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

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Author Topic: URGENT from Pat Smith -Igenex under attack
ellenluba
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PLEASE DISSEMINATE:

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

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


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HEATHERKISS
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This is the letter I emailed

Attn: Mr Dan Hurley,

I've been sick with alot of different ailments over the past seven years. Finally after going from Doctor to Doctor to Doctor I met a lady who's entire family had Lyme. She asked about my ailments and mentioned that it sounded like Lyme Disease.

Let's just cut to the chase. I have had at least half a dozen tests for Lyme. Labcorp. Quest. Southern. These labs are inferior at detecting Lyme Disease.

Finally after developing Nuerolyme I was diagnosed by a Lyme Literate Neurologist. He used Igenex and another lab that is far superior at detecting tick born diseases.

It took seven years because of inferior labs that the insurance companies use because they are cheap.

Don't trash Igenex. You could be potentially hurting generations and generations of sick people.

I'm doing much much better now that I've been on antibiotics since January of this year. I used to be pretty housebound and completely and utterly fatigued. Now I've been working more regularly and even worked four days last week. This is a miracle for me.

Please do more research....... Find out the truth. Do the right thing.

Heather in NJ


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robi
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I emailed .... thanks for the heads up.

robi


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Kimmi_K_75
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Okay, here's mine. is it okay?


Dear Mr. Hurley,


I am a Lyme Disease Patient from Pennsylvania. I was recently diagnosed when a test that was performed at IGENEX came back positive.

Prior to that, I had been diagnosed with numerous other ailments, Including Multiple Sclerosis, when a Lyme titer was performed at Quest labs came back negative.

Due to the length of time that had passed between my taking ill, and getting properly diagnosed I was fired from my job which was the sole support for my family.

Please, do not do the story you are prepared to do. Labs such as IGENEX are the only hope that we have in beginning the fight to get our lives back.

Think of the others who are ill, some being treated for MS. Not to mention those who are given an ALS diagnosis and told they will die in six months.

Without labs like IGENEX, people like me would be getting injections several times a day with medication they don't need, wondering why they aren't improving and quite possibly doing themselves more harm, never knowing the truth because of the cheap unreliable tests they are told are accurate.
If you'd like a story, why not a story on these tests that give false negatives and how something like that could be going on in America today.

Please, I ask you to look a little deeper, at the whole picture. There are thousands of people, in my state alone who need you to do the right thing.


Sincerely,
Kimberly

edited to space out for easy reading.

[This message has been edited by Kimmi_K_75 (edited 06 July 2005).]


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DJP
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Emailed and faxed...

Mr. Dan Hurley,

Please take the time to research Western Blot testing before writing your story that may negatively portray Igenex.

Both my 2 1/2 year old daughter and I tested positive through Igenex and are being treated for Lyme.

It is so hard to get diagnosed and receive proper treatment and an article criticizing Igenex would only make it more difficult for those suffering with Lyme disease to get diagnosed and treated. It is my understanding that the CDC's criteria was developed for surveillance purposes only, not for diagnostic purposed.

Through this process, I've learned that there are nine Borrelia burgdorferi (Lyme) specific Western Blot antibodies and Igenex tests for all nine on both the IgG and IgM. Quest, the lab used in our area, only tests for 2 Lyme specific bands on the IgM and 5 Lyme specific bands on the IgG.

Again, I beg you to review the facts before writing a column that could negatively impact the Lyme community and those who may have the misfortune of joining us.

I've attached an explanation of the Western Blot test to help you understand the complex issue.

Thank you

(attached Dr. J's explanation of the WB)


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ellenluba
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Great letters. You guys are terrific.

I need to add a PS that Pat Smith sent out so we could contact all appropriate editors in addiion to the author.
___________

The 973 744 5024 fax number in the first email I sent is the NY Times reporter's fax (Dan Hurley).

Also fax comments to (212) 556-7306 (NEW YORK TIMES SCIENCE SECTION FAX NUMBER) FAX NUMBER WHERE ALL SUPPORT 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 CORKER

EDITOR:
RICK FLASK

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


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Tincup
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WOW! The letters are VERY good!!!!

You guys are the BEST!

It is also VERY good to see newer members jump on this too!

I am sending stuff.. like this below.. but I like YOUR letters MUCH better!!

Lab Tests Fail to Identify Strains of Lyme Disease

Lucy Barnes

Recently, DNA evidence of a strain of spirochete, similar to the one that causes Lyme disease, has been detected in lone star ticks found in Harford County, Maryland, according to the US Army Center for Health Promotion and Preventive Medicine. The bad news is, the standard test for Lyme disease has failed to detect the presence of this newly identified strain in humans. Patients who were told they didn't have a tick borne disease based on negative blood work may actually be infected with this newly identified strain of Lyme disease.

The spirochetes responsible for causing Master's Disease, or S-T-A-R-I (Southern Tick Associated Rash Illness), have now been visualized using dark field microscopy, at the University of Georgia. "Having a culture isolate will allow development of diagnostic assays," researchers report as they search for more accurate lab tests.

The CDC reports a lone star tick and skin biopsy from a patient with a Lyme rash tested positive for the STARI strain. Standard Lyme disease tests were not able to detect the presence of infection in this patient.

STARI has also been detected in the blood of white tail deer, in Sika deer skin, and in ticks removed from wild raccoons. Research in this area is ongoing, however, locating funding for these studies has been a problem.

The transmission of STARI to humans by the lone star ticks may be considered a significant risk due to the fact these ticks are abundant, very aggressive, and victims often receive multiple bites.

Lone star ticks (Amblyomma americanum) normally range from Texas to Oklahoma, eastward toward Florida, north and east throughout Maryland, and northward into the states along the Atlantic coastline. They are carried to new locations by various species of wildlife and have recently been discovered in Canada on migrating birds.

Ticks in Maryland may also harbor other infections such as Babesiosis, Tularemia, Ehrlichiosis, Rocky Mountain Spotted Fever, Bartonelliosis, and Mycoplasmas, which can cause mild to life threatening illnesses.

STARI, Borrelia lonestari, causes a clinical illness in humans nearly identical to the one caused by the more well described Lyme disease strain, Borrelia burgdorferi. A rash similar to the one that appears in approximately half of those with the other strain of Lyme, fatigue, fever, muscle aches, and joint pains may also be apparent days to weeks after the bite of the lone star tick.

Many with Lyme disease (Borrelia burgdorferi) have progressed to the more advanced stages if they were originally misdiagnosed or under treated. Lyme disease can mimic symptoms found in patients diagnosed with Parkinson's, Alzheimers, MS, Lou Gehrigs (ALS), depression, Scleroderma, Lupus, chronic fatigue syndrome, Fibromyalgia, panic attacks, or other disorders.

The International Lyme and Associated Disease Society (ILADS) reported in the past that up to 90 percent of the population with Lyme disease who were tested by the current methods, may have been missed. Fluctuating symptoms, returning symptoms, and/or late stage neurological, arthritic, or psychological symptoms should trigger an alert that Lyme disease and/or other tick borne co-infections may be the underlying cause of illness in those who may have knowingly or unknowingly been exposed to ticks.

Lyme disease cases are on the rise. The CDC has determined that for every reported case of Lyme disease in Maryland, 7-12 are being missed. The Maryland Department of Health and Mental Hygiene admits, "underreporting could be occurring". They shift the blame for the inaccurate figures to others by suggesting when filing a required report form, "a busy office might overlook [it]or not find time to complete" the necessary paper work.

Although no official treatment protocol has yet been standardized for STARI, antibiotics normally prescribed for acute or chronic Lyme disease have been provided for patients suspected of having this strain, and the patients have improved.

IGeneX Lab in Palo Alto, CA developed Lyme tests which have been accurate in detecting the presence of chronic infection and exposures to tick borne diseases in humans when other labs have failed. According to a recent poll of Lyme patients, IGeneX has surpassed all other labs in their ability to detect exposure to Lyme disease. This has resulted in proper diagnosis, treatment and improvement in patients health.

`````````````````````````````````````````````````````````````````````````````````````````````````````````````

Results of blood tests for evidence of exposure to Lyme disease

June 2004

72 samples were sent to labs from Lyme disease patients in 9 different states (CA to IN to NY to FL).

44 samples were sent to IGeneX, MDL, or Bowen Lab.

39 were accurate and indicated positive results- 5 were false negative.

28 samples were sent to Stoney Brook, Quest, or Labcorp.

8 were accurate and indicated positive results- 20 were false negative.

Individual lab results-

In patients with confirmed cases of Lyme disease and/or tick borne coinfections:

IGeneX- More than 85 percent of the samples tested were positive

MDL- Approximately 65 percent of the samples tested were positive

Stoney Brook- Approximately 30 percent of the samples tested were positive

Labcorp- Only 25 percent of the samples tested were positive

Quest- Only 20 percent of the samples tested were positive

*ALL patients were treated with antibiotics for Lyme disease and improved with treatment.*


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



Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
ICEiam
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I mind well, I sent my story to him too!!

------------------
ICEY

IDAHO LYME SUPPORT GROUP
[email protected]


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NP40
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Dear Mr. Hurley,

It has come to my attention that you intend to publish a "slam" article against Igenex lab. Igenex is the foremost lab in the nation when it comes to detecting lyme disease. No doubt, their expertise has saved countless lives.

The CDC states on their website that most lab testing is totally inadequate for detecting lyme, and should not be solely relied upon when treating those suffering from lyme. Igenex is the exception to this rule.

If you really want to investigate corruption behind lyme treatment, why not ask insurance companies why they refuse to pay for anti-biotic treatment that extends past 30 days ? Tens of thousands have been cured of lyme with long-term anti-biotic treatment, this is unchallenged, and completely documented. Yet, insurance companies, and their lackey's at the CDC continue to perpetuate the 30 day myth.

Extremely ill people are trying to get help. That's it, nothing more. Why does the NY Times continue to harass and ridicule people who are defenseless because of a debilitating illness ? Slamming Igenex will doom another generation of lyme sufferers to live lives of misery.

I have no doubt Igenex's attorney's are waiting with great anticipation for your piece.

Once upon a time the NY Times served the public good, profiled corruption in high places. Sadly, you've become little more than the mouthpiece of the power and money you purport to protect the public from.

If you devoted half the energy you devote to crucifying extremely ill people, and applied it to uncovering the real corruption behind lyme disease, multitudes of American's could lead normal lives. I have no illusions that you'll be swayed by the truth, however, lyme is endemic in NY state, and I sincerely hope you never need to rely on a competent lab.

Sincerely,

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pq
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If any of us have videotaped your own, and/or children's seizures, and other behavior,signs and symptoms, before and after each of the lab results,from each or some of the labs,including Igenex, then ask Dan if he should like to see them.


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Lymerayja
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The NY Times has been publishing biased material in favour of the Steere camp for a long, long time, and some of it undoubtedly is to do with the fact that medical correspondent Lawrence K Altman is a member of the CDC's Epidemic Intellignce Service.

I support Pat Smith's call for people to write to the NYTimes journalist, but how about we write to other media too regarding this HUGE conflict of interest at NY Times?

This letter below mentions that the Washington Post has covered the story of Altman and the NY Times Health desk booting out a reporter because he was a member of the gay rights group Act-Up, when in fact Altman's membership of the EIS and longstanding connections with the CDC mean he cannot possibly cover them objectively.

Lisa

Jay Blotcher
A sporadic compendium of thoughts and visual collage pieces from the fevered mind of Jay Blotcher, Citizen of the World.
March 01, 2004
Michael Petrelis letter to the NY Times ombudsman
Mr. Daniel Okrent
Public Editor
The New York Times
New York, NY
Email: [email protected]


Dear Mr. Okrent:

As you must know by now, a controversy has arisen over The New York Times' decision to fire freelancer Jay Blotcher, who covered the Hudson Valley for the paper.

The Washington Post's widely respected media critic, Howard Kurtz, reported in his February 23 column that the Times pushed Blotcher out of a job because of his past affiliation with the AIDS protest group ACT UP. [1]

Following on the heels of the Post's column was an opinion piece in Gay City News on February 26, which pointed out that Lawrence K. Altman, medical correspondent for the Times, ``is a former employee of the federal Centers for Disease Control and Prevention (CDC) and he regularly reports on that agency. Altman also sits on an advisory board that administers a CDC fellowship program. In other words, his relationship with the CDC continues. That would be an actual conflict of interest.'' [2]

Gay playwright and AIDS community leader Larry Kramer, in a February 29 letter to Arthur Sulzberger, Jr., protested to the publisher about the paper's ``ridiculous dismissal'' of Blotcher. Kramer also raised the matter of Altman's inherent conflict of interest in covering the federal health agency. [3]

Here are a few details about Altman's past and current relationships with the CDC, which you may not be aware of.

He graduated from the CDC's Epidemic Intelligence Service, class of '63, and then served as an EIS investigator for the agency.

In 2001 he recounted in an article for the Times, on the occasion of the 50th anniversary of the founding of the EIS, of his time in 1963 investigating, as an EIS officer, an outbreak of botulism in Tennessee. [4]

Altman also served as editor of the CDC's Morbidity and Mortality Weekly Report for three years in the 1960s. [5]

After leaving the CDC, he eventually became chief of the U.S. Public Health Service's Division of Epidemiology and Immunization in Washington. [6]

Altman has for several years has also served as an advisor to the National Foundation for the CDC, a nonprofit advocacy organization created by Congress in 1992 that began operating in 1995 with a $500,000 grant from the federal government. The foundation receives $500,000 annually from Congress to carry out its mission, while the bulk of its operating budget comes from public and corporate donations. [7]

The 2001 annual report for the foundation reveals Altman made a donation to the organization, though the amount was not disclosed in the report. [8]

Currently, Altman is on the CDC foundation's journalism fellowship advisory board. He receives no compensation from this foundation. His colleagues include representatives from ABC News, CNN and the Los Angeles Times. [9]

Not only that, Altman presently sits on the board of directors of the Josiah Macy, Jr. Foundation of New York, a philanthropic health care and education charity that owns substantial shares of stock in pharmaceutical and medical technology firms, such as Abbott Laboratories, Bristol-Myers Squibb, Merck, Pfizer and Schering Plough. [10]

According to the IRS 990 return for the Macy Foundation, part of Altman's contact information is the Times' address and his direct phone number at the paper. [11]

By the way, the foundation reports more than $140 million in assets in the IRS return.

After reading this IRS return, I phoned the foundation and was told that Altman has been a member of the board since 1985.

Additionally, he is a longstanding clinical professor at New York University's Medical Center's School of Medicine, and his contact information in this capacity lists the Times as the place where students and teaching colleagues can reach him. He joined the NYU staff in 1970. [12, 13]

Why is it Altman is allowed by the Times to have past and current associations with federal health agencies, serve as a professor at a major university, sit on the board of a nonprofit organization, and the paper does not view any of this as a conflict of interest?

While at the same time, Blotcher's prior connection to ACT UP is reason for dismissal?

(Full disclosure: I am a friend of Blotcher's and have been since we met at an ACT UP meeting in 1987.)

I would appreciate a prompt reply.

Sincerely,
Michael Petrelis


Sources:

1. http://www.washingtonpost.com/wp-dyn/articles/A63872-2004Feb23.html
2. http://www.gaycitynews.com/gcn_309/expediencydressed.html
3. http://www.mpetrelis.blogspot.com/
4. http://www.epimonitor.net/EpiMonday/PreviousIssues/01-04-23.htm
5. http://www.uiowa.edu/~ournews/2000/march/0323med_reporter.html
6. http://www.molbio.princeton.edu/courses/mb427/1999/bios/altman_sketch.html
7. http://documents.guidestar.org/2002/582/106/2002-582106707-1-9.pdf
8. http://www.cdcfoundation.org/pdfs/annualreport_2001.pdf, P. 16
9. http://www.cdcfoundation.org/fellowships/knight_leadership.html
10. http://www.josiahmacyfoundation.org/board.html
11. http://documents.guidestar.org/2002/135/596/2002-135596895-1-F.pdf
12. http://www.outreach.psu.edu/C&I/HealthReporting/default.asp?WhichPage=agenda
13. http://www.med.nyu.edu/clinicians/altmal01.html

Filed under: Musings from a Cluttered Mind: The Blotcher Blog , The Ongoing Debate of My NY Times Dismissal

Comments
All Contents Copyright Jay Blotcher.


quote:
Originally posted by ellenluba:
PLEASE DISSEMINATE:

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.



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Lymerayja
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Igenex will have every right to sue you for that remark alone, "Charles", because you never received any bill from them, nor was ever a patient of theirs. SNet will gladly provide your name to enquiring lawyers, and the Lyme communtity can have a media party of its own with it.

Right?

You Steere camp vermin.

Lisa

quote:
Originally posted by Charles05:
Igenex never helped me.. I just got a big bill and "we don't take insurance" in the mail.

Bravo about time someone speaks out on them.



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pmerv
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If a lab or doctor "doesn't bill insurance," what that means is you have to do the paperwork yourself. I have several providers that don't bill insurance, however the insurance will pay if I send in the paperwork.
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breathwork
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OK, here's my version....


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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Linda LD
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I begged in my letter.

L


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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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breathwork
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Charles.....You can blame your plight in part on me...
My ex husband worked for Anthem BC in medical review in VA. Their experiences in having to pay for my care were held up as a case for review in oversight in hopes of reducing coverage for such expensive treatment.

The Anthem PPO program was created after this time period, with further restrictions directed against lyme. Lyme wasn't the only consideration in Anthem's policies, but it was a piece of it. They also looked at California and other more restrictive state programs to learn how to pay less for the rapidly expanding lyme population.

I was on nine months of IV Rocephin five years ago...they picked up every penny, as well as the Igenex testing.

In short, I cost them a bundle just on that round of drugs.

After my IV therapy ended, they reviewed their policies on lyme and treatment. Clearly, they don't want to pay that much again when they can find a way to deny coverage.

At that time lyme was an little known entity in Virginia to Blue Cross, Well, my treatment put them in the know. They won't pay for nine months of IV ever again.

They also reviewed the costs of testing. It has been BC/BS of VA's policy for a long time to deny certain types of claims several times, sometimes until the patient demanded medical review. At that point it was a black mark on the customer service person's record if they could not resolve an issue without bumping it up. Give this a try on the testing bills and see if it gets paid. I've used this tactic repeatedly, not always successfully, but it has worked more than not.

In the years following my treatment more damaging articles against long term IV have been published. They now have articles to support their policies of denial of coverage for IV, and have expanded their policies across the board when it comes to lyme.

They saw the writing on the wall with an growing infectious threat.

So, I'm sorry if my ability to work the PPO system with BC in some small way has led to more restrictive policies....

Let's not forget that it's my EX who worked for them....We are not pals....


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lymelighter2
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Hey guys, here is a copy of the email I sent today!

Dear Dan,

I just wanted to drop you a note before you take the time to disseminate yet more disinformation about testing laboratories who you and/or others may try to tout as being "unreliable" or "disreputable". I would ask first what is your agenda? Second, I would like to point out that the approximately 20,000 new cases of lyme disease that are actually reported each year are actual people, not lemmings. We have rights, we have brains and we can yes, actually get ill with diseases that the medical community, government and other bodies, (for whatever reason their agendas are driving them to have), refuse to acknowledge.

I would like to point out that it has taken 13, read it, THIRTEEN long years before ANY lab could find the proof that I had neurological lyme disease, despite my clinical symptoms over that entire time period.

Many testing laboratories in the U.S. have screened my blood for anything from heavy metals to many different diseases. None of them found that I had been exposed to lyme disease. Over a hundred doctors, the Mayo clinic in MN, and emergency rooms all over Wisconsin ignored my symptom history and failed to diagnose my lyme disease, despite my clinical symptoms with ALL the key manifestations of lyme (rashes, facial palsy, joint involvement, flu symptoms, encephalopathy, lyme lesions on the brain, MS symptoms, etc. etc.)

As a result, I am now 43, on disabililty, have lost one home already, physical placement of my children, and 2 separate jobs because of my illness, and have had to fight all this time just to get SOMEONE to test me properly for lyme and be willing to treat it as well. I have lost count of the numbers of physicians who believe chronic lyme does not exist, that 30 days of antibiotics is enough to treat lyme (guess what, its not), and I cannot tell you also the amount of misinformation these supposed medically literate doctors give out to their patients. When they cannot find out what is wrong with their patients, they use the current band-aid philosophy of telling the patient it is all in their head and here, have some antidepressants.

I am happy to report that in December of 2004, the superior testing laboratory at IGeneX labs was able to definitely prove to me and my doctors that I indeed have lyme disease and coinfections. Sadly for me, it took 13 years before I could get the right kind of treatment. It has been hell living this ill for this amount of time and it has devastated every facet of my personal life, not to mention our finances.

Since that time, I have begun iv antibiotics, supplements and other treatments and for the first time in my life, I have the beginning of resolution to some of my symptoms. I know, and so do many other lyme patients that it is an uphill battle for diagnosis, adequate treatment and recovery. The suicide rate amongst lyme patients is alarming and tragic, but given the circumstances in which we have to constantly battle for someone on our side, it is not surprising.

You must do your research properly before you slam one of the best labs in this country. Just because there are a number of physicians, clinics and governmentally-run bodies who refuse to admit that lyme is an epidemic, does not mean that the patients in this country are not sick. Remember, Columbus knew that the world was not flat. Lyme is a new territory and it is people in your position who have the power to help explore this territory properly, or to help keep the needless suffering manifesting in the current manner in which it is.

I urge you to INVESTIGATE THE LYME TESTING PROTOCOLS PROPERLY and not rely on some sources, like the CDC or someone with faulty studies or paid opinions. It is exactly this kind of prejudice that has made it nearly impossible for patients like myself to obtain a diagnosis and the treatment we deserve, until years after our illness could have been properly treated, or worse yet, at all. This is costing the communities and the government billions of dollars in unnecessary health care and disability costs.

I can only imagine what you yourself would do if you came down with lyme and its coinfections.....I assure you that the tone of your article and opinions of IGeneX would quickly change if you are thrown into the same pit of fire that we lyme patients find ourselves.

Might I suggest you read the following sources that are repleat with information you could find useful, and in addition, there is an excellent source for the controversy about laboratory testing and interpreting the lab results available in the Summer '04 issue of the LymeTimes, available at CALDA's web site. (California Lyme Disease Association). The link there is: http://calda.intranets.com

I would recommend the following papers for your perusal:
ILADS Diagnostic Hints & Treatment Guidelines for Lyme and Other Tick Borne Illnesses; available on the ILADS website www.ilads.org

The Neuropsychiatric Manifestations of Lyme Borreliosis; available on the Lyme Net on-line library www.lymenet.org

Laboratory Testing for Lyme Disease; available on this website: www.jemsekclinic.com/lyme4.php

The books I would recommend that you read are:
Coping with Lyme Disease, 3rd edition; by Denise Lang, ISBN# 0-8050-7563-1
Healing Lyme, Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections; by Stephen Harrod Buhner, ISBN# 0-9708696-3-0

and perhaps you would like to review this videotape about lyme disease, put out by Dr. Richard Horowitz, Lyme Disease & TBDs, New Diagnostic and Treatment Protocols; available at www.cervantes.productions.com

or I would be happy to supply you personally with a DVD at no charge.

Paula Langhoff www.Sewill.org
Southeastern Wisconsin & Illinois Lyme Leagues
PO Box 444
Hustisford, WI 53034


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janet thomas
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WOW, WOW and WOW-great work guys!

Breathwork- I noticed your little slip up (DNA) but I bet they won't.


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breathwork
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Yeah, Janet, it's a little embarassing....another kind soul here emailed me this morning so I could do a little damage control...

Oh well...such is the lyme life on occasion!


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Tincup
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Woah!!!

I am soooooooooo impressed with the letters! You guys REALLY have it together!

Now.. who will write one for me?

HA! I am embarrased to even post one now after seeing these letters.

But I will try.

Keep up the good work.

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



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Lymerayja
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To the top.
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FightFireWithWater
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Some impressive work here!

Really appreciated having the citations included with the letter you posted here, Lymeraja.

Just to let you know, it seems that the "Washington Post" link does not bring up the article referenced. Also at this point,anyway, the links for references 7,8,9 and 11 are dead.

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


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FightFireWithWater
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Good suggestion about sending a "pre" and "after" video, pq.
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Lymerayja
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quote:
Originally posted by Charles05:
I am curious to know how the LDA knew about the Times plans to run this article in the future?

...
Just wondering how one gets to know about a story before it even gets published...

....


Well, "Charles", maybe it's by the same mechanism that you "just happened" to know in advance of court proceedings, the exact false charges that would be laid against the chemist Kathleen Dickson, who testified at the FDA regarding the lack of safety and inefficacy of the Lymerix vaccine,which led to her losing her children and spending several months in jail: "lucky guess", as you said.

Lisa


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Ireallywant2believe
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Where was this study published or where does this data come from? I never saw this before.

I'm wondering about the study methodology, How was improvement in patients measured?

Is this an ILADS study? Wow if this is in a respected journal this really could help depending on how it was done.

But you say something about a survey? If it is a survey on Lymenet I'd be careful about using it because then it really doesn't have any scientific validity.

That doesn't mean it is wrong but it doesn't mean it is even close to right either.

Problem is that if Lyme patients start out sure they have Lyme and then decide a test is good or bad based on whether it validates that belief, that isn't how tests are determined to be scientifically valid.

In fact, saying that Igenex, Bowen and MDL produce two three or four times as many positive results as Quest and Stoneybrook and other labs, doesn't make them a good lab or make their tests good. It means the results are what the patients wanted to hear and I think that is one of the criticisms of Igenex and those other labs by the "ducks."

Another criticism is that these tests haven't been scientifically validated the way tests usually are.

That doesn't mean I agree, I'm just saying what I've heard the "duck" camp doctors say or write. But even some people in our camp say it too, like the Lyme literate microbiologist who wrote many articles about Lyme and Lyme testing, he's a support person and definitely on our side but he says the same things.

I heard a story about Mdl recently, of those three you say they had the lowest % of positives from people you think are positive, I'm not sure why you or they think they are though. But the story was that when they first were around and until like last year, lots of people were getting positive test results from them and since Igenex had been under a lot of heat llmds starting using them. But then they supposedly tightened up testing procedures and standards and people started getting lots of negative test results. Suddenly they went from being a "good" lab to be a "bad" lab.

Self fulfilling prophecy isn't a valid way to measure the validity of a test.

Bowen? I really don't know why anyone would have faith in that lab.

One more story. A few years ago there was a lab in Illinois called Gensys labs. They started doing a test that they said worked to culture the Lyme bacteria and then they did sensitivity testing to recommend an antibiotic that worked for that strain. All the llmds started using the lab.

It was amazing because everyone always agreed that culturing the Lyme bacteria was very difficult to do and even though culture was a gold standard for testing, it just didn't work in Lyme. I think one reason infectious disease doctors are so skeptical about Lyme is that they're used to being able to culture germs and do sensitivies and they couldn't with this one. So it didn't fit their mode and they just blew it off.

But Gensys turned out to be a fraud. A total fraud. The lab director lied about having a degree and had a criminal record. A well known microbiologist who has written a lot about Lyme and is a support group leader in the midwest visited the lab and found that they didn't even have the proper equipment to be doing what they claimed to be doing.

It turned out to be too good to be true, and they actually couldn't do what no one else could do.

That lab never published anything establishing the validity of their tests. That's one of the problems with these labs too.

Everyone thought they were "good" because they were telling everyone what they wanted to hear. Even the llmds jumped on the bandwagon, I think because they do make clinical diagnoses but like to have a positive test to put in a patient's file.

But the whole thing was a fraud.

So did we learn anything? I don't know. Bowen came along saying the same kind of things and most people jumped right on the same type of bandwagon.

That whole thing with the "Bowen healing method" made me skeptical right away.

The point I'm trying to make is that being told what you think is true and want to hear doesn't prove a test is valid or a lab is "good."

I actually think Suny Stoneybrook is a really good lab. Dr L in Armonk NY, a really well known llmd with credentials uses them. Some of the better llmds do not use Bowen or trust their results. Dr P from CT has been openly skeptical about Bowen and supposedly he helped work on and develop the test that they use.

Bottom line, Lyme testing isn't very reliable at all. There's lots of reasons, part of it is the dearborn standard which is too rigid and requires too many bands instead of allowing a doctor to consider whether the bands that do appear are significant and unique.

But I think we really have to be very cautious about data like this and how it is produced and collected, a survey here doesn't prove anything scientifically.

Before I get flamed for saying this, please read carefully. I'm not saying that the tests are good or bad. I'm saying that we have to be careful about how we do make a conclusion like that. I don't think most patients or even most doctors have the background to say a lab is good or bad, that includes when the ducks say Igenex is bad but also when llmds say Igenex is good.

Without visiting the lab, knowing if they use proper techniques, how the tests were validated and reading the validation studies critically, and a thorough technical analysis, how does anyone really know? That very lyme literate microbiologist has made these points for years, so I'm summarizing them and repeating them.

I think the emphasis should be on lyme being a clinical diagnosis instead of us arguing that we need positive tests and saying the ones that are positive are automatically "good." But a clinical diagnosis does have to have some standards, you can't just diagnose everyone automatically with Lyme.

That's my two cents, I'll send the bill along.


quote:
Originally posted by Tincup:
`````````````````````````````````````````````````````````````````````````````````````````````````````````````

Results of blood tests for evidence of exposure to Lyme disease

June 2004

72 samples were sent to labs from Lyme disease patients in 9 different states (CA to IN to NY to FL).

44 samples were sent to IGeneX, MDL, or Bowen Lab.

39 were accurate and indicated positive results- 5 were false negative.

28 samples were sent to Stoney Brook, Quest, or Labcorp.

8 were accurate and indicated positive results- 20 were false negative.

Individual lab results-

In patients with confirmed cases of Lyme disease and/or tick borne coinfections:

IGeneX- More than 85 percent of the samples tested were positive

MDL- Approximately 65 percent of the samples tested were positive

Stoney Brook- Approximately 30 percent of the samples tested were positive

Labcorp- Only 25 percent of the samples tested were positive

Quest- Only 20 percent of the samples tested were positive

*ALL patients were treated with antibiotics for Lyme disease and improved with treatment.*




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Ireallywant2believe
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That depends on what type of insurance you have. Some work that way but most now don't. Most insurance now requires you to see labs that are approved and in their network, and most doctors have to choose a lab, that's called capitation.

You must have old fashioned indemnity type insurance. That's pretty rare now. Most have HMOs or PPOs.

Lots of times with those types if you go out of their network you get greatly reduced payments and have to pay out of pocket and risk no reimbursement. Some provide 60% or 80% out of network, some pay 0.


quote:
Originally posted by pmerv:
If a lab or doctor "doesn't bill insurance," what that means is you have to do the paperwork yourself. I have several providers that don't bill insurance, however the insurance will pay if I send in the paperwork.


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lou
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Ireallywant2believe - you left out info on Stony Brook. They changed their testing to produce fewer positives. Don't know the details, have the impression that the are now testing for fewer strains. So, this can be manipulated.

Also, clinical diagnosis sounds good, but any doc that doesn't have a positive on file for patients will be in hot water when the state medical board comes calling. Worse yet, if the records show repeated negatives. Testing does matter.


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Ireallywant2believe
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Lou I don't know anything about SUNY changing their test or standards. Do you have any details? If I left something out it was because I didn't know about it. Thanks.

About needing a positive test and clinical diagnosis. I said in one post how I know the llmds feel like they need a positive to treat. But that doesn't mean a lab that gives a lot of positives is doing good and valid tests. That's the self fulfilling prophecy tell me what I want to hear standard. That's a lot of the criticisms of these labs, that the patients think they're good using that kind of standard but the question is whether the tests are scientifically valid or not.

Face it, honestly I don't think any of us are microbiologists, so I don't think we know. At least I'll admit that I'm not. And the one really Lyme literate microbiologist I know has said these things, he's written a lot about Lyme testing. Most of the llmds don't know enough either, medical school doesn't teach them to be scientists or microbiologists, and they don't do technical analysis or evaluation. Really they're in the same boat as we are, they think they need a positive test to treat us and any lab that gives it to them is okay by them.

But that was a mistake when they relied on Gensys.

Maybe we ought to be fighting for the rights of our doctors to use their judgment and make clinical diagnoses instead of buying into the we need a positive test argument.

Have you read that FDA bulletin? It says don't rely on Lyme tests positive or negative and do make a clinical judgment.

So I think this is fighting the wrong battles. Tests are no good for Lyme and I don't know that Igenex or MDlabs or Bowen has proved that their tests are good, I'm pretty sure they haven't. If the Lyme bacteria isn't easy to test for, patients shouldn't be punished by denying them diagnosis and treatment if they don't have a test proving they have Lyme. That's silly. It is absurd.

I think that by defending labs that we don't know are good or bad and criticizing others using the self fulfilling prophecy standard, that we've already lost the argument. We should just be arguing that doctors need to be free to use their clinical judgments to make clinical diagnoses. It sure says that in almost every article about Lyme I've ever seen or read.

******************************************
FDA bulletin http://www.fda.gov/medbull/summer99/Lyme.html

FDA Medical Bulletin * Summer 1999 * Final Issue

Lyme Disease Test Kits: Potential for Misdiagnosis
By S. Lori Brown, Ph.D., M.P.H., Sharon L. Hansen, Ph.D., John J. Langone, Ph.D., Nancy Lowe, M.A., and Nancy Pressly, B.S. Engr., Center for Devices and Radiological Health

The Food and Drug Administration (FDA) is concerned about the potential for misdiagnosis of Lyme disease based on the results of commonly marketed tests for detecting antibodies to Borrelia burgdorferi, the organism that causes Lyme disease. It is important that clinicians understand that a positive test result does not necessarily indicate current infection with B. burgdorferi, and a patient with active Lyme disease may have a negative test result. (1-5)

The tests should be used only to support a clinical diagnosis of Lyme disease and should never be the primary basis for making diagnostic or treatment decisions. Diagnosis should be based on a patient history, which includes symptoms and exposure to the tick vector and physical findings. The most definitive diagnostic procedure is biopsy and isolation of B. burgdorferi in culture.

Assays for anti-Borrelia burgdorferi (anti-Bb) can provide evidence of previous or current infection, but to improve reliability FDA supports the Centers for Disease Control and Prevention (CDC) recommendation for two-step testing and interpretation of results (1).

The first step is to perform an assay that detects either total or class-specific antibodies (IgM or IgG) by using enzyme-linked immunosorbent technology ("ELISA" or "EIA") or indirect immunofluorescence microscopy ("IFA"). IgM levels usually peak 3 to 6 weeks after infection. IgG antibodies begin to be detectable several weeks after infection and may continue to develop for several months and generally persist for years.

A negative result indicates only that there was no serologic evidence of infection with B. burgdorferi. It should not be used as the basis for excluding B. burgdorferi as the cause of illness, especially if the blood was collected within 2 weeks of when symptoms began.
A positive or equivocal result is presumptive evidence of the presence of anti-Bb. It should always be followed by second-step testing and should not be reported until the second step testing is completed.

The second step is to perform a Western-blot (immunoblot) assay, a more specific assay than that used for the first step

A negative result indicates that no reliable serologic evidence of B. burgdorferi infection was present. A negative result should not be used as the sole basis for excluding B. burgdorferi as the cause of illness. If Lyme disease is suspected, a second specimen collected 2 to 4 weeks after the first specimen should be tested. If retesting, do the first step and if the result is positive or equivocal, do the second step.
A positive result provides serologic evidence of past or current infection with B. burgdorferi. Because the presence of even specific antibodies to B. burgdorferi does not always indicate current infection, a positive result can support, but not establish, a clinical diagnosis of Lyme disease.
Even using the two-step approach, the sensitivity and specificity of the combined test results are inadequate. Because assays for anti-Bb should be used only for supporting a clinical diagnosis of Lyme disease and not for "screening" asymptomatic individuals, the result of the first-step assay is best described as "initial" rather than "screening." Likewise, the second-step Western-blot assay is best described as "supplemental" rather than "confirmatory", because of the low specificity for detecting IgM anti-Bb. Thus, a positive IgM anti-Bb result alone is not adequate for supporting a diagnosis of Lyme disease in persons with illness of greater than one-month duration.

Several factors contribute to the limitations of using ELISA, IFA, or Western blot tests for supporting a diagnosis of Lyme disease. The stage of disease in which the specimen was taken is critical. Many patients with active or recent infections do not have detectable anti-Bb in a single specimen. This happens because such antibodies often develop after manifestations of early infection or because detectable anti-Bb may diminish or never develop in patients treated with antibiotics. Further, a positive test result can be true evidence of previous infection with B. burgdorferi and unrelated to a current illness. Assays for anti-Bb may yield false-positive results, because antibodies to B. burgdorferiantigens may cross react with antigens associated with autoimmune diseases or from infection with other spirochetes, rickettsia, ehrlichia, or other bacteria such as Helicobacter pylori. (6,7)

In summary, serologic testing is not useful early in the course of Lyme disease, because of the low sensitivity of tests in early disease. Serologic testing may be more useful in later disease at which time sensitivity and specificity of the test is improved.

References

Center for Disease Control and Prevention. Recommendations for test performance and interpretation from the second national conference on serologic diagnosis of Lyme Disease. MMWR 1995; 44:590-591.
Association of State and Territorial Public Health Laboratory Directors and the Centers for Disease Control and Prevention. Recommendations. In: Proceedings of the Second National Conference on Serologic Diagnosis of Lyme Disease (Dearborn, Michigan). Washington, DC: Association of State and Territorial Public Health Laboratory Directors 1995; 1-5.
Craven RB, Quan TJ, Bailey RE, Dattwyler RJ, Ryan RW, Sigal LH, Steere AC, Sullivan B, Johnson BJB, Dennis DT, Gubler DJ. Improved serodiagnostic testing for Lyme disease; results of a multi center serologic evaluation. Emerging Infect Dis 1996; 136-140.
Bakken LL, Callister SM, Wand PJ, Schell RF. Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State Laboratory of Hygiene/College of American Pathologists proficiency testing program. J Clin Microbiol 1997; 35:537-543.
Johnson RC, Johnson BJB. Lyme disease: serodiagnosis of Borrelia burgdorferi sensu lato infection. In: Rose NR, Macario EC, Fahey JL, Freidman H, Penn GM, eds. Manual of Clinical Laboratory Immunology, 5th ed. Washington, DC: American Society for Microbiology, 1997: 526-533.
Magnarelli LA, Miller JN, Anderson JF, Riviere GR. Cross-reactivity of nonspecific treponemal antibody in serologic tests for Lyme disease. J Clin Microbiol 1990;28:1276-1279.
Schwan TG, Burgdorfer W, Rosa PA. Borrelia. In: Murray PR, Baron EJ, Pfaller MA, Tenover FC, Yolken RH, eds. Manual of Clinical Microbiology, 6th ed. Washington, DC: American Society for Microbiology, 1995:626-635.

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

REPORT SERIOUS ADVERSE EVENTS AND PRODUCT PROBLEMS TO MEDWATCH
1-800-FDA-1088


quote:
Originally posted by lou:
Ireallywant2believe - you left out info on Stony Brook. They changed their testing to produce fewer positives. Don't know the details, have the impression that the are now testing for fewer strains. So, this can be manipulated.

Also, clinical diagnosis sounds good, but any doc that doesn't have a positive on file for patients will be in hot water when the state medical board comes calling. Worse yet, if the records show repeated negatives. Testing does matter.


[This message has been edited by Ireallywant2believe (edited 08 July 2005).]


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lymelighter2
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Tincup,
I will gladly ghost write a letter for you. Can I have the link for your sit it out and dance little guy? I LOVE IT, LOVE IT, LOVE IT! Or should I just cut 'n paste?
PJ


quote:
Originally posted by Tincup:
Woah!!!

I am soooooooooo impressed with the letters! You guys REALLY have it together!

Now.. who will write one for me?

HA! I am embarrased to even post one now after seeing these letters.

But I will try.

Keep up the good work.



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SteveInMinnesota
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Ireallywant2believe: Thanks for the well thought out comments.

I was just thinking, there are two employment/drug-testing centers near where I live. One is known to produce about twice as many positives than the other (as a percentage). Passing the drug-screening tests helps people get jobs and improves their lives. So, which one is "better"? The answer is that it depends on your objective. In reality, it would be better to know which one is "right".

In any case, I had my testing done at Igenex but I'm not sure how personal anecdotal stories are going to help.


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lou
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Well, they are probably not going to help because the outcome of this story is predetermined. It will just be another hatchet job, with no information wanted that does not conform to their bias.

The idea that we should campaign for doctors to be able to diagnose clinically is about 10 years late. You may have noticed that state medical boards and insurance companies ignore clinical diagnosis.


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Greatcod
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Why not use this as an opportunity to
expose the "Conventional" camp's horrid record of Lyme testing and diagnosis over three decades. If I had the resources, I would threaten to sue if the article is confined to Igenex, without a substantial
description of "Conventional's" almost criminal record of useless tests and
underdiagnosis. And throw in their complete failure, along with the CDC, to to describe
accurately Lyme's presenting symptoms. This is hardball,is it not?

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The exact words, not that it matters, were
"almost ciminal". They are sadly quite accurate.

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HEATHERKISS
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So when was this article supposed to be coming out? I wrote my letter this past sunday.
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HEATHERKISS
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Oopsey It was only 2 days ago that I sent a letter. Gee I must have Lyme brain.
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pippy
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emailed yesterday
would fax be ok too
I'll do that tonight
Also someone find the stuff on how Dr. CR J uses /interprets tests and that Igenex has to go through rigorous double blind testing on non-lyme blood comparing it to lyme blood.
That have inspectors come all the time
Don't they also have to replicate their results or have them replicated in some way?

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CA quest
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This was the email I sent...but I edited it alittle bit. Wish I had edited it better before I sent it originally! Quest

Dear Dan,

I have heard that you are in the process of writing an article that will be, to say the least, uncomplimentary toward IGeneX laboratory. If this were so it were a grievous fault. The real story might be who planted the idea to do this story with you and why. But be that as it may I hope that you are engaging in an in depth interview with the owner of IGeneX and are asking him questions and allowing him to respond to any issues you are thinking of raising. Otherwise you will have a very biased and inaccurate article that will hurt a hell of a lot of people.

I am a lyme disease patient. My objective confirmation of this infection was in part due to a very positive western blot from IGeneX. (it actually met CDC surveillance standards for a positive test) But the diagnosis was mainly based upon the clinical presentation as assessed by a physician who no longer treats lyme patients due to the Insurance industries response to treatment issues. He is getting older and doesn't want the hassle any longer.

At the age of 50 after a trip to the Pacific NW I developed a stiff neck followed by a slew of symptoms that came & went including episodes of EXTREME fatigue and neurological sensations that were frightening because they were so bizarre. Burning & stabbing pains, twithcing & fasciculations, neuropathathies and a banding around my upper trunk. I had been as healthy as the proverbial horse up to that moment this all began in 1993. I saw more than 15 doctors over the next two years and everything including an ELISA test for Lyme came back normal or close to normal. I knew nothing about Lyme at that time and discounted that as a far out possibility anyway as I never saw a tick or rash. ( I didn't know at that time that the ELISA is pretty worthless as a diagnostic test as it only picks up about 30-50% of the cases ....depending upon which studies you are looking at. )

Then I reached a point where I could not work any longer. Then I bought a computer & cross referenced my symptoms in over & over and narrowed it down to a possibility of lyme, then I found the doctor who had seen the wide range of symptoms that thise disease produces and he diagnosed me. Then I took a slew of antibiotics for years...at the 2 yr point my "herxing" ( an immune response to the proteins that are liberated after die off and which is a very subjective proof of infection) started to diminish...and I started to work part time again. At the 4 yr point the herxing seemed to have stopped and so I stopped antibiotics. I am fully productive for someone of my age now...but am still subject to little flare ups of symptoms every month or two. At which point I self medicate and take a small course of more antibiotics. I still get little herx responses when I take a course. The herx manifests itself by my upper neck feeling stiffer & swollen along the spinal cord & pressures up into the base & top of my head + a fluish feeling. (All of which I used to have frequently & with much more severity). In other words this is a reproducible and so meaningful response.

It is my understanding that a Western Blot from IGeneX reports on ALL of the pertinent bands (immune reactions to outer surface proteins of the spirochete Bb) and that they use more spirochetal strains to be measured against. The bands include those most specific bands that the vaccines were predicated upon. Most other labs use kits that do not include these two very pertinent bands for reasons that escape me...but which was established as protocol in the 1994 Dearborn conference (as the vaccines were getting ready to go to market...and they did not want this to complicate vaccine sales). I have heard that those in attendance at that meeting had differences of opinion on this issue also. The ones with an oar in the vaccine industry held sway. There are only two labs I know of that report on ALL of the bands and they are Lyme reference or specialty labs...not general labs. One of these is IGeneX.



Sincerely,


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Ireallywant2believe
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Lou I don't think it is ten years too late to say that all the current literature and current textbooks out there along with the FDA bulletin, current information from the CDC all say clinical diagnosis.

That means it is inappropriate for an insurance company to insist on positive testing. If they do you have to fight them.

Conceding that a positive test is needed, means we've already lost a big battle. Then we're stuck with the tests that are known to be inaccurate. Very inaccurate.

That then puts us in the situtation where labs that give more positive results are the only ones we can use. It is unfortunate but true that those labs have problems. And how do we fight that? By saying "oh that's a good lab because I got a positive test there and that confirms what I think I have so the other labs that gave me negative tests are wrong." As I said, none of us really have a basis to say what lab is good or bad since we're not microbiologists or experts in any relevant area. So we're left using this self fulfilling prophecy standard, they're good because they're telling us what we want to hear.

It doesn't help that they just haven't published things validating their tests. It doesn't help that Bowen did this thing where they charged for the tests but called it a donation for research. What would have happened if you didn't donate? You wouldn't get the test result. Which means it was a charge not a donation. It doesn't help when Klempner publishes a study about the LUAT and Igenex never responds or demands an ORI investigation. It doesn't help when MDl has no validation studies published either and neither does Igenex or Bowen labs.

Citing self fulfilling prophecy statistics based on internet surveys doesn't add any credibility either.

Here's the thing. You might have Lyme for sure but because all the tests are so bad not ever be able to get a positive test. If a lab gives a positive result but it is not scientifically valid that doesn't mean you now have a positive test which is reliable any more than a negative test rules out that you have Lyme.

Insurance companies can't force you to prove something that is unprovable. If they insisted that you prove how many angels were on the head of a pin, would that be reasonable? No. And I'd rather fight their demand that I prove something unprovable than have someone tell me that they have a test that does prove something unprovable because then the insurance company can just prove the test is invalid and you've already given up the battle you should be able to win.

Same with medical boards and I don't think you're right that any medical board has rejected the idea that Lyme is a clinical diagnosis. What case do you think that happened in? Each of the cases against llmds had specific charges and issues. None of them did a medical board say that you can't diagnose clinically.

I think it is a mistake to write any letter to this reporter saying that anyone knows he is going to do a hatchet job or has decided a certain angle on a story because no one can possibly really know that. A letter saying I hear you're doing an unfavorable story, or worse, one saying that the NY times stinks, well that just really can't possibly help.

I did say I think a good way to do this would be to post stories about testing. Even better scientific articles. Post the FDA bulletin. Post some patent applications which show that even the ducks say Lyme testing is unreliable when they're tyring to patent a new test. Show how statistically the false negative rates of the elisa make it absurd to use a screening test for western blot confirmation and how the two step testing method actually causes more false negatives.

But patient stories which amount to "I'm sure I have Lyme and finally found a lab that will agree" aren't really very convincing and running to insurance companies with positive tests from them isn't convincing them either. I don't think using tests that are labelled "FOR RESARCH PURPOSES ONLY" as a basis for diagnosis is very convincing to medical boards or insurance companies.

I'd rather argue that my doctor has a right to make a clinical basis and did so and the tests are inaccurate and unreliable and the FDA says not to rely on them and put the burden on the insurance company to disprove it than accept the burden that I have to prove I have Lyme using testing that just isn't accepted.

See I can prove the insurance company has no right to use a negative test to deny diagnosis or treatment and I can prove that my doctor is the one with a right to make a clinical diagnosis and say something is medically necessary. I'd rather fight that battle than the one we're setting ourselves up for. Sometimes a debate is won or lost before anyone says a word and that is based on how a question is asked. When we let them set the terms of the debate and they set them in an absurd and inappropriate way, we just can't win. But if we can set the terms of the debate in terms we can show are reasonable and appropriate we can win.


quote:
Originally posted by lou:
Well, they are probably not going to help because the outcome of this story is predetermined. It will just be another hatchet job, with no information wanted that does not conform to their bias.

The idea that we should campaign for doctors to be able to diagnose clinically is about 10 years late. You may have noticed that state medical boards and insurance companies ignore clinical diagnosis.



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Ireallywant2believe
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I think this letter is really well written and would be great except for the first sentence. No one knows whether he is writing an article which is going to be uncomplimentary towards Igenex. The article hasn't been written yet. And I don't think telling a reporter that taking a certain angle is a grievous mistake is a good idea either. Just like most people or maybe even more so, reporters don't like to be told what to do or think.

The rest of the letter is great.

I think it should be posted and then LDF or LDA should forward the reporter posts like that.

I'd call the topic "Experiences with Diagnosis and Testing" or something like that. I'd try to avoid stories which say "I'm sure I had Lyme and then finally found these labs that agree" because if such a story is being written, that only proves their point not ours.

One minor thing. I think a test is positive or negative not very positive or very negative. You're either pregnant or not, and the test says + or - not very pregnant or very not pregnant.

Good letter. One of the two best. The one other good one I thought was from breathwork poster.

quote:
Originally posted by CA quest:
This was the email I sent...but I edited it alittle bit. Wish I had edited it better before I sent it originally! Quest

Dear Dan,

I have heard that you are in the process of writing an article that will be, to say the least, uncomplimentary toward IGeneX laboratory. If this were so it were a grievous fault. The real story might be who planted the idea to do this story with you and why. But be that as it may I hope that you are engaging in an in depth interview with the owner of IGeneX and are asking him questions and allowing him to respond to any issues you are thinking of raising. Otherwise you will have a very biased and inaccurate article that will hurt a hell of a lot of people.

I am a lyme disease patient. My objective confirmation of this infection was in part due to a very positive western blot from IGeneX. (it actually met CDC surveillance standards for a positive test) But the diagnosis was mainly based upon the clinical presentation as assessed by a physician who no longer treats lyme patients due to the Insurance industries response to treatment issues. He is getting older and doesn't want the hassle any longer.

At the age of 50 after a trip to the Pacific NW I developed a stiff neck followed by a slew of symptoms that came & went including episodes of EXTREME fatigue and neurological sensations that were frightening because they were so bizarre. Burning & stabbing pains, twithcing & fasciculations, neuropathathies and a banding around my upper trunk. I had been as healthy as the proverbial horse up to that moment this all began in 1993. I saw more than 15 doctors over the next two years and everything including an ELISA test for Lyme came back normal or close to normal. I knew nothing about Lyme at that time and discounted that as a far out possibility anyway as I never saw a tick or rash. ( I didn't know at that time that the ELISA is pretty worthless as a diagnostic test as it only picks up about 30-50% of the cases ....depending upon which studies you are looking at. )

Then I reached a point where I could not work any longer. Then I bought a computer & cross referenced my symptoms in over & over and narrowed it down to a possibility of lyme, then I found the doctor who had seen the wide range of symptoms that thise disease produces and he diagnosed me. Then I took a slew of antibiotics for years...at the 2 yr point my "herxing" ( an immune response to the proteins that are liberated after die off and which is a very subjective proof of infection) started to diminish...and I started to work part time again. At the 4 yr point the herxing seemed to have stopped and so I stopped antibiotics. I am fully productive for someone of my age now...but am still subject to little flare ups of symptoms every month or two. At which point I self medicate and take a small course of more antibiotics. I still get little herx responses when I take a course. The herx manifests itself by my upper neck feeling stiffer & swollen along the spinal cord & pressures up into the base & top of my head + a fluish feeling. (All of which I used to have frequently & with much more severity). In other words this is a reproducible and so meaningful response.

It is my understanding that a Western Blot from IGeneX reports on ALL of the pertinent bands (immune reactions to outer surface proteins of the spirochete Bb) and that they use more spirochetal strains to be measured against. The bands include those most specific bands that the vaccines were predicated upon. Most other labs use kits that do not include these two very pertinent bands for reasons that escape me...but which was established as protocol in the 1994 Dearborn conference (as the vaccines were getting ready to go to market...and they did not want this to complicate vaccine sales). I have heard that those in attendance at that meeting had differences of opinion on this issue also. The ones with an oar in the vaccine industry held sway. There are only two labs I know of that report on ALL of the bands and they are Lyme reference or specialty labs...not general labs. One of these is IGeneX.



Sincerely,



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breathwork
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Igenex did respond to the accusation on its practices concerning the LUAT. This happened years ago...

It was investigated rigorously and cleared.

I am amazed at how so many here are stating opinion and supposition as fact. If you haven't discussed these issues with Dr.Harris or Igenex, then you can't state positively what has transpired.

Igenex has been investigated and licensed by the testing laboratories licensing board. My lyme brain does not remember the actual name for this group right now. The FDA does not license or investigate these laboratories.


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Ireallywant2believe
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Igenex didn't publish anything in a medical journal or the journal where klepmner published unless I missed it. If I did, please post it, I'd love to see their response.

And they didn't demand an ORI investigation was what I said.

What are you saying was investigated rigorously and cleared? Cleared of what by whom?

What Dr Harris says to you or me or any other patient isn't important compared to those things. Lyme patients don't need convincing. Other doctors do.

If Dr Harriss has some serious accusations to make, he needs to document them, not talk about them. If he is right that his test was sabotaged, why would he sit back and take it instead of taking legal action?

What is the difference betweent the LUAT and the Lymedotblot assay? Do you know. I don't.

CLIAA certification is not the same as validation of the test. It is about minimal proficiency in general and keeping records correctly and things like that.

FDA approval is only needed if you are going to sell test kits Igenex doesn't do that they do their own testing. If they did license their tests to others it might be good because if quest or people like that did a LUAT the bona fides of the lab wouldn't be questioned.

quote:
Originally posted by breathwork:
Igenex did respond to the accusation on its practices concerning the LUAT. This happened years ago...

It was investigated rigorously and cleared.

I am amazed at how so many here are stating opinion and supposition as fact. If you haven't discussed these issues with Dr.Harris or Igenex, then you can't state positively what has transpired.

Igenex has been investigated and licensed by the testing laboratories licensing board. My lyme brain does not remember the actual name for this group right now. The FDA does not license or investigate these laboratories.


[This message has been edited by Ireallywant2believe (edited 09 July 2005).]

[This message has been edited by Ireallywant2believe (edited 09 July 2005).]


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breathwork
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A letter of rebuttal was written...

The lab was then investigated as the accusations made against Igenex involved handling and processing of the samples...The docs submitting the samples admitted openly to not maintaining temps and quality of shipping openly. Hence the tests could not have been valid. Of course, the submitting docs didn't admit to short falls in handling until after the publication of their defaming article.

Following the article Igenex was accused of mishandling samples, not maintaining minimun standards of laboratory procedure and of their reagents.

The investigation followed and Igenex was shown to be above board in every way that the CLIAA measures.


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breathwork
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I dont' know what you mean by Dr. Harris making serious accusations....Or about legal action...That is entirely his call.


The Western Blot that Igenex does would be pretty tough to put in a kit I would think...maintaining the quality of the reagents in a mass produced kit would be tough...plus Igenex tests for far more bands than the already approved kits do. Bands that most LLMDs find valuable in diagnosis and ongoing treatment.

Western Blots aren't easy tests to perform as well...how well they are done is important...meaning the skills of those performing the tests as well as the lab and the reagents involved...It's not as easy as a CBC or a pregnancy test...

My impression of Dr. Harris is of a dedicated scientist. When his lab has been challenged and investigated it passes with flying colors. His testing is accepted as the best by most LLMDs...That's what matters to me.

I can't speak for him...I can only speak to my experience. I find him to be compassionate, extremely intelligent and integrous. My daughter has done research in his lab and I live in the same town, so I have had some experience of the man and the lab. As a BSRN, a lymie and a mom I find him to be a remarkable man and his work passes my test of integrity.

If it doesn't pass yours, then speak with the man. He does not hide out in a tower. If I were him, I would let my work and reputation among my colleagues speak for itself. That is what I would do. I can't speak for anyone else.


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breathwork
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OK...as to the LUAT vs Dot Blot, I'm not up on that...I do remember Dr. S. saying that the Dot Blot is like a second generation of the LUAT...but that's as much as I know. I haven't looked into it.

My and my children's testing has been the western blot. Coinfections done there too, but not the LUAT or Dot Blot.


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breathwork
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Now I've gone back and read the thread again....

From what I understand the article published that started all the fuss over Igenex and the LUAT was years ago...I recall that it was written to discredit Igenex. The authors sent in samples and controls for testing...and the results that came back were what was challenged...

After the fact it was found out that the samples to be tested were mishandled on the shipper's, ie author's end...almost guaranteeing that the results would be skewed and unreliable.

The article was published...Igenex was shocked as heck, investigated what had happened and found out that the samples were not up to snuff...

A letter of rebuttal was written but never published.

Complaints were made against the lab based on the article by a group of folks who were intent on shutting down Igenex. The accusations were pertaining to procedure and quality of lab standards.

The lab was investigated and the results were not what the accusers expected. Igenex was found to be above board.

The value of the LUAT in the medical community's eyes was diminished by the article. It was an investigational test at the time. Igenex was looking for a first tier test that would be more reliable than the Elisa as so many patients were being denied care and reimbursement for treatment based on the Elisa alone. Clearly many were ill, but the gold standard test was illusive.

I don't know know how reliable the LUAT is...we'll most likely never know. Dr. Harris was trying to find a better way and the folks back east were trying to shut him down. I believe that it's as simple as that.

They challenged the test itself and, rather than following the required handling procedures, failed to do so, resulting in results that were hoped for, in my opinion.

They then challenged the lab on its procedures and quality standards to try to shut it down. They failed.

The LUAT pretty much fell by the wayside after that. Dr. Harris then used what he knew from the LUAT work and developed the dot blot assay. I'm not familiar with it's track record yet as Igenex western blots have been used with my family, and my interest with the LUAT and dot blot faded.

My daughter's research concerned the expression of outer cell proteins of Bb under differing environmental conditions. She used PCR testing to determine the influence of environmental changes like temperature and alkalinity. She was in no way involved in testing of patient's blood to determine the presence of Bb infection.

I don't know why Dr. Harris has not published other work done at Igenex, or if indeed work done there has not been published. I have never asked or researched it.

Perhaps it is ongoing work which will support further development in testing. Given how Igenex has been attacked in the past, I would hold it close to the vest too. This is just my opinion.

This is such a political disease being challenged at every level by those who have an interest in not providing the support that many of us clearly need. It's startling, it's sad...

I wonder how this environment of challenge and suppression would change should a gold standard test be deleloped for lyme. I hope to see that day soon. Hope springs eternal!

We don't know the slant of the article that is being pondered at NYT....I agree that we can only share our experience with lyme and testing to hopefully influence the reporter toward a balanced measure. I also agree that accusing a reporter as being unfair and biased prior to the article being published is fruitless, and could easily be counterproductive.

What I know is that no matter how I believe, I can only share my experiences. Others will do what they think necessary to achieve a goal. I certainly may not agree with their approach...and I know that I can't change it, only present my views and hope that they will be considered.


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Tincup
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Originally posted by Ireallywant2believe:

--Where was this study published or where does this data come from? I never saw this before.

Really? It's been all over the place... a number of web sites have it for folks to see.

--Is this an ILADS study? Wow if this is in a respected journal this really could help depending on how it was done.

GOOD IDEA! Would you be willing to volunteer to do a study and have it published? My bet is it would be VERY helpful... and it is badly needed, as you know.

--But you say something about a survey? If it is a survey on Lymenet I'd be careful about using it because then it really doesn't have any scientific validity.

Thanks for the advise.

--That doesn't mean it is wrong but it doesn't mean it is even close to right either.

Maybe it is 1/2 right.. and 1/2 wrong? Sometimes life is like that.

--Problem is that if Lyme patients start out sure they have Lyme and then decide a test is good or bad based on whether it validates that belief, that isn't how tests are determined to be scientifically valid.

Yes.. you are right. You would be a good one to do the tests yourelf.. or a good survey. Then we could be sure it is done the way you would like it to be.

--In fact, saying that Igenex, Bowen and MDL produce two three or four times as many positive results as Quest and Stoneybrook and other labs, doesn't make them a good lab or make their tests good.

I don't recall saying they were good because they had more. I simply reported the results.

By the way.. if this isn't done to suit you... how would YOU do it?

--It means the results are what the patients wanted to hear and I think that is one of the criticisms of Igenex and those other labs by the "ducks."

Then how do we explain the negative results from the labs? Is that what THOSE sick folks wanted to hear after a tick bite, symptoms, etc? I don't really think so.

--Another criticism is...

Perhaps instead of offering up so many criticisms... you might just want to do your own studies so everything will be right.

--That doesn't mean I agree, I'm just saying what I've heard the "duck" camp doctors say or write.

WARNING- If you pay too much attention to ducks... you may start growing feathers and get web feet.

-- But even some people in our camp say it too, like the Lyme literate microbiologist who wrote many articles about Lyme and Lyme testing, he's a support person and definitely on our side but he says the same things.

Ahhhh.. a lab assistant for you. GREAT!

--I heard a story about Mdl recently, of those three you say they had the lowest % of positives from people you think are positive...

I don't THINK those people are positive. I don't make that call. That was what was reported. Tick bite, illness, positive tests, improvement with treatment... blah blah blah... but then.. maybe they were just pregnant and didn't actually have Lyme? Oops.. I am starting to sound like a duck! YIKES!

--I'm not sure why you or they think they are though.

Tick bite, symptoms, improvement with treatment.. positive tests...geeze.. I don't know why they or their LLMD's think they had Lyme. Go figure!

--But then they supposedly tightened up testing procedures and standards and people started getting lots of negative test results. Suddenly they went from being a "good" lab to be a "bad" lab.

Was that determined because folks who tested negative didn't like it?

--Self fulfilling prophecy isn't a valid way to measure the validity of a test.

Yes.. darn those Lyme patients. They should have taken a test for a broken leg... and wished for THAT to be positive instead. Then they wouldn't be needing OUR help... and wouldn't have to worry about the good and bad labs situation.

--Bowen? I really don't know why anyone would have faith in that lab.

Obviously you don't have faith..... so does that mean others shouldn't either? Or is this just idle negative chatter?

--I think one reason infectious disease doctors are so skeptical about Lyme is that they're used to being able to culture germs and do sensitivies and they couldn't with this one. So it didn't fit their mode and they just blew it off.

The ducks screwed up? Or quit on their patients? Hmmmmmm... interesting concept.

--But Gensys turned out to be a fraud. A total fraud. The lab director lied about having a degree and had a criminal record.

You sure know how to dig up dirt on just about everything and everyone. Why try to be so deligent and dedicated to that particular pursuit? Doesn't that get depressing after a while?

--A well known microbiologist who has written a lot about Lyme and is a support group leader in the midwest visited the lab and found that they didn't even have the proper equipment to be doing what they claimed to be doing.

Is that the fellow that might take the job as your lab assistant? Wouldn't THAT be nice!

--That lab never published anything establishing the validity of their tests. That's one of the problems with these labs too.

Yes.. it is difficult to be published if you aren't a duck doing a duck report for a duck journal. If our labs would just PRETEND to be more duck-like.. this wouldn't happen.

--Even the llmds jumped on the bandwagon, I think because they do make clinical diagnoses but like to have a positive test to put in a patient's file.

Shame on them for trying something new... and wanting to find a good lab for their patients.

--That whole thing with the "Bowen healing method" made me skeptical right away.

Didn't it work for you?

Or does it just not SOUND like it would... and that is what you base your opinion on?

What's good for the goose isn't good for the gander now?

--The point I'm trying to make is that being told what you think is true and want to hear doesn't prove a test is valid or a lab is "good."

Same with the Bowen technique? If it doesn't SOUND good.. it must not work?

Interesting.

--I actually think Suny Stoneybrook is a really good lab.

Did you go there too and check their business out? Or does it just SOUND good right now?

--Some of the better llmds do not use Bowen or trust their results.

They must have thought the technique sounded bad too? That is an excellent reason not to use their lab. Once I saw some candy from a company named HERSHEY! I didn't like the way that name sounded.. so I won't eat it.

--Dr P from CT has been openly skeptical about Bowen and supposedly he helped work on and develop the test that they use.

He must not like the technique either then. I guess it didn't work for him.

--Bottom line, Lyme testing isn't very reliable at all.

B-I-N-G-O. Glad to see you point that out. NONE of the labs or tests are perfect.

But some actually do TRY to do their best for folks in a bad situation. Practice makes perfect. We HOPE!

--There's lots of reasons, part of it is the dearborn standard which is too rigid and requires too many bands instead of allowing a doctor to consider whether the bands that do appear are significant and unique.

Yeah.. too bad IGeneX and others take it upon themselves to help the doctors out by reporting all bands and having a better handle on the whole thing. They must have heard about the Dearborn standards... and the CDC and FDA warnings... and figured out by now how crummy they are.

--But I think we really have to be very cautious about data like this and how it is produced and collected, a survey here doesn't prove anything scientifically.

When you get time.. I would LOVE to see the results of yours.. if you would do one.

--Before I get flamed for saying this, please read carefully. I'm not saying that the tests are good or bad.

I actaully thought that is why you were posting all that stuff?

--I'm saying that we have to be careful about how we do make a conclusion like that.

Like commenting in public negatively about the Bowen technique without trying it?

Yes.. we should just stick to the facts and report them as is... and NOT go by what we think SOUNDS good or not.

Oh.. that is what I did!

--I don't think most patients or even most doctors have the background to say a lab is good or bad, that includes when the ducks say Igenex is bad but also when llmds say Igenex is good.

You are right. Most patients I know.. especially the ones here... bless their hearts.. have no business commenting negatively on the labs ability without hard and fast proof of wrong doing ... and without the same or more knowledge to base their opinions on that the labs employees actually have. It is NOT productive... NOT ethical.. NOT smart... and VERY MUCH NOT appreciated by anyone.

And LLMD's are too busy to spend much time visiting all the labs across the country.. and be examining them with a fine tooth comb.. and then try to please the patients, the insurance companies.. and the government officials too.

Sooooooooooooooo....

Good thing the CDC states that Lyme is a CLINICAL diagnosis and negative tests are NOT to be used to rule out the disease.

If we could just get that in the ducks head.. maybe many of us wouldn't be here and wouldn't have wrecked lives due to their BIG, arrogant, duck heads.

--Without visiting the lab, knowing if they use proper techniques, how the tests were validated and reading the validation studies critically, and a thorough technical analysis, how does anyone really know?

You're right.. they don't!

--That very lyme literate microbiologist has made these points for years, so I'm summarizing them and repeating them.

I'm sure Tom appreciates you using his opinions to support yours. Next time you see him.. tell him Tincup said hey!

--I think the emphasis should be on lyme being a clinical diagnosis instead of us arguing that we need positive tests and saying the ones that are positive are automatically "good."

Seems like you agree with the CDC.

--But a clinical diagnosis does have to have some standards, you can't just diagnose everyone automatically with Lyme.

Ya know.. this whole Lyme thing can get quite confusing. What's a girl to do?

--That's my two cents, I'll send the bill along.

Save your paper.... better yet.. save a tree! I've seen enough DUCK bills already... and I'm broke.



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riversinger
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Tincup, you are an absolute gem!

Has anyone heard any word about the article? I originally heard it was supposed to be printed on Friday. Should people still be writing to this reporter?

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

[This message has been edited by riversinger (edited 10 July 2005).]


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Tincup
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Hey rolling.. rolling on the rivvvv errrr...

I missed my "update" call from the big bosses last night (the ones in the "know")... so I am waiting now for a call back.

Actually.. I was gone all day.. hadn't eaten.. was hot as git out... dirtier than a pig in a mud puddle.. and smellier too... and had JUST sat down to some carryout eggplant parmesian when they called me. I THINK I responded with..

"Do you REALLY think I care right now? Leave me alone! I will call you later!"

HA! I wasn't in my best form.. for sure.. but hopefully they will forgive me and I wasn't THAT rude.

I will TRY TRY TRY to remember to ask about an update on this topic. That MAY be why they called me last night.. or maybe it was stuff about the bill??

If they don't know.. I may try to contact the lab on Monday ... and get it direct from the horses mouth.

I will share whatever I learn from them. Thanks for the reminder.

Hope you are rolling right and rolling fine.. and blessing everyone on your banks with music.. sweet sweet music.

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



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Ireallywant2believe
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What is forgotten is that people might well have Lyme but that doesn't mean that the positive test is valid and a test that seems to confirm what is believed doesn't mean the test is good, the lab is good, or there is any validity to the test.

That's the problem. No one I see here has any basis to evaluate what is a good lab or a good test.

The standard that is used is whether the lab and their test seems to confirm what they believe.

That's just not scientifically valid.

I'm not denying that people might have Lyme.

I would say that tincup is wrong. Many people do not remember a tickbite. These ticks are tiny, their bite painless and many people just don't know, didn't see a tick and many don't have a rash or don't notice one. And many rashes, probably most, are not the bullseye rash. Which doesn't mean they're not from Lyme, it just means we don't know.

When I say that the diagnosis is clinical and the testing isn't reliable, it doesn't mean I agree with the CDC because I think the basis for a clinical diagnosis goes well beyond the narrow list of symptoms that the CDC recognizes and beyond what the IDSA recognizes.

Actually that is what Lyme patients should be aruging, that they don't need a positive test and that their doctors have made a clinical diagnosis and given the current state of knowledge that's enough, and any insurance company that requires a positive test is arguing for something that is scientifically unreasonable and which the FDA has said can't be reasonable in their bulletin.

It is silly to defend a lab or a test when no one here knows enough scientifically to do so and the only real rationale for it is that the lab and the test ostensibly confirm what they believe.

It is a weak lame argument based on nothing. Arguing that our doctors diagnosed us clinically is a strong argument since that is what the literature says and then let someone disprove it. By relying on tests that we don't have any basis for defending other than the self fulfilling prophecy standard, we're buying into the argument that we need positive testing we don't.

Trying to say that I'm a duck or on the CDC side is silly and is belied by all that I've said. I've said I believe in clincial diagnosis. I've said that the two step testing method stinks and is statistically unsound because of the lack of sensitivity of both tests.

Thanks for reading and understanding this martijn.


quote:
Originally posted by Martijn:
Tincup,

You should try to be more tolerant to different points of view and stop trying to ridicule people.

I think Ireallywant2believe is making valid points. I, too, doubt it's a good idea that people send letters to the reporter. One of the problems is that you can't control what people are writing. That's why it would be better if the letters were not send directly to the reporter.

I don't know how good Igenex is, but I do know that it doesn't use a 2-step-protocol and it reports all important Western Blot bands. That is good!
Bowen's Q-RIBb is questionable to me, because (almost) everyone tests positive, which makes testing superfluous.



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Tincup
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Originally posted by Martijn:

--Tincup, You should try to be more tolerant to different points of view and stop trying to ridicule people.

Thanks for the suggestion. I will make an appointment first thing next week for an attitude adjustment... just to please those who are driving people here NUTS.

You see.. SOMETIMES the little monster in me sneaks out when I see folks simply jumping in here once in a while JUST to be kicking others.. often they kick anyone and everyone... in one fashion or another.. with no true purpose in mind other than to disrupt.... or just for the heck of it... or just to cause a controversy.

And... isn't there TOO much negativity in the world to ALWAYS be cutting apart others and their efforts and ideas?

Yes.. if you have a comment.. make it. And TRY to use some manners and respect when doing so if you want others to listen... and you don't want to be tossed outta here by the moderators who are now getting this board back under control by booting out the beasts. You know.. the little trolls?

And if someone has a comment to share here, hopefully it will be based on TRUE fact and some accuracy and others will listen... and it won't be shared in the sour puss fashion like what has been going on here for the past few weeks.

In my opinion... if it is NOT based on fact.. it should be labeled- OPINION.

If it isn't either one.. PLEASE do us ALL a favor and label it, "I'm just whining".. so others can scroll by and NOT be bothered.

And.. with all the world's problems..

WHERE, I ask, is that helping hand when it is so needed? It appears if someone is reaching out for help and comes here... their hand is now getting slapped, instead of held. They are seeing nothing but whining and complaining for no good reason.

That is NOT what LymeNet is about.

If folks need to whine and complain with no purpose in mind other than to get their jollies.. there is a sci-fi site where they can do that. And my bet is.. many folks here will GLADLY provide the link so the board here will get cleaned up again ASAP... so the whiners with no good intentions will hit the road... and we can bid them farewell.

--I think Ireallywant2believe is making valid points.

Somehow I just KNEW you were going to agree.

--I, too, doubt it's a good idea that people send letters to the reporter.

Sometimes folks appear here and do nothing more than cut down other peoples efforts and yet do absolutely NOTHING themselves to fix or improve the situation they are laying around whining about. They don't even TRY... they just cry. I say to those in that situation...

Either poop or get off the pot.

Stop whining and be PRO-active if you don't like what is being done by others about the situation. No good comes from always being negative and never being helpful to anyone... and sitting around whining about what OTHERS should be doing. That is LAZY and MISERABLE at best. It helps no one.

If anyone has a better idea.. I would LOVE LOVE LOVE to hear it... and I will certainly consider it... and be as fair as I can when sharing my thoughts on it. BUT..

Until then.. the slams here are just plain old stupid and a HUGE waste of time... and they serve no purpose.

In MY book... you TRY to do what you feel is best to HELP others.

You aren't suppose to sit around and go woe is me, you are wrong, you should have done it MY way, but by the way, I haven't quite figured out a better plan yet... but I just KNOW your's is not good.... duh.

--One of the problems is that you can't control what people are writing.

You are right! And NOT censoring them means they will be getting letters that are from the heart... from REAL people with REAL concerns. NOT form letters. NOT letters from businesses with an agenda. Letters from REAL people who are TRYING the best way they know how to make a difference.

And THEY (NY Times) will have to take it all under consideration once the letters arrive and THEY will have to chose to do the right thing.. or not. We CAN'T control letter writers... and we can't control what they do. And we shouldn't. THIS is the chance to share YOUR opinion.

Soooooooooooooooo..

Either poop or get off the pot.

We can only TRY and hope to get our point across to them... with the big word being, get off yer butt and TRY!

--That's why it would be better if the letters were not send directly to the reporter.

OK.. How do YOU want to do it? Where do YOU think they should go? Should we send them to Mars first? Have you a BETTER plan to share? Or do you just want to condem this plan over and over... like beating a dead horse??

I am open to GOOD POSITIVE suggestions on how to handle this in some other way... and I am sure others would be too. I am especially interested in knowing what else we can do to help in a positive fashion.. besides this action.

I am NOT open to hearing continual whining and complaining from folks who just want to whine and complain and have NO plans to share better ideas.... as they sit back and bash others for their efforts.

Let's hear YOUR plan for fixing the situation.

Not what you WOULDN'T do.... blah blah blah....

But what you WOULD do!

I PROMISE I will take it into consideration if you bother to come up with a good game plan here. My bet is... others would too.

--I don't know how good Igenex is, but I do know that it doesn't use a 2-step-protocol and it reports all important Western Blot bands. That is good!

FINALLY a positive comment. GREAT!!! I was beginning to think that was a lost art around here these days!

Did you bother to share that good comment with the reporter yet... and offer to support IGenex and the effort.. if for NO OTHER REASON than that ONE you just mentioned?

Or is this just a one time comment never to get anywhere but here?

--Bowen's Q-RIBb is questionable to me, because (almost) everyone tests positive, which makes testing superfluous.

Got a better test? Or will we just all sit here and listen to people crying over and over about they think we have no good tests.. and no good labs.. and everything is wrong with everyone but themselves... blah blah blah?

Where's the beef? I mean, where's the plan?

Again... people need to either poop or get off the pot.

Fix it.. or drop it. If you can't fix the situation.. it's simple.

Just move on to one you CAN handle.

That's my opinion. I am NOT a doctor.. but I do try to think positive and try NOT to make people who need our support more miserable in the process.

And I hope the next person who shows up here to post, either has a GOOD alternate plan to share if they don't like this one.. or they are sending their comments to the people in NY.. as requested.


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Tincup
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HA!

I said..

"And I hope the next person who shows up here to post, either has a GOOD alternate plan to share if they don't like this one.. or they are sending their comments to the people in NY.. as requested."

Icantbelieveanyoneelse said..

"I would say that tincup is wrong."

I guess THAT is our new Plan B.

HA!


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ellenluba
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Hi folks,
I just want to let you know that our letters seem to be having an effect. Please write, if you have not yet done so. Also, if you wrote to the reporter only, be sure to fax a copy to the editors (listed in the first post on this thread).

The article was scheduled to be published this Tuesday. So we are really not going to know what effect we are having until then.

Remember that you don't need to give them scientific facts. The scientists can do that.

We just need to give them our experience as patients. We were all either first diagnosed by Igenex or know many. many people who were AND are getting better as a result of the Lyme treatment.

All we are asking the paper to do is to make sure that the experience of thousands of patients are reported along with the CDC point of view.

Be sure to keep copies of letters you write. I think we will be doing a lot of writing in the next weeks.

We are really generally under assault right now. We had a victory in NY, stuff happening in MA and PA, and a federal billl in the legislature. So we are attracting a lot of gunfire.

Our patient letters are an essential part of stopping this assault.

And we Lyme patients are proving ourselves equal to this fight.
Ellen



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breathwork
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Thank you for the update, Ellen!
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Ireallywant2believe
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It just so happens that I did offer an alternate plan.

I said several times I think that people ought to post their experiences with diagnosis and testing and if that includes positive comments about Igenex, great.

And then LDF or lda or Igenex or whoever ought to forward the threads to the attention of the reporter.

I think that's much better than patients writing directly to the reporter claiming to know what he's going to say before he's said and definitely better than letters bashing the reporter or the NY Times.

Your comments about bashing other people don't apply to me. I haven't done it. I'm offering positive suggestions.

I've been bashed and so have some others here.

And I think that is divisive.

No one is required to agree that my suggestions are great. But no one's required to think that ellen or lda's suggestions are great either.

The notion of everyone writing to try to kill a story is really a bad one. It smacks of prior restraint and believe me journalists don't like that nor do they like being told what to think write or how to do their jobs. Just not a smart approach.

I happen to think my idea is better. You don't have to agree. That's okay. But is it really necessary to make it personal?


quote:
Originally posted by Tincup:
HA!

I said..

"And I hope the next person who shows up here to post, either has a GOOD alternate plan to share if they don't like this one.. or they are sending their comments to the people in NY.. as requested."

Icantbelieveanyoneelse said..

"I would say that tincup is wrong."

I guess THAT is our new Plan B.

HA!



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Ireallywant2believe
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I said that you were wrong when you said people remembered a tickbite. Most people don't.

But I guess it served your point more to take that out of context.

And to ignore the positive suggestions I did put forward.


quote:
Originally posted by Tincup:
HA!

I said..

"And I hope the next person who shows up here to post, either has a GOOD alternate plan to share if they don't like this one.. or they are sending their comments to the people in NY.. as requested."

Icantbelieveanyoneelse said..

"I would say that tincup is wrong."

I guess THAT is our new Plan B.

HA!



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Ireallywant2believe
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The letters seem to be having an effect?

How do you know?

Is the reporter and the editor and the New York times giving you updates on the story they're writing?

That would be a first in journalistic history.

Seriously.

quote:
Originally posted by ellenluba:
Hi folks,
I just want to let you know that our letters seem to be having an effect. Please write, if you have not yet done so. Also, if you wrote to the reporter only, be sure to fax a copy to the editors (listed in the first post on this thread).

The article was scheduled to be published this Tuesday. So we are really not going to know what effect we are having until then.

Remember that you don't need to give them scientific facts. The scientists can do that.

We just need to give them our experience as patients. We were all either first diagnosed by Igenex or know many. many people who were AND are getting better as a result of the Lyme treatment.

All we are asking the paper to do is to make sure that the experience of thousands of patients are reported along with the CDC point of view.

Be sure to keep copies of letters you write. I think we will be doing a lot of writing in the next weeks.

We are really generally under assault right now. We had a victory in NY, stuff happening in MA and PA, and a federal billl in the legislature. So we are attracting a lot of gunfire.

Our patient letters are an essential part of stopping this assault.

And we Lyme patients are proving ourselves equal to this fight.
Ellen



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riversinger
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Ellen, thanks for letting us know how things are going!

------------------
Sonoma County Lyme Support
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Caryn
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i just posted the Intellgencer article where kelly , chief of medicine Abinton hospital and his partner roger neiman are quoted and put down our drs who are willing to give us the long term treatment we need and treat the coinfections we often have.

it is under my post "what i have can help IgeneX" my story is long, so if you just want to read the article, go down to just below where i edited the post on July 10. i will post my full records from nieman on a reply to that post.

i had seen nieman 6 mos before that article came out and had full blown Lyme as well as babesia at the time of the visit, along with the recurring rash on my foot from the '96 infection and he refused treatment.

i posted my long story above that so it may get very tedious to read, but if you scroll down to where it says i edited the post, i posted the Intellegencer article there.

here is what nieman had to say in MY medical records about dr G, the competant dr who diagnosed me with Lyme disease in early 1999, after 8 yrs and 4 untreated infections.:

"At her father-in-law's urging, she saw a physician in Newtown who is a general practitioner who is also a self described expert in Lyme disease. He treated her with a variety of antibiotics including azithromycin, doxycycline and Biaxin.

She also saw another so-called expert in Lyme disease who treated her with a course of six weeks of intrvenious rocephin. However, she still had other problems, particularly including pain in her arms. She continues to see the "Lyme expert" in Newtown and had testing done at a laboratory in California. This laboratory did a non-FDA approved test, the "Lyme urinary antegen test," which is of no known scientific value.

On the basis of these tests he told her that she did indeed have Lyme disease as he had told her previously. She continues to see other physicians including a neurologist and ultimately was sent to our office."
---------------

i will type the whole records in my post regarding helping Igenex with my photos and records. two weeks after this appt, i tested pos by pcr of my spinal fluid from BBI labs. i also have pos pcr's now from MDL and Quest. i have a CDC pos Igm western blot ( but still did not qualify to take part in the NIH study dr Fallon was doing.)

i also, when a dr finnally did the western blot for babesia from MDL, both Igm and Igg robustly pos. it was so obvious i was acutely ill with Lyme and babesia when i saw dr G and even after some treatment still had obvious active infection. i had not been treated for babeisa, or even tested for it.

dr G never represented himself to me a a "Lyme expert". he was reccommended by other lyme patients who were helped by him, and before he got burned by area drs and insurence co's, he used to advertise that he treated lyme and took patients right away. ( not making them wait two months and get sicker and sicker in the mean time like the upenn dr did. and then waiting another month before treating.)

dr G also did not dx me with Lyme on my first visit. he emphasized the need for me to have the LUAT test done at IgeneX labs. the UPENN dr had lead me to believe he had done the LUAT test, but did not have me send a kit myself to IgeneX or follow the protocol of the IgeneX test.

only after the LUAT came back highly highly pos did Dr G tell me that i had acute, late stage lyme disease. whatever Lyme test the upenn drs initially did was pretty useless. it came back neg despite me being so obvious and seriously ill. i think it was an IFA.

i later figured out that upenn dr never did any form of the LUAT what-so-ever. just lead me to believe that he did and lied and said the LUAT had come back neg also, thereby reinforcing that i did not have lyme.

dr G. had me on zithromax only for a few days for the purpose of helping the LUAT to detect lyme antigens. his partner put me on doxycycline, usually the first choice to treat as it will kill the erlichia too if present.

my neuro symptoms were so bad that dr G put me on Biaxin which partially brought my brain back. the neuro he sent me too did not back up his lyme dx, so dr G sent me to a "certified" infectious disease specialist, not another "so-called lyme expert" as nieman wrote in my recoreds. an i.d. specialist just like him.

the i.d. specialist agreed that i had a severe case of neuro lyme when i first saw him and he immeadiately put me on i.v. rocephin. when after 6 wks blue cross/ blue shield would not pay for further i.v. treatment, the i.d. specialist exploded at me , screaming that no one has lyme anymore after 6 wks i.v.. the severe pain and severe symptoms were "in my head". and literally threw my LUAT results in the air calling them useless!

and he sent me to church to get down on my knees and pray. he did give me a script for more biaxin, when crying in pain, i knew i was still VERY sick and unable to function. i had two small children. who i later learned have lyme also.

after that, dr G was unable to treat me as the neuro and the i.d. specialist would not support his dx, the "great" upenn drs found "nothing" neuro wrong and to further treat me would likely lead to his being charged with "over diagnosing and overtreating". so he gave me a list of drs.

most did not take insurence, but the neuro on the list did so i went to him. he for the most part did not treat me, did not test for babs even though i stronly suspected it. spring '2000, i am pretty sure is when i found photos of me with the textbook bullseye rash dating back as far as sept '91 on our vacation to Nantucket Island.

the neuro did not know i was going to see nieman and just before, had done a spinal tap and had my spinal fluid tested by pcr and it came back pos. the results from that pos pcr of my spinal tap i recieved just two weeks AFTER seeing nieman and him calling the LUAT, my only pos up til then "of no known scientific value".

it would be another 6 mos after the pos pcr of spinal fluid before BC/BS would OK a few more weeks of rocephin and then cut off my treatment again leaving me feel hopeless.

i was also seeing Dr Sergott at Wills eye hospital. Dr Sergott is not well educated about lyme, never-the-less, he is a good eye doctor and did the exam seriously instead of just laughing and not really doing an exam as upenn neuro-opt did. upenn found "nothing" neuro wrong, but dr Sergott did find that i was having trouble controlling my eye muscles and reccomended further treatment for my chronic neuro lyme disease.

i had also seen a sleep specialist who dr G sent me to and his partner who did not help me and put damaging stuff in my records.

Dr G also sent me to a rhuemie , who lets just say was creepy, and i had a very good reason not to go back to him.

i needed to see other specialists, but was not. i still need a good G.I specialist, OB/GYN and general practitioner. as you can see, i need to be very careful who i go to as many drs just abused me, refused medical care and put lies in my records to interfere with me getting med treatment in the future.

i ended up at nieman's office, because a dr friend of my in-laws claimed for him to be "the best" lyme disease expert in the area and i was still suffering so badly. you would not leave an animal in that condition. i think we know different now. and nieman did represent himself to me as a "lyme expert".

i also, after a dr finnally ordered the brain spect scan at Columbia Presbyterian Hospital in NYC, have an abnormal brain spect scan showing blood hypoprofusion, white matter lesions, and encephalopathy consistent with Lyme encephalitis.

and, after learning from this website from another woman just a few yrs older than me, that many woman who have been ill and untreated for late stage lyme for yrs go on to suffer bone deterioration and she was just dx with severe osteoporsis and was only 44.

this was a few yrs ago. because of how loudly my bones cracked and how little i had been able to eat so little, i had asked the upenn internest to do a bone scan. he refused and laughed and said i was much too young and would not order the test.

well, when a dr finnally did do the bone scan it revealed severe osteopenia. there are drugs to stop and even reverse bone loss. upenn could have caught this several yrs earlier, if they were as knowlegable about lyme as they alleged to be.

[This message has been edited by Caryn (edited 11 July 2005).]

[This message has been edited by Caryn (edited 11 July 2005).]


Posts: 1091 | Registered: Nov 2000  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
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Well looky here!

Looks like your efforts worked and turn the tides!

The NY Times has decided to KILL the article!

GREAT JOB YOU GUYS!!!!

I am so tickled. See what we CAN do when we work together and TRY!

Here is a post to share more news about the great job you did!

Someone else wants to thank you for your efforts!


http://flash.lymenet.org/scripts/forumdisplay.cgi?action=topics&number=1&SUBMIT=Go

YIPPEE!!!!


Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
   

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