AMPLIGEN (custom synthesis included)

[mitoMAN]

AMPLIGEN ( Rintatolimod )
https://me-pedia.org/wiki/Ampligen

Some folks had experiences with Ampligen and were part of the official trials etc.
Would love to hear your feedback.

As its an TLR3 Agonist, it might be interesting for those ME/CFS Patients with high viral load or high viral activation.

@dreamydays and I am going to have it custom synthesized and 3rd Party lab checked.

Costs:
Right now it seems like 5 gram costs 500$
3rd Party Lab Testing would be another 400-500€

Weekly dosage:
800mg (2x 400mg IV per Week)

We are also testing Mdivi-1 (Mitochondrial fragmentation inhibitor) as well as ARA-290 (IRR Agonist)

 

[mitoMAN]

Post I use to mark fellow users that are interested.
@bread.

 

[bread.]

Post I use to mark fellow users that are interested.
@bread.

You are the man my friend.

 

[bensmith]

Im interested, thanks for putting it together.

Has anybody tried this as a stand alone and seen results? Im not really capable of doing more than one thing at a time and hopefully pacing better.

How hard is self administration, if anybody has tried this or anything else.

 

[mitoMAN]

Would be really curious to get some feedback from experienced Ampligen users in

it is usually given IV
We would have to consult some pharmacologist if it can be given subq (for example few doses over the course of the IV duration)

 

[Hip]

Would be really curious to get some feedback from experienced Ampligen users in

There are not many people who have actually tried Ampligen, because it is not licensed in any country (except Argentina). So I believe doctors have to get special FDA approval for its use.

You can find a few Ampligen stories if you search the Phoenix Rising Wordpress blog. And there are more Ampligen stories on Health Rising here.

One story I read on PR here.


I don't think you will find many ME/CFS patients with miraculous improvements on Ampligen. More like if it works for you, you may move up one level on the ME/CFS scale of: mild, moderate and severe.

Dr Dan Peterson has been using Ampligen for decades on his ME/CFS patients. Dr Charles Lapp also uses it for ME/CFS.

 

[bensmith]

@Hip thanks hip. Honestly thats all i hope for. I read dr peterson saying agrressive treatement is a good idea s, why im considering amp. I dont feel adequately equipped to deal with this level of illness. If i could just get moderate i have no doubt i could surivive, but at present in very severe i worry.

seems it should at least be an option.

 

[Hip]

If i could just get moderate i have doubt i could surivive, but at present in very severe i worry.

There are other treatments that anecdotally can sometimes move patients up one level on the scale, such as oxymatrine (if you have enterovirus ME/CFS), Valcyte (for herpesvirus ME/CFS), tenofovir, and more recently some patients have been getting good results with Abilify.

Some of these like oxymatrine, tenofovir and Abilify are pretty cheap

 

[bensmith]

Ty @Hip . Ill try and order some test and see if i can teat for those. I was looking at ampligen because its being looked at for long covid. Which i am. Abilify was a no go for me sadly. Just a couple months a level up would help.

 

[mitoMAN]

I am wondering if we connect via DISCORD or a different group chat system. In case you guys are interested to test other custom synthesized CFS substances as well?

 

[dreamydays]

Wherever, you choose? Just let me know mate

 

[choochoo]

There are other treatments that anecdotally can sometimes move patients up one level on the scale, such as oxymatrine (if you have enterovirus ME/CFS), Valcyte (for herpesvirus ME/CFS), tenofovir, and more recently some patients have been getting good results with Abilify.

Some of these like oxymatrine, tenofovir and Abilify are pretty cheap

Hip

Do you know of anyone taking abilify who has continued to have positive effects over the medium term?

I'm trying to establish if the body becomes resistant.

 

[Hip]

Do you know of anyone taking abilify who has continued to have positive effects over the medium term?

There was one patient on this forum who started taking Abilify in 2012; you may be able to contact them and ask. I am not sure how long they took the drug for.

Their last post was in 2014, where they wrote "Haven't posted here in a while because I have been in a state of partial remission for the past year or so with the methylation protocol plus a few other interventions."

 

[mitoMAN]

@Hip would you be in for Ampligen?
I will start a discord server for us CFS guys tonight

 

[Hip]

@Hip would you be in for Ampligen?
I will start a discord server for us CFS guys tonight

I saw your PM, but forgot to answer it. I will answer it now.

 

[mitoMAN]

Just placed the order for the Ampligen today, Lab testing will probably start in January.
We are 7 CFS Patients right now coming together to test it.

 

[choochoo]

Just placed the order for the Ampligen today, Lab testing will probably start in January.
We are 7 CFS Patients right now coming together to test it.

What is the pricing please?

 

[Hubris]

Just placed the order for the Ampligen today, Lab testing will probably start in January.
We are 7 CFS Patients right now coming together to test it.

I am also interested. PMd you.

 

[Canned]

Is there anything to this „ illness duration from 2 -8 years“ for being a responder?

Or is this more like a random choose of criteria for making out a higher percentage responder group?

Edit:
Here’s the Study

 

[mitoMAN]

The best would be if we could find patients from different CFS severities that TRIED Ampligen and have them post their feedback