Any Ampligen updates?

Woozy

Woozy

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lenora said:
Hi @halcyon....Yes, the Raggedy Ann Syndrome was certainly used, as was the Yuppie Flu (that did great harm to anyone affected...and for that we can thank a well known magazine and the accompanying article. I do believe that was one of the reasons we weren't taken seriously in the beginning...The Yuppie Flu).

We had a lot of different names within a short period of time and that certainly didn't help us. Made us look like fools even. Yours, Lenora
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Lenora, I heard that a lot (some or a lot lol?) of people with ME/CFS in Lake Tahoe epidemic were given Ampligen, Why is this drug not used then to cure people? WE don't have it here in the UK. Can you tell us about what you know happened there with this drug. Thanks
 
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lenora

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Hello @woozy......I'm going to ask our man of greater knowledge @Pyrrhus, to answer this question. I live in Dallas, TX. and did so at the break of the Lake Tahoe epidemic. My husband was the first one to put two and two together and realized that I was mainly ill b/c of this epidemic. Plenty of other people in the Dallas area were also.

Interfering problems for me included recent surgery for a neurological illness, Syringomyelia, followed by contracting two serious viruses, one after the other, so I was literally frozen in my body. Only recently had neurologists even been made aware of these other conditions....and b/c so little was known about SM at the time, later followed by surgery for a related syndrome, Arnold-Chiari Malformation, I wasn't given any of the drugs used for the Lake Tahoe patients.

I do have books on that outbreak, and if @Pyrrhus doesn't have the answer, then I'll try to find it out for you. I actually thought I had AIDS (blood transfusion) and thought I was going to die. (Which wasn't scary, almost relief). I was young at the time, horrible years....but I survived it somehow. I'll give @Pyrrhus a chance to answer. He's good at this sort of thing. Yours, Lenora.
 
Woozy

Woozy

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Pyrrhus said:
Ampligen came a bit later than the Lake Tahoe outbreak. The best account can be found in the book Osler's Web:
https://books.google.com/books/about/Osler_s_Web.html?id=DDEQAQAAMAAJ
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OK thanks but I was sure that Dr Cheney or the other one gave Ampligen to some of them, BTW, I have written to Parliament in the UK about ME v CFS because I guess the UK does not believe in Byron Hyde's theory of enterovirus only as the cause of ME compared to other pathogens being the cause of CFS. From my experience, even CFS people (well in my case PVFS) have neurological dysfunction too, I did. II could not remember words, I could not concentrate, I had sometimes ataxia and i had a loud tinnitus. However, I recovered some 16 years later and I have been pretty well for the last decade. No one ever found the infective agent for the Royal Free or Lake Tahoe epidemics anyway so how come Hyde KNOWS that they were enterovirus? And even if they were there is only evidence of temporary dysfunction not permanent like Hyde says I think. I also failed the Romberg stance,
 
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lenora

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No, I don't recall that ampligen was used on the Lake Tahoe victims. Actually, there were no meds (that I can recall). I also developed fibromyalgia at about the same time. I was just incredibly fortunate that my neurologist knew about both of these conditions (which are common in people with many spinal and brain conditions). Even at that, the only drug known to help was low dose elavil (and old anti-depressant). Ace ice packs work best for stubborn pain and/or muscle relaxation.

We have an arsenal of drugs compared to back then. Not all will work, give them a chance...a month at least. One is usually started on a low dose and increased from that. I'm presently on lyrica, which also helps with my anxiety....gabapentin was the first truly useful drug. Lyrica is an off-shoot of gaba.

I agree...."Osler's Web" was the first book detailing the outbreak at Lake Tahoe. It's a large book, is old now, but the facts remain the same. I have it....a collection of books on what is now known as ME/FM. Symptoms have waxed and waned over the years. Some have remained, while others have disappeared or become something else. Good luck as you move forward. Yours, Lenora.
 
halcyon

halcyon

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lenora said:
No, I don't recall that ampligen was used on the Lake Tahoe victims.
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Dr. Peterson’s clinic has been one of the main study sites for Ampligen clinical trials for many years. It looks like he was possibly the first clinician to use it, back in 1988. I don’t recall which documentary or news piece it was, but I definitely recall seeing a video that spoke with one of the original Tahoe outbreak victims who was taking Ampligen.
 
Woozy

Woozy

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halcyon said:
Dr. Peterson’s clinic has been one of the main study sites for Ampligen clinical trials for many years. It looks like he was possibly the first clinician to use it, back in 1988. I don’t recall which documentary or news piece it was, but I definitely recall seeing a video that spoke with one of the original Tahoe outbreak victims who was taking Ampligen.
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Yes I said I was sure they used Ampligen in Lake Tahoe. Thanks for confirming. About Ampligen, it is supposed to rectify a fault in an enzymatic pathway in the immune system called R NaseL. It was reported many people with ME/CFS have a faulty R Nase L. I had a test in Brussels in 1992 but it was normal so I was not offered Ampligen. There are some people who say Ampligen saved their lives on Wiki but only a handful of people are on there (about 10). I would have thought after 30 years of using it on CFS they would know for sure if it worked on ME/CFS and who the people are that would benefit. I find it strange they are doing a trial now almost 30 or 35 years later. Oh well.
 
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lenora

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Research into this illness was slow to begin with mainly b/c of the AIDS epidemic. Young people were dying everywhere, so that's understandable.

The govt. was very reluctant to spend more money on immune system problems; thus we languished for many years. Many of us tried to change the situation and provide some sort of help and guidance for sufferers. In the beginning it was thought that one particular virus caused the problem, now we know better. Even though the researchers are better trained, it's an onerous task. We're the same with SOME of our symptoms, yet different with others.

Great progress has been made in other areas. In the beginning we had the telephone, or at best a newsletter to even confirm that we existed. Believe it or not, the NIH had very little....I have no idea of what is offered today.

I know I repeat this often, but it's important that new people understand that there have been many, many improvements over the years. True, chances are they won't benefit someone my age, but they will younger patients. Don't take one study as being "it" the goldmine. It will take far more than that. Today we have clinics and knowledgeable surgeons and doctors....true, you may have to look, but you'll find them. It's harder if you're in small towns.

People who volunteer are usually ill themselves, are expected to have all of the answers and we had to put up with many angry patients. Burnout is a problem....but most will return to do the work. I can't any longer, but do keep my interest(s) alive. We're now worldwide organizations where in the beginning we were local, at best. Phone nos. were freely exchanged.....and times changed. We kept learning and growing, you'll do the same. Just become part of the forward movement. Yours, Lenora..
 
Woozy

Woozy

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57
woozy said:
Yes I said I was sure they used Ampligen in Lake Tahoe. Thanks for confirming. About Ampligen, it is supposed to rectify a fault in an enzymatic pathway in the immune system called R NaseL. It was reported many people with ME/CFS have a faulty R Nase L. I had a test in Brussels in 1992 but it was normal so I was not offered Ampligen. There are some people who say Ampligen saved their lives on Wiki but only a handful of people are on there (about 10). I would have thought after 30 years of using it on CFS they would know for sure if it worked on ME/CFS and who the people are that would benefit. I find it strange they are doing a trial now almost 30 or 35 years later. Oh well.
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Update: Cort Johnson on his website said that Lombardi, who ran the lab doing the R NaseL tests, said that it was an artifact this test. In other worse, the test itself broke up the R NAse L enzyme so I presume giving a false result. I often wondered why Meirleir left Brussels Hospital to go to the Whitmore Institute in Nevada, Maybe that;s why if he could not prescribe Ampligen. I checked on Red Labs, and R NAse L is not offered anymore. How strange this saga is.m Always believed R Nase L was faulty in ME even though my result in 1992 was normal LOL
 
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lenora

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HI Woozy....Thanks for your reply (and explanation).

As said, I have had overt symptoms of ME/FM for the years since the Lake Tahoe outbreak. Over the years, I've seen many research "answers" that have taken on new life....perhaps this is one of them. Often it takes many, many research reports to convince the medical establishment or even the FDA to give approval to something.

Again, many of the original results were disproven, then with new technology have been given new credence. I know that at one time a simple medication called guafenesin was thought to be part of the Holy Grail....well, then it did nothing for the vast majority of people. However, what it did do was to help those with allergies, so here I am still taking it all of these years later. No, it's definitely not a cure but does help with some symptoms. It's for sale OTC now, and I take the pure form of guafenesin only.

Larger studies are best. Good luck in finding help in some form or another. Yours, Lenora
 
E

EEPHBS

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Paraprosdokian said:
It's been approved for use, but it's still awaiting approval for import. I suspect that approval is never coming...
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Does anyone (especially @Pyrrhus) have any updates on this matter or any clue how someone might receive Ampligen in Argentina? Also, does anyone know how the process works for applying to the FDA for expanded-access or compassionate-use Ampligen?
 
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