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EXPERT INTERVIEWS AND PRESENTATIONS

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NORD TMAU GRANT (one award),
funded by patient group, Trimethylaminuria Foundation,
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Monell Chemical Senses Center
University City Science Center
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“Revisiting TMAU Through Exome Sequencing”
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Saturday, February 28, 2009

Interview : Mark Howard, Manager of Biolab in London : PART 2

This is Part 2 of the interview with Mark Howard; Manager of Biolab Medical Unit in central London
Part 1 can be seen here


Other Biolab tests

* You added an IgE allergy screen recently. Would someone with an IGE reaction always have a bad reaction ? Or could someone have a hidden 'IgE' allergy, or have difficulty defining what exactly they are allergic to ?

IgE allergies tend to result in classical allergy symptoms, so most patients are aware they have a problem, but can’t necessarily identify the substance to which they are allergic. There are also non IgE mediated responses (IgG etc) that cause less severe, and often delayed, responses which are more difficult to identify. IgE reactions do not always lead to severe reactions, there are different levels of reactions, but severe reactions can be life threatening.

* Do you think leaky gut could be a reason for allergies ?

Allergies are more likely to be the cause of leaky gut as allergic responses in the gut damage the gut wall.

* What do you think of IgA or IgG allergy tests ?

As IgA is something we don’t test for I can’t really comment on this. My reply regarding IgA tests also applies to IgG tests, with the addition that with or without IgG food allergy tests patients are likely to face a food exclusion diet/trial to establish the true effect any food groups may have on their health. As some of the IgG food allergy profiles are rather expensive some patients prefer to go straight to exclusion diets.

* Do you think the Volatile Organic Compound test may have relevance to bloodborne odors, even if only indirectly ? It might show up a weakness in the phase1/phase2 detox system ?

I guess this is possible, but I’m not aware that we’ve seen anyone with this problem.

* What tests do you do that provide clues to phase1/phase2 detox function ?

Biolab tests for assessing detoxification capacity centre around essential minerals and enzymes either acting directly or as a co-factor (i.e glutathione, selenium, B vitamins etc.). These should be measured in conjunction with routine biochemistry and liver function tests to provide a wider picture of detoxification capacity.

* Do you think the hair mineral test is reasonably accurate as an 'economy home test' for mineral status ?

At Biolab we are fortunate to have many tools for assessing mineral and toxic metal levels in addition to hair (serum, blood, urine, sweat, erythrocytes, white blood cells, function tests of nutritional status). Hair therefore isn’t always the most appropriate tissue to use and hair levels can be affected by growth rate, sample collection (we need short hair cut close to the scalp). In addition hair treatments and the quantity of hair supplied can be limiting factors. The test can be useful as an indicator of toxic metal exposure and minerals such as zinc, chromium and manganese if found to be low in the hair are highly suggestive of poor overall status. Electrolyte levels and other minerals have poor correlation with circulating levels. The test is perhaps most useful for screening children where a non-invasive test is desirable.

* Is there an 'economy' group of home-tests you could suggest for dysbiosis and possible related problems ? For instance indicans and kryptopyrroles ?

Most of our tests represent good value, but they are generally geared towards doctor and hospital clinics where nurses are available to collect blood samples. So our gut fermentation profile needs to have a blood sample drawn, but our gut permeability profile (which we’re about to re-launch – Spring 2009) can be performed at home and an aliquot of the urine sample posted to us.
The urine indicans test is an indicator of bacterial overgrowths in the gut and/or malabsorption, but it needs to be used as part of a screening process and is only likely to be positive in a relatively small number of patients (about a ¼ of patients with known gut problems).

* Are there vitamins or minerals you find are often surprisingly deficient in general ?

It never ceases to amaze all of us at Biolab just how frequently we find micronutrient deficiencies, and the situation is deteriorating rather than improving. B12, folate, zinc, magnesium, selenium and B1, B2 and B6 deficiencies are regularly identified, essential fatty acid deficiencies and abnormal omega-3:omega-6 ratios are also very frequently observed. Vitamin D is definitely a problem, particularly, but not exclusively, at this time of the year. Of course the majority of patients being tested at Biolab are already unwell and are suspected of having sub-optimal micronutrient status, hence the referral.
We are also seeing an increasing number of raised levels of minerals and vitamins as a result of inappropriate supplementation and this is a growing area of concern. Nutrients in excess can be just as harmful as deficiencies.


final questions

* Is there a typical test result trend for chronic fatigue syndrome ? What are your thoughts on CFS ?
* What are your thoughts on IBS and what do their test result trends look like ?

We have developed a list of disease related Biolab profiles which suggests tests for various diseases/diagnoses which is proving rather helpful to those unfamiliar with this field of medicine (see www.biolab.co.uk/profiles.html). In our experience the patients who benefit most from Biolab tests are those who see a doctor who incorporates nutritional medicine with orthodox approaches, but aims to minimise the use of pharmaceutical intervention if possible. Dietary and lifestyle advice is also essential to obtain maximum, and long-lasting, benefit.

* Who/What are your influences in the world of health science ?
* What does Biolab have planned for the future ?

At Biolab we follow the advances in medicine, biochemistry and nutrition with keen interest (you wouldn’t believe some of our bedtime reading!), and we participate in meetings and conferences for patients, doctors and scientists, as well as arranging our own workshops, with the primary aim of identifying tools that would ultimately help patients. We continue to work to improve our trace and toxic metal analyses, we’re continually looking at, and optimising, our tests of gut function, we’re going to introduce an even more extensive essential fatty acid screen and we’ll be improving our antioxidant screen still further in the near future. We’re also continually reviewing our screening profiles, improving their usefulness and value.
If anyone would like to know more about any aspect of our work, please take a look at our web site at www.biolab.co.uk (due for a major update mid-2009), or contact us directly by E-mail: info@biolab.co.uk


Attached:

SD Editorial, JNEM, Adaptive Capacity
Gut fermentation test datasheet
Fungal type dysbiosis information sheet

Friday, February 27, 2009

Interview : Mark Howard of Biolab Medical Unit, London

While the mainstream medical system may be regarded as the best option for obvious and well-documented health problems, it does not appear very good at dealing with health problems it cannot diagnose or doesn't know about, such as bloodborne body door and halitosis. This explains the existance of niche labs such as Biolab in Central London, which specialises in tests that the mainstream system do not test for, in ways that are just as stringent, such as vitamin/mineral status, and other insightful biochemical tests. They seem to uniquely be the only testers for 'fungal-type-dysbiosis' using ethanol as the marker (after a glucose challenge in a controlled setting). Ethanol is thought to be only produced in humans by fungus. They also use PEG400 as the detector of 'gut permeability', rather than lactulose and mannitol that other labs use. PEG400 can tell more information about gut permeability.

Their website states:

Biolab is a medical laboratory specialising in nutritional and environmental Medicine. We measure mineral and vitamin levels, toxic metals, other biochemical levels that are related to the availability of vitamins, minerals and other nutrients, and we also have an extensive range of profiles for assessing the effects of Twenty-First century lifestyles on our bodies (Tests).

The laboratory is staffed by a highly qualified team and participates in a number of quality control schemes. Many of our tests require expensive high-tech instrumentation and are not normally available at other pathology laboratories. Routine pathology investigations and allergy tests are referred to other laboratories.

However it must be kept in mind that bloodborne odors will likely be an unknown condition even to innovative labs such as Biolab, but nevertheless the tests they do will perhaps be a better bet than the main health system in providing clues into bloodborne odor syndromes (such as fecal body odor) in the long-term.


The following is PART ONE of a 2 part email interview with Mark Howard, Biolab manager, about this pioneering niche lab.
Part 2 is here

Intro/overview

* What is the philosophy behind Biolabs existence ?

Biolab was launched in 1984 as a nutritional biochemistry laboratory offering a range of tests of nutritional status for doctors; tests which were not available elsewhere. With the assistance of our referring doctors our aim was to encourage the medical community to consider nutritional and environmental factors in their assessment of patients.
Our primary philosophy is to assist every doctor and patient to achieve optimum wellbeing by providing access to biochemical assessments that are otherwise unavailable. We are led by our patients and doctors.

* Would you say the tests at Biolab are examples of important missing parts of the main health system ?

We believe it is not possible to adequately assess a patient and provide optimum recommendations without a detailed assessment of lifestyle factors. Biolab provides doctors with tools to assist them in this approach, the majority of which are not available in routine pathology laboratories.

* Are there health problems that the mainstream health system regard as burdens one must bear, that Biolab tests show may be very treatable (e.g. arthritis) ?

The majority of patients undertaking Biolab investigations are those who have not made adequate progress using “conventional” approaches. Many of these patients benefit enormously from correcting nutritional deficiencies, identifying allergies and intolerances to foods and other substances, and quite frequently we find other biochemical abnormalities that have not previously been addressed. I have attached a paper written by our Medical Director, Dr Stephen Davies, that offers an explanation of how our approach can improve an individual’s capacity to deal with illness (i.e. we believe most illnesses develop as a result of decreased adaptive capacity).

pdf file: Dr Stephen Davies article Adaptive Capacity


Bloodborne body odor and halitosis

* Bloodborne body odor/halitosis seems to currently be an unknown problem, apart from trimethylaminuria. Given that the syndrome(s) isn't defined yet, do you have any overall thoughts on the problem, and suggestions as to what 'test' areas to look at ?

Specific approaches will depend on many factors (clinical history, environmental & lifestyle factors, genetic predisposition etc. etc.). There are of course many possible avenues to explore including gut problems ranging from bacterial/yeast overgrowths (fungal type dysbiosis) to digestive problems and possibly increased gut permeability, endocrinological problems, other microbacteria or biochemical abnormalities and problems arising from inappropriate diets. Most doctors using Biolab would undertake a thorough clinical, dietary and lifestyle assessment and would initially check all the routine haematology and biochemistry, assess micronutrient levels (as an indicator of dietary adequacy and absorption, and also as a guide to increased demands for certain micronutrients), consider food allergies (and sensitivities) and assess gut condition. They would also consider exposure to environmental chemicals and toxic metals, which can cause significant disruption to normal physiology.

* Have you heard of bloodborne odor problems or even had patients attend the lab with odor

Over the years we have seen a number of patients with odour related problems, but in most cases the cause has been identified as of dietary origin, gut dysbiosis, hormonal problems (resulting in profuse sweating), and of course diabetic ketoacidosis.

* Do you think 'classic' external armpit body odor could be to do with an internal problem ? (e.g. low zinc)

Assuming that adequate and appropriate personal hygiene is in place, then abnormal biochemistry could lead to profuse sweating, sweat with abnormal chemical composition, or the presence of unusual compounds in the sweat, all of which could lead to unusual body odour. It’s theoretically possible that variations in the chemical composition of sweat could affect bacterial growth rates, but thisis purely hypothetical and I do not have any specific details on this.

Candida

* Is gut candidiasis a common problem ? Do you think it is 'overhyped' as a health issue (do you have an estimated ratio of candida dysbiosis compared to other dysbiosis alcohols tested for ?)
What is your highest candida-sourced ethanol reading ?
* Do people with gut candidiasis often fail other Biolab tests ? Is there a trend ?
* What sort of health problems or symptoms do you find associated with candida overgrowth

Candidiasis may not always be a mistaken diagnosis, but our test is not specific to candida albicans so all we can definitely say is that there is fungal activity. Stool analyses can determine the type of fungus, but the treatment strategy is the same whatever.

It’s not possible here to give a comprehensive answer to all of these questions, but yeast (not solely candida. Our test is not specific to candida albicans so all we can definitely say is that there is fungal activity. Stool analyses can determine the type of fungus, but the treatment strategy is the same whatever) and bacterial overgrowths in the gut appear to arise quite frequently in sick patients, either due to a compromised immune system or long-term antibiotic therapy that disrupts the gut flora. Our gut fermentation profile detects alcohols in the blood as a result of fermentation of glucose in the gut 1 hour after the ingestion of 5g of glucose following a fast and abstinence from alcohol beverages. I have attached a copy of our test datasheet for this test for your interest and a further article on “Fungal Type Dysbiosis”.

pdf file: Gut Fermentation Profile
pdf file: Fungal-type dysbiosis

It is wise for all clinicians to suspect abnormal gut flora if the symptoms suggest this until proven otherwise through testing, dietary changes and/or appropriate antifungal therapy. Increases in blood short-chain fatty acids and some alcohols other than ethanol may indicate bacterial overgrowths (whereby breath hydrogen and breath methane measurements may be suggested), or urea breath tests for helicobacter pylori. We don’t frequently see evidence of bacterial and yeast overgrowths at the same time, but it does happen sometimes.

Dysbiosis and Leaky gut

* Does leaky gut mean 'leaky small intestine' ? What are the common reasons for leaky gut ?
* What are the spectrums of problems you think possible with leaky gut ?
* Why do you use the PEG leaky gut test rather than lactulose/mannitol test that other labs use ?
* You test for other alcohols in the gut fermentation test. Do you find often that candida sufferers also have those alcohols increased too ?
* If someone has no candida problem but the other alcohols are raised, what sort of health problems do you expect they could have ?
* Are there other Biolab tests you suggest for dysbiosis ? (e.g. vitamin status tests)

Some of the above questions were answered in my previous response.
Increased gut permeability, primarily of the small intestine, can occur for many reasons (gut infections, food reactions, impaired digestion etc.). Health problems resulting from increased gut permeability are wide ranging because there can be an immune response when food is absorbed before complete digestion has occurred, micronutrient deficiencies can develop if the gut is not functioning properly and short-chain polypeptides (resulting from incomplete protein digestion) can mimic hormones, disrupting metabolic processes. At Biolab we can measure gut permeability by looking at the absorption profile following ingestion of a substance with a range of known molecular weights (we look at the quantity of each molecular weight excreted in the urine) and we also measure blood levels of short-chain polypeptides. We are currently expanding our research work in these areas and hope to offer even better tests in the coming months. The benefit of using PEG 400 (polyethylene glycol) in our profile is that it gives us a wide range of molecular weights to assess thereby providing a more comprehensive profile of gut permeability than the sugar challenge tests that are commonly used. This is useful in assessing the severity of increased gut permeability and also for monitoring treatment progress (which can be problematic due to the mult-factorial nature of the problem).
When gut dysbiosis has been diagnosed it is important to assess all aspects of nutritional status as adequate dietary absorption is likely to have been impaired for sometime. As dietary analysis isn’t going to provide all the answers, laboratory testing of mineral, vitamin and fatty acids levels is important to identify any deficiencies that need urgent rectification, or that are going to be difficult to correct with diet alone.


Part 2 here


http://www.biolab.co.uk/

Thursday, February 26, 2009

2009 paper on underarm body odor : Acid odor precursors in axillary secretions

This is a newly published medical paper about underarm body odor by a group of researchers at a Swiss fragrance company. They have done quite a bit of research over the years on this subject. At first glance, they seem to be saying that body odor can depend on certain compounds internally produced in the sweat. Perhaps they are then broken down by certain types of bacteria and this is why many people could probably not bathe at all and be smell-free, whilst others seem to have problems if they miss a few hours or forget to use anti-perspirant.


http://www.ncbi.nlm.nih.gov/pubmed/19147808

Gender-specific differences between the concentrations of nonvolatile (R)/(S)-3-methyl-3-sulfanylhexan-1-Ol and (R)/(S)-3-hydroxy-3-methyl-hexanoic acid odor precursors in axillary secretions.

Firmenich SA, Corporate R&D Division, PO Box 239, CH-1211 Geneva 8, Switzerland.

The volatile fatty acid, (R)/(S)-3-hydroxy-3-methylhexanoic acid ((R)/(S)-HMHA), and the human specific volatile thiol, (R)/(S)-3-methyl-3-sulfanylhexan-1-ol ((R)/(S)-MSH), were recently identified as major components of human sweat malodor. Their 2 corresponding precursors were subsequently isolated from sterile and odorless axillary secretions. The purpose of this work was to analyze these 2 odor precursors in 49 male and female volunteers over a period of 3 years to elucidate to which extent they are implicated in the gender-specific character of body odor. Surprisingly, the ratio between the acid precursor 1, a glutamine conjugate, and the "sulfur" precursor 2, a cysteinylglycine-S-conjugate, was 3 times higher in men than in women with no correlation with either the sweat volume or the protein concentration. Indeed, women have the potential to liberate significantly more (R)/(S)-MSH, which has a tropical fruit- and onion-like odor than (R)/(S)-HMHA (possibly transformed into (E)/(Z)-3-methyl-2-hexenoic acid) that has a cheesy, rancid odor. Parallel to this work, sensory analysis on sweat incubated with isolated skin bacteria (Staphylococcus epidermidis Ax3, Corynebacterium jeikeium American Type Culture Collection 43217, or Staphylococcus haemolyticus Ax4) confirmed that intrinsic composition of sweat is important for the development of body odors and may be modulated by gender differences in bacterial compositions. Sweat samples having the highest sulfur intensity were also found to be the most intense and the most unpleasant.


The head researcher in the paper has also patented some type of anti underarm body odor product

http://www.implu.com/patent_application/20080025935

Wednesday, February 25, 2009

Poll: Bloodborne body odor : Gender

Bloodborne body odor : Gender

Your own website on Webon for free

http://webon.angelfire.lycos.com/

Body odor and halitosis sufferers may feel overwhelmed by the 'knowledge' involved in setting up a website to inform, or to express themselves ... but some companies make it very simple. The new website-builder by webon-lycos-angelfire makes it easier than posting in a blog to put up quick, reasonably attractive, no-frills websites for free. The 'catches' haven't been fully examined yet, but the 3 so far noticed on the free version are :

no javascript (no fancy stuff)
300 images maximium ? (quite a lot)
4 videos (?)

Most people should understand how to put up a page or more. You use drag and drop to place images/video etc. There are basic templates too. Overall, as a starter to get used to website building, it is very good for free. You can buy full hosting and domain registration from them if you want, although it's probably cheaper elsewhere.

Here is a demo for meboresearch, as an example
meboresearch.webonsites.com - demo website

Tuesday, February 24, 2009

2007 paper : Monell Senses Center : Trimethylaminuria in a sample of body odor and halitosis visitors

Medical Paper 2007: Human breath odors and their use in diagnosis.

Whittle CL, Fakharzadeh S, Eades J, Preti G

Monell Chemical Senses Center, 3500 Market Street, Philadelphia, PA 19104, USA.

http://www.ncbi.nlm.nih.gov/pubmed/17435133

This is probably the current medical 'signature' paper on the concept of systemic body odor, albeit, it seems as if they only accept trimethylaminuria in regards of this concept, and possibly will historically be seen as an interim paper until serious research into systemic odors is conducted broadly by the medical community. The paper is thought-provoking nevertheless, but unfortunately the full paper is not available free. If anything, it shows how far off we are to understanding fecal body odor and such types of systemic odor problems which seem to be the most common type on the body odor forums. An especially interesting point is that out of all those who attended the Monell Center in the paper (300+); of the 102 who went on to fail the TMAU urine test, it seems very few could be smelt (10% ? after the choline challenge ?), and of the 6 who done a certain group of tests, only the 2 with the severe TMAU smelt of fish (?). It isn't clear exactly was meant in these statements, and would need to be clarified.
...In our population, all of whom have been seen in person, the fish odor presentation was present in only about 10% of individuals who
are TMAU-positive. Further to this point, these individuals emitted a strong fish odor recognizable at social distances only after choline challenge...

... TMAU is known to be caused by a “spectrum” of genetic changes to the gene that codes for FMO3. Consequently, this variation may be due, in part, to differences in the genotype of each of the TMAU-positive individuals. This is supported by our clinical observations regarding the odor of different individuals as well as genotyping data. Two of the six TMAU-positive individuals whose saliva was analyzed presented with overt fish odor from their upper body and oral cavity after (∼22 h) choline challenge. As noted above, each of these male subjects had a low conversion of TMA to TMAO (<25%)

Amongst other things, this paper eludes as to how the odor in TMAU varies in type of odor as well as in its inconsistent manifestation, since it may be sporadic. This intermittent presentation frequently results in the sufferer being referred to a psychiatrist when family members or physicians at times don’t smell the odor, and therefore arrive at the conclusion that the sufferer has developed an Olfactory Reference Syndrome. This seems to be the biggest source of conflict between sufferers and their families and or physicians.
TMA is a gas at body temperature and has a foul, rotten fish odor. At low concentrations it may be perceived as unpleasant or garbage-like...The main difficulties experienced by TMAU-affected individuals are psychosocial ones that are caused by sporadic, undiagnosed odor production.
They mention that a 'fish odor' for trimethylaminuria is not always correct, and that it can vary . The discussion section of this paper (page 10) states,
Consequently, the assumption that the individual with TMAU will always smell "like fish" is incorrect and is often the reason that many TMAU-affected individuals are sent from one clinical specialist to another: quite often they are sent to a psychiatrist since their reported symptoms are thought to be subjective.
On the Monell website, they mention trimethylaminuria causing other smells, but not fecal or gas odor. It's up to each reader as to how to interpret this omission of what seem the most common smells on the body odor forums.
TMA has a foul, fishy odor. At low concentrations, it may be perceived as unpleasant or “garbage-like.”

http://www.monell.org/TMAU/pretiTMAU.pdf (pdf download)

Monday, February 23, 2009

The Miami Meet-Up this coming Spring has been postponed

I regretfully need to inform everyone that as discussed in the last two conference calls this past month, it has been determined that it is best to postpone the Miami Meet-Up that was to be held in May 2009. This is a result of the unfortunate economic crisis we are facing worldwide, which is adversely affecting people’s ability to attend considering the expenses involved in taking such a trip. It is my hope that when the economy improves, we can reschedule this event that so many of us were looking forward to.

Saturday, February 21, 2009

Body Odor and Halitosis : Political lobbying in the USA

contacts:
Email your Senator about systemic body odor and halitosis
Email the Senate Health commitee about your systemic body odor and halitosis
Email your Representative about systemic body odor and halitosis
Email the Whitehouse about systemic body odor and halitosis
Email the NIH about your systemic body odor and halitosis
Email the NIH Rare diseases dept about your systemic body odor and halitosis


MeBO Research hopes to influence politicians in the future. In the meantime, perhaps sufferers would like to write to the politicians themselves. Below is an example email that could be used. There is no other problem with so much shame and mental confusion, and probably subconsciously it may be viewed as trivial. but as sufferers know, it is far from trivial, and a tragedy that nothing is being done about it or even recognised by the medical community or accepted as a disability. It probably is amongst the highest suicide rate for 'non-essential' health issues. Perhaps it is behind a few unexplained suicides.

The letter below does not have to be used, although it can be. Anyone wishing to contact the politicians could use their own words or variations.

Dear Sir/Madam

I write to you with regards the socio-economic problems of body odor and halitosis, to raise awareness and to promote funding for research. You may not be aware that, thanks to the internet, it has become clear that most body odor sufferers have a SYSTEMIC body odor/halitosis issue, the problem being internal/bloodborne/metabolic. While trimethylaminuria is the only really recognised systemic odor condition (by the National Institutes of Health and those few physicians who are aware of it), it has become clear on internet forums that most sufferers have all sorts of systemic odor problems that incude fecal/gas/garbage/sewage smells through their skin, bodily fluids and breath.

To elaborate on my own problem with this disorder, I ... (tell a bit about your own problem, including especially the type of odor)

The NIH has set up a few Taste and Smell clinics over the years, with the aim of dealing with problems affecting the senses of taste and smell. Whether people kill themselves with these types of disorders, or how much it affects life quality and careers, is unknown to me. It must be very unlikely that someone with these disorders who is a fine worker would affect productivity, or be viewed as a burden to the management. They wouldn't seem to affect national productivity, and the misery must be limited to a degree.

Compare that to systemic body odor and halitosis. Do you not think it would be a very good idea for the NIH to set up a Body Odor and Halitosis research center and clinic(s) ? Any scientist involved in such a task would soon find that most sufferers who care about this problem have a metabolic type of odor problem, but it could also research the classic external kind as well. I think you would find systemic body odor and halitosis is far more common than thought. The only recognised type of systemic body odor is trimethylaminuria. If you check how sufferers in the USA currently get any sort of medical interest in this condition, I think you will be dismayed. Geneticists estimate 1% could be at risk of transient TMAU. People kill themselves over this, life goals can be written off, and it probably affects the economy and social security system.

It would be in the nations (and the worlds) interest to research systemic body odor and halitosis.

There are many other ways the government could help, such as setting up job opportunities for sufferers that involve staying at home (such as internet jobs). The misery of such a problem, and burden on society, cannot be understated.

Below are 4 websites that may help you in understanding the size of this problem. Anyone investigating the problem will find it to be quite a sizeable issue.

http://www.bloodbornebodyodorandhalitosis.com/
http://www.bodyodorsupport.com/forum.php
http://health.groups.yahoo.com/group/Trimethylaminuria/messages
http://curezone.com/forums/f.asp?f=326

If you need further information or more convincing, you could contact me or the above links. It is not a rare problem.

thank you,
name

I sent an email to ... (pick one or more)

Friday, February 20, 2009

Agenda from the second (2002) Trimethylaminuria workshop

2nd Trimethylaminuria workshop (2002)

This page on the NIH National Office of Rare Diseases website lists the agenda of the Trimethylaminuria workshop over that weekend in March 2002. you could say it's a 'who's who' of FMO3 researchers and those with an interest in trimethylaminuria.

http://rarediseases.info.nih.gov/asp/html/conferences/conferences/trimethylaminuria20020315.html

Thursday, February 19, 2009

What should be done with the personal donations to MeBO ?

These are some provisional ideas:

Proposed methods of raising funds for Mebo Research :

1 .corporations/businesses/organisations/benefactors
2. personal donations. Expected to be much lower, but sufferers have a right to be able to donate. At the start, this source would likely be 100% of the income source.

Primary Aims :

To upkeep MeBO Research as cost-effectively as possible
To promote awareness of all systemic body odors and halitosis (e.g. get politicians involved)
To promote and/or conduct research into systemic body odor and halitosis
To get metabolic body odors recognised as a disability

With the arrival of MeBO Research, our pre-charity company created for the main purpose of researching and raising awareness about systemic body odor and halitosis, hopefully including external body odor and local halitosis (but systemic is the priority), it is envisaged there will be 2 forms of income: one, in the long-term, is from philanthropists, corporations, private businesses, and government agencies; and the other is from personal private donations. The main aim is to get contributions from commercial groups and government agencies so that work can start on a body odor and halitosis research center and clinic(virtual or not), and other projects.

mebo research into body odor and bad breath and odor and sweating The question arises as to what to do with the personal donations. Personal donations will likely be much smaller than from commercial groups and government agencies, but will likely be the initial only source of income. Nonetheless, it is hoped to put this fund to immediate good use for the benefit of our body odor and halitosis community. The obvious priority would be the minimal upkeep of MeBO Research to enhance our ability to further this cause, but it is hoped to also make some instant use of the money in ways which will help the community to find out what is wrong (diagnosis) and to encourage outside help (raise awareness).

One idea is to do small anecdotal studies to try to identify a pattern into systemic body odors. An example would be a leaky gut study, where members of the forum are offered the leaky gut test funded by MeBO. This study would not tell us anything conclusive, but if those that participate have leaky gut, it may tell us it could be a factor. Another example is B vitamin status. Many B vitamins are produced by a good gut flora. B vitamins are involved in many enzyme functions (often being a cofactor). If there was a vitamin deficiency involved, it would likely be a B vitamin. These amateur studies are far from ideal, but may tell us something, and are probably more enlightening than where we currently are. These small studies may also act as a focus and a template as to what the group can achieve in the future as well.

These are currently just opening suggestions, and it would be interesting to see what other ideas people have. The premise being that any income in the first few months will likely be from personal donations, so our challenge will be trying to make best use of these funds in an inspiring and hopefully most meaningful and efficient manner. Of course, the upkeep of the pre-charity is the priority, in an effort to prolong its life to further optimally serve this community, and the disbursement of funds will be as transparent to the community as possible.

Possible areas of speculative testing with personal donation money:

genetics : DNA tests. FMO3 testing. Detoxigenomic test
vitamin status : probably B vitamins mostly
mineral status : Magnesium ?
dysbiosis tests : candida, parasites, etc.
leaky gut testing
Trimethylaminuria testing
Malodorous Volatile Organic Compound testing

Tuesday, February 17, 2009

My sons' and my body odor side effects

body odor
My only two sons and I have experienced similar body odor related symptoms as well as similar symptoms to others in the forum as described below. We have had varying degrees of odor with my older son having the strongest and me having the mildest of the three of us.

I disclose all this personal information with my sons' consent in our struggle to fight against any odor-phobic tendencies we may have, to promote social awareness, and in hopes that experts take note to help us find answers.

My husband and I are pretty good at detecting the odor emitted by both my sons and myself, so most of this observation comes from us.

Unfortunately, since the scientific/medical community has not yet discovered all but one of the metabolic conditions that produce these unmetabolized compounds, they don't have answers for us, so sometimes they dismiss our ODOR complaints as being all in our mind! Other times they do smell it.
My older son): His sweat on his neck burns and frays the collars of his clothes; and the sweat on his hands and arms has bleached his black wrist cushion where he rests his hands when he writes on his computer, and he frequently has rashes on his hands, arms, neck, and chest. His abdomen has been swollen and painful (distended) most of his life, and only gets better, and sometimes completely normal, only when his odor decreases or is eliminated; he was born with asthma, and according to his asthma and allergy doctor, it's a miracle he's alive due to his severe allergies which often produce strong and widespread skin rashes. He becomes extremely fatigue when his odor increases, as he becomes easily intoxicated with meds, foods, and the environment. As his odor increases, all these symptoms increase, and as his odor subsides, these symptoms subside. Odor description: Fecal body odor and strong fecal breath; garbage-like full body odor; rotting dead animals; very strong mangrove-type urine odor. No 'typical' underarm or foot odor.

My younger son: is color blind and lactose intolerant with digestive problems all his life. He was born with asthma, has complex partial seizures and learning disabilities, has strong tendencies of having tendonitis, inflammation of muscles and joints that take a long time to heal (though ruled/out rheumatoid). He also suffers from body odor. I have to wash some of his clothes three times in a row to get the smell off. Odor description: Somewhat similar to my older son's but less 'deep decomposing-type' odor, and sporadic mild bad breath. Also, has sporadic strong underarm odor not controlled by deoderant. has strong scalp odor, leaves the room and the car smelling like a football teams locker room. No foot odor.

myself: I was born with asthma, have rheumatoid arthritis and fibromyalgia very much triggered by certain foods that also cause me to have odor - primarily alcoholic beverages, foods that have preservatives (almost everything), and foods high inTMA and choline. I have allergies to environmental triggers, including some (not all ) fragrances, molds, mildews, grasses and trees. My immune system is completely out of whack and I'll shift from having been in near death experiences numerous times with antibiotic-resistant E Coli in the blood and MRSA, to an overactive autoimmune system that reacts to everything producing skin rashes, fatigue, asthma, fibromyalgia, and severe rheumatoid arthritic flare ups. My odor tends to increase around the same time that my symptoms increase. However, in early menopause and after a complete hysterectomy, my odor has decreased significantly, also resulting from mega doses of antibiotic to kill antibiotic-resistant infections . I currently do take low doses of premarin. Odor description: Perhaps a very mild version of my sons' odors. When I eat an excessive amount of high choline foods or drink just one glass of alcoholic beverage, I get halitosis, odor in my scalp, oils and sweat throught my body, ordorous urine and groin area.

I BELIEVE THAT WE ARE NOT A HYPOCHONDRIACS AND IT IS NOT ALL IN OUR MIND (ORS)!

MY THEORY: I have my own theory as to the cause of these symptoms, and that is that as our unmetabolized compounds (some odorous and others non-odorous)stay in our systems, our bodies interpret these compounds and try to cope with them as if they were foreign bodies (bacteria, viruses, etc) that are threatening our bodies and putting us in danger, so our immune system attacks those areas in our bodies in which these compounds are stored. Our immune system tries to 'kill' these compounds in places where it attempts to release them from our bodies, like our lungs (producing inflammation), skin (producing rashes), etc. Our immune system attacks our muscles, tendons, joints, and most tissues (arthritis, fibromyalgia, tendonitis, etc.) and wherever these compounds may be found in our bodies. These compounds basically put us in a state of intoxication (CFS), and our bodies violently fight against these ‘invaders’ with our immune system and all the ‘cleansing organs'. Unfortunately, since the medical community has not discovered these metabolic conditions that produce these unmetabolized compounds yet, and they don't have answers for us, they tend to dismiss our complaints as being all in our mind, although many doctors have smelled us, especially my older son!

SO WE REMAIN IN THE DARK!!!

Monday, February 16, 2009

Journal of Breath Odor Research

The Journal of Breath Odor Research seems to be closely aligned to The International Association for Breath Research (IABR) and The International Society for Breath Odor Research (ISBOR), 2 associations which are now closely affiliated and are holding a joint conference in Dortmund this April : Breath odor / breath research Dortmund conference

Journal of Breath Research

Whilst most of the papers are not free, it is at least comforting to know that bad breath research at least has it's own medical paper nowadays.

Sunday, February 15, 2009

2008 study : All halitosis sufferers in the study have solobacterium moorei

Oral biologists at the University at Buffalo UB School of Dental Medicine) recently (May 2008) decided that the bacteria species, Solobacterium moorei, was directly related with halitosis cases. In their study, they deemed that everyone who had halitosis also had this bacteria, whereas the majority of non-halitosis cases didn't.

A caveat with these sort of studies is that these studies appear on pubmed and seem to come and go, with no-one else following up or someone posting alternative outcomes. This would also only apply to 'local' halitosis rather than bloodborne halitosis.

http://www.buffalo.edu/news/9291

Friday, February 13, 2009

1983 review paper: The Diagnostic Potential of Breath Analysis

Approximately 200 compounds have been detected in human breath, some of which have been correlated to various diseases. With the advent of new technology that may permit the rapid analysis of breath, further progress can be anticipated in the use of breath metabolites for the diagnosis of disease, including neonatal screening, toxicology, and metabolic disease.
This 1983 paper is of interest mainly because of it's lists (which may or may not be outdated), demonstrating the potential of detecting compounds through breath. Particularly from alveolar breath, which is breath from the lungs that is being exhaled from the system. Such as the way breathalyzers detect alcohol. The lists demonstrate the authors thoughts on potential compounds that could be detected at the time. Trimethylamine gets a brief mention.

Breath analyzers certainly seem a potentially useful tool in diagnosing systemic body odor and both types of halitosis. Perhaps someday there may even be portable breathalyzers for the detection of compounds such as trimethylamine, so that sufferers can monitor their trimethylamine levels. Or trimethylamine test papers so that urine can be easily tested. Perhaps this sort of technology is already out there but they don't realise there is a market.

The metabolites excreted in the breath may be divided into five groups:

1. Lipid degradation products: Numerous diseases will affect the concentration of total serum fatty acid or the fatty acid chromatographic pattern in the breath. Breath acetone has already been shown to be useful in monitoring diabetes(13).
2. Aromatic compounds: Toluene and other alkylbenzenes, furan, naphthalene, and p-tolualdehyde have been detected in the breath (9-11). The origin of these compounds in the breath is generally not known.
3. Thio compounds: Methanethiol, ethanethiol, dimethylsulfides, and, in smaller concentrations, higher alkanethiol and alkylsulfides are present in human breath (9-11). Increased concentrations of specific thio-compounds have already been shown to have diagnostic significance in cirrhosis(14, 15) and ovulation (16).
4. Ammonia and amines: Ammonia would be expected to be increased in hepatic disease (although serum ammonia does not correlate well with hepatic coma) (17). Dimethylamine and triethylamine are increased in uremia (18).
5. Halogenated compounds: These are probably derived from inhaled, injected, or absorbed environmental pollutants and are of interest in industrial toxicology (8).

http://www.clinchem.org/cgi/reprint/29/1/5

Thursday, February 12, 2009

Video : Lady undergoing underarm surgery for bromhidrosis in the early 1990s

video
This story is from a British TV documentary from the early-mid 1990s. The lady feels she has bromhidrosis and hyperhidrosis, and decides to have underarm surgery.

Wednesday, February 11, 2009

Does CIGNA help with trimethylaminuria diagnosis ?

CIGNA (a medical insurance company in the U.S.) has a write-up under their Health & Money section entitled, ‘Trimethylaminuria’. It has information provided by NORD for informational purposes only.

Since it is posted in the CIGNA website, it would stand to reason that CIGNA would cover the testing for TMAU done in the Arkansas Lab or through the Mayo Clinic (via Arkansas lab). However, it is recommended that CIGNA members verify with CIGNA to make sure their policy covers this test prior to testing.

TMAU testing have been covered by some insurance carriers, such as Blue Cross Blue Shield, nonetheless, one should always verify first with your respective carrier.

http://www.cigna.com/healthinfo/nord997.html

Tuesday, February 10, 2009

New type of hypnotism : passive songs

video

This is a new(?) form of hypnotism, based on the old 'autosuggestion' technique. Rather than relying on induction into a trance like state, they are using the music to set the mood, with the hypnotist saying positive phrases to penetrate the thought patterns. Its a passive form, so you can listen to the songs as if ordinary songs. He suggests starting with the above 'song' 3 times a day for 30 days, to open up the mind to change, and then choose whichever of his other songs you want to change a problem

Mental condition is important for anyone with body odor and/or halitosis of any kind, since the condition has such an impact on self-esteem. Hypnotism is a powerful way of changing mind patterns, but obviously those with body odor and/or halitosis may be very resistant to the induction process needed to get the mind in a suggestive trance. Especially if relying on an mp3. Also, hypnotists who sell mp3s/cds online at the moment normally have little for the public to go on to make a decision on their quality, and the product is normally quite expensive.

A British hypnotist, Jonathan Chase, has come up with a new type of hypnotism that seems to deal with both the above problems. It is passive hypnotism based on short 'songs' using autosuggestion (the sticking principle), and also he has listed them on amazon MP3 section for $1 each (so you can pick what you want).

He suggests using the above video (you can download the song from amazon) 3 times a day for 30 days to get the mind in the right frame, and then choose your other songs by him to bring about whatever change you want. If it doesn't work, At least its a lot cheaper than the usual online hypnosis offerings.


related links:
about autosuggestion
Jons site about his CD of songs (amazon is cheaper to buy) : http://shop4hypnosis.com/wide-awake-hypnosis.htm
Jons 'Academy of Hypnotic Arts' : http://www.learn-hypnosis.com/
Jons youtube channel : http://www.youtube.com/user/JonChase

Jons hypnosis songs are cheapest on Amazon

Monday, February 9, 2009

Our Conference Call Yesterday

I would like to thank all those who participated in our conference call yesterday. It was very nice to hear old familiar voices and two new ones that I had not heard before.

As in all conference calls, we discussed remedies and diets, and as usual, we could clearly see how not everyone responds the same to each diet and remedy. In this exchange of ideas, we all got a better picture of the complexities of our condition and the best ways to treat them. Everyone is invited to join these conference calls on a regular basis to listen to these very interesting discussions.

there have been no programs in the US or UK that even remotely come close to funding research into metabolic body odor or systemic halitosis in the past few yearsWe talked at length about our new forum designed by Arun and created by Matt and Kristen. They have done such a great job, and we thoroughly enjoy the privacy of having our own site that we can call home. We did point out how important it is not only to post new threads in the forum but also to reply to posters, especially when they are pouring their hearts out.

The economic changes around the world have threatened the livelihood of many people, but in the case of a body odor sufferer, the threat is even greater, since frequently, this condition places sufferers on top of the layoff list. We discussed how many members of this community tend to suffer from depression as a result of this and other situations in life, especially now after the holidays. As we customarily do in our community, we tried to lift each other up during the call in an effort to support each other.

As pointed out in the call, our anthology project to raise social awareness of BO conditions served as the first phase of our emotional healing in which we poured our hearts out about our depression and anxiety caused by living with a BO condition. Now that the anthology is finished, all are encouraged to continue writing poems, essays, and short stories in our forum to continue with the healing process.


We discussed at length our new non-profit organization, MEBO Research, which I registered in the UK only two days ago. The company goals were mentioned, but the obstacles we face as a community united under this banner was emphasized.

As Arun had pointed out in previous conference calls and meet-ups, there have been no programs in the US or UK that even remotely come close to funding research into metabolic body odor or systemic halitosis in the past few years. It appears that the authorities in these countries just don’t think that breath malodor or body odor is a sufficiently important problem to justify the investment of government research dollars.

Basically, the problem is that research funding comes from governments, and governments are, by definition, political. At the present time, Research & Development funds gets channeled to popular “high profile” diseases like cancers and diabetes, for example. In order to get some funding for metabolic body odor and systemic halitosis, we as a community need to continue to strive to promote social awareness and to make our presence known to our respective politicians.

We would also be wise to try to upgrade MEBO from a limited by guarantee company to a registered charity, which would cost approximately £1,500/$2,200, because by doing so, all donations would be tax deductible by the donor. This would then enable us to pursue research funding from private foundations.

Many more topics were discussed in this conference call. We hope you join us in the next General Conference Call to be held on Sunday, February 22nd at 2:00p.m./EST.

Sunday, February 8, 2009

Join us on our Conference Call today


It is now only up to each of us to pick up the ball that has been thrown in our hands and to run with it.Please join Glenna, Sharon, and me on today's conference call. We have much to discuss, particularly our new forum founded and designed by Arun and created by Matt and Kristen. We want to hear from you. Give us your feedback on what you like about the forum and what changes you would like to take place to make it even better for us.

I would also like to discuss the new limited by guarantee company that I have just created for each and every one of us. The main objective of this non-profit organization is to promote scientific and medical research into the causes and treatment of all body odor conditions, particularly of metabolic, systemic, and or blood-borne conditions or disorders that produce localized or generalized body odor and or halitosis with the objective of finding a cure. I would like to discuss with you how we can work together to promote this mission. Please be prepared to share your creative ideas and to volunteer to help bring them to fruition. We have power in numbers. We will be effective in this endeavor only in as much as each of us participates.

As usual, the conference calls are an open forum so that anyone can introduce their own topic of discussion. Let's focus our efforts into making the year 2009 an even better year than 2008. In 2008, we joined together inspired to tell the world our story in our anthology. All this work would have been in vain if we don't use it now to obtain these objectives. The wherewithal is in our hands with our new private forum and our non-profit organization to more effectively reach out to benefactors and experts and ask for answers. It is now only up to each of us to pick up the ball that has been thrown in our hands and to run with it.

Hope to see you all at our call.

María

Thursday, February 5, 2009

MEBO Research, our new non-profit organization

I am happy to announce that my Limited by Guarantee Company is now incorporated in England and Wales under the name of MEBO Research on February 5, 2009, and ready for business. The sole objective of this company is to support research on metabolic body odor (MEBO) and systemic halitosis, and to raise funds for this purpose.

It is basically a non-profit organization and a stepping stone to becoming a charity. We will now have a company solely dedicated to fundraising and all the proceeds that we get from our anthology and any other fundraising activity we may undertake will have tax-exemptions because it is a non-profit organization.

There will be more fundraising endeavors forthcoming very soon. If anyone has any fundraising ideas that we can pursue as a community, please let me know.

If anyone has any fundraising ideas that we can pursue as a community, please let me know.We are in the process of creating a website for MEBO Research, but meanwhile we will be using our blogs for announcements and fundraising organization efforts.

María de la Torre (mpdela)

Anthology Update 4: http://www.bloodbornebodyodorandhalitosis.com/2009/01/anthology-update-4_13.html

IABR compiling a Database of volatile substances (such as in breath, flatus, skin, feces, urine)

The International Association for Breath Research (IABR), founded in 2005, is compiling a database of all known volatile substances in human and animal gases. It will include data on all gases no matter how they escape the body (breath, skin, flatus, urine, feces etc). The 'volatomics' database should be completed and viewable this year. The public will be able to view it on the IABR website

This will be another weapon in getting metabolic body odor and halitosis recognised, as well as hopefully stimulating interest and research. It will be a reference point that people can refer to. For instance, in convincing doctors, or in looking for previous records of certain compound smells (instead of having to look pubmed). It will be stronger evidence than when currently have.

Based on discussions held at the IABR Conference in Prague in September 2006, IABR has decided to support the creation of a comprehensive database of research on human and animal gases. IABR’s goal is to complete the design, beta testing and refinement of this “volatomics” database by 2009, after which it will be made accessible to both IABR members and the public via the IABR website.

The project is being coordinated by Norman Ratcliffe of the University of the West of England (UWE), who conceived this project in 2005 and had already begun working on it with the help of a graduate student, James Kingscott. He is now recruiting other IABR members to assist with either the design phase or the beta testing, or both phases, that will follow in 2009. Other members of the design committee include Anton Amann (Innsbruck), and Martin Pienz (Innsbruck), who has generously agreed to program the database for web-hosting in MySQL format...

...As currently envisaged, the database will contain data from studies of exhaled breath as well as other sources of endogenously-derived gases, such as skin, urine, faeces and flatulence. Each record in the database will be based on a specific report from some published source, such as a journal, book, conference program, or on-line publication.

Visitors to the IABR website will be able to both search existing records and enter new records using a series of related hierarchical forms which, to simplify data entry, will make extensive use of ‘pull down’ menus and pre-defined lookup tables.

http://www.iabr.li/

Wednesday, February 4, 2009

2006 paper on Isovaleric Acidemia : 'sweaty feet syndrome'

Isovaleric acidemia: new aspects of genetic and phenotypic heterogeneity



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

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

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

Also, of interest is the use of the word 'heterogeneity'. Presumably they mean the mild cases in the study had 2 known mutants or variants of different type, rather than 2 mutants of the same type (autosomal recessive ?). It looks as if this is similar as to how the loosening of the genetic rule on trimethylaminuria may go, still taught as autosomal recessive, although testers seem to be going towards it being heterogenous ... and possibly both health problems will turn out autosomal dominant for 'mild' cases (if you think transient smelling is mild).
...Initially, two phenotypes with either an acute neonatal or a chronic intermittent presentation were described. More recently, a third group of individuals with mild biochemical abnormalities who can be asymptomatic have been identified through newborn screening of blood spots by tandem mass spectrometry. IVD is a flavoenzyme that catalyzes the conversion of isovaleryl-CoA to 3-methylcrotonyl-CoA and transfers electrons to the electron transfer flavoprotein. Human IVD has been purified from tissue and recombinant sources and its biochemical and physical properties have been extensively studied. Molecular analysis of the IVD gene from patients with IVA has allowed characterization of different types of mutations in this gene. One missense mutation, 932C>T (A282V), is particularly common in patients identified through newborn screening with mild metabolite elevations and who have remained asymptomatic to date. This mutation leads to a partially active enzyme with altered catalytic properties; however, its effects on clinical outcome and the necessity of therapy are still unknown. A better understanding of the heterogeneity of this disease and the relevance of genotype/phenotype correlations to clinical management of patients are among the challenges remaining in the study of this disorder in the coming years.


REFERENCE: National Center for Biotechnology Information (NCBI) at the U.S. Library of Medicine (NLM)


related links
http://ghr.nlm.nih.gov/condition=isovalericacidemia

Tuesday, February 3, 2009

Emory 'Ask the Geneticist' : An example to the medical system

With the internet well into it's 2nd decade, perhaps a disappointing aspect is how little seems to have been achieved in the health field with regards online community groups of health problems (not just odor problems) and interaction and co-operation with experts. The old pre-internet structure seems to continue, with experts 'telling' those below the 'facts', and sufferers getting help by the 'trickle-down' method, being at the bottom of the food chain. With a problem like metabolic body odor and halitosis, and the reticence of sufferers coming forward anyhow, it is possibly the last health taboo problem on the net, and also still basically unknown by experts who may be generally still communicating with the public in the pre-internet fashion.

There are all sorts of ways this relationship could change (if the experts primary point of existence is to understand and solve problems), and a good example of one way is the Emory Genetics website : Ask the Geneticist. Not only have they put themselves far from the usual comfort zone (i.e. people can ask questions direct for all to see), they also rely on donations to keep it going since the health authorities didn't have the foresight to see how useful such an online tool could be and continue funding it.

This website is an example of how the internet should be. One could argue they may not have answers for each individual case, but at this point in metabolic body odor, it's a learning curve for both sides. At least they will be becoming aware, which is the first step. Also, readers can look on and become aware too. It may also initiate action from the geneticists.

The following 2 examples are to do with body odors, both to do with (possibly) Isovaleric Acidemia, which is commonly known as 'sweaty feet syndrome', because the acid smells of sweaty feet and circulates through the bloodstream then out through the pores. The experts and textbooks would likely say this is either a very serious condition, or some can be mild, and many 'asymptomatic', but my guess is that through questions on this site, it may turn out that 'asymptomatic' actually in reality have problems with just the smell, which makes their life very difficult. The first one is from a possible asymptomatic sufferer

My question is concerning Isovaleric Acidemia. I would like to know if it is possible for an adult to have this condition with minimal symptoms. I was never diagnosed as having this disease as a child but one of the distinctive symptoms of it is very similar to that which I have experienced. From adolescence on up to adulthood I have had a abnormal "sweaty sock" or "sweaty feet" odor (mainly when I sweat), I always thought it was my shoes or feet but that when I realized it was actually coming from my pores...

a 'smelly feet' odor through the skin
The second is especially interesting, because one of the main problems with body odor and halitosis, is that it is still very difficult to get useful testimony from those who suffer from the symptoms most ... those that can smell it! It would be very useful someday for such evidence to be collected, as these are the 'facts'. In this case the teacher seems to be going as far as putting scented candles in the classroom because of the student's odor. The student is probably textbook 'asymptomatic'. And also it shows the impact not just on the sufferer but the whole class. It goes to show how the government would be very wise to initiate research into the problem even if just from an economic viewpoint.
I have a student in my 2nd grade class who has IVA. My question is concerning the unpleasant odor he has because of the IVA. Some days it is bearable, but some days it is almost nauseating. We have 22 students in our class therefore it is pretty close quarters for the students; most days are very unpleasant for them. We have 2 automatic deodorizer dispensers and keep several candles lit all the time and the odor is still pretty bad. My question is---Is there any sort of medication/treatment that can help control this horrible odor?

student with sweaty feet syndrome body odor
So, well done Emory Genetics and lets hope many more institutions look into this type of website relationship.
Emory Genetics 'Ask The Geneticist' website

Monday, February 2, 2009

A summary of the ISBOR Conference 2007

The International Society for Breath Odor Research, founded in 1995, will be holding their bi-annual conference in Dortmund this April 26-30th. The last confernce was in Chicago 2007 and seemed to be well attended. Let's hope society finally takes all forms of halitosis seriously, including metabolic halitosis.

It will be the 1st joint conference along with the International Association for Breath Research. A provisional response suggested the public can attend, but it would need clarified and also it costs around 200 Euros (please check)

Some 12 years ago, the International Society for Breath Odor Research (ISBOR) was founded to gather both scientists and clinicians and to offer them every two years a proper platform during an international congress; this is the 7th such meeting. Over the years, ISBOR has grown and has become the place to be for interested scientists and clinicians...

Summary of 2007 ISBOR meeting by the Current President, John Greenman and the co-founder Daniel Van Steenberghe

Official 2009 Conference Website