EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Posted: Wed Aug 25, 2004 12:33 pm Post subject: LDN/Aimspro
There's lots of anecdotal evidence for LDN and goat-serum easing MS symptoms. For each of these treatments: can it be shown that threre is any effect on the disease progression, or is it just a symptom-relief treatment?
Posted: Thu Aug 26, 2004 3:30 am Post subject: Neurologist dismissed Aimspro
I had a consultation just yesterday with my neurologist and I asked him his view on Aimspro. He was very dismissive of the product. He said it had "no scientific basis", the press reports were very biased in favour of the manufacturer and that the trials being undertaken in the UK were suspicious in that at least one was designed to show that the product didnt work.
But I'm new to this condition and hence to this medic so cant say if this is just an expression of his conservatism. He does strongly council against the quackery found elsewhere on the net.
I think most neurologist would express concern about getting to excited about aimspro - there has been too many 'this is the one' products with MS that have fallen short of their promises. He is also right to counsel against quackery.
However, as far as I can see aimspro does have a scientific basis. And although no one is sure how it works the same can be said for all of the disease modifying drugs such as rebif and copaxone.
As I understand it aimspro uses polyclonal antibodies, proteins produced from the white blood cells of goats in response to an antigen. The goats are inoculated to generate neutralising antibodies. Different antibodies recognise different parts of the antigen, and destroy it.
At the very least is has been shown to have a strong anti-inflammatory qualities. The MS society in the UK, while not raving about it, are not yet dismissing it (and keeping in touch with Daval) and a number of well known neurologists are also keeping an open mind.
The trial is taking place at a well known and respected hospital - nothing sinister or hokey there. It's a placebo controlled, double-blind randomised trial.
So what interests me is why he said that a trial had been set up not to work. Did he say why this had been done and what trial is he is talking about?
Campath is an interesting one. I must say I'm wary until the results come out. It is possible, but won't be known for at least another year, that is may actually convert RRMS to SSMS at a quicker rate than the natural disease progression. That's a theory anyway and there 100s of those around when it comes to MS.
Posted: Sat Aug 28, 2004 4:47 pm Post subject: LDN/Aimspro
To Billf: -
Aimspro has been proposed as a treatment for MS and not a cure - but we can always hope for developments in years to come! Meantime I reckon the VAST majority of MS sufferers wouldn't turn their noses up at ANY effective treatment...
To John (JFH): -
Your neuro seems quite typical of a number of closed-minded, so-called "professionals who shoot from the hip before checking their facts properly. If they care to check davalinternational's website and read the R&D section maybe they might see some respected medical experts giving a fairly open thumbs up to Aimspro. How else would it have got to clinical human trials!
He seems to feel happy talking about the design of the trials when he's also clearly talking out of his nether regions! Expression of conservatism? More like an expression of ignorance and frustration at being able to sod-all for the majority of his MS patients!
About the only worthwhile thing he seems to say is to caution against quackery found elsewhere on the net. In this he is absolutely right! There are companies out there who will sell you (from overseas) goat-serum that is only made for medical research. It is potentially very unwise to go this route AT ALL! The only "goat serum" for MS is Aimspro from Daval - it is not available ANYWHERE else - period.
To Felly: -
Thank you! Someone with a level-headed and objective opinion!
To all: -
Yes - of course I'm an Aimspro supporter... I've been on it over 3 years and were it not for this treatment, I'd be bed-bound and incapable of speech by now, if not FAR worse (given the way I was going). As it is I walk using a frame (not a wheelchair much at all these days), still drive my care, take my mum out shopping, and so on.
Anyone wanting to contact me only has to send a personal message.
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Sat Aug 28, 2004 5:51 pm Post subject:
Mark, you may have answered the questions before, but I'm excited that we have someone with so much experience with this potential treatment in our community. Please share with the group:
What was your condition prior to gettingon Aimspro?
Has the formula (or application method) changed (to your knowledge) over the 3 years?
Have you progressed at all while on Aimspro?
Do you use any other treatments? Had you in the past?
Posted: Sat Aug 28, 2004 6:14 pm Post subject: Aimspro
Hi Aaron,
Yes, my details have been posted on this site before so I won't tire everyone by cutting and pasting the whole lot!! See below...
Forum: General Discussion Posted: Sat Jul 24, 2004 6:41 am Subject: Latest Statement from the MD of Daval - 3 posts on this
Forum: General Discussion Posted: Sat Jul 24, 2004 10:47 am Subject: Goat Serum - 1 post
In answer to your questions: -
3 years of steady downhill progress to the point of using an electric wheelchair all the time. Started Aimspro 3 1/2 years ago and stabilised immediately. Slow upward progress - now using frame indoors and have even taken up to 30 very wobbly but unaided steps recently. Have been told that my speech has moticeably improved in that time (by family and friends, not Daval staff).
Formula (unknown) and method (still self-administered, weekly, subcutaneous injections) unchanged to my knowledge.
Currently on Baclofen 6mg/d (prev. 8-10mg/d) for past 6+ yrs.
No other treatment beyond i/v steroids at onset only for acute balance problem.
Happy to answer any questions (within my knowledge!!!)
His (the neurologist) statement didn't seem to be commenting on the protocol, more the objectives of the trialS (plural!). Anyway, it certainly made his patient think there was something wrong with the trials! I strongly suspect that THAT WAS the neuro's objective in making his statements and THAT was what I took objection to. Your quote about measuring success against disability scales should highlight the bit where you say "It could mean...". Sure, it could - but I think you are giving this person far more benefit of the doubt than HE is giving Daval and Aimspro!!!
I personally applaud Daval for ambition rather than just picking soft or easy targets and I am just as confident as they are.
I entirely agree with you - nothing is PROVEN until the data is in. That is scientific logic.
I totally understand people's reservations about anecdotal evidence (such as mine!) but the reason I get to metaphorically jump up and down on my chair is more often than not is in response to blase statements, unsubstantiated comments and innuendo's by the so-called professionals that should know better. That is not critical evaluation; it is just blinkered, biased and equally irresponsible.
A responsible reply to a patient could be along the lines of, "There is a lot of research being done in many areas - when these results are known I can give a much clearer idea of my recommendations." It would be irresponsible for him to have said, "Oh yes, this is fantastic! - I can't wait to use it on my patients!" So why is it acceptable for him to say, "No scientific basis... press reports very biased... trials were suspicious..." That is personal comment - not professional opinion and the neuro is letting his own personal feelings (and pride?) set his standards of clinical behaviour.
Not being totally up-to-date on everything is quite natural - even amongst medics - as is a desire to raise one's levels of understanding. "Unrequited Ignorance" is not acceptable from these people. I just challenge it whenever I see it.
Joined: May 26, 2004 Posts: 1383 Location: London, ON, Canada
Posted: Sun Aug 29, 2004 8:17 am Post subject:
Mark,
Quote:
That is personal comment - not professional opinion and the neuro is letting his own personal feelings (and pride?) set his standards of clinical behavior.
Unfortunately, as a family doc told me a number of months ago, the more specialized a physician may be, the more apt you are to hear comments like you got from the neuro.
About 4 years ago my wife (SPMS) told her neuro at the time that she had just started on Prokarin. His immediate reply was " That's snake oil, don't use it...someone is just trying to make money on it" This neuro didn't have a clue about Prokarin and at the same time told Marg that there was nothing that he could offer her for her SPMS.
You would have thought that he may have commented along the lines that since he couldn't offer her anything and she wanted to try Prokarin to see if it helped her in any way, that would be OK as long as it wouldn't harm her. Not a chance! This neuro likely went to the same etiquette school as your neuro!
Here we are over 4 years later, Marg's SPMS hasn't progressed, most of her symptoms are in check and another neuro at the same clinic is prescribing the Prokarin for her. (he really doesn't support it 100% but has seen what it has done for Marg)
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
We encourage you to also visit our Multiple Sclerosis story and support community on Experience Project.
Experience Project is a vast and powerful community where people connect anonymously through life experiences. It's made by the same people who built This is MS,
on the premise that no one life experience-- like having MS-- defines a person. It now covers over 2 million life stories. Find and share yours!
Forum FAQ
Search
Usergroups
Profile
Log in to check your private messages
Log in
