Re: [Lyme-aid] band 41, last note from me on issue

[Guest guest]

Pam i read all your stuff dont see how you are a pest you know we are all

looking for answers have questions and that is why we are all here we dont

know all and are trying to understand your not bothering anybody your

questions are good i am a newbee too and i just got a copy of my wb and i

did not and do not know anything about the bands

love

cindy in mich

Re: [Lyme-aid] band 41, last note from me on issue

> okay --and this is my last question, I will never bother you guys with

this

> again:

> This is my last note on this issue, I don't want to drive you all nuts.

> Multiple choice:

>

> Presence of a positive band 41 in the absense of any other positive bands

> would:

>

> A. Strengthen the argument for a clinical diagnosis of lyme in the

presence

> of lyme-like symptoms?

> B. Be irrelevant to a clinical diagnosis of lyme in the presence of

> lyme-like symptoms?

>

> A or B

>

> Look, these are old tests and the docs who did the diagnoses are clueless,

> clearly, whatever they did was based on the worst sort of knowledge and

the

> highest degree of ignorance. Since those old tests we have a western blot

> with 5 positive bands --including every single one the CDC says is

positive

> for Lyme. I am simply trying to figure out if the Lyme might have gone

back

> for YEARS more than I have realized. Is band 41 alone a suspicious marker,

> even in the absence of other bands?

>

> I will not belabor this again, and sorry for being so OCD.

>

> Pam

>

>

> At 01:13 PM 5/25/00 EDT, you wrote:

> >pam.......( ok group all in unison now...lol) LYME IS A CLINICAL

> >DIAGNOSES.... the absents of any bands can not disprove a lyme dx......at

> >gettysburg the head of igenex which i consider the ultimate lyme testing

lab

> >stated that " the best test available now only has an accuracy rate of 68

> >persent....we need at teat that is over 98% to make testing the criteria

for

> >dx of lyme " ....and this guy is in the business of making money from

testing

> >.....and he believes in a clinical dx....ANY LLMD WHO DISCOUNTS LYME DUE

TO

> >NEG...BLOD/URINE TESTING....HE IS NOT LL AND U SHOULD FIND ANOTHER

DOC.....

> >Rweid

> >

> >------------------------------------------------------------------------

> >Failed tests, classes skipped, forgotten locker combinations.

> >Remember the good 'ol days

> >1/4053/8/_/484634/_/959274829/

> >------------------------------------------------------------------------

> >

> > is dedicated to Marta McCoy, the foundation behind what

> is today.

> >

> >Easy Reference:

> >Send a blank email message to:

> >

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> > -Unsubscribeegroups - Unsubscribe from the list

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> >Please send messages not related to Lyme disease to

> -Offtopicegroups

> >

> >Archives can be accessed at lyme-aid

> >

> >Please visit the chat room at

chat/lyme-aid

> >

> >

> >

>

> ------------------------------------------------------------------------

> Old school buds here:

> 1/4057/8/_/484634/_/959275844/

> ------------------------------------------------------------------------

>

> is dedicated to Marta McCoy, the foundation behind what

is today.

>

> Easy Reference:

> Send a blank email message to:

>

> -Subscribeegroups - Subscribe to the list through email

> -Unsubscribeegroups - Unsubscribe from the list

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> -Normalegroups - Switch your subscription to normal

>

> Please send messages not related to Lyme disease to

-Offtopicegroups

>

> Archives can be accessed at lyme-aid

>

> Please visit the chat room at

chat/lyme-aid

>

>

>

[Guest guest]

412 band could have been a sign...but who knows much has changed in the last

5 years....when i became sick 11 years ago i was told it was not lyme as i

never saw a tick and did not have a bullseye....we know better now.......why

belabor the point...move on and keep uptodate.....many docs stood by the

steere theory then ...amazingly some still do.....if u meet one run......

Reid

sorry to bwe a bit harsh but i have learned with lyme to look towards

tomorrow and try to forget yesterday.....and to live in the minute....as that

is all i have for now...

Reid

[Guest guest]

Dear Pam,

I know nothing about the western blot, except that it is inconclusive in & of

itself (from our personal experience).

From my perspective, if the doc who ordered the tests does not know that lyme

should be a clinical diagnosis, odd are that he or she will not know how to

treat it correctly, either...

For instance, my daughter's titre was positive; WB negative. I immediately

called the doc when the hospital faxed me the results (having been pretty

well " educated " by our extended lyme family, I was looking for discrepancies

in TRUTH on reporting). Report said: Bands found 0; Reference Range <5.

When I spoke to doc, I asked him: " Since CDC requires 5+ bands (besides lyme

vaccine bands), does this mean that in REALITY up to 4 bands could have shown

up & compliments of CDC, they are allowed to report 0 BANDS SHOWING??? " His

answer was an emphatic " yes. "

(BTW, she was re-tested for lyme, babesia & ehrylichia at CREDIBLE labs - the

same one who showed negative on WB showed negative on all 3 of these others

as well... ANyone want to guess which lab? GRRRR!!!!)

Here are a few websites which might help to clarify some of this testing for

you...

<A HREF= " http://www.igenex.com/ " >IGeneX, Inc.</A>

http://www.igenex.com/

<A

HREF= " http://www.geocities.com/HotSprings/Oasis/6455/western-blot.txt " >western

-blot.txt at www.geocities.com</A>

http://www.geocities.com/HotSprings/Oasis/6455/western-blot.txt

<A

HREF= " http://www.geocities.com/HotSprings/Spa/6772/false-negative.txt " >false-n

egative.txt at www.geocities.com</A>

http://www.geocities.com/HotSprings/Spa/6772/false-negative.txt

Hope this helps!

Blessings,

CHris

[Guest guest]

Reid, I never saw a tick nor did I have a bullseye either. I just woke up

one day with

sore legs to a point where I wasn't sure if I was going to be able to walk,

swollen ankle

areas, my arms would hurt and I was very fatigued. My first blood test came

back positive

and that's when they diagnosed me with Lyme Disease and put me on abx and

then after

8 or 10 weeks, they had me do another blood test and only one band was

positive, I can't

remember which one. I am in the process of getting copies of my tests.

Well anyway, I

was sent to an Infectious Disease doctor who after 10 minutes said that he

didn't think I

had LD. What a crock...

Anne - MD

Re: [Lyme-aid] band 41, last note from me on issue

412 band could have been a sign...but who knows much has changed in the last

5 years....when i became sick 11 years ago i was told it was not lyme as i

never saw a tick and did not have a bullseye....we know better now.......why

belabor the point...move on and keep uptodate.....many docs stood by the

steere theory then ...amazingly some still do.....if u meet one run......

Reid

sorry to bwe a bit harsh but i have learned with lyme to look towards

tomorrow and try to forget yesterday.....and to live in the minute....as

that

is all i have for now...

Reid

_____

<1/3479/8/_/484634/_/959276432/>

<http://adimg./img/3479/8/_/484634/_/959276432/468Att4.gif>

_____

is dedicated to Marta McCoy, the foundation behind what is

today.

Easy Reference:

Send a blank email message to:

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[Guest guest]

Pam,

A positive 41 has to be considered irrelevant. It doesn't support a Lyme diagnosis nor does it support a non-Lyme diagnosis. As has been stated here, the important thing is the SYMPTOMS. Any good lab will consider 41 irrelevant, even the great Igenex, because it is not specific to Bb. Of course irrelevant will be spelled "Negative". What this means is that there is no antibody evidence that Lyme exists at the time the test was done. Other evidence can exist in the form of symptoms.

Lab work is really only important for insurance purposes. Insurance companies do not trust doctors. They fear doctors will incorrectly diagnose patients costing them more money. Because of this, they want "proof" that a disease exists before they pay for treatment. This is a relatively new approach to medicine. (This explanation is a bit sarcastic.)

The other reason lab tests are important is for research studies. Scientific research has to be very specific. And in order to be accepted by peers, it needs to have perimeters. This has made Lyme researchers require that their test subjects be identified as positive through lab work. While these standards for "positive" admittedly will miss MANY Lyme patients, at least most researchers will agree that the ones who are positive are really positive.

I know this is really confusing! The important thing to remember is that Lyme disease needs to be a clinical diagnosis. That means a doctor will read your medical history, listen to your symptoms, and then rely on his 12 years of medical school to make a diagnosis. All lab work has to be considered secondary at best. (My doc hasn't tested me for years. He considers it a waste of time because so far my insurance company isn't screaming, and I'm not enrolling in any research groups.)

Have you considered purchasing a book about Lyme? My two favorites are Coping with Lyme Disease by Lang and

Everything you Need to Know About Lyme Disease and Other Tick-Borne Disorders by Vanderhoof-Forschner. Both books explain this controversy quite well. And 's book gives descriptions for all the bands on the Western Blot.

I hope our explanations have helped you at least a little.

Robynn

Re: [Lyme-aid] band 41, last note from me on issue

okay --and this is my last question, I will never bother you guys with thisagain:This is my last note on this issue, I don't want to drive you all nuts.Multiple choice:Presence of a positive band 41 in the absense of any other positive bandswould:A. Strengthen the argument for a clinical diagnosis of lyme in the presenceof lyme-like symptoms?B. Be irrelevant to a clinical diagnosis of lyme in the presence oflyme-like symptoms?A or BLook, these are old tests and the docs who did the diagnoses are clueless,clearly, whatever they did was based on the worst sort of knowledge and thehighest degree of ignorance. Since those old tests we have a western blotwith 5 positive bands --including every single one the CDC says is positivefor Lyme. I am simply trying to figure out if the Lyme might have gone backfor YEARS more than I have realized. Is band 41 alone a suspicious marker,even in the absence of other bands?I will not belabor this again, and sorry for being so OCD.Pam

[Guest guest]

okay --and this is my last question, I will never bother you guys with this

again:

This is my last note on this issue, I don't want to drive you all nuts.

Multiple choice:

Presence of a positive band 41 in the absense of any other positive bands

would:

A. Strengthen the argument for a clinical diagnosis of lyme in the presence

of lyme-like symptoms?

B. Be irrelevant to a clinical diagnosis of lyme in the presence of

lyme-like symptoms?

A or B

Look, these are old tests and the docs who did the diagnoses are clueless,

clearly, whatever they did was based on the worst sort of knowledge and the

highest degree of ignorance. Since those old tests we have a western blot

with 5 positive bands --including every single one the CDC says is positive

for Lyme. I am simply trying to figure out if the Lyme might have gone back

for YEARS more than I have realized. Is band 41 alone a suspicious marker,

even in the absence of other bands?

I will not belabor this again, and sorry for being so OCD.

Pam

At 01:13 PM 5/25/00 EDT, you wrote:

>pam.......( ok group all in unison now...lol) LYME IS A CLINICAL

>DIAGNOSES.... the absents of any bands can not disprove a lyme dx......at

>gettysburg the head of igenex which i consider the ultimate lyme testing lab

>stated that " the best test available now only has an accuracy rate of 68

>persent....we need at teat that is over 98% to make testing the criteria for

>dx of lyme " ....and this guy is in the business of making money from testing

>.....and he believes in a clinical dx....ANY LLMD WHO DISCOUNTS LYME DUE TO

>NEG...BLOD/URINE TESTING....HE IS NOT LL AND U SHOULD FIND ANOTHER DOC.....

>Rweid

>

>------------------------------------------------------------------------

>Failed tests, classes skipped, forgotten locker combinations.

>Remember the good 'ol days

>1/4053/8/_/484634/_/959274829/

>------------------------------------------------------------------------

>

> is dedicated to Marta McCoy, the foundation behind what

is today.

>

>Easy Reference:

>Send a blank email message to:

>

> -Subscribeegroups - Subscribe to the list through email

> -Unsubscribeegroups - Unsubscribe from the list

> -Digestegroups - Switch your subscription to a digest format

> -Normalegroups - Switch your subscription to normal

>

>Please send messages not related to Lyme disease to

-Offtopicegroups

>

>Archives can be accessed at lyme-aid

>

>Please visit the chat room at chat/lyme-aid

>

>

>

[Guest guest]

In a message dated 5/25/00 1:32:23 PM Eastern Daylight Time, pam@...

writes:

" << A or B? "

BBBBB but so many lymeies start with just a 41 band positive...

" Is band 41 alone a suspicious marker,

even in the absence of other bands? " not really...

" I will not belabor this again, and sorry for being so OCD " . <----lyme

symptom...<grin> .seriously sometimes we all need to hear the same thing 5

different ways to understand it...or even believe it....we all kinda get like

that here...just at different times...B

[Guest guest]

Anne,went to a infections disease said a bunch of crock the only thing good come out of that was i found out i tested postive for rhumotoid arthritis.tested postive postive for LD in 97 after i had it for 2 years.just wanted you too know you was not the only one.feel free to e-mail me anytime....Kathy

at olivia_34_2000@...

" , Anne Marie SBCCOM " wrote:

Reid, I never saw a tick nor did I have a bullseye either. I just woke upone day with sore legs to a point where I wasn't sure if I was going to be able to walk,swollen ankleareas, my arms would hurt and I was very fatigued. My first blood test cameback positiveand that's when they diagnosed me with Lyme Disease and put me on abx andthen after8 or 10 weeks, they had me do another blood test and only one band waspositive, I can'tremember which one. I am in the process of getting copies of my tests.Well anyway, I was sent to an Infectious Disease doctor who after 10 minutes said that hedidn't think Ihad LD. What a crock...Anne - MD-----Original Message-----From: rmcmur3194@... [mailto:rmcmur3194@...]Sent: Thursday, May 25, 2000 1:40 PMlyme-aidegroupsSubject: Re: [Lyme-aid] band 41, last note from me on issue412 band could have been a sign...but who knows much has changed in the last5 years....when i became sick 11 years ago i was told it was not lyme as i never saw a tick and did not have a bullseye....we know better now.......whybelabor the point...move on and keep uptodate.....many docs stood by the steere theory then ...amazingly some still do.....if u meet one run......Reidsorry to bwe a bit harsh but i have learned with lyme to look towards tomorrow and try to forget yesterday.....and to live in the minute....asthat is all i have for now...Reid_____ _____ is dedicated to Marta McCoy, the foundation behind what istoday.Easy Reference:Send a blank email message to: -Subscribeegroups - Subscribe to the list through email -Unsubscribeegroups - Unsubscribe from the list -Digestegroups - Switch your subscription to a digest format -Normalegroups - Switch your subscription to normalPlease send messages not related to Lyme disease to -OfftopicegroupsArchives can be accessed at lyme-aidPlease visit the chat room at chat/lyme-aid------------------------------------------------------------------------Find long lost high school friends:1/4056/8/_/484634/_/959277023/------------------------------------------------------------------------ is dedicated to Marta McCoy, the foundation behind what is today.Easy Reference:Send a blank email message to: -Subscribeegroups - Subscribe to the list through email -Unsubscribeegroups - Unsubscribe from the list -Digestegroups - Switch your subscription to a digest format -Normalegroups - Switch your subscription to normalPlease send messages not related to Lyme disease to -OfftopicegroupsArchives can be accessed at lyme-aidPlease visit the chat room at chat/lyme-aid

[Guest guest]

Pam,

I understand your frustration and concern. Everyone is telling you that Lyme

is a clinical diagnosis which it is but in many states including the one I

live in, the few DR,s that are willing to treat this disease want some kind

of laboratory confirmation. it may be easier in the East but in MI, they want

a back up from a lab. Carol in MI

[Guest guest]

In a message dated 5/25/00 4:12:14 PM Eastern Daylight Time,

Dobelovr1@... writes:

<< Report said: Bands found 0; Reference Range <5.

When I spoke to doc, I asked him: " Since CDC requires 5+ bands (besides lyme

vaccine bands), does this mean that in REALITY up to 4 bands could have

shown

up & compliments of CDC, they are allowed to report 0 BANDS SHOWING??? " His

answer was an emphatic " yes. "

>>

just an idea for ANYONE who goes for a western blot...make sure the lab slip

has a note on it in the comments area...report all bands...I always do that

...I write it in myself...or if a lab person has the slip...ask them to write

it in....

..if I only had 2 bands show up...and they were considered lyme

specific...you'all know I would/could push the issue with a llmd instead of a

regular gp...and probably get treated but if all u get back is 0 bands...it

helps you not at all B