I would like to add another personal opinion; I believe that sun
exposure on a daily basis of about 1/2 hour may be beneficial in
curtailing this condition. The ultraviolet rays in sunlight react
with the cholesterol in the skin and produce the hormone known as
vitamin D. It is the egosterol component of cholesterol that produces
this reaction. Many hormones are produced buy this process. If you
elect to experiment in this area, please report your experiences as
to whether it helped you or not.

As I said before, I believe that this condition is curable. I believe
that it is totally an endocrine imbalance that produces the disease.
There may be a genetic connection but I believe that the connection
is only a tendency and not a situation beyond the control of the
person so afflicted.

I believe that there are no incurable diseases, just incurable
patients...

BTW: Your English is excellent based upon your spelling. I am amazed
by the vast number of people in the world that have done so well in
learning this language which is obviously foreign to them. I for one
know only English. What counrty do you live in?

--- In neurofibromatosis2@yahoogroups.com, "Zubair Aslam"
<zubairaslam1979@...> wrote:
>
> well thanks again for the reply
> and far a amature researcher...this is a lot...frankly spekaing it
seems
> purely professional
> thanks for the explanation
>
> On Tue, Oct 21, 2008 at 6:44 PM, comdyne2002 <comdyne@...> wrote:
>
> > I do not use my name on the internet. I am not a doctor but am
an
> > amateur researcher specializing in the use of moving energy in the
> > correction of metabolic imbalances which are largely responsible
for
> > most disease conditions. Diseases come from within the organism.
It
> > is the terrain of the body, ie., its chemical balance that
determines
> > whether or not a disease will develop. Diseases of the skin are
> > mostly due to toxic residues of the metabolic processes that are
> > unable to be adequately excreted through the digestive elimination
> > channels and will seek to escape the body via the skin. Few skin
> > conditions ever respond to topical treatments as most are
systemic in
> > nature as Von Recklinghousen obviously is.
> >
> > It is likely that this disease is hereditary. Not by reason of
some
> > defective gene but rather weakened or less robust specific
endocrine
> > organs which do have a tendency to characterize the offspring
having
> > said weakness being passed on. Many experiments have been
conducted
> > over the years that generally bears this out.
> >
> > Dr. Jules Samuels died many years ago. He wrote several highly
> > technical books based upon his clinical experience in treating
many
> > diseases successfully by focusing energy on the various organs of
the
> > endocrine chain. Although he never had a patient with this
particular
> > condition, he theorized that it would respond to endocrine
balancing.
> >
> > I believe him to be correct and if I had this condition, I would
seek
> > out practitioners who practice bio-identical hormone treatments
for
> > it is in the balance of the endocrine system where the answer to
this
> > disease will be found. I do not recommend obtaining Dr. Samuels'
> > books as there is only a sentence or two regarding this particular
> > condition and I have already summarized the gist of it for you.
> >
> > > hi comdyne (i do not know exact name),
> > >
> > > nice reply and pretty much technical...i do not understand the
> > technical
> > > terms but can understand that you are a doctor or some thing...?
> > >
> > > and for treatment the docs (dermatologists) i have met say there
> > is'nt any
> > > cure to this and nf1 happens by chance to 1 out of around
> > 40000...may be i
> > > need to talk to neurologist...
> > >
> > > plus another thing about which i am concerned is that i read
> > somewhere if a
> > > person who has nf1(male/female - i am a male), there are 50%
> > chances that
> > > his/her children will have it.
> > >
> > > is it true ?
> > > any way as the chances can be reduced ?
> > >
> > > and you mentioned abuyt dr.sameul, he has got any website etc
> > > please do reply ?
> > >
> > > thanks
> > > zubair
> > >
> > >
> > >
> > > On Tue, Oct 21, 2008 at 9:23 AM, comdyne2002 <comdyne@> wrote:
> > >
> > > > I think the key to correcting or perhaps curing this disease
is
> > to
> > > > look into the endocrine system. An imbalance between the
hormones
> > > > secreted by the 'system' has a profound effect upon all
functions
> > of
> > > > the body organs, the skin being the largest of them all. There
> > are a
> > > > few doctors who provide testing and supplemental
enzyme/hormone
> > > > treatments that are intended to restore normal endocrine
balance
> > in
> > > > the body. I am convinced that the answer will be found by
> > balancing
> > > > the secretions of this critical body system. I do not believe
that
> > > > infectious organisms play any major role in this disease but
may
> > be
> > > > present as a result of it. I also do not believe that there
is a
> > > > genetic condition other than weak endocrine tendencies which
are
> > > > genetically transmitted that would make the offspring more
> > > > susceptible to the development of various conditions but to
blame
> > the
> > > > condition solely on heredity makes a cure impossible in the
minds
> > of
> > > > researchers and thus diverts their efforts to other unrelated
> > areas
> > > > of research effectively closing out any possibility of an
> > effective
> > > > treatment ever being found. Even if one believes that the
disease
> > is
> > > > simply fate and thus beyond control is futile thinking and
> > counter-
> > > > productive. Dr. Samuels believed that he could cure the
condition
> > by
> > > > stimulating the endocrines with high frequency diathermy.
> > Although he
> > > > never treated the condition, he was confident that it would
> > respond
> > > > as the condition was similar to other diseases that he
> > successfully
> > > > treated using said technique.
> > > >
> > > > I do not have this disease; just for the record...
> > > >
> > > >
> > > > --- In neurofibromatosis2@yahoogroups.com<neurofibromatosis2%
40yahoogroups.com>
> > <neurofibromatosis2%
> > 40yahoogroups.com>,
> > > > "Zubair Aslam"
> > > > <zubairaslam1979@> wrote:
> > > > >
> > > > > hi jhon,
> > > > >
> > > > > thanks for the reply and yes it was good...lolz...
> > > > > well the excersaie thing was said by millitary doctors,
> > actually my
> > > > nf1 was
> > > > > diagnosed when i signed for army. during the medical they
told
> > > > me what
> > > > > nf1 was and how it can increase under extreme conditions at
> > > > millitary
> > > > > acaedmy for example they make you stand in snow fall and
then
> > > > shower you
> > > > > with water and during this activity you are just wearing a
> > > > underwear so
> > > > > under these conditions my mind and body wont cooridnate
properly
> > > > and nf1
> > > > > might hit me hard....
> > > > SNIP
> > > >
> > > >
> > > >
> > >
> >
> >
> >
>