I post regularly on Braintalk2 however this is the first thread which I wish to share with Parkinson's UK and get their position.
The following post comes from a Parky in Paris:
"Dear comrades
I want to share with you the meeting i had with you with Dr Gabriel Villafane 3 weeks ago.
Dr Villafane is a brilliant and passionate scientist
,he is in charge of the Neurology department at Hopital Lionel Vidart in Creteil (France )
they have develloped since 9 years a protocol treatment for Parkinson using Nicotine patches.
They are getting very amazing results .
There,they told me,straight in the eyes,that the MINIMUM BENEFITS YOU CAN EXPECT IS TO STOP THE PROGRESSION OF PD !!
but this is the minimum,as for many patient,pd is stopped and the symptoms are very softened and even for some cases the symptoms ARE 90% REVERSED !!(it shows inversion of the disease on the DAT-SCAN)
my jaw dropped when i heard this .
this was the first time during my 7 years journey with PD ,that an "official" neurologist was not telling me PD as irreversible and degenerative .
I was really & happilly shocked
to enter the protocol,you must be on levadopa drugs .
I am on sinemet 100/10 .I take 1 pill 3 times/day presently.
you must NOT TAKE THIAMIN (vitamin B1 ) supplement ,as it would interfere with the nicotine.eating red meat is also a big No-no .
the patches have to taken everyday & for the rest of your life. (so this is not a cure but a treatment)
it takes about 9 months ti get some visible improvments,for some people less than 9 months
Here is the protocol they gave.
to respect the timing and graduality is crucial
you must patch yourself on a different part every 24 h
those parts are :under your belly button ,on the right,then the following day left,then the following day in the end of your back on the right,then the following day on left
you must change your nicotine patch every 24 h
Nicopatch was the brand recommended,but just because of the dosage
first 3 months : 3,5 mg nicotine patch per day (so you cut a 7 mg patch in half )
month 3 to 5: 7mg "" "" "
month 5 to 7 :10 mg " " "
then 14 mg for 6 months
then 17 mg for next 3 months
then 20 mg " "
I know Nicotine has a bad health image because of the cigarettes but it has medical properties.
If you decide to consult Dr Villafane,there's 4 months waiting list,& you must come to your consultation with
-a DAT-SCAN
-recent electro cardiogram
-recent blood analysis
without these,you would have to come back & wait another 4 months
I personally have started the Nico since 2 weeks,and yes i am feeling better : )"
The parky is genuine, French so some gramatic errors, not a salesman or "hype artist". There follows a very interesting discussion from others who have tried Nicotine patches.
I am intrigued to know where PDS UK stand with regards Nicotine patches as potential treatment.
Winston.
Thank you so much for this post!
Any sign of a prog to prevent or reverse the symptoms is a boost.
So, Parkinson's research team, what do you think?
My only reservation is that there is no profit for the drug companies in this so every pressure will be brought to bear to prevent dissemination of the results to protect their massive profits.
Or am I just an old cynic??
GG
X
Any sign of a prog to prevent or reverse the symptoms is a boost.
So, Parkinson's research team, what do you think?
My only reservation is that there is no profit for the drug companies in this so every pressure will be brought to bear to prevent dissemination of the results to protect their massive profits.
Or am I just an old cynic??
GG
X
.
Hi Winston.
Firstly I note that you are intrigued to know where PUK stands on nicotine patch treatment for our condition. Might I suggest that it would have made more sense to contact our Research & Development Director, Dr Kieran Breen, for a statement on this before posting on this site. You could then have included his thoughts on the subject in your post. Clearly the correct place for queries about our organisation's position on specific claimed remedies or solutions is not a forum provided specifically for sufferers and carers - none of them neurologically trained, but all involved at a highly emotional level - to exchange thoughts and experiences.
Secondly I don't think that I personally wish to be approached by a lone poster recommending just the one "new" treatment. I would prefer that person to initially persuade my consultant neurologist that what he is recommending is valid and effective. The neurologist can then discuss with me all of the possible treatments available to me, and give me his professional opinion as to the route I should take.
Thirdly I have Googled your Dr Gabriel Villafane in France, and translated some of my findings. I note that he patented his process in 1999; I also note a figure of 2,000 euros per month being quoted, presumably on top of the private costs of a DAT-SCAN, a recent electro cardiogram and a recent blood analysis which you say the new patient must bring with them. I presume the system has not yet been approved/recommended by the UK health authorities, and that all costs will fall to the patient on a private basis, as opposed to treatment currently being provided virtually free under the NHS.
Fourthly I note similar doubts and concerns to my own in other PD forums and information exchanges. Further to queries from patients about the results of alleged product trials, many were promised copies of the subsequent official reports. Despite prompts these never materialised.
I'm sure you will therefore understand why, on this occasion, I must decline any further involvement with you, Dr Villafane or this process. However, noting that the good doctor is now embarking on pan-European expansion, I wish you both every success in the future, and a long and happy, financially symbiotic, relationship between the two of you.
Regards,
Ray.
.
Hi Winston.
Firstly I note that you are intrigued to know where PUK stands on nicotine patch treatment for our condition. Might I suggest that it would have made more sense to contact our Research & Development Director, Dr Kieran Breen, for a statement on this before posting on this site. You could then have included his thoughts on the subject in your post. Clearly the correct place for queries about our organisation's position on specific claimed remedies or solutions is not a forum provided specifically for sufferers and carers - none of them neurologically trained, but all involved at a highly emotional level - to exchange thoughts and experiences.
Secondly I don't think that I personally wish to be approached by a lone poster recommending just the one "new" treatment. I would prefer that person to initially persuade my consultant neurologist that what he is recommending is valid and effective. The neurologist can then discuss with me all of the possible treatments available to me, and give me his professional opinion as to the route I should take.
Thirdly I have Googled your Dr Gabriel Villafane in France, and translated some of my findings. I note that he patented his process in 1999; I also note a figure of 2,000 euros per month being quoted, presumably on top of the private costs of a DAT-SCAN, a recent electro cardiogram and a recent blood analysis which you say the new patient must bring with them. I presume the system has not yet been approved/recommended by the UK health authorities, and that all costs will fall to the patient on a private basis, as opposed to treatment currently being provided virtually free under the NHS.
Fourthly I note similar doubts and concerns to my own in other PD forums and information exchanges. Further to queries from patients about the results of alleged product trials, many were promised copies of the subsequent official reports. Despite prompts these never materialised.
I'm sure you will therefore understand why, on this occasion, I must decline any further involvement with you, Dr Villafane or this process. However, noting that the good doctor is now embarking on pan-European expansion, I wish you both every success in the future, and a long and happy, financially symbiotic, relationship between the two of you.
Regards,
Ray.
.
Ray,
Thanks for the response, a little hostile in tone to welcome a new poster.
Let me start by pointing out that I have no commercial interest in any PD treatment, I am a PD patient dxed at 40 around 9 years ago. If you look at Braintalk2 and before that Braintalk you will see Aftermathman has been posting for years and I am known by posters on this forum, namely Tom Isaacs, Suffolkchris and Englishcountrydancer to name but three.
If I have posted this query in the wrong place then I apologise. There are a great many sub forums and I had to choose one.
I obviously don't understand the reason for the PDS UK forums if not to share advise and knowledge, some heresay, some formal. Deborah Brooks (co-founder and executive vice chairman of The Michael J. Fox Foundation) and Tom Isaacs (CPT) post regularly on the Braintalk2 forum and seem to have no problem communicating their formal position on topics if pertinent.
I am sorry you want no further involvement with me but as I have no idea who you are that doesn't really concern me.
A lot of people I know and respect responded to this thread in Braintalk2, it would have been nice to have got something to say from PDS UK however I am beginning to wonder if it is worth the trouble, a pretty sorry state for the major charity reprenting my illness.
Neil.
Thanks for the response, a little hostile in tone to welcome a new poster.
Let me start by pointing out that I have no commercial interest in any PD treatment, I am a PD patient dxed at 40 around 9 years ago. If you look at Braintalk2 and before that Braintalk you will see Aftermathman has been posting for years and I am known by posters on this forum, namely Tom Isaacs, Suffolkchris and Englishcountrydancer to name but three.
If I have posted this query in the wrong place then I apologise. There are a great many sub forums and I had to choose one.
I obviously don't understand the reason for the PDS UK forums if not to share advise and knowledge, some heresay, some formal. Deborah Brooks (co-founder and executive vice chairman of The Michael J. Fox Foundation) and Tom Isaacs (CPT) post regularly on the Braintalk2 forum and seem to have no problem communicating their formal position on topics if pertinent.
I am sorry you want no further involvement with me but as I have no idea who you are that doesn't really concern me.
A lot of people I know and respect responded to this thread in Braintalk2, it would have been nice to have got something to say from PDS UK however I am beginning to wonder if it is worth the trouble, a pretty sorry state for the major charity reprenting my illness.
Neil.
Wow, what a hostile response Ray. There are many alternative treatments for PD that people are trying, are we only allowed to talk about those sanctioned by the PD Society? I do all sorts of things that my narrow minded neuro has no knowledge of, he is only interested in mainstream medication.
My feeling about the nicotine patches is that nicotine is a stimulant and speaking for myself, my nerves are pretty shredded already (which maybe a contributory cause of my PD) so I try to avoid stimulants. I can't get away with drinking coffee even. So I can't see how such large doses of nicotine could be good for the nervous system.
Like you Aftermathman I spend more time on Neurotalk as people seem to be a bit more open minded there, aftre seeing the reaction to your post I am tempted to stick with Neurotalk! Just a shame there are so few Brits on there...
Trixiedee
My feeling about the nicotine patches is that nicotine is a stimulant and speaking for myself, my nerves are pretty shredded already (which maybe a contributory cause of my PD) so I try to avoid stimulants. I can't get away with drinking coffee even. So I can't see how such large doses of nicotine could be good for the nervous system.
Like you Aftermathman I spend more time on Neurotalk as people seem to be a bit more open minded there, aftre seeing the reaction to your post I am tempted to stick with Neurotalk! Just a shame there are so few Brits on there...
Trixiedee
Hi.
After GG's big welcome I approached from the other angle (suspicion) to apply balance, in a sort of good cop / bad cop routine. My attitude has actually scared off a number of real con men in the past, so I'll stick with it. The genuine ones tend to stick around and back up their claims - it's not personal.
Having lost everything in the past due to money-obsessed drug companies I'm happy to play the villain.
Welcome!
After GG's big welcome I approached from the other angle (suspicion) to apply balance, in a sort of good cop / bad cop routine. My attitude has actually scared off a number of real con men in the past, so I'll stick with it. The genuine ones tend to stick around and back up their claims - it's not personal.
Having lost everything in the past due to money-obsessed drug companies I'm happy to play the villain.
Welcome!
I don't think Aftermathman was making any claims - just asking if anyone had tried a certain therapy. There are a lot of vulnerable people who might come here looking for support and advice and playing bad cop isn't very compassionate. I'm not here to promote anything but your attitude has put me off posting here.
Trixiedee
Trixiedee
Pretty weak response Ray, I am not impressed or interested by your claims to be the "policeman of the forums" and agree that you lose more than you gain by adopting such a stance.
Neil.
Neil.
Hi aftermathman, Neil/winston?
Thank you for posting about something that offers hope weather proven or not!
I am nearly a year in after DX and look out for alternative therapeutic treatments although as yet am not brave enough to embark on any of them (and i am seeing a few!) so i have decided to copy and paste anything that seems to have a possible potential into a word document called 'Parky stuff' that i can look back on in the future so that it doesn't become lost and unattainable in a thread in the pduk forum. Who knows, one day this info might get proven and i will have it available ready to hand, even if it doesn't, maybe i will get desperate enough to give one of them a try? (wouldn't it be great to get relief however briefly proven or unproven?)
Also you have involuntarily (or someone in reply did) lead me to other forum's that i haven't yet come accross or explored. So thank you again for that.
please keep posting and don't be put off by some replies as their are people like me who welcome this sort of information.
Thanks again
Diane
Thank you for posting about something that offers hope weather proven or not!
I am nearly a year in after DX and look out for alternative therapeutic treatments although as yet am not brave enough to embark on any of them (and i am seeing a few!) so i have decided to copy and paste anything that seems to have a possible potential into a word document called 'Parky stuff' that i can look back on in the future so that it doesn't become lost and unattainable in a thread in the pduk forum. Who knows, one day this info might get proven and i will have it available ready to hand, even if it doesn't, maybe i will get desperate enough to give one of them a try? (wouldn't it be great to get relief however briefly proven or unproven?)
Also you have involuntarily (or someone in reply did) lead me to other forum's that i haven't yet come accross or explored. So thank you again for that.
please keep posting and don't be put off by some replies as their are people like me who welcome this sort of information.
Thanks again
Diane
Hello aftermathman and welcome to our community
Please dont be detered from posting anything that is informative. We're all adults here and well able to decide and research any possible way to cure or anything that might make our condition easiar to cope with.
I shall certainly take the trouble to research the information you have kindly provided, and will not be led down the path of less enthuisiastic posters.
That said, I note with interest that you first registered/joined us here at pduk in 2007, why has it taken so long to post something so intersting
Kind Regards
kyloe
Please dont be detered from posting anything that is informative. We're all adults here and well able to decide and research any possible way to cure or anything that might make our condition easiar to cope with.
I shall certainly take the trouble to research the information you have kindly provided, and will not be led down the path of less enthuisiastic posters.
That said, I note with interest that you first registered/joined us here at pduk in 2007, why has it taken so long to post something so intersting
Kind Regards
kyloe
Hi all,
I'm closing this thread and reopening the issue for a discussion elsewhere.
Just to clarify the situation:
It is important that all be able to share information here on the forum. If researchers post on the forum asking for volunteers or subjects, we will normally remove these posts and ask them to go through our research team.
However, where there are posts about research or treatments being done elsewhere, we will normally leave these as these form a part of what the community is here for.
We will always remind community members that It is important to remember that the views offered here are the opinions of other users, and do not replace professional medical advice.
Always consult with a healthcare professional such as a consultant, GP or local Parkinson's nurse before stopping or changing your medication or trying new treatments.
If you are worried about claims made in a post, please do contact the community team.
I'm closing this thread and reopening the issue for a discussion elsewhere.
Just to clarify the situation:
It is important that all be able to share information here on the forum. If researchers post on the forum asking for volunteers or subjects, we will normally remove these posts and ask them to go through our research team.
However, where there are posts about research or treatments being done elsewhere, we will normally leave these as these form a part of what the community is here for.
We will always remind community members that It is important to remember that the views offered here are the opinions of other users, and do not replace professional medical advice.
Always consult with a healthcare professional such as a consultant, GP or local Parkinson's nurse before stopping or changing your medication or trying new treatments.
If you are worried about claims made in a post, please do contact the community team.