Re: ampligen

[Guest guest]

In a message dated 12/29/99 2:35:39 PM Eastern Standard Time,

schweit2@... writes:

<< From: Schweitzer <schweit2@...>

I think it has alreaedy been well-established that Gail Kansky and the

National CFIDS Forum are against Ampligen, so let's just assume that

anything I say, Gail will have a negative response to. Okay?

No, Gail is not against Ampligen, but FOR the truth and we haven't had a lot

of that coming from Hemispherx Biopharma or HEM during all the years of

testing. I don't feel it's fair to have any patient opt to try an

experimental drug without making a decision based on all the knowledge that's

out there.

Now, I am prejudiced. Ampligen has changed my life for the good, and I

believe that this is such a hellish disease, that if it helps ANYBODY,

we ought to be open to making it available for as many of us as

possible, and let the PATIENTS CHOOSE.

I agree completely, but have the patients CHOOSE with the full

information---the good along with the bad---that we presently have. There is

no reason on earth as to why the company has not done a followup on the first

patients who took Ampligen. They are all available (except for two who are

now deceased) but have never been contacted. It's a very inexpensive way to

have a long-term follow-up and could be so helpful in knowing if the drug is

a good product.

I hate to have to play ping pong and keep responding -- but here it is:

1. When the FDA refused to allow Ampligen to move to the next level of

experimental drug, Hemispherx almost went bankrupt. They could not

afford the level of Phase III that they are doing now until very

recently. They had to go to Europe to run the tests that were used to

show the FDA that there was no evidence of major toxicities (so they

could get approval for the Phase III), because they could not afford to

run the studies here. This is the problem with a small pharmaceutical

that has only one product. The theory is that pharmaceuticals can use

the monopoly profits they get off selling their major brand name drugs

at very high prices, to pay for the experimentation required for the FDA

for their new products. But if it's a small company, they can't afford

it. It's not just Hemispherx -- this is endemic to the entire biopharm

industry.

You kind of left out that there was a law suit against Ampligen's

manufacturers before they left the country and before they said they felt

they would not have enough money. The lawsuit was by patients who had been

told they would have the chance to remain on Ampligen if they completed a

trial, but never got it. The judgment was in favor of the patients, but they

never got the product even though the court ordered it. Instead, the company

balked until they finally moved out of the country.

It is perhaps the opinion of Gail and the NCF that Hemispherx COLULD

have afforded it all along if they had truly wanted to -- well, that's

opinion. The only thing that they could have done that I am aware of is

sold the patent -- for virtually nothing, since it is worth nothing

uyntil the Phase III is over -- to a larger pharmaceutical.

invented the drug; he wants the profits from it. That's the system we

live with. If you have objections to it, object to the whole system.

The NCF and Gail do not have an opinion on this, although most are fully

aware that none of the stockholders at the time were suffering. When

patients were in agony and they (HEM) was claiming it had no money, their

owners were still be chaffuered around to their yaughts.

Whether or not there's somethign that tehy could have done, I point

again to the case of the medication that patients with ALS have been

using that is going to be taken off the market because the small

manufaturer can't afford all the testing the FDA wants -- it is NOT just

Ampligen and Hemispherx; this is a problem that is industry-wide.

You are entitled to disagree with me if you want, Gail. I remain

angry at the FDA myself. Then again, I'm the one who has to pay

$20,000/year to Olsten Nursing to give me the infusions and another

$5,000 out of pocket for testing and doctors' fees (the drug is $15,000

for the year). Perhaps if you had to pay that much for something that

you felt was giving you back your life (or your daughter's), you too

would be a bit cranky about it.

I could never afford that but my daughter WAS offered Ampligen free a few

years ago along with a few strings attached (naturally). At the time, I had

a list of questions that I asked the then PR person for HEM to get answers

to. He was nice enough to tell me the truth....that the company refused to

answer those questions. We declined their invitation. Without those answers

(not ones it was impossible to answer) I would not put my daughter at risk.

However, you seem to think that the NCF, Gail, and Gail's private life are

all one and the same. They aren't. The NCF and I do have one thing in

common....our quest for the real truth. And all of it. I once told that to

one of HEM's main stockholders, C. Burrows. ( " I want the full truth

about this illness. " ) He blanced and quietly said, " No, you don't, Gail. "

This winter's edition will prove that I was quite serious, that we have dug

up a lot of the truth about what this illness really is, and I am not unhappy

that it was done. You can't address the problem correctly unless you know

what you are attacking. With this information to become public with the

publication of our newsletter by the end of January, it will become all too

apparant why there is no cure, why Ampligen cannot ever offer a cure, and

what must be done to turn this all around.

Since you don't take this drug, never have taken this drug, never

intend to take this drug, then frankly I wonder just whose side you are

on when you absolve the FDA of responsibility for dealing with us as

PATIENTS, not as purchasers of a marketed product (as if we were buying

Tums over the counter).

I don't absolve the FDA " of reponsibility for dealing with us. " In fact, I

feel the FDA has done an especially shoddy job of dealing with Hemispherx.

They could be much more helpful to patients by asking for a long-term study.

They could have already given an authorization to a drug that will actually

help everyone much more than Ampligen is capable of and also help every AIDS

patient as well. I, in fact, am quite furious with the way the FDA has

conducted itself and have been trying to deal with them in another arena.

The patient always comes first for me.

2. No, AIDS testing is nowhere near at the level that CFS testing is.

It doesn't matter. They have approved products for AIDS on the

fast-track basis before they've even gotten to the Phase II! (Let alone

the phase III, where we are).

Actually, they've been just as horrible to those with AIDS. And it's not

just the FDA, but the government health agencies at large. They've known for

many years why some patients can be HIV positive and totally asymptomatic for

the rest of their lives and they've known how to attack the problem of AIDS

as well. The CDC even did a study on this years ago and then buried the

paper quite well. It isn't even listed on on medical search, but we were

fortunate to get a copy from a researcher who had filed it years ago. The

only meds that the FDA has fast-tracked for AIDS are those that are highly

toxic and will not cure them. They know the way to a cure is NOT to attack

HIV itself. They also know letting this out will also release many secrets

of CFS. This is what Regush's book is all about. It is also what

our next edition is all about. Truth. The real truth. Frightening, but

necessary because it CAN all be turned around. And it won't be turned around

with ABXs or other tried methods. I feel the patient has every right to know

all this.

I am sorry that the NCF chooses to spend so many pages trying to keep me

from being able to get ahold of a drug that I think is saving my life.

Now, if YOU don't want to take it, DON'T. But I've said it before and

I'm saying it again -- STAY OUT OF MY LIFE, GAIL. Just whose side ARE

you on? I can't imagine an AIDS activist doing this. But then again,

you have a financial interest in other products, don't you?

No, I have no financial interest in other products. I own no stocks of any

drugs for any illness. My only profession which I had to give up when I

became too severe was teaching and writing children's books (I only got to

publish one.) I haven't been in your life.

As for the AIDS people, I've always taken a great interest in that as well.

One of my closest friend's sons died of AIDS while still in college. He was

a hemophiliac and had grown up next door to my children. However, it is a

total fabrication that the AIDS activists all agree and all do the same

things or believe the same things. I've never seen quite as much dissention

as that in the world of AIDS. It makes us seem like kindergardeners!!! But

the NCF has only printed the truith and has backed up every article that

could cause some dissention with material that is offered to our members on

the source and background of our information. You seem to want to talk

negatively about the NCF and of me as if we are one and the same. I am only

one person. The NCF is a group of now thousands in just a few short years.

I am just one board member. I do not have control of everything that the NCF

does nor of everything it chooses to do. Our volunteers are people who are

patients or have close ties to patients. None are paid. None have a

financial interest in any drug (including myself) nor would it be tolerated.

I don't know where you've gotten these ideas nor why but they are totally

unfounded. Sorry you're a " little livid. " I remain extrememly livid....but

not with you and not with one particular drug, but of the truth that has been

kept from us for so many years and the deception that has gone on. I did not

post the website of the former Ampligen user that was recently posted nor had

I been aware of this website. I feel you have taken affront to things that

should not be aired on this list. I apologize to any participants who may

have been stressed about this. If you care to ask any questions of me, ,

do backchannel or call me. This is not the place to air your own grievances.

Patients merely want to get better, myself and those relatives I have with

this illness (yes, more than just my daughter) as well.

Gail

Schweitzer, a little livid.

schweit2@...

-- >>

[Guest guest]

In a message dated 12/29/99 6:18:15 PM Eastern Standard Time, corina@...

writes:

<< I went to Amazon and looked at the book description for The Virus Within by

Regush, but it seems to be about HHV-6. I tested negative for

HHV-6 with a blood test. Does that mean I don't have it, or is it another

test that is not reliable (like lyme, etc)?

Our website has an application (http://www.ncf-net.org). But there are no

realiable blood tests (yet) for HHV6) and many patients of Drs. Constance

Knox and Danel Carrigan's tested negative 5 or 6 times....until the doctors

looked at the spinal fluid and found it easily! But HHV6 isn't the real

story, it's what HHV6 really is and how many have known about it for years.

And it isn't applicable to everyone with CFIDS, just to about 80%. There are

others that will also " just " have mycoplasmas or clamydia pneumonia. Of

course, many with HHV6 will have those, too.

Also, what is your connection to the book? (Just curious cos you said " we "

a lot in your message.) >>

We have no conection whatsoever to the book. The only time our paths crossed

with Nick Regush's was when he was investigating material for the book and we

were doing the same thing (but not as authors!!!). He's talked to one of our

medical advisors at length because of all he found out and because it not

only has so very much to do with AIDS but with CFS/ME as well. He's given

permission to print an article of his in our newsletter, but, other than

that, there's no connection. We're just really happy that he was looking

(and found) what we were looking for and validated our information as well.

Although, we wouldn't mind if he donated a small percentage to research!!!!

Gail

[Guest guest]

I think it has alreaedy been well-established that Gail Kansky and the

National CFIDS Forum are against Ampligen, so let's just assume that

anything I say, Gail will have a negative response to. Okay?

Now, I am prejudiced. Ampligen has changed my life for the good, and I

believe that this is such a hellish disease, that if it helps ANYBODY,

we ought to be open to making it available for as many of us as

possible, and let the PATIENTS CHOOSE.

I hate to have to play ping pong and keep responding -- but here it is:

1. When the FDA refused to allow Ampligen to move to the next level of

experimental drug, Hemispherx almost went bankrupt. They could not

afford the level of Phase III that they are doing now until very

recently. They had to go to Europe to run the tests that were used to

show the FDA that there was no evidence of major toxicities (so they

could get approval for the Phase III), because they could not afford to

run the studies here. This is the problem with a small pharmaceutical

that has only one product. The theory is that pharmaceuticals can use

the monopoly profits they get off selling their major brand name drugs

at very high prices, to pay for the experimentation required for the FDA

for their new products. But if it's a small company, they can't afford

it. It's not just Hemispherx -- this is endemic to the entire biopharm

industry.

It is perhaps the opinion of Gail and the NCF that Hemispherx COLULD

have afforded it all along if they had truly wanted to -- well, that's

opinion. The only thing that they could have done that I am aware of is

sold the patent -- for virtually nothing, since it is worth nothing

uyntil the Phase III is over -- to a larger pharmaceutical.

invented the drug; he wants the profits from it. That's the system we

live with. If you have objections to it, object to the whole system.

Whether or not there's somethign that tehy could have done, I point

again to the case of the medication that patients with ALS have been

using that is going to be taken off the market because the small

manufaturer can't afford all the testing the FDA wants -- it is NOT just

Ampligen and Hemispherx; this is a problem that is industry-wide.

You are entitled to disagree with me if you want, Gail. I remain

angry at the FDA myself. Then again, I'm the one who has to pay

$20,000/year to Olsten Nursing to give me the infusions and another

$5,000 out of pocket for testing and doctors' fees (the drug is $15,000

for the year). Perhaps if you had to pay that much for something that

you felt was giving you back your life (or your daughter's), you too

would be a bit cranky about it.

Since you don't take this drug, never have taken this drug, never

intend to take this drug, then frankly I wonder just whose side you are

on when you absolve the FDA of responsibility for dealing with us as

PATIENTS, not as purchasers of a marketed product (as if we were buying

Tums over the counter).

2. No, AIDS testing is nowhere near at the level that CFS testing is.

It doesn't matter. They have approved products for AIDS on the

fast-track basis before they've even gotten to the Phase II! (Let alone

the phase III, where we are).

I am sorry that the NCF chooses to spend so many pages trying to keep me

from being able to get ahold of a drug that I think is saving my life.

Now, if YOU don't want to take it, DON'T. But I've said it before and

I'm saying it again -- STAY OUT OF MY LIFE, GAIL. Just whose side ARE

you on? I can't imagine an AIDS activist doing this. But then again,

you have a financial interest in other products, don't you?

Schweitzer, a little livid.

schweit2@...

[Guest guest]

Gail Kansky wrote:

> .. there was a law suit against Ampligen's manufacturers... by patients

who had been told they would have the chance to remain on Ampligen if they

completed a

> trial, but never got it. The judgment was in favor of the patients

There was another lawsuit against Ampligen. offered Ampligen

to and AIDs patients several years ago if the patient would pay

$1-million. promised the patient he would be cured of AIDS. Not

only did the patient fail to improve, he grew worse. The patient sued

and won. perhaps another reason for HemispheRx near bankrupcy.

This story was told in a major national magazine several years ago.

Any person with access to Lexus-Nexis can find the story.

Bonnes

[Guest guest]

, you're right. We found that it was reported on in the late 80's by no

less than CNN, but the full information about HHV6 wasn't known at the time

and the government managed to bury it all along with us, too.

Gail

[Guest guest]

Hi Gail and all,

Gail wrote:

>You can't address the problem correctly unless you know

>what you are attacking. With this information to become public with the

>publication of our newsletter by the end of January, it will become all too

>apparant why there is no cure, why Ampligen cannot ever offer a cure, and

>what must be done to turn this all around.

So, how do we get a subscription or copy of this newsletter, Gayle?

I went to Amazon and looked at the book description for The Virus Within by

Regush, but it seems to be about HHV-6. I tested negative for

HHV-6 with a blood test. Does that mean I don't have it, or is it another

test that is not reliable (like lyme, etc)?

Also, what is your connection to the book? (Just curious cos you said " we "

a lot in your message.)

Thanks for the info. :-)

Corina

--

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Like to read? Check out BookChat, my online reading group for PWCs and

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[Guest guest]

At 06:28 PM 12/29/1999 EST, you wrote:

>From: GAILRONDA@...

> The only time our paths crossed with Nick Regush's was

when he was investigating material for the book and we

>were doing the same thing (but not as authors!!!).

He's talked to one of our medical advisors at length

because of all he found out and because it not only

has so very much to do with AIDS but with CFS/ME as well.

========

wasn't there a lot of talk years ago about how hiv does

not progress into aids without HHV6? sort of like the

two push eachother into worse behavior than they would

alone? a perfectly diabolical version of synergy?

nancym

He's given

>permission to print an article of his in our newsletter, but, other than

>that, there's no connection. We're just really happy that he was looking

>(and found) what we were looking for and validated our information as well.

>Although, we wouldn't mind if he donated a small percentage to

research!!!!

>

>Gail

>

>>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

In a message dated 1/3/00 10:27:25 PM Eastern Standard Time,

MCamp10139@... writes:

<< Does anyone know of ANY other drug that is proven to be effective if only

taken

for 6-9 months or longer? >>

Yes, there are many that are effective within that time frame but not in the

field of CFIDS as yet. Ampligen has not been proven to be effective over a

short or long term. It has only been proven to help some patients for the

time they are on it. Getting information from those who had been on it (a

long-term follow-up) would help a great deal. There are few, if any, drugs

that don't do this with testing and even that has not proved to be infallible

which causes drug recalls to this day.

Gail

[Guest guest]

Prof. Nicolson's protocols call for up to 18 months.... and I buy into it -

not because of the " deeply embedded infection " aspect, but because of the

model that I am using....

see http://www.folkarts.com/idef/duration.htm

The diagrams illustrate (using mycoplasma by name -- but that is strictly a

matter of convience for the brain fogged) a realistic model of the

difference between symptom relief and cure...

With some evident suggesting a 7 month INCUMBATION (i.e. going from 100% to

85% or ~ 2% per month), then if you are down to 50% (which some are!!)... a

cure may follow the reverse curve... so 50%/2% = 25 months (ugly... but

logical)..

Ken

PS. Prof Nicolson has 100% relapse with only 6 months of antibiotics..

----- Original Message -----

From: <MCamp10139@...>

> Personally, I think any treatment that takes more than a few months to be

> effective, much less 5 years, has to be questioned.

> Does anyone know of ANY other drug that is proven to be effective if only

> taken

> for 6-9 months or longer?

>

> Mike

>

> > This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

People must take medications (Antibiotics) for TB for 9 months to a years or

more to prevent or cure TB.

The dosage of insulin must be taken for life and the dosage adjusted

sometimes daily to see benefit.

Some medications your body builds up a tolerance to them and you must

discontinue them and restart them to see the same effect.

The way the medication works in the body is key in determining when it begins

to work.

Sydney

[Guest guest]

Is there any way to get the major acedemic medical centers involved in these

trials.

Steve

[Guest guest]

In a message dated 1/4/00 10:08:19 AM Eastern Standard Time,

onelist writes:

> People must take medications (Antibiotics) for TB for 9 months to a years

or

>

> more to prevent or cure TB.

Yes, this is a very good example of a long term abx treatment for a medical

condition

that is proven effective. Thanks for setting me straight. However, I

believe that most

TB sufferers get some relief from their symptoms within a couple of weeks or

months, the rest of the treatment is to make sure the bug is killed. It is

still hard

for me to believe that Ampligen must be used for 9 months or so before a

patient

IMPROVES, not recovers.

Mike

[Guest guest]

In a message dated 1/4/00 1:38:38 PM Eastern Standard Time,

onelist writes:

> " I would love to have anyone who feels Ampligen does not help people with

> CFIDS to fly into Reno and I would drive you up to Incline to see with your

> own eyes, hear from your own ears, the laughter of patients from the hall

> ways outside the infusion room as they are getting better. You will see

> people now driving their own cars, taking the stairs instead of the

> elevator. It is not a cure, and not claimed to be one, but a good medical

> treatment option for many. "

>

> But everytime one of the patients posts anything positive to this list,

they

> are summarily attacked.

Could it be re Ampligen that we have a case of when people get better, they

go on

with their lives and don't really broadcast their positive results? But when

there is a

negative outcome, the individual feels a responsibility to warn everyone and

the

bad info gets passed around ten times as much as the good.

Mike

[Guest guest]

In a message dated 1/3/00 11:49:21 PM Eastern Standard Time,

onelist writes:

> With some evident suggesting a 7 month INCUBATION (i.e. going from 100% to

> 85% or ~ 2% per month), then if you are down to 50% (which some are!!)... a

> cure may follow the reverse curve... so 50%/2% = 25 months (ugly... but

> logical)..

> Ken

Come on Ken. Give me any other disease where the incubation period has

anything

to do with the treatment period. The incubation period for TB is days to

weeks and the

treatment is 9 months. Sorry, can't buy your reasoning on this one. Tying

treatment

time to incubation period is NOT logical. However, my original question has

been

answered. TB does require abx for 9 months but as I said, the patient gets

better

well before the 9 months are up.

Mike

[Guest guest]

In a message dated 1/4/2000 4:11:06 PM Pacific Standard Time,

bgrommes@... writes:

<< It takes years for the syndrome to develop >>

I am not sure what you mean by this. For many, cfids develops overnight.

[Guest guest]

In a message dated 1/4/00 7:11:07 PM Eastern Standard Time,

onelist writes:

> It is still hard for me to believe that Ampligen must be used for 9

> months

> or so before a

> > patient IMPROVES, not recovers.

>

> Why? It takes years for the syndrome to develop -- why would you expect to

> fix the problem, undo the damage and have all the interrelated body systems

> " snap out of it " in a matter of 2 weeks? I would actually be skeptical of

Bob, I capitalized the word 'improves' to mean that I thought if Ampligen

were going

to help, that someone would notice SOME (maybe just slight) improvement before

9 months. I am convinced that it may take 9 months or two years to

substantially

recover using Ampligen (if indeed it does help at all), but wouldn't you

agree that

someone using it should see SOME improvement within nine months? If I were

paying $40,000 per year, or $3,400 per month, I don't think I would continue

the

treatment for more than 9 months without getting just a little better. Would

you?

And who said anything about two weeks?

Mike

[Guest guest]

In a message dated 1/4/00 7:07:02 PM Eastern Standard Time,

MCamp10139@... writes:

<< Could it be re Ampligen that we have a case of when people get better,

they

go on

with their lives and don't really broadcast their positive results? But

when

there is a

negative outcome, the individual feels a responsibility to warn everyone and

the

bad info gets passed around ten times as much as the good.

>>

Actually, Mike, the opposite of that is true. There will be another story of

past Ampligen users coming out late this month in our newsletter. This

people were on the first trial ever held and it tells of their health

complications right now. None are better. None actually are even improved!

In fact, of the majority we contacted, they were all worse than before the

drug. None, by the way, had ever been contacted for a follow-up. The

company has wonderful pr and they " request " that their patients say positive

things to the FDA, patients, etc. I've become the battering board because I

edit the newsletter, but, most of the articles have not been authored by me!

I wish there were more advocates for other issues of CFIDS like those on

Ampligen currently! We could use a lot more speaking out about the bad rap

this illness has been given, the categories the psychobabblers place us in,

etc.

Gail

[Guest guest]

Re: Ampligen

> It is still hard for me to believe that Ampligen must be used for 9 months

or so before a

> patient IMPROVES, not recovers.

Why? It takes years for the syndrome to develop -- why would you expect to

fix the problem, undo the damage and have all the interrelated body systems

" snap out of it " in a matter of 2 weeks? I would actually be skeptical of

something that worked on this particular disease that fast. And in any

case, PWCs regularly tolerate many therapies that improve symptoms to a

degree that's often hard to distinguish from a placebo effect. PWCs have

learned to take what they can get, where and how they can get it.

--Bob Grommes

[Guest guest]

Re: Re: Ampligen

> In a message dated 1/4/2000 4:11:06 PM Pacific Standard Time,

> bgrommes@... writes:

>

> << It takes years for the syndrome to develop >>

>

> I am not sure what you mean by this. For many, cfids develops

overnight.

Good point, I wasn't being clear. My own wife is a sudden-onset case, so I

understand this. However, I had in mind the larger picture of the various

stages of CFIDS that have been described by Cheney and Hyde. It takes years

to get to what Cheney calls phase III -- where most of the physical damage

is done and things are somewhat stable. My point is that the damage from

CFIDS -- to the immune and nervous systems -- is massive, and as time goes

on, the interplay of damaged systems feeds on itself and gets more complex.

Thus one would expect it to take longer for the body to repair itself.

Personally I also suspect that Ampligen combined with other treatments, such

as abx, may be required to get some people to a point where they can

function without maintenance doses; but we aren't far enough along to do

that kind of research.

It would be interesting to know if there is any proven relationship between

time-since-onset and the length of time before symptoms ease. So much

remains to be learned.

--Bob Grommes

[Guest guest]

Re: Ampligen

> Bob, I capitalized the word 'improves' to mean that I thought if Ampligen

> were going

> to help, that someone would notice SOME (maybe just slight) improvement

before

> 9 months. I am convinced that it may take 9 months or two years to

> substantially

> recover using Ampligen (if indeed it does help at all), but wouldn't you

> agree that

> someone using it should see SOME improvement within nine months?

Oh, I don't think it takes very long to pick up hints. For instance, here's

the experience of one person on Ampligen:

http://www.cfids-me.org/lang.html - Lang

I first knew for certain that I was responding positively to Ampligen about

a month into treatment. My husband and I were sitting at the kitchen table

working out the logistics of getting our youngest son, Calen, who also has

CFIDS, through the last semester of his senior year in high school, to

graduation in June. I was prioritizing what needed to be done, and in what

order, on paper. My husband put his hand gently on my arm as I was writing.

I looked up at him and said, " What? " He smiled and said, " You're coming back

to me, my wife is coming back! " I knew then that Ampligen was working for

me. I could see it in my husband's face.

Here's another one:

http://www.cfids-me.org/aacfs/ampligen.html#woolman -- Stuart Craig Woolman

The first sixteen weeks show in an increase of 8 KPS points: 58 to 66. The

second sixteen weeks show an increase of 6 KPS points: 66 to 72. The third

sixteen weeks show an increase of 5 KPS points: from 72 to 77. The last

eight weeks show an increase of about 3 KPS points. The total KPS increase

of the first 56 weeks is 22 points in raw terms. ....my clinical response

over this initial 56 weeks of treatment is steady, progressive, incremental

improvement

[Guest guest]

There is a basic tenant of marketing. If a person is happy with a product they

tell one person, if they are dissatisfied they tell 10 people. And with the

internet the 10 becomes 10,000.

I am agnostic on ampligen and I will wait not only for the results of the study

but for the critique of those results.

LOL

Steve

[Guest guest]

In a message dated 1/4/00 6:56:00 PM Eastern Standard Time,

MCamp10139@... writes:

<< Yes, this is a very good example of a long term abx treatment for a

medical

condition

that is proven effective. Thanks for setting me straight. However, I

believe that most

TB sufferers get some relief from their symptoms within a couple of weeks or

months, the rest of the treatment is to make sure the bug is killed. It is

still hard

for me to believe that Ampligen must be used for 9 months or so before a

patient

IMPROVES, not recovers.

Mike

>>

Mike,

The people that are taking antibiotics for PREVENTION of TB disease take it

for 9 to 12 months. These people do not have any signs of illness at all.

Just evidence that they have been exposed to TB germs.

People that are taking antibiotics for treatment of an active case of TB take

antibiotics for 12-18 months and often more than one antibiotic. These

people may or may not have signs of TB they notice. They do have signs of TB

on x-rays though. The idea is to prevent the damage the sooner the better.

Sydney

[Guest guest]

Sorry I'm late responding to this, but I've been down in Orlando all

week with my family -- had a FANTASTIC time!

" Lassesen " <KenL@...> writes:

> May I butt in with a 'sword of ' ....

> I can find many personal website of people who

> have tried many things and who have become " cured " by

> doing X Y and Z (myself included ;-)... I

> have NOT been able to find any (non-corporate PR) site

> for an Ampligen patient that praise it's miracle salvation

> from CFS...

>

> If you know of any, please email them to me... I've looked

> without any success ...

A bit disengenous of you, -- you know I'm on Ampligen! For

those who are new, I kept my first six months on Ampligen in diary form

on a website that is here:

http://www.cfids-me.org/marys/ampdiaries.html

I've been bad since then -- now that I have a life again, I just haven't

had time to add to the diary online (though I still keep a handwritten

version) -- so, in case you're wondering after reading the first six

months -- I'm STILL on Ampligen, now 11 months in, I'm STILL doing very

well with no major side effects (I tend to run a slight fever on it, in

the 99's, and that's about it for side effects).

My only dilemma is what I do come February 4, when I will have been on

it a year. It is costing my family $40,000 (mostly for the cost of the

twice weekly IV infusions) -- which is kind of expensive. But I don't

want to stop! I am continuing to improve, and I was so terribly,

terribly ill.

If you look at back digests of this list since Christie took over

moderating it (I guess after Thanksgiving, 1999 -- not really sure when

I rejoined), which are available at onelist.com, you will find several

stories of patients doing well on Ampligen.

We were forbidden to post to this list through most of 1999, so I had

created a list where you could talk about ALL experimental treatments,

including Ampligen, without being censored -- that was called

CFSMEexperimentsonelist, and although the list itself is closed

down, the archives are still available here:

CFSMEexperiments

You will also find positive accounts of Ampligen at this website, which

I created a year ago:

http://www.cfids-me.org/nonv-cfids/ampligen5/

and at the Ampligen panel that was presented in October 1999 at the

AACFS research meetings in Boston, Mass.

http://www.cfids-me.org/aacfs/ampligen.html

You will be told by some that there are those who are afraid of telling

negative stories (and of course they won't name names) -- well, I can

tell you that I was PERSONALLY threatened for telling positive stories

about how Ampligen has helped me. But I don't threaten easily, nor does

my family.

Here is a brief testiment to how Ampligen has changed my life:

This time last year my New Year's was very depressing. My daughter's

high school band was in the Rose Bowl Parade, and my husband went out to

L.A. with them as a chaperone, but I had to stay behind here in Delaware

because I was WAY too sick to go. They had to arrange for a neighbor to

check in on me every day and provide me with food. I could not drive; I

could barely walk and needed a wheelchair outdoors; I could not read a

newspaper article or anything else of any length.

This New Year's Eve I spent at Universal Studios with my family. I

spent six hours walking around the park and going on roller coasters

(the Disney parks had closed by 9 am, but apparently no one knew

Universal was still open because the rides had no waits!) -- then my

family made me give in and get an electric wheelchair, probably a good

idea as the park was getting very crowded and there would be no place to

sit for the fireworks. But after that, I went back to the parks three

days in a row, walked EVERYWHERE, and didn't have to use a wheelchair

again!!

I was a bit sore after the first day, rather as if I had been skiing --

but to my own surprise, I'm fine today. We got back from Florida

yesterday, and I had my first Ampligen infusion in a week this morning.

It's the first time I've skipped an infusion since I began back in

February 1999 (I skipped Monday's so I could stay a whole week). As I

mentioned above, I'm really concerned about continuing to afford this --

it IS expensive.

But it has been a miracle for me. And there are quite a few people --

my family, my neighbors, and my friends at the University of Delaware --

in the Business School where my husband teaches, or the Athletic

Department where we've long had friends -- who can attest to what a

miracle this has been.

I still don't have the stamina or strength for a full-time job -- but I

have gone from a Karnosvky scale score of 30 (and declining) to 60 or 70

(and improving)! That's quite a change. I started walking again in

March, started driving again in May. Dr. Ablashi believes that the

significant HHV-6a infestation that he diagnosed me as having a year ago

(and was gone six months after starting Ampligen) had caused viral

encephalitis, and many of my symptoms were indeed encephalitic. THOSE

symptoms are gone. I'm slowly weaning myself from many of the drugs I

had to take -- but I may have to stay on thyroid and NMH meds. At any

rate, Dr. Ablashi said I shouldn't expect to recover overnight from

having been so sick so long, and I believe he is right.

Note: I do carry the defective 37kDa RnaseL protein (if you want

further information about that, try my websites here:

http://www.cfids-me.org/redd/

for links, and here:

http://www.cfids-me.org/marys/redd.html

for an essay). I believe that the 37kDa, which is the marker Dr.

Suhadolnik discovered at Temple University in 1995, is a key to both the

etiology of this disease AND the reason that Ampligen has worked for

me. I can only hope that there is funding to speed up the research on

both the 37kDa and Ampligen.

Now - just out of curiosity, how long HAVE you been on this

list? Did you conveniently forget about me because I was offline for a

while and you thought I wouldn't respond?? And I KNOW that Gail Kansky

knows about my websites. I guess she just forgot, too.

Schweitzer

mailto:schweit2@...

" Lassesen " <KenL@...> wrote:

> May I butt in with a 'sword of ' ....

>

> I can find many personal website of people who have

> tried many things and who have become " cured " by doing

> X Y and Z (myself included ;-)... I have NOT been able

> to find any (non-corporate PR) site for an Ampligen

> patient that praise it's miracle salvation from CFS...

>

> If you know of any, please email them to me... I've

> looked without any success ...

>

> Ken

[Guest guest]

You must be geninuely better - using a word like disengenous - is inconsistant

with brain fog.

I came onto this list just at the end of the last Ampligen 'exchange' and truly

did not know/forgot about your website. I found that my ability to make/keep

memories was severely impacted during CFS and part way into the recovery period.

It has improved and I will not forget it (and have added it to my website).

Welcome back and thank you for putting me in my place. I shall face the corner

tonight in penance.

Ken.

----- Original Message -----

From: Schweitzer

A bit disengenous of you, -- you know I'm on Ampligen!

[Guest guest]

If you know a nurse or a doctor who would do the infusions free would the cost

of Ampligen be much lower?. If that is true do you know any single female Drs

who really want to get married.

Steve