Re: Saul's CJD

[Guest guest]

Which iatrogenic cases are ever proved 100%? How could you prove it 100%?

The CJD Saul had or anyone has does not contain a marking that indicates it

was due to a specific cause. However, Saul did have a product that has been

shown to be an iatrogenic cause of CJD.

<< From: BevAlso@...

DebbieOney writes:

<>

Debbie:

Was Gloria able to determine with 100% positive proof that dura mater caused

her husband's CJD? I may have missed this post.

Beverly G. >>

[Guest guest]

Exactly why the Dr. would never change it to say iatrogenic CJD....

<<

Which iatrogenic cases are ever proved 100%? How could you prove it 100%?

The CJD Saul had or anyone has does not contain a marking that indicates it

was due to a specific cause. However, Saul did have a product that has been

shown to be an iatrogenic cause of CJD.

<< From: BevAlso@...

DebbieOney writes:

<>

Debbie:

Was Gloria able to determine with 100% positive proof that dura mater caused

her husband's CJD? I may have missed this post.

Beverly G. >>

>>

[Guest guest]

There are cases of CJD classified as iatrogenic and none of those are proved

100%.because they can't be for the same reasons Saul's isn't. I think it is

a matter that there is not the documentation. Anyone involved in

classification of cases?

<< From: LArmstr853@...

Exactly why the Dr. would never change it to say iatrogenic CJD....

<<

Which iatrogenic cases are ever proved 100%? How could you prove it 100%?

The CJD Saul had or anyone has does not contain a marking that indicates it

was due to a specific cause. However, Saul did have a product that has been

shown to be an iatrogenic cause of CJD.

<< From: BevAlso@...

DebbieOney writes:

<>

Debbie:

Was Gloria able to determine with 100% positive proof that dura mater

caused

her husband's CJD? I may have missed this post.

Beverly G. >>

>>

>>

[Guest guest]

Debbie:

Then my question to you is this: How could anyone go to their doctor and

insist that their records/death certificate be changed if transmission from

iatrogenic exposure hasn't been proven? What if Saul contracted CJD from

dental work or from eating the wrong thing instead of from a dura mater

transplant?

Beverly G.

[Guest guest]

Bev,

I did not tell Gloria to insist on having the records changed I suggested

talking to her husband's doctors about it. There is a difference. Even if

proof of the use of dura mater is found it does not prove in that was the

cause since the CJD caused by dura mater does not look different than the CJD

due to other causes. (In the FDA transcripts of the October 6, 1997 meeting

it discusses saving samples of the lots of dura mater so that if a person who

had a dura mater transplant comes down with CJD then the dura mater can be

tested to see if it is contaminated by the CJD infectious agent. Of course,

this doesn't prove the person could have had this dura mater and came down

with CJD that the dura mater was the cause. Something else could have been

just like you listed. But if this sampling is done better correlation studies

could be done.) However, there are documented iatrogenic cases of CJD and

the key word is documented. In those cases you cannot prove that the CJD was

caused by iatrogenic cause assigned but you can document that a known material

that causes CJD was used in that person. It is like if someone comes down with

chicken pox. If the chicken pox victim drank out of the same cup 2 weeks

before coming down with the disease and the person whose cup was dranken from

came down with chicken pox the next day the assumption would be that the

person came down with chicken pox as a result of drinking out of that cup.

However, that is not necessarily the case. They may have come in contact with

other people during the incubation period and just not know those people came

down with chicken pox. Many times a person will drink out of the cup of a

person infectious for chicken pox, not come down with chicken pox from that

exposure for some reason and come down with it another time.

And as you see now Gloria is looking into documentation as I hope to do when I

have the time as I have to go do my paid job now.

Debbie

>>Debbie:

Then my question to you is this: How could anyone go to their doctor and

insist that their records/death certificate be changed if transmission from

iatrogenic exposure hasn't been proven? What if Saul contracted CJD from

dental work or from eating the wrong thing instead of from a dura mater

transplant?

Beverly G.>>

[Guest guest]

Bev,

I did not tell Gloria to insist on having the records changed I suggested

talking to her husband's doctors about it. There is a difference. Even if

proof of the use of dura mater is found it does not prove in that was the

cause since the CJD caused by dura mater does not look different than the CJD

due to other causes. (In the FDA transcripts of the October 6, 1997 meeting

it discusses saving samples of the lots of dura mater so that if a person who

had a dura mater transplant comes down with CJD then the dura mater can be

tested to see if it is contaminated by the CJD infectious agent. Of course,

this doesn't prove the person could have had this dura mater and came down

with CJD that the dura mater was the cause. Something else could have been

just like you listed. But if this sampling is done better correlation studies

could be done.) However, there are documented iatrogenic cases of CJD and

the key word is documented. In those cases you cannot prove that the CJD was

caused by iatrogenic cause assigned but you can document that a known material

that causes CJD was used in that person. It is like if someone comes down with

chicken pox. If the chicken pox victim drank out of the same cup 2 weeks

before coming down with the disease and the person whose cup was dranken from

came down with chicken pox the next day the assumption would be that the

person came down with chicken pox as a result of drinking out of that cup.

However, that is not necessarily the case. They may have come in contact with

other people during the incubation period and just not know those people came

down with chicken pox. Many times a person will drink out of the cup of a

person infectious for chicken pox, not come down with chicken pox from that

exposure for some reason and come down with it another time.

And as you see now Gloria is looking into documentation as I hope to do when I

have the time as I have to go do my paid job now.

Debbie

>>Debbie:

Then my question to you is this: How could anyone go to their doctor and

insist that their records/death certificate be changed if transmission from

iatrogenic exposure hasn't been proven? What if Saul contracted CJD from

dental work or from eating the wrong thing instead of from a dura mater

transplant?

Beverly G.>>

[Guest guest]

Bev,

I did not tell Gloria to insist on having the records changed I suggested

talking to her husband's doctors about it. There is a difference. Even if

proof of the use of dura mater is found it does not prove in that was the

cause since the CJD caused by dura mater does not look different than the CJD

due to other causes. (In the FDA transcripts of the October 6, 1997 meeting

it discusses saving samples of the lots of dura mater so that if a person who

had a dura mater transplant comes down with CJD then the dura mater can be

tested to see if it is contaminated by the CJD infectious agent. Of course,

this doesn't prove the person could have had this dura mater and came down

with CJD that the dura mater was the cause. Something else could have been

just like you listed. But if this sampling is done better correlation studies

could be done.) However, there are documented iatrogenic cases of CJD and

the key word is documented. In those cases you cannot prove that the CJD was

caused by iatrogenic cause assigned but you can document that a known material

that causes CJD was used in that person. It is like if someone comes down with

chicken pox. If the chicken pox victim drank out of the same cup 2 weeks

before coming down with the disease and the person whose cup was dranken from

came down with chicken pox the next day the assumption would be that the

person came down with chicken pox as a result of drinking out of that cup.

However, that is not necessarily the case. They may have come in contact with

other people during the incubation period and just not know those people came

down with chicken pox. Many times a person will drink out of the cup of a

person infectious for chicken pox, not come down with chicken pox from that

exposure for some reason and come down with it another time.

And as you see now Gloria is looking into documentation as I hope to do when I

have the time as I have to go do my paid job now.

Debbie

>>Debbie:

Then my question to you is this: How could anyone go to their doctor and

insist that their records/death certificate be changed if transmission from

iatrogenic exposure hasn't been proven? What if Saul contracted CJD from

dental work or from eating the wrong thing instead of from a dura mater

transplant?

Beverly G.>>

[Guest guest]

<DebbieOney@...

Bev,

I did not tell Gloria to insist on having the records changed I suggested

talking to her husband's doctors about it. There is a difference. Even if

proof of the use of dura mater is found it does not prove in that was the

cause since the CJD caused by dura mater does not look different than the

CJD>>

Regarding the documented cases of CJD from infected dura mater, I recall

reading that the proven cases of dura mater contamination (I believe there

were 60 or 65 in the US), they were traced back to a particular dura mater

shipment that had been registered (many other shipments were not registered

and therefore untraceable to particular donors). These few cases that are

documented as having been from dura mater transplants were traced back to a

particular donor who had died from CJD. These are documented cases.

As far as your wording to Gloria on the orginal post in question, I am not

here to argue semantics with you, but below is a copy of the posting you sent

through. I have highlighted in pink where you told her to try to get it

changed.

In my opinion, it is not within the realm of reality to assume that one can

change a doctor's diagnosis based on a suspicion of how a person contracted

CJD. Just because he had a dura mater transplant does not mean that this is

where he definitely contracted CJD. There is not enough information to go on.

Unless Gloria is able to trace the dura mater her husband received to a

specific documented, traceable batch where it is known that the donor died

from CJD (which I doubt very seriously is going to happen!), in my opinion, it

would be just as impossible and foolhardy to insist that hamburger meat from

Winn Dixie killed my dad and have it documented as such.

I am very concerned that as a CJD Voice member, we are opening ourselves up

for legal action (i.e. slander or defamation) if cases such as Saul's are

publicized as being caused from a particular brand of dura mater. We don't

have proof and that is dangerous ground to be treading on with pharmaceutical

companies (or anyone else, including the beef industry, for that matter!).

Debbie, I sincerely hope that you are not using the Voice name or association

when you make these accusations against dura mater companies.

Beverly G.

Subj: Re: Dr. Starr-disease control

Date: 10/26/98 6:04:51 PM Central Standard Time

From: DebbieOney@...

Reply-to: cjdvoice (AT) onelist (DOT) com

To: cjdvoice (AT) onelist (DOT) com

From: DebbieOney@...

Gloria,

That's great about Dr. Starr, that he is nice and interested and has the Voice

website now. I was thinking I bet Saul's case was listed as sporadic CJD

where they don't know the cause. Can you talk to the doctors about changing

it to iatrogenic due to dura mater. Between his and 's aunt and another

possible case with dura mater it would force the FDA to acknowledge that there

have been CJD cases this decade in the US due to dura mater. In the October

6, 1997 meeting on dura mater they did not acknowledge it. Of course, it can

be argued, if no cases, why not continue using it? Also, it is something to

mention to Dr. Starr since he is interested in unusual cases.

Also, it brings up a good idea: notifying all the people in all the states,

provinces, whatever in Dr. Starr's position. I guess it is another project to

get everything covered.

Debbie

[Guest guest]

Bev,

I suggest you reread what you are quoting. A place to start is at the

http://www.cyber-dyne.com/~tom/mad_cow_disease.html " >Official Mad Cow

Disease Home Page ~ Tom Pringle where it discusses the cases. I would

like to see the source of your informaton about coming from particular lots.

>>I am very concerned that as a CJD Voice member, we are opening ourselves up

for legal action (i.e. slander or defamation) if cases such as Saul's are

publicized as being caused from a particular brand of dura mater. We don't

have proof and that is dangerous ground to be treading on with pharmaceutical

companies (or anyone else, including the beef industry, for that matter!).

Debbie, I sincerely hope that you are not using the Voice name or association

when you make these accusations against dura mater companies.

Beverly G. >>

How can I pubicize what brand dura matter was used in Saul's case if I don't

even know? Do you know? Gloria doesn't even know. Second, I have not

pubicized Saul's case anywhere. Asking Gloria about her husband having had

dura mater is different than publicizing particular brands of dura mater which

I have not done. I have never publicized particular brands of dura mater or

dura mater companies. I have only posted articles and webpages and web

reports, which are public, to CJD Voice. I haven't even put them on our

bulletin board. Also, asking scientists about documenting cases of dura mater

use is not publicizing brand names. How can I do that if I don't even know

the brand name. I am insulted by you stating in front of other people that I

am making these public accusations against dura mater companies, which I am

not even doing, and then warning me to not do it using the Voice name or

association. How would I be using the Voice name in doing it if I'm not even

doing it? If you remember Lynette said to not even mention dura mater when

writing to TV programs for now. I have never attacked you personally even

when I disagreed with you and expect the same from you. By the way, the only

reason I am responding to you publicly is to clear my name.

Debbie

[Guest guest]

Dear ladies,

First of all there is no way to track down Saul's case at all. The main

doctor (our internestat the time) has died. The hospital is gone. The

records distroyed. I have no way of knowing anything of that surgery. I do

believe I can obtain Saul's records at UCLA as he was there three years ago in

the month of July. I doubt if these records show anything but the testing

that was done

, which proved nothing. It, these records, will show documation of his

behavior and the diagnosis of Dr. Cummings, really based on observations.

I will not spend the rest of my life trying to prove what it came from. I

know sure as I'm sitting here typing to you, how he contacted cjd.

I must say that Saul would be smiling right now as his 15 minutes of fame is

being repeated over and over.

Ladies, we can't prove anything in Saul's case.

Gloria

[Guest guest]

FYI:

I am not too sure on how you can go about changing anything to Dura mater

as I personally know that they suppose in cases it is dura but it never

seems to be officially stated. I don't blame Gloria in searching to find

answers and talking about what she wants to with who she wants. I think it

would be a good idea for her to mention this to whomever she sees as she

goes thru her quest for answers. We all know sometimes doctors can get

information alot easier than us, or have knowledge about certain

procedures.

As for Debbie, she is tremendous in her knowledge and references to CJD. I

have gone to her many times before stating something and she has provided

me with references so I can state it. I doubt Debbie would say something

without checking, doublechecking her sources and being able to provide the

proof that is needed.

I also wonder why on a discussion group are we all of a sudden worried

about legal actions on all of our quests for answers. I thought it was a

open forum here. I don't think anyone will do anything that misrepresents

or misinforms in or outside this group. (there is enough of that in the

outside world) I don't think anyone wants to or will do that.

Now this is just my 2 cents :-)

a

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