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» LymeNet Flash » Questions and Discussion » Medical Questions » URGENT ACTION NECESSARY: FORBES DEFAMES LLMDs!!

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Author Topic: URGENT ACTION NECESSARY: FORBES DEFAMES LLMDs!!
Mo
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CALL TO ACTION 2007 #2 (Feb. 25)

from Pat Smith, President, Lyme Disease Association, Inc. (LDA)


IMMEDIATE ACTION NEEDED

Lyme Physicians Defamed!


WHO: Everyone!
We need 1,000 email letters to go to Forbes now!

WHAT: Contact Forbes.com

WHERE: You can use any of the following contact methods:


1.Contact form (click the link) http://www.forbes.com/story/mag/comments_form.jhtml?title=The

2.Email link (click the link) editors.

3.Email to (click the link or cut & paste email address) [email protected]

4.Call 212-366-8900

WHEN: As soon as possible!!

WHY: A serious personal attack has been made on our Lyme treating physicians. The Forbes.com article ``Ticks aren't the only parasites living off patients in borreliosis-prone areas,'' presents a biased viewpoint, a blanket condemnation of Lyme treating physicians as profiteers and worse. We cannot allow these charges to go unanswered. The physicians who have the courage to treat patients despite the obstacles they face from medical boards and insurers, jeopardizing their careers, do not deserve to be portrayed in this manner.

The article also places them at greater risk from those quoting this article or those believing it to be true. Bottom line, we need our physicians to be able to treat without this kind of unwarranted, unsubstantiated attack from a supposedly reputable publication.

We want to get 1,000 emails to Forbes ASAP.

(for article, click link & then sign in http://members.forbes.com/forbes/2007/0312/096.html)

ACTION (500 words is all Forbes will accept) Take 5 minutes to defend your treating doctors!

1.Use the following information and write your own letter if possible.

2.If you cannot write your own, highlight, copy and paste this letter in the email.

3.Your name, address must be on letters or Forbes will not accept them.

4.Do not use ANY physician name(s) in the letter.

SAMPLE LETTER (382 words)

I'm deeply disturbed that Forbes' magazine would purposely print a one-sided and inaccurate article which tries to paint a picture of doctors who treat chronically ill Lyme disease patients as individuals whose main goal is to make a profit.

My experiences with Lyme treating physicians do not reflect that picture. These doctors often see patients for two hours or more on the initial visit and a 1/2 hour or more otherwise. The reason for this visit length is the complex nature of Lyme disease which is often accompanied by one or more additional tick-borne diseases such as babesiosis and anaplasmosis. The prices they charge are not any different and are often less than any other specialist charges on an hourly basis. The number of patients they can see in a day is often less than conventional physicians who see their patients at 10-15 minute intervals.

These same dedicated physicians spend much of their free time attending conferences and providing programs for the public and other physicians on Lyme disease since there is very little accurate information in mainstream medicine. Additionally, they are burdened with helping patients fight the bureaucracy of treatment reimbursement for a disease where biased science is the accepted "standard of care." They also have a long history of helping patients regain their health or they wouldn't be in such demand and have long waiting lists.

The worst insult is the fact that on a daily basis, many of these doctors are dealing with medical board harassment because a handful of their peers have decided that chronic Lyme patients should not be treated for their ongoing infections and all treatment should be stopped at an arbitrary cut off point, whether the patient is well or not. Research studies have proven Lyme disease to be a chronic, disabling disease if not properly treated.

Something is wrong when very sick people are abandoned by the medical profession and when infectious diseases specialists deny medical treatment, insurance companies deny reimbursement, and medical boards harass our treating doctors. Something is terribly wrong when Forbes prints an article without exploring the entire picture and learning where the real vested interests lie. When the interests of insurers drive medical societies, the health care of our citizens is being sold to the highest bidder. When a major medical society sides against patients, Forbes should be asking why, not joining in against the patients. Name, Address, Email


Alert From:
Pat Smith
President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 Toll free info line
732-938-7215 (F)
LymeDiseaseAssociation.org

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Mo
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copy of article,

remember...DO NOT use doctor's names in your responses.

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

Health

Lyme Inc.
David Whelan 03.12.07

By This Author

David Whelan

Ticks aren't the only parasites living off patients in borreliosis-prone areas.

Three years ago Heather Jenkins, a 30-year-old mom in Huntersville, N.C., was constantly fatigued and prone to colds. Her internist referred her to Dr. Joseph Jemsek, a self-described "Lyme Literate" doctor. During the initial consultation he asked if she had been bitten by a tick or gotten a rash. No, she replied, but she had gone camping once in Tennessee. He suggested she may have picked up Lyme disease there and sent her blood to a California lab that specializes in tests for tick diseases. A week later the test results came back: She had been infected by Borrelia burgdorferi, the spirochete that causes Lyme disease.

Jemsek installed a tube in Jenkins' arm and every two weeks for a year and a half sold Jenkins a $3,000 course of Rocephin, a powerful antibiotic, to infuse on her own at home. When she developed infections around the catheter in her arm the nurse would switch it. When her arms wore out she got a port implanted in her chest. As she waited for Jemsek to treat her latest infection, she collapsed on the floor, vomiting. Drug-resistant bacteria had overtaken her entire body. Jenkins landed in a hospital intensive care unit for four weeks, barely surviving. A doctor at Carolina Medical Center, where she recovered, told her that their labs could find no evidence in her blood that she'd ever had Lyme. "I was outraged," she says, and is now suing Jemsek. The near-death odyssey cost her insurance company $400,000. The action is pending, and Jemsek has made no comment.

Lyme disease, with 20,000 cases reported annually, ranks low on the list of the most prevalent infectious diseases. But it ranks first in rancor generated in the medical community. The disease is caused by bacteria related to syphilis that enter the body through a tick bite. The typical Lyme infection responds to simple antibiotics, although symptoms like arthritis and fatigue may linger in a subset of patients. Researchers at academic medical centers who study the disease say that so-called chronic Lyme, or post-Lyme, is very rare, hard to detect and not treatable with any further doses of antibiotics. The mainstream doctors warn about an epidemic of bunk diagnoses and dangerous treatments. Insurers often refuse to cover the cost of treating chronic Lyme.

Arrayed against the establishment is a fraternity of Lyme specialists, many of whom have built large practices treating ostensible Lyme patients with expensive courses of antibiotics.

Last year the North Carolina state medical board brought Jemsek in for a disciplinary hearing. Ten patients testified to nightmarish experiences. A widower said his wife had died from a morphine overdose related to Jemsek's Lyme treatments. Jemsek disputed all the charges vigorously. He also had 200 supporters show up, many of whom believe he cured them of a terrible disease. The Lyme Disease Association, a group that supports Jemsek, says that 30 chronic Lyme doctors have been similarly targeted by medical boards. Jemsek ultimately received a "suspension with stay" that allows him to keep practicing.

The light penalty may reflect the power of Lyme support groups, which blast politicians with mail and phone calls to ensure their access to expensive care. Standing with them now is Connecticut Attorney General Richard Blumenthal, who has received awards from Lyme groups and late last year announced that he was investigating the Infectious Diseases Society of America, an 8,000-member organization of doctors trained to understand diseases like AIDS, malaria and tuberculosis. Their crime? Issuing Lyme treatment guidelines to doctors that warned against using long-term infused or oral antibiotics.

Blumenthal, who hasn't yet issued any lawsuits in the case, says that the IDSA's guidelines may be in violation of antitrust laws. "Lyme disease is an extraordinarily insidious and widespread problem in Connecticut. We want to make sure that patients and physicians have unfettered choices," he declares. Insurance companies, he goes on, may be colluding with the IDSA to deny care. It's an odd charge, since a 1996 policy statement from the Federal Trade Commission and the Department of Justice says that treatment guidelines issued by medical societies do not limit competition. "You want medicine to advance by debate, not hampered by lawsuits," says Robert Buchanan, a medical-antitrust attorney in Boston.

Despite intimidation from elected officials like Blumenthal, the establishment has scored some hits against Lyme specialists. In 1993 Vithaldis Shah, a New Jersey doctor, had his license yanked for five years for sickening Lyme patients with long-term antibiotic treatments and receiving a payment from the infusion company. In 1996 a doctor in Michigan was suspended after conspiring with a home infusion company and misdiagnosing Lyme patients. In 2000 a study described the death of an anonymous woman from complications arising from treating unsubstantiated Lyme with antibiotics.

In Connecticut Dr. Charles Jones, a pediatrician, is under investigation by the state medical board for prescribing, over the phone, antibiotics for chronic Lyme to two children in Nevada, a desert state with few ticks. Jones, who pulled up to a June hearing in a stretch limo to the cheers of fans, has testified that he did not finalize a Lyme diagnosis until he saw the children in person. Since the hearings began, more upset patients have joined the action against Jones. Blumenthal, however, has criticized the medical board for its investigation.

Mainstream doctors say their guidelines are based on scientific evidence. An early study identified 25 patients with gallstones or bile blockage resulting from antibiotic treatment of unsubstantiated chronic Lyme. A more recent study of infused antibiotics published in the New England Journal of Medicine was cut short after Lyme sufferers with persistent symptoms did not respond to a course of antibiotics any better than they did to a placebo. One patient getting antibiotics had a pulmonary embolism; another had gastrointestinal bleeding.

Another paper in the Annals of Internal Medicine calls chronic Lyme a "functional somatic syndrome," similar to other nebulous ailments like Gulf War Syndrome, chronic fatigue and fibromyalgia. Another study in the same journal found that 60% of Lyme disease patients lacked any evidence of previous or active Lyme infections. Some of these patients suffered from depression, arthritis or other diseases. "There are lot of people who have fatigue or musculoskeletal pain. We want to help them but not with long-term antibiotics," says Dr. Gary Wormser, an infectious disease expert at New York Medical College who helped write the guidelines that prompted Blumenthal's attack. After the latest idsa guidelines came out in November, Wormser and his Valhalla, N.Y. lab were the target of a protest attended by hundreds of chronic Lyme patients and supporters; one sign said "Wormser Lies ... Patients Die."

Many of the chronic Lyme patients are upset that their insurance companies won't cover unlimited treatments. WellPoint (nyse: WLP - news - people ) will pay for only four weeks of IV antibiotics, citing published peer-reviewed studies. But science is no match for the Internet, where Lyme patients swarm chat boards to bemoan the persecution of their doctors and egg on politicians. Some celebrities have joined in the fray, such as novelist Amy Tan and Daryl Hall of rock duo Hall and Oates, both of whom say they suffer from chronic Lyme.

Tan's doctor is Raphael Stricker, president of the International Lyme & Associated Diseases Society, which represents chronic Lyme doctors and patients. Stricker's San Francisco clinic also advertises its ability to treat obesity, infertility, erectile dysfunction and AIDS. In 1990 Stricker was forced out of UC, San Francisco after the school claimed he falsified data in what had been a seminal AIDS study. Before he discovered Lyme he spent two years as associate medical director at a penis enlargement clinic.

Stricker and many of his chronic Lyme allies send their blood tests to a California lab called Igenex, which was once investigated by Medicare and the state of California for pumping out too many positive tests. Nick S. Harris, chief executive of Igenex, says he passed both investigations easily, but in 2001 the federal Office of the Inspector General put Igenex on a list of noncompliant labs. It paid fines totaling $48,000. Harris says his firm has had no recent brushes with regulators. Harris says that his tests are more sensitive than ones given by lab giants Quest Diagnostics (nyse: DGX - news - people ) and LabCorp, yielding positive results 25% of the time. The big national labs typically return positive results 8% of the time. He acknowledges that his results are more open to interpretation, which could facilitate more positive diagnoses. "Patients, because of the Internet, have become my best salesmen," Harris says.

Jemsek, who in 2005 collected $6 million from Blue Cross Blue Shield of North Carolina, is still practicing, having declared his earlier practice bankrupt. He opened a new cash-only practice, spending $8 million on a building with a waterfall and grand piano. On the Internet patients exchange tips about how to keep seeing him. In his statement to the medical board after the stayed suspension of his license, Jemsek, who declines to be interviewed, said: "I've got 400 letters of support here, many single-spaced and several pages long."

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Mo
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no, i won't delete it.

i was asked to post this, in this way. we need 1000 emails, asap, and a thread with clear direction on action to take and the requested community response.

please keep this thread clean, and just check in with a "yes i wrote" - or something to that effect.
(ie: you don't have to post your letters here, unless you'd like to, or to share a talking point.
this thread isn't intended so much for discussion as i see the other is for)

mo

[ 25. February 2007, 05:14 PM: Message edited by: Mo ]

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kelmo
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I wrote
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Melanie Reber
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OK, so I am confused [Roll Eyes]

Is this the email to send our replies directly to???

[email protected]

thanks in advance,
M

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Ann-OH
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At the end of the article as sent from Robyn, it said:

Comments to the Editor online form:

http://www.forbes.com/story/mag/comments_form.jhtml?title=The

Author David Whelan is with the Silicon Valley Bureau, Forbes.
Contact Information
E-mail: [email protected]

Ann - OH

--------------------
www.ldbullseye.com

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Melanie Reber
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Thank you Ann, I sent it to both places [Smile]
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Ann-OH
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Melanie, I saw the copy of your letter posted elsewhere or somewhere. It was really really good!
Ann

--------------------
www.ldbullseye.com

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Melanie Reber
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Thank you Ann,

I'm not firing on all pistons but I did my best.

PLEASE, everyone, just send in something.

M

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ellenluba
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In all the years I've been involved with Lyme activism, this is really the most destructive article I've seen.

I know people get overwhelmed and sometimes avoid threads like this. I wish there was some way to get every single Lyme patient to read this article and write a letter to the editor.

Short of making home visits, I'm not sure how to do that. So second best is for us to keep eough posts on this thread so that EVERYBODY starts to read it.
Ellen

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


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Mo
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yep.

i still think it is so outrageous it is an opportunity for us.

all it takes is a large number of responses based in reality, morality and a little science to shed light on how horrifying this kind of view, or rather attack, is.

someone told me this is the kind of rediculous response that stirred around polio and aides.
health/business opression has reared it's ugly head before.

all it takes is the mass of voices of the sufferers to show the atrocities. the bottom line is so much clearer when you see articles like this and how baseless they are.

this is an opportunity we shouldn't miss.

we need 1000 emails asap.

mo

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minoucat
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I wrote, lamebrained as I am.

--------------------
*********************

RECIDITE, PLEBES! Gero rem imperialem!
(Stand aside plebians! I am on imperial business.)



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dontlikeliver
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I have written.
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Robin123
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Done!
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Walnut
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I wrote and also sent a polite note to David Whelan.
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TerryK
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Done.
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Mo
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up
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3greatkids
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Parasites?

This is bottom feeding at its worst.

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Mo
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up
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AlisonP
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A copy of my letter to Forbes:

I am writing in response to your article attacking doctors who treat Lyme disease.

Antibiotic resistant bacteria are not created by treating Lyme. Lyme itself *is* the antibiotic resistant bacteria. This is why it's so difficult to treat. It's a very simple concept.

Despite being treated with antibiotics, I have a poisitive Lyme test that shows, even by the CDC's rigid surveillance criteria, that I still have an active infection of Lyme. Had the author done diligent research, he may have discovered that I am hardly an anomaly.

What confuses me also is that if we are to believe this article, Lyme should be very easy to treat. Why then, is the very same Lyme disease being openly studied as an agent of biological warfare by the U.S. government? That is highly illogical. One would think that if Lyme was so easy to treat with readily available antibiotics, it would make a lousy agent of biological warfare. Hmmm.

It is also my understanding that to be a journalist, one must look at all the evidence. Utilizing only some of the evidence in an article whilst ignoring other evidence is not journalism -- at best, it is biased, myopic reporting more appropriate for such venues as public relations or marketing. At worst, it is a shameful and dangerous smear campaign, which begs another question: Why is it so important to prevent people who are devastated by Lyme to get appropriate treatment? Why is it so important to prevent people from finding out that they are infected with Lyme in the first place?

After one year of antibiotic treatment, I am finally getting my life back and no longer in so much pain as to wish often for the sweet release of death. I do not exaggerate.

I would also like to add that my two sisters and brother have also tested positive for active Lyme infections, despite also having previous short courses of antibiotics in the past.

I am surprised that a publication such as Forbes would allow such egregious breaches of simple journalistic integrity in their published material. With such a lack of facts, research and perspective (oh and let's not forget the ridiculous name calling), this article is more suited as a press release for an organization that wants to keep people sick.

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

The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow

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Anneke
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my husband wrote a letter on my behalf!

Anneke

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Mo
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some really excellent letters are being written here!

the following is Pat Smith's response (LDA):

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

As the president of an all volunteer national Lyme disease patient group, I
read your article on Lyme treating physicians being profiteers at the expense
of Lyme disease patients with dismay and disbelief.

Not only have you done a
disservice to those doctors courageous enough to treat this political
disease, but you have also done an injustice to patients, an injustice which
could
cost them their life saving treatment.

If you are wondering how that is possible, it is indicative of the lack of
homework your reporter has done on Lyme disease, the most prevalent
vector-borne disease in this country. You have allowed your publication to be
sucked
up into the unsettled science, the politics, and the vested interest of Lyme,
yet you have not explored any of those areas enough to understand the issue
at all.

If Mr. Whalen had done his job, he would have realized that medical
societies that hold the interests of their patients paramount do not wage war
against
patients. When they do, society should ask why.

He would have presented
how the doctors he portrays as the experts and the underdogs could have a huge
vested interest in the disease, and how these same physicians are primarily
researchers who have relatively minimal experience with Lyme disease patients.

In fact, they do not believe in chronic Lyme disease, so certainly they
cannot be experts in that area.
Coming from that perspective, they have formed a closed club of like-minded
individuals who have banded together to shut down all patient treatment for
this seriously debilitating disease.

How do they do that by excluding input
from all who are stakeholders in the process, the patients, treating
physicians, even their own infectious disease colleagues who disagree with
them.

The IDSA contends that its recommendations are not binding on physicians.
This is simply not true. If the IDSA had wanted it guidelines not to be
binding it would have acknowledged that different treatment options exist and
deferred to the clinical discretion of the treating physician.

However, this
group of researchers has the arrogance to presume that neither patients nor
their treating physicians are competent to make medical decisions. Restrictive
guidelines like the IDSA's play right into the hands of insurers and government
agencies that do not want patients to get treatment because it is too costly
for CMS (Centers for Medicare and Medicaid Services).

With Forbes blessing, the restrictive IDSA Guidelines that are signaling a
death knoll now for Lyme disease patients, will tomorrow become the guidelines
that signal the death knoll for patients with other difficult to diagnose
diseases.

Forbes ignorant sensationalism of the Lyme disease issue is a sad
commentary on the dissolution of once ethical media that has chosen to align
itself with medical entities driven by vested interest and to splatter
mud to increase its sales at the expense of tens of thousands of sick patients is a
cheap trick more suited to a supermarket tabloid than once reputable Forbes.

Pat Smith
President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 Toll free info line
732-938-7215 (F)
LymeDiseaseAssociation.org

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FightFireWithWater
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Excellent response, Pat! Thanks for all the great letters, Lymenet posters!

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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seibertneurolyme
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AlisonP,

A great letter!!!!!

Bea Seibert

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humanbeing
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Sent my two cents today....

--------------------
We are spiritual beings on a human journey...

www.ruggierogallery.com

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AP
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If there is someone named Andrea that is calling Mr. Whelan and leaving voicemails, good going... He's "ticked" off.

I share the name and keep emailing him, he just responded with, "are you the same Andrea that is leaving me voicemails?"

Keep 'em coming.

--------------------
Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

Myspace: http://tinyurl.com/5p64ed

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Mo
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we should probably be careful not to contact him with more than the letter responses to the content of the article.

that could be twisted and misconstrued by the reporter as "harassment".

mo

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Ruth Ruth
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Sent:
~~~~~

Dear Forbes,

Your "Lyme, Inc." article does not accurately portray the incredible sacrifices and dedication of the few doctors willing to treat the people who have been turned away without treatment based upon a narrow definition of illness.

The doctors I have personally seen or corresponded with are offering care at great personal cost and do not even charge the normal rate for their time.

I am not sure where your writer obtained his information but I am sure that his bias is hanging out like a flaming red flag! The article reads more like a hit piece than anything else. Did someone interested in hurting those of us who are victims of a very difficult, puzzling disease pay him to do this--to the only people trying to help us--the LLMDs? How disturbing.

My HMO follows the standards that narrowly define Lyme disease as not easily caught (therefore I don't have it). This is saving them a lot of bother. They don't have to address my symptoms as having a basis in a single infection. They can simply treat each symptom as it appears and have no concern that I am not getting well! My current assessment of this approach is that treating the symptoms will cost the HMO a great amount of money spread over many years. But for now, the head in the sand approach has not become an obvious hit to their bottom line.

As a periodical addressing the financial side of things, a very helpful article to publish would be the cost of untreated chronic illnesses.

I hope you will consider covering this in the future.

--------------------
When I lost my grip on Faith in the maze of illness,
Hope gently clasped my hand and led on.

RuthRuth

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lou
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I agree. Anyone who can be portrayed as harrassing this guy will be smeared, as a crazy lymie. Don't give them any ammunition. Make it clear that they are dealing with responsible law-abiding good citizens, even though it is obvious Whelan and Forbes are none of these things. Don't stoop to their level.

Getting in a stinking contest with a skunk is never a fair fight.

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Mo
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"Getting in a stinking contest with a skunk is never a fair fight."

that has to be my new all-time favorite quote. [Smile]

please everyone write a letter to Forbes on this article asap.

i think the letters are fantastic and it's cahtartic for me to them all and see what a strong message we all have.

mo

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WildCondor
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Great response Pat Smith!
This is an outrage!
Everybody must stand up for themselves NOW! Write/email/call NOW!!!!!!!!!!!

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sizzled
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We should demand an open-to-the-public debate between the LLMDs and the IDSA people.

Respectable, scientific, and credible.

Open debate.

Debate.

Debate.

Debate.

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Mo
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yes. make it public. write.

mo

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sizzled
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We should rent a town hall.

DEBATE!

Will they come?

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SuZ-Q
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Letter sent!
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Mo
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look at all the great points being raised in these letters.

i doubt they have real answers for any of them, hence the swift boat campaign tactics with Forbes.
they could never support thier position in a debate arena. it's beyond rediculous.

mo

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FightFireWithWater
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How about Bill Moyers as moderator for the debate on Lyme?

Even people who disagree with his politics generally admit that he is an extremely fair-minded person.


(I was however disappointed with Moyer's successor's coverage on PBS' "Now" of the controversy surounding the HPV vaccine mandate.

He failed to explore in much depth some of the major objections to the project such as the new vaccine's lack of long-term use needed to establish its safety.)

[ 07. March 2007, 02:58 PM: Message edited by: FightFireWithWater ]

--------------------
"Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today!

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Mo
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please get your letters in!

mo

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nikkib
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Sent!
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caat
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Concerning your article "Lyme Inc."
by David Whelan 03.12.07

Do you have any idea what people with any form of bacterial *aseptic* meningitis or subacute encephalitis go through to get ANY treatment at all? Any idea of what damage it can cause?

This article is not only one sided but has the same ultimate moral standing as if it were written about private doctors who were actually *treating* syphilis in the early 1960's.

If your publication could produce a well researched article about both sides of this political disaster then perhaps your information might be of some use to society. Perhaps people would someday be able to go to their regular doctors and expect to get treatment for their brain infections!

I realize that Forbes is a financial publication, but I certainly hope this bias is not completely concious on Forbes' part.

regards

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Mo
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has everyone taken the time to give whelen and forbes a piece of their mind?

mo

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