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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. > > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn