Managing bad breath

Some of the people who attended the London Meet-up at the Thames Festival this year suffer from halitosis, and were very interested in getting as much information about it as possible. It is for them and all other BB sufferers that this post is created. This posts is a summary of all the information I have found in this blog and in the Body Odor Support Forum on bad breath management.

After the dentist has checked our gums and teeth, and the ENT has given us the green light stating that there are no underlying oral or nasal problems that produces BB, then we ‘enter the real BO world’ of ambiguity. All we have are theories not yet extensively tested, and management protocols based on trial an error. I will try to give the links to the sources of the various theories.

...with the exception of gum disease, the causes of halitosis come from a metabolic pathway, a gut dysbiosis, tongue plaque, and/or anaerobic bacteria.FIRST, Our expert, Arun Nagrath, the owner of the Body Odor Support Forum who organized this and many other meet-ups and has been posting in the boards for years, has personally suffered from generalized BO including breath issues. He has written some posts about it, and here are some of the links.

‘Question for Arun regarding odorous bacteria in mouth’. In this link, Arun discusses anaerobic bacteria (bacteria that live without oxygen) that grows in the back of the tongue. He talks about the limited, short-term effects of the most commonly used antibiotic for this bacteria, and he also discusses the white odorous coating on the tongue. Arun mentions how different our symptoms might be from one another, but yet he believes that it may be coming from a common metabolic pathway which is defective. He believes that with the exception of gum disease, the causes of halitosis come from a metabolic pathway, a gut dysbiosis, tongue plaque, and/or anaerobic bacteria. This is a very interesting read.

‘The role of the dorsal tongue, scraping, and bad breath’. This very interesting post in my blog discusses three studies carried out from 1992 through 1997 on the source of volatile sulphur compounds (VSC) production and tongue coating, published in The Journal of Contemporary Dental Practices. The post talks about the benefits of using acidic remedies before bedtime on the tongue after scraping like drops of lemon juice or distilled white vinegar or white apple cider vinegar, ‘The benefits of apple cider vinegar’ , and even applying vitamin C (stearic acid)directly on the tongue. There is some discussion on gargling with hydrogen peroxide after scraping the tongue. Also, see Arun’s opinion on tongue scraping, ‘What do you use to freshen your breath?’ This might explain why when you feel dehydrated and your mouth dries up too much, your odor increases.

‘From Bangkok with love!’ On this thread in the Body Odor Support Forum, Arun tells us of his experiences in Asia this past winter where he hired some people to give him feedback on his odor. He documents the feedback he got regarding his breath odor and generalized BO.

‘Effects of different mouth rinses on third molar surgery-related oral malodor’.

‘Tonsil stones / Tonsilloliths’ This is a very interesting thread on tonsil stones. It makes references to a video that shows what tonsil stones are. These are produced by the food we eat that get stuck in the crevices formed in our tonsils as a result of previous infections, and these stones made of food particles are great for breeding odorous bacteria. This is different from food particles going up toward the sinuses area and then coming back down again with the post nasal drip. The tonsil stones stay embedded in the crevices much longer than the food that goes up the back part of the through (from where the post nasal drip comes from) when we swallow.

‘Kill that nasty bacteria in the back of your tongue!’ This post talks about post nasal drip contributing to BB, the pH balance being off, as well as small particles of food sticking to the back of the tongue as we eat, contributing to a microbial imbalance with possible overgrowth of odor-producing anaerobic bacteria in the dorsal tongue. This post also discusses the benefits of tongue scraping and the use of neti pot with salt and baking soda, Neti pot for nasal irrigation or ‘Nasopure nasal irrigator’ to clear out the toxins that have accumulated in the thick mucus lining, and the salt promotes further nasal drainage (post nasal drip) for a thorough cleansing of the back of the throat and dorsal tongue. See the video for proper nasal irrigation technique. Do not pour a stream of water up your nose especially with the head tilted back, but rather let it drain out the other nostril. It is OK to allow a 'mist' or small drops to go up through the sinuses by breathing through the nose (after the water has drained through the other nostril) with the head in its normal position to cause a post-nasal drip down the back of the throat.

SECOND, We have over of 28 posts in my blog addressing halitosis discussing many scientific papers written on this subject.

‘Oral manifestations in patients with GERD’

THIRD, what my son has done to control his breath odor:

1. http://www.exit15.com/tongue-sweeper-pro-p-595.html Scrapes his tongue with a stainless steel tongue scraper. A stainless steel one is better than a plastic one because it doesn’t stain and is much more effectively sterilized with boiling water.
2. ‘Let the bacteria fight our wars’. After scraping for months, the white coating diminished and his tongue became pinkish, and his odor was almost completely gone, but not totally. So he used therapeutic dose of probiotics to let the ‘good’ bacteria fight off the ‘bad’ odor-producing bacteria by overwhelming it without the use of antibiotics. Basically, what he did at bedtime after the neti pot rinse (which he did only a few times a week – not daily) he would brush his teeth and tongue as far back as possible, scrape his tongue, and take a mouthful of the VSL#3 probiotics and keep it in his mouth when going to bed. He would keep it in his mouth as long as possible, and swallow small amounts of it very slowly. Since he didn’t like the taste or after-taste of it, he did it every other day for 20 days (or only 10 times). I believe this treatment is what finally took away his BB completely. However, if he stops scraping at least once a day, the white odorous coating begins to form again.

María

2006 paper : FMO3 'in action'

FMO3 is always of great interest to the blog, since it is one of the group of 'xenobiotic metabolizing enzymes' that deal with both external (xenobiotic) and internal compounds, either to neutralize for excretion or to 'activate' if needed in the main circulation. All the xenobiotic metabolizing enzymes are suspects in metabolic body odor, but FMO3 in particular since it is known to cause trimethylaminuria and also deals with 1,000s of smelly sulfide, amine and phosporous containing compounds.

In this 2006 paper, it looks as if this was the first time that FMO3 was finally 'seen in action' (i.e. it is finally demonstrated how it oxidizes a compound ... the reaction). Most readers know that the enzyme is dependent on vitamin B2 (riboflavin, as part of the FAD), but this paper explains in depth that it is also dependent on NADPH which itself uses niacin (vitamin B3) as a cofactor. This does not mean that niacin is likely to be of any benefit, and niacin itself can cause quite an undesirable symptom when taken as a supplement (the niacin flush, as well as a feeling of unease). There has been mention of cases where the FMO3 enzyme 'failure' is at the NADPH stage, but for the moment it is not known if this is of any significance.

Full paper 2006 : Mechanism of action of a flavin-containing monooxygenase

Interesting quotes from the paper :

Elimination of nonnutritional and insoluble compounds is a critical task for any living organism. Flavin-containing monooxygenases (FMOs) attach an oxygen atom to the insoluble nucleophilic compounds to increase solubility and thereby increase excretion...

... Flavin-containing monooxygenases (FMOs) and cytochromes P450 are two important microsomal (i.e. liver) proteins involved in the process of nonnutritional foreign compounds metabolism known as xenobiotics. Their main function is to add molecular oxygen to lipophilic compounds, making them soluble to ensure rapid excretion. FMOs oxygenate nucleophilic O, N, S, and Se atoms of a wide range of substrates, such as amines, amides, thiols, and sulfides...

...The mammalian FMO gene family contains five similar genes (FMO1 through FMO5). FMO1 and FMO3 are prominent isoforms expressed mainly in liver microsomes and in other tissues. FMO1 expression is higher in fetal liver, whereas FMO3 is more abundant in adult human. FMO2 is expressed in the lungs of nonhuman primates; FMO4 and FMO5 represent scarce isoforms (5, 6). Individuals with defective FMOs exhibit “fish odor syndrome” caused by excretion of trimethylamine instead of its oxygenated form, trimethylamine N-oxide in urine, sweat, and breath...

...Cytochrome P450s contain heme as a prosthetic group, whereas FMOs use FAD. These proteins need a cofactor NADPH in addition to the prosthetic group to accomplish their functional goal...

Scientists at the U.S. Department of Energy's Brookhaven National Laboratory, the New York Structural Biology Center, and SGX Pharmaceuticals, Inc., have determined the atomic crystal structure and functional mechanism of an enzyme essential for eliminating unwanted, non-nutritional compounds such as drugs, industrial chemicals, and toxic compounds from the body...

..."For FMOs, the end result -- that an oxygen atom gets added to make these compounds soluble -- is simple," Swaminathan says...

...People with defective FMOs might also suffer additional side effects from drugs, industrial compounds, or other chemicals.

http://www.physorg.com/news69420825.html

tmau.org.co.uk interview with Dr Robin Lachmann

Once again the tmau.org.uk website has come up with a notable exclusive in body odor and halitosis world. A while ago they said they would be interviewing Dr Robin Lachmann of the Adult Metabolism Unit in London and asked for readers to put questions to him. The interview has now been done and the result can be seen on the tmau.org.uk website.

tmau.org.uk interview with Dr Robin Lachmann about trimethylaminuria

The tmau.org.uk site is also in the process of getting together some tmau-diet meal plans which it will publish in the future. Thanks again tmau.org.uk and Dr Lachmann.

British TV programme looking for potential TMAU tester

The new UK trimethylaminuria website, tmau.org.uk , has been contacted yet again about a media opportunity for a volunteer in the UK. The owner writes on this page on the tmau.org.uk website ...

Channel 4 to feature TMAU

Channel 4 to feature TMAU.
WE NEED YOU to volunteer

I have been contacted by a TV producer who wants to feature Trimethylaminuria.

Please give it serious consideration, it would be a fantastic opportunity to highlight our cause.

Here's the email from Vicki Cooper, v.cooper@mavericktv.co.uk This e-mail address is being protected from spambots. You need JavaScript enabled to view it

I'm a producer working on the new series of 'Embarrassing Bodie's for Channel 4.

Whilst I realise the title is of the series is attention grabbing, the show offers fantastic health advice and myth dispelling about things people would rather not discuss. If you haven't seen 'Embarrassing Bodies', you can watch some recent episodes on 4OD - http://www.channel4.com/programmes/embarrassing-bodies/4od and take a look at the BAFTA award winning website here http://www.channel4embarrassingillnesses.com/

We are really keen to find a TMAU case study for the new series. I am aware of the social stigma associated with TMAU - the aim of featuring a case study on Embarrassing Bodies would be to expose the myths around it and also de-stimgmatise the condition. From what I have read, there could be a lot of other people hiding themselves away unaware that they have a medical condition and many Doctors don't even recognise it.

We are ideally looking for someone who is undiagnosed or has only just discovered the condition and isn't on a treatment plan yet, so we can refer them to a specialist and follow their journey/improvement.

Best wishes, Vicki

Vicki is very approachable and will talk through any concerns or questions you have without any commitment to doing anything.

Dr Lachmann is 'on board' as well.

Please email Vicki at v.cooper@mavericktv.co.uk This e-mail address is being protected from spambots. You need JavaScript enabled to view it , please mention this website (tmau.org.uk) when contacting Vicki.

You can also use the contact form on the website if you prefer and I will forward your messages on.

Embarrassing bodies has been running for a few series on channel 4 (one of the main free to air channels in the UK). Usually the cases take on the structure of someone going to the shows 'Dr' with an undiagnosed problem, who then refers them to an expert, and then the story ends happily (in this case, presumably with a diagnosis of TMAU and advice on the TMAU protocol). Normally each case gets around 5 minutes airtime (?).

Good luck to any brave volunteers. Your place in the group hall of fame is guaranteed !

Action plan : TMAU group planning to group-email Dr Oz and/or the Doctors TV Show

Currently on the yahoo TMAU forum , they are talking of mass emailing one or two 'TV doctors' about TMAU or metabolic body odors in general.

No doubt they will soon come up with an agreed co-ordinated plan, and are demonstrating the possibilities the internet provides for such a health problem and the power of the people. Group campaigning could be a very potent force.

goals : trimethylamine sensors for home body odor and halitosis checks

One aim of MeBO Research and probably amongst the body odor and halitosis community in general is for the best and easiest ways of diagnosis of whatever their problem is. In the case of TMAU, this currently means using the very few labs that test for TMAU.

There are 2 aspects to testing: 1 is the 'gold standard' tests, that will presumably always be done in labs. The other is 'monitoring' testing, which could probably be done in the home. This would be like the 'digital blood pressure checkers' people can nowadays buy very cheaply.

For monitoring TMAU, the product would likely be based on monitoring trimethylamine levels in the urine (perhaps in the breath ?). This would seem to be likely done in either 2 ways :
1 : test strip paper (such as ph paper or diabetes dipstick paper)
2 : electronic sensors such as used in breathalyzers

Amazingly, both such types of TMA monitoring already exist, primarily designed for the fish industry. The TMA test paper idea seemed to be patented a few years ago in Canada but no product was brought to market due to lack of interest.

Probably one major problem is that these companies do not realise there would likely be a bigger than expected 'medical' market for such devices, thinking TMAu to be very rare.

MeBO Research hopes to encourage such devices, although with such a problem the the old adage seems very appropriate : it doesn't matter where the leads/answers come from.

The following 2 papers are about electronic sensors for TMA. It's not known what has become of these ideas, but it would be very useful if such a sensitive digital checker could be bought for under $50.

France 2009 : Trimethylamine biosensor based on pentacene enzymatic organic field effect transistor

Japan 2004 : Trimethylamine biosensor with flavin-containing monooxygenase type 3 (FMO3) for fish-freshness analysis

Our anthology is accepted by a publisher

PublishAmerica.com has offered to publish our anthology. Richard tells us of this great news in a post in the Body Odor Support forum.

Hey Everybody!

I just received a call from PublishAmerica.com that our anthology will be published! We don't have to pay a cent. They will pay US! The proceeds will go to research for better medical treatment for our condition and a cure. Congratulations to all who participated and to everyone else in the world who is just like us. People will know us now!

They will email me the contract to look over today (Sept. 22) or tomorrow. I will eventually post the entire contract for everyone to see. THIS IS A GREAT DAY for us!

Rich

The proceeds will go to research for better medical treatment for our condition and a cure.Thanks Richard for a job well done. None of this could have been done without all your extremely hard work and dedication. The whole community should feel VERY PROUD to have created such a masterful expression of life with our condition. As the saying goes, "When you get lemons, make lemonade".

I do believe that this is the first time that the BO community comes together to raise social awareness of our condition in such a beautiful literary work. The majority of the authors have been in 'hiding' and living in 'shame' but we came out in a very beautiful way to tell the world our story. We are talented people, sensitive people, BEAUTIFUL PEOPLE!!! And I'm proud to be a part of this!

Now, we can all cash in on it to raise funds for testing and research. What a wonderful reward - to promote our cause, to search for treatment and a cure in addition to raising social awareness. I do want to bring research to the US as well as in the UK, and this will help us accomplish it.

Thank you, thank you, thank you, Richard. God bless you abundantly!

María

NORD TMAU fund update (target : $35000)

Cheryl Marshall, founder of the the NORD TMAU research fund, posted an update in the yahoo TMAU forum recently.

Hello everyone

Our September Nord Fund total is a grand total of.......... $ 6, 350.00

THANK YOU TO ALL WHO HAVE CONTRIBUTED AND WE URGE EVERYONE TO CONTINUE TO GIVE WHAT THEY ARE ABLE TO. PLEASE CONTINUE TO TALK TO FAMILY AND FRIENDS AS EVERY DOLLAR ADDS UP.

NORD is a registered charity. Once the TMAU fund reaches $35,000 they will put out requests for research. In the last update about 3 months ago, the total was $3830
For more details contact Cheryl at cher850@yahoo.com

Note : please make sure any donations to NORD go to the TMAU fund specifically

---

More about the NORD TMAU fund and Cheryl Marshall :
Kristens facebook page on the NORD TMAU fund (can donate online and follow progress)
NORD Trimethylaminuria page
Cheryl Marshall in Mystery Diagnosis Trimethylaminuria episode
Cheryl Marshall story on NORDs website

Body odor & halitosis conference call on Sunday topics : London meetup and Arun's forthcoming database

You are invited to join Arun (owner of bodyodorsupport.com) and all the other friendly people on the fortnightly conference phone call tomorrow at 2pm EST.

It will be a chance to hear about the London meetup last week, which saw 20 people attend. It may inspire similar meetups elsewhere. This may be Aruns last call for a while, since he will be working away from his local area for a while.

It is an opportunity for body odor and halitosis sufferers around the world to hear the voices of fellow sufferers, and to share ideas and take comfort.

Arun will no doubt be talking about his new database he is working on, which he sees as a way of providing strong evidence of the amount and types of body odor and halitosis, as well as providing clues in itself. Arun is setting up the database at his own expense. This could be the start of the journey to research and recognition by the medical system.

The conference is USA based, but anyone can phone in. If you are overseas, there are ways of making cheap international calls, such as using 'prefix number' phone companies, even if you are with your national phone company. Calls from UK to USA can be done for around 0.5p a minute if you look around.
http://callchecker.moneysavingexpert.com/intcallchecker/usa

Arun is also looking for other ways to host the conference calls, such as on skype or yahoo chat. If anyone knows of an internet way to the conference calls free, Arun would be delighted to hear, so that callers around the globe can join the family discussion. Skype's website says only 6 can attend a conference at one time, but others have said they have attended such calls with more present. If anyone has any tech knowledge, they could contact Arun about it by any means (e.g. on the call, by email etc).

Anyone can phone up and just listen in. You do not need to talk or introduce yourself. When you phone-in, there is a tone the others hear to let them know someone has joined, but you can stay silent.

Topics discussed in the London body odor and halitosis meet-up: Research strategies

Many discussions regarding BO conditions took place in our annual Meet-Up at the Thames Festival, and I would like to share these with those who did not have the opportunity to attend. This particular post deals more with the research needs of our community. Some of the attendees are professionals while others are not, but all are sufferers who have put forth a keen effort at many levels through the years to try to make sense of our conditions.

...it would be helpful to address our condition...through an intensive analysis of the genetic pathways involving FMO3 and other metabolic enzymes, through analysis of the compounds found in our blood, and then analyze the processes involved that link them to each other...‘think out of the box’...As mentioned in my previous post, it is remarkable how many of us seem to have other similar medical conditions ranging from digestive problems, such as chronic abdominal bloating and irregular bowels, to skin problems, such as dermatitis, rashes, psoriasis, and eczema, while a significant amount of us also suffer from allergies, chemical sensitivities, autoimmune diseases including rheumatoid arthritis and lupus, and neurological conditions such as epilepsy ourselves or in our families.

We all found it to be very interesting that not everyone benefit from the same protocol, particularly the same diet. Some of us benefit tremendously by a low choline diet, while others are able to eat more choline as long as the diet would be generally low in protein. Others benefit from a low dairy diet, and still others from a low sugar/carb diet. And unfortunately, a few have to be in more than one of these diets, making their situation even more difficult.
This is the way our discussions went:

Once the compounds and genetic pathways are classified and linked, it is through this ‘link’ that we would best be able to determine what constitutes the various types of body odor...

As one of the members puts it, it would be helpful to address our condition from two main ‘focal points’, through an intensive analysis of the genetic pathways involving FMO3 and other metabolic enzymes, through analysis of the compounds found in our blood, and then analyze the processes involved that link them to each other. It is important to ‘think out of the box’ in these studies, because perhaps we may very well still be ‘missing it’ and have not yet fully identified the full picture of most of the different body odor conditions.

What are the logistic obstacles involved that prevent us from achieving this? Financial and even technological restrictions are the culprits. As Arun points out, we would need such a highly sophisticated and sensitive instrument that could detect, identify, and quantitatively measure the smallest compounds in our blood that could in theory be producing odor.

The reason emphasis is placed on the technique of analyzing the blood over urine, sweat, or breath, is to preserve the state of the compounds before they pass (or are filtered through or contaminated by) the sweat in the skin or through the breath’s exposure to higher oxygen or CO2 levels, which may potentially alter it in some way.

Once the serum compounds and genetic pathways are classified and linked, we would be best able to determine why some sufferers seem to manifest skin problems, allergies and chemical sensitivities, digestive problems, etc. It is through this 'link process' that we would be better able to determine what constitutes the various types of body odor, better identifying exactly what enzymes (as well as possibly other factors) are involved, and see what other secondary illnesses or conditions may be associated with the various pathways mutations. Somewhere in that link between the genetics and blood composition may lie the answer.

In order to carry out this research, we would just need a scientist who is interested in developing this type of very highly sensitive instrument, a geneticist who is interested in this field, and a benefactor who would be interested in supporting this effort for compassionate and lucrative reasons.

Arun talks about the London Body odor and halitosis weekend meetup

Arun Nagrath, the founder and owner of bodyodorsupport.com, arranged the highly successful London Body Odor and Halitosis meetup this past weekend. It has come a long way since he set up the first such weekend (based around the annual Thames Festival) 5 years ago. Here is a video of Arun on the 2nd day of the meetup, with the following text being what Arun wrote about it on the bodyodorsupport.com forum

Hi guys,
As some of you know, we had our Annual UK Meetup here in London last weekend.

On Saturday, there were 20 members present and we met up at 12pm outside the Tower Hotel, next to Tower Bridge, London. The weather was surprisingly very sunny as we chatted under the umbrellas outside and had our drinks/ light snacks. We recalled our experiences, discussed what tests we had done and shared tips on what had helped us. Around 4pm we all walked across the bridge and sat down on the grassy area on the other side. Here we listened to the sound festival as we tucked into some of the international food from the stalls. We then headed over to Brown's Bar / Restaurant in Butler's Wharf where we sat until late and had drinks under the canopy. I left around 10.30pm but a few of us then walked along the embankment and started to party until as late as 6am!

On Sunday, we again met outside the Guoman Tower Hotel and had our drinks/ light snacks. We then walked the short distance across the Marina to Dicken's Inn Bar/ Restaurant. We had a hearty meal and a drink there then walked back to the Tower Hotel. It was 5pm and the indoor bar upstairs had just opened. We sat inside and marvelled at the view as the bar had panoramic views of the river Thames and we could see Tower Bridge open to let the tall boats come through. At 10pm, a few of us came outside to watch the fireworks which were launched from a barge moored on the river. We exchanged contact details and hugged each other goodbye. It had been a magnificent event, with members also coming from America, Norway Spain and Scotland.

I am hoping members who attended will be amongst the first to enter their details (tests/ diets/ products tried and their effect) in our Database/ Survey which I will be posting on all the Group sites VERY SOON. I will be posting the questionnaire to get your feedback on it to decide what further questions we need to ask in the Survey. Last year we had nearly 100 members enter their details in the survey! The new (final) survey is designed for more detail and will be freely accessible to scientists, medics and us all. It will be used to produce a treatment protocol for every type of odour condition.
Arun

Sunday: the final day at the London Meet-up

Hi everyone,

We had another great day at the meetup today.

Some of us passed the Tate Modern museum forecourt and saw the fire garden at sunset, and others of the group had been partying back at the Hilton Hotel until dawn.

We met at the Guoman hotel first, and then had lunch at the Dickens Inn in St. Katharine Docks. There were about 14 people there today, some from yesterday, and some new ; which makes it about 20 people attended over the weekend. The weather was slightly cold, and so we chose to go up to the lounge in the Guoman Hotel, overlooking the River Thames.

Since we were the first there, we were able to sit by the window overlooking the river and the Tower Bridge, and there we had interesting conversations about systemic body odor and halitosis conditions. It was remarkable how many of us seemed to have other similar medical conditions, ranging from digestive problems to skin problems such as dermatitis and eczema. Some in the group had other similar conditions such as allergies, chemical sensitivities, and rheumatoid condition themselves or in their families.

The meetup was once again an enriching and fulfilling experience, and we are so fortunate that it is part of the UK body odor and halitosis calendar.

More info to come when I return to the US.

Maria

Saturday at the Body Odor & Halitosis Meet-Up at Thames Festival 2009

Meeting so many wonderful people in today's Meet-Up at the Thames Festival was indeed a very special event. There were 15 of us, some from Scotland, Nothern England, London, Norway, and USA. A few of us had attended former meet-ups, but for the majority, this was a first-time experience. It never ceases to amaze me that no matter from what country we may come from, we share the same physical and emotional conditions, and social situations. We have all learned from each other and feel so rewarded when all has been said and done. Many live in close proximity to each other, and very special bonds seemed to have been made in just one day.

Many of us realized and appreciate the potetial each of us have to reach out to each other and offer very valuable and much needed support. Posting in the boards brings us together, talking on the conference calls or chat lines brings us closer, but meeting each other creates a bond that may never exist in other social occasions.

Tomorrow will be the next and last day of our meet-up. We will meet at the same place at 12:00 noon, and plan to leave around 3:00p.m. to take a cruise on the Thames. Please do join us, especially if you were unable to attend today.

I hope you enjoy the pictures and videos I've taken of the event. I took so many that I will be posting them slowly but surely during the following weeks ahead.

Thinking of all of you, and hoping you were here!

Maria

Friday in London : Body odor and halitosis Meetup tomorrow

Upon our approach to Heathrow Airport in London we woke up as the sun was rising in the horizon. We had left the Ft. Lauderdale International Airport at 7:00a.m. and arrived 20 hours later after having a long stopover in New York City. We united with four other fellow meet-up attendees and shared some time together at Starbucks. The cool breeze refreshed our energies with the enthusiasm that surrounded us with workers putting up tents, and sailors dressed in period costumes preparing their vessels for the River's celebrations, and we took it all in we sat at the Dickens Inn Restaurant/Bar sharing this special moment with each other.

Tomorrow is the first day, and more people are expected for our meet-up from more countries than ever before!

Maria

Update on MeBO-Biolab gut dysbiosis Study on the eve of the 2009 London Body odor and halitosis meet-up

The London meetup begins tomorrow (Saturday), in the same week that the first person has done the 4 tests for the MeBO-Biolab gut dysbiosis study. Coincidentally, Biolab Medical Unit is also in Central London, where the meetup is taking place (Thames Festival). We are grateful to Biolab Medical Unit for agreeing to co-operate with us in this study that hopes to act as a template to online communities of health problems ... and also to the volunteers, who are paying out of their own pockets for the tests. Currently 5 have shown an interest.

The tests chosen (indicans urine test, d-lactate blood test, gut permeability test, and gut fermentation test) all have to do with potential aspects of gut dysbiosis, which many feel may be a factor in their fecal/gas or other types of systemic body odor or halitosis. The indicans test is a test for an indigo chemical produced by overgrowth of bacteria feeding off the amino acid tryptophan. It is thought to perhaps suggest overgrowth of protein-eating bacteria. The d-lactate test is a test for d-lactic acidosis. D-lactate is produced by lactic acid bacteria, normally a beneficial type of bacteria (such as lactobacillus acidophilus), but too much can produce d-lactate acidosis. Recently a chronic fatigue expert suggested this may be a cause of chronic fatigue syndrome. The gut fermentation test tests for a number of alcohols and fatty acids that are regarded as metabolites of bacteria or fungal fermentation in the small intestine. In the case of fungal metabolites, it tests for ethanol, which is thought to only be produced by yeast fermentation of sugars in humans. Biolab's test is regarded by many as the 'gold standard' fungal dysbiosis test. It also tests for other alcohols associated with bacterial fermentation, and fatty acids normally produced by good bacteria. The gut permeability test tests current gut absorption function, and also for 'leaky gut'. It is hoped from the results of these tests, that we can perhaps conclude at least whether those with fecal body odor and/or halitosis seem to mostly/always have leaky gut in particular, and also whether fungal dysbiosis in particular is a common issue. It must be remembered if both are implicated, that those who 'smell' are only a small subset of the people who have fungal dysbiosis or leaky gut.

There is also a possibility that someone may do a more thorough Biolab profile of tests, with MeBO paying some of the costs. However, as good as this profile would be, it should not be seen as the 'final word' on defining metabolic body odor, since Biolab only do a limted range of tests. Also, the profile would be very speculative, since it is not known what exactly to look for at this stage, and currently only areas of testing can be guessed at (such as B vitamins, gut dysbiosis, detox function etc). We are literally trying to define and profile the problem of fecal (systemic) body odor and/or halitosis and this is only the first stage.

The study hopes to provide some clues into the problem of fecal/gas body odor and other body odors and to stimulate interest, but also hopes to act as a template as to what can be achieved by an online community nowadays. The study will not conclusively prove the cause of fecal body odor in itself, but it hopes to act as starting point of a full range of studies to finally define the problem of fecal body odor, as well as look for cures. It especially hopes to be evidence to researchers, and to raise awareness of this problem, as well as highlight the numbers concerned. The only current diagnosis for metabolic body odor on offer by the medical system is TMAU, which many feel does not fully explain their problem.

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

The London meetup and the start of the MeBO-Biolab gut dysbiosis study hopefully points to a brighter future to anyone with this problem. Let the London meetup begin ...

From Miami to the London Meet-Up 2009

Hi everyone,

I’m getting ready to take my flight in only seven hours to our annual Body Odor Meet-Up at the London Thames Festival. I’ve just finished packing, and will get up at 3:00a.m., to shower for an hour before leaving at 4:00a.m. I will meet another member of our community from South Florida, who is going to join me in this pilgrimage. We will have a substantially long connection in New York, and should arrive on Friday morning in London, where at least five of us will meet for a while.

Who’s going to join us on Saturday and Sunday's Meet-Up? I would love to meet you all, so please do try to attend.

I will keep everyone updated of our weekend adventure as it progresses. I promise to post pictures (not of those who do not wish to be in the pictures) but of the sights of this beautiful city as we anticipate our meet-up on Saturday where I hope to meet with old friends and new ones.

Stay tuned for the latest updates,

María

p.s. I’ll be leaving my cats behind to their mischievous ways.

Systemic body odor and/or halitosis sufferers in Ireland can be referred to Dr Eileen Treacy in Dublin

Finding expert help for systemic body odor and/or halitosis can be very difficult if not impossible (for most it is impossible). However, sufferers in Ireland who feel their odor problem is systemic can be referred to Dr Eileen Treacy at the National Centre for Inherited Metabolic Disorders in the Childrens University Hospital in Dublin. Dr Treacy gave us permission to publish her instructions for referral in a post. The person must go through their Irish GP to get an appointment. Dr Treacy wrote :

We are happy to take Irish referrals. These should be made by writing (not email) from the individuals’ GP to the address below (National Centre for Inherited Metabolic Disorders).

Best wishes,
Eileen Treacy

Prof. Eileen Treacy,
Metabolic Consultant,
National Centre for Inherited Metabolic Disorders
Childrens University Hospital,
Temple St.,
Dublin 1

Dr Treacy has a respected history in TMAU research, with pubmed papers dating back to 1998. She worked as a pediatrician at the McGill University Hospital in Montreal, and possibly was an influence as to this hospital being one of only perhaps 3 labs who test for TMAU genotype (the urine test) in North America.

Dr Treacy has mentioned before that TMAU may warrant being added to newborn screening tests, and that the estimate for 'severe' TMAU (the classic type, where the person has 2 mutant copies) may be not greater than 1/5000 (which would be 60,000 in the USA), but that it is not known how many may have the milder types.

Her involvement in TMAU papers can be seen in this link
Pubmed papers about trimethylaminuria involving Dr Eileen Treacy

Some notes about papers Dr Treacy has been involved in :

2000 paper : typically TMAU is taught as being 2 mutant copies, but this paper mentions that polymorphisms, that are usually much less severely affected copies, in the case of FMO3 function may be an issue.

The results imply that prevalent polymorphisms of the human FMO3 gene may contribute to low penetrance predispositions to diseases associated with adverse environmental exposures to heteroatom-containing chemicals, drugs, and endogenous amines.
http://dmd.aspetjournals.org/cgi/content/full/28/2/169

2002 paper: In vivo variability of TMA oxidation is partially mediated by polymorphisms of the FMO3 gene

...We have previously described a number of FMO3 polymorphisms which in vitro exhibit reduced substrate affinity for several FMO substrates. Here we show that three prevalent polymorphisms (E158K, V257M, and E308G) inherited in particular combinations confer a slight decrease in TMA oxidation under normal physiological conditions, which may be clinically "silent." With the use of substrate loading or with the interaction of other known modulators of FMO3 activity such as hormonal influences, these genotypes may predispose to mild TMAU

http://www.ncbi.nlm.nih.gov/pubmed/11461189

2005 paper : Polymorphisms of the Flavin containing monooxygenase 3 (FMO3) gene do not predispose to essential hypertension in Caucasians
In this study conducted in Ireland, a large sample of high blood pressure and hypertension sufferers were compared against a group of healthy people with common FMO3 polymorphisms, with the hypothesis that such FMO3 polymorphisms could potentially predispose the person to high blood pressure and hypertension. Tyramine is a good FMO3 substrate and known to be involved with blood pressure control. The study found no link.

CONCLUSION: These results suggest that the variants in the FMO3 gene do not predispose to essential hypertension in this population.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16324215

---

Related links :
1998: Mutations of the flavin-containing monooxygenase gene (FMO3) cause trimethylaminuria, a defect in detoxication

OMMBID chapter on trimethlyaminuria written by Dr Eileen Treacy. The abstract is free but the full chapter costs around $30(?)

splashnews.com journalist looking for female TMAU sufferers story

The tmau.org.uk website has only been around a few months but already is having a big impact. The forum already has 30 members, and they already have an interview scheduled with Dr Robin Lachmann, who is the professional TMAU contact for sufferers at the London Adult Metabolism unit (ask Dr Lachmann a question).

Now a journalist (Laura Hinton) with splashnews.com has contacted them to find a female TMAU sufferer to tell their story for possible magazine or newspaper article material. This is a copy of the announcment from the tmau.org.uk front page. we hope they don't mind us posting it here.

News agency - seeks tmau sufferers for story

Laura hinton from splashnews.com is looking to write a feature on TMAU, this could be a great opportunity to get our story out there.

The agency syndicates to all of the major national newspapers and magazines.

We need YOU to volunteer !

Here's the email that Laura sent to me explaining what she is looking for.

"I'm emailing from Splash News Agency in London. We write real-life and human interest features for the national newspapers and the women's magazines. I know it's a long shot but I wondered if any females who suffer from trimethylaminuria would be happy to speak to me about their experiences in order to raise awareness of the condition? They would have to be photographed but can have a fake identity and I can request your website details are included in the copy.
I look forward to hearing from you....if people want to get in touch..they could just let me know a little about themselves like their age, where they're from and how the condition affects their life etc that would be really helpful. I can then let them know whether I think I can get their story placed. "

Laura provided a long list of national news papers and magazines that could potentially run the feature.

I know it is a big decision for anyone to make, but I would urge you to take courage from the fact that this could really advance our cause and help a lot of people in the process.

If you think you can help please contact Laura:

lhinton@splashnews.com This e-mail address is being protected from spambots. You need JavaScript enabled to view it

If you prefer you can use the 'Contact us' form on the tmau.org.uk website and we will forward your emails to Laura

Many Thanks...

The UPSIT Test (scratch and sniff odor home test)

Probably the main reason that body and halitosis is still around, and metabolic body odor is not accepted as a medical problem, is because usually the sufferer cannot smell themselves. Most with metabolic body odor would seem likely to be transient, and on a visit to the doctor there's a good chance they do not smell at that time nor know how to 'provoke' smelling. So as far as the medical industry grandees are concerned, there is little evidence of the problem.

Usually fellow sufferers, possibly only of the same type of body odor or halitosis, cannot smell each other either, and possibly it is the case that perhaps a small percentage of non-smelly people can smell sufferers mostly either (for instance, perhaps genetic carriers of a metabolic body odor cannot smell sufferers often). Dr John Cashman estimates that perhaps 8% of the population cannot smell trimethylamine when others can. As examples; perhaps those with 'mild' isovaleric acidemia cannot smell someone else with the same problem, but they can smell someone with trimethylaminuria ... and vice versa.

This 'selective anosmia' does not seem to apply only to metabolic body odors, but to all types of body odor and halitosis. For instance people with 'classic' body odor or 'classic' halitosis (the surface-type odor problems) seem not able to smell themselves. It may also seem likely that in these cases that 'loved ones' cannot smell them either. For instance, perhaps you know someone who is well respected and has a wife and children but has a habit of developing a body odor over a number of days then it disappears (after bathing) and starts again. The question is, can his wife and children smell him ?

In medical terms, the only current explanation would be 'anosmia', where people cannot smell certain smells. The current 'home test' for this would be the University of Pennsylvania Smell Identification Test (known as the UPSIT test). This is basically a 'scratch and sniff' test of 40 odours. The University of Pennsylvania has a smell and taste clinic, seemingly opened by the NIH. Someday perhaps there will be body odor and halitosis research centers and clinics opened by the NIH.

The UPSIT can be purchased from sites such as this for around $50 including everything needed.
Example seller : sensonics.com UPSIT Test

Although it may be an interesting test to do, it's not known if it will provide any clues to the mystery of metabolic body odor and halitosis (or other types).

Note : Unfortunately, although most body odor and halitosis sufferers cannot smell themselves, the anecdotal evidence seems to be that they can smell the smells from other sources other than through the skin. So the 'body odor/halitosis anosmia' does not seem to be as simple as being unable to smell certain smells, period. For instance, most people likely can smell a fish rotting, which presumably means they can smell trimethylamine from that source. There is no current explanation for this 'quirk'. A speculative guess would be that if your bloodstream has a certain level of 'smelly' toxins, then the 'smell receptor bar' is set higher than a normal person.

---

Other links
University of Pennsylvania Smell & Taste Center