the new IDS guidelines

[Guest guest]

Ok so being the type of person to go straight to the " horse's mouth " I have

just spent over 2 hours reading very carefully the new IDS Lyme guidelines on

their very own site: www.idsociety.org

And now my blood pressure is sky high. Annoyance doesnt begin to cover it. As a

scientist I am SEETHING..From the repetitive mention of EM Rash being one of the

primary diagnostic " proofs " of disease to the total damning of Bartonella, Myco

and other coinfections ( well at least theyre finally admitting that HGA and

Babesia can pose a problem..wow what progress) to the admissions of the authors'

various levels of conflicts of interest to calling themselves oh so many times

the " expert panel " , " panel of experts " etc etc. Not to mention something fishy

about their citations!!!

For Bartonella theyll admit that it IS present in the tiny ticks along with the

Lyme but they say there is " no proof of transmission " ...well how about the many

of us with NO other way we could have gotten it along with our Lyme?? I say we

place ticks containing bartonella on THEM and see if itll transmit!!

Let's see some other highlights: Theyre " vastly " experienced despite admitting

an extremely LOW level of treating serious manifestations quote: " Collectively,

only 1 patient with encephalomyelitis has been diagnosed over the past 5 years

by panel members (G.P.W., J.J.H., R.B.N., R.J.D., A.C.S., E.D.S., M.S.K.,

P.J.K., J.S.B., and L.B.), in spite of both community-based and referral

clinical practices. " they use this to back their statement that late/neuro Lyme

is " quite rare " ...perhaps they havent seen many because after telling these

patients that they cant possibly still have Lyme, they never saw these people

again?

ONE patient in five years by 13 doctors???? C'mon now.Wonder how many severe

neuro Lyme patients Fallon at Columbia sees??? hundreds??? more???

all of their anecdotal evidence of how antibiotics beyond 4 weeks cant possibly

help are OK and valid yet all others' evidence showing symptom improvements with

months of antibiotics are invalid because theyre not in a scientifically

controlled study. double standard

How " post Lyme syndrome " is essentially the same as " chronic Lyme " and the

latter cannot possibly exist because in their opinion no one has " proven "

persistence of infection, AND that without proof of PRIOR EM rash thats

documented by medical staff ( not self reported mind you) or positive blood

tests that you cant possibly even have post lyme syndrome. The stubborn refusal

to separate " chronic Lyme " as in persistence from a possible second " post Lyme

syndrome " which MAY be inflammatory or even autoimmune just means theyre

dismissing it all.

and I loved how they tried to list references from within the LLMD community but

without correctly citing them for what they actually did or did not prove...it

'looks' like their references list is balanced...alas it is BIASED

Also how they dont believe that cystic forms of Borrelia " have clinical

significance " ...convenient bit of denial, now theyll finally admit they

exist...they just dont matter.

and how due to two reference's cited that Borrelia cant possibly be

intracellular despite studies to contrary, after all the SECOND paper ( ref

#336)IS entitled : " Borrelia burgdorferi, an extracellular pathogen, circumvents

osteopontin in inducing an inflammatory cytokine response. "

notice that the study had to do with how the spirochete produces an inflammatory

response and NOT as to whether it even can be found INSIDE cells!!! I checked

the primary source...NO where does it say that Borrelia absolutely cannot go

intracellular.

and GET THIS: the first REF (#335) for proving Borrelia cant be intracellular,

ISNT EVEN THE PAPER THEY SAY...ITS ANOTHER PAPER By Morita et al on

" Effects of late reperfusion on infarct expansion and infarct healing in

conscious rats. " Am J Pathol. 1993 Aug;143(2):419-30 having to do with cardiac

healing!!!! I copy/pasted right from the journal site!

and the one THEY claim to site is simply called 'Chronic Lyme borreliosis in

the laboratory mouse. Am J Pathol 1993; 143:419–20'. btw the same issue and

page number for the journal CANNOT possibly have 2 different articles.hmmm

wonder how many other references are " ghosts " ?????

pub med has the article they want as :Am J Pathol. 1993 Sep;143(3):959-71. PAGES

ARE DIFFERENT

and to quote from abstract:

-These results indicate that immunocompetent mice sustain persistent

infections and develop early acute joint and heart lesions that resolve and then

recur intermittently.-

gee I think this means that peristent infection IS possible???and there is

NOTHING about it being impossible for cystic or even spirochetal forms to be

INTRAcellular!!!!!!

they say objective symptoms are " uncommon " after treatment...which I take to

mean NOT impossible so what of those patients??? Obviously the ones who DO have

continuing objective symptoms are the ones seeking care from LLMDs as theyre

still ill and therefore it seems as if the LLMDs see a lot higher percentages of

these...after all why would the " more common " Lyme outcome of feeling better

after 3-4 weeks meds go to a LLMD??? hmmm seems like their verbage is

" subjective " no??

Also what about those among us (myself included) who never presented with that

darn rash OR even positive bloods...for me both occurred about 2-3 years into

on/off treatment!! and without another tick bite. It seems as if that is their

MAIN criteria for " proving " having had/or having Lyme in the first place.

they also claim that it is common in U.S. populations for fatigue and cognitive

problems and with feeling ill on some days as a consequence of aging...the old

" everyone feels ill or tired or cant think every now and then " hypothesis. well

then is it also common among teens and younger kids too?? I think not yet we

have many of those ages with persistent symptoms!! It just annoys me that they

can so easily dismiss it when a previously well and intelligent 14 or 16 yr old

can no longer add numbers as " happens to everyone " ...

SO...anyone else brave enough to read that absolutely insane piece of bird cage

liner?? Id love to share some thoughts and after my BP comes down maybe a

chuckle or 2 at the ignorance, arrogance and sheer audacity...and the fear too

because too many others will listen to this...from the Academy of Pediatrics to

CDC to Insurance policy...sigh

Maybe its time some of us get a CLASS ACTION SUIT against the group of

them???????If big tobacco can fall so can these clowns...what do you think??

Be well

Finette

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[Guest guest]

Finette,

I agree.

The IDSA has refused to listen to reason. In fact, they have closed the door

to any reasonable and scientific discussion.

Therefore, substantive actions need to be carried on in other arenas, the

moral, ethical, and legal realms.

Unfortunately, many in the US today, and this includes the IDSA, do not wish

to be accountable for their decisions. Unless and until penalties are

imposed for the preventable consequences of their lack of action and poor

judgement, many more will suffer.

Doctors still speak about and reference the Hippocratic Oath. The oath

begins, " Primum non nocere, " " First do no harm " . Definite harm has come to

many from people who hold themselves out to be physicians and accept payment

for their medical advice. The IDSA guidelines, past and present, have harmed

many and for this they must account.

Steve

From: FinRussak@...

Reply-

Subject: [ ] the new IDS guidelines

Date: Sat, 07 Oct 2006 02:11:47 -0400

Ok so being the type of person to go straight to the " horse's mouth " I

have just spent over 2 hours reading very carefully the new IDS Lyme

guidelines on their very own site: www.idsociety.org

And now my blood pressure is sky high. Annoyance doesnt begin to cover it.

As a scientist I am SEETHING..From the repetitive mention of EM Rash being

one of the primary diagnostic " proofs " of disease to the total damning of

Bartonella, Myco and other coinfections ( well at least theyre finally

admitting that HGA and Babesia can pose a problem..wow what progress) to the

admissions of the authors' various levels of conflicts of interest to

calling themselves oh so many times the " expert panel " , " panel of experts "

etc etc. Not to mention something fishy about their citations!!!

For Bartonella theyll admit that it IS present in the tiny ticks along with

the Lyme but they say there is " no proof of transmission " ...well how about

the many of us with NO other way we could have gotten it along with our

Lyme?? I say we place ticks containing bartonella on THEM and see if itll

transmit!!

Let's see some other highlights: Theyre " vastly " experienced despite

admitting an extremely LOW level of treating serious manifestations

quote: " Collectively, only 1 patient with encephalomyelitis has been

diagnosed over the past 5 years by panel members (G.P.W., J.J.H., R.B.N.,

R.J.D., A.C.S., E.D.S., M.S.K., P.J.K., J.S.B., and L.B.), in spite of both

community-based and referral clinical practices. " they use this to back

their statement that late/neuro Lyme is " quite rare " ...perhaps they havent

seen many because after telling these patients that they cant possibly still

have Lyme, they never saw these people again?

ONE patient in five years by 13 doctors???? C'mon now.Wonder how many severe

neuro Lyme patients Fallon at Columbia sees??? hundreds??? more???

all of their anecdotal evidence of how antibiotics beyond 4 weeks cant

possibly help are OK and valid yet all others' evidence showing symptom

improvements with months of antibiotics are invalid because theyre not in a

scientifically controlled study. double standard

How " post Lyme syndrome " is essentially the same as " chronic Lyme " and the

latter cannot possibly exist because in their opinion no one has " proven "

persistence of infection, AND that without proof of PRIOR EM rash thats

documented by medical staff ( not self reported mind you) or positive blood

tests that you cant possibly even have post lyme syndrome. The stubborn

refusal to separate " chronic Lyme " as in persistence from a possible second

" post Lyme syndrome " which MAY be inflammatory or even autoimmune just means

theyre dismissing it all.

and I loved how they tried to list references from within the LLMD community

but without correctly citing them for what they actually did or did not

prove...it 'looks' like their references list is balanced...alas it is

BIASED

Also how they dont believe that cystic forms of Borrelia " have clinical

significance " ...convenient bit of denial, now theyll finally admit they

exist...they just dont matter.

and how due to two reference's cited that Borrelia cant possibly be

intracellular despite studies to contrary, after all the SECOND paper ( ref

#336)IS entitled : " Borrelia burgdorferi, an extracellular pathogen,

circumvents osteopontin in inducing an inflammatory cytokine response. "

notice that the study had to do with how the spirochete produces an

inflammatory response and NOT as to whether it even can be found INSIDE

cells!!! I checked the primary source...NO where does it say that Borrelia

absolutely cannot go intracellular.

and GET THIS: the first REF (#335) for proving Borrelia cant be

intracellular, ISNT EVEN THE PAPER THEY SAY...ITS ANOTHER PAPER By Morita et

al on

" Effects of late reperfusion on infarct expansion and infarct healing in

conscious rats. " Am J Pathol. 1993 Aug;143(2):419-30 having to do with

cardiac healing!!!! I copy/pasted right from the journal site!

and the one THEY claim to site is simply called 'Chronic Lyme borreliosis

in the laboratory mouse. Am J Pathol 1993; 143:419–20'. btw the same

issue and page number for the journal CANNOT possibly have 2 different

articles.hmmm wonder how many other references are " ghosts " ?????

pub med has the article they want as :Am J Pathol. 1993 Sep;143(3):959-71.

PAGES ARE DIFFERENT

and to quote from abstract:

-These results indicate that immunocompetent mice sustain persistent

infections and develop early acute joint and heart lesions that resolve and

then recur intermittently.-

gee I think this means that peristent infection IS possible???and there is

NOTHING about it being impossible for cystic or even spirochetal forms to be

INTRAcellular!!!!!!

they say objective symptoms are " uncommon " after treatment...which I take to

mean NOT impossible so what of those patients??? Obviously the ones who DO

have continuing objective symptoms are the ones seeking care from LLMDs as

theyre still ill and therefore it seems as if the LLMDs see a lot higher

percentages of these...after all why would the " more common " Lyme outcome of

feeling better after 3-4 weeks meds go to a LLMD??? hmmm seems like their

verbage is " subjective " no??

Also what about those among us (myself included) who never presented with

that darn rash OR even positive bloods...for me both occurred about 2-3

years into on/off treatment!! and without another tick bite. It seems as if

that is their MAIN criteria for " proving " having had/or having Lyme in the

first place.

they also claim that it is common in U.S. populations for fatigue and

cognitive problems and with feeling ill on some days as a consequence of

aging...the old " everyone feels ill or tired or cant think every now and

then " hypothesis. well then is it also common among teens and younger kids

too?? I think not yet we have many of those ages with persistent symptoms!!

It just annoys me that they can so easily dismiss it when a previously well

and intelligent 14 or 16 yr old can no longer add numbers as " happens to

everyone " ...

SO...anyone else brave enough to read that absolutely insane piece of bird

cage liner?? Id love to share some thoughts and after my BP comes down maybe

a chuckle or 2 at the ignorance, arrogance and sheer audacity...and the fear

too because too many others will listen to this...from the Academy of

Pediatrics to CDC to Insurance policy...sigh

Maybe its time some of us get a CLASS ACTION SUIT against the group of

them???????If big tobacco can fall so can these clowns...what do you think??

Be well

Finette

________________________________________________________________________

Check out the new AOL. Most comprehensive set of free safety and security

tools, free access to millions of high-quality videos from across the web,

free AOL Mail and more.