New York Times Dan Hurley ANTI-IGENEX Article OUT!!!!!
CaliforniaLyme
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By DAN HURLEY and MARC SANTORA
Published: August 23, 2005
Steve Courcier just wanted to know: did he have Lyme disease or didn't
he?
Doctors who tested Mr. Courcier in March at the Mayo Clinic in
Scottsdale, Ariz., ruled out Lyme, a tick-borne illness, as an
explanation for the disabling pain and exhaustion he was suffering.
Then a Texas doctor sent his blood sample to a California laboratory
that indicated he did have Lyme disease. But a New York specialist who
tested his blood a third time, in June, said emphatically that he did
not.
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Allison V. Smith for The New York Times
After several rounds of testing, Steve Courcier, a 38-year-old
executive from Dallas, was told both that he had Lyme disease and that
he didn't. A regimen of antibiotics, he said, was only making him feel
worse.
"It's amazing to me that you could have this much disparity in medical
test results and not have the government do something," said Mr.
Courcier, 38-year-old executive with a consulting firm who lives with
his wife and two young children in a Dallas suburb.
Now the New York State Department of Health has opened an investigation
of the California laboratory, IGeneX Inc., that issued Mr. Courcier's
positive result, after receiving eight complaints from doctors and
patients who said its Lyme tests also gave them positive results not
confirmed by other labs' results.
Concern about Lyme testing goes beyond New York State. This year the
Food and Drug Administration and the Centers for Disease Control and
Prevention released a warning about Lyme tests "whose accuracy and
clinical usefulness have not been adequately established."
The warning did not mention IGeneX or any other lab by name. But Dr.
Paul Mead, a C.D.C. scientist who helped write it, said in a telephone
interview, "Quite simply, we're concerned that patients are being
misdiagnosed through the use of inaccurate laboratory tests." He added
that some of the tests and techniques used by IGeneX were among those
the agencies were concerned about.
Nick Harris, the founder and chief executive of IGeneX, defended his
company's testing, saying that the federal guidelines miss many
patients who have Lyme disease.
Guidelines from the disease control agency recommend Lyme testing only
when patients have symptoms and live in an area of the United States
where ticks are known to be infected with Borrelia burgdorferi, the
organism that causes the disease. Under the guidelines, laboratories
should first conduct a test called Elisa. But the Elisa test often
gives a false positive result, so the agency also calls for a second,
more sensitive test, the Western blot.
The recent warning by the two federal agencies named some tests they
said had not proved useful or accurate. They noted, for instance, that
some laboratories performed a test called polymerase chain reaction "on
inappropriate specimens such as blood and urine." IGeneX offers such
tests on both blood and urine. The alert also warned against methods of
interpreting Western blots "that have not been validated and published
in peer-reviewed scientific literature."
Nationally, reported cases of Lyme disease have more than doubled in a
decade, to at least 23,963 in 2003 (the most recent year for which
statistics are available) from fewer than 9,000 in 1993. Infectious
disease experts agree that infections have been on the rise, but they
worry that part the increase may be due to overdiagnosis.
A misdiagnosis can have serious consequences. In some cases, Dr. Mead
said, Lou Gehrig's disease was misdiagnosed as Lyme by unproved tests.
The patients in those cases, he said, wasted thousands of dollars on
ineffective treatment. The antibiotics used to treat Lyme disease can
also cause complications, including severe allergic reactions.
Some doctors and patients, however, have a different concern. They
believe Lyme is often missed by the traditional tests recommended in
C.D.C. guidelines.
Dr. Harris, of IGeneX, estimated that his laboratory tested 50,000 to
75,000 patients each year. (Prices go up to $390 for a battery of tests
it recommends.) "These are patients who have been bounced around," he
said. "A lot of them were undertreated at some time, and their disease
came back."
Still, he went on, IGeneX runs the traditional tests accurately and
gives doctors guidelines for interpreting them both by the C.D.C.'s
conservative standard and by IGeneX's more liberal standard - even
though he asserted that the conservative standard would miss many cases
of chronic Lyme infection.
Unproved Lyme Disease Tests Prompt Warnings
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He provided a reporter with a document showing that in each year since
2000, IGeneX had achieved scores of at least 97 percent accuracy on the
Western blot and Elisa tests, well above the minimum 80 percent
required by the state.
But Robert Kenny, a spokesman for the State Department of Health, said
the agency was not convinced that IGeneX was performing the recommended
tests for the public in the same manner as it has been performing them
to pass the state's proficiency review.
Moreover, Mr. Kenny said IGeneX had not supplied requested proof that
its urine antigen test can be used to accurately diagnose Lyme disease.
Dr. Harris says IGeneX has been working for more than two years to
supply New York State with the proof it wants. "It's been an
exceedingly long process that's nearing completion," he said. Dr. Mead
at the C.D.C. also confirmed that another laboratory, Bowen Research
and Training Institute Inc. of Tarpon Springs, Fla., went beyond the
agency's recommended tests.
The State of Florida denied its application last year for a license to
perform tests meant to diagnose Lyme, but its founder and president,
Dr. JoAnne Whitaker, asserts that the tests it continues to perform are
for research purposes only.
Some patients insist that IGeneX's tests have been instrumental in
detecting the Lyme disease that other laboratories missed. One such
patient is Ronald Hamlen, 64, a plant biologist from Maryland who
worked at DuPont for 22 years before retiring recently. Tests run by
IGeneX, he said, detected Lyme disease that was missed by other
laboratories.
"If I had not had the positive result at IGeneX, I seriously question
whether I would have been alive at this point," he said in a telephone
interview. Before getting tested by IGeneX and going on intravenous
antibiotics for 10 weeks, he said, "all I could do at that point was
lie on the couch."
In contrast, Mr. Courcier's odyssey into the Lyme testing labyrinth
began last year on the Sunday after Thanksgiving, when a severe pain in
his leg led him to seek care at a walk-in clinic. Preliminary diagnoses
of phlebitis and muscle strain proved inaccurate, and as the pain
increased and spread, he finally went to the Mayo Clinic.
Doctors there told him that an initial test for Lyme disease came back
negative, but they could offer no other clear diagnosis for what was
ailing him.
Back home in Texas, Mr. Courcier was referred to a neurologist
specializing in Lyme disease. The neurologist sent samples of his blood
to IGeneX, as well as to Quest Diagnostics, one of the country's
largest medical testing companies. Each lab followed the two-step
process recommended by the C.D.C.
IGeneX and Quest Diagnostics performed the Elisa and the Western blot
tests on Mr. Courcier's samples. The Elisa came back positive from both
labs, suggesting that Mr. Courcier might have antibodies to B.
burgdorferi.
On the Western blot tests, however, IGeneX sent back positive results,
while the Quest testing came back negative.
Although his doctor started him on antibiotics to treat the possible
infection, Mr. Courcier was encouraged by a colleague to visit Dr. Gary
Wormser, chief of the division of infectious diseases at New York
Medical College in Valhalla, for another opinion. Dr. Wormser repeated
the Western blot test and told him in June that he did not have Lyme
disease.
At first, Mr. Courcier did not know whom to trust, and he remained on
the antibiotics therapy prescribed by his doctor in Texas. But by July
he concluded that he did not have Lyme disease and stopped taking the
antibiotics, which he said were only making him feel worse.
"It's been a hell of an emotional roller coaster," said Mr. Courcier,
who conceded that it was a comfort for a while to have a definite
explanation for the pain and exhaustion that continue to plague him.
Dr. Mead of the C.D.C. said he sympathized with Mr. Courcier's plight.
But for now, he said, patients and physicians should rely on the
recommended two-step process. The tests, he said, are accurate in more
than 90 percent of cases of long-term Lyme infection.
But he added that he was still troubled by the dispute. "We don't want
to be absolutely dogmatic that it's our way or the highway," he said.
"At the same time, it's clear there are tests out there for which there
is really precious little to support their accuracy."
CaliforniaLyme
Kw...@hotmail.com
> I thought he was pretty darn fair considering the circumstances!!
All the letters from patients helped a lot!!
ireallywant2believe
CaliforniaLyme wrote:
> I thought he was pretty darn fair considering the circumstances!!
What circumstances?
Did anyone notice the part about testing 50-75,000 Lyme patients a year
at $390 a pop?
That is $20 M- $30 M a year!
No wonder Nick can afford to sponsor seminars etc
So why not fund LymeNUT and CALDA so they could put their damned
Lymetimes on line for FREE?
Greatcod
And
"Although his doctor started him on antibiotics to treat the possible
infection, Mr. Courcier was encouraged by a colleague to visit Dr. Gary
Wormser, chief of the division of infectious diseases at New York
Medical College in Valhalla, for another opinion. Dr. Wormser repeated
the Western blot test and told him in June that he did not have Lyme
disease."
Is it not the case that the prior antibiotic treatment would make
Wormser's testing
pointless??
Chuck P Adams
Chuck always wins!
ireallywant2believe
The MISGUIDED (though well intentioned) effort to "kill the story" was
offensive beyond comprehension.
The very same week that Judith Miller went to jail to defend
journalistic principles, these folks felt it was appropriate to write
to the New York Times and instruct them to kill a story they assumed
they knew the editorial content of and to try to engage in prior
restraint!
And their letters were absurd--using the self fulfilling prophecy
standard ("I'm SURE I have Lyme so the lab that gives me a positive
result MUST be good").
I tried to say that ALL Lyme testing is bad and unreliable and none of
us really know or have any way of knowing if Igenex is any good or not.
In fact, I think we ought to be arguing CLINICAL DIAGNOSIS all day long
NOT in defense of tests and labs that we have no way of defending
(anyone remember the Gensys fiasco?).
Because once we concede that a positive test is needed, we've lost the
battle because they can refute the tests and the labs. And then they
can insist on positives before treating.
But if we argue CLINICAL DIAGNOSIS and that insurance companies (and
medical boards) are WRONG to insist on testing or rely on it for
insurance denials or as any basis for prosecution, well we can say that
the testing is KNOWN unreliable and insisting on positive testing is
inappropriate, see FDA WARNING
And I personally am not comfortable defending a lab because I'm NOT a
microbiologist nor has IGenex (or Mdlabs) EVER showed us their
validation studies much less gotten anything about their tests
published in peer review.
And then there's the Bowen labs aka Gensys 2.
I USED to have some faith in Nick Harris and Igenex but the whole dog
ate my homework story with the LUAT test just makes me wonder and I no
longer have any faith--and with all of these tests it comes down to
FAITH not science and testing is SCIENCE NOT RELIGION so faith is
misplaced.
When Klempner wrote the article savaging the LUAT and Nick CLAIMED he
sabotaged the tests, WHY didn't Nick respond in writing in the journal
that article was published in? WHY didn't he go to the Office of
Reserch Integrity at the NIH and DEMAND an investigation--not only
would it have helped him BUT IF HE PROVED KLEMPNER TO BE A FRAUD or
academically dishonest IT WOULD HAVE BEEN ALL WE NEEDED TO DISCREDIT
THAT CHRONIC LYME STUDY!
And the "we ran out of the magic reagent" story, well, sure. But then
HOW did Nick challenge Klempner to redo the testing IF HE HAD NO MORE
REAGENT?
And how was it that SUDDENLY the reagent HAPPENED TO RUN OUT AT THAT
TIME and the LUAT was pulled BUT MAGICALLY now we have the Lyme dot
blot assay which NO ONE has ever explained how that isn't the LUAT with
another name!
Nope I don't have FAITH in testing at all. And when it comes to science
SHOW ME THE DATA and Bowen, Igenex, Mdlabs have never ever done so.
http://www.fda.gov/cdrh/lyme.html
FDA Medical Bulletin * Summer 1999 *
Lyme Disease Test Kits: Potential for Misdiagnosis
By S. Lori Brown, Ph.D., M.P.H., Sharon L. Hansen, Ph.D., John J.
Langone, Ph.D., Nancy Lowe, M.A., and Nancy Pressly, B.S. Engr., Center
for Devices and Radiological Health
The Food and Drug Administration (FDA) is concerned about the potential
for misdiagnosis of Lyme disease based on the results of commonly
marketed tests for detecting antibodies to Borrelia burgdorferi, the
organism that causes Lyme disease. It is important that clinicians
understand that a positive test result does not necessarily indicate
current infection with B. burgdorferi, and a patient with active Lyme
disease may have a negative test result. (1-5)
The tests should be used only to support a clinical diagnosis of Lyme
disease and should never be the primary basis for making diagnostic or
treatment decisions. Diagnosis should be based on a patient history,
which includes symptoms and exposure to the tick vector and physical
findings. The most definitive diagnostic procedure is biopsy and
isolation of B. burgdorferi in culture.
Assays for anti-Borrelia burgdorferi (anti-Bb) can provide evidence of
previous or current infection, but to improve reliability FDA supports
the Centers for Disease Control and Prevention (CDC) recommendation for
two-step testing and interpretation of results (1).
The first step is to perform an assay that detects either total or
class-specific antibodies (IgM or IgG) by using enzyme-linked
immunosorbent technology ("ELISA" or "EIA") or indirect
immunofluorescence microscopy ("IFA"). IgM levels usually peak 3 to 6
weeks after infection. IgG antibodies begin to be detectable several
weeks after infection and may continue to develop for several months
and generally persist for years.
A negative result indicates only that there was no serologic evidence
of infection with B. burgdorferi. It should not be used as the basis
for excluding B. burgdorferi as the cause of illness, especially if the
blood was collected within 2 weeks of when symptoms began. A positive
or equivocal result is presumptive evidence of the presence of anti-Bb.
It should always be followed by second-step testing and should not be
reported until the second step testing is completed.
The second step is to perform a Western-blot (immunoblot) assay, a more
specific assay than that used for the first step
A negative result indicates that no reliable serologic evidence of B.
burgdorferi infection was present. A negative result should not be used
as the sole basis for excluding B. burgdorferi as the cause of illness.
If Lyme disease is suspected, a second specimen collected 2 to 4 weeks
after the first specimen should be tested. If retesting, do the first
step and if the result is positive or equivocal, do the second step. A
positive result provides serologic evidence of past or current
infection with B. burgdorferi. Because the presence of even specific
antibodies to B. burgdorferi does not always indicate current
infection, a positive result can support, but not establish, a clinical
diagnosis of Lyme disease. Even using the two-step approach, the
sensitivity and specificity of the combined test results are
inadequate. Because assays for anti-Bb should be used only for
supporting a clinical diagnosis of Lyme disease and not for "screening"
asymptomatic individuals, the result of the first-step assay is best
described as "initial" rather than "screening." Likewise, the
second-step Western-blot assay is best described as "supplemental"
rather than "confirmatory", because of the low specificity for
detecting IgM anti-Bb. Thus, a positive IgM anti-Bb result alone is not
adequate for supporting a diagnosis of Lyme disease in persons with
illness of greater than one-month duration.
Several factors contribute to the limitations of using ELISA, IFA, or
Western blot tests for supporting a diagnosis of Lyme disease. The
stage of disease in which the specimen was taken is critical. Many
patients with active or recent infections do not have detectable
anti-Bb in a single specimen. This happens because such antibodies
often develop after manifestations of early infection or because
detectable anti-Bb may diminish or never develop in patients treated
with antibiotics. Further, a positive test result can be true evidence
of previous infection with B. burgdorferi and unrelated to a current
illness. Assays for anti-Bb may yield false-positive results, because
antibodies to B. burgdorferiantigens may cross react with antigens
associated with autoimmune diseases or from infection with other
spirochetes, rickettsia, ehrlichia, or other bacteria such as
Helicobacter pylori. (6,7)
In summary, serologic testing is not useful early in the course of Lyme
disease, because of the low sensitivity of tests in early disease.
Serologic testing may be more useful in later disease at which time
sensitivity and specificity of the test is improved.
References
Center for Disease Control and Prevention. Recommendations for test
performance and interpretation from the second national conference on
serologic diagnosis of Lyme Disease. MMWR 1995; 44:590-591. Association
of State and Territorial Public Health Laboratory Directors and the
Centers for Disease Control and Prevention. Recommendations. In:
Proceedings of the Second National Conference on Serologic Diagnosis of
Lyme Disease (Dearborn, Michigan). Washington, DC: Association of State
and Territorial Public Health Laboratory Directors 1995; 1-5. Craven
RB, Quan TJ, Bailey RE, Dattwyler RJ, Ryan RW, Sigal LH, Steere AC,
Sullivan B, Johnson BJB, Dennis DT, Gubler DJ. Improved serodiagnostic
testing for Lyme disease; results of a multi center serologic
evaluation. Emerging Infect Dis 1996; 136-140. Bakken LL, Callister SM,
Wand PJ, Schell RF. Interlaboratory comparison of test results for
detection of Lyme disease by 516 participants in the Wisconsin State
Laboratory of Hygiene/College of American Pathologists proficiency
testing program. J Clin Microbiol 1997; 35:537-543. Johnson RC, Johnson
BJB. Lyme disease: serodiagnosis of Borrelia burgdorferi sensu lato
infection. In: Rose NR, Macario EC, Fahey JL, Freidman H, Penn GM, eds.
Manual of Clinical Laboratory Immunology, 5th ed. Washington, DC:
American Society for Microbiology, 1997: 526-533. Magnarelli LA, Miller
JN, Anderson JF, Riviere GR. Cross-reactivity of nonspecific treponemal
antibody in serologic tests for Lyme disease. J Clin Microbiol
1990;28:1276-1279. Schwan TG, Burgdorfer W, Rosa PA. Borrelia. In:
Murray PR, Baron EJ, Pfaller MA, Tenover FC, Yolken RH, eds. Manual of
Clinical Microbiology, 6th ed. Washington, DC: American Society for
Microbiology, 1995:626-635.
Chuck P Adams
to come, mark my words. Just like on Lymenut when I told them the NYT
is still going to come out with the article as they played victory
music and drinking the magic Kool Aid.
also that 30mill figure is wrong... add a few more million to that.
ireallywant2believe
IF that figure is right or even close to right, well IGENEX is RAKING
IN THE CASH $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
Seriously that would mean a QUARTER OF A BILLION DOLLARS in the last
ten years!
So much for Nick Harris the Lyme people's friend! With no agenda or axe
to grind? Just those sorts of figures alone cast his crediblity into
doubt.
I've heard him claim that Igenex is unique because they pour all their
revenues and profits back into developing new testing, Well even if the
figures are HALF of these amounts, that is pretty hard to believe.
For those amounts Nick ought to be able to develop a test that really
can count the number of angels on the head of a pin!
Seriously, I used to have some faith in that guy and that lab but after
the LUAT fiasco and this, well .....
THEHICKWITHLYME
was,,,,,funny how they dont give any suggestions either,,,,,they just want
you to take the cheap psychiatric medicines...This is another big bash to
getting diagnosed with lyme disease....Now people will get als diagnosis
like i did 11 years ago,,,only they will die because im sure this gives our
low life government a step above lyme disease...Wormsler wont stop till he
kills a bunch of people...im certain some do not have lyme,,,but alot
do,,,and quest shouldnt be allowed to do testing,,,they flat out
suck...whether it be igenex,etc..i feel the cdc,,NOW believes testing is
90%...we know that is far from being true,,due to haveing the tick bite
etc...i went from 190lbs,,,to 140..my stonybrook test came back postive same
as the igenex,,,,7 quest labs came back negative..once recieving iv
antibiotics,,my spinal protein dropped from 118 to 54 in 2 months...and my
als diagnosis was lifted....thats all the clinical trials needed....390.00
to save my life was much cheaper then being hospitalized every few
weeks..mr. harris is really going to have to show some proof,,,and we as
lyme victims really need to stand up for ourselves,,this is the first step
for wormsler,,,now he will be getting lyme treatments stopped,,,even on
patients who actually need them...he is already trying to stop treatment in
Pennsylvania,,,what the hell kind of fool is he i got bit out east..how do
you make treatment areas,when ticks and migratory birds cant read stop signs
or state boundries..WORMSLER,,,HOW STUPID ARE YOU??,,Just my opinion,i pray
you die a slow horrific death in a shitty nurseing home for all the people
you are going to hurt..
CaliforniaLyme <Califor...@cs.com> wrote in message
news:1124756582.6...@f14g2000cwb.googlegroups.com...
CaliforniaLyme
does imply that Igenex is doing something wrong and that is not fair
considering they are following the guidelines!!! Still, I was
expecting much worse-
Chuck P Adams
back in 1997, a false diagnosis and over $500 in bogus tests that I
never needed. This guy in the article is one of THOUSANDS who are going
thru this, you have the Lymenut disinformation team trolling in MS and
ALS groups trying to kill people to get them to see there LLMD's and
bogus labs.
I question why the stink is coming from Lymenut and a certain group.
How far does those Millions go?
Chuck P Adams
lol
THEHICKWITHLYME
find lyme are shut down,,,there will be like 8 lyme cases a year,,maybe less
using quest,lol...this isnt going to stop here.Treatments will be
stopping,,all some lyme patient has to due is take this article and run to a
lawyer,and lyme patients wont find treatment anywhere.This is a big blow to
lyme disease suffers,,,You will see...I only hope im wrong.Like i stated the
infectious disease society is already trying to stop treatment in PA.What
state is next.
CaliforniaLyme <Califor...@cs.com> wrote in message
news:1124761982.5...@z14g2000cwz.googlegroups.com...
ireallywant2believe
THEHICKWITHLYME wrote:
> im glad you are taking this better than myself,,,if the 2 labs,,that can
> find lyme are shut down,,,there will be like 8 lyme cases a year,,maybe less
> using quest,lol
Not surprisingly you totally miss the point.
How do YOU or anyone else know that these labs are "finding Lyme"?
If you start from the premise that Lyme testing totally and completely
sucks why is it that they are doing the testing better?
And the answer for most Lyme patients comes down to: these labs are
giving us results that purport to be positive, confirming what we
already believe to be true, taht we have Lyme.
BUT that is NOT a scientific standard. That is the self fulfilling
prophecy standard.
No Lyme patients is able to say "Well based on the consensus opinion of
microbiologists, the lab techniques are better" or "the tests have
something unique about them" or something substantive.
Hick the TRUTH is that neither YOU nor I nor any other Lyme patient
around has visited those labs, along with microbiologists or others
with sufficient expertise to say that these labs are doing it right. We
just don't know.
The TRUTH about the Gensys lab--another lab BELOVED by Lyme patients
and llmds--was a TOTAL SCAM. Not only was the "lab director" a fraud
and convicted felon/con man, but the "lab" did NOT even have the
equipment that would have enabled them to be doing what they were
doing!
WHY did no one in Lymeland apparently bother to ask themselves "Why is
it that Gensys could do cultures and sensitivity testing when NO OTHER
LAB IN THE WORLD EVEN CLAIMED TO BE ABLE TO DO IT?
Nope. Instead the self fulfilling prophecy standard was applied and
Gensys was "great."
Yeah, sure, a GREAT BIG SCAM!
So have you ever asked yourself, how can Mdlabs be doing a "spirochetal
load" test? What do the results MEAN? What is a western blot for
babesia? Where's some validation studies showing the meaning of various
bands on a babesia WB? Why did Lyme patients LOVE that lab when it was
producing LOTS of positives but suddenly didn't LOVE the lab as much
when the lab "tightened up their standards" and suddenly there weren't
as many positives? Did they go from being a "good lab" to a "bad lab"
their tests from "good tests" to "bad tests"?
Yeah--applying the self fulfilling prophecy standard, the tell me what
I WANT to hear standard.
What is it that DOESN'T make you WONDER when a lab CHARGES a "donation
to research" FEE?
Aren't DONATIONS defined as something VOLUNTARY? And if the lab does
NOT receive the "DONATION" do they perform the test? (NO) So if not
then how is it a "donation" rather than a FEE? And if they're not
allowed to charge a fee, but do so by the simple ruse of calling it a
"donation" doesn't that make you wonder about the rest of what's going
on there?
Bowen labs. Does that. AND Mattman who helped develop the bowen test
says Lyme can be spread on pens and doorknobs. Which is SCIENTIFICALLY
and MEDICALLY IMPOSSIBLE!
Dr Phillips helped develop the test. BUT he distanced himself. WHY?
Well for one reason whittaker and mattman refused to do PCR testing to
confirm the results. For another, they started doing the "donation"
charging thing. But also because he had real concerns about the
validity of the test. Again--why could they do something no one else
could do? When looking at the Bowen Institute and you see the "Bowen
healing method" doesn't it make you wonder? Doesn't it make you wonder
when Mattman says EVERY Sample she's ever seen has Lyme?
(Hick these questions using the word "you" aren't intended for YOU--I
KNOW that YOU are NOT a reasonable person so please realize that when I
say YOU I mean "the reasonable person"--reasonable people do NOT snort
silver.)
>...this isnt going to stop here.Treatments will be
> stopping,,all some lyme patient has to due is take this article and run to a
> lawyer,and lyme patients wont find treatment anywhere.
What is a lawyer going to do about it? What is some patient asking a
lawyer to do about it?
>This is a big blow to
> lyme disease suffers,,,
One of many in the hit parade.
So is the glut of silver profiteers and silver cult freaks.
>You will see...I only hope im wrong.
Well you FREQUENTLY are wrong. Pretty much never are you right.
>Like i stated the
> infectious disease society is already trying to stop treatment in PA.What
> state is next.
You're an idiot.
ireallywant2believe
then celebrated (prematurely) their success:
dali
It's called a herx, it gets worse before it gets better. looks like the
poor bastard was sold a bill of goods.
>...definite explanation for the pain and exhaustion that continue to plague him.
I'd like to hear his dx. fibro? CFS? what a joke and yes a balanced
article would have stated bty, even if you test positive, Lyme is a
disease that good docs treat by clinical presentation.
HMO/chuckie scoreboard.
THEHICKWITHLYME
blots were drawn at a local hospital and sent the same day...it was for a
western blot...both came back with the exact same bands....I lost 3
years,and was near crippled,,because for those 3 years they used
quest,nichols etc..my condition only worstened.Im saying,YES,i dont think
anyone has a test.BUT someone needs one because Wormsler,swears all us
people who have had tick bites,bullseye rashes,right before we became ill
dont have lyme.WELL,i would like him to tell us what it is.
ireallywant2believe <ireallywa...@yahoo.com> wrote in message
news:1124802115.0...@f14g2000cwb.googlegroups.com...
ireallywant2believe
THEHICKWITHLYME wrote:
> well i agree,,,maybe its all scam..
Yes maybe it is.
Maybe it isn't.
The point being that NONE of us ABSOLUTELY NONE OF US has ANY WAY of
knowing.
But there sure are some warning signs. And red flags. Things to be
honestly concerned about.
>BUT my Stoneybrook,,and Igenex western
> blots were drawn at a local hospital and sent the same day...it was for a
> western blot...both came back with the exact same bands....I lost 3
> years,and was near crippled,,because for those 3 years they used
> quest,nichols etc..my condition only worstened.Im saying,YES,i dont think
> anyone has a test.BUT someone needs one because Wormsler,swears all us
> people who have had tick bites,bullseye rashes,right before we became ill
> dont have lyme.WELL,i would like him to tell us what it is.
That might be the most rational thing you've EVER written!
Yes it would be nice to DEMAND a good valid test. But it doesn't work
that way. Nature reveals her secrets in her own times. You can't just
demand that testing be good. That is like DEMANDING that someone invent
time travel.
Which is why it is a HUGE mistake for Lyme patients to rely on testing
that they don't know and can't establish the validity of RATHER than
insisting that a clinical diagnosis is a clinical diagnosis and that
OUR clinicians are just as able and competent to make one as anyone
else. Let the insurance companies DISPROVE that we have Lyme rather
than accepting the burden of proving it. We "prove" it not by positive
tests but by our doctors opinions. And our doctors opinions are just as
good as anyone elses. Who says that one opinion outweighs another? If
my Dr says I have Lyme I wouldn't even go see their doctor--I would sue
them if they denied treatment and say that they have NO BASIS for
saying I don't have Lyme or contradicting my doctor!
(it is more problematic to sue saying that MORE treatment is needed
than the "standard"--there the insurance companies have us because the
standard of care UNFORTUNATELY is what it is--THAT is what we need to
work to change!!!)
You know I am reading responses on Lymenet where people say "I have all
the symptoms of Lyme and Igenex testing finally proved it...and I've
improved on treatment..."
Well the problem with that analytically is this:
A patient might well have Lyme disease.
But the positive Igenex test doesn't prove it.
A negative Quest test doesn't disprove it.
The testing is SO demonstrably bad that it really adds no reliable
information to the picture.
(it is a slightly different story if a proven reliable test shows a
SIGNIFICANT band on WB but the Dearborn criteria says that isn't
enough--IMHO if you have a UNIQUE band and the test is reliable, that
DOES add some information!)
ireallywant2believe
CaliforniaLyme wrote:
> Unproved Lyme Disease Tests Prompt Warnings
BIG SNIP
> Dr. Mead of the C.D.C. said he sympathized with Mr. Courcier's plight.
> But for now, he said, patients and physicians should rely on the
> recommended two-step process. The tests, he said, are accurate in more
> than 90 percent of cases of long-term Lyme infection.
>
> But he added that he was still troubled by the dispute. "We don't want
> to be absolutely dogmatic that it's our way or the highway," he said.
> "At the same time, it's clear there are tests out there for which there
> is really precious little to support their accuracy."
THAT is the point. There ARE tests out there for which there is really
PRECIOUS LITTLE to support their accuracy.
I challenge anyone here to show us what supports the accuracy (and
validity) of ANY Igenex test?
Show us the validation studies, the data, the peer review.
Same with Mdlabs. Same with Bowen.
And by this I am NOT referring to internal studies saying 300 of 300
people had what they were tested for.
Where is a validation study of the Mdlabs "spirochetal load" test?
Something describing the methods and technique, statistical data
supporting cut off points etc.
Same with a WB for Babesia done there.
Could all these tests be perfectly valid?
Absolutely.
Has ANY of these labs EVER produced studies showing that?
NO.
And Harris will talk his way around issues like that.
So there is NO BASIS for the BELIEF of Lyme patients and "llmds" that
these tests and these labs are "good."
The only basis for this apparently religious FAITH is the self
fulfilling prophecy standard.
And that is fine for a religion but not fine for science medicine or
medical testing. Sorry.
The figures cited in the article are DISTURBING. If IGenex is really
raking in $20-$30 MILLION DOLLARS A YEAR, well, immediately that shows
that Nick Harris has 20-30 million reasons to advocate for his testing.
It also makes one wonder--WHY wouldn't Harris PROVE the validity of his
testing??? If he can do it, why allow the stigma of uncertainty hover
over the lab?
Here's another BIG question: IF Igenex tests are so much better
scientifically than all the others out there, THEN WHY WOULDN'T THEY
LICENSE THE TESTING TO OTHER LABS INSTEAD OF KEEPING IT ALL IN HOUSE?
THEY'D MAKE MONEY AND LYME PATIENTS WOULD BE HELPED--WE WOULDN'T HAVE
TO CONVINCE DOCTORS TO SEND THE TESTS TO THESE LABS, EVERY LAB WOULD BE
DOING THE "GOOD TESTS."
This really has the taint of scandal.
AND REMEMBER GENSYS
The self fulfilling prophecy standard has been proven problematic
because many doctors diagnosed many patients AND decided treatment on
the basis of proven fraudulent testing--in fact they were producing
results but not doing any testing!
It was a crock of crap!
Bowen IMHO appears to be Gensys 2. I don't know that but I have heard
one VERY disturbing report that if true means it all is a scam (it has
to do with the same photo allegedly of "spirochetes" in a patient's
blood sample being used repeatedly and provided to different patients
as if it were from their blood sample! People LOVE that they get the
photo--but what if it is the same one over and over?)
And what is with the CRAP about CHARGING "donations"?
And what is with the "Bowen healing method"--NOT the kind of thing that
inspires confidence in scientific minds (but may be religiously
inspirational!)
And why is it that NO ONE ever seems to test NEGATIVE for ANYTHING
there? Not only is EVERYONE positive for Lyme, but also every other
tickborne disease known to mankind!
Something is rotten in the state of Lymeland! Again.
over...@hotmail.com
don't see any fairness here.
Think I really want 2 believe is either Nowakowski (spelling?) or
McSweegan.
CaliforniaLyme
No, it is terrible.
Why couldn't they have done an article about how terrible the two-tier
system is>? That would have made more sense.
CaliforniaLyme
letters AT nytimes.com
dali
>there? Not only is EVERYONE positive for Lyme, but also every other
>tickborne disease known to mankind!
because Bb is much more than a tickborne disease.
Sewer Rat
> The testing is SO demonstrably bad that it really adds no reliable
> information to the picture.
>
> (it is a slightly different story if a proven reliable test shows a
> SIGNIFICANT band on WB but the Dearborn criteria says that isn't
> enough--IMHO if you have a UNIQUE band and the test is reliable, that
> DOES add some information!)
Yes, ELISA+WB can be useful. The point is that we need to know if a lab
has reliable testing. How to know this? Testing the testing?
How do we know we can trust all the other tests in the world?
sewer rat
> THAT is the point. There ARE tests out there for which there is really
> PRECIOUS LITTLE to support their accuracy.
>
> I challenge anyone here to show us what supports the accuracy (and
> validity) of ANY Igenex test?
>
> Show us the validation studies, the data, the peer review.
Yes, this is a problem. We have a lab in Germany we think is a good
choice. It always perfoms a WB if you request it, AFAIK it reports all
bands, and the test was developed by someone who published about Lyme in
te 80s and 90s. But I haven't seen data that shows I can trust the
tests, maybe it exist though.
> Here's another BIG question: IF Igenex tests are so much better
> scientifically than all the others out there, THEN WHY WOULDN'T THEY
> LICENSE THE TESTING TO OTHER LABS INSTEAD OF KEEPING IT ALL IN HOUSE?
> THEY'D MAKE MONEY AND LYME PATIENTS WOULD BE HELPED--WE WOULDN'T HAVE
> TO CONVINCE DOCTORS TO SEND THE TESTS TO THESE LABS, EVERY LAB WOULD BE
> DOING THE "GOOD TESTS."
Excellent point!
> And why is it that NO ONE ever seems to test NEGATIVE for ANYTHING
> there? Not only is EVERYONE positive for Lyme, but also every other
> tickborne disease known to mankind!
I think we are all infected, unless noone ever touched you or you never
touched something another one has touched. This proves that Bowen is
very accurate.. (j/k)
ireallywant2believe
HUh? What does that mean??? Talk about unintelligible responses...
dali
<ireallywa...@yahoo.com> stated:
It was just recently discussed.
Chuck P Adams
Go sell wrist bans in CA and try telling them they have a Lyme problem
there.