Read this article! Read it and then write a smart response to: [email protected] Then cancel your prescription.
WE CAN NOT AFFORD TO SIT AROUND TALKING ABOUT HERXES AND DOING NOTHING ABOUT EDUCATION AND LYME ADVOCACY WHEN ARTICLES LIKE THESE ARE CIRCULATING IN OUR COUNTRIES MAJOR NEWS SOURCES. This article is a total hack job, and we need to respond to it, and respond to it IN MASS. WE MUST BE HEARD.
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."
Posts: 364 | From California | Registered: Sep 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
PLEASE DISSEMINATE:
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:
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.
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 am 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. Your Name Your Address Your email -------------------------------------
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
This is just awful. Talk about spin. I am almost speechless after reading that piece of filth, and I feel like I need to go take a shower now.
The sample reply letter is excellent. Thanks for helping those of us with Lyme brain to get focused.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
My letter:
Mr. Whelan did an excellent job of writing a one-sided article in favor of the IDSA.
Might I suggest he contact either the Lyme Disease Association www.lymediseaseassociaton.org or ILADS at www.ilads.org to get the other side of the debate and write another article.
Presenting half the truth is deceptive. Mr. Whelan has been deceptive in his presentation of Lyme disease.
Arrogance mixed with ignorance is a dangerous mix. Lyme disease is a fairly new illness that is very complex. No one knows the best test to detect the organism or has the best protocol for treating the disease. The ILADS doctors admit this and try their best to care for their sick patients. The IDSA doctors largely dismiss patients once they've been treated according to their guidelines....to the detriment of the patient.
Sir William Osler, the founding father of modern medicine stated "If you listen long enough, the patient will give you the answer."
Thank God for doctors who do listen to their patients and try to help.
May I suggest that Mr. Whelan and the editors listen to the replies of Lyme patients who are outraged by his article. May Mr. Whelan accept the challenge of writing an article presenting the opposite viewpoint. May he also consider printing stories of actual lyme patients who suffer from the disease.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I read this morning an article which dismayed me for its poor journalistic quality. This article espoused the viewpoint of a set of doctors who have been ignoring research standards for their own undisclosed agenda.
I am a speech and language pathologist in southeastern Wisconsin. In pursuing my license to provide valid therapy for my students, I was required to take classes in research methods. A basic in research standards is to examine closely and vigorously both sides of a course of study to find the truth in the etiology and treatment of disorders. This basic is true in all avenues of research, including medical.
The viewpoints of the IDSA, which your article is a mouthpiece for, are not well researched. They are ignoring a huge body of research study which refute theirs.
To ignore crucial research is not only unethical but also harmful to those who would be otherwise treated effectively by the medical profession for a disease well documented by researchers.
Research indicates that borrelia burgdorphi, the bacteria responsible for lyme disease, is a very responsive organism which is difficult to find in the current laboratory tests. The Elisa test is very unreliable. The Western Blot is better, but is also unreliable. The Elisa is mistakenly used by most medical doctors as the defining test for lyme disease, which is where treatment fails. Because if the Elisa says you don't have lyme, then you don't get treatment. Even in the common circumstance that clinical signs indicate the existence of lyme in a patient.
In my case, I was exposed to ticks last spring at our summer home in northern Wisconsin. I developed a strange rash on my leg, which later became terrible joint pain which had me crying in pain for relief. I had five Elisa tests, all of them negative. Later, a Western Blot indicated some exposure to the borrelia organism. Another several months later, another test corroborated the exposure further.
The Elisa test needs to be vigorously examined for its efficacy. The IDSA reliance on it as a diagnostic tool is suspect as it is seriously flawed.
The IDSA itself is flawed and Richard Blumenthal is absolutely correct for investigating its ethical standards. I do not know what the IDSA agenda is; all I know is it routinely ignores important research that refutes its stance that the Elisa is a reliable diagnostic tool and that lyme disease is overdiagnosed (based on this diagnostic tool).
I ask of you that you spend a little more time looking scrupulously at both sides of the issue. Insurance companies are using this "research" as the only source for prescribing standards of care, resulting in sheer destruction of the health and lives of unfortunate people whose only error was to spend times outside exposing themselves to a very adaptable bacterial organism.
Cheryll L. Nelson, Speech and Language Pathologist, MS University of WI - Whitewater 1318 Vine Street .......
Posts: 48 | From Wisconsin | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
This is very important- the worst article since "Stalking STeere!"
I wrote two letters. The first version of the first letter was filled with YOU IDIOT but I erased those before sending it (it helped to write it that way though!!!!).
They went after Doc S from SF big time at the end. He saved my life. He is an angel!!!
I know it is awful, but I hope this reporter gets bitten one day and gets Lyme- he deserves it!!! He needs ENLIGHTENMENT!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Uh oh. That's why writers should write objective material. Not only Lyme patients, but it also ridiculed CFS and Fibro patients, as saying it's psychosomatic. (they might get emails and letters from those, as well). I'm not really upset that he wrote this, because I ignore people who are ignorant yet opinionated on a subject. I'll just continue to treat and get better(soon I hope) I tried to call and cancel my subscription last night, but phone lines are down at Forbes(due to storm?).
-------------------- Never walk through a cornfield backwards.
At the bottom of the article Mr whelan also includes his email address. I wrote him a NON threatening letter asking him to be more responsible in his writtings. Also I questioned him as to why he would be so bias against Dr Jemsk and not mention his accompishments.
I think it would be nice if we gave him our perspective as well, with kindness of course.
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
Yes, I think everyone should blow off some steam before sending their letters. Anyone who comes across as threatening and abusive will just help them make the case that lymies are nuts.
Run around the house screaming, throw darts at a board with his picture (or Forbes')on it. Then when you can think rationally again, write your letter.
What kind of creeps attack sick people? Couldn't help saying that, but it wasn't in my letter.
Posts: 8430 | From Not available | Registered: Oct 2000
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Comment Sent: ___________________________________________ To the Editor:
David Whelan's article was a shock this morning, but not so great a shock as Forbes' decision to print such drivel.
Mainstream doctors who are ignorant in the evolving science of lyme infection will puff their chests and feel vindicated.
Whelan fails to mention that there are in excess of 22 peer-reviewed studies documenting the ability of the lyme bacteria to persist, despite repeated courses of antibiotics.
The IDSA incredibly dismisses all of these studies in blanket fashion, declaring the results must have been "cross contamination" in the various laboratories. Uh, yeah.
How much easier it is for doctors and pundits like Whelan to continue in their weary denial than to take the time to actually read the research.
Even the conservative Hopkins University recently declared the ELISA a useless diagnostic test. Other studies demonstrate a failure rate of up to 70% in detecting lyme infection.
Our lyme doctors are few and under constant attack. Mine was far less expensive than the neurologist who refused to consider lyme in spite of overwhelming symptoms and a CDC positive test. Instead, he diagnosed me with MS -- far easier than learning about something he was uncomfortable with, thanks to disinformation such as the Whelan article.
Over half of all lyme patients are children. For an intelligent doctor, there is little that is mysterious in their presentation. My own daughter, 15, had horribly painful knees following many tick bites. She tested CDC positive for lyme, recovering after several months of antibiotics. Despite this, six months later it returned with a vengeance, paralyzing half of her face. This is called "persistent infection," not post-Lyme syndrome. It responds to re-treatment.
Apparently neither Whelan nor anyone at Forbes has suffered from chronic lyme disease. If he did, I expect his tune would change dramatically.
Whelan's article is an incompetent and dangerous disservice to not only lyme patients but to science.
Michelle Mahood
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
How about we systematically, paragraph by paragraph, or line by line, take apart this author's misinformation (I'm being generous with that adjective)
We should have our talking points ready and rock solid, with supporting evidence as needed.
For one thing, I find it interesting that the author never notes that Dr. Jemsek is a board certified infectious disease specialist, and himself a member of the IDSA. And he's an expert in AIDS.
The article reads like a hit piece. I wonder what were the author's motivation.
Posts: 211 | From NC | Registered: Dec 2005
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posted
I suspect David Whelan is a member of the Society of Professional Journalist. We might ask him if he thinks it's important to adhere to their code of ethics, http://www.spj.org/ethicscode.asp?
"The duty of the journalist is to further those ends by seeking truth and providing a fair and comprehensive account of events and issues."
"Fair and comprehensive"? Not this lyme article. More like tawdry tabloid hit pieces.
Mr. Whelan needs some help in his journalistic skills, at least when it comes to reporting on the very complex topic of Lyme.
Posts: 211 | From NC | Registered: Dec 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I am going to have to punch some pillows before I write my letter
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
copying this from ACTIVISM! i posted this also in general's topic there and OFF TOPIC. bettyg
QUOTE]Originally posted by jblral:
CALL TO ACTION 2007 #2 ( Feb. 25)
from Pat Smith, President, Lyme Disease Association, Inc. (LDA)
WHERE: You can use any of the following contact methods:
1.Contact form (click the link) __http://www.forbes.http://wwwhttp://www.fohttp://www.http://www_ (http://www.forbes.com/story/mag/comments_form.jhtml?title=The_) (_http://www.forbes.http://wwwhttp://www.fohttp://www.http://ww_ (http://www.forbes.com/story/mag/comments_form.jhtml?title=The) )
2.Email link (click the link) _editors._ (mailto:_readers@..._ (mailto:readers@...) )
3.Email to (click the link or cut & paste email address) __readers@Forbes._re_ (mailto:_readers@...) _ (mailto:_readers@..._ (mailto:readers@...) )
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-in borreliosis-prone areas, presents a biased 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 .
We want to get 1,000 emails to Forbes ASAP. (for article, click link & then sign in __http://memb_ (http://memb/) ers.forbes.com/ers.forbes.cers.forbeers.forbe_http://members.http://membhttp:/ /membehttp://mehttp_ (http://members.forbes.com/forbes/2007/0312/096.html) ) ) ACTION ( 500 words is all Forbes will accept) Take 5 minutes to defend your
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 am deeply disturbed that Forbes's magazine would purposely print a one-sided and inaccurate article which tries to paint a picture of doctors. 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 30 minutes 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
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
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 .
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
Something is terribly wrong when Forbes prints an article without exploring the entire picture and learning where the real vested interests
When a major medical society sides against patients, Forbes should be asking why, not joining in against the patients.
show your Name, Address, Email
Pat Smith President Lyme Disease Association, Inc. PO Box 1438 Jackson, NJ 08527 888-366-6611 Toll free info line 732-938-7215 (F) LymeDiseaseAssociatLymeDis [/QUOTE]
great letter pat! i started in on a letter last night but kept falling asleep at 2 am! i'll resume what i started now!
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Horrible article. Irresponsible reporting.
I sent a letter and emailed the article to another Lymie I know and her husband. Their daughter sees Dr. J. Hopefully, they'll send letters, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
i believe those who instigated the article (wormser et al and pals) are trying very hard to turn public opinion against jones support as well as blumenthols investigation.
these are the tactics they try and use to derail such political actions, which scare them.
i do not believe this should be written to forbes or anyone else for that matter, our best shot is to respond in droves to this article with balanced replies that show great concern for such unproffessional coverage of such a serious health matter.
i still believe it's getting like martial arts with these folks. they keep screwing up with these kinds of attacks - so take the momentum of the attacker and flip him on his back with it.
write Forbes, and also support blumenthol and other politicians who are now helping us.
stay well-reasoned, because science and morality are on OUR side. they would not be attacking if they did not feel threatened. IDSA docs actively denying Lyme have alot to be worried about professionally. stay the course, guys!
posted
There are so many errors in this article that it is astonishing it was printed.
Dr. J is one of my drs. He is one of the most dedicated & caring LLMD's I know. He only had 5 people testify, not 10. The Medical Review Board built their case around 10, but 5 of the 10 wrote letters in support of Dr. J.
Dr. J first opened his new clinic & then BC/BS sued him for 100 Million dollars. Currently, he is having to sell his own home to pay for attorney's fees. He had to let go 45 of his employees because of personal & professional bankruptcy. This is not a picture of a man who's rolling in the dough!
He is also helping to start a foundation to help patients who can no longer afford treatment. Who would be part of that foundation to a crook? No one, becaue he is not a crook. He is an honest man whose only crime is that he helped 1,000's of patients.
Those are just a few discrepancies. I'm sure someone will chime in about Dr. S.
I though Forbes had a more balanced article in December? What happened? My guess is that it is retaliation for the Investigation started by Blumenthal.
Looks like this will be tried in the papers. I think it is very important to have public opinion on our side.
Did anyone see the article about Dr. Jemsek in the RhinoTimes or was it the Rhinoceros Times. It's a local, weekly paper.
I'll try to find it again. Here it is. Please read it.
Thanks, Kayda
Medical Board Blocking Care
Rhino FROM STAFF AND WIRE REPORTS Rumors The Rhinoceros Times
Vol. VI No. 6 � Copyright 2007 The Rhinoceros Times Charlotte, North Carolina Thursday, February 8, 2007
Fifteen-year-old Kalyn ***gart can feel her world growing dark. It starts with a throbbing pain near the back of her head, the pressure from fluid accumulating in her cranial cavity building and pressing against her sensitive optic nerve with a blinding intensity.
Kalyn's world goes dark one slow frame at a time, the result of a debilitating disease that attacks the central nervous system. Her field of vision narrows as the swelling around her brain becomes more severe, progressively stealing her sight by the hour, day and week.
Kalyn's mother, Denise ***gart, knows that time is precious and that it is running out. ``If left untreated, Kalyn's ophthalmologist says she'll go blind,'' Denise ***gart said flatly of her daughter's deteriorating condition. `` Right now, we're looking at about a four-week window and it's terrifying.''
Denise ***gart has been in a race against the clock for nearly a month now, petitioning the N.C. Medical Board to allow her daughter to continue receiving medical care from Dr. Joseph Jemsek, a Charlotte-area infectious disease specialist who is at the center of a national controversy over Lyme disease that nearly cost him his medical license and, advocates contend, has left hundreds of his patients in dire straits.
Patients like Kalyn ***gart. Three years ago, Kalyn was sideswiped by a mysterious onslaught of ailments - chronic joint pain, crippling headaches, an alarming loss of cognitive abilities and a measured loss of vision.
She had gone from a straight-A student who loved hiking and playing the piano, Denise ***gart said, to a girl who was stumped by simple math problems and was often left bedridden for days. After months of doctor visits and batteries of exams, Kalyn's pediatric neurologist, Dr. Robert Nahouraii of Mecklenburg Neurological Associates in Charlotte, suggested she get tested for Lyme disease.
The ***garts went to see Jemsek, who had drawn national acclaim during the late 1980s for his pioneering work in the field of HIV/AIDS. Six years ago, Jemsek began expanding his medical practice to include the treatment of Lyme.
By the time Kalyn was referred to him in 2004, Jemsek had gained a reputation as one of the forerunners of so-called Lyme literate doctors, with patients from across the country seeking him out for treatment.
``We had the best neurologist; we had the best ophthalmologist and we wanted the best infectious disease specialist,'' Denise ***gart said.
Kalyn tested positive for Lyme and, under Jemsek's care with consultation from Nahouraii and Kalyn's pediatric ophthalmologist, Dr. Sandra Brown of Cabarrus Eye Center, she began a regimen of oral antibiotics.
After more than a year, Kalyn showed only limited progress and her doctors decided to pursue a more rigorous intravenous treatment.
``It wasn't an easy decision to make, but verybody had come to the conclusion it was what would work best,'' Denise ***gart said. Everybody, it seemed, had been right. Over the course of the ensuing months, Denise ***gart said, the IV treatments worked wonders.
``Kalyn was Kalyn again,'' she said. ``I know it sounds melodramatic, but it was a miracle.'' The miracle turned into a nightmare last summer, she said, when the N.C. Medical Board suspended Jemsek's license to practice medicine for one year.
The board ruled that Jemsek's treatment of Lyme disease using long-term courses of antibiotics fell outside the prevailing standard of care, even though the guidelines on which the standards were based - which advocate antibiotic treatments of no longer than 28 days - are stated to be optional.
The accepted guidelines, which were written by the Infectious Diseases Society of America, state that there is no proven evidence that the bacteria that causes Lyme persists past the first few weeks of treatment.
Additionally, while consent for treatment was obtained from every patient Jemsek treated, the board ruled that Jemsek failed to adequately inform patients that his treatment significantly differed from the accepted norm.
The board immediately ``stayed,'' or lifted, the suspension, allowing Jemsek to continue practicing medicine but with a number of restrictions for a period of one year. One of the restrictions was a prohibition from administering antibiotics for more than 60 consecutive days to treat Lyme patients.
Last September, Kalyn's cycle of IV antibiotics hit the 60-day mark. When the treatment was stopped, Denise ***gart said, Kalyn's symptoms returned with a vengeance.
Mass doses of diuretics to relieve the fluid swelling in her cranial cavity proved futile, as did a combination treatment of other medication. Last month, Kalyn underwent multiple lumbar punctures - painful procedures where a needle is inserted into the spinal cord to drain excess fluid - all without success.
``It's not that we haven't tried every route possible,'' Denise ***gart said. ``It's that nothing else has worked.''
Kalyn was put on restrictive bed rest following the failed lumbar punctures; her eyesight gradually diminishing as the pressure on her optic nerve increases and her mother continues to petition the N.C. Medical Board for a waiver of the 60-day treatment restriction placed on Jemsek.
Nahouraii and Brown have also both encouraged the Medical Board to allow her treatment under Jemsek to continue.
Last week, Denise ***gart learned that the Medical Board's director and its attorney had initially indicated they want the ***garts to explore options of seeking treatment from other physicians in North Carolina, or traveling to the northeastern US for care, before considering her request for a waiver to the restrictions placed on Jemsek.
Denise ***gart was devastated. ``It's insanity,'' she said. ``We're begging our own state's Medical Board to allow Kalyn to get healthy. We've already searched for other doctors in and out of North Carolina, and they either deny chronic Lyme disease exists or refuse to help.
``I don't think the Medical Board set out to harm children when they took their action against Dr. Jemsek,'' Denise ***gart said. ``But they are. They're harming my child.''
And she's not alone. The parents of another of Jemsek's Lyme patients - 15-yearold David Jacks - are also petitioning the Medical Board to allow Jemsek to continue administrating IV antibiotics to their son.
David's two other treating physicians have also written the Medical Board, encouraging the board to allow Jemsek to continue treating David.
``It's been incredibly frustrating,'' said David's mother, Katie Jacks. ``David's in a tremendous amount of pain and the longer this drags out, the worse it gets.''
David's medical history is remarkably similar to Kalyn's: Nearly three years ago, he went to bed one night feeling fine and woke up the next morning with chills, a fever and severe body aches.
``We thought it was a bad cold,'' Katie Jacks said, ``but it kept getting worse and it didn't stop.''
The Jacks sought treatment from a variety of doctors and David underwent myriad tests, until a psychologist recognized his symptoms as possibly being Lyme-related and recommended Jemsek.
David, similar to Kalyn ***gart, was started on a regimen of oral antibiotics but failed to respond. After nearly a year, the Jacks opted for a more aggressive IV treatment.
The first few weeks, Katie Jacks said, were horrifying. The potent antibiotics were actually making her son physically sicker.
``It's almost like chemotherapy,'' Katie Jacks said. ``The treatment is difficult; it makes you sick while it's making you better.''
After the initial sickness that accompanied the first IV cycle passed, David showed remarkable progress. But, like Kalyn, he became progressively worse as he was weaned off the IV. When the treatments resumed, so did his health.
``It's like night and day,'' Katie Jacks said. In that respect, it's been a long and dark night since David's IV treatments were halted by the Medical Board's 60-day restriction, Katie Jacks said. Her son has been receiving oral antibiotics from another doctor, but the doses are either too low to prove effective, or too strong for David to keep down.
Over the last six weeks, Katie Jacks said, her son has lost about 10 pounds, the result of a severe digestive disorder; he runs a constant fever, while recurring migraines and swollen joints bring him at times near tears.
His eyes, while not immediately in danger of losing sight like Kalyn's, are incredibly sensitive to light. He can't venture outside, even on cloudy days, without wearing two pairs of thickly tinted sunglasses.
``He says it's like living in a constant blur of pain,'' Katie Jacks said. When Katie Jacks learned last week that the Medical Board was expressing reservations about granting a waiver for Jemsek to continue treating her son, she was crushed.
``We're at the end of our rope,'' she said. ``We've looked for other doctors, but nobody will deal with it here because they're terrified by what happened to Dr. Jemsek.
``All we want is for our son to be able to be home and get well,'' Katie Jacks said. ``Dr. Jemsek did that for us. He gave us back our son's life.'' Other former patients, however, say that Jemsek destroyed theirs, that he's a reckless maverick more concerned with making a fast buck than with delivering quality medical care.
The N.C. Medical Board brought charges against Jemsek based on his treatment of 10 patients. During a two-day hearing last June in Raleigh, the Medical Board's attorneys - who act as prosecutors for cases brought before the 12-member board - argued that Jemsek's treatment violated accepted standards of care, and did more harm than good.
While more than 200 of Jemsek's patients turned out at the hearing to provide support, and hundreds more had sent letters offering the same, several former patients testified before the Medical Board that Jemsek had used them as a ``guinea pig,'' pumping them full of expensive antibiotics for months, sometimes years at a stretch, even if they had not been tested or had not tested positive for Lyme disease.
Heather Jenkins, who went to Jemsek in April 2002 with chronic fatigue and flulike symptoms, told the Medical Board that Care Jemsek kept her on daily IV antibiotics for nearly a year-and-a-half, during which time she developed multiple infections around the IV port in her arm.
The last infection, she said, put her in a hospital intensive-care unit for five days. ``He almost killed me,'' Jenkins said of Jemsek. A blood test showed that she did not have Lyme, although lab testing often proves unreliable in detecting the bacteria that causes the disease.
Joseph Jabkiewicz testified that his wife, Kathy, died after receiving treatment from Jemsek. Jabkiewicz said that Jemsek misdiagnosed his wife with chronic Lyme disease and subjected her to two years of needless antibiotic treatments, despite numerous lab tests that did not present positive for Lyme.
Over the course of her treatments, Jabkiewicz told the Medical Board, his wife became increasingly ill and was hospitalized numerous times.
Jabkiewicz is currently suing Jemsek in civil court. According to the lawsuit, Kathy Jabkiewicz obtained a prescription for morphine from Jemsek to help ease her pain and died after one dose.
Jenkins is also pursuing a lawsuit against Jemsek. Through his attorney, Jim Cooney of Womble Carlyle Sandridge & Rice, PLLC,
Jemsek issued the following statement:
``While applicable federal and state law prohibits us from discussing the specifics of any patient care, I can assure you that there is another side to the story.''
Jemsek told the Medical Board that his treatment of Lyme patients has evolved with time and that most patients now receive breaks between active, long-term therapy.
He said that only the sickest 20 percent of his hundreds of Lyme patients receive IV treatment, and that he has changed some of the language in the consent forms patients sign to emphasize that such treatment differs from the accepted norm.
Ironically, five of the patients who the Medical Board built its case against Jemsek around are still his patients and had written letters in support of Jemsek.
One patient, James Bowes, told the Medical Board that Jemsek had explained the risks of long-term treatment and that those treatments had helped him regain his health.
And in a Charlotte Observer article, one Medical Board member, Dr. Art McCulloch, conceded that long-term antibiotic treatment like Jemsek provides might one day be the norm.
The article, which was published after the board had disciplined Jemsek, reads, ``McCulloch, the Charlotte anesthesiologist, said Jemsek's approach could become the standard in five years, but for now patients need to know `his practice is out of the ordinary.'''
Dr. Beth Jordan, president of the North Carolina Lyme Disease Foundation in Raleigh, said she empathizes with the patients who testified against Jemsek, but maintains they represent only a small handful of the ones he treats, including herself.
Jordan received successful treatment from Jemsek for chronic Lyme disease, she said, after being shuffled for years from doctor to doctor.
``He helped me get my life back,'' Jordan said. ``By the time most of his patients get to him, they've suffered and been desperately ill for years, seen countless specialists and many of them had nearly given up hope for help.
``I'm glad the Medical Board allowed Jemsek to continue practicing,'' Jordan said. ``I think they recognized he's serving the community in a good way.''
Katie Jacks agreed, but worries about the fate of her son resting in the hands of the Medical Board. ``I feel that in many ways Dr. Jemsek has gone well beyond the call of duty and literally sacrificed his reputation in the eyes of many to help very ill people like my son,'' Katie Jacks said.
``I credit Dr. Jemsek with saving my son's life,'' she said. ``But will he be allowed to continue?''
Battle Lines Drawn In Bitter Lyme Wars BY M.E. PELLIN EDITOR
Kalyn ***gart and David Jacks, profiled in this week's Rhinoceros Times, have become front-line casualties in what has come to be known nationally as the Lyme Wars.
To a varying degree, so has their doctor, Joseph Jemsek. Last summer, the N.C. Medical Board disciplined Jemsek for his treatment of Lyme disease, which included long-term courses of antibiotics contrary to prevailing guidelines of care.
Additionally, while all of Jemsek's patients consented to treatment, the board ruled that he failed to adequately inform them that his treatment differed from the norm.
The board allowed Jemsek to continue practicing medicine, but with a number of restrictions for a period of one year. Whether he'll be able to continue doing Lyme disease is a bacterial infection caused by a corkscrewed-shaped bacterium called a spirochete, which is spread by the bite of infected deerticks.
Once the spirochete enters the bloodstream after a tick bite, it spreads through the body and can cause a wide range of musculoskeletal and neurological symptoms;
some of the more common include persistent headaches, fever, fatigue, muscle and joint pain and a reddish, bull's-eye skin rash, although not all patients develop the rash.
Lyme disease is named after the town - Lyme, Connecticut - where it was first diagnosed in the United States in 1976.
Lyme disease has been reported in 48 states, including North Carolina. so, at least in North Carolina, is uncertain: In January 2006, Jemsek said, Blue Cross and Blue Shield of North Carolina (BCBSNC) began denying claims on a majority of his Lyme treatments, just as his practice was moving into a new $8 million medical clinic he had built in Huntersville.
Last September, BCBSNC filed a lawsuit against Jemsek, alleging that he fraudulently and deceptively misrepresented the services and treatments he provided and failed to sufficiently disclose the nature of those services and treatments.
BCBSNC alleges that Jemsek owes the insurance company $14 million, and is suing him for up to $100 million.
Jemsek, through his attorney, Michael F. Ruggio of the Washington, D.C.-based office of Polsinelli Shalton Flannigan Suelthaus LLP, denied the complaints.
``I have a real problem with what the Blues are doing here,'' Ruggio said. ``There's no basis for what they did. It had to be something driving this other than his treatment of patients and that he didn't disclose stuff, because he did disclose stuff.''
Ruggio said that from 2000 through 2006, BCBSNC paid for the treatment Jemsek provided, while being given full access and conducting audits of his patient files, with no complaints.
Jemsek has filed a counter lawsuit against BCBSNC, Ruggio said, alleging that the insurance titan is in breach of contract, has failed to pay for services rendered and has engaged in unfair and deceptive trade practices.
In the wake of the Medical Board's ruling and BCBSNC's lawsuit, Jemsek has filed for personal and professional bankruptcy. He said he's currently in the process of selling the Charlotte home he built 20 years ago to pay attorney fees.
Jemsek's clinic owes more than $2 million to its top 20 creditors, according to court documents, and this week was served notice of foreclosure. The clinic, he said, has already had to layoff 45 employees.
Jemsek's HIV/AIDS practice, which he built over 23 years, has been forced to go to a fee-based system for patients because insurance carriers will no longer cover his treatment, effectively shutting down the state's largest, private HIV/AIDS facility.
Jemsek, who in the early 1980s diagnosed the first case of AIDS in Mecklenburg County, said that his 1,000 HIV patients have had to find care elsewhere, many with limited success.
Before the Medical Board and BCBSNC storm hit, Jemsek said, his clinic had been providing care for about 200 new HIV/AIDS patients a year.
Jemsek has twice been recognized by the state for his HIV/AIDS work, receiving the Certificate of Appreciation and World AIDS Day Volunteer Service awards from govenors Jim Hunt and Mike Easley.
Jemsek currently treats about 1,200 Lyme patients. But like his HIV/AIDS patients, many have been forced to look elsewhere for treatment because BCBSNC, along with other insurance carriers, no longer covers his.
``It's been difficult for my patients, who are very worried about their future medical care, '' Jemsek said. ``We draw tremendous strength from the support they've given us and continue to provide us on a daily basis.
``We believe that we've restored health to thousands,'' Jemsek said. ``We're not going to give that up. We owe it to our patients to fight for their care, in spite of the adversity.''
It will likely be a long, costly and bitter battle, and one that could have national implications.
``This will be a very, very important case that could set precedent for any and all Lyme treatment and any and all insurance coverage nationwide,'' Ruggio said of Jemsek's legal battle with BCBSNC.
Jemsek, 57, isn't the only doctor that has been disciplined by medical licensing boards, or faced insurance problems, for the treatment of Lyme disease.
Nationwide, about 30 doctors have faced similar charges for treating Lyme patients contrary to accepted guidelines of care.
Those guidelines were created by the Infectious Diseases Society of America (IDSA) - an 8,000-member organization comprised largely of doctors that specialize in the treatment of infectious diseases - which believes Lyme can be cured with a limited treatment of oral antibiotics, typically not more than 28 days.
The IDSA guidelines state that the long-term use of antibiotics is not only ineffective, but can be harmful to patients.
The IDSA does not acknowledge the existence of chronic Lyme disease, where Lyme-like symptoms last for more than a few months and sometimes years. The IDSA guidelines state there is no solid diagnostic evidence that infection with Borrelia burgdorferi - the bacteria that causes Lyme - persists past the first few weeks of treatment.
``I keep hearing about people complaining about these long-term symptoms,'' said Dr. Jeff Engel, the state's chief epidemiologist, who testified against Jemsek in last summer's Medical Board hearing.
``I feel for them,'' he said. ``I know their pain is real. I know they've gone from doctor to doctor. I want them to get better. But there's no evidence they have Lyme.''
By contrast, the International Lyme and Associated Disease Society (ILADS) believes that Lyme should be treated with antibiotics until all of a patient's symptoms are resolved, and that diagnosis of the disease should depend as heavily on hands-on, clinical observation of patients as lab tests.
The Centers for Disease Control and Prevention (CDC), they note, even recommends against relying solely on diagnostic tests.
The ILADS, with about 300 members of physicians and infectious disease specialists, recognizes chronic Lyme as a legitimate disease, pointing to thousands of patients that have exhibited long-term symptoms consistent with Lyme.
The differences between the two, competing philosophies of care for Lyme disease have ignited a firestorm of controversy and frequently pitted doctor against doctor.
The Lyme War battle lines have been drawn, and it's often patients who get caught in the rossfire.
The CDC endorses the IDSA guidelines, but there is no rule that stipulates doctors must follow them. In fact, the guidelines carry an important disclaimer - a note that the recommendations ``are not intended to supplant physician judgment in respect to particular patients in special clinical situations.''
``The people who say that this is a set of rules that can't be broken and everybody has to follow absolutely, or a bolt of lighting's going to come down and smite them, clearly it's not that,'' said Dr. Eugene Shapiro, one of the authors of the IDSA guidelines and a professor of pediatrics and epidemiology at Yale University School of medicine.
``The guidelines,'' Shapiro said, ``are meant to provide an unbiased guide by experts of the best scientific evidence to try to help patients.''
Critics of the guidelines, however, argue that too often they have become the default standard when medical licensing boards and insurance companies make decisions regarding Lyme disease treatments.
Dr. Raphael Stricker, president of the ILADS and an oncology specialist with Union Square Medical Associates in San Francisco, said that he routinely treats Lyme patients with long-term therapy, but only because California is one of the few states with legislation that protects doctors from being disciplined for doing so.
Rhode Island offers similar protection, as does New York.
Last December, after the IDSA released its updated guidelines, hundreds of protestors from around the country took to the streets outside Valhalla, New York's Westchester Medical Clinic, home base of Dr. Gary Wormser, the lead author of the IDSA guidelines.
According to an article in The Journal News, protestors waved signs with messages ike ``Wormser lies ... Patients Dies'' and ``Dr. Wormser - You Make Me Sick!''
Wormser declined comment through a spokesperson this week about his involvement with the IDSA guidelines and the criticism they've spawned, referring all questions to the society.
IDSA spokesperson Diana Olson said, ``It's heartbreaking when you hear stories like that. Our hearts go out to patients who are seeking other long-term treatment options.
But, to be quite honest, I think that a lot of the folks who believe that they have chronic Lyme disease may, in fact, have other conditions.''
That's small consolation for Katie Jacks. Her son, David, is one of Jemsek's patients that had insurance coverage revoked for longterm Lyme therapy.
``I actually believed their commercials about how they'd always be there for you,'' Katie Jacks said of BCBSNC. ``They haven't paid a penny, even after David had tested positive for Lyme, and long-term treatment is the only thing that has worked.
``It's insulting to have somebody tell you your son isn't sick,'' she said, ``when he's curled up in a ball of pain.''
Pat Smith, president of the New Jerseybased Lyme Disease Association, which represents 24 patient-advocacy groups across the country, said a growing number of insurance companies are refusing to cover long-term Lyme treatment because of the IDSA guidelines.
``Patients are constantly telling us about their inability to receive long-term treatment,'' said Smith, who has two daughters with Lyme disease. ``What are they supposed to do, just continue suffering?''
Shapiro said the IDSA guidelines weren't crafted to insult or deny treatment to any patients, although they're often wrongly judged to that end. ``I think part of the problem is that some patients have taken the guidelines as a bunch of people in white lab coats saying, `You're not sick,' or `You don't have a problem,''' said Shapiro,.
``In fact, there's a lot of evidence that many of these patients have significant problems,'' Shapiro said. ``Part of the problem is, if their problem isn't Lyme disease, not only are they getting unnecessary treatment that will provide no benefit, but they aren't getting treatment for what they may have that actually would help them.''
Shapiro said there's a reason insurance companies deny certain coverage. The IDSA guidelines are based on scientific fact, he said, backed by years of research and volumes of clinical studies.
Long-term antibiotic treatment for Lyme disease, he said, doesn't work and carries substantial risk, which the guidelines reflect.
``What you're doing is you're weighing benefit versus risk,'' Shapiro said. ``And if there's no benefit and substantial risk, I don't think insurance companies should be paying for that.''
The IDSA guidelines, though, are coming under renewed scrutiny. Connecticut Attorney General Richard Blumenthal filed a Civil Investigative Demand inquiry last December into the IDSA based on the contention that the group's updated guidelines might harm Lyme patients by restricting care.
The inquiry is also exploring possible anti-trust violations by the IDSA concerning the development of its guidelines and how they are administered. Blumenthal could not be reached for comment.
An article by the Associated Press, posted last December on The Boston Globe's Web site, quotes Blumenthal as saying of the IDSA guidelines, ``These rules diminish the options available to doctors and their patients in ways that can sanction insurance company decisions to deny coverage, so they can have an economic impact that could be very serious.''
Olson said the IDSA is cooperating fully with the Connecticut attorney general's subpoena regarding the society's guidelines, and that it ``stands behind its method of developing and issuing guidelines for diseases, including Lyme disease.''
Lorraine Johnson, an attorney and the executive director of the California Lyme Disease Association, said the IDSA guidelines are too restrictive.
``They list more things that you can't do than descriptions of what you can do,'' Johnson said. ``And their list of what you cannot do appear to be the practices of their competitors.''
Also, several of the authors who wrote the guidelines have conflicting interests with companies that develop vaccines or other Lyme-related interests, she said.
``These conflicts helped drive the viewpoint of the physicians sitting on the IDSA panel,'' Johnson said. ``Things that become good for the commercial interests get in the way of what's best for the patient.''
A disclosure statement attached to the bottom of the IDSA guidelines shows that five of the 14-member panel that created the guidelines listed potential conflicts of interest, including Wormser, the guidelines lead author, who has received consulting fees from Baxter Healthcare Corporation and research support from Immunetics, a biotechnology company that develops Lyme
Another IDSA panel member has also received consulting fees from Baxter, while another is part owner of Biopeptides, a biotech company that develops vaccines and laboratory diagnostics, including products for Lyme disease.
Still another panel member has served as an expert witness for pharmaceutical giant GlaxoSmithKline; another has a patent pending with a university on a Lyme diagnostic procedure that is not yet on the market .
Olson, the IDSA spokesperson, said the guidelines were based on scientific evidence and proven research, not the influence of commercial interests or insurance companies. The guidelines, she reiterated, aren't used to
Jemsek, ironically, is a member of IDSA and offered praise for the society; but not on the issue of Lyme ``I think the IDSA is a wonderful and very talented group of professionals,'' Jemsek said. ``They're just dead wrong on this Lyme issue.'' Lyme Wars
Kayday
Posts: 582 | From midwest | Registered: Nov 2006
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bettyg
Unregistered
posted
betty's email back ...
484 words below!
I am appalled Forbes'magazine would print a one-sided and inaccurate article which tries to paint a picture of money-hungry LLMDs, lyme literate medical doctors! These doctors often see patients for 2-3 hours on the initial visit and 30-90 minutes on follow-up visit since lyme is so complex!
The prices they charge are NOT any different and are often less than any other specialist charges. But the number of patients they can see in a day is often LESS than conventional physicians who see their patients at ONLY 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
Additionally, they are burdened:
* helping patients fight the bureaucracy of treatment reimbursement for a disease where biased science is the accepted "standard of care."
* Completing endless paperwork to geth them approved for SS DISABILITY INSURANCE benefits program when we no longer can work!
* Our LLMDs have long waiting lists and history of helping patients regain their health. Daily many 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.
I've had CHRONIC lyme disease for 37 years; 34 years MISdiagnosed by 40-50 MDs/specialists since lyme disease mimics 300 other illnesses: ALS, MS, Bell's palsy, fibromyalgia pain, chronic fatigue, Parkinson's, mental illnesses, etc!
I've been in chronic lyme treatment for 2.5 years now having had 20 months of pulsed 2 antibiotics. My 2nd LLMD put me on 6 months of supplements. I hope REMISSION is in my future!
Very FEW CURED; they are the early ones who had a tick embedded, or have the bulls-eye rash! I did NOT see a tick nor did I have this specific rash!
It was Jan. 1970 when I got so deathly sick and confined to bed with so-called mononucleosis/Epstein Barr virus. It was a tick that escaped from a LIVE Christmas tree that bite me My folks always had live trees. My apt. roommates had NO animals, and it was SUB-ZERO weather in Iowa; so I wasn't outside gardening!
I've been fighting 10 months to get $4300 reimbursed to me through Iowa's Wellmark health insurance company for my LLMD visits, meds, and different body lab testing showing other things wrong with me where lyme has created those problems too! Lyme is in my lungs, brain, and heart; but no kidneys yet!
Iowa does NOT have any chronic lyme literate MDs in our entire state; so we have to go out of state for treatment to Missouri and Minn (NOT MAYO CLINIC!) So there is another $1,000 in out of pocket expenses: lodging for 2 since I need a driver; food; and gas!
Forbes should not be joining IDSA MDs against the ILDA patients of LLMDs. Betty Gordon
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posted
Calling this journalism is inappropriate an inaccurate. I must wonder if the editor read this article before it was published. If so, he/she should seek a different profession.
Every time I see something this biased I feel compelled to let people know that there ARE STILL JOURNALISTS WITH INTEGRITY!
I have so much passion for the purpose journalism is meant to serve, and I know many people in the profession that I very highly regard. It breaks my heart to see things like this that inevitably challenge all of our credibility.
Please don't allow this writer to be a reflection of media as a whole. It really is the exception, not the rule.
Posts: 106 | From Michigan | Registered: Oct 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
This article was shocking to me. I keep watching for someone who was there to contradict one aspect reported, but so far, no one has.
Please tell me (from someone who was there). Did Dr Jones show up for his hearing in a stretch limo? I recall many pleas right here on lymenet for contributions toward his legal expenses. Please tell me he did not appear in a stretch limo.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
dr jones is an elderly man acting as the sole pediatric specialist for children with Lyme SEVEN DAYS A WEEK, who is under a bogus investigation by medical boards costing thousands upon thousands in defence and a tremendous amount of strian and pressure to prepare for each hearing. the hearings have been a kangaroo court.
on top of that, he has chronic leg pain, needs a cane to walk, tho his physical disabilites in no way hamper his clarity of mind and astute medical expertise.
this article is nothing more than a masterpiece in spin.
yes, he did have a ride arranged by a car service to help them with travel and they sent a limo for one of the hearings.
yes, dr st. has worked with penis enlargement clinics.
yes, a patient had complications while being treated by dr. jem in NC.
and perhaps mother theresa picks her nose, or has an affinity for bon-bons and vogue magazine when she thinks noone is looking.
don't fall for this sensationalism and SPIN, please.
if we have to start defending jones among our own here, then they are winning with this trash reporting after all.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Greatcod
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posted
Exactly who is Mr. Whelan? He is a writer for Forbes and without question did this slanted piece as directed by Forbes management. Forbes is sort of like Fox News in print...not exactly fair and balanced. Pro pro business. The article is a hit job on ILADS for the IDSA and the organizations that don't want to pay for long term IV therapy for Lyme patients. DO NOT confuse this crap with investigative journalism, or anything that is intellectually serious. You can look up more of Whelan's work for Forbes by Googling "David Whelan Forbes" and going from there. Not exactly Seymour Hersh.
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posted
I don't think we will find money changing hands in all such cases. Probably not in this one. Sometimes it is more a matter of protecting vested interests in the corporate environment, against consumers. That pretty well sums up Forbes outlook. So, he may just have been doing this for friends and with the general philosophy that whatever creates profits for companies, like health insurers, is good. No matter who else is hurt.
I also don't think we will find that all of the authors of the IDSA guidelines are taking money from insurers. Some have, but it is a bigger and more entangled situation than this. Ego and toeing the govt line are also involved. I don't think at this point that ignorance can possibly be an excuse, not on the part of the IDSA or Forbes.
Posts: 8430 | From Not available | Registered: Oct 2000
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
My LLMD warned me of this article on Thursday at my appointment- I had no idea it would be this bad.
PLEASE, we really need everyone to write something- it does not have to be long, just somethng!
Thanks, Melanie
---- Your Lyme disease article- A National Tragedy
To Whom It May Concern,
As the Executive Director of The National Lyme Disease Memorial Park Project, I feel compelled to respond to your recent most chilling and one-sided article concerning what can only be described as a National Tragedy.
Perhaps, your reporter should have taken the time needed to gather a few more facts before dismissing countless scores of seriously ill and disabled Americans. Perhaps then, he would have learned that Borellia burgdorferi is the fastest spreading vector-borne disease in this country. He may even have learned that Tickborne diseases have been reported in every state of the union.
A small amount of forethought would have easily led him to information verifying the tragic nature of Tickborne diseases and the devastation that they bring to patients of all ages, all races, all socio-economic status and all their loved ones suffering from their effects.
Tickborne diseases are multi-systemic, lethal pathogens that evade even the most advanced testing and treatment protocols. This one fact explains the extreme difficulties that most patients encounter while trying to find a proper diagnosis, and it also explains why so many patients seek specialists after years of being misdiagnosed.
The National Tragedy is the manner in which our patients are being persecuted by the very ones they are seeking help from...misinformed physicians and insurance companies who ignore simple facts that are easily found and understood, if only they, like your reporter, would take the time to look deeper.
The National Tragedy is the manner in which the physicians who do treat Tickborne diseases against all odds and who risk their very careers are being persecuted for simply continuing to practice a sworn oath of ``First, do no harm''.
The most distasteful National Tragedy here is the manner in which your magazine is continuing to spread a simple myth, one that has grown to acceptance over the years without further investigation from the uninformed; a myth that claims ``Lyme disease is difficult to catch and easy to cure;" a tragic myth that has caused the deaths of far too many.
The National Lyme Disease Memorial Park Project seeks to serve everyone touched by these debilitating illnesses by offering accurate, truthful and verifiable information on this subject. If only your reporter would have dug a little deeper, he could have helped to unearth the truth rather than bury it further.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I have a friend whose daughter goes to Dr. Jones. They couldn't afford the appt. so he adjusted the rate for them. He said he'd never deny any child proper treatment. This does NOT sound like someone in it for the money!
I have ridden in several limos ... mainly to and from the airport and once to a funeral. Who cares? Even high school kids take them to prom! It was irrelevant for the article to even mention a rented limo.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
My Reply;
Dear Mr Whelan,
You have set a new standard for others on the reporting of the Lyme Disease "Wars"!
Congratulations! Really!
Thanks for insulting the hundreds of thousands of present Borrelliosis sufferers and the millions to come. Thanks for sending out more inflamatory and inaccurate information to the public and professionals of the world. Thanks for helping the cause of those that would take away the treatment regimens that have helped my two young children and I recover from this devastating disease.
You have set the bar to its lowest level...ever.
What do I really enjoy about all of this? You've helped me make a rather BIG step in my future investment strategy.....my subscription is up for renewal with your hard-copy crap house reading material....and it won't get renewed.
In fact, as a Conservative Registered Republican I would also like to thank you for helping me focus on an issue what should be in the top THREE of all seeking office in the coming years.
1) Economy 2) Global Warming 3) Lyme and Other Tick Borne Illnesses 4) Defense
Yep, you set the bar...where it needs to be. Now I can use your obvious short-sightedness to my advantage in showing how discriminating and commercialized reporting has become.
I'm also sure that your magazine will retain its advertising investor that produce the drugs and treatments that are meant for LIFE-TIME Symptom Relief, rather than the possible CURES that these cutting edge God blessed physicians may offer future sufferers.
I guess, in the end...it is all about money. But, who ever said that you can put a price on human suffering? Evidently you have and that price is a big fat zero.
Shame on you and Forbes for this article. Shame on.
Kent Larsen
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Great letters all.
I am too angry to write anything right now, if this keeps up there won't be any LLMDS anywhere!
Posts: 6641 | From Michigan | Registered: Jun 2001
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posted
When I clicked on the link in Don't Like Livers reply the page wouldn't come up although it was Forbes website so I typed in the search David Whelan and this came up: ____________________________________________________ * Lyme Inc. March 12, 2007 Ticks aren't the only parasites living off patients in borreliosis-prone areas. _____________________________________________________
Looks like an upcoming article. I guess he's not done going after our Drs.
Posts: 158 | From PA. | Registered: Jul 2006
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posted
dr stricker has published great articles on lyme research as well as medico-legal information that is very valuable to us. he is highly credentialed in hematology and infectious disease.
(the article on two standards of care with l.johnson, esq. being just one publication, which is a tremendous tool for us with insurers and disability insurance rights, ect.)
kennedy - you have to register to read the article off forbes. it's dated 3.12 but is out now.
it's critical to the greater cause that we respond with at least 1000 emails asap. please see the action alert thread.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
fyi, i sent the original article and my reformatted pat smith letter to those on my private support group list:
lyme locally/from here, etc.
and those locally from our fibromyalgia/chronic fatigue groups since they were mentioned as well.
if you haven't emailed your list groups, please do or post on another board about this horrible article. thx
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posted
Just sent mine to editor and to Mr Whelan--he probably also thinks there is "no lyme in California."
In David Whelan's article, "Lyme Inc.", his ignorance is only exceeded by his lack of objectivity. How such a sloppy, fact starved, unbalanced piece could have been published by a reputable publication is stunning.
The damage he has done to patients seeking treatment will take years to counteract, even if Forbes immediately prints a retraction.
It took six years for me to start treatment, even with repeatedly positive test results and the"bull's eye" rash at the site of the bite, because so few physicians recognized lyme and even fewer were willing to treat. Yes, they would diagnose, but no, treatment was... too difficult.
The few lyme literate medical doctors we have are working tirelessly to help keep lyme patients out of wheelchairs, out of the hospital, and back to productive life. Had it not been for my lyme specialist, I'd have had unnecessary knee replacement surgery. Fortunately, aggressive oral antibiotic treatment saved my knees, shoulders and eyesight.
I noticed the author was with the Silicon Valley Forbes bureau. It is just a short drive north of San Francisco up to beautiful Sonoma County, where I was bitten by a tick in my own back yard. I'd be happy to invite Mr. Whelan to come up to play with a few of our deer ticks. (we have to do tick check on our dog every time he comes in from the yard--so I may even have a few fresh ones on hand) If he's lucky, maybe he can even get an infected one to latch on so that he can personally research how easy it is to treat lyme ( or one or more of the lesser known tick borne diseases the filthy little monsters can pass on)
Sincerely,
( I signed my real name and home town--some require a telephone number but I did not put that--at any rate, the guy will get to read it even if they don't publish.)
Posts: 287 | From Northern California, USA | Registered: Oct 2000
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posted
Nimzovich -- the cause of Lyme/co-infections is too dire to be focusing on particular individuals' resumes. The future of all life on our planet is at risk. We are dealing with a worldwide pandemic, and that's what I said in my letter to them.
The US is not the only location with Lyme. People and animals are suffering and dying from Lyme/co-infections in most countries now.
Forbes needs to be told to focus on what matters -- education, prevention, research, adequate diagnosis and treatment for Lyme disease/co-infections. And accurate medical information, if they are going to report on medical conditions at all.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
So the woman didnt see the tick bite.What about all of us who had the ticks on us and became very ill,right after the bite,and some never recover.How do they answere that question.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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Dear Editors, With all due respect, I find it my duty to express my opinion about the recent article 'Lyme, Inc' by Mr. Wheeler. There is so much controversy in the medical community about the treatment and diagnosis of Tick Borne diseases, that it is hurtful and harmful when well respected and widely circulated magazines present such one-sided opinion as fact.
I feel for you because I believe there is a good chance that you were used to assist the powerful side of the debate. Unfortunately too many people are suffering because of chronic lyme disease.
You were given biased information, did not research its validity, and wrote a very flawed and scary article.
You are in my thoughts -- I wish for you the ability to find peace in your heart, knowing the harmful misinformation you presented to so many people.
Posts: 300 | From Northeast | Registered: Dec 2006
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To be an expert on a fossil does nothing at all for the living evolution except to close the door on discovery and it is a shallow mind clinging to its ego who does this. We are living in a different time. It is not the same as in the 1970's when lyme disease began to be documented. The cases of children who were infected during that same time period around outwards of several hundred mile radius' are coming to light. These children have lived their lives with a progression of undiagnosed and advancing lyme disease, a complex process that few doctors understand. Clear as global warming, the truth will become more obvious to those whose concern seems only to be cost when this concern truly articulates the failures of health insurance and the health care system. It would not be nearly as costly if cases were identified earlier but instead people have been left with severe debilitation the likes of which arthritis and fatigue barely scratch the surface. It is criminal that these patients are forced to pay out of pocket huge sums of monies standing in the face of an establishment that stigmitizes and belittles and who is not listening but who is preoccupied with what they think they know rather than opening themselves up to discovering what they cannot possibly yet know because it is just now being revealed.
This sounds like a word game to you. Do you even realize what your words do to those who must live with their effects?
It may be true that the jury is not out on long term antibiotics but enough studies have been done to consider it an option that could give a person her life back or at least some semblance of what it was.
posted
May I suggest the phrase "Kent Brockman journalism" for this kind of journalism which tells you all about the mood of the journalist writing it, but nothing about the subject of which he or she is writing?
Furthurmore, I think someone should point out, that since there are a lot of contradicting and difficult research it is possible for a fair minded individual to geniunely research both sides and decide the IDSA side is closer to the truth (wrongly we would say). But this article never rises near that level because of the total lack of all but the most cursory research. It is as if the writer adopted an idea, got snippets of information as anyone could get on google, and then filled in the rest of the article with his own tirade.
BTW, I thought it should be mentioned that the Wall Street Journal was infamous for doing this to CFS patients, if I recall correctly especially during the early-mid 1990s.
It terrible that these people put a price on human life, and then price it so low! If you, or your organization, want to help some group of people suffering from a disease it's like you almost have to say: "well this decreases the GNP by X% and treatment would be less costly in the long run. etc."
It is really sad. You would hope you could just say that there are human beings who are suffering or suffering & dying...
Anyhow I read the article sitting down as CALDA recommended, it didn't really help.
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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In Lyme, Inc. David Whelan characterizes doctors who treat Lyme patients as parasites.
The only parasites I have came from a tick. But I sure wish the dogs would stop barking, growling and snapping at my doctor, and start following the trail of the real story.
Late in the year 2005 I had what I thought was an odd flu. Two hours of teeth chattering chills followed by 12 hours of a high fever. I had no other symptoms. I didn't give it much thought - just one of those things.
I didn't know that this could be related to my hobby of hiking.
My health over the next year deteriorated: ∑ Fatigue, needing 10-14 hours of sleep daily ∑ Continuous debilitating migraine ∑ Migrating pain in my joints ∑ Cardiac arrhythmias requiring 8 days of hospitalization
Numerous specialists treated my symptoms, though none could tell me why my health had deteriorated.
After a negative Lab Corp Western Blot, and twelve months into this journey I got results of an IGeneX Western Blot that showed positive by CDC standards. From 2001-2005, in the stringent NY proficiency tests, IGeneX scored better than 95% accuracy. Out of 58 labs, only IGeneX had a perfect score on Western blot proficiency.
At a subsequent appointment at a hospital-based Lyme clinic the IDSA doctor told me that the test indicated that I had some other ``cross-reactive pathogen'' -- which she couldn't name. Alternatively this ``Lyme expert'' suggested that I had a post-infection autoimmune disorder -- for which she couldn't help me.
Looking for help, I called two other hospital infectious disease departments, and was told by both ``We don't treat Lyme Disease.''
I spent a week of 8-hour days trying to find a doctor willing to treat Lyme disease. I was put on a two waiting lists for doctors who take insurance, one 60 miles away, the other 300.
I was also put on a cancellation list for an ILADS doctor who does not take insurance. A month later I got an appointment.
This doctor spent nearly 3 hours with me on the initial appointment. I paid her directly, a fee I'm sure was lower than the potential insurance reimbursement she could have gotten for seeing 12 patients for 15 minutes each.
Unlike the IDSA doctor, this doctor knew which tests to run to rule out possible cross reactive infections and the appropriate tests to run to confirm the diagnosis of Lyme.
Here is the trail that investigative reporters should be following:
Why do so many doctors miss this diagnosis? Why do ID doctors refuse to see people with Lyme? Why do they deny the existence of a proven condition, chronic Lyme? Why are they blacklisting a lab that clearly offers a superior test?
By the way, once I started treatment with antibiotics, my arrhythmias ceased. Overall my health is improving. I'm not well yet, but I have a diagnosis and I have hope, which is more than a year of insurance reimbursed doctors gave me.
Posts: 112 | From RI | Registered: Jan 2007
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
My letter is done.
Posts: 6641 | From Michigan | Registered: Jun 2001
| IP: Logged |
posted
wow, these letters are excellent and raise allot of good talking points.
unfortunately, i shot mine off the day the article came out, and i forgot to keep a copy
between us here:
the thing is, as they paint jones so rediculously
"stepping out of his limo to the cheers of his fans"
let's not forget that the Lyme community are the "cheering fans"
that's us.... a bunch of groupies, ever so excited to be dealing with chronic, debilitating illness.
let's pass a doobie while we hold up our lighters at the next hearing..
mo
* i think this article will ultimately serve our cause well. it is so utterly rediculous.
i say we make a BIG example of Forbes so these kinds of articles are never written again.
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Forbes, NY Times, Wall Street Journal are all tied in with acadamia - and the business of healthcare.
they've all made 'hits' on Lyme disease.
this one is REALLY bad tho, and we have more advances to back up a strong counter than ever before IMO.
Posts: 8337 | From the other shore | Registered: Jul 2002
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
I sent my letter-Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
posted
up
Posts: 8337 | From the other shore | Registered: Jul 2002
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Folks, yet another reason for us to make sure the Columbia Lyme Center has enough $ to open the doors.
It will send a strong message to have a dedicated research center at an IVY League eaching hospital. Certainly will help with these kinds of articles.
I'm cancelling my script to Forbes. What a major shafting to read this crappola.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Dear Mr Whelan,
You have set a new standard for others on the reporting of the Lyme Disease "Wars"!
Congratulations! Really!
Thanks for insulting the hundreds of thousands of present Borrelliosis sufferers and the millions to come. Thanks for sending out more inflamatory and inaccurate information to the public and professionals of the world. Thanks for helping the cause of those that would take away the treatment regimens that have helped my two young children and I recover from this devastating disease.
You have set the bar to its lowest level...ever.
What do I really enjoy about all of this? You've helped me make a rather BIG step in my future investment strategy.....my subscription is up for renewal with your hard-copy crap house reading material....and it won't get renewed.
In fact, as a Conservative Registered Republican I would also like to thank you for helping me focus on an issue that should be in the top THREE of all seeking office in the coming years.
1) Economy 2) Global Warming 3) Lyme and Other Tick Borne Illnesses 4) Defense
Yep, you set the bar...where it needs to be. Now I can use your obvious short-sightedness to my advantage in showing how discriminating and commercialized reporting has become.
I'm also sure that your magazine will retain its advertising investor that produce the drugs and treatments that are meant for LIFE-TIME Symptom Relief, rather than the possible CURES that these cutting edge God blessed physicians may offer future sufferers.
I guess, in the end...it is all about money. But, who ever said that you can put a price on human suffering? Evidently you have and that price is a big fat zero.
Shame on you and Forbes for this article. Shame on.
Kent Larsen Trout Scout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
WOW! Look at you guys go! These are the best letters I've seen in a long time!!! ALL of them are VERY good.
I've sent 4 letters so far. I was rather calm and collected for the first three.. but had a hard time on this last one. Oh well.
I sure hope I don't hurt their feelings.
Question- What do you get when you mix a handful of unscrupulous doctors who are being investigated by the government for antitrust, monopolization, and exclusionary conduct... with a disgruntled patient who has a history of attacking decent doctors because they couldn't fix stupid?
Answer- A cash cow that is drying up... and a lot of bull.
Mix that with an unprofessional journalist who can't be bothered to research all the facts and you have the makings of tabloid trash at its worst, or ``Forbes'' as we now call it.
Your Lyme, Inc. article is not only inaccurate and pitifully one sided, it is a disservice and a disgrace to hundreds of thousands of patients and their doctors who have struggled for the past 25 years to get help for a complex and serious infection that has been regulated and manipulated by a handful of researchers who have vested interests in the outcome.
According to the CDC and many peer-reviewed medical studies, the Lyme tests your wizards behind the curtain promote are notoriously unreliable. The vaccine they developed and pushed on the public was pulled from the market after adverse event reports were filed with the FDA and legal actions ensued.
The highly contested diagnostic and treatment guidelines they prepared and published, which were based on their results from their poor lab tests and trials from their failed vaccine, are leaving a growing number of chronically ill or deceased victims in their wake.
Had your `script writer' taken time to understand the Lyme disease issues, perhaps Forbes wouldn't have been duped into printing this disgusting article backing idiots who give off a stench of `sour grapes' now that they've been caught with their pants down; and who are using Forbes to try and climb out of the hot vat of apple butter they've fallen into.
Had your reporter not taken the ``easy'' way out, you would have discovered those you are promoting have a track record of being totally wrong on multiple occasions with their self-serving scientific findings and have flip-flopped their research conclusions over the years to suit their own needs, as they climbed their way up the proverbial research money ladder.
Their money games and scientific deceptions, which government officials are now digging into, continue to deny a growing number of people a proper diagnosis, adequate treatment, and reimbursement for medical bills related to Lyme disease. The chronically ill patients and their families who were originally caught in their tangled web of deceit have lost their health, their jobs, their homes and when pushed to the brink with no hope in sight or help forthcoming, their sanity and their lives.
Forbes is nothing more than an old broom, which, for some reason, hobnobbed with deplorable people and helped sweep the crime of Lyme further under the carpet. May someone throw a bucket of water on you and remove that evil broom from your clenched fists, before you do more harm to our families, our doctors and our precious children.
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Fight with FACTS.
Document the most RECENT research that indicates lyme can be chronic, can be a trigger for Alzheimers, Parkinson's, etc.
Send the author (and your local newspapers)recent medical abstracts. Do it often. Pubmed is an excellent source. "Summaries" of research from around the world are often provided there.
Demand $$$ be spent to find a cure before this pathogen leads to even more devastating diseases.
This disease is NOT impossible to detect. Biopsy the lymph nodes. It will be there.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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