Auld Lang Syne

As the year ticks towards it's end, a look back on the community memories of 2008, as we move forward to the new year and a new phase in bloodborne body odor and halitosis. Perhaps a crumb of comfort is, there's never been a better time to have bloodborne body odor or halitosis. Happy New Year.

Should old acquaintance be forgot,
And never brought to mind
Should old acquaintance be forgot,
And days long gone

For old long ago, my dear,
For old long gone,
We'll drink a cup of kindness yet,
For old long gone

Smelly moments of 2008

With the closing of the year, it seems a fitting time to look back at the year as it affected the bloodborne body and halitosis community, The Smelly Moments of 2008.

It was a year where the community 'came out of the dark' in its most prominent way yet, especially on the internet. No real breakthrough in medical advances were forthcoming as of yet, probably because they are still unaware, but some experts have been looking in our direction, as noted below, and the groundwork is beginning. In a community sense, it has been a remarkable year. A psychological shift has occurred. As well as ignorance from the medical field, fear and shame have played major roles in obstructing our own progress, for obvious reasons. The grip these two imposters have had on us has been greatly reduced over the last year in the internet world and in the real world, following on from the brave people who have made TV appearances in past years, and all the other previous work on the issue. A sense of self-help amongst the community seems to have formed, along with a visible presence on the internet.

Some 2008 memories:

This blog - Begun in May, and now with 410 posts by the end of 2008, including references to scientific papers, posting of Dr. Werner's paper, interview with Dr. Lachmann, a post written by Dr. Lord on dysbiosis, testimonies, community announcements such as references to Arun's scientific questionnaires, conference calls, and meet-ups. The aim is to be a new platform and another 'front' in the battle against metabolic body odor and halitosis. On average there can be about 50 visitors a day, from 75 countries, despite still lowly ranked on google.

Medical Advancements:

Arun Nagrath, Pharmacist. BSc Pharmacy Hons, MSc., Postgraduate researcher in Odour Analysis. In addition to Arun's scientific survey of Body Odor condition mentioned above, which was originally devised and modified in consultation with a consultant in metabolic medicine/TMAU, the following experts have also made the following contributions to this blog:

Dr. Detlef Werner, M.D. gave us his article Die Trimethylaminurie (fischgeruchsyndrom) - Hinweise auf Ein neue Therapiemöglichkeit mit Desmopressin, Trimethylaminuria (fish-odour syndrome): Hints for a New Therapeutic Option with Desmopressin, to post in this blog in hopes of promoting research.

Dr. Robin Lachmann, PhD, MRCP, Consultant in Metabolic Medicine, National Hospital for Neurology and Neurosurgery in London, was kind enough to be interviewed by Vanita, a Member of the TMAU Foundation in the UK, and the interview was posted in this blog.

Dr. Richard S. Lord, PhD, director of the Department of Science and Education at Metametrix Clinical Laboratory, where he served as vice president of research and development and laboratory director, has very kindly written in this blog for us in which he discusses his findings that represent another step in the unfolding story of what specific patterns constitute states of dysbiosis. In addition to his many credentials, has had a staff fellowship at NIH working in the Institute of Arthritis and Metabolic Disease. His knowledge of Metabolic Disease and dysbiosis, and his willingness to work with us gives us great hope for future research and discoveries about the causes and treatment of body odor conditions.

It has to be said that metabolic body odor and halitosis is still an unknown problem amongst the medical community, even trimethylaminuria to 99.9% of them, and so not much was achieved this year. However, contact is now starting to be made.

Conference calls:- Started by Cabel Hall early in the year, the conference phone calls had a huge impact on the community. Callers have numbered as high as 72 for Camille's memorable call. Including bi-weekly General Conference Calls sometimes featuring special guests, bi-weekly Women's Conference Calls, and impromptu conference calls, the calls are now an integral part of the community.

MSN forum restructured: After years of orphaned moderating and threads linking to deaf singles sites, the MSN forum was finally 'reclaimed' by the community, to be a safe haven for smelly people everywhere. And now the MSN Forum is getting ready to migrate to the new forum currently being designed by Kristen Jugueta.

Body Odor and Halitosis Personal Phone support: A few sufferers, such as Arun and Cheryl Fields, have kindly given their phone numbers out over many years, in order that anyone out there has someone to talk to, but this year saw a remarkable blossoming of this vital help. Now many sufferers kindly list their phone numbers on the MSN Body Odor Forum, so that personal support is only a call away.

Kristen's blog and website: A prominent pioneer this year was Kristen from Melbourne. She has big plans to help define the odor conditions, and as well as choosing a career in genetics in order to research further, she also plays a major role in setting up websites for others as well as her own, all to do with odor conditions and to further help. She also cheered us up with her singing.
http://www.kristenjugueta.com/ and http://www.tmauresearch.org/

Yahoo Trimethylaminuria Forum for the sufferers, by the sufferers: The yahoo TMAU forum was just one of many health forums started by it's original owner. For many years Sharon has been in fact the one running it. After a forum change in the summer, Sharon decided to make a new Yahoo Forum under her management, by and for body odor and halitosis sufferers who know/feel they have trimethylamuria. Already it has 235 members.

TMAU testing:
The TMAU test will likely become the most common metabolism test in the local metabolism unit someday, but at the moment it still remains a very rare test. In the USA, Arkansas Childrens Hospital took a more prominent role in allowing people to test direct via their Dr or via the Mayo Clinic, for the cheapest price yet. Sadly Susan Tjoa of the Denver lab that has tested for TMAU for a few years passed away, but the Denver lab likely still tests. In the UK, Medichecks added the TMAU test to their list of tests, unfortunately at a price that can't be recommended. The Doctors Laboratory in London also listed the test, both of them sourcing it from Sheffield Childrens Hospital.

Websites : Body Odor and Halitosis sites are starting to appear on the internet. Perhaps the last 'not uncommon' health-problem using the internet as a tool. Rob Brown is starting the Australian Trimethylaminuria Foundation Charity site, the website currently being built. There has also been mention of the TMAU Foundation building a website.

Arun's scientific Body Odor Survey had an overwhelming response of 98 participants. The results are currently being evaluated. The results can be seen here

Anthology: Richard Cook is collecting an anthology of poems, essays, short stories, and personal quotes written by persons suffering from a body odor condition who belong to the MSN Body Odor Support Group community. Our very own Ben Rimmer will include his portrait paintings of each author to enhance the beauty of this work. This anthology will be used in a fundraising effort to support the research goals of the Metabolic Body Odor Charity currently being registered in the UK.

Meet-ups: The original founder of our meet-ups, Arun, has been organizing them for years in the UK. This year, he organized one in Manchester in the summer, the Thames Festival Meet-up in September, and the Christmas meet-up in December. Sonya and Rebecca met in the US, and more meet-ups are being organized for the year 2009. Scott is organizing one in Chicago, Lori in Atlanta, and Jess and María in Miami. There will be many more to come throughout the year...

So overall it seems much progress was made in social networking and in sufferer websites, further diminishing the shame and fear, which is very important, but in medical advancement little progress was made. However, progress is being made in raising awareness and promoting research in ways that will hopefully bear fruit in the coming years, hopefully starting with 2009. A lot will be done in 2009 to raise awareness. And the blog is always here now, for experts to contact should they find it on the internet.

Q: Who invented body odor? A: Advertising men.

This is an interesting article in which historian, Stuart Ewen, depicts the historical development of body odor products and their very profitable marketing advertisement campaigns launched in the early 1900s, aimed at manipulating social consciousness regarding BO. This marketing strategy targeted the very social perception of odor and "played heavily on fears" about how others would react to a halitosis sufferer.

Using headlines such as, "Would you have told him the truth?" and "[Edna]...Often a bridesmaid but never a bride", they managed to take an already "delicate subject" and brought it to the limelight to offer their products as the solution to this undesirable curse. Ewen notes, "... [advertisers] tried to endow people with a 'critical self-consciousness' directed especially at their personal appearances."

In the 1910s and particularly the 1920s, advertising agents focused their attention on identifying—and often inventing—personal anxieties that could be resolved by the purchase of specific products...In response to the ad campaign, Listerine sales went from $100,000 per year in 1921 to more than $4 million in 1927. Meanwhile, the strategy of ads as “quick-tempo socio-dramas in which readers were invited to identify with temporary victims in tragedies of social shame,” writes historian Roland Marchand, led to a new “school of advertising practice.”

http://chnm.gmu.edu/features/sidelights/whoinventedbo.html

Olives blog

This is Olive's blog on MSN Multiply.











http://copperolivegreen.multiply.com

Festive drinking and metabolic body odor : For those 'intolerant'

At this time of year, those with a bloodborne body odor condition may partake in alcohol consumption along with the normals. The question is, will they metabolically 'handle' it the same way as a normal person ? At this point, we don't know. This is aimed at those who feel they tolerate alcohol badly, whether it's a new problem, or whether they have always had an intolerance. Such reactions would be 3 day hangovers, with perhaps the worst being a 'chemically depressed' feeling 72 hours later. Or bad reactions when drinking, such as facial flushing or feeling sick or painful kidneys.

So if alcohol tends to not agree with you (despite the will being there), this post is for you. Why is the drinking-reaction so bad ?

At the moment, we don't know. If you feel ok after drinking, then it may not be an issue. For the record, here are some possible hypothetical ideas to explain alcohol intolerance or bad reactions.

1: Aldehyde dehydrogenase enzyme : This doesn't seem to be part of the phase1/phase2 drug-metabolizing enzymes, but seems to be closely related to phase1 (which also generally oxidize/dehydrolize things). It deals with aldehydes. In the case of alcohol, it deals with the resulting acetaldehyde.

Alcohol is ethanol, and is usually detoxed in this way
Ethanol (mildly toxic) > Acetaldehyde (very toxic) > Acetate (non-toxic)
The acetaldehyde is changed to acetate by the aldehyde dehydrogenase (ALDH) enzyme. If there is a bottleneck at this point, people tend to feel very ill. Some genetically have a 'weak' ALDH2 enzyme, and have a very bad reaction to alcohol. This is very common in certain ethnics, such as Asians and Native Americans. Alcoholics can even be prescribed a drug that depresses this enzyme so they have a bad reaction to alcohol.

ALDHs have been found in nearly every form of living thing. Their primary role in humans and other mammals is protecting the body from toxic compounds called aldehydes. Early interest (in the 70s), focused on an ALDH in the liver that helps metabolize an aldehyde (acetaldehyde) that comes from alcohol, changing it to acetic acid, which the body burns for energy. A drug called Antabuse — sometimes used in treating alcoholism — deactivates the relevant ALDH, making you sick if you drink.
http://www.psc.edu/science/hempel.html

CYP2E1, one of the cyp450 enzyme superfamily, seems to play a role in ALDH function. Perhaps this is a weakpoint. We don't know. This is one of the phase1 CYP450 enzyme superfamily.

2: Leaky gut : There have been studies where only those alcoholics with leaky gut develop cirrhosis. Perhaps leaky gut is a factor
1999 pubmed paper: Leaky gut in alcoholic cirrhosis: a possible mechanism for alcohol-induced liver damage

3: Candida overgrowth : Candida produces ethanol. Presumably in very low levels, but perhaps the body is fed up with the constant ethanol load. Or any other dysbiosis problem. Many microbes produce alcohols.

4: Vitmain and mineral status : perhaps this is a factor. Currently unknown.

5: You are permanently mildly ill : you wouldn't drink with a cold/flu. People who have fecal body odor, there is something very odd going on. The medical system regards such a problem as only possible in certain rare cases very close to death. Of course they are wrong, but these toxins can't be good for you. Anyone with this problem should probably regard themselves as currently permanently 'ill'. Perhaps 'general malaise' would be the term

At this point, there are no answers. This is purely to promote thought.

---

related links
wikipedia: Aldehyde_dehydrogenase
wikipedia:ALDH2
ALDH.org: alcohol facial flushing
Random articles from the NIAAA

Things are changing, by Cabel Hall

Things are changing in our lives and in our community. Look at all of the great things that are happening around here lately. It's amazing to see. It fills me with great hope for the future.

What is different now than before?

Well, it's not just that we are finally communicating with each other. Although we are communicating now more than ever, we have always had phones and email addresses and cars to go to meet ups.

No. I see the change happening within ourselves.

I see it when a new member comes in our group and this person is flooded with emails. I hear it when one of the "old timers" come on the conference calls for the first time and it is like talking to an old friend whose words have been with you for ages.

I see it in Maria who sacrifices much of her time to love us and I see it in Arun when he gets more and more assurance that he will finally be able to study this disorder when in the past he was hindered.

We are finally as a community thinking about one another before we think about ourselves. We are finally becoming friends...and friends hate to see each other in pain. We always want to help our friends.

Think about how far we have come in a year! Think about where we will be in 3 years from now.

Let me be very serious with all of you:

We will not have a cure unless we know how many of us there are in this world and what our symptoms are.

Treat it as a mission...treat it as your life's mission to find all of us that you can. Treat it as a mission to be there in the depths of despair with a fellow sufferer. They need you, and you need them.

I think about how far we have come and I think about how far we need to go. There are still those of us out there on the brink of suicide...there are some of us who just need someone to talk to who can FINALLY and TRULY understand what they are going through.

I see so much fear in us but I also see love...it's just been buried under a mountain of insults and tears. It shouldn't sit well with any of us here that there are people like us who are languishing in fear and depression. It actually helps us when we help other people.

I am always amazed at how love can change us. It helps the lover and the loved. I am always amazed at how love can drive away fear.

Cabel From an MSN forum post

Homeworking idea: An interview with a former eBay Store owner

Even though a sufferer may have had some success controlling his or her strong body odor with a management protocol, most sufferers find that they still have intermittent flare-ups that may create unpleasant experiences in the work place. Although not all personality types prefer to work at home, and some sufferers may find a more social work environment more enjoyable, the more reclusive home environment may represent a refuge to a sufferer from his or her co-workers' ridicule and rejections normally encountered in a more social work setting.

In this interview, Glenna has kindly offered to share with us her personal experience with her eBay Store business venture, which allowed her to work from home. She tells us that this line of work provides the sufferer with the opportunity to work either full-time or part-time from home.

Interview with Glenna Gonzalez:

MARÍA: Glenna, on behalf of this community, I want to thank you for dedicating your time to do this interview for us. Please tell us what led you to start an eBay Store, and did it work out well for you?

GLENNA: I started an eBay store because I wanted to do something that was fun. I have done so many things that required selling, mostly face to face, and I was looking for something that would give me the opportunity to work from home, part-time, without having to do in-person sales. I have sold Avon, been in several network marketing companies, and actually had a store in a small strip mall. It did work out well as a part-time venture, but I closed my online eBay store after two years, because it was difficult to keep up with it, while working full-time and taking a full load of Graduate Classes.

MARÍA: What would you say are the pros and cons of starting a home business venture like an eBay Store, such as working from home, salary range, etc., benefits?

GLENNA: One of the cons of starting a home based business venture like an eBay store is that it requires a lot of time and effort, even before you begin to make any money. I expected that eBay would be easier. It requires too much time and effort for someone who has several other things going, like I do.

One of the pros of starting a home based business venture like an eBay store is that it can be fun and profitable. It was fun, and I enjoyed the feedback and interaction from the people I sold products to. Also, I sold quite a bit offline to coworkers, after they stated that they were interested in certain items, but did not want to purchase them online. There are a lot of pros to starting a business venture like eBay if you have the knowledge. There is a lot of competition on eBay, but I have known others who have been doing it for a long time and have done extremely well. I would advise anyone who is considering this as a full-time venture, to really learn the techniques that lead to success. For instance, there are days when your listings will get more views than other days and there are peak times when people are shopping on eBay and ready to spend money. You must know such things if you want to succeed. This type of information can make the difference between losing money and making money.
One very good thing is that eBay offers training courses and there are a lot of books and courses to help you succeed. You have to be willing to learn what it takes in order to optimize your profits and reduce losses.

In terms of the salary range, you can determine your own pay with eBay. The right amount of knowledge is required to really do well. I have known people that have made on average $2,000 per month with eBay. I did not make that much part-time, but what I did make was decent, some months.

Finally, the best pro about an eBay business is that you can work from home. Most vendors will drop-ship for you, anywhere in the United States, but there will come a time or two when you will have to make a trip to UPS, the Post Office or some local packaging store.


MARÍA: Was there an upfront financial investment to get your eBay Store off the ground, and how long did it take to recover this investment?

GLENNA: Right now, there is a free step-by-step training cd kit that will educate you on how to be a seller on EBay. You can find this kit on eBay. You can start an eBay store for free. After a month or so, you will have a small monthly fee to pay for your store. I paid on average, about $20 per month for my store. In an eBay store, you can showcase all of your merchandise in one central location, where potential buyers can learn more about you, your products, and your policies. The pictures I used in my store were the ones I had access to from my vendors. The upfront financial investment will come from these vendors, if they require a fee for membership. They may not charge any fees, but may require a minimum purchase. These are warehouses with various lines of products for store owners and small business owners. They will sell to you at a discount so that you can then make a profit on those products. Some require deposits or membership payments, others don’t. One would have to research the vendors that offer the types of products they want to sell. For instance, if you want to sell purses, you would find companies that will allow you to resale their products to your customers. It may take months to recover your investment, so you must determine if you have the money and time to wait until you receive your investment back.

MARÍA: Are there any courses one would have to take to start an eBay Store? If so, where would one enroll?

GLENNA: EBay offers training courses. There are also other books that you can get from your local library or from bookstores. For instance, there is eBay for Dummies by Roland Woerner and Stephanie Becker.

MARÍA: Where do you get the merchandise to sell?

GLENNA: There are various warehouses that sell wholesale to someone who has a Resale Certificate or the proper licensing.

MARÍA: What types of products are good to sell in an eBay Store (profitable, easy to handle, etc)?

GLENNA: I enjoyed selling leather products and home decor on eBay. However, you must research to see which items are the best-selling items. Electronic items, like Nintendo, Playstation, etc. often sell very well on eBay. I don’t know much about the vendors for these though. A little research will reveal the best wholesalers for these items.

MARÍA: How do you market your product?

GLENNA: Listing your store’s web address in the search engines will help you market your store, if you choose to have a store. You can also list your items in the “auction” section of eBay, without maintaining a store. One would have to evaluate what is the best selling format for them- an online store or listings in auctions. Also, business cards with your eBay store web address will help to market your products as well. Sharing your store with friends and coworkers will help.

MARÍA: Does it take much time to build up a clientele?

GLENNA: It often takes months to build a good clientele. Most of these people will be people that you know, like friends and family. There is so much competition on eBay, but if you have a unique product, etc., you can build a sizable audience in perhaps six months. Otherwise, it will take a year or so, from my personal experience. However, that doesn’t have to be the case. I was doing so many other things, as well.

MARÍA: Does an eBay Store owner have to put money upfront to start this business venture, and if so, approximately how much would it cost?

GLENNA: EBay has plans that will allow you to start a store for free, and then they begin to charge you a month or so later. I paid, on average, about $20 per month for my store and listings. However, that is on the lower end. It varies based on the features of the store and the number of products you list for auctions.

MARÍA: How would your customers pay for the product you sell them? Can they use PayPal or their personal credit cards?

GLENNA: I received payment from my customers via a PayPal account. I have a PayPal debit card associated with that account. It has a MasterCard logo on it so you can use the money in the account to purchase gas, food, or from anyplace that accepts MasterCard. Even now, the father of my children deposits money in my PayPal account for their lunch, etc. Thus, family members or friends can send you money via PayPal. Customers can also use their personal credit cards.

MARÍA: Would you need to have indemnity insurance?

GLENNA: Depending on the fragility of the items you are shipping, you may or may not want to insure these products. Otherwise, one should research the need for indemnity insurance in conjunction with their eBay business.

MARÍA: How would you set up the Federal, State, and City tax requirements, if any, for the business?

GLENNA: Here in my local county, I registered the DBA name for my business, set up a tax account with my state and I received a Resale Certificate. Some counties will actually send you a license. Federal, State, and City tax requirements and licensing varies, so a prospective seller must find out what is required in their state and locality. I did have to pay taxes for items sold here in Texas, but not for items that were drop-shipped to other states.

MARÍA: Is there anything else you would like to say to any BO sufferer who may be interested in working from home and starting his/her own eBay Store?

GLENNA: I would encourage anyone who is interested in selling on eBay to really do your “due diligence”. You must determine if this is something that you can afford to do, you must research whether the products you are interested in selling there will be profitable, you must consider your competitors for those products, and you must be willing to learn what it takes to really succeed in a business like eBay. There are, of course, thousands of other options for working from home. EBay is just one of many. However, eBay can be very fun and rewarding for those who will take it seriously. I have known others who have done extremely well with eBay. I did well for part-time, but there are others who make a significant income because they were willing to invest the time it takes to learn the business.

Glenna tells us that if we need any more information, she would be happy to help. So, if you do, please write a comment in this post, and Glenna will reply to you.

MARÍA: Thank you very much, Glenna, for so generously dedicating time to help those who would like to work from home.

Merry Christmas 2008

May this Christmas Season bring peace and blessings to each and every one of you and your family. Wishing you all the happiness for the New Year with many good things to come!

With the way we are advancing, there has never been a better time to have metabolic body odor. As a community, not only have we offered each other camaraderie and support, but we have learned from each other various techniques to decrease and or to control our odor. We are now united like never before in our efforts to reach out to experts for answers as a community. We are now very well on our way to initiate an international fundraising effort for research in the year 2009. Together, we finally share hope for ourselves and our future generations.

In the Christmas spirit, I would like to share with you a video that depicts the typical Christmas dinner preparations in the Cuban community in Miami, Florida. Using the 'Caja China' to roast a pig that has instead traditionally been cooked in an outdoor pit is very much a take-off technique from the Chinese culture of cooking with a similar box-like apparatus. From my home and family to yours, I share my people's Christmas rituals with you for your entertainment.

Merry Christmas to all the readers!

Maria

Personal development coach : cheap downloads on Amazon to try

You would think one of the aims of personal development practitioners would be not to exclude the poor from their skills, but like most health businesses on the mature internet, in practice it doesn't seem this way. No-one minds them being rewarded (?), but perhaps some 'lateral thinking' is needed, for a business model that is win/win (hotmail was bought by MSN with the intention of being a paid service, and then gmail came along and changed the business model... with ads). Some, like Paul McKenna, charge nothing for personal sessions, but his MP3s are pretty expensive. It is unknown how much profit they make from each sale and how rich they are, so the criticism may be due to lack of thought rather than intended.

Looking around the hypnotism/personal development download sites, their downloads seem expensive considering they are unknown, with almost no chance to know what you are buying (the websites and sales experience could be greatly improved if they wanted)

However, one 'coach' stands out as using the internet correctly to connect to the 'needy', for deciding to put his mp3s on sale on Amazon, for a very cheap price: Michael J Emery. He seems to practice NLP. His MP3s are about a $ each. many of them being 30+ minutes. This isn't to say his MP3s are effective (hopefully they are), but at that price everyone can try them at little loss ... including the poor. He also has a website (email needed, unfortunately) and puts videos on youtube

Michaels website : attentionshifting.com

Michaels youtube page

Note : The MP3s on his website seem very expensive, whereras the ones on Amazon are less than a $ each and look to be the same MP3s. Only buying from Amazon could be suggested.

101 ways to treat yourself

101 ways for a metabolic Body Odor / halitosis sufferer to treat themselves to boost their morale and make the life experience as good as possible whilst waiting for answers, and also help in searching for answers. It also gets us into the habit of thinking of ways to improve your situation and to thinking of ways out of 'dead end'

1: Use personal-development MP3s. Its better than nothing and your current thought pattern. They seem good enough for extremely rich athletes. Anything to get our spongy brains into a better pattern. How you are expected to react in situations can make a big change to tormentors psychology.
2: Treat yourself weekly/monthly that will be an 'improvement' (to you or your house or whatever). Even if it's something 'insignificant' (e.g. executive chair for sitting at the computer)
3: Go on some holiday once or twice a year
4: Express your feelings : write poetry to try and get in touch with yourself.
5: Focus on what you CAN do
6: List your fears/bad situations on a scale of 1 to 10 and focus on the least-scary ones first.
7: Have little meditation 'timeouts' throughout the day, even if it's just counting to 100. Say, after each meal. To get your mind back. Who owns your mind ?
8: Meet up with other metabolic/systemic/bloodborne body odor or halitosis sufferers. The evidence suggests those with 'internal' odors, especially fecal body odor, cannot smell each other. So you have nothing to fear in their company, and can be 'normal'

9: If you go to a (for example) psychologist, try a few out and decide which is best. If none, then try more. In most 'health' services, they get paid for failure (since it's often subjective and/or efficiency is hard to define). The rule in life seems to be, mediocrity is the best you can expect, poor quality is more likely, and usually the competent ones are much harder to find. So look out for the good ones. You deserve it. Same goes for any 'health' service, including doctors. The sports profession uses this attitude, all of them being very rich and healthy already. It's them being paid for the service, not you.
10: Get a pet
11: Watch a video/read a book/listen to an album each week
12: Download music from Amazon. DRM free
...
101: Make your own list. You will be amazed what ideas you come up with.

to be continued.

ps, not to be taken literally :)

Rowantree report : Criminals have too high esteem

Mark Tyrell is a Neuro-linguistic_programming hypnotist in the UK. In this article on his site, he refers to the 2001 Rowntree report, in which they conclude criminals have 'too high esteem', rather than 'too low' as people generally presume.

This is likely true of body odor and halitosis tormentors (over a certain age), since it's obvious the person is suffering. You could say metabolic body odor is a test of peoples morality. The overly high-esteem principle seems to be true, since most seem to have a high opinion of their own status. Some may believe karma will eventually catch up with them.

The article is an interesting view of the psychology of self-esteem.

http://www.self-confidence.co.uk/self/esteem/tips.html

Recent Monell Institute paper : Odor ID in mice not disguised by diet

• October 30, 2008: Media release on Odor ID Not Disguised by Diet paper(PDF document)

Scientists from the Monell Center present behavioral and chemical findings to reveal that an individual's underlying 'odor signature' remains detectable even in the face of major dietary changes. The findings indicate that biologically-based odorprints, like fingerprints, could be a reliable way to identify individual humans.

This recent research paper from the Monell Institute at first glance seems to raise more questions than answers for metabolic body odor and halitosis sufferers, under the premise we hope the smells we are known for aren't our 'signature' smells. It wouldn't seem so, since it's very unlikely there's any advantage in having such a signature as fecal body odor :) . The signature seems to be mainly to do with odors associated with the Major Histocompatibility Complex, a cluster of genes important to immune system integrity and identity. Usually the olfactory cues in that case are looking for odor differences.

It is interesting that they mention how strongly diet can influence odortypes. This is generally accepted regarding different cultures and their diets, although presumably no culture accepts fecal body odor. Presumably they mean people can smell of the diet (for instance eating a curry), and also the odors from microbes feeding off the diet and resulting metabolites, but again fecal body odor and trimethylaminuria are unlikely part of the equation. They likely mean at very subtle, or undetectable, or desensitized levels. Metabolic body odor is likely a different ball game altogether. The sad part seems to be that they accept diet can make people smell all of all sorts of smells, but the only test for sufferers on offer is the trimethylamine test. The test used for these mice would seem much more preferable (i.e. a blank slate)

Also of interest is how many chemicals from their environment was in their urine.

Plosone.org Full Paper: Genetically-Based Olfactory Signatures Persist Despite Dietary Variation

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Vitamin B3 : The niacin flush (caused by increased blood flow and histamine release)

Sufferers of metabolic/systemic/bloodborne body odor are likely to experiment with vitamins and minerals. Most will likely at some point have experienced the 'niacin flush' after taking 10mg+ of niacin (vitamin B3), which is a tingling reaction and red blotches on the skin (as histamine is locally released). Niacin is Vitamin B3.

This post is written for those with metabolic/systemic/bloodborne (they all mean the same, in terms of end result) body odor and/or halitosis in case they ever try niacin and don't know what is happening. It's also a chance to think about niacin and what role it could have in metabolic body odor and/or halitosis.

Co-enzyme in phase1 biotransformation reactions
Niacin is the precursor for NAD/NADP/NADPH (Nicotinamide adenine, Nicotinamide adenine dinucleotide phosphate). Judging by the graphs of drug-metabolism enzyme reactions, NADPH seems to play an important role in being the hydrogen donor for phase1 biotransformation reactions. This seems to include FMO3.

Introduction
The flavin-containing monooxygenase (FMO, EC 1.14.13.8) is an NADPH-dependent enzyme that catalyzes the oxygenation of a wide variety of compounds containing nitrogen, sulfur or other heteroatoms (Cashman and Zhang, 2006; Krueger and Williams, 2005). FMO3 is considered a prominent form expressed in adult human liver (Lomri, et al., 1992) and plays a role in processing nucleophilic drugs such as the anticancer drug tamoxifen, the pain medication codeine, the antifungal drug ketoconazole, the addictive chemical nicotine found in tobacco, and the diet-derived chemical trimethylamine (Cashman, et al., 2000; Ziegler, 2002).
http://dmd.aspetjournals.org/cgi/content/full/35/3/328

In theory, someone with a vitamin/mineral deficiency could end up with a 'metabolic disorder' the same way that someone with a flawed enzyme has, because the enzyme depends on co-enzymes/co-factors to function (i.e. what is the weakest link). At this point, we don't know if this is a factor in the typical metabolic body odor profile. hopefully someday we will. B Vitamins seem to be produced by friendly bacteria, but at this time the medical system does not seem to take this into account how important (if at all) this source is to humans.

Open up the capillaries. The histamine released causes the blotching
Niacin is also 'touted' by some as having a certain 'detox' property. It is known to open the blood vessels including the capillaries (this causes the histamine surge which causes the blotching ). Ron Hubbard (the scientologist) looked into how to help drug addicts detoxify in the 1970's and came up with a detox plan that centred around niacin, saunas, and fatty acids. The niacin was to supply blood as far as possible around the body, so that fatty tissue would then deposit it's 'toxins' into the bloodstream for removal. The idea of toxins staying in fatty tissue (and even bone) seems accepted by natural medicine, and seems common sense. If the blood is toxic and overloaded, the idea is that it dumps the excess toxins into solid tissue to keep the blood as 'clean' as possible, and probably leaves it there as the onslaught never stops. This is why people are expected to feel bad at first with detox, although it could be more than that for metabolic body odor sufferers (such as dysbiosis die-off). Hubbards detox program seems to be a niche 'detox program' so it can't be recommended. Also, unfortunately for metabolic body odor sufferers, it's possible there is a metabolic weakness, and so you can never tell how such a person will react to things that are good for 'normal' people. At this point we don't understand the syndrome, so no advice or recommendation can be given. B vitamins are usually methyl compounds.

Perhaps someday we will have a general idea of the metabolic body odor sufferer B vitamin profile.

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Niacin - causes the 'niacin flush' at high levels. The blotching is due to histamine. Opens up the capillaries and supplies blood to peripheral areas.
A precursor for NAD/NADP/NADPH, which is a co-enzyme in many phase 1 drug-metabolizing reactions

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related links:
http://www.detoxacademy.org/detox_basics.htm
Ron Hubbard (scientologist) famous book on his 'niacin flush' detox program for drug addicts : clearbodyclearmind.com
Healthy.net : Elson Haas article on niacin
http://en.wikipedia.org/wiki/Nicotinamide_adenine_dinucleotide_phosphate

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Bromhidrosis: Differential Diagnoses & Workup

This Medscape article from WebMD discusses at length the Differential Diagnoses, Workup, Treatment & Medications involved in dealing with bromhidrosis. There are two causes of bromhidrosis noted in this article are Erythrasma, a chronic superficial infection of the intertriginous areas of the skin by the organism Corynebacterium minutissimum, and Trichomycosis Axillaris, a superficial bacterial colonization of the axillary hair shafts, as noted under 'Differential Diagnoses'.

Workup

Laboratory Studies

• Typically, the olfactory perception of the diagnostician is the only clinical tool required for diagnosis.
* Chromatography or spectroscopy may help identify odor-producing chemicals; however, the specific identification of odoriferous molecules is largely of academic interest and lacks diagnostic or therapeutic importance.
* In addition, results of chromatography or spectroscopy do not help in differentiating normal odor from odor caused by bromhidrosis.

• If concomitant erythrasma, a chronic bacterial infection of Corynebacterium minutissimum is suspected, the skin has a characteristic coral-red fluorescence under Wood lamp examination, and a potassium hydroxide preparation is negative for hyphae.

• Potassium hydroxide preparation shows bacteria within concretions from axillary hair in cases of trichomycosis axillaris.

• If an underlying metabolic disorder is suspected as a cause of odor, specific testing of urine or sweat may be indicated to detect the aberrant amino acid product.

Miscellaneous

...Failure to recognize systemic diseases (eg, fish odor syndrome) that contribute to the development of offensive odor could serve as the basis for a claim of delay in diagnosis if body odor was the chief presenting sign.

http://emedicine.medscape.com/article/1054088-overview

Mayo Clinic Proceedings: Hyperhidrosis

Although this article deals with hyperhidrosis (excessive sweating), which may or may not involve bromhidrosis (foul-smelling sweat), it is posted in this blog as some visitors suffer from this condition and have requested information on this topic.

The socially embarrassing disorder of excessive sweating, or hyperhidrosis, and its treatment options are gaining widespread attention. In order of frequency, palmar-plantar, palmar-axillary, isolated axillary, and craniofacial hyperhidrosis are distinct disorders of sudomotor regulation. A common link among these disorders is an excessive, nonthermoregulatory sweat response often to emotional stimuli in body regions influenced by the anterior cingulate cortex as opposed to the thermoregulatory sweat response regulated by the preoptic-anterior hypothalamus. Diagnosis of these mechanistically ambiguous disorders is primarily from patient history and physical examination, whereas results of laboratory studies performed with indicator powder reveal the distribution and severity of resting hyperhidrosis and document the integrity of thermoregulatory sweating. Treatment options lie on a continuum based on the severity of hyperhidrosis and the risks and benefits of therapy. In general, therapy begins with antiperspirants or anticholinergics. Iontophoresis is available for palmar-plantar and axillary hyperhidrosis. Botulinum toxin type A or local excision/curettage is effective for isolated axillary hyperhidrosis not responsive to topical application of aluminum chloride. Endoscopic thoracic sympathectomy may be used for severe cases of palmar-plantar and palmar-axillary hyperhidrosis. No sole therapy of choice has emerged for craniofacial sweating. The long-term sequelae of hyperhidrosis and its treatment also are discussed.

http://www.mayoclinicproceedings.com/inside.asp?a=1&ref=8005crc

Topics discussed in last night's Women's Conference Call

In last night’s conference calls we began discussing how BO affects our personal relationships with our significant other. In our discussion, we noted that body odor doesn’t seem to stop some people from having a very active sexual life, and in some cases, with multiple partners resulting in infidelity issues, while others believe that their odor prevents them from establishing even one relationship. After much discussion, there seems to be the consensus that what really determines whether or not a sufferer will be in a relationship is how each individual sufferer deals with his or her own BO condition at an emotional level, along with all the same factors affecting non-sufferers, including personality types and social opportunities.

We also discussed the various remedies that have worked and not worked for bromhidrosis and hyperhidrosis including body odor cleanser alternatives, particularly around the groin area. Thai crystals (for external groin area – not vaginally), feminine washes, and corn starch were considered effective by those who have tried them, while Dial antibacterial soap seemed to be too drying. Some wondered if long term usage of this soap may be adversely affecting the healthy vaginal microbial balance.

We were most impressed with Dr. Richard Lord’s new way of looking at the quantification of intestinal microbial global composition using a stool testing method involving the DNA analysis of fecal microbiota. We noted how much more advantageous his method is compared to the old techniques of testing microflora using stool cultures. The Polylmerase Chain Reactions (PCR) approach provides a unique bacterial identification result that could then help a clinician restore the proper microflora balance in the gut. This much more accurate testing method determines whether a person has dysbiosis, which Dr. Lord defines as an overgrowth or lack of diversity of microflora. We were all very excited with the potential this new testing method which may provide us the opportunity to identify odor-producing bacteria, and thus help us manage and control our odor.

Women's Conference Call on Wednesday, December 17, at 8:30p.m.

Hello Ladies,

I hope you join Tisha and me tomorrow in our Women's Conference Call starting at 8:30p.m. We can have a discussion about relationships, understanding ourselves as women in a relationship, coping with an odor condition, and the men in our lives.

We can proudly say that we have finished writing our poetry, essays, and short stories for our anthology about living with a body odor condition in which we explored and expressed many of our feelings that we had bottled up inside for so long. I think we're ready to go to a higher level of self-exploration involving raising our self-awareness, exploring who we are, raising awareness of what we want in our relationship with our significant other, and what role we want to play in this relationship.

Of course, we will have ample time for our usual 'open forum' during which time we can raise any unrelated questions or stories we like.

Hope to 'see' all of you there!

María

Soundtrack: ' Danza lucumí '(Afro-Cuban 1950s) by Ernesto Lecuona

1983 Paper: Profiles of Urinary Volatiles from 3 'odorous' Metabolic Disorders

Clinicians frequently associate peculiar body odors with a disease state, and for several disorders, such as trimethylaminuria, isovaleric acedemia, and maple syrup urine disease, "the odors are distinct enough to be diagnoses with a urine test using a gas chromatograph (GC)". See previous posts in this blog under the label: 'recognised metabolic odor conditions' for further reading on these metabolic disorders.

This 1983 article compares the profile of urinary volatiles from a healthy subject with those suffering from these metabolic disorders. The graphs on this paper clearly depict how the pathological profile was dominated by a few major components instead of the large number of minor components usually present in normal profiles. Yet, "Despite the apparent utility of an assessment of patient odor, little work has been done to define these diagnostic criteria..."

The volatiles profiles of patients suffering from this disorder [TMAU]were strikingly simple. A single large peak, usually the first peak to appear, Dominated the GC chromatogram. The compound eluting in this peak, identified as Trimethylamine by GC-MS, was present at such high amounts that in the short time required to saturate the collection trap, no other compounds were extracted to detectable quantities. Figure 6 is typical of the profiles obtained from a number of such patients...Contrary to earlier reports (13), we have found trimethylaminuria to be relatively frequent. In this laboratory over a period of about three years, 10 patients have been confirmed as suffering from this disorder, and we are aware that a similar number has been seen in other laboratories (D. M. Danks, personal communications). We will publish the results of a detailed investigation of this disorder in the near future.

abstract: http://www.clinchem.org/cgi/content/abstract/29/10/1834?
full paper (PDF): http://www.clinchem.org/cgi/reprint/29/10/1834.pdf

Can you test gut candidiasis with an alcohol breathalyzer ?

A specialising lab in the UK, Biolab, believes that yeast is the most likely producer of ethanol from sugar in the gut, and so they have designed their gut candidiasis test based on this. They give you a sugar-challenge and then test your blood for ethanol levels (as well as other alcohols, that are thought to be produced by bacterias). Their test is primed to test you for small intestine fungal overgrowth, the first blood sample drawn an hour after glucose ingestion as the glucose capsule has not had time to reach the colon by then.

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

Excessive growth of Candida in the small intestine results in the production of ethanol from ingested dietary carbohydrate. The alcohol thus produced passes into the blood. The exact identity of the fungus involved is still open to question, but the assumption is that it is the growth of either Candida or another yeast that causes the symptoms...

...Increased ethanol with no methanol and only slight increases in other alcohols suggests yeast overgrowth. Increased ethanol with some methanol present and only slight increases in other alcohols suggests that there may have been ingestion of alcohol in the 24 hours prior to the test. An increase in a range of alcohols, but not ethanol, suggests a bacterial dysbiosis in the small intestine, possibly due to malabsorption. Similarly raised levels of short chain fatty acids, with normal or nearly-normal blood alcohols, suggests increased bacterial fermentation in the colon, probably secondary to mild small intestinal malabsorption.

http://www.biolab.co.uk/docs/gfp.pdf

This poses the question; if the theory is correct, can an ordinary 'alcohol breathalyzer' detect gut yeast overgrowth, since it actually tests for ethanol (alcohol being the common term used for ethanol in beverages) ?

The answer seems to be no. The levels of 'ethanol' Biolab are testing for are 100-1000 times less than the levels an ordinary breathalyzer test for. However, you can never be sure that someone with a bad candida problem may be close to 'over the limit'. It's unlikely, although there have been a few court cases claiming this defence. Some naturopaths have spoken of smelling a 'beery smell' from candida sufferers. So maybe it's worth buying the very cheap ($10) breathalyzers to see, under the premise you will always be 'nil', but it seems a waste of money to buy a decent breathalyzer.

other labs methods of detecting yeast metabolites in body fluids:
Metametrix use D-arabinitol as the marker for yeast fermentation status in their urine dysbiosis marker test.
Genova use Arabinose, Tartaric acid, and Citramalic acid. Metabolic Analysis Profile (Organic Acids)

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related links:
Biolab abstract : Intestinal dysbosis, a review
Biolab abstract: Abnormal Gut Fermentation: Laboratory Studies Reveal Deficiency of B Vitamins, Zinc and Magnesium

Many topics were discussed in yesterday's Conference Call

Yesterday's conference call was indeed global since we had callers from the U.S., U.K, and Australia. Kristen called us all the way from Australia, and we discussed the new forum she is creating for us to migrate to before MSN shuts our Support Group forum down in late February 2009. She presented many exciting features that she would like to add to our new forum; and we all agreed that we would first start with establishing a forum in which we could meet as a community to share our thoughts and feelings. Kristen said that this phase of this project would be up and running before the MSN forum goes down. She tells us that all the other features she plans to include will be added afterwards in time. It will be a work in progress for some time to come. This whole community is profoundly grateful to you Kristen for working so hard in keeping us together by providing us with a place we can call home.

Glenna discussed the very viable option of sufferers working from home with their own eBay Store. There have been a few people expressing interest in working from home to avoid the social tensions they have been encountering in their respective jobs as a result of their uncontrolled body odor. Glenna very enthusiastically agreed to be interviewed so that we may post it in this blog. She offered to research information for this interview to help anyone interested in pursuing this job opportunity.

Arun told us about the Christmas Meet-up in London that they had the day before. He was so moved by the experience of having met four new members and six others from previous meet-ups. They discussed how our Group seems to have a higher incidence of certain disorders such as Irritable Bowel Syndrome, Dyspepsia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivities.

Arun expressed his concern about the absence of sufferers in our group from Asia and other continents. He told us that in one of his previous visits to Asia, he posted an add in the local paper asking sufferers to contact him, and he was amazed at the number of very desperate responses he received. We discussed how there may possibly be a language barrier that prevents greater participation from the people in Asia and other continents in our community. We struggled with thoughts of somehow reaching all sufferers throughout the world, knowing that it might not be attainable for the time being.

We wished Arun a heart-felt bon voyage as he leaves Tuesday for Asia. He assured us that he will be in communications with us in our forum, the current one and the new one, and that he will try to set up impromptu conference calls for us to join him in every now and then. Have a great and safe trip Arun!

Metabolic body odor information for health experts

This post will be used to compile information in order to persuade any interested medically-based experts and/or physicians about the concept of metabolic body odor. It may also be a good reference link for any readers wanting to convince a health worker of the concept. Mainly it will be about metabolic body odors other than trimethylaminuria, but may include TMAU links in order to convince readers of the concept of untreated metabolites circulating in the main blood circulation (especially with regards the probable number of sufferers). It will be updated as needed. For any interested parties reading, the main type of metabolic body odor type seems to 'gut-smells' body odor, although it can vary even from that. What is known on the forums mostly as 'Fecal body odor'.

3.8% fail the TMAU urine test. pubmed paper 1996
smell of schizophrenia
Neonatal with encephalopathy and later a pungent cabbage odor. H2S and methanethiol in urine. Makes full recovery. (Anecdotal paper:1997)
Portal shunt in girl. TMAU reported as only symptom
Number of trimethylamine cases in random international samples
Dimethylglycinuria. 1st (and only ?) reported case
Orphanet on TMAU: The prevalence is estimated to be approximately 1 %

Arun tells us about the London Meet-Up

Well, let me tell you guys a bit about the Meetup. I arrived at 'All Bar One' (pub/restaurant) just before 12pm and within a few minutes I was pleased to meet B, a member who had been absent from our meetups for some time as he lives a bit further away. We spent a little time catching up with what we had done since we last met.

Then a new Group member arrived from Paris (!) just for the day. He told us it took him just 2 hours to come by train through the Channel Tunnel. Me and B remarked how it took us nearly that long just to come the short distance from where we lived. The French guy came because I found a French message board on Halitosis and posted details about our meetup on it:-

http://www.atoute.org/n/forum/forumdisplay.php?f=18

The message I posted was probably largely incomprehensible as it has been years since I studied French and my vocabulary is largely confined to phrases like 'Je t'aime'

Next came a lady who had attended our meetup once previously (in September). She came with another new member I had introduced since they were coming via the same train station. Since the new member had already been chatting with this lady, she didn't feel so much the new member at the meetup.

Anyway, within a short while, there were already 8 of us drinking in the Bar. B told me he would like to 'eat Indian' and I asked him if he could rephrase that

We found a lovely South Indian restaurant called Woodlands in nearby Piccadilly:-

http://www.woodlandsrestaurant.co.uk/

Well a lot of us had Dosa, a kind of South Indian Pancake stuffed with potato. The food was absolutely delicious. Another new member joined us in the restaurant and we joked how the curries might make our breath smell of onions (chance would be a fine thing! )

After the meal, we returned to Leicester Square and met up with our 10 th member. We sat in a café overlooking the Square and had cocktails. The square had fair-ground attractions and all the surrounding trees’ branches were covered in glistening green lights.

There was a magical feeling in the air, it had kind of like a Disney quality with sparkling specs of silver awash. Just then, a huge army (perhaps 100) of red-robed Santa Clauses arrived, some were female Santas with open robes sporting the most daring of bikinis. I took my glasses off as they seemed to be steaming up; Christmas had indeed come early!

The whole day was largely a social event but we had discussed how our Group seems to have a higher incidence of certain disorders such as Irritable Bowel Syndrome. Dyspepsia, Chronic Fatigue Syndrome and Multiple Chemical Sensitivities. For instance one of the new members told us how his odour seemed to start at exactly the same time as the onset of his Irritable Bowel Syndrome.

Another new member told us how her only symptom was a most pervasive foot odour which her husband couldn’t detect at home but her work colleagues always could. Interestingly, surgery (lumbar sypathectomy) had totally resolved the odour in one foot but it still remained in the other foot!

Another member told us how she had recently been tested positive for Secondary Trimethylaminuria and asked about the treatment options. I pointed her to the NIH protocol and I mentioned to her that we hope to refine this even further with experience from our future Patient Database. The members had diverse conditions and had tried a diversity treatments, mostly without success.

Unfortunately, I can not post up any pictures of our meetup for you guys as we have a no-photography policy at the UK meetups. One of the new members did ask if he could take a movie of us on his mobile phone but we explained this rule has been introduced to preserve confidentiality, especially for new members who are likely to feel more guarded in their first meetup. I would have allowed myself to be photographed for the group but I put on a few pounds in the winter time as I’m too lazy to go to the gym when it’s dark so early.

Out of the 10 members who attended, 4 were new members. 6 men and 4 women attended the meetup and our ages varied from early 20s to 60s. With 10 people present on 2 adjoining tables it was often difficult to hear what the distant members were saying and we invariably ended up chatting in 2 separate groups. However, everyone seemed to feel very comfortable at the meetup, even the new members.

Most of us decided to keep in email contact with each other through me. Many made new friends, especially those living close to them. I encourage every member to have at least one email buddy from the group. Many have have found this buddy contact helpful.

I would encourage all members to investigate ways of arranging group meetups near them. This is about a lot more than picking up useful tips, this is about a kind of emotional healing/ bonding.

Arun

Conference Call Tomorrow with Arun

Tomorrow is our last scheduled conference call with Arun before he leaves for Asia. He will be organizing impromptu calls while he’s in Asia, but will have difficulty joining us in our regularly scheduled calls at 2:00p.m. every other Sunday because of the time difference.

He’ll have all the news about their meet-up today in London!

Please join us in wishing Arun bon voyage!

Guys,
Today we are having our UK XMas Meetup in London 12pm onwards and I would love to tell you guys about it at our Conference Call on Sunday.

This will be the last regular call I will be attending for 4 months (Dec 16th-April 16th) as I am travelling around Asia on Tuesday. I hope to arrange impromptu calls periodically (I will advertise these on the message board) and I hope a few of you will be able to join in.

By the time I get back from Asia, we will already have 2 months of fresh postings on our new site and you guys across the pond will have a new president!

I will miss our MSN site as it has served us for many years and through a variety of transitions and management (it was once a part of the MSN Hyperhidrosis site). However, our new site will have Multiple Message Boards just like MSN!

I am also keen to explore a link with Messenger so we can chat additionally to the conference calls. I think the move away from MSN is fortuitous because the absence of a Message Search facility on a site like this is just too great a handicap.

Well, I hope loads of you guys are able to make it to my last Conference Call before I fly out. Catch you Sunday hopefully!
Arun
13DEC08 12:15AM/EST

Conference Call
Sunday, December 13th, 2pm EST.
USA-based : (712) 432 1620
access #: 391629#
see sidebar for full details

Arun's update re: UK London Christmas meet-up : 13 Dec 12pm

Hi guys, it's Arun here. I've got an urgent announcement about our UK Christmas Meet-Up. We're changing the venue to All Bar One Restaurant/Bar, in Leicester Square, London, as the other place wouldn't let us book a table outside, and that's really important for our condition. I want you all to feel comfortable after all. The time of the Meet-Up stays the same at 12:00p.m., Saturday, 13th of December. I'll have my mobile with me on the day, and the number is 07984-295-559, so please make a note of that. Do come along, and pull a cracker, and have a drink with us. Bye 'All Bar One' in Leicester Square

Saturday London pilgrimage : are you going ?

Diagnostic Methods for TMAU used in Laboratoire de RMN, Hôpital Saint-Louis, Paris

In this article (2002), Dr. Michel Eugène describes the diagnosis criteria for TMAU and for the differential diagnosis from dimethylglycinuria used in Laboratoire de RMN - Exploration fonctionnelle, Hôpital Saint-Louis, Paris. Dr. Eugène states that, "The prevalence is estimated to be approximately 1 %, but is difficult to evaluate due to poor clinical awareness of the disorder."

Whenever it is available, a proton NMR spectroscopy is used in this lab, as it is the preferential method of diagnosis because it enables simultaneous measurement of urinary TMAO and TMA, and the determination of the ration TMAO / ( TMAO+TMA). It is a "...fast method which does not require any sample preparation, and enables the detection of any molecules whose concentration is higher that 10 μmolar."

The ration TMAO / (TMAO+TMA) is 96± 2% in unaffected patients following a normal diet. A drastic decrease in this ratio is observed in patients homozygote for trimethylaminuria. But an oral load of 600 mg of TMA is required to distinguish between rations of unaffected patients (95±2%) and heterozygote patients (76±3%).

This 2002 trimethylaminuria paper by Dr Michael Eugene whilst working in a Paris hospital is of interest because it gives a 'French' view of TMAU testing. Perhaps he is the 'TMAU expert in France' (not that difficult because there are so few doctors worldwide that are interested). He seems to be well read on the TMAU papers, e.g. knowing that it was recorded at the 1st TMAU Workshop that 1% could be affected. It is interesting to note the 'parameters' he has gone for with the testing. For the urine 'challenge', he has gone for 600mg of trimethylamine (TMA). All other well-known testers either go for a 'choline challenge' or a 'diet challenge'. It could be argued that the 600mg TMA test is the best, mainly because, if you have a simple trimethylamine-challenge oxidizing flaw, you can't pass this test. With the choline challenge test, they are relying on gut bacteria to change it to TMA, much like how yeast turns sugar into alcohol. If someone who done the choline challenge test had plenty of TMA-Oxide in their sample, then their FMO3 enzyme got a good workout. If there was little TMA/TMAO, not enough TMA was produced. The 600mg Trimethylamine test was originally suggested in 1989 by Dr Stephen Mitchell, Dr Smith et al of London, to detect 'carriers'. Dr Eugene is using it for all who do the test, and basing their diagnosis on the % levels produced. He also tests for dimethylglycine in the sample.

Points of interest:
His 'normal' level is very high at 96± 2%.
He expects 'carriers' (heterozygotes) to be around the 76%-95% range. In practice, perhaps 'carriers' around 76% can have transient smell issues.
He uses the 600mg trimethylamine challenge for the urine test.
He tests for dimethylglycine in the same test
He prefers using a proton NMR spectroscopy for testing

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http://www.orpha.net/data/patho/Pro/en/Trimethylaminuria-FRenPro10358.pdf
http://www.orpha.net/data/patho/GB/uk-FOS.pdf

Paper on 600mg trimethylamine test 1989 : http://www.ncbi.nlm.nih.gov/pubmed/2501587

New Irritable Bowel Syndrome online Support Group on MDJunction.com

We have been approached by Michelle who volunteers to help with the new 'Irritable Bowel Syndrome online Support Group' forum on mdjunction.com, introducing their group to us and inviting us to visit their site. She tells us that their Support Group is a new addition to mdjunction.com which is a free website for online support groups. MDJunction.com has many groups who serve thousands of people everyday. She also directs us to Wikipedia to find a short and excellent description of IBS.

Here's a message from Michelle:

My name is Michelle and I volunteer to help spread the word about a new free Irritable Bowel Syndrome online support group.

As I know this falls within your interest I thought that you might want to help us in the quest to reach as many people as possible (the more people know about the group the better help they will get). You can support us in many ways (not financially): telling people you know, linking to it, writing a blog or forum post and participating in the group discussions.

Your help is much needed and any support will be most appreciated.

You can check out the group at: http://www.mdjunction.com/irritable-bowel-syndrome .

Have a great day,
Michelle

Baby with a portal shunt and later trimethylaminuria

http://www.ncbi.nlm.nih.gov/pubmed/9069234

A case of congenital portal-systemic shunting due to an intrahepatic connection diagnosed by ultrasound scanning and color Doppler in an 8-month-old girl is reported. She began to manifest trimethylaminuria 3 years later. At 7 years of age, she is asymptomatic without therapeutic measures except for diet. This is the seventh reported case and the third in a child to our knowledge.

This paper from 1997 is a case study about a baby girl who was diagnosed as having a hepatic portal shunt. This means her absorbed gut fluid (good and bad) is going directly into the systemic blood system unfiltered. Normally the absorbed fluid from the gut goes into the portal vein and then is carried to the liver to be filtered (often by the P450 and FMO3 enzymes etc). In her case there is a connection between the portal vein and the systemic system, so it bypasses the liver. This means her systemic system is subject to 'untreated' gut blood.

They say around age 3 she developed trimethylaminuria but it could be controlled by diet. One point to remember is that probably her liver metabolizing enzymes were normal. However, who knows what the girl would say what she smelt/smells of ? She would be perhaps around 19 now.

Another interesting popint is that medical students will be taught that someone with a portal shunt will be likley be on their death bed, whereas she seems to be fine. They say this is the 7th reported case in pubmed. Again proving the theory that people can have all sorts of gut metabolites in their systemic system and be 'healthy'.

It's very unlikely that most sufferers of metabolic body odor (including fecal body odor) have a portal shunt.

Lucas Turin biophycist specialising in perfumery, talks in 2005

This lecture from the TED Talks site is about the opposite spectrum of smells this blog is interested in... nice smells (perfumery). But it's a great explanation of how we perceive smells. Dr Luca Turin is one of the most respected biophysicists in the perfumery business. There are 2 theories as to how we perceive smells: One is the 'lock and key' theory, which is the traditional 'accepted' theory, where a (smelly) molecule 'locks' on to a receptor on our nose and the molecule shape is recognised by the brain. Dr Turin is associated with another theory, the vibrational theory, where the receptors perceive the smell from the particular vibration of the smelly molecule. He starts off the lecture by infusing the whole auditorium with just 400 molecules of a perfume, giving you an idea of the power of many compounds at very low levels. Like many theories, Dr Turin did not 'discover' the vibrational theory. One or 2 researchers had hypothesised it decades ago, but Dr Turin has widely promoted the theory over the last 10-15 years.

http://www.ted.com/index.php/talks/luca_turin_on_the_science_of_scent.html

Neonatal with a cabbage smell: and the background of how many 'lesser' health problems are 'discovered'

A lot of health problems depend on twists of fate and luck, rather than any organised route of deduction, to get established. It's interesting to compare this case, to the establishment of trimethylaminuria as a metabolic body odor diagnosis.

In this case, the neonatal had encephalopathy, and only later developed a "cabbage-odor". Through a thorough testing of urine organic acids which involved special equipment to detect volatile sulfur compounds, they discovered high levels of hydrogen sulfide (the chemical in stink bombs) and methanethiol. The baby went on to fully recover and their theory is that it wasn't the cause of the encephalopathy but may have contributed. They suggest the smell was caused by overgrowth of some abnormal colonic bacteria. This was published in 1997 (a pediatric case), but somehow doesn't seem to have been picked up on.

neonatal with a "cabbage-odor" : pubmed case study 1997

Full paper of 'neonatal with a cabbage odor' case study

Similarly, trimethylaminuria seems to have first been reported by a pediatric unit(?). The 6 year old girl had serious health problems from birth.

For whatever reason, today the TMAU urine test is likely the only Volatile Organic Acid test offered to metabolic body odor sufferers (if they are lucky enough to find a tester), although dimethylglycinuria also has seem to have caught the attention of a few TMAU testers, basing it on one paper in pubmed.

The OMIM entry for TMAU gives the following quote to the 'founding' of TMAU as a diagnosis

Humbert et al. (1970) first used the terms trimethylaminuria and fish-odor syndrome to describe a 6-year-old girl who intermittently had a fishy odor. She also had multiple pulmonary infections beginning in the neonatal period, the clinical stigmata of Turner syndrome but normal karyotype, splenomegaly, anemia, and neutropenia. Her urine contained increased amounts of TMA. In the same patient, Humbert et al. (1971) found defective membrane function in platelets, neutrophils, and red cells, and Higgins et al. (1972) found deficiency of trimethylamine oxidase by liver biopsy. Calvert (1973) noted that the features in the patient of Humbert et al. (1970) were those of Noonan syndrome (163950). He studied a clinically identical patient but found no trimethylaminuria with or without loading with trimethylamine. Witt et al. (1988) included the patient of Humbert et al. (1970) in their series of cases of Noonan syndrome with bleeding diathesis.

OMIM entry for trimethylaminuria

Humbert et al seem to have a connection with the University of Colarado health sciences center, which may exlain Dr Fennesseys connection with TMAU. Dr Fennesseys lab is by far the biggest TMAU urine tester for Americans who have tested so far. He is also a graduate friend of Dr Preti of Monell Chemical Senses Center.

If society took a more thorough look at body odor and halitosis, you have to wonder what they would discover and in what time ? You would think a starting point would be a testing of all malodourous volatile organic compounds in urine, rather than strictly looking for a few. FMO3 deals with many sulfides and amines, many of which are smelly. Now with the internet, the search for answers can be 'patient' led, both in lobbying the established system, and if need be then looking for answers in an organised way themselves, rather than waiting for random answers from pubmed, in the hope someone will post a study.

Interesting quotes from the mentioned paper:

A baby presenting with a neurological disturbance and an abnormal body odour must be
investigated urgently for a possible inherited metabolic disorder. Tests were all negative in the case reported. Eventually methanethiol and hydrogen sulphide were identified as the cause of the malodour.They were probably produced in grossly increased amounts in the colon by bacterial fermentation due to very unusual circumstances.

On day 12 there was an abnormal smell around his incubator which pervaded the nursery, and for the next three days his urine had asharp, pungent, cabbage-like smell. This then disappeared.Until day 13 he was maintained on nil bymouth, fed parenterally, and given intravenous antibiotics (metronidazole, flucloxacillin, andpiperacillin, later changed to ampicillin). By day 18 he was feeding and handling normally. At 11 months of age he was developing and growing normally. He has recurrent wheeze as does his 3 year old brother.

Attempts toidentify the malodorous compounds in urineby headspace gas chromatography-mass spectrometry (GC-MS) using standard hospital equipment failed. However, using GC with a dedicated sulphur chemiluminescence detector
(Sievers 350B detector), large amounts of methanethiol (methylmercaptan, CH3SH) and
hydrogen sulphide (H2S) were found (fig 1).

There are three sources of methanethiol in the body. It is produced by the liver during degradation of methionine by the transamination pathway. Production is increased after methio-
nine loading, in patients with hypermethioninaemia due to an inherited defect and in liver
disease (controversial). Secondly, it is produced from sulphur amino acids by fermentative bacteria in the colon, often with H2S and possibly ammonia. Thirdly, it is formed within
intestinal cells by methylation of H2S absorbed from the colon. Increased liver production is unlikely here and would not have accounted for the H2S found. The compounds were probably produced in the colon. Bleeding into the bowel would have supplied sulphur amino acids, and
use of broad spectrum antibiotics may have led to unusual colonisation by a fermentative
organism.

The compounds were probably present in the urine because of faecal contamination, but no bacteria were cultured from the malodorous urine collected on day 14. The alternative is that they were absorbed from the colon (demonstrated in rats) and then excreted. The problem with this explanation is that absorbed methanethiol is converted rapidly to disulphides and sulphate by the liver and perhaps blood cells. If absorbed compounds were the source they would have to have escaped hepatic detoxification. The only reported patient with methanethiol in urine had
massive hepatic necrosis. In the case reported here liver function tests were normal. On the
other hand, closure of the ductus venosus could have been delayed, with diversion of por-
tal blood from the liver to the systemic circulation.

The baby’s encephalopathy was almost certainly caused by a transient metabolic
abnormality. There was no serious hypoxicischaemic episode, infection, or inherited
biochemical defect to explain it. Hyperammonaemia (from the gut?) cannot be excluded as
plasma ammonium measurement was delayeduntil day 14 and was then near our upper
acceptable limit. Both H2S and methanethiol are neurotoxic. In rats they cause coma and
methanethiol may precipitate respiratory failure. Brain toxicity of methanethiol is
enhanced by ammonia and small amounts of octanoic acid, indicating synergy between these
compounds. By the time the odour was noticed, the encephalopathy was well advanced, suggesting that the thiol compounds were not primary causative agents. They mayhave contributed, perhaps in synergy with ammonia, if high blood concentrations were
achieved.

Few clinical laboratories have instruments to detect volatile sulphur compounds. A
screening test for H2S in gas from malodorousfluid (lead acetate strip, BDH-Merck, Poo-
le,UK) would help to exclude an inborn error.

Synopsis of Sunday's conference call by JMF

For anyone who missed the conference call they were very much missed. Here are some important highlights of the call.

Well firstly, Arun, our resident scientist was on the call Sunday. For those who don’t know it, Arun will be away for 4 months in Asia, so this is one of the last two calls he will probably be on till after that time. You still have one more opportunity to talk and listen to Arun this coming Sunday December 14th.

Arun touched on a number of topics, the first is what will happen once our stay on the MSN board ends? He informed us that he has bought a domain and that Kristen and her boyfriend will start working on the site. The site is not up and will not be up until probably after February, but it will be something to look forward to. The new site will consist of a database to hold the data from his surveys. It will have somewhere for us to upload videos and a section for our corporation and support group. Please be at our next conference for more details.

He also touched on the success of his most recent survey. A couple of years ago Arun did a survey and he only received 7 responses. And this time around, he had 98 responses. With his effort of spreading the word of the survey they received much success. He has shown this data to Dr Lachman, our consultant in metabolic medicine, whom took time to answer a many questions. We thank you Dr. Lachman.

But, Arun was going on about the importance of these surveys and to the research in getting an understanding of our conditions. In the future we need to get at least 120 replies to these surveys, so everyone’s participation is necessary. The more we participate, the more insight we will have into our condition, triggers to it, and how we can manage it.

As well, Mrs. Blog herself was on, our very special Mrs. Maria, to give us information on our upcoming Meet-up. She and Mr. Arun created a message board to discuss the trip. On this board will be up-to date information. For everyone coming it is best to go on the strand and tell us whether you will want to stay solo, share a space, etc. We need to get a number of who is coming and living arrangements, because there are some who would feel it would be more economical to split condos.

As well those that want to drive down please come on and connect on this strand so that you pick up people or get with others either farthest west going east or farthest north. Or for those that want to take the bus or train and meet at a location than drive down. This board, on the MSN will be there for all of these things.

We will be posting possible joint stay options, however we would advise you also look and see what you like as well and post it on the board in terms of condos so that we can look them over for you guys. I know many of you will be coming and we want things to go smoothly and that you are happy with your accommodations.

Maria and I will be here to answer any questions you may have. If anyone has any other question go to the MSN site or reach me at nowiknowtmau@hotmail.com. I hope that I am able to hear from all of you who were unable to make to call. I also hope you guys will be on the call to wish Arun a fond farewell. THE NEXT CALL WILL BE TAKING PLACE ON DECEMBER 14TH, HOPE TO HEAR ALL YOU THERE.

Jess