USA

Regular readers may be aware that until recently HBRI was the only possible source for people to do TMAU Genotype test (DNA blood test) in North America, testing for variants/mutants in the FMO3 gene associated with TMAU. Unfortunately, HBRI recently announced testing will be suspended temporarily until the summer of 2010.

Due to lack of program support, HBRI is not currently accepting samples for TMAU testing. We will accept samples in June of 2010, with results anticipated in the fall of 2010.

MeBO Research has tried contacting other sources of clinical genetic testing in the USA to try to persuade them to add TMAU DNA testing to their repertoire. We are pleased to say that a Hospital has kindly decided to add the TMAU DNA test to their list of tests hopefully early in the New Year. We will refrain from posting their details until all is confirmed and established.

A representative of this institution tells us:

The test would be available to anyone with a prescription from a physician - including international physicians. We do accept international specimens. We perform institutional billing - except for registered patients - so there is no insurance issues to overcome. The patient could pay the submitting facility directly. We would then bill the facility.

MeBO-Biolab body odor gut dysbiosis study : An elaboration of tester 2's results

	Tester 2
Female	50's
Odor problem:	Systemic body odor between 10-20 years.
Gut problems	Constipation
Other problems	Thrush, vaginal, Allergies, Headaches, cystitis, and urinary tract infections on eating certain foods
Trimethylaminuria	negative
Results :	Tester 2
Gut Fermentation	Ethanol raised (140 : normal is less than 22). Some other 'bad' bacteria alcohols raised but no comment made by lab. Butyrate (good SCFA) lowish
Gut permeability	slight increase in permeability for mid-sized molecules
Indicans	Negative
D-lactate	156 (normal is below 60)

MeBO Research is currently carrying out a Gut Dysbiosis Study in cases of body odor and halitosis, with the help of Biolab Medical Unit in London.

Recently, tester 2's results were received and showed some interesting patterns, as can be seen in the previous post, '2nd tester's results in the MeBO-Biolab Gut Dysbiosis in metabolic body odor and halitosis study'. This post will be an elaboration of the abnormal results.

The 2nd tester is a lady in her 50s who describes herself as having a sewage/garbage/rotten cabbage/sulfur/damp/dirty odor condition, which she has had for 10-20 years. She believes it is systemic. She has fungal issues, as well as issues with allergies/headaches, cystitis, and constipation. Her TMAU results were negative, including the DNA test.

Analysis of her results :


Plasma D-lactate Elevated…thought to be only sourced from fermentation by lactic acid bacteria in the digestive tract, usually the small intestine… linked to Chronic Fatigue Syndrome…Plasma D-lactate : ELEVATED more than double the maximum normal range.- Tester 2's D-lactate was raised, implying an abnormally high amount of D-lactate in the blood. D-lactate in humans is thought to be only sourced from fermentation by lactic acid bacteria in the digestive tract, usually the small intestine. D-lactate is not the same type of lactic acid that our muscles create when tired, which is known as L-lactate. L-lactate is very easily metabolized, whereas D-lactate is not, and a build up can cause D-lactic acidosis. Lactic acid bacteria normally reside in the lower half of the small intestine of a healthy person. Currently, the only people expected to potentially have problems with D-lactic acidosis are people with a shortened small intestine.

D-lactate is also of interest because recently a Chronic Fatigue Syndrome theory was put forward where the reason for the fatigue was given as excess hydrogen sulfide, which was deemed to have been produced by lactic acid bacteria. However, this theory is new and not proven anywhere else. It should be noted that probiotics with lactic acid bacteria would be likely to worsen things if someone is producing too much D-lactic acid already, so lactobacillis acidophilus and other LAB would be best avoided in this case.

Gut Fermentation Profile results: Raised ethanol fermentation consistent with yeast overgrowth... Gut Fermentation Profile results : RAISED ETHANOL FERMENTATION CONSISTENT WITH YEAST OVERGROWTH. Over six time higher than highest normal range. Some of the tester's other alcohols were also slightly raised, which are associated with bad bacteria. Note: A glucose load was given one hour before sampling. All results assume 24 hours without alcohol ingestion and three to twelve hours fasting.
Tester 2's gut fermentation results were probably typical of many gut dysbiosis results, in that they were high for ethanol and low for some of the good fatty acids, such as Acetate, Propionate, Butyrate, produced by good bacteria. Biolab uses ethanol as the biomarker for candida over-production in the small intestine, since they point out that ethanol is only known to be produced by yeast in humans.

Intestinal Permeability Profile using polyethylene glycol (PEG400) : SLIGHT INCREASED PERMEABILITY TO PEG around mid-range absorption levels (between mwt 374 to 506). Tester 2's gut permeability was normal apart from being borderline over-permeable around the mid-range absorption level.

Urine Indicans : NORMAL
Tester 2's Indicans test was normal.

Summary : In summary, tester 2's results seem to mainly imply a yeast overgrowth in the gut, as well as an overgrowth of lactic acid bacteria. The permeability test was borderline at the midrange, and her short chain fatty acids from good bacteria were on the low side, as well as the alcohols from bad bacteria being slightly higher than wished. This does not say that the results have anything to do with her body odor problem, since many other factors have not been ruled out, and there is not enough data on the condition to arrive at a conclusion. Nevertheless, it is interesting since many people with 'bowel smells' body odor often have gut complaints.

The MeBO-Biolab gut dysbiosis study is still open for anyone wishing to test. Unfortunately, volunteers would need to pay his or own costs (a maximum of £146). It is aimed specifically at people with fecal/bowel smells body odor, but since the tester is paying, anyone with body odor or halitosis is welcome to test.

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The form to test in MeBO-Biolab Gut Dysbiosis Study is here :
MeBO-Biolab gut dysbiosis in body odor or halitosis study form-REVISED

Donate to MeBO Research

What MeBO is doing

About privacy:
see Donate page

About MeBO Research : MeBO Research aims to become a charity focusing on systemic body odor and systemic sourced halitosis, particularly 'bowel smells' body door, since it is the most common. Any donations are welcome to primarily reach MeBO's aim of charity status. As a charity, MeBO can then pursue grants and endowments in order to carry out large-scale international studies.

New pubmed paper on foot odor analysis

A new medical paper on foot odor has been published on pubmed, by a group of Italian researchers from the University of Bologna. There is nothing particularly new in the paper. It was just a confirmation (in their opinion) of foot odor being adequately analysed by the standard current method by biochemists ... using gas chromatography and mass spectrometry. "Acetic, butyric, isobutyric and isovaleric acids were identified as the main contributors to foot malodor in the majority of volunteers. Propionic, valeric and isocaproic acids were also detected in some subjects."

BACKGROUND/PURPOSE: Foot malodor is mostly due to short-chain fatty acids produced by bacterial metabolism of eccrine sweating. We aimed to develop a protocol for an objective (instrumental) efficacy evaluation of foot deodorant formulations. METHODS: Head-space solid-phase microextractions of target fatty acids from the feet of six healthy volunteers were analyzed by GC-MS. A comparative analysis of the treated vs. the untreated foot was performed in each subject after washing the feet with a physiologic solution and incubating at 36 degrees C for 24-72 h in tryptic soy agar growth medium. RESULTS: Acetic, butyric, isobutyric and isovaleric acids were identified as the main contributors to foot malodor in the majority of volunteers. Propionic, valeric and isocaproic acids were also detected in some subjects. Comparative analysis according to the protocol developed showed a statistically significant (P<0.01) reduction of target fatty acids ranging from -26.6% to -77.0%. CONCLUSION: The protocol developed is a convenient, sensitive and non-invasive method to test the efficacy of foot deodorant formulations in human volunteers. Pubmed paper : Analysis of foot odor, November 2009

Trimethylaminuria article in 'The exceptional parent' 2003 by Rick Rader

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

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

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

MeBO’s financial update

Since MeBO Research’s inception four months ago on July 12, 2009, it has made every effort to stretch its very limited financial resources to carry out scientific study involving persons who suffer from body odor conditions. In our initial research effort, the MeBO-Biolab Gut Dysbiosis Study, we have already tested two volunteers, and are currently testing the third. In addition, MeBO is initiating a ‘thorough case study’ of another volunteer, as noted in our previous post in this blog, More about the MeBO-Biolab thorough case study in systemic body odor and/or halitosis.

These studies have been carried out under the supervision and advisement of MeBO’s expert, Dr. Irene Gabashvili , who has graciously dedicated her pro-bono services, and continues to generously offer her time to compile and organize MeBO’s test result data to later present its patterns along with her interpretation. We are also grateful to Biolab Medical Unit in London for allowing us to do the study by using their tests, and all their other cooperation.

How has MeBO paid for all this? Where have the funds come from? This study has been supported by Dr. Gabashvili and Biolab's help, sufferers donations both in the US and the UK, and by volunteer testers footing their respective testing costs. Without all of this generosity, MeBO would not have been able to gather data of test results, which has not only been of personal valuable to those tested, but also to the community as this information can potentially be used for future research.

CASH DONATIONS* July 12 thru November 12, 2009	VOLUNTEERS FOOTING THEIR TESTING EXPENSES paid directly to Biolab	BIOLAB DISCOUNT & MEBO CONTRIBUTIONS (INCLUDED)
£330.00 GBP = $546.98 USD	610.00 GBP = 1,016.75 USD Through the first 3 testers paying for their own tests	Biolab Discount & £125.00 from MeBO Fund
TOTAL Proceeds: £940.00 = $1,563.73 from July 12 through November 12, 2009

As more test results become available with notable patterns, they will be analyzed, interpreted and presented by Dr. Gabashvili in this blog and in MeBO’s website.

It is MeBO’s next aim to extend this Gut Dysbiosis Study to be carried out in the United States by the first part of 2010, and eventually to other countries, making this an international effort.

María de la Torre

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The form to test in MeBO-Biolab Gut Dysbiosis Study is here :
MeBO-Biolab gut dysbiosis in body odor or halitosis study form-REVISED

Donate to MeBO Research

What MeBO is doing

MeBO Research aims to become a charity focusing on systemic body odor and systemic sourced halitosis, particularly 'bowel smells' body door, since it is the most common. Any donations are welcome to primarily reach MeBO's aim of charity status. As a charity, MeBO can then pursue grants and endowments in order to carry out large-scale international studies.

More about the MeBO-Biolab thorough case study in systemic body odor and/or halitosis

MeBO is currently conducting a small Gut Dysbiosis Study thanks to cooperation with Biolab Medical Unit. This study consists testing volunteers for dysbiosis markers available from Biolab's reportoire of tests. Two volunteers have already done the Gut Dysbiosis Study. One volunteer will undergo a more thorough testing process with Biolab. In additon, an organic acid urine test will be added, which is used mostly in metabolism units. Each volunteer is paying for his or her own tests, for which we are truly grateful.

A volunteer has offered to be the subject of a more 'thorough case study'; and the tests selected are listed below. The tests are restricted to what was on offer from Biolab's list, cost limitations, and other options presently possible. This thorough case study should be regarded as an exploratory screening, with most results expected to come back normal, apart perhaps from dysbiosis markers. This study should be seen as a starting point and not as the final measures of investigating systemic body odor and halitosis. Partly it is to inspire and act as an example as to what the community could achieve.

The case study volunteer wanted to pay for all her tests, but MeBO feels it more appropriate to partly fund her cost, since she is doing the community the favor. So MeBO will be paying £125 of the costs, thanks to donations. Biolab also offered to help in this case by giving a 25% discount on their tests, to which we are grateful.

The tests chosen were :
(from Biolabs list of tests)

D-LACTATE IN SERUM £12 - Lactic acid bacteria produces d-lactic acid. Usually this acid is helpful but not if over-produced. In tester 2 this was elevated,
B VITAMINS PROFILE (B1 B2 B6) £46 : B vitamins are often produced by good bacteria and are co-factors in many enzyme reactions, including B2 for FMO3 enzyme,
GUT FERMENTATION TEST £44 : A blood test that checks for candida production of ethanol, as well as some alcohols associated with unfriendly bacteria and short chain fatty acids associated with friendly bacteria,
GUT PERMEABILITY PROFILE £75 : Checks gut absorption ability at different molecule sizes. Including under absorption and 'leaky gut',
INDICANS £13 :- bi-product of certain protein bacteria fermentation,
GUT FUNCTION PROFILE £77 : Hydrogen and methane breath test, which are associated by-products of small intestine bacterial overgrowth
AMINO ACID PROFILE £82 : Checks various amino acids associated with normal metabolism function,
GLUTATHIONE-S-TRANSFERASE £22 : An enzyme that does a variety of vital things, including being one of the phase 2 biotransformation enzymes, that are often involved in detox processes,
HAIR MINERAL PROFILE - £33 : Minerals are often co-factors in enzyme functions.

Total = £404
-25% discount = £303
- MeBO £125 = £178
+ Organic Acid test (from The London Clinic) =£140
: The organic acid test here is similar to that used in the newborn screening program, primarily looking for major well-known metabolic disorders, but also some of interest to MeBo including one which is an indicator of biotin levels, and others that are short chain fatty acids produced by good bacteria

total volunteer pays = £318

About the volunteer : The volunteer is a lady in the 35-45 age group who has had a halitosis problem for 10 years, which she feels is systemic-sourced. She is negative for the TMAU urine and DNA test (UK tested).

She feels her halitosis varies over the last 10 years progressively getting worse, mostly like gas fecal, rotten eggs, decay, smoke or burning, and sewage. She feels she has other health issues, such as Chronic Fatigue Syndrome (CFS), digestive issues, thrush, chemical and environmental sensitivities, headaches, and generally feels 'unwell'. In her own words, she feels that, "Anxiety, stress and menstruation all definitely make the odour worse and uncontrollable. Certain foods also make me smell instantly. Eggs make me smell like rotten eggs, coffee gives me a barnyard type smell. Chickpeas and legumes make me smell like sewage and spicy food gives me a rotten, acid type odour."

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The form to test in MeBO-Biolab Gut Dysbiosis Study is here :
MeBO-Biolab gut dysbiosis in body odor or halitosis study form-REVISED

Donate to MeBO Research
What MeBO is doing

About privacy:
see Donate page

Currently raised:
330.00 GBP = 546.99 USD
11NOV09

About MeBO Research :
MeBO hopes to help in researching systemic body odor and halitosis problems, both by activating small case studies straight away, and by promoting other research by private or public researchers. MeBO will use any donations either to become a charity, or to help pay for such case studies. The philosophy is that the medical system and society are not interested in systemic body odor or halitosis as a medical condition and no research is forthcoming, and also that society and the medical system do not realize it is probably a common problem. Anyone wishing to donate can do so through the PayPal link, or contact Maria by email, meboresearch@gmail.com to donate by other ways.

Christmas body odor and halitosis meet-up 2009 in London invitation

Saturday
12th DEC 09
12:00 noon
All Bar One in Leicester Square
London

A Christmas meet-up 2009 in London invitation posted in the Body Odor Support Forum from Jan (Snoopy39):

Current number interested in attending : 10

Hello,

Just to let everyone know we are having a Christmas get together again this year and have volunteered to help Arun organise it. Have e-mailed or pmed most people about it already but just in case thought I would post the invitation here too. We had the first one last year which went down well (from what I can remember, hic!!!) and thought we would do it again.

We will be meeting on Saturday 12th December from 12 onwards at All Bar One in Leicester Square, London as this is a central venue and easy for everyone to find. Last year we stayed here for a few hours before moving on for a meal and then more drinks and this year will be more of the same. Just to emphasise that this is a social event and a relaxed get together with no formal agenda.

Everyone is welcome. Please pm me/ e-mail me on snoopy3932@yahoo.com or contact Arun if you are coming along. Also feel free to contact me with any questions.

Cheers, Jan

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If you would like to have a Christmas meetup you could post about it on the bodyodorsupport.com forum or you can promote it here

2nd tester's results in the MeBO-Biolab Gut Dysbiosis in systemic body odor and halitosis study

Currently, MeBO Research is carrying out a study with co-operation from Biolab Medical Unit to determine if people with body odor and/or halitosis have any gut dysbiosis condition as detected by the tests and biomarkers chosen. In our 2nd tester's test results, the biomarkers tested were ethanol for yeast small intestine overgrowth, some alcohols associated with anaerobic gut bacteria overgrowth, fatty acids associated with 'friendly' anaerobic gut bacteria, D-lactate which is associated with lactic acid overgrowth in the small intestine, indicans which is associated with protein bacteria fermentation, and a slight elevation of gut permeability.

The 2nd tester is a lady in her 50s who describes herself as having a sewage/garbage/rotten cabbage/sulfur/damp/dirty odor condition, which she has had for 10-20 years. She believes it is systemic. She has thrush issues, as well as issues with allergies/headaches, cystitis, and constipation. Her TMAU results were negative including the DNA test.

Her results are as follows (to be made into a table later) :

1. intestinal permeability : Slightly increased permeability to PEG at the midrange level between mwt 374 to 506
2. indicans : negative
3. d-lactate : 156 umol/L (normal less than 60)
4. gut fermentation Profile: raised ethanol fermentation consistent with yeast overgrowth as follows,

• *ethanol 140 (normal would be less than 22)
• *some anaerobic bacteria alcohol metabolites were slightly elevated
• * quite a few 'friendly' bacteria fatty acids were low

More comments will be made on these results later.

The MeBO-Biolab survey is still open to anyone in the UK and Ireland with body odor and/or halitosis, preferably metabolic body odor and/or halitosis, even if you have been diagnosed positive for TMAU. Unfortunately, since MeBO has only just recently begun operating as a non-profit organization, the volunteers would need to pay their test costs (£146). The MeBO questions in the application/survey form are to collate data and look for patterns. Volunteer testers only need to give their name and email address to MeBO in this survey. The other private details will be handled by Biolab directly when you test.

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The form to test in MeBO-Biolab Gut Dysbiosis Study is here :
MeBO-Biolab gut dysbiosis in body odor or halitosis study form-REVISED

MeBO is aiming to become a charity, which will cost approximately £1,500.00 to accomplish. Once it achieves this status, it will be in a better position to pursue grants for larger-scale research efforts not only in the UK but abroad as well. MeBO is looking to actively promote research into metabolic body odor and halitosis, especially fecal/gas/garbage body odors (as they are called on the forums). In the meantime, it will continue forward with such studies as this Gut Dysbiosis Study to gather data to identify common patterns amongst sufferers.

Donate to MeBO Research

What MeBO is doing

About privacy:
see Donate page

Currently raised:
233.00 GBP = 386.03 USD
06NOV09

Another volunteer has offered to do a larger range of tests soon, which we will post about beforehand. This case study will cost quite a bit more. Biolab has offered a 25% discount for this single case study, and MeBO would like to cover some of this costs, seeing her testing as being for the good of the community. This volunteer wanted to pay for all her test costs, which would be approximately £400 at current estimates (the list of tests isn't confirmed yet), but MeBO would like to pay £125 of this expense. Any contributions towards this £125 target is appreciated. If anyone would like to donate in ways other than through PayPal, please feel free to contact Maria by email, meboresearch@gmail.com.

Cheryl Marshall on the 2pm EST conference call today

Don't forget that Cheryl Marshall, of the NORD TMAU Fund and recently on the TMAU mystery Diagnosis episode, will be giving a talk on the conference call today. The call starts at 2pm EST and she should be on around 3pm EST.

If you have any problems getting in the call it is best to try again. If you have any issues you can post them on the bodyodorsupport.com forum and someone will probably see them. There was around 74 callers for Camille's conference a while back.

If you don't want to participate, when the access asks you to 'announce yourself', just remain quiet.

Callers from overseas are advised to look for 'override-carriers' to phone in, since these are often ,much cheaper, but it depends on who is your official phoneline company.

For USA-based : (712) 432 1620 then type the access code on your phone keypad: 391629#
Non USA : prefix above with 001 but check to see if it is free with your supplier (if you have found an overide carrier, you would put their prefix before everything.)

Cheryl & friend's NORD TMAU Fund Fundraising website

Cheryl's special TMAU conference call this Sunday : phoning in from overseas

This Sunday at 2pm EST there is a special conference call featuring Cheryl Marshall who was the lady on the Mystery Diagnosis TMAU episode, and who also founded the NORD TMAU Fund. Many non-USA residents are likely to be interested to hear the call, but feel it may be too expensive (which it will likely be if you use your national phone company, for example). However in most countries there are 'discount carrier' phone companies that enable you to dial a special number to connect to the USA at a very cheap price. In the UK, such an 'over-ride carrier' would be discountdial . If you have a BT connection, by using their USA number to connect to the call, you would be charged 0.5p per minute rather than 18p, and it gets added to your phone bill. If you do not use BT or use a mobile, you need to check for extra charges by your phone company.

The same will be true for most countries

So for example, someone from the UK with a BT phoneline can phone the conference call by

1. dialling discountdials USA number : 0844 200 95 95
2. then when prompted, dial the Conference call number (including USA code)
001 712 432 1620
3. then type the access code on your phone keypad: 391629#
4. you are in the conference. You will be asked to 'announce yourself' but you don't need to

discountdial's disclaimer :
The rates stated are based on standard BT rates, for all other operators please check with your provider for the rates they charge to our access numbers. Please beware that mobile operators may surcharge calls to our access numbers. Any surcharges are levied by your own operator, we cannot influence the rates charged by other operators as non BT operators set their own charges on their billing systems.

These type of cheap calls will be available in most countries if you look around. Let us know if you know of any, either here or on the bodyodorsupport forum. Always check for any hidden fees.

The call with Cheryl is likely to be very interesting. If it is busy and you can't connect, it's worth to keep trying or post a message on the bodyodorsupport forum for advice. The NORD fund only needs $30,000 to initiate research and is already at $7k. To donate to the NORD TMAU Fund go to this page and put 'TMAU fund' in the 'in honor of' section

NORD TMAU Fund donate page

Cheryl and a few others from the community have set up a website to promote fundraising for the NORD TMAU fund, rrr-tmau.org

New FMO3 paper from Japan

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

HBRI has stopped testing TMAU until June 2010

The Human Biomolecular Research Institute, run by Dr John Cashman and one of the few TMAU urine testers in the USA, and the only DNA tester, has put an announcment on it's website saying that it has currently suspended TMAU testing. It says they will start testing again in June 2010. The announcement says :

Due to lack of program support, HBRI is not currently accepting samples for TMAU testing. We will accept samples in June of 2010, with results anticipated in the fall of 2010.

This means that as far as we know, the only options for TMAU testing in the USA are :

TMAU urine : Arkansas, either direct or via the Mayo Clinic
TMAU DNA : none known

A UK volunteer does the TMAU urine test twice and gets different outcomes

TMAU urine test results of a UK volunteer

	Jan 2009	Sep 2009	Ref. range
Urine creatinine	5.5	4.0
Trimethylamine(TMA)	56.8	32.1	2.5 - 10.9
TMA-n-Oxide	719.3	78.0	17.0 -147.0
TMA/TMA-n-Oxide	0.08	0.41	0.05-0.21

• The first sample taken in January 2009 was done with a choline food load and while directly pre-menstrual.
• The second sample taken in September 2009 was done WITHOUT a choline load and while NOT pre-menstrual.
• The tester had been following the low-choline diet between the two tests.
• The conclusions were 'secondary TMAU' in the first test, and 'primary TMAU' in the 2nd
  
• This tester is now having the gene blood test done this week. Results will be forthcoming and posted in this blog.
• Note : TMA is trimethylamine. Trimethylamine-n-oxide is the odorless metabolised end product. It is known as TMO or TMAO or TMA-n-O
  

A member of our community has kindly given permission to post her TMAU results in the blog in order to promote discussion on the current test protocol in various countries (there is no international agreed standard). These results are from the UK, and so from Sheffield Hospital, which is the only clinical tester in the UK. The parameters used were described by the tester Nigel Manning in a previous post:

TMA is regarded as normal if the concentration is below 11 micromoles per millimole of creatinine. TMA-oxide’s normal range is below 147 and the ratio of TMA to TMO is normal below 0.21.
SecondaryTMAU is a very broad term, but essentially relates to any TMAU where normal TMA oxidation appears to be indicated. Increased TMA and TMO are usually markers for TMAU2...

Nigel Manning TMAU interview

In simpler terms, Primary TMAU is a reflection of a subnormal level of conversion of TMA to TMA-n-oxide ( lower than normal TMA-n-oxide production is representative of Primary TMAU). Regardless of the TMAO level, Secondary TMAU is deemed as an excessive level of TMA even if the TMA/TMAO ration is within normal limits.

In this case, while taking high choline foods, the first test shows a very high level of TMA, but her FMO3 enzyme was able to oxidize the vast majority of it, and therefore, the ratio was very low/normal. Nevertheless, the TMA present was well beyond the 'normal' range, so she was deemed as having 'Secondary TMAU' as a result.

To further confuse things, Nigel Manning mentions that he has seen cases where someone diagnosed with 'primary TMAU' (including genetic diagnosis) can later be shown to have normal levels of TMA-oxide in a later test (this should be impossible if you have genetic primary TMAU). This seems to be what is shown here. Presumably it is unknown why this is (most likely due to lack of interest from the research community)

Quote from Nigel Manning:

SecondaryTMAU is a very broad term, but essentially relates to any TMAU where normal TMA oxidation appears to be indicated. Increased TMA and TMO are usually markers for TMAU2, however we have seen TMAU1 patients (with proven FMO3 enzyme deficiency by DNA mutation analysis) whose samples also showed this pattern – albeit only temporarily. This makes the differentiation between TMAU1 and TMAU2 difficult without more than one sample to assess and without DNA analysis to confirm a mutation for the FMO3 gene.
In general – if the TMA is consistently increased the patient has TMAU.

Interestingly, in the 2nd test results where the low choline diet had been followed, the outcome diagnosis based on the 'ratio' was 'Primary and Secondary TMAU'. Her TMA level was still too high (secondary TMAU) and her TMA-oxide level was still within normal range, but according to Nigel Manning's ratio she is deemed as not converting the TMA to TMAO to a 'normal' level.

It is unclear if this particular ratio is used elsewhere. There has been mention of a different ratio used in the USA, the percentage of free TMA in regards to the whole TMA and TMAO output : TMA / TMAO + TMA.

The paper by Phillips and Shephard that is used on the NIH website describes the ratio as :

Primary TMAU parameters:

Percent of total trimethylamine (TMA) (i.e., free TMA plus the non-odorous metabolite TMA N-oxide) excreted in the urine as unmetabolized free TMA

• Severe trimethylaminuria: less than 40% of total TMA excreted as unmetabolized free TMA
• Mild trimethylaminuria: 10%-39% of total TMA excreted as unmetabolized free TMA
• Unaffected: 0%-9% of total TMA excreted as unmetabolized free TMA

NIH Trimethylaminuria explanation

It seems that whether using the percentage or Nigel Manning's ratio, both would have concluded roughly the same result here. Her percentages would have been 92.7% normal and 70.9%.

There is a pubmed paper that suggests menstruation could cause someone to be temporarily 'Primary TMAU', even if they are regarded only as a 'carrier' (of a FMO3 mutation). Perhaps the hormones have an inhibiting role on FMO3.

In comparison, three healthy control subjects that harbored heterozygous polymorphisms for [Glu158Lys; Glu308Gly] FMO3 or homozygous for wild FMO3 showed normal (> 90%) metabolic capacity, however, on days around menstruation the FMO3 metabolic capacity was decreased to ~60–70%.

Paper : Transient trimethylaminuria related to menstruation

In a citation paper done in 2008 regarding people who had been deemed 'primary TMAU' by the urine test, the citation went on to DNA test the 12 samples and only 4 were deemed 'genetically proven primary TMAU'.

In a set of our patients, two deleterious mutations were identified in 4/12 patients including a novel T237P sequence variant, while the majority of our patients (8/12) did not reveal any mutations. Some of the latter were double heterozygous for the E158K and E308G polymorphisms which could explain a mild phenotype while others had only the E158K variant which raised the question of undetected mutations. These results indicate that further experiments are needed to further delineate the full mutational spectrum of the FMO3 gene.

Genotypic spectrum and genotype-phenotype correlation of trimethylaminuria

Probably the only conclusion that can be currently made is that it is by no means a completely defined disorder and much more research is needed into trimethylaminuria. Those that can afford the test, it is perhaps best to do the urine test a few times to make sure, and the DNA test once.