posted
Hi folks, This article is from The Scientist journal. Don't forget to check out the person quoted in the last paragraph. With friends like this .... Ellen
State Official Subpoenas Infectious Disease Group
Connecticut' s attorney general probes whether the professional society's Lyme disease guidelines violate antitrust laws
[Published 7th February 2007 02:56 PM GMT]
Connecticut' s attorney general has launched an antitrust investigation into The Infectious Disease Society of America's new guidelines for the treatment of Lyme disease, an unprecedented move that raises questions about the government's role in scientific consensus.
Attorney general Richard Blumenthal has subpoenaed IDSA records on grounds that the guidelines, which do not recognize a chronic form of Lyme disease, are anticompetitive. If doctors refuse to diagnose patients with chronic Lyme, Blumenthal contends, patients will have limited access to treatment and insurance reimbursement, a potential violation of state antitrust laws.
The attorney general's decision to weigh in on medical consensus has ruffled a few feathers. "We're complying with the subpoena, but we're unhappy to see this kind of political interference with what are very normal and routine guidelines," Martin Blaser, chairman of the department of medicine at NYU Medical Center and president of the IDSA when the guidelines were published late last year, told The Scientist.
Blaser added that clinical guidelines have to be based on science, not economics. "This is research of the literature. What does the literature support and what does it not support," said Blaser, adding that the IDSA makes it clear the guidelines are voluntary, and physicians should use their discretion when treating Lyme patients. Patients can be harmed by long-term use of antibiotics, he noted, and a misdiagnosis of chronic Lyme could halt or delay treatment for the true cause of symptoms.
IDSA's lawyer, Alvin Dunn, said the antitrust investigation is unprecedented, and could have more far-reaching effects. "If we have to worry each time [we craft medical guidelines] that maybe we will be getting subpoenaed and have to go through the time, effort, and expense of responding, then we might not take controversial but appropriate positions," Blaser noted.
Blumenthal countered that even with disclaimers, the guidelines have a significant impact on the clinic. "The question is whether there is a denial of coverage to patients and doctors as a result of inflexible standards that are then adopted by insurance companies," Blumenthal told The Scientist, adding his office has not ruled out extending the inquiry to insurers. According to the America's Health Insurance Plans, a Washington trade group, major medical insurers do not cover chronic Lyme disease, citing the IDSA guidelines in their medical coverage statements.
Raphael Sticker, president of the International Lyme and Associated Diseases Society (ILADS), which supports the view that chronic Lyme exists and has published its own guidelines, said researchers should welcome the challenge to the power of a large, prestigious society. "When the IDSA guidelines say that there is no chronic Lyme disease (ie no persistent infection with the Lyme spirochete), that stifles scientific inquiry," he said.
The most recent IDSA treatment guidelines for Lyme disease note that "there is no convincing biologic evidence" for chronic infection by Borrelia burgdoferi and others who believe chronic lyme exists point to references that suggest the opposite conclusion.
Blmenthal's investigation is warranted, contended Lorraine Johnson, a healthcare lawyer and member of the advisory board of the Lyme Disease Association, Inc, because members of the IDSA panel which wrote the new guidelines had ties to Lyme product manufacturers that benefit from a limited definition of Lyme disease, which makes it easier to prove efficacy in clinical trials.
Five members of the panel disclose conflicts of interest in the guidelines, such as ties to Baxter vaccines, which is developing a Lyme vaccine. Tom File, who chairs IDSA's practice guidelines committee, defended the organization. "We are very strict in making sure there is full compliance and disclosure of conflict ofinterests, " he said, noting corporations are most likely to turn to scientists with strong expertise for help in developing products. Blaser, for his part, noted that many doctors have their own financial conflicts of interest in arguing chronic Lyme exists, since if the IDSA recognized chronic Lyme, insurers would be more likely to pay for it.
As it stands now, the small group of Lyme specialists who treat chronic Lyme are getting rich from patients who pay out-of-pocket, said Karen Vanderhoof, chairwoman of the Lyme Disease Foundation. "But if the IDSA guidelines provided some flexibility then patients could go to any doctor. Now there's no competition for the chronic patient. IDSA throws them out of the office."
GP Wormser et al, "The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: Clinical practice guidelines by the infectious diseases society of America," Clinical Infectious Diseases 2006;43:1089- 1134. http://www.journals .uchicago. edu/CID/journal/ issues/v43n9/ 40897/40897. html
M Frey et al, "Detection of Borrelia burgdorferi DNA in muscle of patients with chronic myalgia related to lyme disease," Am J Med 1998;104, 591-594. http://www.the- scientist. com/pubmed/ 9674723
RB Stricker et al, "Lyme disease: Point/Counterpoint, " Expert Rev Anti Infect Ther. 2005 Apr;3(2):155- 65 http://www.the- scientist. com/pubmed/ 15918774
Posts: 819 | From New York, NY | Registered: Oct 2001
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northstar
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Last Paragraph:
ouch!
(but perhaps they are setting aside $ to pay for legal fees against the stupid medboards who act like they conspire with insurance companies and IDSA)
voluntary? Sure, but not according to the medboards.
N/
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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bettyg
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ellen, thanks for posting this; surprised at person's name at the end too.
i copied/pasted this to activism too since this will get buried fast.
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shazdancer
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Some of us were wondering if this statement was made as more of a challenge, as in, "Hey, the Lyme docs are making a fine living, because there are so many patients that your point of view doesn't help. Must be something to it. Wht not get on board?"
I dunno for sure -- maybe we should ask her!
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Truthfinder
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Wow, terrific article, Ellen!
Almost makes me want to sing and dance when I think of how the arrogance of the IDSA has come to bite them in the backside.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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treepatrol
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I hope they nailem to the wall.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Yes, that remark from the LDF was certainly unfortunate. I have never heard of anyone charging this much. And if there is, it must be rare. Seems like this kind of number must include testing, probably more testing than doc fees.
[ 08. February 2007, 12:52 PM: Message edited by: lou ]
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CaliforniaLyme
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HOLY HOLY HOLY!!!!!!!!!!!!!!!!!!
What the heck??????????????????
-------------------- 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
Great Article, thanks for posting it Ellen. Lou mentions a specific dollar amount? in the last paragraph? Did something get edited out? or am I just missing it?
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
Oops, you are right...no dollar amounts. I got that elsewhere. Best not to say more, just increases the uproar.
Posts: 8430 | From Not available | Registered: Oct 2000
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pmerv
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posted
Our response:
To the Editor:
With regard to the excellent article by Susan Warner concerning Lyme disease (Feb. 2007), the California Lyme Disease Association (CALDA) fully supports the Connecticut Attorney General's investigation of the Infectious Diseases Society of America (IDSA) because we know intimately of the extreme suffering of patients who are first denied their diagnosis and then, when they are finally diagnosed in the late stages of chronic Lyme, are denied insurance coverage for treatment.
CALDA would like to take issue with the quote in the last paragraph that said: "the small group of Lyme specialists who treat chronic Lyme are getting rich from patients."
When you consider that a normal doctor appointment may last 15 to 20 minutes, Lyme specialists who spend an hour or more with an extremely complicated patient should feel justified in charging proportionately more. First visits often last more than two hours.
If a 20-minute visit with a specialist costs $150 to $250 or more ($450-750/hour), Lyme specialists are entitled to charge the same hourly fee. In fact, we have been informed of charges of $3,500 for a four-hour appointment with a neuropsychiatrist ($875/hr); $500 for a 20-minute "extended" appointment with a cardiologist ($1500/hr); $900 for a ten-minute follow-up visit with a urologist ($5400/hr). We don't know any Lyme specialists who charge exhorbitant rates.
The fee charged by Lyme specialists does not begin to compensate them for the challenges of treating a controversial disease with the IDSA breathing down their necks, uncompensated hours helping patients with insurance denials, frequent phone calls from patients between visits, the risk of collegial censure, medical board prosecutions, possible loss of license, being dropped by insurance carriers and bankruptcy.
It is also a fact that many doctors refuse to see Lyme patients purely on economic grounds because they take so much time both at visits and in between that the doctors lose money with every chronic Lyme patient they accept.
Not only do doctors affiliated with the International Lyme and Associated Diseases Society (ILADS) continue to welcome Lyme patients under these trying circumstances, they have also managed in their spare time to set up ILADS and publish guidelines. They also volunteer as speakers for conferences, run clinical trials and publish articles.
Having Lyme disease is difficult and expensive, but most patients do not blame ILADS doctors for their predicament. ILADS doctors are our lifeline to health and normalcy. They do not deserve abuse for trying to make a living just because they are dedicated to helping people with tick-borne diseases.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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bettyg
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good letter phyllis; loved the price comparisons in it; very effective!
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hshbmom
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Hi fellow lymies,
Please consider that the lady may have been misquoted. Reporters don't have to report exactly what you say; sometimes they put a spin on the author's comment.
Let's give the lady the benefit of the doubt until proven otherwise.
The LDF website has a bunch of accurate Lyme information. Either she was using irony to make a point or she was misquoted.
In all fairness, please contact the lady quoted and see if she was misquoted.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Subject: Corporate Crimefighters of America - February09, 2007 CORPORATE CRIMEFIGHTERS OF AMERICA -- Feb 8, 2006 Exposing the Crimes of UnumProvident and other insurance companies
Webmaster's Comments: Hooray for CT's attorney general, who is fighting the usual medical establishment underdiagnosis of an autoimmune disease (Lyme). Underdiagnoisis or "psych" diagnosis, of course saves insurers hundreds of millions of dollars. Doctors seem very hot to poke fun at autoimmune diseases, and say they aren't real. I don't know whether they are being bribed by insurers (quite likely, given their "arrangements" with drug manufacturers) or are just morons (also likely).
No one asks their doctor if they graduated with honors or at the bottom of their class, after all. I suspect the bottom-feeders go to work for Unum or in underdiagnosis studies funded by insurers.
I wouldn't be surprised if a disabiity insurer wasn't putting money into the Infectuous Disease Society, so they would claim Lyme is "all in your head.". Someone should find out who their donors are and alert the CT Attorney General. He doesn't seem to have concentrated enough on the insurer, and has only gone after drug manufacturers.
But I tend to think that insurance money is at the heart of it. They have more money and a much bigger interest than drug companies in devaluing diagnoses.
The reason I am sending out another newsletter so soon, in fact, is the article below. If you have Lyme disease and have been given the "mental diagnosis" runaround, you should write Mr. Blumenthan per the address above, and alert him to the fact that it is insurers who are behind maldiagnosis even more than drug manufacturers.
I would hate to see him miss the right target. Actually, this is true if you have any autoimmune disease, since the same dirty tricks of "clouding" the diagnosis with "mental sources" to the profit of insurers is used for all of them.
Of course, everyone is "worried" abou the AG'st "interference" with medicine, not realizing that insurers fund a lot of medicine and interfere with it in their own way. Follow the money. If someone who benefits from a particular research result funds it, I am really skeptical about the impartiality of it.
I am sure that doctors working for the nuclear industry would find that gamma radiation is good for you ;') Sometimes we forget all those Nazi doctors with their hideous human experiments in our wish to think all doctors are good and kind. Alas, there are sociopaths in all professions.
The Infecuous Disease Society is trying to sound soooo scientific and impartial and outraged, but like I said, see where their funding is coming from. I'm not saying they are crooks at this point, but certainly someone should look into it. If any funding comes from the insurance industry, I would cast a jaded eye at their conclusions.
The underdiagnosis of autoimmune diseases concerns a great many of our readers. It is endemic and I can tell you from experience that it is often "funded." It's awfully funny all these different experts keep coming down on the side of saving the insurance industry money. Maybe it's just a coincidence. Maybe I'm just cynical. Maybe there really is a Santa Claus.
It is in the interest of all of us to see that yet another autoimmune disease is not underdiagnosed to the profit of the insurance industry, so I hope some of you, especially those with Lyme, but also those with other autoimmune diseases, will look into this. Many of these diseases cross over - usually, if you have one, you are more susceptible to another and nearly everyone with one gets CFS symptoms.
I wrote Mr. Blumenthal, but one letter is only one letter, and I can't do it all. I have yet to see the funding I was asking for so I can't do this full time, and always appreciate help from the group. I'm only one guy. I'm not rich. I may not even be that smart or practical. But I am stubborn ;')
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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bettyg
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nancy, you raised some valid points; being misquoted. i'm not quoted much in the paper, but i sure hate when they write their own stuff and show quotes around it!
neil, good suggestions for more of us to email blementhal even if we don't have kids going to dr. jones.
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pmerv
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She was not misquoted. She is defending her quote saying some LLMDs are charging as much as $5000 and telling patients to mortgage their homes to pay their fees.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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copying other feedback letters written on 1st article below. I also broke up their long paragraphs!
comment: CEO,Promise Research Foundation, PHD,Researcher
[Comment posted 2007-02-14 05:00:56]
Very Interesting article , based on years of Research , this is a topic whose time is long overdue,in finally basing treatment on Biology and not atititudes and Economics. --------------------------
comment: Lyme Disease by Marie Bess
[Comment posted 2007-02-14 13:25:14]
When children are not only suffering but losing their childhood because the local pediatricians are clueless, it is most appropriate for a state attorney general to step in and raise questions. Someone brave and who has a heart needs to do this. Someone who can rise above the muck and see that what is at stake, the suffering of many thousands of people.
This is not politically motivated. It is motivated by a greater need.
The medical community should applaud Richard Blumenthal's action as it can only lead to better medical care for all.
My daughter spent almost 3 years in bed. Local pediatricians, neurologists, and infectious disease specialists had NO TREATMENT to help her. Only an ILADS member, a Lyme literate MD, was able to diagnose and treat her.
Had I taken my daughter to Westchester Medical Center in Valhalla, where the authors of the new guidelines reside, my daughter would still be in bed instead of back in school and back on the honor roll.
The medical community, especially IDSA, should be ashamed of themselves. They have failed to help people in great need. They have only added insult to injury with these preposterous guidelines. I can't imagine why the authors have not been laughed out of town.
The evidence that chronic Lyme disease exists is staggering. How can anyone miss this? Why would anyone miss this?
Everyone in any position of authority should get on Richard Blumenthal's side. Perhaps then we will have a unfied medical community dealing with this insidious disease.
Perhaps then the suffering will end and the children will be safe.
Marie Bess 253 Barger Street Putnam Valley, NY 10579 -------------------------
comment: State official subpoenas infectious disease group by Edward McSweegan
[Comment posted 2007-02-14 16:27:10]
To the Editor:
Last fall, leaders of the Lyme Disease Association (LDA) in New Jersey used the words
unprecedented and historic to describe Connecticut Attorney General Blumenthal's investigation of the Infectious Diseases Society of America's guidelines for Lyme disease (1).
In fact, the LDA had appealed to the Attorney General on behalf of patients and treating physicians; (LDA Statement, November 16, 2006).
This is not the first time, however, that Lyme activists have tried to use legal or political means to rewrite scientific findings that conflict with their own beliefs and opinions .
In 2005, Pat Smith (LDA) and Lorraine Johnson (Calif. LDA) wrote to the CDC alleging that
there is a fundamental lack of transparency, peer review, and accountability; regarding highly influential [Lyme disease] information that is being disseminated.
Patients are being denied essential medical treatment based on information; which has not been subjected to any form of peer review by the broader scientific community.;
Specifically, Smith and Johnson were upset about the content of CDC;s website on Lyme disease symptoms, an issue of CDC;s Morbidity and Mortality Weekly Reports warning about certain diagnostic tests that should not be used for Lyme disease (2), and the NIH Lyme disease web site (www.niaid.nih.gov/dmid/lyme).
In December 2006 the LDA persuaded congressman Chris Smith (NJ) to write to the CDC director to complain about CDC;s website link to the IDSA guidelines, reiterate many of the same allegations made by Smith and Johnson the year before, and suggest that it was nappropriate for CDC to highlight IDSA;s findings to the exclusion of others;
Lyme activists; tactics against peer-reviewed research findings and evidence-based medicine usually occur out of sight of the general public.
Fortunately, Blumenthal;s unprecedented; and historic; investigation has thrown a glaring spotlight on this odd battle over the diagnosis and treatment of a common bacterial infection. And that is good.
By informing the public, the larger scientific community and other public officials, media coverage helped end creationists; effort to undermine science education, and the intimidation of federal scientists by political appointees.
Ultimately, Blumenthal;s high profile investigation may have a similar, though unintended, effect on Lyme disease research and treatment.
References
1. Susan Warner. ;State official subpoenas infectious disease group.; The Scientist, February 7, 2007.
2. ;Notice to Readers: Caution Regarding Testing for Lyme Disease.; MMWR, 54(05);125. February 11, 2005.
Edward McSweegan, Ph.D. ---------------------
comment: Following the Money With Lyme Disease by Jim Mooney
[Comment posted 2007-02-14 18:24:13]
As for the underdiagnosis of Lyme, you might also look at insurance companies. For years, UnumProvident funded massive attempts to prove CFS was just "yuppie flu," and a lot of doctors went along for various reasons, some less seemly than others.
If autoimmune diseases are clouded, disability insurers get to cut off benefits after two years, which is the psychological exclusion limit, rather than have to continue benefits for life, as they would if the disease were judged physical. This saves them a Lot of money. For a long time the CDC even went along with them.
I would certainly be a bit skeptical of their findings about Lyme if the Infectuous Disease Society got insurer funding, and someone should certainly look into this.
When I found my doctor had "arrangements" with various drug manufacturers, I realized why he always pushed the new, more expensive, less-tried drug rather than the older, cheaper, well-tested and just-as-effective drug.
Follow the money. It always leads to the real causes. --
IDSA Guidelines Hurt Patients and Used Trivial Study Numbers by James Schaller MD [Comment posted 2007-02-15 02:41:01]
Dear Ms. Warner,
I used to trust the Papal IDSA guides, but after I watched my children dying, I eventually decided as a research and clinical physician, that thier suffocating highly selective CDC research oriented 2-tier criteria (ELISA first, then a Western Blot with key protiens removed to protect patents?) was clinically useless.
I also watched as my children, and later many patients who were physicians or health care professionals, remain uncured after 30 days of treatment.
It is sad that such dissociated sterile medicine with sadistic rigidity, cannot allow 800,000 USA MD's the chioce in our treatment of the millions who have missed their initial tick bite infection by years, or even decades.
A bacteria with 28 plasmids--the most of any bacteria on the planet--is simply not going to fit thier filtered magical 30 day cure research studies when it is throughout the body in a week.
I have been so distressed at the IDSA lack of clinical leadership that as an ILADS member, I wrote the first up to date textbook on Artemisia which is the top treatment for malaria in the world per WHO and UNICEF .
It is also possibly useful in treating Babesia, a dangerous co-infection found with Lyme.
Then I also wrote the first up to date textbook on Babesia, since IDSA has no insight into the many new species of Babesia which are not even able to be tested by routine labs.
Since yet other co-infections seem to be trivialized by IDSA, I am now doing the most up to date text on the many new human forms of Bartonella , another deer tick and flea co-infection, which has over 200 symptoms and can occasionally cause death.
So it is ILADS members who are adding to a new clinical database, while IDSA insults those who suffer more than the 30 days insurance companies allow, who eagerly quote IDSA "optional" guidelines chapter and verse.
After 30 days, IDSA merely offers psychiatric labels to "chronic Lyme" patients. Because for IDSA, these people do not exist, and therefore are by definition objectified things.
I am confused by IDSA's boast about thier use of 400 studies, not merely because I have two Lyme related small papers in Press with 300 study references, but because it shows thier sloppy biased science.
The best study to date on Chronic Lyme was completed by Dr. Fallon at Columbia University with NIH support. It shows clearly that chronic Lyme exists and extended antibiotic treatment helps. This study has no peer. It was so rigorous only 1/100 people qualified.
Finally, I am amused that of the over 10,000 Lyme disease articles and co-infection articles, the IDSA crack band only used 400.
Since 1/2 were written by this small group of authors, the guideline reviewers, or thier employees, this seems to be more an exercise in narcissism.
It was not a quality literature review, and would have been rejected by any graduate student's doctoral committee, let alone a medical society claiming absolute and inerrant knowledge of an emerging infection.
Of the 200 articles from outside this closed cult, the remaining 100 articles cover Lyme transmission, diagnostics, or treatment.
What happened to co-infection research? Chronic fatigue research? And the many other aspects of Chronic Lyme.
Finally, of the remaining articles, nine were published in an IDSA financed journal, where the peer reviewers are primarily guidelines authors. (IDSA Journals: Clin Infect Dis, J Infect Dis).
This is ultra conservative old boy medicine at its best, when roughly 188 articles out of almost 10,000 relating to Lyme and its co-infections were the independent sliver part of thier guidelines.
The fact these guidelines or directives were curiously and instantaneously embraced by big insurance, who would love to believe in 30 days of magical cures, instead of actual clinical individualized ILADS elite medicine, is highly suspect, and one reason they are under anti-trust investigation.
I have been able to save all of my children and many relatives. Some went to top IVY covered schools and were told this lab or that one was not as good as cheaper labs with troubling performance results.
They were all told they were cured in 30 days or that they never had Lyme. Those who rejected IDSA and had longer treatment now have their lives back, and those who were sold on the short treatment edict still have illnesses rarely found in patients their age. They also all now show neuropsychiatric symptoms of Lyme.
Because Lyme rapidly enters the brain, and since the brain is our most sensitive organ, the brain manifests a wide range of Lyme symptoms long after a 30 day antibiotic treatment, and thus contributes to praxis troubles, decreased learning, divorces, relational impairments, mood suffering, eccentric agitation, addiction, criminally impulsive behavior, and decreased IQ levels which lower work or school capabilities.
This is the fruit of the IDSA tree. I have eaten it in the past and found it rotten.
Best, James Schaller, MD, www.personalconsult.com Florida--the land of a million deer -------------------------------------
comment:
Lyme disease by Patricia V. Smith, President, Lyme Disease Association, Inc .
[Comment posted 2007-02-15 04:25:42]
February 12, 2007
As the president of the national all-volunteer non-profit group, Lyme Disease Association (LDA), composed of patients and families of patients and associated with 23 other Lyme patient groups nationwide, I find that the LDF;s Vanderhoof's reference to physician profiteers in your article on Guidelines is unsupported. The LDF is not an LDA affiliate.
The physicians who treat chronic patients are small in number but are mighty in their mission to treat a patient population that is underestimated, underserved, and under respected.
Many of these doctors have been treating for 15-20 years while the politically charged climate has swirled around them, engulfing them in malpractice and legal storms which have sometimes depleted them financially, emotionally, and physically.
Still, these same physicians and others who publicly support them, continue to treat, facing the same maelstrom while treating.
They treat a disease for which they are subject to ridicule from their less enlightened peers, scrutiny from their medical boards, and rejection by their insurance company plan.
These same doctors selflessly volunteer their time traveling the continent educating other physicians, the public, and government officials.
Many help their colleagues on complicated cases on a daily basis, perform research studies published in respected peer review publications, and grant interviews to educate the public at large as to the spread of this serious disease and the implications for patients who contract it from a tick bite, issues often underrepresented by government entities.
While other doctors may spend 10-15 minutes with a patient who has an uncomplicated condition easily treated with textbook methods, Lyme physicians may spend hours seeing an individual patient who is co-infected with poorly understood emerging pathogens which may be bacterial, viral or other in nature.
Simple math will show that the costs of an extended visit with any physician will be more than the costs for a routine 10 minute visit with a physician, but the hourly rate of a Lyme treating physician will be the same as other specialists.
Logically, extended patient visits also cut down on the number of patients a Lyme treating physician can physically see in a day. Neither scenario equates to getting rich from patients.
True pioneers, these doctors are blazing a trail that those with foresight are already beginning to follow, trying to use 21st century tools, research, and their own good clinical judgment to not only pinpoint the organisms involved but also to forge effective treatment regimens using their own experiences and clinical judgment in lieu of some vital medical research which has been suppressed due to the hostile political climate.
The sad result of all of this is that treating physicians often struggle financially, while those individuals who "yell" the loudest and work the hardest against the treating physicians' quest for answers may have vested interests in vaccines and testing and profit at the expense of patients. ----------------------------
comment:
Lyme specialists do not deserve abuse by Phyllis Mervine
[Comment posted 2007-02-15 04:54:10]
To the Editor:
With regard to the excellent article by Susan Warner concerning Lyme disease (Feb. 2007), the California Lyme Disease Association (CALDA) fully supports the Connecticut Attorney General's investigation of the Infectious Diseases Society of America (IDSA)
because we know intimately of the extreme suffering of patients who are first denied their diagnosis and then, when they are finally diagnosed in the late stages of chronic Lyme, are denied insurance coverage for treatment.
CALDA would like to take issue with the quote in the last paragraph that said: "[T]he small group of Lyme specialists who treat chronic Lyme are getting rich from patients."
When you consider that a normal doctor appointment may last 15 to 20 minutes, Lyme specialists who spend an hour or more with an extremely complicated patient should feel justified in charging proportionately more. First visits often last more than two hours.
If a 20-minute visit with a specialist costs $150 to $250 or more ($450-750/hour), Lyme specialists are entitled to charge the same hourly fee.
In fact, we have been informed of charges of $3,500 for a four-hour appointment with a neuropsychiatrist ($875/hr);
$500 for a 20-minute "extended" appointment with a cardiologist ($1500/hr);
$900 for a ten-minute follow-up visit with a urologist ($5400/hr).
In fact, we don't know any Lyme specialists who charge such exhorbitant rates.
The fee charged by Lyme specialists does not begin to compensate them for the challenges of treating a controversial disease with the IDSA breathing down their necks, uncompensated hours helping patients with insurance denials, frequent phone calls from patients between visits, the risk of collegial censure, medical board prosecutions, possible loss of license, being dropped by insurance carriers and bankruptcy.
All of these "adverse events" are visited with disproportionate frequency on doctors treating people with chronic Lyme disease.
Many doctors refuse to see Lyme patients purely on economic grounds because they take so much time both at visits and in between that the doctors lose money with every chronic Lyme patient they accept. This makes access to care a serious issue for people with chronic Lyme disease.
Not only do doctors affiliated with the International Lyme and Associated Diseases Society (ILADS) continue to welcome Lyme patients under these trying circumstances, they have also managed, in their spare time, to set up ILADS and publish guidelines, volunteer as speakers for conferences, conduct research, run clinical trials, and publish peer-reviewed articles.
Having Lyme disease is difficult and expensive, but most patients do not blame ILADS doctors for their predicament. ILADS doctors are our lifeline to health and normalcy.
They do not deserve abuse for trying to make a living just because they are dedicated to helping people with tick-borne diseases .
In response to Dr. Schaller's comments and IDSA by PJ Langhoff
[Comment posted 2007-02-15 17:23:40]
In response to the commentary entered by James Schaller, MD: Dr. Schaller is a brilliant physician and well-respected lyme patient advocate who has saved untold numbers of lives.
His research, publications on up-to-the-minute information on tick-borne illness is supported by well documented research.
He and the tens of thousands of ILADS members are to be applauded for their willingness to step into the spotlight and teach others that Lyme disease and tick-borne illness is not a 30-day-and-out treatable illness, but a complex, long-term and devastatingly real infectious disease that is a growing international nightmare.
Ditto for treating physicians like Dr. Charles Ray Jones, who is currently being persecuted before the state medical boards of CT for being knowledgeable and willing to successfully treat pediatric lyme patients when no one else will nor has the ability and courage to do so.
The fact that the IDSA and others choose to ignore this fact and hide behind a paltry few and perhaps privately interested studies, is appalling to Lyme patients strugging with physicians who fail to, or purposely refuse to diagnose, test and/or treat their systemic illnesses while simultaneously telling their patients "its all in your head". Hundreds of thousands of patients are NOT DELUSIONAL.
I personally suffered for 12-1/2 years with disability and lyme disease, before finally being diagnosed correctly. The evidence in my case includes a now 15 yr. medical history of symptoms, micrographic peripheral blood smear photography clearly showing Bartonella, anaplasma, Babesia, plasmodium, and lab tests showing definitely present lyme-specific bands.
And yet all these years, I needed no lab tests to confirm what I knew to be true--and I am not a doctor. The fact that myself and two children had to remove ticks from our bodies, followed by the clinical symptoms of rashes, fevers, flu-like symptoms and nearly 80 other symptoms, is enough evidence needed to have a working diagnosis.
I have had lyme since 1992 and it was not until 2005 that one single doctor believed me and agreed with trepidation and convincing laboratory evidence that Lyme and coinfections are what I have been dealing with all these years.
30 Days of antibiotics? Laughable.
Let's try YEARS of antibiotics, IV meds, supplements, "alternative" therapies, herbals and others have STILL not erradicated these so-called "easily curable" infections from my body and the bodies of my two children and thousands of lyme patients, many of whom have already died of their diseases and the disease of ignorance.
I shudder to think what big pharma will do when it has to face the threat of millions with tick-borne illness demanding a CURE, instead of placating the uneducated masses with drugs designed to mask their symptoms, instead of offering a real cure.
Of course, they would naturally lose billions in revenue from the thousands of pharmaceuticals being unwittingly pushed upon these ill patients under the guise of treating misdiagnosed illnesses that they don't actually have--when all along they have been suffering from tick-borne illness.
How sad for us all when we allow a scant few biasly chosen studies by a small group of self-interested parties to dictate for millions that what we otherwise know to be fact, is fiction. -----------------------------
comment:
IDSA Guidelines Hurt Patients and Used Trivial Study Numbers by James Schaller, MD
[Comment posted 2007-02-15 20:57:15]
Dear Ms. Warner,
I used to trust the Papal IDSA guides, but after I watched my children dying, I eventually decided as a research and clinical physician, that their suffocating highly selective CDC research oriented 2-tier criteria (ELISA first, then a Western Blot with key proteins removed to protect patents?) was clinically useless.
I also watched as my children, and later many patients who were physicians or health care professionals, remain uncured after 30 days of treatment.
It is sad that such dissociated sterile medicine with sadistic rigidity, cannot allow 800,000 USA MD's the chioce in our treatment of the millions who have missed thier initial tick bite infection by years, or even decades.
A bacteria with 28 plasmids--the most of any bacteria on the planet--is simply not going to fit thier filtered magical 30 day cure research studies when it is throughout the body in a week.
I have been so distressed at the IDSA lack of clinical leadership that as an ILADS member, I wrote the first up to date textbook on Artemisia which is the top treatment for malaria in the world per WHO and UNICEF.
It is also possibly useful in treating Babesia, a dangerous co-infection found with Lyme.
Then I also wrote the first up to date textbook on Babesia, since IDSA has no insight into the many new species of Babesia which are not even able to be tested by routine labs.
Since yet other co-infections seem to be trivialized by IDSA, I am now doing the most up to date text on the many new human forms of Bartonella, another deer tick and flea co-infection, which has over 200 symptoms and can occasionally cause death.
So it is ILADS members who are adding to a new clinical database, while IDSA insults those who suffer more than the 30 days insurance companies allow, who eagerly quote IDSA "optional" guidelines chapter and verse.
After 30 days, IDSA merely offers psychiatric labels to "chronic Lyme" patients. Because for IDSA, these people do not exist, and therefore are by definition objectified things.
I am confused by IDSA's boast about thier use of 400 studies, not merely because I have two Lyme related small papers in Press with 300 study references, but because it shows thier sloppy biased science.
The best study to date on Chronic Lyme was completed by Dr. Fallon at Columbia University with NIH support. It shows clearly that chronic Lyme exists and extended antibiotic treatment helps. This study has no peer. It was so rigorous only 1/100 people qualified.
Finally, I am amused that of the over 10,000 Lyme disease articles and co-infection articles, the IDSA crack band only used 400. Since 1/2 were written by this small group of authors, the guideline reviewers, or thier employees, this seems to be more an exercise in narcissism.
It was not a quality literature review, and would have been rejected by any graduate student's doctoral committee, let alone a medical society claiming absolute and inerrant knowledge of an emerging infection.
Of the 200 articles from outside this closed cult, the remaining 100 articles cover Lyme transmission, diagnostics, or treatment.
What happened to co-infection research? Chronic fatigue research? And the many other aspects of Chronic Lyme.
Finally, of the remaining articles, nine were published in an IDSA financed journal, where the peer reviewers are primarily guidelines authors. (IDSA Journals: Clin Infect Dis, J Infect Dis).
This is ultra conservative old boy medicine at its best, when roughly 188 articles out of almost 10,000 relating to Lyme and its co-infections were the independent sliver part of thier guidelines.
The fact these guidelines or directives were curiously and instantaneously embraced by big insurance, who would love to believe in 30 days of magical cures, instead of actual clinical individualized ILADS elite medicine, is highly suspect, and one reason they are under anti-trust investigation.
I have been able to save all of my children and many relatives.
Some went to top IVY covered schools and were told this lab or that one was not as good as cheaper labs with troubling performance results. They were all told they were cured in 30 days or that they never had Lyme.
Those who rejected IDSA and had longer treatment now have thier lives back, and those who were sold on the short treatment edict still have illnesses rarely found in pateints thier age.
They also all now show neuropsychiatric symptoms of Lyme.
Because Lyme rapidly enters the brain, and since the brain is our most sensitive organ, the brain manifests a wide range of Lyme symptoms long after a 30 day antibiotic treatment, and thus contributes to praxis troubles, decreased learning, divorces, relational impairments, mood suffering, eccentric agitation, addiction, criminally impulsive behavior, and decreased IQ levels which lower work or school capabilities.
This is the fruit of the IDSA tree. I have eaten it in the past and found it rotten.
IDSA Guidelines Hurt Patients and Used Trivial Study Numbers by NP40
[Comment posted 2007-02-16 04:31:57]
IDSA "Guidelines" ?
Acne - Long-term anti-biotic treatment [months, even years] is fine.
Lyme- Serious bacterial infection, potentially life threatening, no longer than 28 days of anti-biotic treatment. If still symptomatic, disease miraculously morphs into a "autoimmune response".
Cancer patients ? No more than 28 days of chemo ? If still symptomatic-perhaps an autoimmune response ?
It's absurd.
Why don't we just replace doctor's at our office visits with insurance executives. You know, we could save even more on health care costs by eliminating the "middle man". ------------------------------
comment:
Hooray for Dr. James Schaller's article IDSA Guidelines hurting CHRONIC LYME PATIENTS. by Bettyg, Iowa
[Comment posted 2007-02-16 06:30:18]
Congrats Dr. Schaller for your very thoughtful article you wrote on the 06 IDSA Lyme Guidelines which hurt ALL of us CHRONIC LYME patients!
You cited many things that we chronic lyme patients have discussed.
l. Why were only 400 articles used out of OVER 10,000 articles written, and they were all by Idsa mds! Biased; you betcha!
2. I couldn't believe out of 14 mds on IDSA who wrote and signed off on these guidelines, only FIVE treat lyme patients for UNDER 30 DAYS! NONE TREAT CHRONIC LYME PATIENTS; shame shame!
3. Why weren't ANY of our ILADS mds INCLUDED in the decision making to SAVE our precious chronic lyme lives?
4. I've been reading also ALL the recent grant research $$ given to IDSA mds who signed the guidelines: Steere, Wormser, etc.
5. I've read what they hope to do in their studies but WHY over 10 years isn't a study COMPLETED for Steere and Wormser? Due to my advanced neuro lyme in my brain, I apologize if I mixed up your names here, but this is how I remember it!
I believe in studying something; but this is way too long to get results out, and ACTION TAKEN!
Congrats to Dr. Schaller for taking upon HIMSELF to publish co-infection text books on:
* textbook on Artemisia which is the top treatment for malaria in the world per WHO and UNICEF. It is also possibly useful in treating Babesia, a dangerous co-infection found with Lyme
* on Babesia, since IDSA has no insight into the many new species of Babesia which are not even able to be tested by routine labs;
* most up to date text on the many new human forms of Bartonella, another deer tick and flea co-infection, which has over 200 symptoms and can occasionally cause death.
Dr. Schaller, I salue you as ILADS members who are adding to a new clinical database, while IDSA insults those who suffer more than the 30 days insurance companies allow, who eagerly quote IDSA "optional" guidelines chapter and verse.
I am also furious and agree with Dr. Schaller, "IDSA merely offers psychiatric labels to "chronic Lyme" patients. Because for IDSA, these people do not exist, and therefore are by definition objectified things".
We wish that the IDSA members could walk in our chroinc lyme shoes for 1 year; let's see what changes you would make IF the shoe were on the other foot!
FYI, I have had chronic lyme disease for 37 years in Jan. l907. Mine was a result of a bite coming from a tick off a live christmas tree my parents had. We had no animals; it was sub-zero Iowa weather; and no gardening outside for exposure to ticks!
I was misdiagnosed for 34 years by between 40-50 mds/specialists. Yes, they labeled me psychiatric since they couldn't come up with anything.
I was showing all the signs of early-onset Alzheimer's disease which I knew only too well as my brother's wife died 3-15-93 at the young age of 40 from this mind-robbing disease! She had AD between 8-14 years. Mayo Clinic took about 4 months eliminating everything in their autopsy.
I heard about lyme disease and had a western blot igg and igm done by Igenex, Calif. Both were CDC positive. My treating MD of 26 years clinically diagnosed me; both of us were shocked.
I took 20 months of pulsed antibiotics; late had 6 months of supplements galore. I've seen NO improvement from either method. In fact, this is the worst I have been in my 37 years of chronic lyme.
Yes, chronic lyme exists; I'm here to tell you it is and I'll go down fighting to get into REMISSION OR BE CURED!
SOLUTION: I want to see BOTH sides: IDSA and IDLS MDs working TOGETHER with their brilliant minds so we chronic lyme patients can HAVE QUALITY LIFE with our loved ones as each of you take for granted daily!
Please let's UNIT FOR LYME PATIENTS NATIONWIDE! Let's have conferences with BOTH side present, and eliminate the current barriers we have.
We also want to keep precious LYME LITERATE MDS; such as Dr. Charles Roy Jones, Conn; Dr. Joe Jemsek, NC; Dr. Barrascano, and others! These are the types of caring/loving docs who are giving us ALL HOPE! Don't take that away too!
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posted
YEA! ...suck it IDSA! yeh buncha frickin scembegs!
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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