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» LymeNet Flash » Questions and Discussion » General Support » URGENT - From Pat Smith, Igenex under attack

   
Author Topic: URGENT - From Pat Smith, Igenex under attack
ellenluba
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Again we are faced with an attack on entities who have most helped our patients. If they cannot get our docs, they will find another area to hit.

The NY Times is in the process of writing an article based upon the last biased piece the CDC did on testing that appeared in the MMWR.

The Times article will apparently target IGeneX as the root of all Lyme problems.

We need to act NOW to stop this travesty. We needpatients to immediately emailor fax tomorrow to the NY Times and tell how Igenex has helped them with getting a diagnosis and thus treatment, and how it has positively affected their lives.

The reporter's contact information follows.

Please do the following:

From Wednesday July 6onward:
Email [email protected]

OR

Thursday, July 7 onward:
Fax Dan Hurley at 973 744 5024

Also fax comments to (212) 556-7306 (NEW YORK TIMES SCIENCE SECTION FAX NUMBER) FAX NUMBER WHERE ALLSUPPORT LETTERS SHOULD BE SENT
(ADDRESS ALL THREE EDITORS BELOW. RE: "Dan Hurley
article on Lyme Laboratories"

NEW YORK TIMES SUPERVISING EDITOR/SCIENCE SECTION:
LAURA CHANG

EDITOR:
DAVID CORCORAN

EDITOR:
RICK FLASK

Tell him Igenex helped you. Tell him about your experiences with inaccurate testing in other labs if you have had those experiences and how they kept you from being diagnosed and treated and what a hardship it was on you and your family.

We cannot allow the Times to print another negative Lyme disease article!

Thanks.

Pat Smith, President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 information line
732 938-7215 fax www.LymeDiseaseAssociation.org

[This message has been edited by ellenluba (edited 07 July 2005).]


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Tincup
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I will do it first thing tomorrow morning.

We CAN'T let them attack OUR labs!

Anything else we can do?

Grrrrrrrrrrrrrrrrrrr.....

Hey EllenLu..

Good to see you!

[This message has been edited by Jenifer (edited 08 July 2005).]


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FightFireWithWater
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Up.
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k-lyme
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Thank you Ellen. Gosh, when will this battle end!?!?!?!?!?!?!?! Here we are all suffering, and people just want to make it harder for us to survive. You'll be darn tuttin sure that I'll be faxing in my two cents worth.
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k-lyme
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Thank you Ellen. Gosh, when will this battle end!?!?!?!?!?!?!?! Here we are all suffering, and people just want to make it harder for us to survive. You'll be darn tuttin sure that I'll be faxing in my two cents worth.
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Tincup
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Up for the morning crew.

Let's help IGeneX like they have helped us.

------------------
If you get the choice to sit it out or dance...



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beachcomber
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Not to get anymore britches in knots but, we need to look at both sides of this issue. Igenix has been under scrutiny for a long time. There are some legitimate questions about the lab's practices & how the specimens are shipped to them, the freshness being a big issue.

Also, some independent labs are challenging why such a high percentage of Igenix and Bowen tests come back positive. I am not saying there is anything wrong with that - quite the contrary. But, this is a free country and skeptics are allowed to question these things.

In some ways, this may be good for Igenix. The investigation may come back with clean and clear evidence that their methodology is good science. It is not always bad that things are checked and questioned.

I, for one, have never fully understood how/why the Igenix tests are considered so reliable. All of my Quest lab test have come back positive for Lyme. I wonder what Igenix does for $900 that makes it more reliable. I think some of us need to be educated about why the labs differ. Maybe these articles will help to educate those of us who are in the dark about how different labs test.

As a proponent of free speach, I support anything that will get those of us who are ill closer to a cure. We need open and free dialogue. And, we need to put the bogus therapies and practices to bed. This article will be just the beginning of a long discussion about the accuracy of our testing methods & might help in the long run.

Keep an open mind.

Bc

PS: Pat: The Times has printed as many good articles about Lyme as they have printed bad ones. You can't overlook the exposure that some publications give to our disease. Free press can be our ally.


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breathwork
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Here's my letter....

Dear Mr. Hurley,

I understand that you are preparing an article concerning lyme disease
and Igenex Labs in Palo Alto, CA. Given the wide spread influence of
your newspaper as well as the complexities of lyme disease and the
political debates surrounding its diagnosis and treatment, I hope to
convey the widespread effects that your article on one laboratory could
have on thousands of patients and their physicians.

I am a therapist and participate in a peer review group. Further, I am
a trauma nurse, BSRN.

In the past six years I have been denied treatment and told that I need
counseling by the head of infectious disease at both Stanford Univ.
Hospital and Palo Alto Medical Foundation despite positive serology
reports from Igenex which were well beyond the reporting standards of
the CDC. Stanford offered to treat me after I mentioned that my brother
was on the board of trustees for the university. The nurse from PAMF
followed me to my car to explain that the doctor was not allowed to
treat lyme disease as doing so would threaten contracts with HMOs and
PPOs. Clinical diagnostic criterion were not considered in either case
in the least.

I offer these stories to illustrate the medical community's bias
against lyme disease and the patients that suffer for years needlessly,
without treatment, without simple recognition of their clinical
presentation, much less serology reports.

This disease is a political hot potato. To diagnose the disease is
difficult as it prefers to live in tissues rather than in blood. The
Elisa test suggested by the CDC and required by most insurers looks for
bacterial DNA in the blood only, hence it is largely unreliable as a
measure of active infection. A negative Elisa result is grounds for
denial of reimbursement of treatment costs and actual treatment in many
HMOs and PPOs. It is also the basis for shaming many patients.

To find an accurate antibody profile for lyme disease is also difficult
as the lyme bacteria can express any number of outer cell proteins at
any given time. These outer cell proteins are what the human host
recognizes as alien. Human antibodies are created by the immune system
to those proteins. The specificity and high quality of the Western
Blot testing done by Igenex is extremely helpful to the physician
treating lyme disease in determining early vs. late infection, or
reinfection from a new tick bite.

Lyme disease, after the brief period of initial infection, can be
difficult to treat. It can become widely disseminated and effect many
organ systems. It can elude the immune system as described above.
Further, it has the ability to cloak itself in the outer cell coat of a
white blood cell, the wolf in sheep's clothing as it were. It also can
convert to a cystic form when challenged beyond is abilities to evade
detection and destruction, then revert to its motile form when the
threat has passed. It is a most remarkable bacteria. I would stand in
awe of its abilities were it not the cause of so much misery and loss
for my family.


Perhaps you will recall Smith Kline Laboratories. They no longer exist
as a Smith Kline subsidiary. One factor in their sale was that Western
Blot testing was done using reagents from European strains for lyme
disease rather than those found in the US. You perhaps also know that
Smith Kline was the creator of lyme vaccine. If a patient suspected
that they had lyme, then tested negative, seeking the vaccine would
naturally follow. The FDA strongly suggested removing the vaccine from
the market, and Smith Kline did so citing less that anticipated sales.
Class action suits for unfortunate vaccine reactions clearly had a
stronger influence on the vaccine's withdrawl, not to forget the
on-the-record comments of the FDA vaccine approval committee members as
to its efficacy and dangers, after the fact.

Throughout the controversy, antagonism from insurers, harassment of
physicians who treat lyme disease and many years of lost livelihood and
quality of life for thousands of lyme patients, Igenex has maintained a
high standard for its laboratories. I know Dr. Harris personally, as
well as his employees. My daughter has done research in his lab on the
alteration of outer cell protein expression for her AP Biology class.
Interestingly, a Yale research group published very similar work six
months after her work was completed. Not only does he provide quality
testing, he furthers research concerning lyme disease and the
difficulties in testing for this bug in the human host. Yale's recent
research acts as support for the theories of why diagnosis is an art
which requires highest standards for testing.

Pre made testing kits cannot reproduce the specificity or quality of
testing that Igenex offers. Many insurers would love for such kits to
be the standard. Negative results at alarmingly high rates are
guaranteed. Accurate testing is not the goal.

Insurers have tried in the past to stop the work of Dr. Harris. In
repeated inspections and reviews the labs have passed with exemplary
results. Dr. Harris is a man of integrity. His research is solid and
his laboratories are a needed asset for the diagnosis and treatment of
tick born diseases. If you mention the inspections of his laboratories,
do not neglect to mention the source of complaints and that the results
of the inspections were exemplary.


Not only do we face a challenging disease, we face denial of insurance
payments, ridicule from physicians who tow the line for insurers,
misunderstanding in our communities and personal financial ruin. The
possibility that your article may challenge the one laboratory that
operates beyond reproach, that has faced review and come out the other
side with gold stars, and is run by a man that I know to come from a
position of integrity and compassion, is another blow that no lyme
patient should have to bear.

Please recognize the complexity of this disease and the further
complexity of the political and financial climate surrounding it. I
cannot think of any bacterial disease that challenges so many and whose
victims are being held hostage by insurance companies. Igenex labs
strive to develop accurate testing modalities for lyme and other tick
borne infections. Without this sort of research and the development of
a clear laboratory test for this disease thousands of us suffer
physically, financially and emotionally as insurers are able to deny
coverage for comprehensive treatment on the basis of testing kits and
less accurate testing facilities. And, this happens despite the CDC
determination that diagnosis of lyme should be made on a clinical
rather than a serological basis.

Physicians are losing their licenses for being brave enough to treat a
bacterial infection appropriately. Yes, an unscrupulous few are taking
advantage of the grey areas of diagnosis, but these doctors are in the
minority. They further the difficulties of finding a physician of
integrity to treat genuine lyme disease. They are the ones who receive
the press. The press puts the spotlight on quacks, and the heroic
physicians and laboratories who take this disease seriously are the
ones who lose. The patients lose, often times they lose everything.

You are in a position to influence the direction of lyme diagnosis and
treatment for thousands of patients. Please take this responsibility to
heart. Take the time and effort to research this long standing, complex
issue and recognize that not just one laboratory will be effected by
your story, an entire community of patients, physicians and insurers
could win or lose based on the words that you print.

Thank you for your consideration.


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breathwork
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To answer your question about the differences between Igenex and Quest...

Igenex tests for far more Bb specific bands than Quest...
And the tests are all done in house without the use of prepackaged kits.

Quest uses test kits rather than using their own full blown Western Blot tests. They detect fewer antigens.

Igenex only does testing for tick borne diseases, they have the most experience in developing new tests as well as performing all tests in house.

Western Blots are not simple tests in which you add one chemical to another to see if it turns blue, like a pregnancy test. When done well they require a higher level of skill and facility than most commercial labs offer.

That is why a lab which is specific for TBD's can do the tests more reliably than a large commercial lab.

Your being positive with Quest is terrific! However, you are not the average lyme patient. You are one of the fortunate ones.

Bottom line, if you are negative with Igenex, you know that it's an accurate negative based on antigens in your blood.


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Ireallywant2believe
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I just wonder how anyone can know in advance what kind of story a reporter is going to write? I remember before that NY Times story about "Stalking Dr Steere" that people thought it was going to be a good article. And people thought before the "Nightline" episode that it was going to be positive (it ended up with Ted Koppel comparing treating long term with antibiotics to urine therapy, no offense to anyone who believes in urine therapy, but not a good comparison for us).

The folks at NY Times are pros, which doesn't mean I agree with them but we're talking a journalistic institution.

I wonder if a campaign of letter writing trying to influence a story claiming we know in advance what it is going to say, will have a positive effect?

I worry that it well get their backs up.

Trying to get stories buried didn't work for Richard Nixon and he was president of the United States when he tried it!

I thought one of the letters I saw in general by NP40 might really hurt. No offense to NP40 I thought your letter was very sincere and happen to agree that Igenex is targeted and has been for a long time. But the threats about lawsuits and bashing of the reporter and the paper might produce a backlash. And the comments by lymeraja are just very incendiary I guess is a good word.

Since we do agree that this is a public board and one that is prominent on a google search and linked to from all over the net, it might also be one that the reporter might see. Sometimes too such stories can lead to other stories and this site might be visited during research.

I wonder if we might just try to say positive things about Igenex in some topic threads, and then if LDA thinks just FWD them to the paper instead of writing directly to the reporter and the editors and all and using threatening tones. I wonder if this organized letter writing campaign might not be a mistake.

The press really doesn't like attempts to intimidate them and at least some of the letters come off that way. They also don't like attempts to suppress stories and some of this stuff including Pat Smith's message posted by Ellen comes off that way.

I hope someone in touch with pat Smith, like ellen, would mention this to her. I don't really know how to get in touch.

I think some of the letters were really great, I just think they'd be better as posts on a topic thread later forwarded by Pat Smith or Igenex to the reporter or whoever they're in touch with that led them to think this story is coming out.

I hope np40 isn't upset. I sense a lot of passion in your letter and am sure many share your feelings. Lymeraja's posts, no offense, are really very conspiracy theory like and I don't think that sort of thing helps us credibility wise very much.

I've had some experience with the media.

Just my two cents, I'll send you the bill!


quote:
Originally posted by beachcomber:
Not to get anymore britches in knots but, we need to look at both sides of this issue. Igenix has been under scrutiny for a long time. There are some legitimate questions about the lab's practices & how the specimens are shipped to them, the freshness being a big issue.

Also, some independent labs are challenging why such a high percentage of Igenix and Bowen tests come back positive. I am not saying there is anything wrong with that - quite the contrary. But, this is a free country and skeptics are allowed to question these things.

In some ways, this may be good for Igenix. The investigation may come back with clean and clear evidence that their methodology is good science. It is not always bad that things are checked and questioned.

I, for one, have never fully understood how/why the Igenix tests are considered so reliable. All of my Quest lab test have come back positive for Lyme. I wonder what Igenix does for $900 that makes it more reliable. I think some of us need to be educated about why the labs differ. Maybe these articles will help to educate those of us who are in the dark about how different labs test.

As a proponent of free speach, I support anything that will get those of us who are ill closer to a cure. We need open and free dialogue. And, we need to put the bogus therapies and practices to bed. This article will be just the beginning of a long discussion about the accuracy of our testing methods & might help in the long run.

Keep an open mind.

Bc

PS: Pat: The Times has printed as many good articles about Lyme as they have printed bad ones. You can't overlook the exposure that some publications give to our disease. Free press can be our ally.


[This message has been edited by Ireallywant2believe (edited 07 July 2005).]


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Ireallywant2believe
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I thought this was a really good letter, really excellent and well written and credible. Really one of the best letters I've seen. Good job!

Only thing I think might hurt is the thing about knowing a story is coming out and I know that didn't come from the writer but from the LDA message posted by Ellen and I already posted that I think this might end up hurting us.

My alternative suggestion is that a topic thread or a few which have positive posts about Igenex and experiences with them, and discussing the problems with testing generally, would be better, and they could be forwarded by LDA to the reporter. And those positive threads would also be around for other reporters who might pick up on any story that comes out to see.

I do think the writer of this post did a good job in not saying the she knew there'd be a negative story and not attacking the Times or the reporter but just saying she wanted to share her experiences. The only thing I'd change is I think it shouldn't be addressed to the reporter but just posted on a thread like "Experiences with Igenex" or a similar title on which lots of us could post positive experiences we've had. I'd guess that there might be a few negative comments but that tons more people would post positive experiences like how an Igenex test helped them get diagnosed and treated and made such a big difference in helping them start on the road to recovery. I know lots of people would be lost without Igenex and lots of llmds feel better about treating when they've got some evidence in terms of a positive test.

I've heard the head of the lab lecture and he was impressive. If there is a negative NY times story, that would really be a shame.

quote:
Originally posted by breathwork:
Here's my letter....

Dear Mr. Hurley,

I understand that you are preparing an article concerning lyme disease
and Igenex Labs in Palo Alto, CA. Given the wide spread influence of
your newspaper as well as the complexities of lyme disease and the
political debates surrounding its diagnosis and treatment, I hope to
convey the widespread effects that your article on one laboratory could
have on thousands of patients and their physicians....



[This message has been edited by Ireallywant2believe (edited 07 July 2005).]

[This message has been edited by Jenifer (edited 08 July 2005).]


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lou
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Have there been any good lyme articles in the NY Times in the last 4 or 5 years? Maybe you could post these for us to see. Somehow they escaped our attention.

In fact, despite years of effort with legislators, hearings in multiple states, public protests, many letters to the media, we still are not getting fair coverage in the NY Times or any other major medium. So, I think it is fair to be worried that this will be the same old thing again.

Does anyone know who Dan Hurley is? When I googled him, I came up with articles on health in the NY Times, and a novelist. Is this the same guy or are there two? The NY Times mag article about Steere was written by a hired political writer with no credentials in medical journalism at all.

Beachcomber, you are indeed fortunate that your Quest tests come up positive. What you need to remember is that they miss a lot of cases.

It looks to me like the OPMC and the Steerites have a direct line to the management at the Times and this is our payback for that OPMC memo, three paragraphs that took us years to get.

If they want to do an honest job, then they can deal with the whole testing fiasco; if they are only going to cover IgeneX, then Pat and others are right to suspect it will not be favorable. The pattern of their previous coverage makes that a pretty good bet.

[This message has been edited by lou (edited 07 July 2005).]


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riversinger
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Seems pretty simple to me. In my letter, I simply pointed out the need for good research on why Igenex might be different than the other labs. Igenex gets more positive results because they use more strains in their primers than any other lab. With the multitude of strains of Lyme infections, that makes a huge difference.

Beachcomber, Igenex has been investigated multiple times. They have come out shining every time. I do not think the problem comes from their practices. And they certainly are not having an overly high positive rate. Even with people who are highly at risk for Lyme, they only show a 67% positive rate on the Western Blot.

Letting the NY Times know that Lyme testing is of high interest, and that Igenex labs has been significant in pointing the way to getting care that changed your life, is an excellent plan. THAT is a good story for them to print.

You don't have to get into all the details of the Lyme wars. Just this simple small area. Igenex Labs, certified in California and New York , makes it possible for people to identify a serious illness, treat it, and get better!!!! The alternative is continuing deterioration of health, for the many who do not show up positive in local lab tests.

------------------
Sonoma County Lyme Support
[email protected]


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Lymetoo
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My test from Igenex was CDC negative. How could I use this to my advantage in writing a letter?
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riversinger
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Lymetoo, did you have Lyme specific bands that were positive?

Many labs will not report all of the bands, only whether the test was positive or negative. If your doctor used the Lyme specific bands as part of his diagnosis, that could be what you highlight in the letter.

------------------
Sonoma County Lyme Support
[email protected]


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Biting Back
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My letter seems kind of lame in comparison to others, but I sent it anyway:

Dear Mr. Hurley,

I have had chronic lyme disease for 21 years. I went through every medical procedure under the sun for many suspected and quite serious diseases. Each test turned up abnormalities, but a diagnosis was not made until 2004. I should state here that while I was chronically ill, I visited physicians on a weekly-to-monthly basis with horrendous medical complaints.

My local physician clinically diagnosed chronic lyme disease in July of 2004. He sent my blood for a western blot to Igenex labs and the results were positive for borrelia.

I lost 21 years of my life to this sinister disease. I began taking antibiotics for the infection and I am finally starting to get my life back together, piece by piece. The Igenex lab tests are accurate. If nothing else would help to prove this, I can attest that my 21-year history of visiting physicians and emergency rooms is over. My search for a diagnosis is over and I am responding to treatment. It would be impossible for this to be a 'placebo effect.' If it were, I'm quite certain some of the ridiculous diagnoses and treatments would have 'cured' me many years ago (via the placebo effect). I have not sought medical attention for anything aside from regular visits to my physician for chronic lyme disease.

Thank you for your attention to this matter.


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breathwork
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And now I have shot my letter in the foot!

Middle of the night lyme brain said that the Elisa was the DNA test...when it's the PCR! I hate it when I screw up something so easy to get right.....especially when my credibility in a letter to a journalist is being considered.

OK, just another example of lyme brain working, eh?

Thanks gang....
Carol Ann


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Lymetoo
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Are you afraid of something, Martijn??

Thanks for the idea, River. I hadn't looked at my test results in years.

Yes, I do have several specific bands. [I was also given steroids in the past, which I'm sure altered my test results.]

I have equivocal or positive on these bands:

31, 34, 41, and 66 ... That should be enough!

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu


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bg
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Ireallywant2believe, would you kindly DELETE the duplicate, long post? Thanks!

I'll get busy & email now too.

bettyg, IOWA


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Lymetoo
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You keep urging us not to write letters.
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david1097
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If the lab is FDA approved and the tests are approved in the various states then what issue can there be? Anyone complaining about the lab does not have ANY argument. I can only imagine that they are picking up on the statements from places like the CDC which where negative on Igenex in general but specifically PCR testing which was not approved for diagnostic use.

I have heard that Igenex has initiated legal action in regards to the CDC statements, maybe they can add the NY times to that list of defendants.

As martinj says a positive WB test does not mean you have Lyme, it is a strong indicator but does not prove it. USE OF THE WB RESUTLS AT FACE VALUE CAN BE A BIG PART OF THE PROBLEM. I suppose the probability goes up with both WB ad Elisa as it is accepted by the CDC. With sequential tests like that the false positive rate diminishes significantly and this is likely why the CDC takes the two tests together at face value.

All of this has no bennifit for those that are sick and don't know why as the false negative rate also goes up even more than the false positive rate goes down. So that is where the detailed report that igenex provides is useful, it gives the Dr somewhere to look. IT IS FOR THE MOST PART A HINT OR INDICATOR. NO MORE NO LESS.

If you read the ILADs diagnosis and treatment guidelines, it says right in the document that a positive WB is not on its own a 100% indicator. People have to understand that. Trying to argue a point with someone (ie the news paper) one has to have all the facts correct.

The bottom line is that Igenex offers highly specilized and sensitive testing. Unfortunately, if the test results are mis used, particularly by the public then it will cause a problem for Igenex. Even Dr. Harris, if you ask him will tell you that the results provided by his lab are intended to be used by Dr's to aid in the diagnosis. Lyme specific band included.

One has to understand that the WB results are not like a barcode. Many times the entire blot has a dark background, making the interpretation more difficult. Unfortunately this is the nature of the bussiness and until some form of standardized method of WB intpretation can be published by some one like the national bureau of standards then this will always be a question from lab to lab.

So, it is a bit difficult to formulate a strategy as to how to best inform the reporter about Igenex except to say that it, while small, is the world leader in the testing for tick bourne diseases, it is here in this country and services the world with services that require a high degree of specialization and research and development programs that are aimed at improving the sensitivity and accuracy of testing and until the tests that have been developed are absoutlely 100%+ (reliable positive or negative) then the lab provides as much infomrationa to the Dr as possible to aid them in balancing the clinical signs with the tests results. The Clinical Dr them makes the decision as to what to do.

PLEASE do not mention Bowen in any letters. While Bowen might be OK, it has nowhere near the credentials that Igenex has. They are not the same class of operation PERIOD. Unfortunately the CDC grouped them together by implication (ie no direct statement). Every effort must be made to stop this from happenining in the future.


As far as a letter to the reporter goes the best approach I can think, is something like a recount of my own situation, (maybe others have a similar history, or at least pert of it) which is:

I was very sick and getting worse month by month.
Lyme was unknown in these parts. I went for many many tests and many many specialists. Every test was negative with NO EXPLANATION AT ALL from the labs, all you get is YES or NO. Up to this point I had been tested for a number of brain related infectious diseases all with negative results- Lyme included) The diagnosis was degenerative brain disease of unknown origin... from neurologists, many of them. I was even told that I had atypical CJD.

Finally I stumbled upon Igenex, who would test for a number of pathogens. I sent in samples and finally, some results can back that where more than YES/NO, they had a scale that was indicative of the Lyme pathogen. With this I finally went to see a young ID Dr and bingo, without even seeing the tests from Igenex or me even mentioning Lyme disease at all he started my on IV the same day... for advanced Lyme disease. If Igenex was not there this would never have happened.


Finally, does anyone know any details of the proposed article and who will be the references? If so, it would be very useful to know.

[This message has been edited by david1097 (edited 07 July 2005).]


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ellenluba
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Hi folks,
Some terrific letters here.

Remember that, although breathwork's post was fantastic, you don't have to match that degree of scientific knowledge in oder to write.

Certainly, those who are getting better from Lyme treatment that they got only because of Igenex, should really emphasize that point..

The fact that Lyme treatment is helping you is evidence that the test was correct.

The main goal of this writing campaign is to make sure that our voices find their way into the article.

All we are asking for is fairness.

If we get treated in a fair and unbiased way, we will be convincing.
If.

Anyway, it is really wonderful that the community bands together like this.

For those of you who live in the northeast, please check out the thread on the important public hearng in Massachusetts tomorrow.
Thanks
Ellen


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seibertneurolyme
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Sent my email. Can't wait to see what is actually published by the paper.

If it's not one thing it's another !!!!!

Bea Seibert


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Lyddie
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Ellen, I am deeply grateful for all yolru advocacy work and make calls and do e-mails whenever you ask.

But in this case I think you are all making a big mistake.

The reporter is no doubt capable of locating the Lyme Disease FDn. or Association and asking for referrals to people to interivew.

I mean, I'm not too tech. savvy and I mentioned to find these organizations.

Writing letters in advance is inappropriate and could be offensive. And, since, noone knows the content of the article and everyone is just guessing, some of these letters are way too long and too detailed and make Lyme patients look, well, kind of sketchy (been around my teenagers too much lately).


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DanP
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Here is the text of the email i just sent to Mr. Hurley.

Dear Mr. Hurley,

I understand you are preparing to write an article about Lyme Disease. I am a victim of this cruel and insidious disease. In July of 2004 I awoke one morning here in my apartment in NYC, and couldn't walk and was in unbearable pain. After months and months of tests, ranging from simple blood tests, to full-body MRI's, I finally got a positive Lyme test result from SUNY-Stony Brook's Lab that was later confirmed by Igenex in California. I cannot begin to describe adequately enough for you to understand what pain and suffering I went through from July of 2004 to December 31st 2004. The hundreds of tests, doctor's visits. How even more debilatating all of the hoops I had to jump through to get a valid diagnosis! Thank God I didn't agree to have the herniated disk operated on for that was the earliest diagnosis; I barely have any back pain today.

I had not been feeling well for many months before July of 2004, but kept getting negative Lyme results from Quest Diagnostics, 4 in all. My symptoms over the course of those months were very unspecific, ranging from a deep malaise to numbness in my limbs to night sweats to much disturbed sleep.

My NY doctor wasn't convinced that it was Lyme based on the SUNY Stony Brook result, suggesting it was all in my mind. (He has since closed his practice because of his own brain tumor! And I wondered why I wasn't getting adequate treatment! And he was aware of a past Lyme infection dating from 2001 when I developed a rash out on Fire Island where I had a summer home and the physician on call in the Pines treated me for Lyme.)

It was the total collapse in July of 2004 that sent me on a path that I hope to save fellow sufferers of this vile disease from.

Once Igenex confirmed the SUNY Stony Brook results, my doctors in Maine ( I had to go to Maine where my brother is a doctor because no doctors in NY that I could find were knowledgeable enough about Lyme to treat me) started me on a treatment regimen that has almost completely restored my good health. It is a disgrace that doctors in NY are uneducated about Lyme and its symptoms and treatment. It is a disgrace that NY doctors are persecuted by insurance companies when they diagnose and treat Lyme in their patients. It is even worse that the CDC has not been more active in fighting this plague. Lyme has affected many more victims than West Nile Virus but for some reason that malady has gotten much more attention and money!

Thank you for your time if you've read this missive in its entirety. As you can tell I am now a passionate partisan. And I have even more reason, as one of my sisters in Florida has just received a positive Lyme result from the lab her medical practice uses. It is not SUNY Stony Brook or Igenex. She is a nurse practitioner and has not been feeling well for a number of years. My experiences of the past year convinced her that she should get tested. And Voila! Maybe it was our many summers in Maine hiking and camping where we contracted this misunderstood disease.

------------------


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Lymerayja
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Excuse me. Igenex has not been under "scrutiny" for a long time. It has been under **pressure** from the CDC Lyme officers and the Steere camp, whom we **know** to be corrupt.

I don't know of any "legitimate questions" , as you allege, about the Igenex lab's practices or about freshness. The lab publishes clear guidelines re the shipping of its specimens. And shipping blood long-distance is not such an unusual practice. Certainly the Steere camp found no problem shipping California blood all the way back east to Steere's lab to ensure they got the desired (skewed) results they wanted for a study of west coast Lyme.


You complain that "so many of their results come back positive".What do you know about the percentage of Igenex results that come back positive? Do you have statistics on this? And if so, what is the source? Because if you don't have actual statistics from a bona fide source, you are analysing pure hearsay.

It is a favourite refrain of the Steere camp provocateurs that all results come back positive from Igenex. That's absolutely false.


You say you have never understood why the Igenex tests are considered so reliable. Well, let me ask you this. Which would you consider more reliable, a lab following CDC criteria, or Igenex, knowing that the CDC recommends that anyone with a negative Elisa have no further testing (even though this will miss 50-90% of Lyme patients), while Igenex is so adamant that Elisas are not sensitive enough to screen, that they will only do Elisas if ordered in conjunction with western blots?

Or, supposing you were fortunate enough to get a positive Elisa, which lab would you like to do your "confirmatory" western blot - Igenex, or a lab following CDC criteria? Knowing that CDC criteria demands five out of ten bands on the IgG blot, even though several of the bands concerned are **highly specific**, occurring in no other condition apart from borreliosis.

Why demand five, when even one, and certainly two, of these highly specific bands, combined with a clinical picture and history compatible with Lyme, and the exclusion of other diagnoses, can mean virtually nothing else?

Now let's suppose your serum reacted with the OspA and/or OspB bands on the blot. On Igenex, this would be recorded and taken into account in its evaluation, given as these two Osps are some of the most specific bands known (they were used as the basis for the Lyme vaccines).

The lab following CDC criteria, on the other hand, would **not even report** those bands, so you would never know if your blood contained antibodies to them or not.

Finally, should your doctor phone up a "CDC" lab for information, he will likely be told that seronegativity is virtually impossible in all but the very earliest stages of Lyme, and that IgM blots should not be done except in early Lyme. Which is garbage.

Igenex will tell your doctor the truth - that a new IgM response may occur in late Lyme, that the IgG response often declines in those who have been sick a year or more, and that a negative blot does not rule out Lyme, as many factors can cause false negatives in chronic (not just early) Lyme.
Igenex will tell you this latter fact, which they make very clear on their website, even though it is financially disadvantageous for them to tell you it. After all, what they are saying is that all immunoblots, including theirs, are limited in their value.


quote:
Originally posted by beachcomber:
[B]
I, for one, have never fully understood how/why the Igenix tests are considered so reliable. And, we need to put the bogus therapies and practices to bed. This article will be just the beginning of a long discussion about the accuracy of our testing methods & might help in the long run.

B]


I sincerely doubt it. Also, given that the proposed article using CDC dogma to trash Igenex would appear in the NY Times Health section dominated by Kenneth Altman, member of the CDC's Epidemic Intelligence Service (EIS) and a man whose close relationship with the CDC spans years, it's not very likely we will get an open, unbiased analysis of things - don't you think?

Lisa


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Lymerayja
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quote:
Originally posted by lou:
It looks to me like the OPMC and the Steerites have a direct line to the management at the Times... .]

Yes they do, Lou, he is called Altman and he's their medical correspondent.

Altman is a member of the CDC's Epidemic Intelligence Service, an elite unit of infectious diseases experts (so is Allen Steere).

Altman has extremely close ties to the CDC going back years (I have posted in another message with some of the details).

Altman was responisble for the infamous Stalking Steere article.


)

Lisa


[This message has been edited by Jenifer (edited 08 July 2005).]


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Lymerayja
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quote:
Originally posted by Martijn:
Many of these patient reports will be of little value. If a lab helps you getting a diagnosis with a positive testresult, then that doesn't imply that the lab uses good tests..]

Nonsense. When multitudes of patients report that they have suffered for years under a series of wrong diagnoses and accusations of hypochondria, and that some of the misdiagnosis problem hinged on the use of CDC criteria, and then, after receiving a positive Igenex their doctor finally treated them for Lyme, so that they became well or at least much better for the first time in years, then that certainly does say something about the accuracy of their testing methods.

Lisa


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Lymerayja
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quote:
Originally posted by Martijn:
...

In both cases the result correctly supports the diagnosis of Lyme, while properly speaking the tests were false positive. What I want to say is that it's all not as simple as some people think.


Yes, Martijn, those things are possible, but how **significant** do you think they are in the world of Lyme diagnosis?

Do you have knowledge of thousands of people being harmed by the type of "false positives" that you describe?

I will bet that if you could contact all those who have read or written to this forum, you would discover thousands of people who have been hurt by FALSE NEGATIVES, and in general, by the CDC approach to Lyme testing and by the misuse of its surveillance case definition, which relies on blood tests to make or break diagnosis in late Lyme.


Martijn you have written dozens, perhaps hundreds of posts attacking LLMDs,on more than one group, and insulting and libelling those like me who point out Steere camp fraud. I would like to know how many posts you have written underlining the HUGE suffering that is caused by the CDC/Steere camp approach?

Why is it, when you **yourself** have been denied treatment because of the Steere camp influence over European Lyme medicine, that you don't feel any passion to fight those who have made **you** suffer, but are filled with passion to support those who attack ILADS and Igenex, without whom you would probably not have the slightest idea what has caused your illness?

Lisa

[This message has been edited by Jenifer (edited 08 July 2005).]


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NP40
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IReallywant2believe, you singled out my letter to Hurley at the Times so I feel compelled to respond. You're certainly entitled to your opinion, and have every right to voice your disagreement.

Frankly, I don't care what Hurley or anyone else thinks about my letter. Hurley didn't have a 14 year old child bedridden, and writhing in pain for months on end. We had misdiagnosis's coming at us like snowflakes in a blizzard, from supposed experts, for months, while he continued to worsen, and deteriorate.

One month of reading lymenet and I realized that I knew more about lyme than 99.99999% of the doctor's in this country. If I could learn about it, why couldn't they ?

Like every other profession in this country, money rules the medical community as well. Patients are far down the food chain. It was perfectly acceptable for specialists of various ilks to let my son suffer, so they could make their misdiagnosis's to pad their own wallets. See, it wasn't their child suffering.

Yet, the doctor that finally treated and has brought my son's health back, has been harassed for years. He can prescribe long-term abx for acne treatment, but not for somebody wheelchair bound because of lyme. You know what ? He prescribes it anyhow. Why ? Simply put, when he took the Hippocratic oath, it meant more to him than providing a Mercedes Benz payment.

The AIDS movement finally received recognition, funding, research, and help. Why ? They came to the conclusion that they were dying anyhow, but before they went, they were going to make their voices heard.

That is exactly my contention of what the lyme community needs to do as well. We've tried to be cooperative, pass legislation, kowtow, and accept the abuse heaped upon us by the medical community, Steerites, CDC, NIH, and the media. It's gotten us little or no ground. It's time to start screaming from the rooftops !

Calling people like Dan Hurley out, for what they really are. Shills, for the corporate masters they serve. Why ? So they can make their Mercedes Benz payment.

It's time to shake the Dan Hurley's of the world out of their doldrums as they nest peacefully in their ivory towers.

After months of searching for answers for my son's condition, a beautiful lady, incapacitated and debilitated by lyme, active with a state support group,informed me of what ailment my son really had. She also referred us to the LLMD that ultimately has made him a normal teenage boy again.

She saved his life.

Today she's too ill to even respond to e-mails.I'm appreciative that I've gotten the chance to thank her.


Doctor's, who already have millions in their bank accounts, insurance companies who are worth billions, CDC and NIH doctor's with cushy retirements at taxpayers expense, and hack writers who masquerade as competent journalists, neither care,nor deserve any niceties I may hurl their way. Believe me, I'll swing a lot more vitriol before our mission of getting lyme patients proper treatment, and respect that every human being deserves, is through.

I'm saving my niceties for a beautiful, compassionate lady, that I've never met, who can no longer use her keyboard to respond to her e-mails.


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riversinger
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Thank you, NP, for refocusing this thread where it needs to be focused.

------------------
Sonoma County Lyme Support
[email protected]


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ellenluba
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NP40,
I have just been skimming this thread now , and your post is terrific. Really sums it up.

As I was skimming, there was one poster who raised a legitimate point that I want to address (sorry, I don't remember who posted it right now).

The Times does know how to find the LDA and ILADS. But, they haven't done it in the past. Except for one reporter years ago who has since retired, the Times has been in the stone age as far as Lyme goes.

So , as NP40 says, we have got to make noise,
Ellen


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ellenluba
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If you have already sent a letter to Dan Hurley, please send a copy to his editors. Here are their names and the fax number for all of them.

Also fax comments to (212) 556-7306 (NEW YORK TIMES SCIENCE SECTION FAX NUMBER) FAX NUMBER WHERE ALLSUPPORT LETTERS SHOULD BE SENT ADDRESS ALL THREE EDITORS BELOW. RE: "Dan Hurley article on Lyme Laboratories"

NEW YORK TIMES SUPERVISING EDITOR/SCIENCE SECTION:
LAURA CHANG

EDITOR:
DAVID CORCORAN

EDITOR:
RICK FLASK

Thanks,
Ellen


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Ireallywant2believe
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NP40, I didn't mean any disrespect to you and believe me, I feel your pain. I also feel your passion and your anger and I understand. I'm not saying those aren't justified.

But the stated goal here was to have a positive influence on the story. Or to kill the story.

I guarantee you that it won't positively influence the story to call the reporter and the paper names. That will only get their backs up. You won't win friends and influence people that way. You won't attract more flies with vinegar than honey.

I don't even think that people should be writing letters to the reporter. I think the stories about positive experiences should be posted and then forwarded to the reporter by ldf or lda to show another side.

That's assuming that the idea that there's a bad story coming out is even true. I don't know how anyone could know that other than the reporter and the editor. No journalist worth their salt reveals their angle on a story in advance. And you can't tell the angle by the questions asked. Questions could be for background info or to get a response.

I know a little about journalism and I guarantee you that reporters and editors would react negatively to any overt attempt to influence a story communicated that way. They don't like to be told how to report or what to report. And trying to kill a story will really backfire. Prior restraint is the worst thing to a journalist a real attack on the first amendment.

I know the first amendment isn't real popular around here on this board, but it is around the NY times. Judith Miller just went to jail to try to protect it and she writes for them.

I don't think this is your mistake. I think ellen and the lda are making a mistake here calling for letters to be sent to the reporter and definitely a letter like you wrote isn't going to help convince the reporter to write a more favorable story. If someone called you names how would you respond? But if you wrote a story here about how Igenex helped you and bad tests other places hurt you, and others did the same, it wouldn't be attacking the reporter who hasn't even written the story yet and it would be putting out a positive message that could be shown to the reporter. I think that is much more likely to work.

But you were doing what ellen and lda suggested and ellen seems to think your letter is great. I disagree with her.

But that doesn't mean I don't get it when it comes to what you're feeling. I do. I sympathize. I empathize. I've walked in those shoes too. Been there, done that. Still doing it.

But the guy hasn't even written the story and he's being bashed? That I don't get.

I know this whole situation stinks. But how is it Dan Hurley's fault? Or the NY times? I know they haven't written stories we like mostly but the blame for that lies more with ALDF and Yale and Allen Steere and Len Sigal and Eugene Shapiro and that whole crowd.

I really do feel your pain. I share it. Many of us have been through the same thing ourselves and with our families. I have. But venting at the reporter? I just don't think that is going to achieve the purposes stated by lda and ellen.

I hope that your child (son?) has improved with treatment? We see Dr J in Ct for our kids.

I wish you the best of luck with your family and yourself and really meant no offense to you and hope none was taken. Really I hope your child is better or at least on the road to better! I'll put you and your family in my prayers. Peace be with you.


quote:
Originally posted by NP40:
IReallywant2believe, you singled out my letter to Hurley at the Times so I feel compelled to respond. You're certainly entitled to your opinion, and have every right to voice your disagreement.

Frankly, I don't care what Hurley or anyone else thinks about my letter. Hurley didn't have a 14 year old child bedridden, and writhing in pain for months on end. We had misdiagnosis's coming at us like snowflakes in a blizzard, from supposed experts, for months, while he continued to worsen, and deteriorate.

One month of reading lymenet and I realized that I knew more about lyme than 99.99999% of the doctor's in this country. If I could learn about it, why couldn't they ?

Like every other profession in this country, money rules the medical community as well. Patients are far down the food chain. It was perfectly acceptable for specialists of various ilks to let my son suffer, so they could make their misdiagnosis's to pad their own wallets. See, it wasn't their child suffering.

Yet, the doctor that finally treated and has brought my son's health back, has been harassed for years. He can prescribe long-term abx for acne treatment, but not for somebody wheelchair bound because of lyme. You know what ? He prescribes it anyhow. Why ? Simply put, when he took the Hippocratic oath, it meant more to him than providing a Mercedes Benz payment.

The AIDS movement finally received recognition, funding, research, and help. Why ? They came to the conclusion that they were dying anyhow, but before they went, they were going to make their voices heard.

That is exactly my contention of what the lyme community needs to do as well. We've tried to be cooperative, pass legislation, kowtow, and accept the abuse heaped upon us by the medical community, Steerites, CDC, NIH, and the media. It's gotten us little or no ground. It's time to start screaming from the rooftops !

Calling people like Dan Hurley out, for what they really are. Shills, for the corporate masters they serve. Why ? So they can make their Mercedes Benz payment.

It's time to shake the Dan Hurley's of the world out of their doldrums as they nest peacefully in their ivory towers.

After months of searching for answers for my son's condition, a beautiful lady, incapacitated and debilitated by lyme, active with a state support group,informed me of what ailment my son really had. She also referred us to the LLMD that ultimately has made him a normal teenage boy again.

She saved his life.

Today she's too ill to even respond to e-mails.I'm appreciative that I've gotten the chance to thank her.


Doctor's, who already have millions in their bank accounts, insurance companies who are worth billions, CDC and NIH doctor's with cushy retirements at taxpayers expense, and hack writers who masquerade as competent journalists, neither care,nor deserve any niceties I may hurl their way. Believe me, I'll swing a lot more vitriol before our mission of getting lyme patients proper treatment, and respect that every human being deserves, is through.

I'm saving my niceties for a beautiful, compassionate lady, that I've never met, who can no longer use her keyboard to respond to her e-mails.



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foggedup
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This is a post from another person. I am so new at this I don't even know how to respond to this post. I guess the first thing I need to ask about are the "Myths" and this statement: "in the majority of cases 4-8 weeks of antibiotics, either IV or oral, are more than sufficient to rid the infection."

What the heck? I am so confused. From what I read on this board we can be on antibiotics for years.

If you can help me out with thoughts please do. I feel this is misinformimg a lot of people, especially me!
Thank you.
Foggedup

==========================================
I've done all the research that I need to do...I have thoroughly studied Lyme Disease, its treatments, its diagnosis, and its myths versus facts. When I refer to "oh so unique testing procedures" it DOES NOT refer to the Elisa/Western Blot tests per say...it refers to Igenex's methods of carrying out these tests. Why do their methods get so many positives when Lab Corp and others don't get the same results? Lab Corp is an extremely proficient lab and their procedures are top notch...why should I rely on Igenex for this when my insurance company would never cover it and most doctors have never even heard of them? No one can explain this which is why an investigation is necessary. I guarantee you that this will turn up some very interesting things...anyone opposed to this has obviously got something to hide. If the CDC can prove that there are an inordinate number of false positives coming out of Igenex, this will turn the Lyme Disease community on its ear!

You CANNOT place a Lyme Disease diagnosis in the same category as MS or Cancer. Lyme Disease myths have been spreading like wildfire and the reason for this is poor diagnostic techniques (testing for presence of antibodies and not the actual presence of infection), highly questionable symptomatology (ranging from arthritis to poor memory), and no proof of a cure (not current test available to prove Borrelia Burdorferi has been eliminated). So when a person with very vague symptoms shows a positive or negative Elisa/Western Blot (a lot of doctors won't even take these tests into consideration), the majority of Infectious Disease Doctors will make an attempt to distinguish which symptoms are most likely result from an ACTIVE infection and which do not. What a lot of these so-called "Lyme Literate" Doctors do is attempt to label almost EVERY symptom they encounter as a resultant of an active Lyme Disease infection when there is no scientific basis for doing so. Because of the myths surrounding Lyme Disease and the difficulty proving that the infection is even present, it is extremely easy for practioners to fool an unsuspecting victims.

The truth is, they will make questionable diagnoses and then prescribe antibiotics that are quite unnecessary and possibly harmful. When the patient returns month after month with continued symptoms, the doctor will say "Oh well, we gotta keep battling...gotta keep killing those spirochetes..." The fact is, the antibiotics are not doing ANYTHING to help these people and these physicians will keep patients on them for YEARS!!! This is terribly foolish and highly irresponsible. No one can argue with me that this all takes place on a daily basis in this country...quacks are EVERYWHERE! So many people have been swindled out of there life savings trying to pay the $10,000-$12,000 a month for IV Rocephin treatments when they never had Lyme Disease in the first place and its sad. Igenex, with their possibly high percentage of false positives, are only furthering this corruption.

I agree with the current accepted medical pratice guidelines that if Lyme Disease is suspected in a patient, even without a postive Elisa/Western Blot, in the majority of cases 4-8 weeks of antibiotics, either IV or oral, are more than sufficient to rid the infection. If a person is still sick from this point on, then their problems are not an ACTIVE Lyme Disease infection, but quite possibly Post-Lyme Syndrome, Fibromyalgia, or Chronic Fatigue Syndrome in which antibiotics are inadequate.

I am all for this investigation and I hope we finally get to the bottom of all this.
=========================================end

[This message has been edited by foggedup (edited 08 July 2005).]


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foggedup
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Double post sorry

[This message has been edited by foggedup (edited 08 July 2005).]


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david1097
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There are a number of interesting points brought up. On sruface they look more or less ok but the author has made definative statements about thisgs which he/she cannot possibly do. Lets look at a few of them.

Igenex.
All they do is a few tests, they use there own antigens which they selected for specific reasons. The molecular weights are not bogus so one has to assume that there is some credibility in the antigen probes. In fact they will even tell you where they get them from. The success of any antibody test is the antigens used. If the antigens are faulty then the test is faulty. Where do the otehr labs get the antigens from. Given the fact that the other places do so many other tests, I would suspect that they by the complete test kit from someone. Does it contain all of the possible Lyme variant antigens or jsut a few. I have heard of other tests for rather rare infectious diseses being tested for using kits that where "the lowest cost" but did not test for the domestic strains. The results where of course mainly negative. Has anyone asked the other labs what they use for WB reagents? This would be a very good question.

The other issue is WB interpretation. This is one area where there can be a lot of argueing. What you are argueing about is a darker line on a piece of film or paper that may have many possible shade of darkness. It is a qaulitative measurement. To settle the matter it wuld be very interesting for labs to swap the blots and see what the other comes up with. The results would be very interesting.


On the non specific nature of the symptoms, what is said is very true however they imply that every Dr that treats lyme is a crook. this is a pile of horse s___ maybe there are some bad apples but the ones I have seen are not multi millionaires. They basically want to help the people they are treating if takes agressive measuires then so be it. There are MANY MANY MANY infectious disease cases that are persistent and are NEVER cured despite antibiotic treatment. MAny of these are surgical wounds that NEVER heal. Just go into an outpatient wound clinic and I guarantee you will see many of the same people over and over again, They take ABX the wound start to heal, they stop and it gets worse. So much of 4 week of ABX cures averythig eh. These people have a hiole in there skin, you can't say that is a pysc problem (acutally some have said that).

Finally Post Lyme syndrome. Lets look at things in the correctg perspective. If I just had joint pain and had no other symotoms left over from lymne after treatment I would be the hapest guy around. The joints maybe got damaged and they will hurt from time to time in the future BIG DEAL.

On the otherhand, when you on a cyclical basis have to use a cane to walk, can't look at a checkerboard floor becasue you will pass out, you get vertigo just sitting there, your hearing gets fried so that you need two hearing aids, your face droops like a stroke victim, you can't feel one side of your body and you loose feeling in one half of your body AND all of this goes away when you go back on antibiotics, don't say that that is post lyme syndrome. EVEN THE CDC AND THE ALDF SAY THAT RELAPSE OCCURS IN SOME CASES. So the guys that say everyting after 4 weeks is post Lyme syndrome are not in touch with reality and I fell very sorry for the patients that they treat.

Enough with my monologe. Bottom line is if you read someting like the copied post ALWAYS get the otherside of the story. If not do so at your own risk.


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foggedup
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Hi David. Thank you so much.

I do have both sides of the story, but was taken back with this person.

I am just tired. I should end for today and stop "trying" to think. lol

Thank you for all your great info.
Foggedup


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pq
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From Taber's Cyclopedic Medical Dictionary:

1. ``Mark [As mearc] a spot on the surface of the body...'' (p. M-12)

2. Kleptein ``[Gr. To steal ]'' (p. C-80)


Thusly, and hence to follow is part etymologic, part syntactic, part semantic, and part metaphoric exegisial description of the lexical `variability', both of mearc kleptein, and kleptein mearc , documented in parallel, more or less in tandem with the temporal contiguity---the successive occurrence in time---of those borrelial events, and the recidivisitically criminal , ersatz ex cathedral degeneracy documenting such borrelially mearcy (non-)/events.

So, in the ``Taberatively'' cyclopedic derivative ``antigenic vein'' of Mark meaning `a spot on the surface of a/the body, and Kleptein , meaning `to steal,' ya'll read on:

To steal a mearc, or mearc to steal. That might be a question. Thusly, and hence to steal a spot(mark, duh mearc,) from the surface of a body. Furthermore, this would conjure more questions as in some of the following:

What body?

What, if any, spot ?

What if any spot kleptein?

What surface? Outer, or inner surface?

What, if any mearc kleptein?

The body of what? Borrelia? A study?

The body of, The New Anglais Mediccian Journey of Mendacity and Homicidality?

The Calcuttian style of Gutteratively Negligent-Genocidality?

A body of [borrelial]subjects?

If borrelia, was it mearc `A,' spot `B,' mearc `C,' or other mearcs, or murky inkblot spots.

If mearc kleptein then which if any, mearc kleptein?

Kleptien the mearc(spot) `A' or mearc `B' from the surface of the body, or do NOT include mearc `A,' and/or `B' blot-analysis?

Instead, travel East to `Teutonia', and return with ersatz American strain(s) that do NOT manufacture the two mearcs?

The blot begotten of spot `A' , mearc `B,' or spot `C', and, in turn, which was begotten of what, if any surface, of what, if any, body ?

The surface `cards' near the top or bottom of the borrelial `deck'?

Kleptein a mearc `A' may not be possible, because there may be no Os Mearc'A' kleptein; that is to say, kleptein mearc `A' from certain bodies of teutonic, tellurian origin(s) containing sanguinous or sero-sanguinous fluids,because Outer surface mearc `A' is known to be down-regulated, and Outer surface mearc `C' up-regulated within such bodies of susceptible tellurian entities of the biological realm as were infected?

Legitimate exceptions, if any, granted.

herr mearc kleptein steered aclivitously toward murky(= mearc[y] = spotty) tellurian blot [ches] that eventually would bespeak of non-sensical, teutonically allopathic, erszatz American borrelia?

If a Teutonic borrelial body doesn't conduce to the appearance of mearc `A' or mearc `B' on the blot , then how can one make a spot not appear on the blot?

Be it the spot(s) of the blut(uh, blot) or the blut (uh,blot) of a spot `A' or mearc `B' to steer , or steer mearc to a blot on which no mearc `A' or mearc `B' existed, exists, nor will thenceforth be spotted?

Mearc kleptein = mark to steal? See Taber's Cyclopedic Medical Dictionary.


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pq
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Singer Jim Morrison's metaphorical `proteomic' ode
from the 'other side'


Some killers on the roads
Their brains are squirming like those toads

The `eye-dee-es-ay' say
It surely is O.K.
To let our children play
In that killer hay.

A killer guide to ride
Along those lines that hide
Whence sweet memories arise
Klepto killers on the road....


In New England Journey's hay
Kleptein just might say
Avoid that pedi fray
And
Let your children play
In cytokinal hay

But if our children lay
In kaiso klepto's killer hay
Then will we surely say
There laid the childrens'
final play.

Don't let `eye-dee-es-ay' say
Its ok to play
With captain klepto's spiro-plague

Captain klepto plays
pontinal punctate ways
to have us always say
its ok to play
sweet woodruff in the hay

Killer lines thus guide
to the other side
w-h-e-r-e
sweet memories will have died.

Don't let our killer klepto play,
`A la chicken-pontine day'
Lest we be stricken, nay,
forever thusly plagued.

Cdc killers on the web
Their brains defaulted to be dregs

Cdc killers on the air
Their brains bolting like those hares.

Take a long holiday
From all that FD hay
Don't let your children play
In that deadly hay.

Gone noetic noir
By kaiso barber's abattoir

Killers on the road
Their brains are squirming like those toads



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beachcomber
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Lymearayla:

I understand your point of view. I was simply questioning why Igenix is considered the best. I also did not mean to impy that Igenix is bogus but, there are many practices that are and need to be addreessed - brought out in the open. A place like the Times may be helpful with that.

My point was that the Igenix testing needs to be explained. It is incomprehensible to me that the so-called best lab is not covered by most insurance. I want to know why. And, yes it has been under scrutiny, be it by the CDC or insurance companies - doesn't much matter who is questioning the credibility. It is just a fact.

That stats you asked for were posted by someone else in this thread. They are not a secret. Igenix publishes them as well.

I don't argue your point or concerns. What I do question is why we are asked to write a letter in response to an article that has not yet been printed. How do we know if this will be bad press? I think any press that Igenix gets will help to bring the whole Lyme discussion to the front. Good or bad press is needed to promote this discussion. It may help Igenix in the long run. It may help all of us. Free speech is vital to getting us closer to a cure.

Excuse my ignorance about Igenix. Thank you (all) for explaining why they are different. Too bad I don't have that kind of money and also fortunate that I did test positive with CDC, which by the way, only asked for 3 positive bands in my case.

Just wonder why we are trying to censor the press. Censorship is not what we are about. We need to read the article and respond appropriately. Dialogue is key.

Again, this is just my opinion.

No disrespect meant to you aor anyone else.

Bc


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bpeck
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Martinj:

Try finding out the reliability stastics on some of the tests (Like Lyme or Candida) from ANY other (diagnostic labs) at institutions - well like Mayo for example.

They won't publish their stats on specificity or the error margins. They also
won't reveal what their intensity criteria is (for determining whether a band on a Lyme western Blot is positive or negative).

It's really not un common for institutions NOT to publish these parameters.

It's more uncommon that Igenex is as open as they are about their testing.

And it's VERY commom for big institutions to have a blood contract with some particular lab, and therefore NOT accept results from labs they aren't familar with. That's big business, and has nothing to do with whether a lab has good testing practices or not.

What's going on with Igenex is political
IMO. From a scientific stand point, they're considered a reference lab and not a diagnotic lab. They doen't test to the very narrow Dearborn criteria (for Lyme) - and they reveal to Drs and patients the equivocal bands instead of calling them negative. Some high level Dr.s at prestigious institutions think this is misleading. I don't. I think it's more misleading to OMIT that data.

Barb

Martinj wrote:
Many of these patient reports will be of little value. If a lab helps you getting a diagnosis with a positive testresult, then that doesn't imply that the lab uses good tests
[This message has been edited by bpeck (edited 08 July 2005).]

[This message has been edited by bpeck (edited 08 July 2005).]


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Ireallywant2believe
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I think martijn has a good point. A lab telling you what you think is true and want to hear doesn't make it a good lab or a good test and doesn't make it right. That is the self fulfilling prophecy standard not a scientific measure of validity.

I used to really think Igenex was great. Mostly because I and people I knew got positive tests there and once we did our doctors felt more comfortable treating us, like now they had something to cover them for doing what they thought was right, so even though they thought for sure it was Lyme the llmds were nervous until a positive test came back. My first llmd told me he didn't really know what to make of the tests at all but felt he needed something to put in the file, something to hang his hat on so he'd be covered if ever questioned for treating me.

But the whole thing where the LUAT test was studied and said to be totally unreliable bothered me. I was really mad because that guy who did the nih chronic Lyme study did it and Igenex said they had sandbagged him and sabotaged the test.

But then Igenex never responded by publising a study in response, instead they said they ran out of a reagent they needed and now couldn't do the LUAT test anymore. Then suddenly they brought out a new test, which looks pretty much the same to me and said it had been in the works all along.

I have to admit I don't know what the difference is between the LUAT and the Lyme dot blot, but this sure seemed suspicious.

If Igenex test was sabatoged, why didn't Igenex ask for an investigation by the NIH? NIH has an office of research integrity. In fact that office found that one of the doctors on the NIH chronic Lyme study panel committed fraud in a Lyme study later on, his name was Justin Radolf. I think it was a Lyme study, but he definitely got sanctioned for committing science fraud.

Here's a link about it, scroll down it is near the bottom
http://72.14.207.104/search?q=cache:vQjSTwjYDGMJ ri.dhhs.gov/documents/newsletters/vol11_no3.pdf+justin+radolf+fraud&hl=en&ie=UTF-8

But the whole thing with Igenex was this really sounded to me like a dog ate my homework story. I felt really disappointed.

Igenex has had a lot of problems with regulators too. I don't know what that proves, because the regulators in New York State seem pretty biased, look at the OPMC hearings against Dr O and Dr B and the others who are supposedly targeted.

But after the LUAT thing I just don't know about trusting Igenex. The big problem for me is that I am not a microbiologist and I don't know enough to say whether a lab is good, whether they use proper techniques, I don't know the regulatory requirements, or what validation testing proves, I'm just not an expert and can't say whether a lab is good or a test is good.

Maybe people get lots of negative tests but really have Lyme because all Lyme testing is really unreliable?

All I know is that it doesn't hold much weight to use a self fulfilling prophecy standard to measure whether a lab is good or a test is good.

So I think martinj made some really good points.

My two cents, I'll send you the bill!


quote:
Originally posted by Martijn:
[QUOTE]Originally posted by ellenluba:
[b]We need to act NOW to stop this travesty. We need patients to immediately email or fax tomorrow to the NY Times and tell how Igenex has helped them with getting a diagnosis and thus treatment, and how it has positively affected their lives.


Many of these patient reports will be of little value. If a lab helps you getting a diagnosis with a positive testresult, then that doesn't imply that the lab uses good tests. Bowen seems to delivers even more often positive testresults, does this make Bowen even better? No, it doesn't.

Also, many patients are not aware of the significance of serological tests. Even if a testresult is positive, this alone does not imply that one has Lyme disease. So patients emailing or faxing their opinions might work the wrong way round.

It would be better if Igenex themselves would react, providing accurate details and scientific information about their testing procedure and explaining why their tests are accurate.

[This message has been edited by Martijn (edited 07 July 2005).][/B][/QUOTE]


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Ireallywant2believe
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Barb that's interesting. What is the difference between a reference lab and a diagnostic lab?

If Igenex is a reference lab not a diagnostic lab, by the names of those titles, should llmds being using the tests to diagnose?

Has Igenex published the validation studies independently validating their testing?

What was your take on the LUAT thing and the sudden withdrawal of the test and then the new test appearing?

Do you know the difference between the luat and the Lyme dot blot? Thanks.


quote:
Originally posted by bpeck:
Martinj:

Try finding out the reliability stastics on some of the tests (Like Lyme or Candida) from ANY other (diagnostic labs) at institutions - well like Mayo for example.

They won't publish their stats on specificity or the error margins. They also
won't reveal what their intensity criteria is (for determining whether a band on a Lyme western Blot is positive or negative).

It's really not un common for institutions NOT to publish these parameters.

It's more uncommon that Igenex is as open as they are about their testing.

And it's VERY commom for big institutions to have a blood contract with some particular lab, and therefore NOT accept results from labs they aren't familar with. That's big business, and has nothing to do with whether a lab has good testing practices or not.

What's going on with Igenex is political
IMO. From a scientific stand point, they're considered a reference lab and not a diagnotic lab. They doen't test to the very narrow Dearborn criteria (for Lyme) - and they reveal to Drs and patients the equivocal bands instead of calling them negative. Some high level Dr.s at prestigious institutions think this is misleading. I don't. I think it's more misleading to OMIT that data.

Barb

Martinj wrote:
Many of these patient reports will be of little value. If a lab helps you getting a diagnosis with a positive testresult, then that doesn't imply that the lab uses good tests
[This message has been edited by bpeck (edited 08 July 2005).]

[This message has been edited by bpeck (edited 08 July 2005).]



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Ann-OH
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Here is information about Igenex from their website: http://www.igenex.com/ I have split up the text a bit to make it easier reading.

[BTW, I too am concerned about the effect of sending letters to a reporter on the rumor that he is writing a story. It might boomerang back against the letter senders in the final story.] I totally support Igenex and find them very trustworthy.
Ann - OH
[from] http://www.igenex.com/
History

IGeneX, Inc. is a specialty immunology laboratory and research facility, providing personalized service to over 1,000 private practice physicians, hospitals, and other clinical reference laboratories throughout the U.S. and Canada.

The laboratory also functions as a pilot site for diagnostic manufacturers in the introduction of new assays, and has extensive collaborative agreements with multiple research groups.

The Reference Laboratory, founded in 1983, was purchased from 3M Diagnostic Systems (3MDS-Santa Clara, CA and BioWhittaker, Inc., Walkersville, MD) in 1991 by IGeneX, Inc. and moved to Palo Alto, California.

The laboratory is CLIA-certified, inspected by the Department of Health and Human Services for Medicare testing, and is also licensed in those states with special requirements (California, Florida, Maryland, New York, and Pennsylvania).

Personnel include MDs, PhDs, and California licensed and nationally certified clinical laboratory scientists (medical technologists); research, accounting, and marketing staffs; and client service specialists.

Directing the staff are Jyotsna S. Shah, PhD, CCLD, MBA and Boyd G. Stephens, MD; Clinical Consultant: Steven J. Harris, MD; and Nick S. Harris, PhD, AMBLI, President.

A letter from the President:
Our staff of professionals, who have worked together for many years, is committed to the following practices, ideals, and procedures:

State-of-the-art testing methodology;
Rapid turn-around-time -- in most cases 48 hours;

Dedication to personalized testing;
Willingness and availability to answer your diagnostic questions;

Ongoing refinement of existing tests; and,
Research and development for innovative quality tests to enhance your diagnostic tools.

Nick S. Harris, Ph.D., ABMLI
President, IGeneX, Inc.

Laboratory Certifications CLIA 05D0643914
Medicare ZZZ32759Z
CA State Dept of Health CLF4033
FL State Dept of Health 800002892
MD State Dept of Health 885
NY State Dept of Health 3172-805133A0
PA State Dept of Health 025659

Credits
The PCR is performed under a license from Roche Molecular Systems.

Procedures may change depending upon the availability of reagents from other manufacturers. IGeneX will notify customers when alternate methods are used.

Laboratory results should always be correlated to clinical findings.

IGeneX, Inc.
797 San Antonio Rd., Palo Alto, CA 94303 USA
Tel. 650.424.1191 / 800.832 3200 Fax. 650.424.1196
site:


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bg
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Ireallywant2believe,

Would you kindly edit your posts where you've quoted folks in bold? Thank you!

If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.

bettyg


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Ann-OH
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Here is some information I found on the Igenex website about payment. Hope it makes it clearer for those who think you can't submit Igenex bills to insurance companies.

Ann - OH

[From www.igenex.com]

Examples of Disclosures for Treatment, Payment and Health Operations

We will use your health information for Treatment. For Example: Your test results will be sent directly to your referring physician to determine your course of treatment.

We will use your health information for Payment.

For Example: A bill will be sent to you for submission to your insurance carrier. The information on the bill and accompanying information may include information that identifies you, as well as your diagnosis.

Communication with your Insurance Carrier may be necessary to expedite payment to you.

(From www.igenex.com}


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Tincup
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Has anyone ELSE actually written to help out IGexeX?

Or are we just wasting time here playing with the trolls?

You know.. time is wasting...

The trolls will be gone soon...

And without our help... IGeneX may not be around doing the wonderful job they are doing and furthering research.

Sooooooooo..

In the meantime.. can we show our support for one of the FEW organizations who have dedicated their lives to help folks with Lyme?

Thanks!

------------------
If you get the choice to sit it out or dance...



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riversinger
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TC, on the two local support groups I am on in CA, we are getting quite a bit of response on this. Of course, Igenex is in our backyard, so we feel extra protective!

I hope that folks from other areas are writing as well, since the paper is in New York. They might want to hear from someone besides us laid back hippies out here.

Its really very simple. Just tell them we NEED the good labs to stay operational. If Igenex helped you, let them know! You don't have to understand all the science, but if you do, all the better.

Just make some noise. Take the example from some noisemakers around here, and turn the energy around in the direction we want it to go!!!!!

------------------
Sonoma County Lyme Support
[email protected]


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treepatrol
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quote:
Originally posted by Charles05:
How does one get inside scoops on what stories the TIMES is going to run?

I am curious how the LDA gets the info on this story before it is written?


Wouldnt you like to Know???


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lou
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How can you tell which are trolls and which are just longwinded naive people?

Yes, I sent some info on the problems with lyme testing, in the hopes of demonstrating that the emphasis on one lab was misplaced. The response showed me that the outcome is predetermined and we will get just another hatchet job. Sorry, folks, keep sending your messages, but it doesn't look good to me at this point.

You people who sincerely believe that press on this subject might actually help us....please come back next week and comment after this story is printed.

Anyone who actually tried to find out the story on why the LUAT was dammed by Klempner could have easily learned that the samples were mishandled. It seems to me that some people here are bending over backwards to believe Steerites, when they do not offer the same opportunities to the people on the other side of the controversy. Guess it is easier to be on the side with all the power and money.

[This message has been edited by lou (edited 08 July 2005).]


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Tincup
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River.. good for you and others who are trying to help. You hippie you!

Lou.. You said..

"You people who sincerely believe that press on this subject might actually help us....please come back next week and comment after this story is printed."

I am not responding to you directly here. I am trying to use your reply to address the topic in general for others. You have already replied and helped.. as you always do. So... thanks for posing the idea here for me to address.

To those who want to know if your efforts will help...

To be honest.. I have NO clue.

Who knows what would help control the idiots and stop them from making a living destroying our lives like they have been for years... other than a 45 between the eyes. And since we all know that is illegal.. what else is there?

And no.. I don't always feel ANY old action should be done just to do SOMETHING. Not at all. Actions should be thought out, planned, and done with the best behind the scenes info in mind.. and to the best of our ability.

Will they always work? No. Of course not. It would be silly to think they would.

We are in a battle... or a war actually... with this being ONE of the battles. It is one we NEED to win to help save lives. The outcome here is important.. not just for IGexeX.. but for the entire process.

We are fighting many people who have no sense of pride, no dignity, no respect, no truth and fairness in their vocabulary, and no other thing in mind than their ownselves and/or money.

But.. we have been asked to help out with this situation by well respected folks, all volunteers who are TOTALLY dedicated to us and to finding us help... and those who have a MUCH better idea of what is going on behind the scenes than you or I ever will. This is their lives.. their whole lives.

And they have years of experience working on this stuff.. and an excellent track record to boot.

Sooooooooooooo...

Yes.. I can sit here all day and second guess them.. and in the early years I did.. but when I did.. in the end.. they were usually right... and my energy was wasted.

I have come to trust them after many experiences with them and I know their hearts. I have spent time with them personally (tto much if you ask them- HA) and I know their intentions.. which have always been honorable and ALWAYS with OUR best interests in mind.

Until someone can prove this will hurt the situation.. or until the nay-sayers (many just trolls) come up with a better plan instead of just cutting these posts to pieces for fun.. we should do what we can to help.

I would not feel right sitting around debating the topic at this point without offering a better solution... and while our efforts MIGHT actually make a positive difference.

They already plan to do this article. So IF.. and that is a big IF.. we can make a difference.. let's, at the least, TRY.

To sit back and do nothing is where the shame lies. To not act and let bad things happen to others without lifting a finger makes a person as guilty as the ones actually intending the harm.

Of course that is MY opinion.


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riversinger
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Lou, what kind of a response did you get? Nobody I know has gotten any kind of reaction to their letters.

------------------
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Ireallywant2believe
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Lou I know that Igenex said that the samples were deliberatley mishandled. But why wouldn't they a) submit a written response to the journal where that was published and b) request an ethics investigation from NIH Office of research integrity?

One would expect that to happen. And if proven it could have knocked that klempner study right out of the ballpark so it would have benefitted Igenex and the Lyme community.

Why didn't igenex defend themselves? Just doesn't make sense and it sure looked suspicious. I was disappointed because I really used to believe in them. I've seen the lab director speak and he seemed really credible and on the up and up to me.

So I don't know who or what to believe anymore.

If you were talking about me? I sure wish I was on the side of money and power because then I'd have some instead of none.

But I'm not on any side except good care for all of us and good health.

I said I think this whole battle is a mistake about positive tests it should be about clinical diagnosis fuggedabout the tests they all stink.

I think it is a mistake to write to this reporter bashing him for a negative story that hasn't been written yet. Ho does anyone know what emphasis or angle a story will take? I'm not asking anyone to reveal a secret source. But I know a little about journalism and I sincerely doubt the informatin is accurate but I do think that some of the letters being sent are not going to help. More likely to produce a backlash and if the story was going to be positive, I doubt it will be now. If it was going to be negative, I think it will still be negative so I agree with you there.

I've seen a lot of stuff here about being divisive. Don't you think calling people who have any different opinion steerites or trolls is at least a little bit divisive? How do you know who's on the side of the angels here?

quote:
Originally posted by lou:
How can you tell which are trolls and which are just longwinded naive people?

Yes, I sent some info on the problems with lyme testing, in the hopes of demonstrating that the emphasis on one lab was misplaced. The response showed me that the outcome is predetermined and we will get just another hatchet job. Sorry, folks, keep sending your messages, but it doesn't look good to me at this point.

You people who sincerely believe that press on this subject might actually help us....please come back next week and comment after this story is printed.

Anyone who actually tried to find out the story on why the LUAT was dammed by Klempner could have easily learned that the samples were mishandled. It seems to me that some people here are bending over backwards to believe Steerites, when they do not offer the same opportunities to the people on the other side of the controversy. Guess it is easier to be on the side with all the power and money.

[This message has been edited by lou (edited 08 July 2005).]



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FightFireWithWater
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I'm having a hard time understanding why there is a question as to whether sending letters before an article appears is appropriate.

It seems to me that we should assume that any reporter would at least like to create the appearance of writing a responsible article. How can he do that without hearing in depth from all sides before writing his article? Patients presenting the reporter with their stories are helping him do his homework.

In any case, the number of people who read follow-up letters are miniscule compared to those who see the article, and particularly the headline.

In fact, in my opinion, the worst damage to the public has been from NY Times headlines- which are not always supported by a close reading of the text. A prime example was their headline a few years ago stating that Lyme was hard to catch and easy to treat.

Especially when the news is reassuring, many people skip the article, but they remember the conclusion as presented in the headline. I shutter to think how many people were lulled into thinking they didn't really need to be careful outside from the headline I mentioned, and as a result ended up with Lyme disease. Even then they may have been slow to seek treatment because of the assertion that Lyme is no big deal. We humans love to hope for the best, especially if a more judicious approach would inconvenience us.


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NP40
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When's the last time you saw the following headlines in the NY Times ?

"AIDS LAB OVERDIAGNOSIS"
or
"AIDS, HARD TO CATCH, EASY TO TREAT"
or
"30 DAYS OF AIDS COCKTAIL CURES, AIDS SYMDROME AFTER THAT"
or
TOO MANY AIDS DIAGNOSIS HANDED OUT, REALLY HYPOCHONDRIACS"

The defense rests.


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Jenifer
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This was moved to General Support...

Jenifer
LymeNet Webmaster


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