What does Ampligen's effectiveness tell us in light of the latest research?

[Jeremy C.]

Never looked at it before, but I found this:

Neither Ridostin or Larifan are in the same class as Ampligen (see Table 1): http://cancer.cytoluminator.com/cancer-photodynamic-therapy/interferons inducers russian study.pdf

Polyguacil is, but seems available only as eye drops and for injection into the retina.

You can't buy Ridostin online that I can find, but Larifan seems readily available.

http://www.larifans.lv/index.php/en/lariphan-activity

And this is very interesting:

https://www.ncbi.nlm.nih.gov/pubmed/?term=Lariphan

 

[LaurelW]

Are you saying that Imunovir has allowed you to maintain the gains you made on Ampligen, @LaurelW?

When I stopped Ampligen I relapsed, not to the point I was at before treatment (which was completely bedridden), but went from being completely physically active back to being housebound.

Yes, that is what I'm saying. But remember that it's only been four months since I switched. We'll see in the long term if it's still working.

 

[Jesse2233]

@Jeremy C.

Do you know if Biocolones currently have any patients in Australia, South Africa, or elsewhere currently using Ampligen?

 

[Jeremy C.]

Yes, that is what I'm saying. But remember that it's only been four months since I switched. We'll see in the long term if it's still working.

Okay. That's still good to hear though. My relapse came pretty much as soon as the Ampligen infusions ended.

 

[Jeremy C.]

@Jeremy C.

Do you know if Biocolones currently have any patients in Australia, South Africa, or elsewhere currently using Ampligen?

Unfortunately Bioclones is no longer making Ampligen. I don't know what is happening with the company, but I have had difficulty contacting them.

 

[wastwater]

I never knew ampligen worked by increasing interferon as I've just found out I likely have a gene called IRF4 missing

 

[Jesse2233]

I never knew ampligen worked by increasing interferon as I've just found out I likely have a gene called IRF4 missing

How did you discover that?

 

[wastwater]

I have a rare genetic disorder axenfeld riegers syndrome and IRF4 is one of the cluster of genes affected in some presentations of ARS 6p25

 

[Jesse2233]

I have a rare genetic disorder axenfeld riegers syndrome and IRF4 is one of the cluster of genes affected in some presentations of ARS 6p25

Ah I see, how does that relate to interferon?

 

[Jesse2233]

Hey @Jeremy C. meant to ask you...

Was your onset sudden or gradual?

Did you have any enterovirus / autoimmune testing or brain imaging done?

What are/were your cognitive issues like?

Trying to contextual the huge benefit you had from Ampligen, Ampligen's mechanism of action, and Dr Hyde's findings on CNS damage / limbic inflammation

I know it's n=1, but would still be interesting to know

 

[wastwater]

IRF4 is interferon regulatory factor 4 beyond that I'm not sure if or how it would relate to Ampligen

 

[Jeremy C.]

Hey @Jeremy C. meant to ask you...

Was your onset sudden or gradual?

Did you have any enterovirus / autoimmune testing or brain imaging done?

What are/were your cognitive issues like?

Trying to contextual the huge benefit you had from Ampligen, Ampligen's mechanism of action, and Dr Hyde's findings on CNS damage / limbic inflammation

I know it's n=1, but would still be interesting to know

My onset was gradual, following EBV. I continue to have immune issues. The things that really cause major declines now are viruses, which I catch really easily. I was doing quite well in 2015, but a nasty virus in early 2016 knocked me back to bedridden/housebound and I am still to recover from that. I get recurring bacterial infections as well. However, when I was bedridden and for many years after the Ampligen I didn't actually come down with any viruses, or wasn't fighting them anyway. That is a recent development, so something has changed, I think since I started using GcMAF. I don't recall getting sick while I was on Ampligen, which makes sense given how much it ramps up the interferon.

According to my doctor, I don't display any autoimmunity, but that's just from standard tests.

I have never been tested for enteroviruses.

Have had a brain SPECT scan that showed impaired blood flow to the brain.

I've had terrible cognitive issues. In the years I was bedridden, before the Ampligen, I couldn't even follow a sentence. Cognitive issues improved out-of-site on Ampligen: I was back studying at University towards the end of the trial. They got worse again when the trial ended, but like many things never as bad as they were beforehand.

 

[Jesse2233]

That is a recent development, so something has changed, I think since I started using GcMAF

Interesting, has GcMAF been helping?

Have had a brain SPECT scan that showed impaired blood flow to the brain.

That squares with Hyde's work and is also encouraging becuse its an another indicator that the damage isn't permanent.

I've had terrible cognitive issues. In the years I was bedridden, before the Ampligen, I couldn't even follow a sentence. Cognitive issues improved out-of-site on Ampligen: I was back studying at University towards the end of the trial.

Amazing!! Would be interesting to have seen a SPECT scan at that point

Thanks for sharing all this

How long were you ill before Ampligen, and what age did you recover?

 

[Jeremy C.]

Interesting, has GcMAF been helping?

Yes, it's had a good, though very gradual effect over time and has especially helped my brain fog. I believe it's got my viral load down and as I said, I seem to be fighting colds etc. now. No real effect on my physical condition though, which has only been declining. I don't feel it's given me more energy either. But probably the most helpful thing I've tried since the Ampligen.

How long were you ill before Ampligen, and what age did you recover?

I was ill for five years before Ampligen, completely bedridden for four years (there is some overlap with the treatment because Ampligen made me worse for the first six months). I was 28 when I started Ampligen. It took some time to recover and rehabilitate while on it, as I have posted I think earlier in this thread. I was 30 when I returned to university and the trial ended (and I relapsed) not long after that.

Thanks for sharing all this

No worries. I hope it gives some people some hope. It's just such a pity Ampligen isn't more readily available so pwME could find out whether it is going to help them or not.

 

[JollyRoger]

So what's your opinion about the cause?
Was it the antiviral or the immunmodulatory effect?
A virus or autoimmune?

That would be interesting for the further treatment.
Did you already try plasmaphersis or immunadsorption?

 

[John Mac]

https://www.ptcommunity.com/wire/he...gen-manufacturing-and-scientific-capabilities

PHILADELPHIA, May 31, 2017 (GLOBE NEWSWIRE) -- Hemispherx Biopharma (NYSE MKT:HEB) ("Hemispherx" or the “Company") announced today that it continues to build its manufacturing and scientific capabilities with the promotion of Carol Smith, Ph.D., as the Chief Manufacturing Officer and Deputy Chief Scientific Officer.

In this new role, which is critical to the company’s plan to increase Ampligen® production, Dr. Smith will be responsible for all manufacturing processes of Ampligen® and Alferon® to satisfy the Early Access Program (EAP) for pancreatic cancer and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as well as U.S.-based compassionate care programs such as AMP-511. She will work closely with Dr. David Strayer, Chief Scientific and Medical Officer, to assist in managing the Company's scientific, technological, and research operations.

Some additional info here:
http://www.stockhouse.com/news/pres...pharma-repurposes-ampligen-in-immuno-oncology

 

[denmarkk]

@Jesse2233, @Jeremy C. , @LaurelW, and others on this thread. Just wanted to say how much I appreciate you starting and contributing to this thread. It's great to see so many testimonials from so many Ampligen users in one place. I'm OGrover from Reddit (one of the posts you cited). I have a different Reddit handle now so I don't mind revealing myself.

Rereading my old post made me cry because I had forgotten how sick I was. I've been off Ampligen for ~1 3/4 yrs and I would try it again if I could. My health slipped back a little, but then at a glacial rate began improving again. I'm still housebound, but many symptoms have abated.

I made the mistake of wanting to talk about Ampligen when I joined PR and was called a company plant. LOL As if Hemispherx has their act together enough to have representatives on patient forums! They don't even answer their phones sometimes. The push back made me hesitant to broach the subject again.
(For example, Ecoclimber stated: "I do have problems with patients signing on PR for the first time and then make their first posts stating how effective Ampligen has helped them @@denmarkk without any verification on the vailidity of such a statement.")

@Jesse2233, in your exhaustive search you probably saw this webpage, but just in case you or others didn't: http://me-pedia.org/wiki/Ampligen It has a section with links to patients' experiences - good, bad and ugly.

 

[Jesse2233]

@denmarkk

thanks for getting in touch and sharing! is there anyway for you to get back on Ampligen now?

I'm certain you're not a plant from Hemispherex

If you read @Jeremy C.'s posts he didn't get the full (very major) effect until 2 years in

 

[denmarkk]

@denmarkk

thanks for getting in touch and sharing! is there anyway for you to get back on Ampligen now?

I'm certain you're not a plant from Hemispherex

If you read @Jeremy C.'s posts he didn't get the full (very major) effect until 2 years in

No, I don't think so. When Dr. Enlander stopped being a provider, I was "removed" as a AMP511 trial participant and much to my chagrin, am no longer eligible. Dr. Podell (NJ) agreed to be a provider for me, but Hemispherx was at the height of their chaos what with Carter being fired, austerity measures being put in place, supply shortages, legal suits about the price increase, another doctor quitting the study, the FDA demanding Phase II be repeated, etc. They would not approve the transfer. Dr. Strayer was in favor but the rest of the Board said no. I just think they were in such turmoil that that couldn't handle one more demand on them. It was easier to cut me loose.

Since then I haven't been very hopeful I'll go back on. After reading their marketing history ( http://me-pedia.org/wiki/Marketing_History_of_Ampligen ) I realized that they keep making agreements to license distribution to other companies in other countries and yet nothing happens. All their announcements about reaching agreements here and there never have amounted to anything. I know a Canadian who had to move to NC to get Ampligen from Dr. Lapp despite it supposedly being "legal" in Canada.

 

[Jesse2233]

@denmarkk

That is so frustrating. I imagine you would run into the same issue if you tried to get transferred to Dr Peterson's AMP511 group. As I'm sure you know it's currently approved in Argentina and available as early access in Europe, but to my knowledge there are no doctors using it in either location.

Have you heard anything about future US trials or an expansion of AMP511? And does it seem like things have stabilized under Equels?