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.

Skip to next paragraph

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.

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.

From 1992 through 1994, 50 serum samples were sent to participants of the
survey. Each laboratory received 28 serum samples from individuals with Lyme
disease according to the case definition of the Centers for Disease Control
and Prevention and 22 serum samples from healthy individuals.

Unfortunately, the serodiagnosis of Lyme disease by participants had not
improved.

The specificity of the Lyme disease assays steadily decreased from
approximately 95% to approximately 81% during the 3-year period of the
survey. False-positive test results approached 55% with some of the serum
samples from healthy donors. A serum sample containing antibody against
Treponema pallidum was reported as positive by 70% of the participants.

Maybe he could sit down with these fellows and 'work things out'

Ha......ha...just kidding

What is it gonna take to stop these evil people?

And here is the thread where the story was "supposedly" squashed.
http://flash.lymenet.org/ubb/Forum1/HTML/035904.html

There are so many things wrong with this article -- talk about unscientific -- just remember IGeneX says they have 50,000 to 75,000 patients annually and only 6 complaints from doctors and patients.

Hubby has had both positive and negative tests from IGeneX and I would bet many of you are in the same situation -- they sure can't say that the lab finds Lyme in everyone.

The state of New York is so confused anyway -- hubby's tests from Stoney Brook Lab in New York have a statement printed on the bottom saying something to the effect that New York does not recognize the ELISA and Western Blot tests as definitive in diagnosing Lyme disease. Try telling that to the "duck" doctors though.

Where's the NY Times hard hitting article on the fact that OPMC had to stop harassing doc's for prescribing long-term abx for lyme patients ? Couldn't stop the doc's, so we'll go after their labs. Right ?

If Gomer Wormser thinks he's going to get long-term abx treatment stopped in PA., then he truly is dumber than I thought. Can you imagine what the switchboard at the capitol will look like if that legislation rears it's ugly head ?

These IDSA pea-brains lost in NY, so their trying to retaliate in PA. We'll shut them down again, and again, and again, until they finally dry up and blow away like their antiquated research.

Don't lose heart, the battle to get adequate treatment is a long one, but one we'll ultimately win. It took AIDS patients a long time and their still battling. We have the sheer numbers and the truth on our side.

quote:

---

Originally posted by Ireallywant2believe:
[B]
Unproved Lyme Disease Tests Prompt Warnings - New York Times http://www.nytimes.com/2005/08/23/health/policy/23lyme.html?oref=login

Unproved Lyme Disease Tests Prompt Warnings
Reprints
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?

---

Bump. This requires a response from EVERYONE.

Dear Mr. Courcier,

After reading today's article in the New York Times entitled ``Unproved Lyme Diesease Tests Prompt Warnings'', I am outraged that you enabled such an article to be printed about you.

As one who has been down this path, and thankfully, correctly diagnosed after years and years of misdiagnosis, finger pointing, head shaking, and I don't knows, I can't believe this article was published and the damage it could cause Lyme patients.

You had 2 positive Elisa's from different labs, a positive Western Blott from IgeneX, and (big shocker) a negative WB from Quest, yet you believe you don't have Lyme? Did Quest labs even give you the band readings (or do you know what the band readings are?) Hello??? You obviously haven't done any of your homework.

Or you would have known that antibiotics cause a die-off of bacteria, which release a ton of toxins into your system, causing you to feel worse. It's called a `Jarisch Herxheimer Reaction'', or herx. Which is why you felt worse taking antibiotics. And you bought into a non-diagnosis?

I didn't see ANY mention at all for testing for co-infections. Did you know a tick bite can give you up to 5 different infections also? Did anyone even bother to test for them? Erlichiosis, Babesiosis, Bartonella, Mycoplasma, Brucella...

(I am putting lots of blanks in this letter, because my assumption is at this point, reading large blocks of text probably has become difficult for you.)

I too believed the `negative' test results I got from 4 different Quest tests.... Until I asked to actually see the results. A Western Blott shows band readings that are antibodies specific to Lyme. The one used by Quest only tests for 3, while IgeneX uses 12. Lo and behold, there were positive band readings on the Quest tests, just not enough in most physician's desk guides (although they have been updated) for them to consider the test results `positive'.

My intent of this letter is to hopefully put some thought into your head, so when your symptoms continue to progress (have you started seeing little black spots and lots of floaters yet?) or the neck pain kicks in, or the dizziness knocks you flat, or the bone pain
makes you think you have cancer, or your heart and brain really start to get affected ( I ended up with lesions on my brain, which have almost disappeared after 9 months of antibiotic treatment and another 9 months of homeopathic treatment and lifestyle

changes).... And when the doctors still can't tell you what's wrong (gee, maybe it's MS, so let's do a spinal tap to `rule it out'), you'll end up right back where you started... With a Lyme diagnosis, and under the care of a Lyme Literate Medical Doctor.

Signed,

A successfully treated Lyme patient (undiagnosed for 10 YEARS!)

P.S. when you come to your senses, start searching the web. www.lymenet.com would be a good place to start

Included in that information I sent was the published report of testing problems mentioned above. So, they knew it. Also sent were similar reports from around the world. And a copy of the FDA advisory.

This is intentional. I will never again trust the NY Times to do honest journalism. Do we have to wait until someone in the publisher's family dies of lyme before they decide to take this seriously?

This is beyond disgusting.

and "the ELISA test often produces false positives!!??? HA! That's as crazy as all the other garbage in this article!

Thanks 8man, I agree whole-heartedly!

Ann - OH

[quote]
the infectious disease doctor ruled it out,but didnt know what it
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,etc..
like i did 11 years ago,,,only they will die because im sure this gives our
low life government a step above lyme disease suffers...

Wormsler wont stop till he
kills a bunch of people,clinical trials cotradict each other,,the CDC,,says clinical diagnosis.Were does this man have or even think he has the right..

Half the labs failed a lyme proficency testing in 1997...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 a tick bite
etc...

i went from 190lbs,,,to 140..my stoneybrook 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....my spasmed bowels and bladder,started workink also after the iv.

thats all the clinical trials needed,for myself....390.00
to save my life was much cheaper then being hospitalized every few
weeks..on midiagnosis,,uneducated doctors made..

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 extended lyme treatments stopped,in all states ,,,even on
patients who actually need them...

he is already trying to stop treatment in
Pennsylvania,,,and has even sponsered a bill.

what kind of fool is he, i got bit out east..

Arthur Sulzberger
Publisher
NY Times
229 West 43rd St.
New York, NY 10036-3959

The omsbudsman, which they call the public editor, can be reached at:

[email protected]

Phone: (212) 556-7652
* Address: Public Editor
The New York Times
229 West 43rd St.
New York, NY 10036-3959

You might be interested in this article about the NY Times in Business Week:
http://www.businessweek.com/magazine/content/05_03/b3916001_mz001.htm

This is a vendetta by the Times, not journalism.

The supression of others finding and printing the 'meat' of the story isn't that hard ..either..
the head honcho's interests are known at the top pf the chain..

and it simply trickles down..
so when a reporter comes to them with a compelling story that they know will not sit right with the 'owners'..
they simply say something like

'I just don't think our readers will be interested in this..
why not try a story on blah-dee-blah instead'

Then they get someone doing this, and despite an outpouring of letters from the PUBLIC, they printed it anyway.

Mo

Looks like he bounced back with a vengance.

I totally respect everyone who wrote the Times and the reporter earlier and was glad as anyone to hear the story had been quashed.

Now is when we have to write to the Times at the addresses Lou provided. I sure hope some physicians step forward and write too.

Here is what Lou said:
[quote]
Instead, might try the publisher and omsbudsman, or send a copy of your letter to the editor to these two also:
Arthur Sulzberger
Publisher
NY Times
229 West 43rd St.
New York, NY 10036-3959

The omsbudsman, which they call the public editor, can be reached at:

[email protected]

Phone: (212) 556-7652
* Address: Public Editor
The New York Times
229 West 43rd St.
New York, NY 10036-3959

You might be interested in this article about the NY Times in Business Week: http://www.businessweek.com/magazine/content/05_03/b3916001_mz001.htm

This is a vendetta by the Times, not journalism.[end quote]

Ann - OH

Ann-OH

[quote]
June 21, 2001
Dear Friends of IGeneX, Inc.

Just a note to let you know our 2-year investigation by HCFA (the federal agency that controls laboratory and Medicare licenses) is over and we were successful. They indicated that we are in compliance with all regulations and are free to go about our business.

We will update you on our progress with the FISH test, as that is the only assay that we have not re-submitted for re-approval.

[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected]

quote:

---

Instead, might try the publisher and omsbudsman, or send a copy of your letter to the editor to these two also:

---

I would also suggest sending a copy to Poynter Online, a site which deals with journalism - and from what I hear, a site which every journalist in this country (and many abroad) read. The address is http://www.poynter.org/column.asp?id=45 The contact email is [email protected]

Lay people sometimes contact this site, and all sorts of journalistic dilemmas get hashed out there. Surely a good place to ask "Why isn't the press covering this pandemic?"

As for me, I was thinking about writing the NYT and pointing out that in December of 2001 agencies known as the HCFA/CLIA, which I guess are involved in lab safety and licensing, tried to shut down Igenex, apparently at the behest of the CA Dept. of Health and the CDC. Anyone remember this story? As I recall, they couldn't shut Igenex down becuase not a damn thing was wrong with their (Igenex's) methodology. Wish I could remember the details, but I am very sleep deprived today.

These diagnostic labs are not reporting the bands that ARE present, and SPECIFIC when they show up on their own tests. They make the criteria for positive SOoooooooooooo narrow by requiing a certain number reaching a threshold intensity to show all together.

The data (on the bands +) is VALID data they are not reporting to the physicians.

Barb

Lymeinhell wrote:
I too believed the `negative' test results I got from 4 different Quest tests.... Until I asked to actually see the results. A Western Blott shows band readings that are antibodies specific to Lyme. The one used by Quest only tests for 3, while IgeneX uses 12.

Lo and behold, there were positive band readings on the Quest tests, just not enough in most physician's desk guides (although they have been updated) for them to consider the test results `positive'.

quote:

---

Originally posted by bpeck:
And there you have it in a NUTshell.

These diagnostic labs are not reporting the bands that ARE present, and SPECIFIC when they show up on their own tests. They make the criteria for positive SOoooooooooooo narrow by requiing a certain number reaching a threshold intensity to show all together.

The data (on the bands +) is VALID data they are not reporting to the physicians.
Barb

---

Wasn't Dearborn precisely about telling the CDC that their standards missed far too many cases?

and all the letters and info provided regarding innaccuracy in testing and CDC criteroa interpretations do not.

Maybe if everybody resends the documented info refuting this reporters 'take' on the situation, we could see of they then print the 'other side'..
but if they don't I wouldn't blame the reporters.

I was as disheartened by this Times article as everyone else.

I've known quite a few reporters and editors (including some at the Times), and usually, what drives most people in the profession is a desire to find and write the truth. Sometimes that works, and sometimes, it just doesn't. My sense is that the Times reporter probably wasn't out to "get" anyone but was really just trying to communicate what he felt to be important information.

There is actually very little mainstream press attention to this disease. I'm fascinated and puzzled by this.

To me, it seems tailor-made for some enterprising investigative and feature writing team.

Since I've been diagnosed, I've been in touch with a popular radio talk show host in my area who often deals with complicated, thorny issues. I thought she could get it on the air, but she ultimately didn't agree to the story. she said it was just too complex and too multi-faceted for the scope of her program.

I know there's a kind of contagion that spreads through the media (in cruder words, I've said it's an incestuous industry). Stories catch fire, flame, then burn themselves out. The "real" Lyme story hasn't caught fire yet...except in small publications and local papers. The national story that's still written as:
It's Tick Season: Here's What to Be on the Lookout For...

Then, they talk about high grasses, deer ticks and long pants. Bullseye rashes and antibiotics.

Here's what I think the Lyme community needs to have (and maybe it does; I'm just unaware of it):
Lyme-literate medical professionals who are willing to speak on record (not just primary care docs but also mental health professionals, etc)
Articulate subjects who have dominant Lyme in different areas (ie someone who's been affect physiologically, another who's primarily had neurological symptoms, etc.)
...somebody political...
Plus all the statistics abd studies I know a number of Lymies have been accruing.

Then several more high profile people need to be afflicted with this disease (which I wouldn't wish on anyone), and the media will start telling a different story about Lyme.

Most people have NO idea how complex and debilitating this disease can be.

Someone mentioned how difficult it initially was to get AIDS stories told. Once it caught fire, though, it spread. I was a reporter on five separate cover stories about that disease.

I'm looking forward to a time I feel well enough to tackle this. Right now, making lunch is a challenge that seems insurmountable.

Sorry for the long post; I just wanted to share my own experience.

I'm sorry. It is time to admit this was done to us intentionally, and with full possession of the facts. It cannot have happened for so long that the NYTimes and other majors have just not understood the problem. They do, and have taken the other side. It was not a one time occurrence but an on-going policy that has been demonstated any number of times in what they have printed and what they have not printed.

Have no idea why. But I am very disillusioned with the media at this point.

A child could see through this.

I see a threefold problem in the current news out there: propaganda/advertising, entertainment, and fear-based stories are what it's all about.

That said, a good plan of attack would be if someone could come up with some snappy soundbite or short phrase or headline that could snap people out of the current misinformed thinking about Lyme. At least get people thinking about it differently.

My Lymebrain isn't really up to the task, but something for example like the fact that you can get it from other creatures besides ticks - fleas, spiders. If people knew just that, it might spark something.

Dunno, just a thought.

.... since we OBVIOUSLY don't have lyme!!!!!

just want to agree that when Igenex finally gives NYS enough proof (or when the state extorts enough money out of them) to accept an Igenex WB as proof of lyme,

it would seem that we will stop being called crazy by the masses, no?

I was very disheartened to read the August 23 article in the New York Times entitled ``Unproved Lyme Disease Tests Prompt Warnings''. Mr. Courcier, who was mentioned in the article, is just another frustrated Lyme victim who doesn't yet understand the intricacies or the politics behind this illness.

Instead of attacking one of the best allies that Lyme patients have (IGeneX labs), why doesn't the Times focus on some of the real issues:

* Why has the United States Government ignored this growing Pandemic? This is bigger than HIV/AIDs ever was and everyone is at risk
* What kind of a burden is this disease putting on our healthcare system and our social security system? What will the future burden be as more infections occur?
* Why is there only one true pediatric lyme specialist in the entire country, when thousands of children are being newly infected each year?
* Why are most Lyme literate physicians not taking new patients or have waiting lists that are months to years long?
* Why are other physicians not interested in or scared to learn more about treating chronic Lyme disease? Could it be that they are afraid of losing their medical license?
* Why are the front line physicians (emergency rooms physicians, family practitioners, etc...) not being better trained to identify early stage tick borne illness so that it doesn't get to chronic form (which is much more difficult and expensive to treat)?
* Why are some children that have been diagnosed with Autism suddenly showing much improvement when given antibiotics for Lyme disease? Is there a connection?
* Why are so many families infected? Is the disease sexually transmitted? Many experts think so.
* Why do many couples divorce when confronted with chronic Lyme disease? It's almost more difficult on the family unit than a cancer diagnosis, because of the financial strain and the complexity of the disease

I could go on and on, but I'll stop here. I urge you to rethink your position on the stories you run with regard to Lyme disease. I won't try to educate you on the differences between the standard labs and IGeneX tests, as I'm sure you have gotten many other letters on that topic from other Lyme sufferers.

So what choice do they have but to actively DISinform using the media and publish, publish, publish in the medical press so that "their views" remain the dominant view.

They are helped in their enterprise by the fact that the issues related to Chronic Active Lyme and co-infections is soooooo very complex. Keeps the media out of their hair, keeps lots of doctors and researchers out of the area too.

What researcher, what journalist in their right mind would choose to take on such a sticky issue?

The potential problems far, far outweigh the potential rewards.

Look who's in the field: people who have direct and intimate reasons to do so.

There are so many other deserving "causes" to embrace, so you'd have to be masochistic to embrace Lyme if you didn't have to!!

How do we make our cause palatable and sexy for journalists and a potentially feasable subject for young researchers in need of a career? At the moment it is neither.

Nelly (in France)

quote:

---

Originally posted by ticktox:
Lou,
I absolutely agree that this article was a deliberate effort to discredit Igenex and is part of an ongoing campaign. The powers that be (CDC,NIH,state depts.of health, Steerites, Yale, et al) will not stop until they've shutdown our labs and driven the LLMDs out of the business of treating Lyme. They are also trying to discredit websites like Lymenet. In other words they are deliberately trying to take away the public's ability to get properly diagnosed and treated. After five years of observing their efforts, it is the only conclusion I can come to, unfortunately. Why they would do this I do not know. But I do know it is not being done out of ignorance.

---

Dear Editor,

'I feel compelled to write to you all the way from Scotland to express my disgust at the arrogance shown by the CDC in the article on Lyme Disease Tests published on 23rd August.

The CDC appear to be claiming that their recommended test methods and interpretation are virtually foolproof and that everybody else must therefore be wrong. But how can they possibly know that they are producing that level of accuracy when there is, according to them, no better method of Lyme Disease detection available? If I suggested to you that there was a hog in the room, you could check that for accuracy using your eyes, your nose, your hands and your ears. You could even get 10 other people to go and have a look. The CDC seem to be suggesting that their methods can detect every hog just by using their ears and that nobody else has ears capable of doing the job! How do they know they aren't missing the hogs who are the strong, silent type? Who is cross-checking with eyes or noses? How do they know that Igenex do not have better ears?

AIDS is about homosexuals and needle sharing. The govt and certain medical education facilities did not give these people AIDS. Okay, so they say, but they can at least pretend to be liberal and open minded to different lifestyles.

LYME is not about feeling bad for a victim or being liberal about a sect or part of society. No one feels bad when something happens to "just anyone". It's just not a good story.

What about the text used from Amy Tan's hallucination? Did it have to be a G-damn naked guy? Can someone say something in print that everyone will read without it having to do with genitalia? Jeeze, I'm sorry, but I wanted to scream "not again!"

Just for fun, If I thought I might hallucinate about naked guys coming to me, I'd start picking out who it was I wanted and what lyme strain or abx to take. Come on!

I think a lot of these MDs are afraid of losing their status from old fraternity days. They are living a hazing that happened between Meds and Govt. They cannot release this story. They can't go into hiding or under govt. protection... right?

When you are in the service, you report when told. It is not out of the ordinary to be tested for pharmaceutical trials, studies.

Lyme was tested on animals and the anticdote was working as far as the scientists eye and research could determine, but it can not be proven until tested on a human subject.

How many military bases, sites, are on the east coast with recruits easily available for human testing? Why does it appear the east coast is the endemic area?

quote:

---

Originally posted by lymeloco:
Only in America......do we use the word
'politics' to describe the process so well:
'Poli' in Lating meaning 'many' and 'tics'
meaning 'bloodsucking creatures'.

Couldn't pass this one up!

---

and for those of you who may subscribe to the theory that Lyme was biologically altered and placed within the tick .....

I did write to the publisher before the article came out begging that they research the entire story...told them that my treatment is the proof that IgeneX was correct with their results.

I have such limited time and energy these days. Debating whether I will spend hours on another letter...

We must all when we feel well do what we can. I have helped start a second organization here in N.C. and we are hoping to keep a patient registry of those people that have gotten bitten and ill here in the state. We plan to use it as a tool to educate officials and the medical community.

I have to do something now that I am back on one foot at least...the anger and just complete disgust at how lyme disease and coinfections are being disguised is enough to make me spontaneously combust. So I have to stay busy and do my best to do something about it.

It is amazing to me that the propaganda wheel just keeps on turning...

This journalist is not a journalist but a sheep. He just follows his orders not getting at the truth. It is amazing to me how so many ignoramasses (sp?) have such power they have not earned nor know what to do with. Scary...

Mr. Courcier is quoted, "Its been a hell of an emotional roller coaster" - as if the ride is over...He needs to realize it has only just begun if he doesn't follow through on some kind of treatment...

ps - Mayo Clinic, Minn. showed me negative on 2 bands and 5 bands of IGG & IGM on western blot! Very disgusted since I was posiitive thru IGX and lately BOWEN labs for lyme disease!

bettyg, Iowa

I do, however, think that this article was written with bias.

This quote, for example; "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." is hersy. Additionally, they didn't follow it up with what Dr. Harris had to say about the claims.

Additionally, they ended the article on this note, "At the same time, it's clear there are tests out there for which there is really precious little to support their accuracy."

Hmmm... I wonder who the reporter believed.

Plus Courcier didn't really have an explanation for why he didn't accept the Lyme diagnosis--was it just because he was sick of taking medicines? Was it because no one explained to him that you feel worse (ie. herx) when you start taking the medicines.

When I was diagnosed with Lyme disease last summer I told my journalism teacher about how much trouble it took for me to get diagnosed. I told him about how I went to the doctors with a bunch of symptoms and they told me they didn't think anything was wrong with me--even though I had told them I had recently been hiking where there were ticks.

He was immediately skeptical of the doctors who had no answers and ignored me--not the doctor who helped--and he does an occasional article for the NYT (--he did NOT write this article). I have been thinking about bringing this up with him, but I am not sure what to say.