Rob,
Interseting, I tried to simplify it but this is some quotes from the
article. The FULL results appeared in the March 11 2008 issue of the
journal Molecular Therapy.
I read somewhere that testing TMAU may be easier to expirament with
because of its genetic location. There could be some real bad side
effects that may outway the treatment though.
--------------------------------------------------------------------
......The disorder that Duke University tested was one where an
enzyme can't be made (similar to TMAU??). The research created a
virus that targeted liver cells. The gene therapy replaced the
missing enzyme in the liver to fully normal levels.
The corrected genes don't transfer when liver cells divide and copy
themselves. However, the slow rate at which liver cells divide means
the treatment may be effective for many years, with only a few
boosters needed during an individual's lifetime, Koeberl said.
"This is a step along the way toward developing a curative therapy
for our patients," The key is finding funding for a years-long trial.
--- In Trimethylaminuria@yahoogroups.com, "Robert" <brovens@...>
wrote:
>
> As an example of what gene therapy can do for metabolic disorders
that
> result when the liver is not able to produce a particular enzyme
(as in
> TMAU) have a look at this story. Cut and paste the link into your
browser to
> read the article:
>
>
>
> http://www.sciencedaily.com/releases/2008/03/080312115415.htm
>
>
>
> We just have to get more research going into TMAU.
>
>
>
> Best wishes
>
>
>
> Rob
>
>
>
> -----Original Message-----
> From: Trimethylaminuria@yahoogroups.com
> [mailto:Trimethylaminuria@yahoogroups.com] On Behalf Of Robert
> Sent: Monday, June 09, 2008 11:05 PM
> To: Trimethylaminuria@yahoogroups.com
> Subject: RE: [Trimethylaminuria] Re: Hope Science DNA sequencing
>
>
>
> Hi Murano
>
>
>
> It will help us by making it quicker and cheaper to test
genetically for
> TMAU. It will enable scienbtists to test more people and so look
more
> closely at the variety of mutations that occur on the FMO3 gene.
It will
> also help researchers who want to study a large group of people
with TMAU -
> quicker and cheaper testing means the cost of research is cheaper
and when
> research is cheaper to do it is more likely to get done. As it
says in the
> article:
>
>
>
> "By mapping DNA, scientists can trace disease genes" and "if
scientists are
> to have opportunities to study disease genes in detail, and from
hundreds of
> patients, the process must be much, much cheaper."
>
>
>
> This new development has the ability to make the process 2 orders
of
> magnitude cheaper.
>
>
>
> Sometimes it's difficult to see how these sorts of developments
will help
> TMAU specifically but research does not have to be specifically
into TMAU to
> have implications for future TMAU research. Think of what's
happening gene
> therapy. The last article I posted about research described how
scientists
> had developed an artificial virus to get genes into cell nuclei to
repair
> mutations and thus overcome one of the main obstacles that has
held gene
> replacement therapy back so far - the risks associated with using
natural
> viral vectors which can sometimes themselves cause disease. Every
bit of
> research like this is another building block in the knowledge and
technology
> that will bring about a cure for TMAU. Science is cumulative -
it's like
> compound interest. The computer you are now using would not have
been
> possible without all the fundamental research that went on in
physics (for
> example) many decades ago. Now that we have computers and the www
> information flies around at a pace unimaginable until very
recently, and
> this further promotes research. It's a type of positive feedback -
the more
> research the more information there is the more research can get
done
> because we know what questions to ask. I have no doubt that a cure
will come
> in my lifetime and I'm no whippersnapper I can tell you. I want it
in my
> lifetime and so I want to promote science which alone can supply
the answers
> we need.
>
>
>
> But I'm waffling. Hope you get what I mean.
>
>
>
> Best wishes
>
>
>
> Rob
>
>
>
> -----Original Message-----
> From: Trimethylaminuria@yahoogroups.com
> [mailto:Trimethylaminuria@yahoogroups.com] On Behalf Of murano_x5
> Sent: Monday, June 09, 2008 10:00 PM
> To: Trimethylaminuria@yahoogroups.com
> Subject: [Trimethylaminuria] Re: Hope Science DNA sequencing
>
>
>
> Rob does this mean disease genes get fixed or new treatments or
> both? How it helps us? Soon I wish.
>
> --- In Trimethylaminuria@ <mailto:Trimethylaminuria%
40yahoogroups.com>
> yahoogroups.com, "Robert Brown"
> <brovens@> wrote:
> >
> > Hi all
> >
> > Here's another interesting and encouraging scientific story.
> Absolutely
> > fascinating!
> >
> > A new way sequencing DNA will make it possible to map disease
> genes in
> > large patient groups, which in turn can mean quicker
breakthroughs
> for
> > new treatments for a wide variety of diseases.
> >
> > Cut and paste the link inot your browser to read the article:
> > http://www.scienced
> <http://www.sciencedaily.com/releases/2008/05/080526165347.htm>
> aily.com/releases/2008/05/080526165347.htm
> >
> > Best wishes
> >
> > Rob
> >
>
As an example of what gene
therapy can do for metabolic disorders that result when the liver is not able
to produce a particular enzyme (as in TMAU) have a look at this story. Cut and
paste the link into your browser to read the article:
We just have to get more research going
into TMAU.
Best wishes
Rob
-----Original Message----- From:
Trimethylaminuria@yahoogroups.com [mailto:Trimethylaminuria@yahoogroups.com] On Behalf Of Robert Sent: Monday, June 09, 2008 11:05
PM To:
Trimethylaminuria@yahoogroups.com Subject: RE: [Trimethylaminuria]
Re: Hope Science DNA sequencing
Hi Murano
It will help us by making
it quicker and cheaper to test genetically for TMAU. It will enable scienbtists
to test more people and so look more closely at the variety of mutations that
occur on the FMO3 gene. It will also help researchers who want to study a
large group of people with TMAU – quicker and cheaper testing means the
cost of research is cheaper and when research is cheaper to do it is more
likely to get done. As it says in the article:
“By
mapping DNA, scientists can trace disease genes” and “if scientists
are to have opportunities to study disease genes in detail, and from hundreds
of patients, the process must be much, much cheaper.”
This new development has
the ability to make the process 2 orders of magnitude cheaper.
Sometimes it’s
difficult to see how these sorts of developments will help TMAU specifically
but research does not have to be specifically into TMAU to have implications
for future TMAU research. Think of what’s happening gene therapy. The
last article I posted about research described how scientists had developed an
artificial virus to get genes into cell nuclei to repair mutations and thus
overcome one of the main obstacles that has held gene replacement therapy back
so far – the risks associated with using natural viral vectors which can
sometimes themselves cause disease. Every bit of research like this is another
building block in the knowledge and technology that will bring about a cure for
TMAU. Science is cumulative – it’s like compound interest. The
computer you are now using would not have been possible without all the
fundamental research that went on in physics (for example) many decades ago.
Now that we have computers and the www information flies around at a pace
unimaginable until very recently, and this further promotes research.
It’s a type of positive feedback – the more research the more
information there is the more research can get done because we know what
questions to ask. I have no doubt that a cure will come in my lifetime and
I’m no whippersnapper I can tell you. I want it in my lifetime and so I
want to promote science which alone can supply the answers we need.
But I’m waffling.
Hope you get what I mean.
Best wishes
Rob
-----Original Message----- From: Trimethylaminuria@yahoogroups.com
[mailto:Trimethylaminuria@yahoogroups.com] On Behalf Of murano_x5 Sent: Monday, June 09, 2008 10:00
PM To: Trimethylaminuria@yahoogroups.com Subject: [Trimethylaminuria] Re:
Hope Science DNA sequencing
Rob does this mean disease genes get fixed or new
treatments or
both? How it helps us? Soon I wish.
--- In Trimethylaminuria@yahoogroups.com,
"Robert Brown"
<brovens@...> wrote:
>
> Hi all
>
> Here's another interesting and encouraging scientific story.
Absolutely
> fascinating!
>
> A new way sequencing DNA will make it possible to map disease
genes in
> large patient groups, which in turn can mean quicker breakthroughs
for
> new treatments for a wide variety of diseases.
>
> Cut and paste the link inot your browser to read the article:
> http://www.sciencedaily.com/releases/2008/05/080526165347.htm
>
> Best wishes
>
> Rob
>
It will help us by making it quicker and
cheaper to test genetically for TMAU. It will enable scienbtists to test more
people and so look more closely at the variety of mutations that occur on the
FMO3 gene. It will also help researchers who want to study a large group
of people with TMAU – quicker and cheaper testing means the cost of research
is cheaper and when research is cheaper to do it is more likely to get done. As
it says in the article:
“By mapping DNA, scientists can
trace disease genes” and “if scientists are to have opportunities
to study disease genes in detail, and from hundreds of patients, the process
must be much, much cheaper.”
This new development has the ability to
make the process 2 orders of magnitude cheaper.
Sometimes it’s difficult to see how these
sorts of developments will help TMAU specifically but research does not have to
be specifically into TMAU to have implications for future TMAU research. Think
of what’s happening gene therapy. The last article I posted about research
described how scientists had developed an artificial virus to get genes into
cell nuclei to repair mutations and thus overcome one of the main obstacles
that has held gene replacement therapy back so far – the risks associated
with using natural viral vectors which can sometimes themselves cause disease.
Every bit of research like this is another building block in the knowledge and
technology that will bring about a cure for TMAU. Science is cumulative –
it’s like compound interest. The computer you are now using would not
have been possible without all the fundamental research that went on in physics
(for example) many decades ago. Now that we have computers and the www information
flies around at a pace unimaginable until very recently, and this further
promotes research. It’s a type of positive feedback – the more
research the more information there is the more research can get done because we
know what questions to ask. I have no doubt that a cure will come in my
lifetime and I’m no whippersnapper I can tell you. I want it in my
lifetime and so I want to promote science which alone can supply the answers we
need.
But I’m waffling. Hope you get what
I mean.
Best wishes
Rob
-----Original Message----- From:
Trimethylaminuria@yahoogroups.com [mailto:Trimethylaminuria@yahoogroups.com] On Behalf Of murano_x5 Sent: Monday, June 09, 2008 10:00
PM To:
Trimethylaminuria@yahoogroups.com Subject: [Trimethylaminuria] Re:
Hope Science DNA sequencing
Rob does this mean
disease genes get fixed or new treatments or
both? How it helps us? Soon I wish.
--- In Trimethylaminuria@yahoogroups.com,
"Robert Brown"
<brovens@...> wrote:
>
> Hi all
>
> Here's another interesting and encouraging scientific story.
Absolutely
> fascinating!
>
> A new way sequencing DNA will make it possible to map disease
genes in
> large patient groups, which in turn can mean quicker breakthroughs
for
> new treatments for a wide variety of diseases.
>
> Cut and paste the link inot your browser to read the article:
> http://www.sciencedaily.com/releases/2008/05/080526165347.htm
>
> Best wishes
>
> Rob
>
Update: Forgot to mention that this effects Dr Preti's urine test's
also.
Hopefully the lab will be up and running again soon but it does look
like it may be more then the original week or two delay. A
recommendation is that you can wait as it is with a good facility
and your specimen is being stored properly.
If you still want to request a refund to UCHSC in Denver Colorado
simply send an email clearly stating the request for the refund.
Provide the date of the submission, your name / mailing address /
phone number. Of course, if your check has not been cashed you can
simply send in the notification request and state that you will
cancel / void the check.
Testing with DR Cashman at HBRI is still available but due to summer
slow down you would have to contact them for a time frame. Will keep
this updated.
--- In Trimethylaminuria@yahoogroups.com, "sharnsk" <sharnsk@...>
wrote:
>
> I was asked to pass this update on to anyone who currently has a
urine
> at the UCHSC lab in Denver. The delay has been extended. If you
choose
> not to wait then you can ask for a refund. If this applies to you
and
> you are having trouble reaching the lab then email me and will put
you
> in touch with help.
>
>
>
> <The lab at the UCHSC in Denver is temporarily closed for a week
or two
> <due to unforeseen circumstances. PLEASE know that if you already
sent
> <in your urine sample for testing, it will be taken care of and
will not
> <be left to lag.
>
> <We will be advised soon regarding how / when the pending
specimens will
> <be processed. Thanks in advance.
>
> <Information will be updated as it becomes available.
>
Rob does this mean disease genes get fixed or new treatments or
both? How it helps us? Soon I wish.
--- In Trimethylaminuria@yahoogroups.com, "Robert Brown"
<brovens@...> wrote:
>
> Hi all
>
> Here's another interesting and encouraging scientific story.
Absolutely
> fascinating!
>
> A new way sequencing DNA will make it possible to map disease
genes in
> large patient groups, which in turn can mean quicker breakthroughs
for
> new treatments for a wide variety of diseases.
>
> Cut and paste the link inot your browser to read the article:
> http://www.sciencedaily.com/releases/2008/05/080526165347.htm
>
> Best wishes
>
> Rob
>
Hi Sharon,
I'll follow you wherever you moderate because I think you do a great
job gathering and providing us with very valuable information. You and
many others in this forum have a great deal of experience in tmau
management, and I learn a great deal from this site. I'm glad it's the
whole migration problem has been resolved and we're back.
I'll be talking with you sometime this week.
Maria
--- In Trimethylaminuria@yahoogroups.com, "sharnsk" <sharnsk@...> wrote:
>
> Feel free to post or utilize the tool bar on the left to read the
> Files, add a Poll, Picture or Recipe in the Database. Just feel at
home
> as this is your site too. All we ask is that you treat each other as
> you wish to be treated yourself.
>
> This site will be needing a few empathetic moderators so let us know
if
> you are interested. Look forward to hearing from you and reading your
> posts.
>
> Thank you for your support and I wish it had worked out different but
> the link to this site will stay active for those sites that referr or
> utilize it as a support group.
>
> Sharon +
>
Hi all
Here's another interesting and encouraging scientific story. Absolutely
fascinating!
A new way sequencing DNA will make it possible to map disease genes in
large patient groups, which in turn can mean quicker breakthroughs for
new treatments for a wide variety of diseases.
Cut and paste the link inot your browser to read the article:
http://www.sciencedaily.com/releases/2008/05/080526165347.htm
Best wishes
Rob
I was asked to pass this update on to anyone who currently has a urine
at the UCHSC lab in Denver. The delay has been extended. If you choose
not to wait then you can ask for a refund. If this applies to you and
you are having trouble reaching the lab then email me and will put you
in touch with help.
<The lab at the UCHSC in Denver is temporarily closed for a week or two
<due to unforeseen circumstances. PLEASE know that if you already sent
<in your urine sample for testing, it will be taken care of and will not
<be left to lag.
<We will be advised soon regarding how / when the pending specimens will
<be processed. Thanks in advance.
<Information will be updated as it becomes available.
From: Robert <brovens@...> Subject: RE: [Trimethylaminuria] New Moderator To: Trimethylaminuria@yahoogroups.com Date: Sunday, June 8, 2008, 2:11 AM
YES! Maggs! That˘s fantastic.
Rob
-----Original Message----- From: Trimethylaminuria@ yahoogroups. com [mailto:Trimethylam inuria@yahoogrou ps.com] On Behalf Of sharnsk Sent: Sunday, June 08, 2008 10:31 AM To: Trimethylaminuria@ yahoogroups. com Subject: [Trimethylaminuria] New Moderator
I would love to announce that Maggie is officially a moderator of this site now. Look forward to working with her and am so glad to see that she is back on her feet and doing well.
Thanks, I always knew I was destined for better things :-)
maggie
maggie
--- On Sun, 6/8/08, Arun Nagrath <arunnagrath@...> wrote:
From: Arun Nagrath <arunnagrath@...> Subject: [Trimethylaminuria] Re: New Moderator To: Trimethylaminuria@yahoogroups.com Date: Sunday, June 8, 2008, 2:09 AM
Hey, CONGRATULATIONS Maggs! I'm glad to hear you've shot to fame and stardom after your stroke.
With you moderating Yahoo and me moderating MSN we've definitely put England back on the map! :)
-----Original Message----- From:
Trimethylaminuria@yahoogroups.com [mailto:Trimethylaminuria@yahoogroups.com] On Behalf Of sharnsk Sent: Sunday, June 08, 2008 10:31
AM To:
Trimethylaminuria@yahoogroups.com Subject: [Trimethylaminuria] New
Moderator
I would love to announce
that Maggie is officially a moderator of this
site now. Look forward to working with her and am so glad to see that
she is back on her feet and doing well.
Hey, CONGRATULATIONS Maggs!
I'm glad to hear you've shot to fame and stardom after your stroke.
With you moderating Yahoo and me moderating MSN we've definitely put
England back on the map! :)
Arun
I would love to announce that Maggie is officially a moderator of this
site now. Look forward to working with her and am so glad to see that
she is back on her feet and doing well.
Thank you Maggie.
Arun,
If it helped the world I would gladly come off my diet and routine.
The only problem is if you parachute me any were they will have
other problems if I din't wear a diaper:))
Sense of humor can be the best medicine.
Sharon+
--- In Trimethylaminuria@yahoogroups.com, "Arun Nagrath"
<arunnagrath@...> wrote:
>
> Lol Sharon, hey there are probably many untapped applications to
our
> odours.
>
> For instance, we could be the next generation for chemical warfare
> weaponry. They could get the 101st Airborne Division to simply
> parachute us behind enemy lines. They'd be waving their white
flags
> at us before we even landed! :))
> Arun
>
>
>
> --- In Trimethylaminuria@yahoogroups.com, "sharnsk" <sharnsk@>
> wrote:
> >
> > Hi Arun,
> >
> > I read the article on your web site at MSN. In researching it I
> > wondered if we could make some money off our odors by converting
> > them to fossil fuels? LOL, read below! People with TMAU are told
> > that their bodies may have adverse effects to sulfa also.
> >
> > Some how I bet Desmopressin as found in Dr Werner's paper fits
> into
> > this. You can tell I don't understand how our body manufactures
it
> > but here is a description from Wikipedia:
> >
> > Dimethyl sulfide (DMS) or methylthiomethane is an organosulfur
> > compound.
> >
> > Organosulfur compounds are organic compounds that contain sulfur
> > (sulphur). They are often associated with foul odours, but
> > ironically many of the sweetest compounds known are organosulfur
> > derivatives. Nature abounds with organosulfur compounds—sulfur
is
> > essential for life. Two of the 20 common amino acids are
> > organosulfur compounds. Fossil fuels, coal, petroleum, and
natural
> > gas, which are derived from ancient organisms, necessarily
contain
> > organosulfur compounds, the removal of which is a major focus of
> oil
> > refineries.
> >
> >
> > --- In Trimethylaminuria@yahoogroups.com, "Arun Nagrath"
> > <arunnagrath@> wrote:
> > >
> > > Bloodborne faecal halitosis which is not due to
> Trimethylaminuria
> > is
> > > due to a hitherto unresearched metabolic disorder.
> > >
> > > All we know for sure is that dimethylsulfide (DMS) is present
in
> > the
> > > blood and in the breath. For those of us who have breath and
> body
> > > odour then I believe the same dimethylsulfide is coming out
from
> > the
> > > underarms aswell. Where in the body is this DMS originally
> coming
> > > from? NOBODY KNOWS for sure!
> > >
> > > Unfortunately, most people are unaware of this information and
> > > mistakingly believe they may have trimethylaminuria. The
actual
> > > chemical responsible is dimethylsulfide.
> > > Arun
> > >
> >
>
Lol Sharon, hey there are probably many untapped applications to our
odours.
For instance, we could be the next generation for chemical warfare
weaponry. They could get the 101st Airborne Division to simply
parachute us behind enemy lines. They'd be waving their white flags
at us before we even landed! :))
Arun
--- In Trimethylaminuria@yahoogroups.com, "sharnsk" <sharnsk@...>
wrote:
>
> Hi Arun,
>
> I read the article on your web site at MSN. In researching it I
> wondered if we could make some money off our odors by converting
> them to fossil fuels? LOL, read below! People with TMAU are told
> that their bodies may have adverse effects to sulfa also.
>
> Some how I bet Desmopressin as found in Dr Werner's paper fits
into
> this. You can tell I don't understand how our body manufactures it
> but here is a description from Wikipedia:
>
> Dimethyl sulfide (DMS) or methylthiomethane is an organosulfur
> compound.
>
> Organosulfur compounds are organic compounds that contain sulfur
> (sulphur). They are often associated with foul odours, but
> ironically many of the sweetest compounds known are organosulfur
> derivatives. Nature abounds with organosulfur compounds—sulfur is
> essential for life. Two of the 20 common amino acids are
> organosulfur compounds. Fossil fuels, coal, petroleum, and natural
> gas, which are derived from ancient organisms, necessarily contain
> organosulfur compounds, the removal of which is a major focus of
oil
> refineries.
>
>
> --- In Trimethylaminuria@yahoogroups.com, "Arun Nagrath"
> <arunnagrath@> wrote:
> >
> > Bloodborne faecal halitosis which is not due to
Trimethylaminuria
> is
> > due to a hitherto unresearched metabolic disorder.
> >
> > All we know for sure is that dimethylsulfide (DMS) is present in
> the
> > blood and in the breath. For those of us who have breath and
body
> > odour then I believe the same dimethylsulfide is coming out from
> the
> > underarms aswell. Where in the body is this DMS originally
coming
> > from? NOBODY KNOWS for sure!
> >
> > Unfortunately, most people are unaware of this information and
> > mistakingly believe they may have trimethylaminuria. The actual
> > chemical responsible is dimethylsulfide.
> > Arun
> >
>
Hi Arun,
I read the article on your web site at MSN. In researching it I
wondered if we could make some money off our odors by converting
them to fossil fuels? LOL, read below! People with TMAU are told
that their bodies may have adverse effects to sulfa also.
Some how I bet Desmopressin as found in Dr Werner's paper fits into
this. You can tell I don't understand how our body manufactures it
but here is a description from Wikipedia:
Dimethyl sulfide (DMS) or methylthiomethane is an organosulfur
compound.
Organosulfur compounds are organic compounds that contain sulfur
(sulphur). They are often associated with foul odours, but
ironically many of the sweetest compounds known are organosulfur
derivatives. Nature abounds with organosulfur compounds—sulfur is
essential for life. Two of the 20 common amino acids are
organosulfur compounds. Fossil fuels, coal, petroleum, and natural
gas, which are derived from ancient organisms, necessarily contain
organosulfur compounds, the removal of which is a major focus of oil
refineries.
--- In Trimethylaminuria@yahoogroups.com, "Arun Nagrath"
<arunnagrath@...> wrote:
>
> Bloodborne faecal halitosis which is not due to Trimethylaminuria
is
> due to a hitherto unresearched metabolic disorder.
>
> All we know for sure is that dimethylsulfide (DMS) is present in
the
> blood and in the breath. For those of us who have breath and body
> odour then I believe the same dimethylsulfide is coming out from
the
> underarms aswell. Where in the body is this DMS originally coming
> from? NOBODY KNOWS for sure!
>
> Unfortunately, most people are unaware of this information and
> mistakingly believe they may have trimethylaminuria. The actual
> chemical responsible is dimethylsulfide.
> Arun
>
Bloodborne faecal halitosis which is not due to Trimethylaminuria is
due to a hitherto unresearched metabolic disorder.
All we know for sure is that dimethylsulfide (DMS) is present in the
blood and in the breath. For those of us who have breath and body
odour then I believe the same dimethylsulfide is coming out from the
underarms aswell. Where in the body is this DMS originally coming
from? NOBODY KNOWS for sure!
Unfortunately, most people are unaware of this information and
mistakingly believe they may have trimethylaminuria. The actual
chemical responsible is dimethylsulfide.
Arun
Feel free to post or utilize the tool bar on the left to read the
Files, add a Poll, Picture or Recipe in the Database. Just feel at home
as this is your site too. All we ask is that you treat each other as
you wish to be treated yourself.
This site will be needing a few empathetic moderators so let us know if
you are interested. Look forward to hearing from you and reading your
posts.
Thank you for your support and I wish it had worked out different but
the link to this site will stay active for those sites that referr or
utilize it as a support group.
Sharon +
This sounds like an easy way to look at the diet:
"A more moderate level of restriction, such as 200 to 300
mg choline per day, would provide much more variety in
the diet and would include foods from all food groups. For
example, a diet at the moderate level of choline may
include 4 to 5 oz of meat, four to five servings of fruits and
vegetables, five to six servings of bread, one to two servings
of dairy foods, adequate amounts of low-choline fats
and oils, and one dessert food each day."