User:Bob the goodwin/sandbox

My Sandbox is a place where I am going to make statements about the Lyme Wars and the associated medicine that I believe I can support with secondary reliable sources. I may put placeholders in temporarily with the notations (Need Ref), (OR), or (Primary), or (Opinion) where I have incomplete work. Please feel free to comment here or on My talk page. Dissent is appreciated. I will not be doing any edits on Wikipedia while the consensus remains that chronic lyme is a fringe opinion. I tested this belief, and believe that is the current consensus. Talk:International_Lyme_And_Associated_Diseases_Society. I repeat, the following is NOT a proposed article, nor I am writing this as a way to promote language in Wikipedia. I am writing this to answer questions I have been given by editors.

Summary
The "Lyme Wars" is an ongoing controversy between two "bitter and vengeful" camps of Lyme disease researchers and doctors about the nature and treatment of chronic sequelae of Lyme disease. http://nymag.com/nymetro/health/columns/bodypolitic/2225/

The majority group, predominantly university-based physicians, consider Lyme disease easily curable with 2-4 week course of antibiotics. In their opinion, chronic sequelae of acute Lyme disease occur infrequently. They are only consequences of Lyme infection, such as autommune reaction, but not the infection.http://nymag.com/nymetro/health/columns/bodypolitic/2225/

The minority group, consisting mostly of practical physicians, insist that Lyme disease bacteria may survive a short course of antibiotics. These surviving bacteria may cause, in their view, the long-term consequences of acute Lyme disease. Hence such cases have to be treated by additional, long-term antibiotic therapy, until the symptoms clear.http://nymag.com/nymetro/health/columns/bodypolitic/2225/

According to the majority opinion: "There has been no clinical trial that demonstrates long-term treatment of Lyme is beneficial." Normal 0          false  false  false    EN-US  X-NONE  X-NONE                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 To this, the proponents of the minority respond that in many cases ("60 scientific studies") standard tests miss the Lyme bacteria. In many patients who went through course of antibiotics but whose symptoms lingered, more advanced tests found remaining Borrelia infection.http://nymag.com/nymetro/health/columns/bodypolitic/2225/

The Lyme Wars may be a Proxy War for larger issues in medicine, including the high cost and low benefit of treating chronic diseases, public information and self-treatment trends on the internet, and pressure on doctor patient relationships and clinical diagnosis.

The history of the misunderstanding
The "Lyme Wars" grew steadily through the 1980s and 1990s as increasing populations of people presented themselves to doctors with clinical symptoms of Lyme disease and doctors began using longer doses of antibiotics. The war entered a hot stage, when a leading establishment figure, the discoverer of Lyme disease Allen Steere wrote in 1993 Journal of American Medical Association had become "overdiagnosed" and overtreated. Steere noted that 57% of the patients referred to his specialized clinic do not have Lyme disease according to the test Steere clinic conducted. 45% of these patients had positve test results in other clinics; however, Steere considered the false positive. . In several responses to JAMA (JAMA. 1993;270(22):2683. doi:10.1001/jama.1993.03510220038019) (JAMA. 1993;270(22):2682-2683. doi:10.1001/jama.1993.03510220038018) (JAMA. 1993;270(22):2682. doi:10.1001/jama.1993.03510220038017) pointed out to several shortcomings in Steere article. Their authors "dismayed to read that Steere et al ignored many of the basic principles of the practice of medicine as well as of good research" For example, Steere appeared to imply that his test for Lyme disease is the best one, with perfect sensitivity and specificity. Other authors "were saddened and disturbed by the article by Steere et al. There exists in the scientific literature ample evidence of persistent chronic infection despite recommended treatment, documentation of seronegativity as a real phenomenon in Lyme disease, sufficient information regarding the mechanisms of evasion of the organism by antibiotics and the immune system, and evidence for the unreliability of diagnostic tests." In 1993, Joeseph Burrascano gave testimony alongside Allen Steere to the Senate, were he asserted that a few researchers discredit opponents to create bias within federal agencies and medical journals in order to promote flawed science. 

The reasons that Allen Steere and Gary Wormser initially rejected the concept that would later be commonly called chronic Lyme disease are not known, but there is an explanation for the current thinking within the IDSA guideline for the treatment of Lyme Disease, namely:


 * Lyme bacteria does not have antibiotic resistance (presumably in vivo)
 * Persistent symptoms of Lyme disease do not correlate with either inflammation or with later objective evidence of disease.
 * improbable that chronic B. burgdorferi infection can occur in the absence of antibodies
 * The only other Spirochete, Syphilis was easily treated with antibiotics.
 * None of the factors exist that allow other infections to survive antibiotics exist with Lyme bacteria, namely:
 * Lyme bacteria does not primarily persists in people with compromised immune systems.
 * Lyme bacteria are not partially damaged by antibiotics, they are killed
 * Available antibiotics are fully effective against Lyme bacteria in vitro.
 * Lyme bacteria are not caused by an intracellular pathogen
 * Lyme bacteria are not involved within a biofilm
 * Lyme bacteria are not on a heart valve.
 * Lyme bacteria are not involved in within a ischemia, foreign body, sequestrum, or frank pus.
 * Lyme bacteria can survive antibiotic treatment when they are in the cystic form, but these have no clinical significance. no cyst involvement in disease

The debate has taken many forms in the following two decades, but the main points of dispute are
 * The Lyme bacteria can evade the immune system. immune evasion by Lyme bacteria
 * The Lyme bacteria is involved with biofilm. Eva Sapi discovers Lyme bacteria biofilms
 * The cystic (and other forms) are resistant to antibiotics and do revert to clinically significant forms. Polish review
 * The bacteria is capable of disrupting the immune system, thus causing the immune system to use different antibodies. not sure, neuro-inflammation by proxy
 * There is heart valve involvement. not sure, heart tissue damage

Post-treatment symptoms were postulated to be auto-immune by researchers who dismiss the existence of chronic Lyme.

The two sides
(no references in this section, will come back)

The mainstream medical view of Lyme disease comes from the IDSA Lyme treatment guideline, written by the following authors:

Wormser GP (New York Medical College), Dattwyler RJ (New York Medical College), Shapiro ED (Yale), Halperin JJ (NYU), Steere AC (Harvard), Klempner MS (UMASS), Krause PJ (Yale), Bakken JS(University of Minnesota), Strle F (Slovenia), Stanek G (Austria), Bockenstedt L (Yale), Fish D (Yale), Dumler JS (Johns Hopkins), Nadelman RB (New York Medical College)

The Guideline governs care throughout all western nations. Although nominally the guideline is written as optional, and physicians are licensed by individual states, in practice they limited physicians and patients choices. Insurance companies used the more restrictive IDSA guidelines to limit coverage for chronic Lyme disease (ref needed), and doctors were intimidated by the investigation or sanctioning of 50 physicians for prescribing longer term treatment approaches to Lyme disease. (ref to Blumenthal press release)

Today the minority opinion comes the ILADS in the US, and the German Borreliosis Society in Europe.

Doctors in the US who treat patients using the ILADS protocol are often referred to as 'Lyme Literate Physicians' or LLMD's. ILADS was founded in 1999 by doctors who aggressively treated Lyme disease in response to the polarization, the state actions against Lyme doctors, and the restrictions on insurance coverage for their patients. The organization ultimately expanded into medical research, training of new LLMDs, lobbying states governments to protect the doctor patient relationship, drafting an alternative treatment guideline for Lyme disease, and advocating against the IDSA Lyme guideline.

The most prominent advocates for ILADS and the existence of chronic Lyme include Dr Fallon (Columbia), and Willy Bergdorfer (Namesake and discoverer of the Lyme bacteria.) Dr. Waisbren is a founding member of IDSA and pro-chronic Lyme, Dr. Auwaerter of Johns Hopkins spoke at an ILADS conference to express the position of the IDSA, and the IDSA guidelines stated it had reviewed scientific data and opinions provided by ILADS.

In 2006 Connecticut attorney general sued the IDSA for antitrust. ) ILADS was a vocal supporter of the suit.    Although the suit was eventually settled, and the IDSA did not substantially change its guidelines, the state actions against Lyme doctors eventually stopped, and ILADS has slowly built a portfolio of research to back up their opposition to the IDSA guidelines.

All three Medical Societies (ILADS, IDSA, GBS) hold medical conventions on Lyme disease around the world.

Patient Activism and the Lyme Loonies
The N.I.H. head of research funding for Lyme disease commented in an email in 2007 his disdain for the “the Lyme loonies.” poughkeepsiejournal He states he received vile, vicious, profane and abusive telephone calls.

It is unlikely that Baker was referring the neuropsychiatric aspects of late stage Lyme disease. Lyme disease: a neuropsychiatric illness However it is observed that Lyme advocates are often working against their own interests with their statements and actions. Controversial treatments and claims are seen across the Internet. New Yorker Michael Specter compares many Lyme advocates unfavorably with early days AIDS activists who were some of the most knowledgeable people in the field. Lyme activists often are associated with conspiracies such as Plum Island (a government bio-warfare that created Lyme), New York Times (they were told not to report on Lyme honestly), N.I.H. (had an agreement with pharmaceutical companies to deny the existence of chronic Lyme disease) New Yorker

The activists have been lumped with other anti-science movements (anti-vaccine and HIV virus deniers) and have been accused of fostering pseudoscientific practices and lobbying for legislation to subvert medicine and science. IDSA guideline authors slam Lyme activists

In response to an unknown document about a Lyme protest at University of Connecticut Health Center in 2007, Professor Durland Fish of Yale University wrote in an email to other IDSA guidelines authors and federal public health officials "This battle cannot be won on a scientific front. We need to mount a socio-political offensive; but we are out-numbered and out-gunned.  We need reinforcements from outside our field." Fish emails

Much of the activism stems from the impression that IDSA guidelines were de-facto policies, as insurance coverage was linked to the guidelines, and because doctors fears sanctions for treating outside the guidelines, (ref to Blumenthal) and so expressed their [Political dissent] through protests political lobbying and public opinion. (possible ref Lyme Disease Update: Science, Policy & Law, published by the Lyme Disease Association.)

Other groups have focused on raising money for research, such as XXX and XXX which provided the initial funding if the Columbia University Lyme and Tick-Borne Diseases Research Center, and TBDA which has helped fund research into Lyme biofilms at the University of New Haven, and has funded the training of 125 LLMDs through ILADS.

High cost and low benefit of treating chronic diseases
The care of individuals with chronic conditions is estimated to account for 78% of health expenditures in the United States and insurance companies have begun to target high cost chronic illness for savings. In the future computerized treatment decision models will anticipate doctors overlooking or overprescribing treatments.Multiple Chronic Conditions: Prevalence, Health Consequences, and Implications for Quality, Care Management, and Costs

As early as the 1990's insurance companies used tightened requirements enough to make insurable treatment rare. Insurance companies understood that only certain people would fight for coverage.

Chronic inflammatory diseases (chronic Lyme, multiple sclerosis, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, lupus, Crohn's disease, HIV or other autoimmune and neurodegenerative diseases) generally damage multiple organs and are presented as multiple simultaneous disease conditions or "Systemic disease". The costs of treating patients with high numbers of conditions can exceed ten times the costs of treating patients without any chronic conditions.

As health care costs continue to rise there will be more pressure to ration treatments that have higher costs and lower benefits.

It is widely agreed that Lyme disease is virtually curable if diagnosed and treated early but that the disease is only diagnosed 10% of the time.

Lyme testing is not considered reliable by some doctors, especially as the disease progresses, and so a clinical diagnosis is made based symptoms and other factors. Symptoms alone cannot differentiate Lyme from other inflammatory systemic diseases due to their similarity. There is a hypothesis and risk that everyone with inflammatory systemic diseases would be drawn to a Lyme diagnosis and many would receive expensive and unwarranted treatment. A Lyme vaccine was developed by some of the authors of the IDSA Lyme treatment guidelines that would have prevented 80% of infections in people who were inoculated. The vaccine was pulled off the market for lack of demand, primarily due to bad publicity in the same year about an unrelated vaccine.

It has been proposed by Dr. Waisbren (IDSA Fellow, and pro-chronic Lyme disease) that doctors should treat Amyotrophic Lateral Sclerosis and Multiple Sclerosis with Anti-Lyme Disease Antibiotics because of the high rate of misdiagnosis, and the low risk of antibiotic treatment.

Prevention is the key to affordable care of chronic disease. Vaccines, early detection and early treatment produce far better outcomes than treating a systemic disease at far lower cost.

Self-treatment trends on the internet
Economic factors are driving some patients towards less treatment for chronic diseases. 15% of the US population does not have medical insurance, and increasing out-of-pocket medical costs   will discourage medical treatment. Insurance companies need to reign in costs, which they accomplish by creating barriers to treatment of expensive diseases.

Lyme disease information, advocacy and medical social networking on the internet are pervasive.Inaccurate information about Lyme disease on the internet is reported in a paper that compared activist websites unfavorably with government sites when they made assertions in conflict with mainstreams medicines and the IDSA Lyme treatment guidelines.

It is therefore natural that people would be increasingly utilizing the internet to make informed decisions on how to use limited resources. Numerous papers show concern for quality and a desire to control the information on the web. The transparency of on open internet seems unethical to some when it undermines mainstream medicines ability to regulate quality and conformity of care. Self-diagnosis is discouraged, and doctors fear untreatable patients will be influenced by unsubstantiated claims seen on the internet. . While he Internet is reshaping the content of the conversation between doctor and patient, for some it may be replacing the doctor.

Chronic Lyme is not accepted by mainstream medicine, but does exist on the Internet, and that information is frustrating the authors of the IDSA Lyme treatment guidelines who believe they are losing the public relations battle. A survey in a Lyme endemic region showed that most people believed that Lyme bacteria can persist after antibiotic treatment, half thought long term antibiotic treatment was sometimes useful, and a quarter thought it was always useful.

Dr. Auwaerter in comments attached to the paper said "They are, in fact, fighting the notion of evidence-based medicine." Patient advocate groups who demonstrate against the IDSA believe they are fighting for access to appropriate medical care.

Doctor Patient Relationships and Clinical Diagnosis
Lyme Doctors use clinical diagnosis (the experience of the doctor and his subjective interpretation of the patients symptoms and history) rather than relying directly on scientifically accepted objective tests they feel are too inaccurate. Some Lyme doctors were subjects of sanctions for not adhering to IDSA treatment standards. The articles and testimony show the defendants arguing on behalf of the traditional doctor patient relationship based on clinical findings and judgment. While the prosecuting doctors were advocating on the side of guidelines, conformity and oversight of treatment options.

Increasingly medical researchers are uninterested in what happens within clinical practices, because of the need for experimental controls. This in turn has only increased animosity, because each believes deeply in their perspective, and yet draw very different conclusions.

Cost reduction strategies used by health insurers (such as managed care and requiring that specialists can only be seen after a referral) have negative impacts on the quality of the doctor-patient relationship.

In the politics of health care, the Doctor Patient Relationship is considered threatened by some. More dissatisfied doctors are converting to concierge medicine practices that are cash only and free from oversight, much like today's Lyme clinics.

The Lyme Wars today
(No References in this section, will come back)

A subculture of LLMDs and Lyme patients has grown up around the internet and patient advocacy groups. For many years patients were careful to protect the names of their physicians. Fringe ideas come from some LLMDs, some advocacy groups, and some patients, and anger and confusion is commonly found on Lyme websites. (OR) However there is also a strong and growing belief within the subculture in both the clinical outcomes, and scientific underpinnings of the LLMD movement. Many LLMDs do not bill insurance companies, and are essentially cash-only clinics.

ILADS has trained hundreds of physicians as LLMDs with financial help from donors, and protests by Lyme advocacy groups against the IDSA continue to grow. Mainstream doctors remain reluctant to treat Lyme disease, and the media attention given to the cause of chronic Lyme disease is growing.

The distrust between the two sides remains high, as is evidenced by explicit attacks within medical research and unfounded mutual accusations of corruption and dishonesty. Meanwhile there is a reluctance of doctors to treat Lyme patients, and despite significant numbers or research papers, almost no change in the treatment of Lyme disease in over a decade. (ref may not be possible, MD fear + unchanged guidance => unchanged treatment)

Meanwhile, the disease rate has steadily increased, there is an emerging understanding that a large majority of patients go untreated, and that a small percentage of these untreated patients will go on to suffer from a debilitating chronic disease.

Controversial Lyme Treatments and Claims
These treatments are not attributable to any medical society. Lyme quackwatch site linked by


 * Malariotherapy
 * Hyperbaric Oxygen Therapy
 * Colloidal Silver
 * Hydrogen peroxide
 * Bismacine
 * Rife machine (<- there is a study pending on this one, and it is an oddly plausible quack)

These claims are not attributable to any medical society. antiscience claims by IDSA panelists.
 * Most patients have only subjective symptoms
 * Incurable illness when not treated very early
 * Causes autism, Morgellon's disease, multiple sclerosis, Parkinson's disease, amyotrophic lateral sclerosis, homicidal behaviour, birth defects, and Alzheimer's disease
 * Serological testing is of no value in the diagnosis of extracutaneous manifestations of Lyme disease
 * IgM testing is appropriate for assessment of patients with illness of long duration
 * Serology is less sensitive for detection of Lyme disease in women than in men

The IDSA case against ILADS
http://www.ncbi.nlm.nih.gov/pubmed/21867956

In a 2011 opinion papter Antiscience and ethical concerns associated with advocacy of Lyme disease. by some authors of the IDSA Lyme Guidelines, a strong case is made against Lyme disease advocacy. While it does not distinguish between the [ILADS] and activists in its general claims it describes a parallel universe of pseudoscientific practitioners, research, publications, and meetings.

The specific claims that are attributable to ILADS are:

Current and Former Board Members Disciplinary Actions
 * Raphael B. Stricker, MD falsified data on retracted NEJM AIDS paper 1991
 * Joeseph Jemsek, MD sanctioned for use of long term antibiotics
 * Bernard Raxlen, MD sanctioned prescribed antibiotics for Lyme Disease which are not acceptable for that purpose
 * Joseph Burrascano MD sanctioned overdiagnosis/treatment of Lyme Disease
 * Richard I. Horowitz sanctioned non-disciplinary action

Use of IGeneX diagnostic tests for Lyme disease
 * IGeneX founder Dr. Nick Harris is a co-author of the ILADS treatment guidelines for Lyme disease
 * IGeneX products spurred a warning from the US Food and Drug Administration and the CDC about the potential unreliability of unvalidated diagnostic tests for Lyme disease
 * IGeneX tests are not compliant with CDC and IDSA standards (April, 2007)
 * IGeneX has been the subject of investigations, but is currently compliant.

ILADS past president had prior research that was shoddy
 * Steven Phillips, MD 1998 new Lyme culture method was proven to be lethal to Lyme bacteria. 2000 unconventional culture method disproven.

ILADS disagrees with the mainstream view of the scientific evidence
 * ILADS supports long term use of antibiotics based on clinical observation on ongoing symptoms.
 * IDSA does not see any evidence that the Lyme bacteria persists after proper antibiotic treatment in a human.

Claims By Lyme Doctors

 * Charles Ray Jones MD said that 80 percent of his patients are children chronic Lyme disease, some who are blind, paralyzed, or wracked with pain. About 75% are now without symptoms.Hartford Courant article


 * Bernard Raxlen, MD says he sees very ill Lyme patients that respond to aggressive long-term antibiotic therapy, "It literally turns their lives around." Chicago Tribune

Terminology used

 * Post Lyme Disease Used to denote post treatment symptoms hypothesized to be autoimmune.
 * Chronic Lyme Disease Used to denote post treatment or untreated late disease symptoms hypothesized to be due to infection.
 * Post-treatment Lyme Disease A compromise term now seen from prominent adherents of both camps.
 * Late stage Lyme Disease Usually associated with untreated Lyme disease or with chronic Lyme disease
 * Co-infections Used to denote bacterial infections that coexist with Lyme Bacteria.
 * Bb name of Lyme Bacteria Borellia Bergdorferi.
 * IDSA camp Represents the mainstream medical position, but specifically the authors of the IDSA guidance on the treatment of Lyme disease. Prominently Steere, Wormser, Auwaerter.
 * ILADS camp Represents the opposing position, see below on ILADS. Prominently Fallon.
 * doctors Represents any physician who is in a position to know the evidence, but generally is seen as working in the mainstream without being outspoken.
 * LLMD Represents any physician who self identifies as a Lyme Literate Physician, and should be considered part of the ILADS camp. (Ref needed to LLMD term used in research)
 * Borrelia synonymous with Bb
 * Borreliosis synonymous with Lyme disease
 * neuroborreliosis is Lyme disease with neurological symptoms
 * carditis is inflammatory disease of the heart, usually but not exclusively associated with Lyme disease.

Chronic Lyme disease is a large and growing public health crisis.

 * The CDC estimates that 300,000 cases of Lyme disease are contracted per year. Only 30,000 confirmed cases are reported to the CDC. CDC Press Release.
 * The infection rate is continuing to climb steadily. Reported cases have continued to climb since discovery.
 * The quality of life for patients with posttreatment chronic Lyme disease (PTLD) as being equivalent to that of patients with congestive heart failure or osteoarthritis, and their physical impairment was “more than 0.5 SD greater than the impairment observed in patients with type 2 diabetes or a recent myocardial infarction” Klempner trial
 * Risk varies by geography Geographic distribution of reported cases of Lyme Disease
 * Chronic Lyme has been shown to be a factor in a significant number of cases of Alzheimer's disease. Chronic spirochetal infectionexpert review
 * Three sudden deaths of Lyme Carditis is a new report (that is likely to cause ripples because it shows that serious cases are slipping through the cracks: Ripples is my opinion) Three sudden cardiac deaths associated with lyme carditis - United States, november 2012-july 2013.
 * Outcomes of Post-treatment Lyme disease are frequently poor. 1994, you already see the divisions between chronic/and post-lyme hypothesis Patients who developed PTLDS had significantly lower life functioning compared to those without PTLDS
 * Europe has significantly different strains of the bacteria, but IDSA guidelines are applied across all western countries. The was minimal European involvement in the IDSA guideline process, and minimal mention of differences in symptomology mentioned in the guidelines (OR).

Evidence of the War in the research archives

 * IDSA Camp Bullying Borrelia
 * Antiscience and ethical concerns associated with advocacy of Lyme disease.
 * Wormser Reply Aug 2013
 * Stricker RB, Johnson L.: Chronic Lyme disease: liberation from Lyme denialism Aug 2013
 * Halperin JJ, Baker P, Wormser GP: Common misconceptions about Lyme disease
 * In your face pro-chronic lyme case report
 * Millions of dollars have been spent refuting ILADS claims, and thousands of hours have been spent responding to false allegations, legal threats, congressional queries
 * 2003 The Lyme Wars: time to listen.
 * 2008 Chronic Lyme disease and the 'Axis of Evil'.

the investigation or sanctioning of 50 physicians for prescribing longer term treatment approaches to Lyme disease
50 physicians in New York, New Jersey, Connecticut, Michigan, Oregon, Rhode Island and Texas have been investigated, disciplined or had licenses revoked over three years. Patient advocate groups found the unprofessional ccnduct actions to be biased.

IDSA antitrust investigation
In 2006, Richard Blumenthal, the Connecticut Attorney General, opened an antitrust investigation against the IDSA, accusing the IDSA Lyme disease panel of undisclosed conflicts of interest and of unduly dismissing alternative therapies and chronic Lyme disease. Patients groups led by the California Lyme Disease Association had urged Blumenthal to take this action, however ILADS was also a vocal supporter of Blumenthal's attempted takedown of the IDSA guideline.

The investigation was closed on May 1, 2008, without charges when the IDSA agreed to submit to a review of its guidelines by a panel of independent scientists and physicians which would occur on July 30, 2009. The investigation raised concerns about conflicts of interest on the part of members of the IDSA panel that were never publicly disclosed. The settlement statement from Blumenthal's settlements mentioned several patient concerns, the use of guidelines to limit patient care because guidelines are treated as mandatory within the medical community, the investigation or sanctioning of 50 physicians for prescribing longer term treatment approaches to Lyme disease, and the refusal of insurance companies to cover treatments not covered by guidelines. [get proper ref to press release http://lymeinfo.wordpress.com/2009/04/13/corrupt-profoundly-flawed-lyme-disease-guidelines/]

The investigation was closed on May 1, 2008, without charges when the IDSA agreed to submit to a review of its guidelines by a panel of independent scientists and physicians which would occur on July 30, 2009. Views on the motivation and outcome of the investigation varied. Blumenthal's press release described the agreement as a vindication of his investigation and repeated his conflict-of-interest allegations.

A Forbes piece described Blumenthal's investigation as "intimidation" of scientists by an elected official with close ties to Lyme advocacy groups. The Journal of the American Medical Association described the decision as an example of the "politicization of health policy" that went against the weight of scientific evidence and may have a chilling effect on future decisions by medical associations.

The medical validity of the IDSA guidelines had not been challenged in the original investigation, and in 2010 the IDSA voted to reissued the 2006 guidelines unchanged by a unanimous vote.

Doctor/Patient Advocacy
ILADS was (and remains) active in working with patient advocacy groups in getting state laws passed that explicitly allow the use of long term antibiotics in the treatment of Lyme disease. The states of Connecticut Rhode Island California Massachusetts and New Hampshire have such laws. Advocacy is continuing in Connecticut, Pennsylvania and Virginia

The Association of American Physicians and Surgeons (AAPS) worked with the ILADS to criticize the IDSA Lyme guidelines with the goal of fostering private, physician-patient centered medicine. AAPS spokesperson Jane Orient, MD, said, "Those doctors have been viciously attacked, even by their own medical boards and by the societies that consider themselves the only source of expertise. Insurance companies are behind this because they don't want to pay for the treatment. Long-term antibiotics can be very expensive."

Impact of War on research and treatment

 * Texas senator testimony
 * Overly restrictive guidelines stifle scientific inquiry Antitrust investigation
 * doctors can’t risk losing their licenses charlotte rhino times
 * Doctors will be reluctant to treat Lyme Disease THE NEW YORK TIMES, 11-10-00, By HOLCOMB B. NOBLE

Safety of long term use of antibiotics

 * EmergencyPreparedness/BioterrorismandDrugPreparedness/ucm072755.htm cited by GBS for long term antibiotics safety

BELOW ARE UNCHECKED REFERENCES FROM GBS Guidelines demonstrating safety and effectiveness of long term antibiotics.
 * CIMMINO, M. A.; ACCARDO, S.: Long term treatment of chronic Lyme arthritis with benzathine penicillin. Ann Rheum Dis 51 (1992), 1007–1008


 * CLARISSOU, J.; SONG, A.; BERNEDE, C.; GUILLEMOT, D.; DINH, A.; ADER, F.; PERRONNE, C.; SA- LOMON, J.: Efficacy of a long-term antibiotic treatment in patients with a chronic Tick Associated Poly-Organic Syndrome (TAPOS). Med Mal Infect 39 (2009), 108–115. http://dx.doi.org/10.1016/j.medmal.2008.11.012


 * COOPER, C.: Safety of Long Term Therapy with Penicillin and Penicillin Derivatives. FDA, US Food and Drug Administration (2001), Dec. 6. http://www.fda.gov/Drugs/- EmergencyPreparedness/BioterrorismandDrugPreparedness/ucm072755.htm


 * DATTWYLER, R. J.; HALPERIN, J. J.; PASS, H.; LUFT, B. J.: Ceftriaxone as effective therapy in refractory Lyme disease. J Infect Dis 155 (1987), 1322–1325


 * DONTA, S. T.: Macrolide therapy of chronic Lyme Disease. Med Sci Monit 9 (2003), PI136–PI142


 * FALLON, B. A.; KEILP, J. G.; CORBERA, K. M.; PETKOVA, E.; BRITTON, C. B.; DWYER, E.; SLAVOV, I.; CHENG, J.; DOBKIN, J.; NELSON, D. R.; SACKEIM, H. A.: A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology 70 (2008), 992–1003. http://dx.doi.org/10.1212/01.WNL.0000284604.61160.2d


 * GASSER, R.; DUSLEAG, J.: Oral treatment of late borreliosis with roxithromycin plus co- trimoxazole. Lancet 336 (1990), 1189–1190 (


 * GASSER, R.; REISINGER, E.; EBER, B.; POKAN, R.; SEINOST, G.; BERGLÖFF, J.; HORWARTH, R.; SE- DAJ, B.; KLEIN, W.: Cases of Lyme borreliosis resistant to conventional treatment – Im- proved symptoms with cephalosporin plus specific beta-lactamase inhibition. Microb Drug Resist 1 (1995), 341–344 (


 * KLEMANN, W.; HUISMANS, B.-D.: Patienten mit Erreger-Direktnachweis bei chronischer Lyme-Borreliose – Klinik, Labordiagnostik, Antibiotika-Therapie und Krankheitsver- lauf. Eine retrospektive Studie. Umwelt-Medizin-Gesellschaft 2 (2009), 132–138


 * STRICKER, R. B.; GREEN, C. L.; SAVELY, V. R.; CHAMALLAS, S. N.; JOHNSON, L.: Safety of intra- venous antibiotic therapy in patients referred for treatment of neurologic Lyme dis- ease. Minerva Med 101 (2010), 1–7 (

Evidence for and against the use of long term antibiotics for treatment of chronic Lyme disease
The highest quality primary study that showed some effectiveness of antibiotics was done by Fallon. The study showed that the antibiotics were effective until they stopped being used. Fallon is respected by both sides (my opinion) because he was trying to find patients who met the mainstream restricted guidelines for diagnosis and treatment. (Columbia Lyme Center) ILADS Camp primary study often cited by both sides: Fallon, A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy.

Secondary Reviews that state that antibiotics are unwarranted because the benefit did not persist.
 * Auwaerter: Point: antibiotic therapy is not the answer for patients with persisting symptoms attributable to lyme disease.
 * Wormser: Antibiotic treatment of animals infected with Borrelia burgdorferi.

Secondary Reviews that state that antibiotics may be effective in treating ongoing Lyme infection
 * Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials.
 * Counterpoint: long-term antibiotic therapy improves persistent symptoms associated with lyme disease.
 * Polish journal, Failures of antibiotic treatment in Lyme arthritis
 * Fallon: rebuttal and review

Antibiotics and Lyme carditis. Carditis may not be primarily chronic, there is some debate.
 * primary case report of cured Lyme carditis with antibiotic therapy.
 * secondary review of Lyme Carditis
 * Polish journal: hypothesizing chronic Lyme presence: Cardiac manifestations of Lyme borreliosis

Evidence for and against persistent infection (chronic lyme) vs. autoimmune response (post lyme disease)
Secondary reviews that state lack of proof and lack of belief in persistent infection
 * There are many. will get to it.

Secondary reviews that support persistent infection
 * Review of evidence for immune evasion and persistent infection in Lyme disease
 * Borrelia burgdorferi aggrecanase activity: more evidence for persistent infection in Lyme disease
 * Proof That Chronic Lyme Disease Exists

Evidence of Physician Practices
With competing guidelines, studies have shown various rates of agreement and compliance with the dominant medical position, the IDSA guidelines.


 * Doctors bucking Lyme Protocols
 * 1994 study of doctors aggressive treatments
 * 1996 study saying 57% of doctors prescribe antibiotics for more than 3 months for Lyme
 * Pro-IDSA 2011 study shows 53% of doctors think chronic Lyme does not exist

UNVERIFIED REFERENCES IN ILADS TREATMENT GUIDEDLINES SHOWING DOCTORS USE LONG TERM ANTIBIOTICS
 * Feder HM Jr. Differences are voiced by two Lyme camps at a Connecticut public hearing on insurance coverage of Lyme disease. Pediatrics 105(4 Pt 1), 855–857 (2000).
 * Fallon BA, Tager F, Keilp J, Weiss N, Liebowitz MR, Fein L, Liegner K. Repeated antibiotic treatment in chronic Lyme disease. J. Spiro Tick Dis. 6, 94–102 (1999).
 * Battaglia HR, Alvarez G, Mercau A, Fay M, Campodónico M. Psychiatric symptomatology associated with presumptive Lyme disease: clinical evidence. J. Spirol. Tick Dis. 7, 22–25 (2000).
 * Fallon BA. Chronic Lyme Disease Research Study. A double-blind placebo-controlled randomized clinical trial evaluating the efficacy of tenweeks of iv. ceftriaxone and effects on brain imaging. Enrollment since 2000.
 * Cameron DJ. Lyme Disease Retreatment Study. A double-blind placebo-controlled randomized clinical trial evaluating the efficacy of oral amoxicillin for seropositive and seronegative Lyme disease. Enrollment since 2001.
 * Peña CA, Mathews AA, Siddiqi NH, Strickland GT. Antibiotic therapy for Lyme disease in a population-based cohort. Clin. Infect. Dis. 29, 694–695 (1999).
 * Wahlberg P, Granlund H, Nyman D, Panelius J, Seppala I. Treatment of late Lyme borreliosis. J. Infect. 29, 255–261 (1994).
 * Donta ST. Tetracycline therapy for chronic Lyme disease. Clin. Infect. Dis. 25(Suppl. 1), S52–S56 (1997).

Lyme Literate Physician (LLMD) Training
125 physicians have completed a three week course that included ILADS class room studies, and a week working alongside the most experienced LLMDs.TBDA LLMD Training

How many has ILADS trained???

Chronic Lyme Diagnosis and Treatment
Burrascano and Herxheimer

Unsupported and Inflammatory Claims

 * The Government created Lyme disease at Plum Island, NY
 * UnderOurSkin has good points but many inaccuracies and is highly inflammatory (OR)
 * Financial conflicts of interest within the IDSA Lyme guidance group.
 * Fee based specialty Lyme clinics and labs are parasites. Forbes anti-chronic Lyme article

Chronic Lyme and LLMDs in RS Media

 * Forbes 2007 anti-chronic Lyme
 * New Yorker 2013 pro-chronic Lyme
 * Boston Herald Story of ILADS founding
 * 2013 pro-chronic Lyme video Poughkeepsie Journal
 * 2013 Poughkeepsie Journal, “Chronic Lyme disease: Is it real? Officials say no, but some patients say yes – and demand a say” by Mary Beth Pfeiffer
 * NYTIMES
 * Under Our Skin Vanity Fair Review  "partisan, manipulative, and prone to conspiracy" (The Lancet Infectious Diseases)
 * Chicago Tribune 2010 anti-chronic Lyme

Geographic distribution And time series of evolving neurological diseases

 * lyme us distribution
 * Multiple Sclerosis us distribution
 * Schitzophrenia us distribution
 * autism us distribution


 * Autism rate time series
 * Lyme rate time series.
 * Diseases not showing significant age adjusted changes over time: schizophrenia, Alzheimer's, Multiple Sclerosis, ADHD

Public cases of chronic lyme

 * Forbes/JPMorgan, note a key person was out of work with Lyme and returned after 1-2 years.
 * David Roth - runs $100B+ real estate fund - highlighted in New Yorker article
 * Amy Tan author story

Below are references to look into....
 * Alice Walker Pulitzer prize winning author
 * David Letterman
 * Yolanda Foster

Patient Advocacy Organizations

 * The Lyme Disease Network : Pro-Chronic Lyme Education and Prevention
 * American Lyme Disease Foundation : Anti-Chronic Lyme Education and Prevention
 * Pro-Chronic Lyme Lyme Disease Support Network
 * Formerly CALDA. They convinced Blumenthal to sue IDSA. Active in demonstrations

Research Organizations

 * Lyme Disease Association : Co-founded the Columbia Lyme Center
 * Lyme Research Alliance, Formerly Time for Lyme : Co-founded the Columbia Lyme Center
 * The Lyme Disease Foundation (LDF)
 * LymeMD : Research
 * Tick Borne Disease Association Biofilm research and LLMD training

Demonstrations
Kenneth B. Liegner, MD (need better link)

END OF ARTICLE
old prose below for future harvests.

ILADS
The International Lyme And Associated Diseases Society (ILADS, pronounced ) is a medical society and advocacy group which advocates for greater acceptance of the controversial medical entity of chronic Lyme disease and argue that the traditional approach to diagnosis and treatment, put forth by most American physicians, all but guarantees failure.

Background
Lyme disease is not well understood, can not be reliably detected, and sometimes has serious long term symptoms that are resistant to treatment. [references probably fallon, and others] It is reported that 300,000 people contract the disease each year, but only 10% of that number are reported to the CDC as diagnosed cases of Lyme. [CDC reference]. Since the day the disease was discovered in 1978 through today there are a large number of untreated cases of Lyme disease, as well as cases of treated Lyme disease that continued to have serious symptoms. Late stage Lyme disease can have symptoms similar to many other diseases, such as multiple sclerosis, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, lupus, Crohn's disease, HIV or other autoimmune and neurodegenerative diseases.

The "Lyme Wars" grew steadily through the 1980s and 1990s as increasing populations of people presented themselves to doctors with clinical symptoms of Lyme disease and doctors began using longer doses of antibiotics. Allen Steere wrote in 1993, that Lyme disease had become "overdiagnosed" and overtreated. . Clinical diagnosis in medicine is not rare, but infectious diseases are very hard to treat with out objective evidence that an infection is actively causing disease. [made this up, may need to drop.]

ILADS was founded in 1999 by physicians and academics who believe mainstream medicine is too conservative in its treatment of Lyme. Some of those physicians had been treating Lyme disease for two decades. The same year saw the first protests by Lyme patient activist against Allen Steere due to concerns his treatment guidelines were causing insurance companies to refuse coverage. The protesters claimed that Dr. Steere's testimony against their doctors before medical licensing boards had caused some of them to stop giving aggressive treatments.

Doctors who are members of ILADS, or who have been trained by them are often known as "Lyme literate Medical doctors." or LLMD's.

2000 IDSA Guidelines
In 2000, The Infectious Diseases Society of America published their Practice guidelines for the treatment of Lyme disease. [Clean ref needed for (Clin Infect Dis 2000; 31[Suppl 1]:1–14).] In those guidelines, IDSA stated that there was no convincing evidence for the existence of chronic symptomatic B. burgdorferi infection, and that the risks of long-term antibiotic therapy do not outweigh the benefits.

ILADS criticized the IDSA for ignoring the "compelling, peer-reviewed, published evidence" of chronic Lyme disease, and ultimately published their own guidelines formulated from scientific evidence in 2006.

Doctor/Patient Advocacy
ILADS was (and remains) active in getting state laws passed that explicitly allow the use of long term antibiotics in the treatment of Lyme disease. The states of Connecticut Rhode Island California Massachusetts and New Hampshire have such laws. Advocacy is continuing in Connecticut, Pennsylvania and Virginia

The [Association of American Physicians and Surgeons] (AAPS) worked with the ILADS to criticize the IDSA Lyme guidelines with the goal of fostering private, physician-patient centered medicine. AAPS spokesperson Jane Orient, MD, said, "Those doctors have been viciously attacked, even by their own medical boards and by the societies that consider themselves the only source of expertise. Insurance companies are behind this because they don't want to pay for the treatment. Long-term antibiotics can be very expensive."

The 2006 IDSA Treatment Guidance and 2006 ILADS Treatment Guidance
In 2006 updated treatment guidance was published by the IDSA, and at approximately the same time the ILADS published their first treatment guidance based on a review of the scientific evidence.

The majority of physicians support the IDSA guidelines, and prior to 2006 ILADS had limited its role to criticizing the IDSA guidelines. The 2006 Report in 2007 many of the authors of the IDSA guidance published a paper highly critical of the use of long-term antibiotics in the treatment of Lyme Disease. In this paper they clearly state that the term "chronic Lyme disease" is not recognized in the medical literature and specifically identify the small number of self described "Lyme literate physicians" who treat patients who have no objective evidence that they have been infected with Lyme. ILADS guidelines do support clinically diagnosis of Lyme, as they claim serological tests are unreliable.

The established medical opinion is that there are no scientific studies that show any connection between the clinic symptoms and Lyme bacteria, and as a result the ILADS guidelines were causing a number of serious ailments to be mistreated as Lyme, which is both unethical and dangerous. It is recommended that patients who show symptoms similar to late stage Lyme, but who have been treated should only be given palliative care, as other treatment will be unsuccessful and give false hope.

ILADS disagrees, and a minority of doctors does treat chronic Lyme disease based on a clinical diagnosis with long term antibiotics and gives evidence that many (but not all) improve [show ref here.]

A crucial and unanswered question is whether Lyme bacteria can survive antibiotic treatment and remain viable as a pathogen, or if the few people who remain sick after treatment are simply experiencing an autoimmune reaction to the initial infection that eventually clears.[wormser ref, fallon or ny post ref]

doctors associated with the (IDSA)state that no viable Lyme bacteria exists in a human after a short course of antibiotics. Several mice and primate studies have seemed to show that bacteria survives exposure to antibiotics, however there are questions about whether the bacteria was viable, how well the study was implements, and its applicability to humans. [Wormser rebuttal] It is generally believed that dead bacteria generate a autoimmune response, and this has been demonstrated by detecting Lyme antigens after treatment cleared the bacteria. [See Yale mouse antigen study.] This study too was challenged for failing to prove the bacteria was not longer viable when the antigens were detected. [McDonald ref].

The minority believes that numerous animal studies have shown that the Lyme bacteria very quickly establishes itself in the body in a way that protects in from antibiotics. Lyme bacteria has been shown to colonize into biofilms that have significant protection against bacteria. [ref]

IDSA antitrust suit
In 2006, Richard Blumenthal, the Connecticut Attorney General, opened an antitrust investigation against the IDSA, accusing the IDSA Lyme disease panel of undisclosed conflicts of interest and of unduly dismissing alternative therapies and chronic Lyme disease. Patients groups led by the California Lyme Disease Association had urged Blumenthal to take this action, however ILADS was also a vocal supporter of Blumenthal's attempted takedown of the IDSA guideline.

The investigation was closed on May 1, 2008, without charges when the IDSA agreed to submit to a review of its guidelines by a panel of independent scientists and physicians which would occur on July 30, 2009. The basis of the lawsuit rested on conflicts of interest that were never publicly exposed. The settlement statement from Blumenthal's settlements mentioned several patient concerns, the use of guidelines to limit patient care because guidelines are treated as mandatory within the medical community, the investigation or sanctioning of 50 physicians for prescribing longer term treatment approaches to Lyme disease, and the refusal of insurance companies to cover treatments not covered by guidelines. [get proper ref to press release http://lymeinfo.wordpress.com/2009/04/13/corrupt-profoundly-flawed-lyme-disease-guidelines/]

The investigation was closed on May 1, 2008, without charges when the IDSA agreed to submit to a review of its guidelines by a panel of independent scientists and physicians which would occur on July 30, 2009. Views on the motivation and outcome of the investigation varied. Blumenthal's press release described the agreement as a vindication of his investigation and repeated his conflict-of-interest allegations.

A Forbes piece described Blumenthal's investigation as "intimidation" of scientists by an elected official with close ties to Lyme advocacy groups. The Journal of the American Medical Association described the decision as an example of the "politicization of health policy" that went against the weight of scientific evidence and may have a chilling effect on future decisions by medical associations.

The medical validity of the IDSA guidelines had not been challenged in the original suit, and in 2010 the IDSA voted to reissued the 2006 guidelines unchanged by a unanimous vote.

ILADS Annual Lyme Disease Conference
Since 2000 ILADS has held an annualLyme Disease Conference to promote research and training in the treatment of Lyme disease including chronic Lyme disease.

The 2013 Lyme Disease Conference was held in San Diego Oct 17-19 2013. The conference had 420 attendees and 32 speakers.

Notable Past speakers have included:


 * Willy Bergdorfer, who discovered the Lyme Bacteria (Keynote speaker 2008)
 * Brian Fallon, Director of the Columbia University Lyme and Tick-Borne Diseases Research Center (2012)
 * Paul Auwaerter, MD, (Current Director of Infectious Diseases and Professor at Johns Hopkins University) Treatment: the IDSA Perspective. (2007)
 * Eva Sapi, PhD, (Discovered Lyme bacteria biofilm antibiotic resistance). (2013)

Physician Training

 * section on the hundreds (or thousand) LLMDS trained by ILADS

Columbia
Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue. [mfix this]
 * Section on Columbia Lyme center as an organization that does collaborative work in chronic lyme

Borreliose-Gesellschaft
German Chronic Lyme Guidelines you will see that the Deutsche Borreliose-Gesellschaft,
 * Section on group similar to ILADS in europe

David Roth
David Roth
 * Prominent activist funding ILADS LLMD training and Eva Sapi research. The heading will be the name of his organization, not him.

In the media
Pro LLMD article in New Yorker anti LLMD article in Forbes One or two other recent and well researched articles. I can't skip under-my-skin, it is too big, hope to find debunking sources.

Criticisms of ILADS

 * IDSA had some specific harsh words about some past practices
 * There may or may not be some sources on some of the fringe element within IDSA that is well sourced.