Ampligen success rate?

[Nielk]

I know that a lot has been written here about Ampligen and the studies done by Hemispherx.

What I would really like to know is from the people who received Ampligen: Did it help you? to what degree? Did it make you worse?

The reason for my questions is that my doctor - Dr Enlander - is starting an open study for Hemispherx for CFS patients with Ampligen.
There will be costs involved and traveling twice a week to receive the I.V. solution.

I would only contemplate it if there is a high chance of positive improvement.
I've heard that there were some controversies about previous trials but, really don't know much about it.

Please, if you have personal experience with Ampligen, let me know what you think.

Thanks,

Nielk

 

[LaurelW]

I was helped immensely by Ampligen. I'd say if you can afford it, go for it.

 

[Hope123]

Hi, I've heard mixed results with Ampligen including people who did very well while or shortly after the drug was given but then declined when Ampligen was stopped and others who didn't change or got worse on it.

I was able to to to Judy Mikovits' talk last week and someone asked about Ampligen during the talk. Judy M. was not there yet but Annette Whittemore spoke up and mentioned that her daughter had been on Ampligen for 8 years, that results for people were mixed, and that there was some thought that Ampligen might increase XMRV replication in some people. No lab data was presented though. Then another doc from Gordon Med Associates chimed in and said Ampligen was not the sole answer. Ms. W. mentioned that they don't know enough yet to know who would respond well or not to Ampligen; she did say that if one was going to take it to get it in an approved trial which Enlander probably is. There was also some mention that increased replication of XMRV might not be a bad thing if it meant it antiretrovirals could better get at the "exposed" virus.

There are some blogs about the talk and possibly video available in the future so you should look at some other resources as the talk was long and I was quite tired/ sick during it.

 

[August59]

The $2000 - $2200 a month for 12 - 18 months is what's hard to swallow, but if I had it I would do it. The study criteria used to not allow co-administration of anti-virals while taking the Ampligen, but that could have changed.

 

[Tony]

Laurel, good to hear you were helped so much. How long ago did you take it? Can you let us know what 'type' of patient you were/are as in viral titers, interleukins, dysbiosis etc?
That's one big part of the puzzle we don't get to hear about, which is a bit annoying really.

 

[Nielk]

Anyone else with personal experience with Ampligen?

 

[LaurelW]

Sorry, I don't have any of those numbers. Any tests that were done on my blood are somewhere in the bowels of Hemispherx. The only distinguishing characteristic I know about is my doctor said that among her patients, I seemed to be in the "clearly viral" subgroup. And she turned out to be correct--I tested XMRV+.

The trial was 2003-2004. In spite of strong flu-like side effects which dissipated after about four months, I started to feel more energy within a few weeks. By the time the year and a half was over, I was hiking, roller blading, and I went back to school. I stayed well for 4 1/2 years, and then crashed badly. I think had I not done so much and had unexpected extraordinary stress, I would probably still be well.

Those puzzle pieces would be very helpful to those of us deciding whether to spend a big chunk of change to get a drug that we don't even know the outcome of. I hope the research will get to that point eventually, the sooner the better. I personally am pretty fed up with the glacial progress since the Science paper.:Retro mad:

 

[JAH]

Hi Nielk,

I took ampligen for about 6 months and it made me worse. I have actually never recovered from it. (though I have worsened in general over the years, and that is certainly unrelated to ampligen, but I have been worse since) There were 3 other people I knew who were also getting infusions. One woman was severely ill - falling asleep in the waiting room, using a wheelchair - and she was feeling better on ampligen, but unfortunately had to stop because of the money. One man was moderately ill and I don't think it helped him. Another woman was not too sick, but I don't know her outcome. I also had a very severe allergic reaction the first couple of times I took it- like I was having a heart attack, an elephant sitting on my chest, difficulty breathing - but I was so desperate that I kept going! (the nurses were amazed) My doctor said that was a known side effect of the drug, so they slowed down the rate of the drip- and I was able to tolerate it. That's all I know about ampligen- I didn't have a lot of the symptoms reported by Kelvin, and of course not his good outcome - but that was my experience. We all react so differently to treatments, making it so difficult to know what is best, but I wish you best it whatever you decide,

JAH

 

[Tony]

Thanks Laurel. I didn't think of the data being kept by Hemispherx if you were part of a trial...

 

[Sasha]

Interesting thread - thanks for starting it, Neil! I think we're all interested in Ampligen.

I just wanted to make the point that with almost any intervention that we ask other PR members about, we are asking among a group of people for whom things mostly haven't worked - otherwise we mostly wouldn't be on PR! We are not a random sample of PWC but are probably the worst/longest affected who haven't been able to find anything that gave them lasting benefit. The PWC who are largely recovered are skipping across the meadow somewhere and not reading these surveys.

The people with the most representative info will be those who had a sample of patients before and after - such as a doctor with a lot of PWC in their practice who tried Ampligen, or (especially) Hemispherx as someone has said.

It's still interesting to hear of people's experience, though! Fascinating how varied it is.

 

[heapsreal]

Anyone have any info on an oral version of ampligen, maybe its an interferon type drug where i think ampligen stimulates our own interferon production. I think its called alferon LDO, dont know if its approved or is in the process of being tested etc. It would save the hassle of going for iv infusions 2-3 times a week. Just found an old post that said oral version of ampligen is called oragens, the alferon is a seperate type of drug but it seems xmrv maybe sensitive to beta interferon, maybe why cycloferon which is an interferon stimulant has helped me quite abit. I think interferon inducers/stimulators dont have a negative impact on interferon production when stopping unlike interferon drugs which when stopped theres a lag period before own interferon picks up. I have read in russia that they use interferon inducers like cycloferon with actual interferon to help avoid this lag period once interferon is stopped.

Its all interesting and im sure it will all pick up when more xmrv studies start coming through.

cheers!!!

 

[August59]

I thought I saw that Alferon LDO discussed recently on the forum. I believe it is a different drug completely, but it is in development by Hemispherix (maker of Ampligen). I could be wrong!

 

[August59]

Here you go. http://www.hemispherx.net/content/rnd/

I find a little odd that they only have one product in the marketplace.

 

[Nielk]

Thank you everyone for your input.
I'm glad for LaurelW that it was a big success and feel really bad
JAH that you had such a bad experience.

Of course Sasha you are right. We are kind of the blind leading the blind but, even asking expert doctors - they are confused.
The outcomes and results seem to be all over the place.

Hemisphrx claims 80% success rate but I don't trust those figures. Even if at some point these 80% had some success, I hear from many that it wears off once you stop the intake.

I didn't hear anything about an oral version.
I spoke to someone at Hemispherx a couple of days ago and they said the administration will be through I.V.

I think that it's so unfair - the decisions we have to make with little information and with half of brain working.

 

[slayadragon]

Laurel and JAH, I am hoping that you might answer a couple of questions.

Where were you living before you started Ampligen?

Where were you living when you started the drug? Where were you getting the infusions?

Laurel, where were you living when you crashed?

Where are you both living now?

Thank you very much for your help!

Best, Lisa

 

[LaurelW]

I've been living in Utah the whole time.

As far as an oral version of Ampligen goes, I've heard about it a bunch but it has never come to fruition as far as I know. Ampligen is a very fussy drug--they can't even put it in plastic bottles, it has to be glass. And it has to be refrigerated.

I don't believe the 80% success rate either. Not long ago Kelvin mentioned some figures from I forget which doctor, which I seem to remember as 70%. Too foggy to look it up, but I think it's in his blog or on one of the comments.

 

[JAH]

I got sick in Boston, but soon moved to the sf bay area (not thinking that I would be sick for the rest of my life) and that is where I took the ampigen and still live today. Even though i paid for the treatment, I was sort of part of a study, as I was very carefully monitored during the treatment. I have often wondered if they found a way to dismiss my result- maybe because of my allergic reaction? I am not a conspiracy theorist in any way, but having gone through ampligen made me realize how easily test results- that we all take as sacrosanct - can be manipulated. I know that my nurse was completely honest and accurate in her reporting of my situation, but it really just takes one nurse to alter study results. I would be quite skeptical of an 80% reporting rate, but no doubt that ampligen can really help some people.

good luck,

JAH

 

[Nielk]

For my British and Irish counterparts - this is from Dr. Derek Enlander (ME/CFS specialist in NY)

Derek Enlander Joan, I asked Hemispherix about British and Irish use of Ampligen. I have been invited to participate in their private medical meeting in 2 weeks. I will again ask them about the international use.

I will let you know if I found out anything new about this possible ampligen study abroad.

 

[Riley]

Would Dr. Mikovits's comments about ampligen possibly increasing xmrv replication deter any of you from taking it (assuming that money etc. were no object)? I am probably going to try to get ampligen from Dr. Lapp in the near future, and this is the only thing giving me pause.

 

[Nielk]

Would Dr. Mikovits's comments about ampligen possibly increasing xmrv replication deter any of you from taking it (assuming that money etc. were no object)? I am probably going to try to get ampligen from Dr. Lapp in the near future, and this is the only thing giving me pause.

This would definitely disturb me. Especially that I'm leery about the controversies surrounding it.