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

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

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

(MGH OCD and Related Disorders Program)

Information from the survey

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

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

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

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

Obsessive Compulsive Disorder Clinic and Research Unit

Dear Drs. Wilhelm and Greenberg:

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

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


TOPICS ADDRESSED IN THIS EMAIL ARE THE FOLLOWING:

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

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

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

The only morally and ethically acceptable diagnosis and treatment is one that is based on scientific evidence through diagnostic testing, and there are no tests in the medical system that check for odorous compounds emitted through the skin, breath, or any other cleansing systems of the body, except TMAU only.Frequently, these conditions manifest themselves with an unpredictable intermittent odor, which may not always be present during medical examination, but may appear at the most inopportune moments. For additional information on the experts’ opinion, please see the interviews we have done with them already that are posted in this blog. Without exception, they recognize that sufferers do manifest intermittent body odor.

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

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

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

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

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

Respectfully yours,

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

Trimethylaminuria testing in the USA : Denver Colorado

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

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

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

They require a Doctor to request an order, but it seems TMAU experts are aware the lab is testing and may help to order the test.

Trimethylaminuria urine and blood testing Denver Colorado

TMAU urine (phenotype) test	TMAU blood (DNA/genotype) test
price : $250	price : $600
lab : UCD Biochemical Genetics Laboratory	lab : University of Colorado DNA Diagnostic Laboratory
website : TMAU urine test page	website : TMAU DNA test (#81)
TMAU urine test page	Note : officially they require you to do the urine test first
Test must be ordered by a Dr or a TMAU expert	Test must be ordered by a Dr or a TMAU expert
TMAU urine test requisition form Denver	TMAU DNA test requisition form Denver
contact email :	contact email :

Join us in Nashville : Body Odor and Halitosis Meetup

All are welcome to join us in the

Nashville Body Odor and Halitosis 2010 Meetup.

We have already over 20 people who have booked their rooms for this meetup at the Embassy Suites Airport Hotel, which will take place on Saturday and Sunday, March 20th and 21st. Some are checking into the hotel on Friday and leaving on Monday, and others can only stay less time.

For booking information and other relevant information, see the post label in this blog entitled, "Meetup : USA Nashville."

Booking options:

Special Accounts: Group/Convention Code: MBR

1. ONLINE RESERVATIONS (click here): for the $99/night rates

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

Special Accounts: Group/Convention Code: MBR

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

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

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

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

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

Nashville: Have you booked ?

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

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

María de la Torre

Hello Mystery Diagnosis TMAU viewers

Did you just watch about TMAU
on Mystery Diagnosis ?

Hello everyone who has just watched brave Cheryl Marshall's TMAU story on Mystery Diagnosis. The video was on youtube but has sadly been removed. You may be surprised to find out that you are far from being alone. Welcome to the community. We are a blog about systemic body odors; especially trimethlyaminuria, which many of our readers have. Currently there are very few testers for this disorder, and 99.9% of MD's will be unaware of it. Stay around to learn more about the problem and meet the online body odor community. We are all in the same boat and together we can learn to organize ourselves into a powerful lobbying group to get research into systemic body odors. An ideal goal would be to get the NIH to open an International Body Odor and Halitosis research center and clinic.

In the meantime here is some brief information :

Trimethylaminuria information on our MeBO Research website
ABC Primetime TV video about a TMAU case
Main online TMAU forum

Testing for TMAU :
Normally there were 3 or 4 USA TMAU testers, but currently there is only one known : Arkansas Childrens Hospital

Others associated with TMAU but currently not testing :
HBRI.org
Dr Paul Fennessey at Denver University of Colorado Health Science Center
Monell Chemical Senses Center
McGill University Health Centre - Montreal Children's Hospital

If you have any ideas how we can get society to recognise the commonness of this problem and start research, please let us know. Welcome.

The Nashville Body Odor & Halitosis meetup and webinar to become two separate events

After much looking at the options and cost of having the webinar during our Nashville Body Odor and Halitosis Meetup, it appears that the best option may be to make them into two separate events. There are two main reasons for this decision, and that is because a conference room and equipment would be costly, while it would probably be easier and more comfortable for everyone to participate in the webinar on our own computers. The second reason is because a meetup can be a very life-altering experience at a socio-emotional and spiritual level, and there simply would not be enough time to fit in a webinar in this process when some people can only stay for one day. By doing it separately, we can give our undivided attention to each and perfect each one as much as possible.

If the 2010 International Body Odor and Halitosis Webinar Series is held at a later time, the only expense would be to get a good webinar host program, for which we would need to fundraise. We could present one expert at a time with the whole community from around the world joining the meeting from the comfort of our own homes. This way, there would not be any time restraints and the expert can feel more at ease in the process. Each expert will be asked if they consent to being recorded while doing the presentation, and if so, it will be permanently presented in the MEBO Research website. The webinar format and schedule has yet to be decided but is hoped to be a few webinars in the springtime. So far one has agreed to a webinar for sure, another couple seem very likely to agree to give us a slideshow, and another 4 could be possible guests as well. Hopefully this will establish a rapport between experts and sufferers.

During the meetup as we discuss our conditions, usually many questions arise. I will be making a note of these questions and may present them to our experts before their presentation so they may address them if they choose to do so. Each expert will be asked if they would also like to have a Q & A session after their presentation, and perhaps later in the year a panel of experts could do a Q&A session with the viewers much like was done at the TMAU Workshop in 2002. We will have to see what experts feel comfy with.

New paper from Dr. Preti: from genes to axillae

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

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

Comment on:

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

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

ABCC11 gene and body odor : Abstract on pubmed

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

---

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

FDA Launches Orphan Drug Workshop at KGI : TMAU qualifies as an orphan disease

This February 25-26th sees the first 'Orphan drug workshop' at the Keck Graduate Institute in California. When they say 'orphan' they mean 'rare', and it is likely that trimethylaminuria qualifies under this grouping (though in truth it seems likely to be not rare. At least, when you include 'mild' cases. Odor is something that cannot be a hidden problem, which is probably the case with other 'mild' genetic disorders). It's very unlikely any company/researcher will be proposing a TMAU drug or treatment, although it does seem there could be potential treatments.

Examples of possible trimethylaminuria treatments :
Ataluren for genetic TMAU cases that are caused by nonsense mutations
A probiotic either naturally rich or genetically engineered to contain FMO3
TMA-dipsticks for urine testing monitoring
Stem cell therapy
TMAU dog (such as a guide dog)
etc

The U.S. Food and Drug Administration (FDA) has announced the launch of an orphan drug workshop series-an opportunity for biotechnology companies, pharmaceutical firms, academics and other interested parties to spend two days creating applications for orphan status designation, under the guidance of staff from FDA's Office of Orphan Products Development (OOPD). The first workshop is planned for Feb. 25-26, 2010, hosted by the Center for Rare Disease Therapies at Keck Graduate Institute (KGI) in Claremont, Calif...

http://www.kgi.edu/News-and-Events/FDA-Launches-Orphan-Drug-Workshop-at-KGI.html

Could a dog be trained to detect Trimethylaminuria ?

This is another article demonstrating the ability of dogs to be trained to react to scents. In this one, the dogs are being trained to react to foods that cause severe allergic reactions. It also mentions how dogs can be trained to detect the beginnings of seizures. Apparently the dogs come under the America Disabilities Act. It would seem very likely that one could be trained to notify a patient of a TMAU episode (or to notify on request)

Article on dogs trained to react to odors

mold-dog.com
Bill Whitstine bio
Bailey the mold dog trained by Bill Whitstine
Arson dog trained by Bill Whitstine

Sniffer dogs article

New TMAU Documentary to be made in Australia : Volunteers needed

Rob Brown, founder of Australian Trimethylaminuria Foundation and owner of the forum, has written that a Japanese-Australian TV Production company based in the Goldcoast in Queensland is looking for volunteers for a programme about trimethylaminuria. Anyone wishing to volunteer can contact Rob or presumably Yoichi Minowa at Oceapro.

Just a reminder about the request from OCEAPRO about their interest in making a documentary in Australia about TMAU. They have requested me to ask members if they would be interested in participating and have suggested that they would pay participants. They are particularly interested in interviewing women and kids with the condition.

Before Xmas I told them I would wait until after the holidays to see if I got any response from my earlier message. They emailed me again today so I'm sending out this final announcement just in case anyone wants to do it. I will wait till the end of the week and if no response I'll tell them there is no interest.

Cheers

Rob

http://health.groups.yahoo.com/group/TMAUcure/message/185

OCEAPRO website

Nashville update : Webinar and Conference room provisional plans

NOTE CHANGES, SEE UPDATE POST:
The Nashville Body Odor & Halitosis
meetup to become two separate events

Donations needed for Conference Room and Webinar

This March 2010 sees the inauguration of the online community Body Odor and Halitosis Conference and Webinar to be held in Nashville Embassy Suites Airport Hotel on March 20th and 21st. Originally, it was planned as just a meetup amongst community members, but now it hopes to be both a meetup and a conference, with the conference being in the form of a webinar, so that experts can speak from their homes, and so the online community can watch the presentation videos and communicate in text format from anywhere in the world.

Invitations to TMAU/FMO3 experts have been sent and so far a renown geneticist expert has said he would be happy to help if his schedule permits, and another 2 have said they would be giving a joint lecture on FMO3 genetics and best practice for coping with TMAU. The expert overseeing the MeBO-Biolab Gut Dysbiosis Study has also offered to do a presentation.

Conference room arrangements :
Pending the numbers who will attend this Nashville Webinar, it has not yet been decided if the meetings will be held in the Governors Suite, or whether one of the larger hotel conference rooms may be needed. The cost of a any of these rooms may cost from $150 to $500 a day depending on the room size. This will be determined later once the number of attendees is more accurately established. Whether to book a conference room for 2 days is also still to be decided, depending on factors such as whether the attendees wish 2 days, cost, and the potential numbers of speakers. At the moment we are proceeding as if the webinar will last one and a half or two days. After all, it was initially intended to be a meetup to promote camaraderie and support, and for attendees to also have the opportunity to have fun together.

Capacity sizes of the conference rooms

Webinar arrangements :
The webinar format will allow experts who cannot attend to speak from their homes via a webcam and microphone (via a TV or monitor) to the attendees in the conference room and to those online to also watch in their own computers. One popular body odor & halitosis phone-conference in the US had around 80 callers about a year ago; therefore, the webinar arrangements will be based on the possibility of over 100 watching via the internet. Nonetheless, to ensure no-one is left out, it will probably be based on 500 watching or even more.

Meanwhile the group in Nashville will be watching from the conference room and will be able to ask questions to the speaker during the Q&A session after each presentation. Those on the internet will provisionally communicate their questions and comments via text chat or email.

We have yet to find the program we will need to do this, but it will probably cost us between $50-$100 (or more) for the shortest subscription (one month). The viewers will be able to watch for free, though donations will be accepted. One candidate program is dimdim webinar but it has not yet been determined as other possibilities will be explored. Dimdim uses flashplayer and can be watched without the need to download anything. We will probably do a trial run of a webinar in late February/early March so that anyone interested may join to get the hang of it. It's hoped the Nashville 2010 webinar will encourage future webinars.

Things we think we will need for the conference room :

• A table (to put the TV/Monitor on)
• A wireless mic (so the host and those in the room can speak to the speakers)
• Possibly sound speakers
• A TV (if it has a computer monitor socket) or monitor
• A laptop (probably 2)

Webinar program basic needs :

• 500-1000 viewer capacity
• 3,4, or 5 cameras and mics enabled (maybe 2 minimum)
• Can record video (with speakers permission. Any permitted video would be freely available on the blog and MeBO website. No sufferer wouild appear wihtout permission)
  

Donations :

For the above objective to come to fruition, it was suggested that anyone interested may donate to a ring fence 'Webinar Fund'. The proceeds of this Fund will be used exclusively for the rooms used specifically for the conference and the technical equipment used.

The easiest way to donate is to go to your paypal account and send money as a 'gift' to :

webinar@meboresearch.com (send as a gift)

Other donation avenues may also be used; and to do so, you may contact María at, maria@meboresearch.com to make those arrangements.

NORD rare diseases database conference 11-12th January

Tomorrow the Office of Rare Diseases will be hosting a workshop about configuring a federated rare disease patient registry internet database. The conference will last 2 days.

ORD 11-12 January Patients Registeries Workshop

Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data

TMAU urine test available direct in the UK for £191 : Mullhaven Medical Laboratory

TMAU urine test in the UK
Available free on the NHS

Now available direct by mail from Mullhaven Medical Laboratory for £191

One of MeBO's aims is to make the Trimethylaminuria tests more widely available and accessible. In the UK, we have managed to get the TMAU urine test put in the catalogue of The Doctors Laboratory lab (but a referral is necessary), and Medichecks (direct, but they charge £275). The only TMAU urine tester in the UK is Nigel Manning at Sheffield Childrens Hospital, but a referral is needed. All the above labs source the test from the Sheffield lab. The Sheffield Lab allows private Drs to test for approximately £136.

MeBO is pleased to announce that a lab in Bedford, England, Mullhaven Medical Laboratory, www.mullhaven.co.uk, has kindly agreed to let anyone do the Sheffield TMAU urine test direct by mail, so no need for a doctor's referral, for £191 (which is a lot cheaper than Medichecks'). This is ideal for anyone who just wants to do the urine test at home without a doctor's referral.

The lab has already put the test on their website list, and you can place your order online. (click on the letter 'T' for the TMAU (Trimethylaminuria - Fish Odour Syndrome) test.

Always remember that the TMAU urine test is free on the NHS.

Comment on Tester 5's results : MeBO-Biolab gut dysbiosis study

Tester 5 in the MeBO-Biolab body odor and halitosis gut dysbiosis study was our 'thorough tester'; and although the basic organic acids test result is not in, the other tests make interesting reading.

...a striking result was that Vitamin B2 level seemed to be quite deficient. This is the co-vitamin needed for proper FMO3 function...In the panel of 4 tests, tester 5 was similar to a couple of other testers in that their ethanol production in the Gut Fermentation Profile was much higher than normal. Like tester 2, who also had gut complaints, the ethanol result was very high (5th tester was 134, tester 2 was 140). Normal is less than 22. Tester 3 had an ethanol reading of 66. The Gut Permeability Profile scores of tester 5 were within range, although the curve seems to be tending towards hyper-permeability as the molecule size increases (tester 2,3 & 4 all had hyper-permeability).

Indicans and D-lactate were normal (Indicans was positive for tester 3 and D-lactate was high for tester 2). Indicans is thought to be a general sign of 'putrefactive bacterial growth (feeding off protein). D-lactate is produced by lactic acid. The d-lactate result seems to indicate that tester 5 should tolerate lactic-acid bacteria ok (on paper).

In the other tests, a striking result was that Vitamin B2 level seemed to be quite deficient. This is the co-vitamin needed for proper FMO3 function, which is the enzyme that deals with many smelly substrates including trimethylamine.

The Hair Mineral Analysis test probably cannot be deemed as a very sensitive test of minerals, but perhaps is good as indicator of possible abnormalities to investigate. In this case zinc was quite low, and magnesium borderline low. Interestingly, almost all the 'good' minerals seemed borderline low apart from calcium. The 'toxic' minerals were all within normal range.

The Small Intestine Bacterial Overgrowth test was fine. This detects any bacteria that is producing hydrogen or methane in the small intestine. Serum Glutathione-s-Transferase was normal. This is one of the '6' phase2 detoxification enzymes that detox substrates by joining the substrate (in this case glutathione). The Amino Acids Profile is still to be interpreted, although the only 'glaring' abnormality looks to be very low Taurine.

So we still have no conclusive answers but hopefully someday a definite pattern will emerge. Gut dysbiosis is only one factor worth exploring, and even the tests chosen do not cover that area fully (for instance, parasites). There should be another 2 testers results over the next month.

An idea was to later go for a 'TMAU' orientated panel of tests, which would provisionally include TMAU test, choline, and B2; but with tester 5's B2 level being so low and it being so associated with FMO3 function, it is thought perhaps B2 should be added as an option to the gut-dysbiosis panel, since it is only £21 at full price.

Thanks again to everyone that has tested and let's hope a pattern emerges that may be significant in the problem of systemic body odor and halitosis. Anyone wishing to do the panel can fill out the survey (You need only give your name to Biolab, in emails to them)

MeBO-Biolab 4 panel gut dysbiosis test form

MeBO-Biolab gut dysbiosis study : Tester 5 results (the more thorough case study)

Note : This post will be updated over the next week

The following is Tester 5 results in the MeBO-Biolab gut dysbiosis study. This was the 'more thorough' case study, using more tests available from Biolab but keeping within a certain budget. It is by no means the full range of tests that would be needed for the definitive case study. The tests were paid for partly by the tester (£318) and partly by MeBO Research (£125), with Biolab kindly giving a substantial discount. Once again, thank you to the testers for making this study possible by paying their own tests.

This is a brief overview of the results for speed. The post will be updated over the next week.

Anyone wishing to do the 4-panel group of tests can do so by filling out the MeBO survey and then we will arrange the testing for you. It will cost £151 for the 4-panel test (some Biolab prices went up for 2010).

	Tester 5
Female	Early 40s
Odor problem:	Systemic halitosis : Various smells like gas or gas leak. Also fecal, rotten eggs, something died or gone off, smoke/burning, sewage. Problem over 10 years getting gradually worse
Gut problems	Bloating, Gas, IBS like symptoms (undiagnosed)
Other problems	Chronic Fatigue Syndrome (CFS), Digestive conditions/disorders, Thrush, Chemical and environmental sensitivities, Headaches
Trimethylaminuria	Tested negative
Results :	Tester 5
Gut Fermentation	Ethanol raised (134, normal less than 22)Indicative of yeast overgrowth 1-propanol raised (2.3, normal less than .5)
Gut permeability	Normal but tending towards increased permeability for larger molecules
Indicans	Negative
D-lactate	4 (normal is below 60)
	Other results for tester 5 only
Serum Glutathione-S-Transferase	Normal
Hair mineral analysis	Magnesium slightly low Zinc quite low
Small intestine Bacteria overgrowth test	Normal
B1, B2 and B6 status	B2 deficient (1.81, normal is under 1.2) Note : B2 is necessary for proper FMO3 function
Amino Acids	To be interpreted. Some 'metabolic' amino acids look out of range
Basic organic acids test	Seem normal

Video about Geoffrey Speiser's Bad Breath clinic in Australia

In this video, 2 people visit one of Dentist Geoffrey Speiser's Bad Breath Clinics (this one in Australia). Dr Speiser prefers to use the Halimeter rather than the Oral Chroma. Dr Speiser seems associated with the brands/names :
Breezecare
Bad Breath Clinics

It is unlikely that systemic halitosis will be looked for as a diagnosis at one of these clinics, since systmeic halitosis is not a recognised problem by most dentists. At the moment even amongst bad breath clinical specialists the problem will be mostly seen as a 'localised' one.

The video is from Dr Speiser's youtube channel
http://www.youtube.com/user/drfreshbreath