ampligen

[Guest guest]

Someone asked about a week ago (sorry, I don't remember who) why

Kaiser, the first Ampligen patient, went off the drug after 5 years.

was given no choice. She received a call in September of 1993 telling her

that her supply (she was infusing herself at the time) would be cut off.

When she spoke to Dr. Strayer, she was told that they already had all the

data on her that was needed and " you're of no use to us now. " The five years

she was on Ampligen cost her $100,000 and the drug, itself, was free! But

infusions cost money and the tests they had her undergo had to be paid for by

her. And the testing was much more in-depth testing than is now required by

the company. She had 5 (!) neuropsych tests, a number of MRIs, treadmill

tests, etc. She was getting three IVs weekly. After the first years, she

had to buy all the supplies herself in order to infuse herself.

Another question, I think by the same person, asked why she stayed on the

drug for so long. She had no improvement, but the last two years were the

very worst. But she was told repeatedly that she had to stay on to get

better and that time would come. She was afraid of going off and continuing

to decline. Yet, when she was forced off the drug (and all patients were

taken off then), she said she just can't describe how much worse she got.

Dr. has even lied about her in a patent he took out. He

stated in that patent that she was a professional golfer (she never was, but

played a mean game of golf and enjoyed it tremendously...but had a handicap

of 18 so felt that was insulting to other pros) and was totally

self-sufficient. 's husband takes care of her. Jim has been wonderful

through all of this and now Jim has an " atypical " type of Parkinson's.

It was also asked why she refused to go back on the drug when it was recently

offered. She replied, quite honestly, " I'm not a retard! "

Another patient she still talks to frequently from the same trial was

recently told she has a foruth stage cancer and they still can't locate it.

Neither of these two women are senior citizens when the things that are

happening to them are in a statistical count.

As to 's last post about my knowing about her websites, it's true I knew

OF them, but had no idea what the URL was nor have I ever been to any of

them. It seems kind of silly to post to the group that I just was clueless!

(which I often am!!!)

I don't really spend much time online. I don't have the time for it, so

surfing is one thing I've never done except for in the Atlantic ocean many

moons ago.

Someone also (sorry, again forgot the name....that's a mind thing that CFIDS

has helped highlight) mentioned Prozac. A few years ago, Dr. Klimas

did a study on Prozac and found it helped the most those patients who showed

no depression. She wanted to enlarge the study and publish it, but Eli Lilly

wasn't agreeable to funding it. The dosage, however, is important. If you

feel jittery, like you're going to jump out of your skin but don't have the

energy to do it, then you're way too high. My daugher began at 20 mgs. and

went down to 4 to find her best level! Sometimes, even that is too much, but

she's better with it than without it. Once Dr. Bell had taken her off of it

for two weeks when she had to be on some very specific medication that didn't

mix well with it. After that problem cleared, he said to her, " I'll bet you

didn't even miss the Prozac. " I told him I noticed the difference and if he

didn't want her to go back on it, she'd have to move into his house! He

laughed but immediately filled her prescription! Her irritation level

increases dramatically without it.

Gail

[Guest guest]

In a message dated 1/8/00 12:53:22 PM Eastern Standard Time,

moores@... writes:

<< thanks for your interesting report. what other meds are you on? can you

get some men on amp to get on this list

Steve

>>

Hi Steve,

Was this post meant for me? I will assume it is and we all know what that is

possible of making me. ( :

Firstly.....May I inquire as to why men? Are you lonely or do you have more

faith in a non-hysterical person? Just pulling your leg but still curious.

Secondly....You men with this DD are rare as you know. There were two in my

trial and yes, I will attempt to contact them and ask them if they would

contact the list, as you requested. I am not a pessimistic person, but I do

know that many of the previous ampligen patients go underground, so to speak,

due to personal reasons. This I know from attempting to be a liaison between

the two groups for the CAB that never could meet in the middle.

Thirdly.....Curious as to why you asked the medicines I'm on of me....But,

have nothing to hide. My excellent internist does not consider himself a GOD

on a pedestal but gladly reads all that I bring him concerning CFIDS and

Chiari. Also, when I pleaded for assistance in tapering the many harmful

drugs, that I had taken which were prescribed by my ampligen administrator,

he and a pharmacist all assisted. I am proud to say I am off of MS Contin,

Soma and Phrenilin. I've been told by a person doing ampligen research post

trial, that I am one of two that kicked the MS Contin. I credit the support

of my God, the above medical experts, and my wonderful family.

I certainly did not want to go for Chiari surgery and not have any pain meds

that I would respond to from building up a chemical resistance.

Thank you for your response and hope to hear more informative news from you.

Cheryl

[Guest guest]

In a message dated 1/8/00 12:24:16 PM Eastern Standard Time, Aglady1@...

writes:

<<

Territorialism, possessiveness, and accusations of political maneuverings

simmered for a short while then came to the surface in an ugly boil. I was

accused of not caring about patient safety, of being a puppet manipulated by

the drug company, and of being driven by my own selfish financial needs.

When I pressed my accusers for specifics that would substantiate their

accusations, I was ultimately told it was the PERCEPTION that I had a

secondary agenda that had stirred up their anger.

The people you are talking about in this post, , are:

Ray Colliton, list owner of Co-Cure

Elaine Katz, director of the CFIDS Emergency Relief Services

Gayle Babykin, leader of WECAN

Sherryl Jefferies, supporter of CFIDSers

Burns, Electronic Bulletin Board, several lists, and CFS NEWS

and myself, Gail Kansky, persident of the National CFIDS Foundation

who all resigned because we asked specific questions that we all felt were in

the patient's best interest and never recieved an answer....only silence.

And the questions were asked many times. There was also a democratic vote

taken for officers, that was not abided for and you, an appointed leader of

the CAB, continued on, again with silence. This has all been posted in the

past. Your version of " perception " is a far cry from our own reasons for

resigning and, to be fair, I think all these members should be informed of

your post and asked for an answer. The entire post, however, does not belong

on this particular list.

Perception, innuendo, rumor, conjecture -- these are the elements that

legends and fairy tales are made of. No other patient community attacks

its

own and cannibalizes its own in the way the CFS patient community does. >>

Unless you've been involved with other patient communities, you really can't

say this. I recently had occasion to give some very exciting news to those

in the AIDS community. I was totally aghast at the diverse responses from

diferrent leaders that I received. Several insisted that HIV was a figment

of the government's imagination, others were just as diverse in other

directions. Until just one year ago, there were three national MS

organizations, each with their own agenda, and none would work with the

others. This is true of nearly every illness that is existent in large

numbers. Thier in-fighting take a direction more akin to Watergate than hide

and seek.

Gail

[Guest guest]

thanks for your interesting report. what other meds are you on? can you get some

men on amp to get on this list

Steve

[Guest guest]

Steve:

I will pass the word among male Ampligen patients - there may be someone out

there who is open to sharing his experience.

In answer to your question about meds, I am taking fewer these days besides

Ampligen. I use bronchodilators for asthma (pre-existing) and meds for high

blood pressure (pre-existing), klonopin at night (down to 1/4 mg from 1 mg

pre-Ampligen). Other than that, I take claritin and benedryl as needed for

allergies, and tylenol for pain. Oh yes, and multivitamins.

Anyone may share my email address with others (responding to a question from

Ken).

[Guest guest]

Gail:

You opened the box, Gail, not I.

Your group did not " ask specific questions " and " never received an answer. "

June 14, 1999, Ray Colliton, on behalf of the other people whose names you

listed in your post, faxed me a list of demands that I was supposed to agree

to by 3 pm the following day. Here are Ray's words, verbatim: " If you do

not agree to these points, at 3:00 p.m. EDT tomorrow the five people who I

represent will leave the CFIDS CAB Formation Project and work for the safe

delivery of Ampligen to the CFIDS community in whatever way they wish to do

so. " This was not a democratic arena. I was given demands to meet by a

deadline, or else. This sounds more like a threat than a democratic process

to me. How about this quote at the end of the same fax: " You may want to

know how negotiable these points are. Unfortunately, the answer is that they

are not negotiable. " I was given no opportunity to respond, only to

acquiesce. The fax was sent only to me, not to anyone else on the committee.

Where was the democracy in this action?

You write, " there was also a democratic [there's that word again!] vote taken

for officers, that was not abided for and you, an appointed leader of the CAB

continued on, again with silence. " I wasn't appointed, Gail. I was duly

and unanimously elected by the people who attended the May meeting, including

and Sheryl and Ray.

Every conference call and committee meeting was taped and carefully

transcribed by the committee secretary. She has the spoken and written

records of everything that was said and by whom, and of every discussion and

every action taken.

Regarding divergent views within patient communities, I am not speaking of

differences of opinion within communities, I am speaking of the venomous,

destructive attacks on the integrity of individuals whose ideas are different

from the attackers', those whose views do not match theirs. This behavior

threatens our survival as a patient community. I do have experience with

other patient communities, and I have never seen in any other patient group

the cannibalistic behavior demonstrated by certain very vocal members of our

CFS community.

Your group sent this list of demands privately to me, you did not cc it to

anyone else on the committee, and you told me if I did not

I'm not talking about the tension that comes from individuals holding

differences in opinion, I'm talking about venomous, destructive personal

attacks on the integrity of people whose ideas are different from the

attackers'.

It was Ray Colliton who told me it was.

[Guest guest]

I did not mean to offend it is just that the only folks who have reported on

amplegin have been women & yes it is lonely being a man with CFS.

As far as other med are concerned I am simply interested on what other meds may

be combined with amplegin to get the maximum benefit?

Steve

[Guest guest]

Re: Re:Ampligen

> As far as other med are concerned I am simply interested on what other

meds may be combined with amplegin to get the maximum benefit?

I am told by a patient in Europe that Dr DeMerlier said he believes that for

those patients who test positive for mycoplasma, a course of abx to clear

that problem up first, or even concurrently with Ampligen, may prove to be

beneficial. To my knowledge this cannot be tested, until the Phase III

trials are completed, since the purpose of the Phase III trials is to

determine optimum dosage protocol for Ampligen and thus requires that

patients be " flushed " of all other drugs so as to reduce variables to a

minimum.

This is one of the reasons the completion of Phase III is important.

--Bob Grommes

[Guest guest]

In a message dated 1/8/00 9:36:19 PM Eastern Standard Time, Aglady1@...

writes:

<< Your group did not " ask specific questions " and " never received an

answer. "

June 14, 1999, Ray Colliton, on behalf of the other people whose names you

listed in your post, faxed me a list of demands that I was supposed to agree

to by 3 pm the following day. >>

Many questions had been asked for many days preceeding this and never

answered. There was just no response at all. However, you seem to forget

that I was not a part of this initial group and did not withdraw initially

with them. After the deadline of this group passed at " 3 p.m. " , I got a call

from you, , and Dave (the AIDS representative, to anyone trying to

understand) and was offered a position of chairing a group for patient's

rights. I was told I could designate any three doctors I wanted to be part

of this cmmittee for the CAB. I played quite innocent and asked, not once,

but several times in several ways if this position would go beyond the first

meeting of the CAB. (The first meeting was an organizational one that was

supposed to " elect " chairs there democratically.) I was assured each time

that it would be ongoing. The call came quite late in the evening. The next

day I posted to the gruop that this, too, was not in keeping with the

democratic procedures and I finally was convinced that the group of

Burns, Ray Colliton, Elaine Katz, etc. were right. I joined their group in

protestation.

Ray has posted a question for you on the CAB list. He asked where the CAB

stood now. If it has become something for patients only...etc. The meeting

that was postponed from July until September has never taken place. You

haven't answered (as yet.....) this post either. None of us resigned from

the list, just from our positions. Nobody has been updated. Nothing has

ever been posted on this list in months, except for a very occasional

question that is never replied to. What is the answer?

The same scenario written here has already been explained on this list when

was the listowner and I was the moderator under her rules until she

returned. I don't know if these archives still exist, but you are free to

check them. The extensive story was also reported by another in The National

Forum.

Where does the CAB stand now? Is it a group limited to patients of Ampligen

only? Does this include just present ones, if so? Or is it still

functioning at all? When will it meet? Why hasn't it already met?

Gail

[Guest guest]

Moderator Christie, Gail, , & All Concerned:

I think anyone interested in the Ampligen debate should also have the

right to read the political arguments and circumstances that led to the

deconstruction of the CAB. I know many don't want to read about it, but

I do want to hear all sides. If anyone doesn't want to read anymore,

just keep the delete button at the ready. Please, just don't interfere

with the rest of the list's rights to find out what happened.

April

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[Guest guest]

Is there any testing for ISAC (hemex) being done also?

It seems logical that the following are all tested first:

Lyme using LUAT (especially after the Florida CFS experience see

http://www.folkarts.com/idef/lyme_and_cfs.htm )

General Mycoplasma

Immune System Activation of Coagulation

And then (and only then)

RNase-L deficiency

... resulting in Ampligen

The one test that I wish there was a 'real' treatment for is alkaline blood. As

far back as 1931, it was found to be very common in Asthmatic children (and

mycoplasma infections is believed to be a factor in Asthtma too) -- and let

there appears to be no treatment - just symptom relief (tablets to have with

meals to help with digestion) AND no research into the exact mechanicism.... as

Cheney's said, he was taught to ignore it at med school!

Ken

[Guest guest]

Christie:

You are absolutely right. This list is for open and honest discussion of

treatments, NOT for contentious political discussion. I had no intention of

going into detail about the destructive political infighting that derailed

the CAB project. Rehashing the infighting is not healing, nor is it a

positive step toward creating the entity that will best provide for safety,

information and recourse for patients participating in Ampligen trials. What

I allowed myself to be drawn into with Gail only releases the venom again. I

apologize for my role in letting things get out of hand. There will be NO

more political talk from me on this subject.

[Guest guest]

Hi,

This issue is out of hand - again. Treatment with ampligen is absolutely

allowed. Anyone speaking of the politics of this issue, or attacks those who

speak about their experiences with ampligen

will be banned.

Christie

[Guest guest]

Hi,

While I do agree with you, there has been too much animosity about ampligen and

its politics that I just sent a note not allowing this talk here. If anyone

disagrees please provide feedback - this

list belongs to all of us. An alternative might be to take this discussion to

the CFIDS-activist list.

Chrisite

April L Tyree wrote:

> From: April L Tyree <tyree.pines@...>

>

> Moderator Christie, Gail, , & All Concerned:

>

> I think anyone interested in the Ampligen debate should also have the

> right to read the political arguments and circumstances that led to the

> deconstruction of the CAB. I know many don't want to read about it, but

> I do want to hear all sides. If anyone doesn't want to read anymore,

> just keep the delete button at the ready. Please, just don't interfere

> with the rest of the list's rights to find out what happened.

>

> April

> ________________________________________________________________

> Y

[Guest guest]

In a message dated 1/8/00 7:30:48 PM Eastern Standard Time,

moores@... writes:

<< From: " Dr. Steve " <moores@...>

I did not mean to offend it is just that the only folks who have reported on

ampligen have been women & yes it is lonely being a man with CFS.

As far as other meds are concerned, I am simply interested on what other

meds may be combined with amplegin to get the maximum benefit?

Steve >>

Steve,

Sorry, I missed your post and question. I credit Immnunocal in my case

during the last three months in keeping my head above the water, as I was one

of the very few non-responders that did not keep sinking. I drink two

packets a day with soy milk. The brand WESTSOY has vanilla, chocolate and

plain that is tasty. In fact I stay on a high protein-low carb diet to keep

the glucose at an even keel.

So, if immunocal did that for me, then one can surmise and hope that for an

ampligen responder, the results would be even better. Isn't Chaney doing a

blind trial study on this?

Cheryl

[Guest guest]

In a message dated 1/8/00 8:25:16 PM Eastern Standard Time, Aglady1@...

writes:

<< From: Aglady1@...

Steve:

I will pass the word among male Ampligen patients - there may be someone out

there who is open to sharing his experience. >>

,

You could put Steve in touch with the Steve that was in the 511 cost-recovery

trial with me. Backchannel me if you want to contact him per permission.

He was on ampligen for 24 months and was doing fairly well, and then went

home and stated he felt " like burnt toast " when I last had contact with him.

I hope he is doing better.

Cheryl

[Guest guest]

Have we discussed Ampligen here yet?

if so, just point me to the old postings ..

doris

...............................................................

<cut>

Subject: ? Ampligen, antiviral and immunemodulator

Listmates:

My son autistic symptoms are helped greatly by Valtrex, improved

processing, interaction, eye contact and processing. This leads me

to believe his autism is mostly due to a herpes type virus. I have

read recently about studies with this drug Ampligen and recovery for

patients w/ debilitating CFS. From what I inderstand, it is an anti-

viral as well as an immunemodulator. I was wondering if anyone has

heard of it being used w/ kids w/ autism.

Thanks,

nne