Have you been treated with Ampligen?

[AndrewB]

Here in the UK the drug isnt available, but i did read that 70% of ME patients responded well, and some even felt 'cured' after the full IV course.
I did see that a study was being carried out again last month in america.
I was wondering if anyone had taken this treatment, and what, if any benefits they had experienced.

 

[Tony Mach]

i did read that 70% of ME patients responded well, and some even felt 'cured' after the full IV course.

As far as I know, if Ampligen helps, you need to continue to take it, so I wouldn't say it 'cures'. And being able to work full time while taking is a bit more than "feeling cured".

Google Mary Schweitzer Ampligen, e.g.:
http://www.cfids-me.org/marys/ampdiaries.html
http://www.cfids-me.org/marys/ampdiaries2.html
http://www.cfids-me.org/marys/ampcoda.html
http://www.cfids-me.org/cfscc/amptestimony.html

Furthermore, I suggest you read "Osler's Web", where you can find a bit about the origins of Ampligen (and more about ME/CFS).

From what I read (and without any personal experience), I would say Ampligen is by far the best we have at the moment every other currently available treatment (regardless how good they are) pales compared to this. It is expensive and difficult to get, so for me it is nothing but a dream Personally, I will try to find a good cardiologist, find out if I have POTS/OI and if yes then try out low-dose beta-blocker or alpha-antagonists.

Good luck to you!

 

[vli]

will any of those who've been on amp chime in on this??

 

[AndrewB]

will any of those who've been on amp chime in on this??

It would be great to hear from someone who has tried it

 

[AndrewB]

As far as I know, if Ampligen helps, you need to continue to take it, so I wouldn't say it 'cures'. And being able to work full time while taking is a bit more than "feeling cured".

Google Mary Schweitzer Ampligen, e.g.:
http://www.cfids-me.org/marys/ampdiaries.html
http://www.cfids-me.org/marys/ampdiaries2.html
http://www.cfids-me.org/marys/ampcoda.html
http://www.cfids-me.org/cfscc/amptestimony.html

Furthermore, I suggest you read "Osler's Web", where you can find a bit about the origins of Ampligen (and more about ME/CFS).

From what I read (and without any personal experience), I would say Ampligen is by far the best we have at the moment every other currently available treatment (regardless how good they are) pales compared to this. It is expensive and difficult to get, so for me it is nothing but a dream Personally, I will try to find a good cardiologist, find out if I have POTS/OI and if yes then try out low-dose beta-blocker or alpha-antagonists.

Good luck to you!

Tony thanks for the links, im buy Oslers Web, im just currently reading MAGICAL MEDICINE:
HOWTO MAKE A DISEASE DISAPPEAR, and thats a very informative read.

 

[Evangelina]

There are quite a few people who have tried it or are currently on it. I would direct you to the following:

https://docs.google.com/spreadsheet...FBkSHRPdkhZblRobzVWUTZUY3JGQ0E&hl=en_US#gid=0

I would read Kelvin Lord's Blog - it helped him greatly. His first blog entry is here:
http://ampligen-treatment.blogspot.com/2010/01/my-ampligen-treatment-begins.html

I would also suggest reading here: (it is old, but I have been in contact with all of the authors and found their experiences to be helpful):

http://www.cfids-me.org/aacfs/ampligen.html

and there are other blogs too - just google Ampligen wordpress or Ampligen blogger and they'll pop up.

 

[liquid sky]

Thanks for all the links. If only they would get Ampligen approved for ME and make it available through insurance. Insurance companies pay more than $20,000/year to treat MS and RA. Just not right.

 

[Daffodil]

there is a yahoo group just for ampligen experiences...just go to yahoo groups and do a search

 

[AndrewB]

Thanks very much for the links everbody i will read them all and search yahoo groups too