Efforts toward BO awareness in medic... 
mpdela
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Hello everyone,
In response to wintergatheror's posting 8 days ago entitled maybe starting a petition in regards to this problem. , I wrote the following posting. I would love to hear everyone's opinion regarding this matter. Please try to post yours, the more postings the better.
Here's a copy of my response to wintergatheror's post:
Hi Wintergatheror,I think your efforts to bring this Body Odor problem to the medical establishment, education, advertisements, and understanding is very commendable and worthwhile undertaking. As I mentioned in my previous posting, I know that scientists need to test people to get a diagnosis to try to find a cure to the various causes of body odor, and that there is very little funding for this research. Unfortunately, the whole medical system in the U.S. seems to be asking the people who suffer excruciating emotional pain on a daily basis, and frequently for years, to willfully continue with the odor, even when it could be controlled, and to spend a lot of money to see if sooner or later it would be diagnosed – with no cure in sight! And also unfortunately, in the UK and other countries that have socialized medicine, the doctors don’t pursue testing patients because they consider it cosmetic medicine. I can’t imagine that having trimethylamine (with a pH of 9.8) in one’s blood and urine, or to not breakdown protein properly, as Dr. Arun [scientist42] explains, to not be somehow detrimental to one’s health! It seems that all doctors sense the psychological implications when they all refer people complaining of body odor for psychological treatment. Unfortunately, this is just putting a band-aid on the problem, and not addressing the cause of the problem.
It is essential that we do all possible to heighten awareness of the medical community, including worldwide universities, and any other entity that can support the research of these underlying MEDICAL CONDITIONS associated with body odors and its psychological impact. But how do we do this? People with BO, especially severe BO, tend to suffer from depression and/or anxiety, and tend to withdraw from society feeling vulnerable and impotent – definitely not combative in nature or even proactive in regards to aggressively supporting a cause. You can see this by the lack of support and enthusiasm you got when you suggested this 7 days ago. These underlying MEDICAL CONDITIONS PSYCHOLOGICALLY PARALYZE its victims! It isn’t that people in this forum don’t wish that things change, it’s that depression is paralyzing.
When writing a petition, you first would need to determine to whom we would address it. I don’t know what country you’re in, but I had sort-of begun making contacts here in the U.S. On March 3, 2008, I wrote to the Genetic and Rare Diseases Information Center, Gardinfo@nih.gov to ask them about any future workshops on Trimethylaminuria, since the last one was in 1999. This is what they sent me:
Subject:
Trimethylaminuria Date: Mon, 3 Mar 2008 15:52:35 -0500 From: ".Gard (Genetic and Rare Diseases Information Center)" <Gardinfo@nih.gov>
Dear Ms…,
You recently contacted the Office of Rare Diseases to inquire about upcoming workshops on trimethylaminuria. Your request was forwarded to the Genetic and Rare Diseases (GARD) Information Center, a service funded in-part by the Office of Rare Diseases.
Please contact GARDinfo@nih.gov or call 888-205-2311 if:
- You are not set up for Internet access and would like to have the information mailed to you. Please remember to provide us with your mailing address.
-You have any other technical difficulties with this e-mail or accessing the links above.
Sincerely,
Lois Rednal
Information Specialist
The Genetic and Rare Diseases Information Center was established by the National Human Genome Research Institute and the Office of Rare Diseases at the National Institutes of Health to provide responses to public information requests. Information Specialists are available Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding Federal holidays), to respond to questions about genetic and rare diseases.
Telephone: 888-205-2311
TTY: 888-205-3223
Email: GARDinfo@nih.gov
Fax: 240-632-9164
Mail: P.O. Box 8126
Gaithersburg , MD 20898-8126
Important Disclaimer:
The materials provided are for informational or educational purposes only and are not intended as a substitute for professional medical care, advice, diagnosis, or treatment. This material does not represent an endorsement of any specific tests or products by the National Human Genome Research Institute or the Office of Rare Diseases at the National Institutes of Health. We cannot guarantee the accuracy, completeness, timeliness, or usefulness of the opinions, advice, services, or other information. Moreover, we strongly recommend that you seek the advice of your health care provider with any questions regarding your medical care.
I highlighted in yellow the part that talks about funding, which indicates that not only does the Office of Rare Diseases (of NIH) fund workshops, and hopefully research, but there are also other sources as well. After all, I’m under the impression that they funded the last Trimethylaminuria Workshop. It would be great if we could get them to hold another one, but this time NOT ONLY ABOUT TMAU, BUT ALSO ABOUT OTHER BLOOD BORNE DISEASES PRODUCING BODY ODOR.
Maybe you would be interested in calling Ms. Lois Rednal, GARD Information Specialist, to ask her for guidance in this matter. If I were you, would consult with her to see whether a petition is the best initial way to go, or perhaps she would have a better recommendation. If you are interested in pursuing this, please call her, and let us know what she says. Then we can see if any forum member in the UK, Asian, Indian, in fact the whole world, would like to see what central medical institution in their respective countries would be supportive of this. However, if we can first get the support and guidance from GARD, and we can use their name [with their consent] when contacting other international organizations, this would empower us and give validity to our mission so that they would take us seriously.
Wintergatheror, please keep in mind that many of us are overburdened with the psychological oppression of depression and anxiety [beginning with me], and it won’t be easy to get people with this malady moving to get things done. But keeping the goal alive may help us take short steps – one at a time, to make a difference for ourselves and our future generations.Best of luck,
mpdela
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- Re: Efforts toward BO awareness in m... #94042
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This is a reply to # 1,134,062Hi Mpdela,
Thank you for all your help. Your posts are very much appreciated. But I have to say you have excelled even your own high standards this time. I have never been more inspired or motivated by a post. There really needs to be a 'World BO organisation', and I would be quite happy to see you as BO Chief (if anyone would want that title lol)
The points I would like to make just now are :
1. I would term it (for example) 'metabolic BO', which is blood borne like you say. TMAU being only one example. The medical system needs to be made aware of the spectrum of 'metabolic Body Odor ' problems
2. I don't think this is an uncommon problem. I would guess maybe as high as 1%. The London experts on TMAU seem to suggest they expect about 1% to fail their TMAU test (the way I read their paper. Their cut-off point is 90%(?) whereas Preti has 85%(?) set, I think, and they include 'secondary tmau' and maybe have a different way of calculating the ratio)
3. the suicide rate for metabolic BO must be very high (stating the obvious for the record). Who knows how many people who commit suicide really have a metabolic BO problem that isn't identified/revealed. Psychiatrists have come up with a useless concept "olfactory reference syndrome'. I expect almost all those 'diagnosed' to really have the smell problems they describe.
4. Its pretty certain its going to affect sufferers lifestyles (being diplomatic here), and if society want to look at it in a selfish manner, they can think about the economic productivity aspect (whether the person is in employment or not, or how much their problem affects other workers productivity.)
5. Like you suggest, a sufferers bloodstream must be extremely toxic or out of balance. If the person is smelling, its the tip of the iceberg. The medical system currently expects someone smelling of fecal smells to be extremely liver damaged or near death or something.
6. I am not certain anyone needs to suffer this problem at all (I'm being publicly cautious here). An important factor could be something crazy like a vitamin deficiency, for example. I expect almost everyone to have a 'gut complaint'(which I think is a very important factor). I think of it as a syndrome, where a few factors may put vulnerable people into the 'zone' (or even normal people, given the right circumstances).
That replied email was also inspiring. I have never read a reply from someone in the medical field that sounded as if they were going to be a useful contact like that.
Thank you again. I will post more or contact you if I have any more thoughts today. Feel free to contact me if you want.
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- Re: Efforts toward BO awareness in m... mpdela
16 y
1,454
This is a reply to # 1,134,128Hi 94042,
I have laughed so much with your response! I wouldn't mind at all accepting the title of BO Chief (lol), if it means giving people with metabolic Body Odor a fighting chance to lead odor-free lives and to get a cure that not only would benefit them but also their children and grandchildren as well.
Seriously now, here are my comments to your comments. Feel free to comment on my comments to your comments to my comments(lol):
1. From this point forward, I will most certainly call it ‘metabolic BO’ because that says it all in only 2 words.
2. If only the world would join our new ‘Metabolic Body Odor Syndrome Awareness Movement’, millions of people would come out of the dark to support it and to benefit from it.
3. If people with suicide tendencies are reading these posts, DON’T GIVE UP, WE WON’T, SO JOIN US to the degree that you can. If nothing else, just join us by reading all these posts. Who knows, maybe someday you’ll find the strength to participate and join in with your support. We’d love to hear from you.
4. For fund-raising purposes, we could most certainly discuss the underlying universal social motivator – economics.
5. I guess we just have to persuade the medical community to re-evaluate their knowledge of metabolic BO not limited to extreme liver damage or near-fatal conditions.
6. I also have a tendency to believe that there are answers to some of these metabolic disorders that would promote the betterment of humanity that are not being disbursed to the rest of the medical community. Perhaps with a loud enough “INTERNATIONAL SOCIAL CRY” from this forum, the international medical community will take notice, and someone who may presently have many answers will realize that it would be personally advantageous to him/her to try to find the way to share this knowledge – if not for the betterment of humanity, then for their own personal gain. This dilemma only reinforces the need to have a ‘Metabolic Body Odor International Workshop’. I see it happening ONLY if people in this forum express support for it.
Thank you for being so supportive of this newborn effort. I hope we stay in touch.
mpdela
- Re: Efforts toward BO awareness in m... #94042
16 y
1,607
This is a reply to # 1,134,169Thanks Mpdela,
The problem is it's the most embarrassing social problem, so I don't blame anyone not posting. Forums are vital to any site, but its a very inefficient way of collecting 'wisdom', and also forces the poster to 'come out', to a degree, Which nobody should need to do with this. This one has been going for about 5 years. I think a girl set it up herself as a cry for help (fecal Body Odor . curezone must have added the other forms of BO to the title once they saw the hits). That said, I think any site needs a forum. For support they can't be beat. And some like posting. This must be the lowest poster/reader ratio of any health problem, for obvious reasons. Things like polls, at least the person can then interact anonymously and contribute to understanding. For instance the low choline diet ; say a TMAU site had a survey that those positive for the test could give an idea of how they were getting on anonymously. People shouldn't have to get involved in forums if they don't want to.
I think we need an official site and official fund, preferably under the umbrella of a trusted organisation. Webmd, as a 'bad' example. Something everyone would trust. Another idea, we also need to start persuading 'sensible' contacts in the medical world (possibly harder to find than anticipated). I'm rambling a bit now. recognition is the first stage, I suppose.
I suppose the main point is that it doesn't seem rare and so many may be suffering needlessly, and yet the medical world doesn't know.
It would be nice someday to get a politician on side, for example. Maybe we can someday all email someone that has influence, but I can't think of any.- Re: Efforts toward BO awareness in m... #94042
16 y
1,655
This is a reply to # 1,134,274I just thought, even if curezone updated their format. A forum is too one-dimensional (and the curezone format possibly not the most 'sticky' format). I think in the future forums can become the base for defining problems (from patterns) and also become the portal for solving the problems (with researchers interacting and learning and basing studies on suggestions/patterns).
- Re: Efforts toward BO awareness in m... #94042
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- Re: Efforts toward BO awareness in m... #94042
16 y
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- Re: Efforts toward BO awareness in m... mpdela
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- Re: Efforts toward BO awareness in m... #94042
16 y
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