Ampligen or GcMAF?If all things being equal, you had a chance to try Ampligen or

[Nielk]

If all things being equal, you had the chance to try Ampligen or GcMAF, which one would you recommend?

Is there a specific patient profile that has a better success rate with either one?

This is for a patient who has tried almost everything else. Has a severe case and is getting worse. Quality of life almost non-existent. There is a heavy viral load and indication of inflammation. Up regulation of the immune system.

Thanks for your help,
Nielk

 

[Sushi]

If all things being equal, you had the chance to try Ampligen or GcMAF, which one would you recommend?

Is there a specific patient profile that has a better success rate with either one?

This is for a patient who has tried almost everything else. Has a severe case and is getting worse. Quality of life almost non-existent. There is a heavy viral load and indication of inflammation. Up regulation of the immune system.

Thanks for your help,
Nielk

Someone did post a sort of profile for a patient who had a good bet with Ampligen. I think it was mojoey--sorry if I am wrong. I don't remember the details cause it didn't fit me.

There are also some indicators of those more likely to do well with GcMAF: the genetics of your Vit D receptor (though we aren't sure which is the best lab as there are conflicting results on the same patients), your level of nagalase. Most people taking GcMAF have tested XMRV positive though I don't know if that is an important "qualification."

It is too soon to know if people who do well on GcMAF relapse, but it does seem that many who have taken Ampligen relapsed later after they stopped.

Then there is cost....

It is a hard decision. Probably someone very knowledgeable should do an immune panel and history for this patient and give some qualified input.

Trouble is, it might be hard to find a "neutral" doctor who didn't have is own strong opinion. The same on this forum. I'm taking GcMAF, but I didn't fit the "profile" for Ampligen and I couldn't afford it!

Hope you get some more "weigh-ins."

Best wishes,
Sushi

 

[Nielk]

Thanks sushi,

How are you doing on the GcMAF? I know that there is a very long thread on it but it's daunting to start reading it from start to finish. If you have a couple of minutes can you tell me how long you have been on it? Do you feel any positive response? Do you have adverse reactions especially in the beginning? Lastly, are you taking it alone or with Nexavir? Anything else?
I would appreciate any information.
Thank you,
Nielk

 

[Daffodil]

ampligen has been tried by thousands and GcMAF is newer...so i would defintely choose ampligen myself.

 

[Nielk]

Thanks Daffodil.

 

[Spring]

Hi Nielk,

Maybe the Gc Maf Responses sheet will help you:
https://spreadsheets.google.com/ccc...iV2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0

I think I would choose Ampligen because I saw patints saying it gave them their lives back and they move around the USA with their whole families to get it (NIH conference). But because I have no access to Ampligen I try Gc Maf. I've only had 4 injections so far so I can't tell you anything usefull right now.

Wish you and the patint you're asking for the best,

Spring

 

[Nielk]

Thanks Spring,

That spreadsheet link was very interesting.
Good luck to everyone who is on it.
The spreadsheet doesn't show any results or side effects. Maybe it's too early for results?

Thanks for the info.

Does anyone know what biomarker besides XMRV+ is an indicator of a high responder to Ampligen?

 

[ukxmrv]

Nielk, we are told to have the RNASEL test before we would be considered for Ampligin in the UK (this is years ago, I had the test and then the drugs was withdrawn)

 

[Nielk]

Nielk, we are told to have the RNASEL test before we would be considered for Ampligin in the UK (this is years ago, I had the test and then the drugs was withdrawn)

Hi ukxmrv,
Why was it withdrawn? do you know?I know that there are some controversies with Hemisphrx and supplying Ampligen, I just don't know the the real hard facts about what happened in the past and I am very surprised that the FDA has not approved this drug that has been studied for so long and supposedly had some success rate.

If anyone here has any information for me, please let me know.

It's not an easy decision to shell out a ton of money to try Ampligen and I know that at first you feel sicker so before i make a decision, I would like to be as informed as possible.

So far, I have gotten opinions from extreme spectrums. I do know that there are people who have been on it and have been turned around. I also know that they can't stay off for too long because it comes back. There are others that it didn't work at all for. Are there people who have permanent damage from trying it?

Any information you could supply would be much appreciated.

Nielk

 

[ukxmrv]

NielK,

I'm not going to be of much use to you. The politics of this drug have been interesting and complicated to follow but I don't know of any hard data on who responds/ is made worse/gets better. I've spoken to people from all spectrum's of response to Ampligin but it is only anecdotal evidence. If I has the money I would have tried Ampligin at the time at people I knew who had become sick in the same 80's epidemics of a viral onset disease had been responding to it at that time.

Yes, there are patients who say that they were permanently damaged from trying Ampligin. I don't personally know any of them.

The doctor in the UK who was going to offer it was working with Kenny DM in Belgium. There was a dispute with the company who made the drug and agreement could not be reached. Sorry no other news other than gossip from that time.

 

[Nielk]

Thanks ukxmrv.

 

[Daffodil]

if you like, you can message me privately and i can put you in touch with 2 people who love ampligen, saying it gives them their lives back.

 

[Sushi]

Thanks sushi,

How are you doing on the GcMAF? I know that there is a very long thread on it but it's daunting to start reading it from start to finish. If you have a couple of minutes can you tell me how long you have been on it? Do you feel any positive response? Do you have adverse reactions especially in the beginning? Lastly, are you taking it alone or with Nexavir? Anything else?
I would appreciate any information.
Thank you,
Nielk

Hi Nielk,

It is hard to summarize and also hard to know what is going on "under the surface." And the spreadsheet is great but I don't think many of us remember to update it regularly and it only reveals some basics

I am due for my 20th injectionof GcMAF today--that is 20 weeks. I took GcMAF on its own for 17 or 18 weeks and then added daily Nexavir, Hydrox B12 injections, VSL-3 and I've done one of three scheduled courses of antibiotics for the gut.

So it is sometimes hard to separate what agent is responsible for what symptom change. While I was taking GcMAF alone, I definitely felt progression in my level of stamina and ability to handle more physcial activity--I could be out doing errands for hours with no PEM.

Adding Nexavir and the other things is adding other elements to the picture. I noticed within a couple of days, more detox, probably die-off and more days of just not feeling so good. As Nexavir works, in some ways, as an antiviral and I am loaded with them, I'd guess I am struggling with some effects of dealing with viruses. My immune system tests very over-active and at the same time not very functional.

I am probably also stimulating the methylation system with the addition of these new elements and I have worked with it more directly before and always got a lot of detox symptoms. I'd guess this is happening again.

Though I have a few more days a week that I don't feel so good (after the addition of Nexavir and the others), I find that I can still do a full hour of an intense pilates class followed by errands, without suffering after-effects. So I'd guess that the GcMAF is continuing to benefit me but I am now also dealing with increased detox/die-off.

I am (according to Redlabs) a low responder on both Fok and BSM in the Vit D receptor. Because of this, KDM thought I would need a lot more weeks of GcMAF to really tell how much it was helping me. On that schedule, I am possibly about half way through the GcMAF injections but will need Nexavir and other things much longer.

I imagine that at some point I will have some retests to check for changes that I can only guess at now from how I feel.

Best wishes,
Sushi

 

[Nielk]

Thanks sushi so much for your detailed answer to me.
I'm glad to hear that you see improvement on the GcMAF! I also understand the problem when you add different things in the mix it's hard to know what is really working but, if you already had a good response to GcMAF on it's own then you know that as a fact. Die off of toxins is also not new to me and it makes sense as long as it doesn't last too long.
Good luck with your ongoing treatment.
It sounds like KDM ( who I heard speak here in the US years ago) has a good grasp of this cocktail of treatments and the fact that you can test before you start if you are a good candidate for it is also very useful.

My doctor here in New York is starting an open study both with Ampligen and GcMAF. That's why I'm trying to find out as much as possible about both to see which one (if any) I should try.

They are both expensive but, Ampligen is more. I am so desperate that I would spend the money if I would feel that I have a strong chance of improving. I understand though that what I am asking is really impossible to predict.
With Ampligen it seems that they have a 30% success rate but, this number is not an official number. These reports are very murky. I know of some people who have had miraculous recoveries with Ampligen. Here too on the forum there are some.
It could be that we know all the people who have had miraculous recoveries and that amounts to less then 10 people.
The company, Hemispherx says that they tested so far 500 people with Ampligen. This amounts to 2%. So you see it is all really confusing.

Sorry to rattle off like that. Just trying to figure things out.

Again, thanks for your reply,

Nielk

 

[LaurelW]

I saw a video of Dr. Enlander this morning where he said in his experience, the number of people who are helped by Ampligen is greater than 50%. You could probably get some kind of figures from Dr. Peterson's office since he's been doing it for so long, if they would be willing to disclose them. I'll ask Dr. Bateman next time I see her (probably Friday) if she has any idea who responds better.

 

[Nielk]

I saw a video of Dr. Enlander this morning where he said in his experience, the number of people who are helped by Ampligen is greater than 50%. You could probably get some kind of figures from Dr. Peterson's office since he's been doing it for so long, if they would be willing to disclose them. I'll ask Dr. Bateman next time I see her (probably Friday) if she has any idea who responds better.

Thanks LaurelW. I wonder where he got those figures from. I guess I can ask him. When I asked him a few weeks ago, he said he didn't know. Maybe Hemispherx shared their info with him?

 

[mojoey]

Just started a public ampligen spreadsheet so that we can better monitor the progress of patients on amp. http://tinyurl.com/3zly3ks This crowdsourcing approach has been very helpful for providing a firsthand perspective at the usefulness of GcMaf for ME/CFS.

Please fill it out if you have been on amp or are on amp, and please spread the word to any other patients you know that are the same.

 

[Nielk]

Thanks Mojoey for stting up the spreadsheet to keep track of people on Ampligen. So far, No one has sttarted inputting any data.
I have spent the past two entire days going through the more than 1,500 posts on the GcMAF thread. It was very interesting and thank you to everyone who participated and took the time to update the rest of us with their personal information, experiences and trials.
I thought that after reading all this information, I would have a better picture as to the efficacy of using GcMAF and if it's worth the cost and the side effects for the possible positive outcome.
I have to say that it's very hard to judge. The personal experiences are so variant that it's realy hard to predict who is going to have a good response. Even though people are told to take a blood test to see if they are good responders, it has no guaranty. First of all there is a question whether that test is even accurate and further more there doesn't seem to be a real correlation between the result of that test and the actual success of the patient on the trial.
I am so impressed with everyone who tried or are still taking this treatment because it's not a walk in the park.
It's expensive - people go through all kinds of side effects and keep at it with the hope that at some point it will all be worthwhile. Many people have success stories and those are great to hear. Others are doubtful with some benefits and some adverse reactions. There are people who either had to stop it either they couldn't take the adverse effect or they didn't respond at all. It's very hard to tell what the real percentage of successes there are. There is a spreadsheet for it but the problem is that not everyone writes in their data or they don't update it.
This is not an exact science and everyone is different with many different cofactors.
I think that even though the information I have gotten is mixed I will try it because if i don't I'll always think that maybe if I would have tried it it would have helped me.