oral ampligen, alferon LDO

[heapsreal]

Wondering if anyone knows much about alferon LDO, an oral version of ampligen. Has anyone used it or know if its available to buy outside of experimental use.

Cheers!!!!

 

[cfs since 1998]

Alferon LDO is not an oral version of ampligen, it is a seperate drug that Hemispherx Biopharama is currently developing. The oral version of Ampligen is called Oragens, and I'm not sure Oragens has moved beyond the "idea on paper" stage. However, I have often wondered whether Alferon N or Alferon LDO would help CFS. Along the same lines, a study found XMRV sensitive to interferon beta, maybe a type of beta interferon would help us.

 

[heapsreal]

what info i did find on alferon LDO was that it was effective against herpes viruses and i think possible use in hiv

 

[heapsreal]

I have been doing alot of reading on interferon and interferon inducers and they are used alot in hepatittis and herpes infections. Not alot of info in cfs but what i have found it seems to have an effect. I think interferon could be a good treatment for us as its not specific to a particular infection but enhances our own immune systems. I have also been searching info on natural killer cells in cfs and it seems to be a problem for us cfsers and it appears that these interferons and interferon inducers have an ability to improve our NK cell function which seems to be what people with cfs need.

Have you found this similar in your own research, cfs1998??

 

[kat0465]

my doc has put me on a sublingual oral interferon, while it has upped my nk cells. it hasent done a thing to touch my EBV and HHV6 titers, they coninue to climb sky high
she wants to put me on valycyte, but i think im gonna tr some olive leaf and lauricidin before i go for the Hard core stuff.

 

[heapsreal]

how long have u been on the oral interferon? Would it take some time for nk cells to beat down viral load. Maybe it increases nk cells but not there function. just a thought.

 

[cfs since 1998]

I have been doing alot of reading on interferon and interferon inducers and they are used alot in hepatittis and herpes infections. Not alot of info in cfs but what i have found it seems to have an effect. I think interferon could be a good treatment for us as its not specific to a particular infection but enhances our own immune systems. I have also been searching info on natural killer cells in cfs and it seems to be a problem for us cfsers and it appears that these interferons and interferon inducers have an ability to improve our NK cell function which seems to be what people with cfs need.

Have you found this similar in your own research, cfs1998??

I would think some kind of interferon could be a helpful treatment for us but sadly I don't think it's ever been tried.

 

[Jenny]

Cort has some info on interferon here:

http://www.aboutmecfs.org/Trt/TrtInterferon.aspx

There have been a few trials - the ME Wiki page says that some studies showed benefits but they were poorly designed. Also, Dr Chia talked a bit about this at the Invest in ME conference 2010, but he said that there were no clear benefits.

Jenny

 

[kat0465]

sorry heaps, i just saw your post,
i have been on the oral interferon for years, my NK levels always fluctuate. they will be good for 3 or 4 months and then they hit bottom again.the last time she checked them,she wanted me at 40 and they were at 39
so that was really good for me.they havent been that good in a long time.

you could be onto something, maybe they arent working right even tho my Numbers are rising.it mkes sense cause my titers to all those viruses keep on climbing.i started the lauricidin friday, at a very small dose. and woke up this morning with bad chest pains, low pulse rate and generally feeling worse. dont know of the lauricidin is killing something( probably me,lol) and im having a herx reaction,

gonna stop taking it for a few days and see how i feel. it seems like whenever i start to kill off thebugs my heart goes wacky.and if the lauricidin made me feel that way, i can't imagine what the valycyte will do to me!

 

[heapsreal]

hi Kat, are u about to start valcyte? Some have less side effects/die off when they have been on valtrex or famvir for a few months first. Oral interferon sounds interesting, i have cycloferon on hand which i ordered recently, it helps your own body to produce interferon and the info on it says it strengthens nk cells and has antiviral properties. Im going to give it a couple of months then ad it to my av's. My nk numbers have always been within range but just dont function properly, but my other lymphocytes are all elevated probably indicating ebv reactivation.

I wish they would just bloody approve ampligen!!!! lol

 

[kat0465]

well heaps, doc said she wanted me to start it, and that a nurse would call and get the ball rolling, well NO call. so i called 3 or 4 times and still haven't heard a thing.
shes a good doc but has a huge patient load, so some of us fall thru the cracks, and her staff is really awful!

but shes all we have here, so im stuck and also afraid she will put me on this strong drug and then leave me hanging if i have some trouble with such a heavy duty med.

I agree about the ampligen!! i mean 20+ years to study a drug, they know it works. they just dont want it to! ;(

 

[Tembo]

I was just reading Kelvin Lords blog of how Ampligen has helped him soo much. I would give my right arm to get this!! How is he taking it if its not approved? and where can I get some
Heapsreal how bout I fly over to the US and Ill bring some back for us both yeh? haha

 

[kat0465]

if im understanding it right, theres a few docs here in the us that are in a study of ampligen.
bad thing is, they make the patient pay all the expense of the drug.i think it runs about 2000 to 3000 a month. and Ins dosent pay.( big surprise there)

if i had 50.000 laying around, id head for the nearest doc... sigh. i keep hoping it will get approved soon.

 

[Tembo]

Kat when you say approved are you meaning approved for insurance purposes? The US medical system is so different from ours I get confused sometimes. Is what your saying is that its FDA approved but not insurance wise making it more affordable?
sorry for all the questions

 

[cfs since 1998]

The US medical system is so different from ours I get confused sometimes. Is what your saying is that its FDA approved but not insurance wise making it more affordable?

Ampligen is not FDA approved, period. Insurance won't cover unapproved drugs. Patients are able to get it because only Dr. Peterson and Dr. Lapp (I think) are participating in an ongoing open-label cost-recovery clinical trial. And unfortunately, it's not going to be approved any time soon because the FDA rejected it last year and asked for a new placebo-controlled trial three times the size of the original. It could be another two years at a bare minimum to get it approved, if it is ever approved at all.

 

[Tembo]

Ah ok - thanks for clearing that up for me CFS - much appreciated

 

[heapsreal]

would be nice to hear from others who are on ampligen and how there going. If it was 100% going to fix me i would pay $3000 a month, but nothing is 100%.
Tembo we might have to nic some and bring it back home.

cheers!!!

 

[Tembo]

It really would be nice wouldnt it - Im so curious to know how many people haven gotten well from it. So is it actually an xmrv inhibitor?
Id pay 3k to be well too how wonderful would that be, I can hardly remember.

ok its a deal HReal - you nic - i'll stand watch and lets hope we can get it through customs! hahaha

 

[heapsreal]

great so your driving and im carry the gun , i thought it was the other way round. Maybe we could borrow someones child and plant it there, lol.
resorting to drug smugglers to get better, lol

 

[Tembo]

Oh you made me BURST out laughing HR!!!
its an excellent plan......now to find a smuggler....