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Caprivax Trials

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby finn » Thu Apr 08, 2004 12:46 pm

Sorry, time to leave the board.

-finn
Last edited by finn on Sun Aug 28, 2005 8:23 am, edited 2 times in total.
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Caprivax Trials

Postby 2gentle » Sat Apr 10, 2004 10:39 am

Thanks, Finn....this is a good site, and i have it on my favs list....
Be well, and have a wonderful Easter!
Thanks,
Every journey begins with a single step...Diane
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Re: Caprivax Trials at Kent Clinic

Postby nuri » Fri Apr 16, 2004 12:15 pm

Would anyone know the phone number to contact to join these trials?

Aikika if you can help, I would be most grateful.

Many thanks.

Aikika wrote:I've been on these trials for a month now and I thought others might want to know about it. You can find information about the 'product' on this site- just type Caprivax into the search section.
Don't ask how I got to hear about it - friend of a friend type of thing.
Anyway from my home in Sheffield (UK), we - my partner Lorraine and I -have had to travel the 500 mile round trip to Kent for the first few injections (once a week). Last week the doctor gave me three weeks supply so I could self medicate.
On our first visit we met a number of MS sufferers, most of whom reported significant improvements in their conditions including one woman who was 'chair bound' before beginning the treatment. The organisation involved also produce a DVD featuring up to twenty people whose lives have been turned around by this new wonder treatment.
I would like to report changes in my condition but nothing as yet. Early days? We shall see.
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Caprivax trials....

Postby 2gentle is... » Fri Apr 16, 2004 7:06 pm

It would be really great if you could get into an Aimspro trial! I'll wish you luck in doing so!!

I'm really excited (a little,lol)about this medication....just the idea of injecting once a wk, sub q, is very exciting.

I also hope anyone currently involved in a trial, will post about it...it would b wonderful!

Good Luck and be well!
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Postby AnnW » Sat Apr 17, 2004 2:02 am

Hi everyone

I am on Aimspro/Caprivax and had my second injection on Thursday. It is early days yet, but all the spasms I had shooting up my legs (during the night especially) have disappeared completely. My bladder, which righted itself whilst on LDN, has also continued to function normally to the point where I don't have to remember to 'pay a visit' before leaving the house at all now (yeay :lol: ). My sleeping is returning to normal since I stopped LDN (when I upped the dose on LDN sleeping did become a bit of a problem). I do not have any site reactions to the Aimspro as I am obviously totally compatible with goat :lol: .

I don't know if it is the Aimspro or not, but since starting my mood is incredibly upbeat, but then again that could be because I was born in May and we all now know how lucky that was!! 8)

Next Thursday I will be given a batch of injections so I can self-medicate. Will keep you all posted.

Ann
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Aimspro Trials

Postby Aikika » Sun Apr 18, 2004 4:05 am

I don't know whether I should be saying this but... here goes.

I'm not really on the trial as such although the Doctor I'm getting treatment from is in the Dalgleish loop. Without giving his name, his practice is in Bromley, Kent. As I said, I got to hear about him through a friend of a friend and I'm not sure that the man, although a smashing person, would welcome a deluge of interest. Sorry. Next time I see him, I'll mention that there is a lot of interest on the site and see what he says.

As a matter of interest, the main improvement I have seen since taking the 'product' is in my bladder control. I actually get 6 or 7 hours sleep without having to make a call.
BUT, my legs still feel like lead and my left hand is still useless.
The doctor inceased my dosage to twice a week this week, so that might help.
Still hoping.
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Postby AnnW » Mon Apr 19, 2004 1:19 am

Aikika - I am seeing him on Thursday, but I am under the impression that EVERYTHING has to go through Daval first, he cannot prescribe off his own back. So the first port of call for anyone interested would be www.davalinternational.com.

It sounds as if we are both 'informed consent' patients. I would agree with you about the sleep - it is wonderful to go to bed at 10.30pm and wake when the alarm goes off :lol: .

Ann
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Caprivax/Aimspro Studies.....

Postby 2gentle » Mon Apr 19, 2004 5:21 am

HI ALL! :D
HOPE THIS FINDS EVERYONE WELL, AND HAVING A GOOD WEEK....

THE IDEA OF ACTUALLY SLEEPING ALL NITE IS CERTAINLY SOMETHING I'M NOT USED TO,LOL, SO FOR THOSE OF YOU WHO *ARE* DOING THAT-"GET SOME SLEEP FOR ME TOO!", WILL YA? :lol: AND TO THINK MAYBE I WOULDN'T HAVE TO MAKE A TRIP TO THE BATHROOM, DURING THE NITE IS PURE HEAVEN!

KEEP US POSTED,AND DO BE WELL! THANKS AGAIN FOR BEING A "GUINEA PIG" FOR THOSE OF US WHO CAN'T!

U ROCK!! :D /color
Every journey begins with a single step...Diane
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Postby fightingms » Tue Apr 20, 2004 4:28 am

Good Luck to all on the trial study. Thank you for the research in this future medication. It sure does sound promising. :wink:

Take care.......Kim
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Re: Aimspro

Postby Guest » Tue Apr 27, 2004 10:33 am

my dad has ms and was reading about the goat serum in the daily mail. it said the trails have closed but you can get more information from the Davalinternational site. i went on but the page about the serum wouldnt not come up even though it was uploading :cry:
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Postby Finn as a quest » Tue Apr 27, 2004 12:06 pm

There's not that much information about Aimspro in the Daval site. But there was a link to copy of a 'human interest'-story published about it in the New Pathways magazine. It is not a real pdf-document, pages are scanned from the paper, so the text is rather blurred (but readable).

BTW, if it really turns out to be as good as the story suggests it might be, it will be a small revolution in treating MS. But like Public Enemy rapped few years ago: "Don't Believe The Hype".
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Postby finn » Tue Apr 27, 2004 1:14 pm

Sorry, time to leave the board.

-finn
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Postby Guest » Tue Apr 27, 2004 1:23 pm

AnnW wrote:Aikika - I am seeing him on Thursday, but I am under the impression that EVERYTHING has to go through Daval first, he cannot prescribe off his own back. So the first port of call for anyone interested would be www.davalinternational.com.

It sounds as if we are both 'informed consent' patients. I would agree with you about the sleep - it is wonderful to go to bed at 10.30pm and wake when the alarm goes off :lol: .

Ann
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Re: Aimspro Trials

Postby AnnW » Tue Apr 27, 2004 2:35 pm

Aikika wrote:The doctor inceased my dosage to twice a week this week


Its funny, but he did that for me as well. And I don't suppose we have to be so quiet about it now that it has been splashed about all over the Daily Mail :lol:

Update after 4 injections of Aimspro. This week I have been pruning everything that moves in my garden and I have also 'Ronsealed' the hardwood garden furniture. I have made umpteen trips to dump with said garden rubbish. I had forgotten what backache from sheer hard graft was like (it feels good!) and I have been doing all this in the blazing sun 8). Ok. this is Britain, so it wasn't that hot :wink:, but it did all end with this amazing downpour and thunderstorm. Cue to sleep another 8 hours non-stop methinks :)

Ann
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Postby Aikika » Wed Apr 28, 2004 12:16 pm

You are making me jealous Ann.
It hurt me to watch Lorraine pushing the mower around the lawn this weekend - That's my job - or was.
And as for the heat!!
18 degrees and I'm pooped before I get out the door.
Still hoping.
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