• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Have you been treated with Ampligen?

AndrewB

Senior Member
Messages
119
Location
England, UK
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

Show me the evidence.
Messages
146
Location
Upper Palatinate, Bavaria
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!
 

AndrewB

Senior Member
Messages
119
Location
England, UK
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.
 
Messages
35
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

Senior Member
Messages
371
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

Senior Member
Messages
5,873
there is a yahoo group just for ampligen experiences...just go to yahoo groups and do a search:)