hi, raj,
just received my meds from dr. paneri....before I get into the regimen,
i've questions i need answers from him..
how are you after four or five weeks...and how's ervine...
nilo

On Sun, 29 Dec 2002 14:02:02 -0400 Brightline
<[log in to unmask]> writes:
> Dear All:
>     I have to take my hats off to David Moreland for his open
> minded
> attitude.  In my understanding, that is all Dr. Paneri wants from
> us.
> Otherwise, Dr. Paneri would not have offered to treat Tom Bernadine
> with out
> charge.  However, Tom did not want to take that route and that is
> his
> prerogative.  Just ask yourself.  Would you offer to treat somebody
> without
> charge if you did not believe in your own medication?  It costs Rs.
> 500
> (roughly about US$ 11) for him to mail the stuff from India to
> North
> America.  I am sure that Dr. Paneri is aware that if Tom did not
> find it
> helpful,  he is not going to go anywhere with this.
>     A few of us are trying it out and I think it is our prerogative.
>  As I
> told you before, I thought it was worth giving a shot. I did not say
> I
> believe in it hundred percent.  And even if it gives some temporary
> symptomatic relief our money would not have been wasted.   If it
> does not do
> any good, we shall wash our hands and let you all know it  does not
> work.
> That is all there is to it.  Nobody has to "eat crow" no matter
> what
> happens.  If it reall works wonders, as claimed by his patients,
> what do we
> have to complain about?  Please hold on to your horses.  Let us wait
> and
> see.
>     What we do not realize is that the whole field of treating PD is
> still
> up in the air.  Even diagnosis of PD is onlt 75% accurate since it
> is mainly
> done by physical examination by the experts.  I read a review of
> the
> diagnostic features of PD after somebody interviewed 300 Movement
> Disorder
> Specialists and each one had different criteria for the conclusions
> they
> have reached!  In my own cae, so far I have seen 6 MDSs and every
> one of
> them gave me different verdicts!  Some say it is ET and not PD,
> while others
> say it is both PD and ET!    One said that I may have some symptoms
> of PD
> but I wasn't ready for any treament yet!  How do you explain then
> the
> presence of postural instability, drooling, cramps in my calf
> muscles,
> difficulty in getting out of my car etc?  (Did you know that nobody
> knows if
> when people with ET symptoms develop PD symptoms, is it one or two
> different
> diseases?  Unlike ET, PD was not thought to be an inherited disease,
> which
> mayh not be necessarily true; there are more genetic defects in PD
> patients
> than in ET patients.  In fact, both may be equally familial and a
> certain %
> of them may not be familial.)
>     It appears that everything goes in this field.  Think of so many
> drugs
> for PD and nothing is working for everybody.  This is because I am
> told PD
> is a 'designer disease".  The same thing appears to be true for DBS,
> the
> most advanced treatment for PD.  Even after DBS, people are still
> taking
> Sinemet and some others are still experiencing diskenesia.  Is there
> any
> course of action one can take, where one is sure of alleviating all
> the
> symptoms, leave alone cure?
>     Somebody told that we are desparate to take this direction.  Is
> there
> any one of us not desparate about what is waiting in store for us?
>     I am in full agreement with you when you say that we should all
> act-up
> now and get politically involved in supporting the cause of stem
> cell
> studies.  But, if you are waiting for the stem cell cure to come
> along and
> save all of us from misery,  think again.  First you have to change
> the
> minds of the politicians or change the government.  Then the stem
> cell
> research have to be funded and then they have to find the cure after
> a lot
> of trials.  This would take a minimum of 10 years if not more.
> Personally I
> feel this would be too late for most of us.  That is another reason,
> why we
> should hurry up and change the minds of the ignorant or irrational
> politicians.  The only way is educating them as well as the general
> public
> and also letting the know of our sufferings and how we are wasting
> our life
> because of this ailment.
>     This is no time to fight amongst ourselves and blame each other
> for any
> reason at all.  I  request that people be open minded, be
> constructive (even
> if you do not agree), and not be abusive.  I do not think this is
> the
> purpose of this forum.
>     Thank you for your time.
>     Raj
> [log in to unmask]
> *************
>
>
> ----- Original Message -----
> From: "David Moreland" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Sunday, December 29, 2002 10:41 AM
> Subject: Re: Dr. Paneri
>
>
> > Rick,
> > I guess we can agree to disagree. I don't know if dr Paneri's brew
> of
> herbs
> > and spices will effectively  treat PD but it seems like we could
> be
> > supportive of Raj, Evan and Nilo as they have opted to try it. And
> it
> > appears to be the only game in town. I am sure that they will give
> us
> > progress reports as time goes on and we will learn how effective
> it is.
> >
>
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