Author |
Topic: ARICEPT - There is hope! A cure at hand? (Read 1652 times) |
|
Stewart
New Board Newbie
it hurts, here!!
Gender: 
Posts: 45
|
 |
Re: ARICEPT - There is hope! A cure at hand?
« Reply #25 on: Mar 19th, 2002, 10:51am » |
 Quote  Modify
|
What I would like to see is some extensive studies done on Ch'ers find what triggers the inflamation, I mean we can isolate genes now, certainly we can find what causes these monsters to claw our eye and temporal lobe..It can't be that complicated ( i know, i know money money money to study, study study). In my own case, it seems almost semi logical, spring and fall attacks (change in seasons, allergen, atmospheric pressure, light in retina changes????) It's got to be one over looked "thing" that is causing this...WHAT? geez how many times have I said that at night!
|
|
 IP Logged |
|
|
|
rodolfo hecht lucari
Guest
|
|
Re: ARICEPT - There is hope! A cure at hand?
« Reply #26 on: Mar 19th, 2002, 11:03am » |
Quote Modify
 Remove
|
Just a couple of remarks on Flash's post.
On the contrary I suspect it is a cure, although maybe my english does not allow me to appreciate a "cure" as opposed to a "prophylactic treatment": in italian they share a similar meaning.
I disagree with your impression Flash: anyway this is the contrary of my existing working hipothesys, as I can say I have experienced a profound, curing impact of Aricept.
As per your further observations on the requisite of a cure vs. "the affection of the phisycal structure of the hypothalamus" I believe you are taking a rather wide shot .
Even if you were a scientist, I would have more doubts and less certainties:unless your certanties lead you somewere where pain subsides.............
The same applies to your statement on the fact that ch doesn't kill: are you sure? I think it must hurt us pretty much, deeply inside, and so many doctors now seem to believe.
How can you possibly believe you can measure the "holistic" impact of ch on the web of organs that constitutes our body?
It looks rather like a trade-off. Like Flash I believe most remedies against ch are really net negative. With the exception of injectable Imitrex, but obviously with a lot of caution on the side effects of triptans (I also tend never to go for the second shot if not desperate).
Unlike Flash I have less difficulty in appreciating the immensity of my ignorance, and therefore I am positive there are so many things I truly ignore.
Finally, 3 months would be a best case scenario: if it doesn't work you can stop after 2. If it does work, you won't stop, this I can assure you, not for the side effects anyway!
A hug to everyone, Flash included
|
|
IP Logged |
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Now, there's a quote I'm gonna use often!
« Reply #27 on: Mar 19th, 2002, 11:10am » |
Quote Modify
|
Quote:| I have less difficulty in appreciating the immensity of my ignorance, and therefore I am positive there are so many things I truly ignore |
|
Sounds like something Jack or hub would say. However, it applies to me so I am going to file it away in my folder of Life's Truths.
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
dannyboy
New Board Old Timer
Docs didn't design the machine they're working on
Gender:
Posts: 329
|
|
Re: ARICEPT - There is hope! A cure at hand?
« Reply #28 on: Mar 20th, 2002, 2:44am » |
Quote Modify
|
No ways boob, we agree on something!! .... Yeah, I'll take that page outta Rodolfo's book too.
In fact I'll take another Rodlofo if I may
"I would have more doubts and less certainties:unless your certanties lead you somewere where pain subsides............."
pain subsides ... yeah ... thats what I've been looking for
Can your doctor set up a questionnairre for us Rodolfo? Can you do it? I'm sure we'll find the poeple to hosts the site and keep us informed of the progress.
|
|
IP Logged |
Bedside manner is no substitute for a correct diagnosis - Bill Gates
|
|
|
rodolfo hecht lucari
Guest
|
|
Re: ARICEPT - There is hope! A cure at hand?
« Reply #29 on: Mar 20th, 2002, 7:50am » |
Quote Modify
Remove
|
About the doctor.
Problem is, Federigo Sicuteri is very difficult to get in touch with. He is a superstar in his field, works only out of Florence (can't blame him on that one), is probably 80 years old, and has no confidence with emails.
I kept contact with his group via email with his assistant, Maria Nicolodi, but in the last two months I had no reply. I'll try with a fax right away and see what happens.
Then I need to understand what is a "questionnaire" exactly? How does it fit our needs?
Let me understand and I'll try the best I can.
Hug you all
Rodolfo
|
|
IP Logged |
|
|
|
rodolfo
Guest
|
I made contact with Prof Sicuteri's assistant, Maria Nicolodi ( a researcher herself): sho told me that they are planning to start a trial in the US with Aricept as a cure for ch.
I understand they already received permission in the US.
So, as it may be a bit covert, it should not be impossible to trace, if someone in the US, maybe with OUCH, could start inquiring.
If there is very little security in numbers for us, in the present and in the foreseeable future (we are too few to be ever worth something to a totally non-ethycal industry) we should arrange for our privately held, web-coordinated trials.
Again, after over thirty years of clusters, I believe the seed of a cure for us is here.
Aricept can be the beginning, but only if we start testing it.
Keep hope alive.
Rodolfo
|
|
IP Logged |
|
|
|
nancyc
New Board Old Timer
Friends don't let friends post drunk on mbs......
Gender: 
Posts: 384
|
|
Re: ARICEPT - There is hope! A cure at hand?
« Reply #31 on: Mar 26th, 2002, 5:38am » |
Quote Modify
|
Thank you so much for your effort...as I told you via email, I am seeing a new neuro today at the Medical College...she is from Italy...I plan to talk with her about this drug....thanks so much for all the support you have been to me... 
|
|
IP Logged |
|
|
|
Riccardo
New Board Old Timer
Serial kisser... and Stetsons lover...
Gender:
Posts: 442
|
|
Re: ARICEPT - GOOD NEWS!!!
« Reply #32 on: Mar 26th, 2002, 8:20am » |
Quote Modify
|
Doc Nicolodi (a co-worker of Doc Sicuteri) has called me by phone today.
They want to build a test group with OUCH Italia about Aricept.
She was very nice, and she has promised she will ask to pharmaceutical environment for free Aricept to use during tests.
(BTW, the price of Aricept in Italy is approx US $150 for a cycle of 1 month).... surely better than Imitrex expenses, anyway... 
I will update you as soon as possible.
Seems that there is hope...really!
|
|
IP Logged |
Riccardo OUCH-Italia
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Good work Riccardo
« Reply #33 on: Mar 26th, 2002, 8:36am » |
Quote Modify
|
Way to go!
OUCH Italia rules!
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
dannyboy
New Board Old Timer
Docs didn't design the machine they're working on
Gender:
Posts: 329
|
|
Re: ARICEPT - There is hope! A cure at hand?
« Reply #34 on: Mar 26th, 2002, 8:58am » |
Quote Modify
|
I LOVE THIS JOB!
Well done Riccardo and Rodolfo and OUCH ITALIA!!! I have such an excited feeling when I read things like this. I will follow closely all the progress that you make.
God Bless!!
|
|
IP Logged |
Bedside manner is no substitute for a correct diagnosis - Bill Gates
|
|
|
nancyc
New Board Old Timer
Friends don't let friends post drunk on mbs......
Gender:
Posts: 384
|
|
Re: ARICEPT - There is hope! A cure at hand?
« Reply #35 on: Mar 26th, 2002, 8:46pm » |
Quote Modify
|
My new neuro i saw today is willing to try me on the aricept if the depakote does not work for me...she will get all the info on what they are doing in Italy if I want to try it...I am going to a Medical University and she says she will be able to try me on this or any other drug that is being studied like the one in England...WOW, i could not believe it...thanks so much Rodolfo...
|
|
IP Logged |
|
|
|
Mattso
Guest
|
|
Re: ARICEPT - There is hope! A cure at hand?
« Reply #36 on: Apr 1st, 2002, 2:13am » |
Quote Modify
Remove
|
Does anyone have any additional info on Aricept, or a link to some? I would love to have something to show my doctor.
Any additional reports of personal experiences with Aricept would also be greatly appreciated.
Thanks.
|
|
IP Logged |
|
|
|
rodolfo
Guest
|
This is the Aricept cure.
You start with 5 mg. in the evening, before sleep, and you try to reach the maximum dosage (5, 7.5 or 10 mg according to your bodyweight: I can reach 10 mg. because I’m over 75 kilos (I guess that’s the threshold).
Probably you should increase the dosage to your determined maximum (agreed upon with a doctor) as fast as possible, doing 5 days per each step/upgrade. You start with 5 mg for 5 days, then 7.5 for 5 days, then 10 (if 10 is the target).
The suggested cure says that you do 3 months Aricept, then take a month pause. During that month you take another medicine, called Nicetile (producer Sigma-Tau, the active principle should be acetyl-L-carnitine (ALC) once a day in the morning.
After that month you start over again with Aricept, following the same path to reach your target dosage.
I didn’t do that.
I cured the main cluster and decided to “live” with the minor ones without Aricept.
I am now wondering what I’ll do this year, haven’t decided yet. Let me tell you why (a bit of bad news are due at a certain point).
Aricept is not like drinking water. I must admit ( as I know I am a very sensitive guy) that I still cannot appreciate for sure what side reactions are really there and what are only in my rather strong imagination, anyway, this is how I see it.
Aricept makes both your conscious thinking and your subliminal activity extremely vivid: so that will be quite something new, dreams will be different and you will probably want to mitigate that effect with some sleeping stuff (I use a benzodiazepine called Minias).
Aricept does definitely not improve your physical fitness: I like jogging, play tennis, and it is harder when you are going through Aricept. Nothing really spectacular, but you feel a little wasted, specially after a real physical effort.
No other real side effect. But still, not nothing. It is a substance you “perceive” at work. Not necessarily unpleasant, but it is “there”.
That is to explain why I feel a need to take a break, to recover in full my physical fitness, and so on.
But this year I don’t know: Aricept didn’t seem so heavy at all, and the results so awesome!
Finally a key remark regarding fear. Fear has sealed my life, accompanied every holyday, every date, every long term project: will I make it or will I be struck again and will have do hide somewere?
We ch live with something that goes from fear to terror: I could never measure, at the end of the year, what is worse: the pain or the terror, for if it is not “coming right now” it might be there anytime.
I think this is the greatest gift of the cure.
You are left dealing with pain (much less of course). Fear? Not much to be left afraid of, just pain: we certainly know what it is and, for God’s sake, how can WE be afraid of a little bit of pain?
So I think this is the real beauty: without fear it’s a new life.
Some useful hints: Aricept is expensive, and will cost you (down here in Italy) around 4 $ a day, on 10 mg.
10 mg. is relatively much cheaper than 5 mg. So I suggest you buy 10 mg. and dose that.
Please be advised that the active principle is triggered by light: so if you are using fractions of a pill, you should store the rest in a dark place, like a little box.
That’s all I can think of.
rodolfo
|
|
IP Logged |
|
|
|
nancyc
New Board Old Timer
Friends don't let friends post drunk on mbs......
Gender:
Posts: 384
|
|
Re: ARICEPT - There is hope! A cure at hand?
« Reply #38 on: Apr 12th, 2002, 11:21am » |
Quote Modify
|
OK, I am ready to try it...have a call into my neuro now...she will probably want to talk to Dr. Sicuteri or his assistant...she is from Italy too....any help from you, Riccardo or anyone else on info would be greatly appreciated....I can not take the side effects of the depakene and the clusters are getting worse instead of better....thanks ...
|
|
IP Logged |
|
|
|
Riccardo
New Board Old Timer
Serial kisser... and Stetsons lover...
Gender:
Posts: 442
|
|
Re: ARICEPT - There is hope! A cure at hand?
« Reply #39 on: Apr 12th, 2002, 12:59pm » |
Quote Modify
|
It seems me that Rodolfo has posted the Sicuteri E-mail in this thread.
Anyway, if you need a phone number, I can give it on Monday or Tuesday (sorry, but I have only at work...)
Ciao Nancy, and give a ciao to the Italian neuro
|
|
IP Logged |
Riccardo OUCH-Italia
|
|
|
nancyc
New Board Old Timer
Friends don't let friends post drunk on mbs......
Gender:
Posts: 384
|
|
Re: ARICEPT - There is hope! A cure at hand?
« Reply #40 on: Apr 12th, 2002, 5:56pm » |
Quote Modify
|
Yes, we need the phone number...thanks so much...I emailed him but Rodolfo said he is slow to answer emails...thanks so much... ;D will be waiting to hear from you, bro.
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss