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International Lyme And Associated Diseases Society

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The Updated ILADS Clinical Guidelines – Daniel J. Cameron, MD

The International Lyme and Associated Diseases Society is a non-profitadvocacy group which advocates for greater acceptance of the controversial and unrecognized diagnosis “chronic Lyme disease”. ILADS was formed by advocates for the recognition of “chronic Lyme disease” including physicians, patients and laboratory personnel, and has published alternative treatment guidelines and diagnostic criteria due to the disagreement with mainstream consensus medical views on Lyme disease.

A 2004 article in the Pediatric Infectious Disease Journal on the prevalence of inaccurate online information about Lyme disease cited the ILADS website as a source of such inaccurate material.

International Lyme And Associated Diseases Society

The International Lyme and Associated Diseases Society is a non-profitadvocacy group which advocates for greater acceptance of the controversial and unrecognized diagnosis “chronic Lyme disease”. ILADS was formed by advocates for the recognition of “chronic Lyme disease” including physicians, patients and laboratory personnel, and has published alternative treatment guidelines and diagnostic criteria due to the disagreement with mainstream consensus medical views on Lyme disease.

A 2004 article in the Pediatric Infectious Disease Journal on the prevalence of inaccurate online information about Lyme disease cited the ILADS website as a source of such inaccurate material.

International Lyme & Associated Diseases Society

The International Lyme & Associated Diseases Society a small medical society comprised of accomplished scientists, medical experts and practicing physicians is proving to be a disruptive force in the conversation around the treatment of Lyme disease. With more than 200,000 new cases reported every year, Lyme disease is one the fastest-growing infectious disease in the country. Contrary to popular belief, it is a complex disease that can be easily misdiagnosed, even in its early stages. Lack of reliable diagnostic tests and variations in symptoms exacerbate treatment challenges.

Th medical community is divided when it comes to treatment recommendations. Mainstream organizations such as The New England Journal of Medicine, and the National Institute of Health and myriad infectious disease specialists adhere to the point of view that Lyme is easy to diagnose and treat. In contrast, ILADS physicians have ample scientific evidence that Lyme, if not properly treated in its early stages can develop into a chronic condition with debilitating symptoms. These symptoms often mimic serious illnesses due to symptoms such as extreme fatigue experienced by those multiple sclerosis, physical dysfunction comparative to patients with congestive heart failure and neurological impairment similar to ALS. Yet, the mainstream medical community refuses to acknowledge the existence of chronic Lyme disease.

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    International Lyme & Associated Diseases Society

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Recommended Reading: Do At Home Lyme Disease Tests Work

Call Ahead And Ask Questions

Even if you find a doctor who specializes in treating tick-borne diseases, you will want to ask some questions before making an appointment and committing your time and money. A few basic questions to consider asking upfront include the following:

  • What is your experience in treating patients with tick-borne diseases?
  • How do you diagnose diseases? Do you use any specific labs or lab tests to confirm diagnosis?
  • Do you test for coinfections?
  • Do you use traditional antibiotics and/or herbals?
  • Do you have any patient success stories you can share?
  • Do you strictly adhere to CDC test interpretation criteria or are you open to alternative criteria?

If youd like to find a LLMD and want to know more about how to vet them, read the Tick Talk blog, What Makes a Doctor Lyme Literate?

The 2004 Highlights Included:

The more you know...
  • Laboratory testing is meant to contribute to rather than to supersede a physicians judgment.
  • Clinical judgment is necessary to identify individuals who may benefit from antibiotics to avoid preventable persistent, recurrent, and refractory Lyme disease.
  • Empiric treatment should be considered as routine treatment of patients for whom Lyme disease is a likely diagnosis.
  • The previously recommended practice of stopping antibiotics to allow for a delayed recovery is no longer recommended for patients with persistent, recurrent and refractory Lyme disease.
  • Duration of therapy should be guided by clinical response rather than any arbitrary 30-day treatment course.
  • A reasonable course would be to continue therapy to treat Lyme disease, after clinical and laboratory abnormalities are resolving and symptoms have resolved.
  • Indications for retreatment should be broadened from meningitis, heart block, and arthritis to include symptomatic presentations.
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    Treatment Starts With Accurate Diagnosis

    The only way to get the proper treatment for your tick-borne disease is to get the right diagnosis in the first place and one of the best ways to do that is, if possible, to see a physician whos experienced with tick-borne diseases. Accurate diagnosis also requires high quality testing at a reputable lab. Learn more about why doctors and patients trust the tests offered by IGeneX.

    Lyme Disease Basics For Providers

    A Brief Primer by International Lyme and Associated Diseases Society

    ILADS works toeducate and support medical professionals in order to facilitate their provision of timely and effective care for patients with Lyme and other tick-borne diseases. Many Lyme patients see multiple providers over months or years before being accurately diagnosed. Further, many Lyme patients suffer from long term health problems problems that might have been prevented with early and effective treatment.

    This brief primer, written for healthcare providers, gives an overview ofthe epidemiology, transmission, diagnosis and treatment of Lyme and associated diseases. For more in-depth education and training in the treatment of Lyme, we strongly recommend our Lyme Fundamentals Course, Provider Training Program and Scientific Conferences.

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    Business Master File Data

    Below are some key data points from the Exempt Organization IRS Business Master File for this organization. Learn more about the BMF on the IRS website

    Activities:

    Activity data not reported from the IRS

    Foundation Status:

    All organizations except 501

    Affiliation:

    Independent – the organization is an independent organization or an independent auxiliary .

    Clinical Judgment And Shared Decision

    Treatment Decisions for Lyme Disease
    • Given the number of clinical variables that must be managed and the heterogeneity within the patient population, clinical judgment is crucial to the provision of patient-centered care.
    • Based on the GRADE model, ILADS recommends that patient goals and values regarding treatment options be identified and strongly considered during a shared decision-making process.

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    Identify Doctors Trained In The Diagnosis And Treatment Of Tick

    You can access a variety of online resources and directories to locate doctors who are specifically trained in identifying and treating tick-borne illnesses. These do not have to be infectious disease specialists they can be physicians from any practice area who simply have extensive experience with tick-borne diseases.

    It is particularly important to find a Lyme expert if you suspect that you may have Lyme disease, since it is the most frequently misdiagnosed of all tick-borne diseases. Finding a Lyme-literate medical doctor a physician who is familiar with the vast range of symptoms that may indicate infection at various stages of the disease, as well as potential coinfections and other complexitiescan help ensure that you get the right treatment, right away.

    To find a doctor who is also a Lyme expert, you may want to explore the following resources:

    Note: Some of these organizations may require you to submit a form or create a login to access their databases.

    Q2 Should The Treatment Of An Em Rash Be Restricted To 20 Or Fewer Days Of Oral Azithromycin Cefuroxime Doxycycline And Phenoxymethylpenicillin/amoxicillin

    Organizational values

    The panel placed a high value on avoiding both the unnecessary progression from a potentially curable infection to one that is chronic and the morbidity and costs associated with chronic disease. The panel also placed a high value on the ability of the clinician to exercise clinical judgment. In the view of the panel, guidelines should not constrain the treating clinician from exercising clinical judgment in the absence of strong and compelling evidence to the contrary.

    Recommendation 2a

    Treatment regimens of 20 or fewer days of phenoxymethyl-penicillin, amoxicillin, cefuroxime or doxycycline and 10 or fewer days of azithromycin are not recommended for patients with EM rashes because failure rates in the clinical trials were unacceptably high. Failure to fully eradicate the infection may result in the development of a chronic form of Lyme disease, exposing patients to its attendant morbidity and costs, which can be quite significant. .

    Role of patient preferences
    Recommendation 2b
    Role of patient preferences

    Moderate: See recommendation 2a.

    Recommendation 2c
    Role of patient preferences

    Low: The benefits of monitoring the response to treatment clearly outweigh any attendant risks associated with monitoring.

    Recommendation 2d
    Role of patient preferences
    Recommendation 2e
    Role of patient preferences
    Recommendation 2f
    Role of patient preferences

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    Diversity Equity & Inclusion

    This organization has not provided information regarding the diversity, equity and inclusion practices it is presently implementing. As such, the organization has not earned a score on this metric. Charity Navigator believes nonprofit organizations implementing effective DEI policies and practices can enhance a nonprofit’s decision-making, staff motivation, innovation, and effectiveness.

    Lyme 101 Series At Iladef

    International Lyme and Associated Diseases Society Inc ...

    ILADS efforts to increase the level of understanding and expertise about Lyme and associated diseases within the medical community are in service of a larger goal — to improve care for patients with tick-borne infections. ILADS recognizes that the person most impacted by the onset of Lyme is the patient. Our members are dedicated to shared decision making, which in addition to the best scientific evidence and clinical expertise, takes into account the patients values and preferences in deciding among available treatment options. Informed patients are better able to participate in their care, and better able to navigate a medical structure in which Lyme and its associated diseases are often poorly understood.

    Our sister organization, the International Lyme and Associated Diseases Education Foundation has created a series of materials Lyme Disease 101 designed to equip any patient, or member of the media or public, with the basic facts about Lyme disease and Lyme care.

    Lyme Disease FAQ

    Public awareness of Lyme and its effects is one of the most important steps we can take to reducing the incidence of Lyme and other tick-borne diseases.

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    Evidence Assessments And Guideline Recommendations In Lyme Disease: The Clinical Management Of Known Tick Bites Erythema Migrans Rashes And Persistent Disease

    Daniel J. Cameron, MD MPH Lorraine B. Johnson, JD Elizabeth L. Maloney, MD

    The 2014 ILADS Treatment Guidelines address three clinical questions the usefulness of antibiotic prophylaxis for known tick bites, the effectiveness of erythema migrans treatment, and the role of antibiotic re-treatment in patients with persistent manifestations of Lyme disease.

    Ilads Lyme Disease Treatment Guidelines

    The latest ILADS Lyme Disease Treatment Guidelines were published in 2014 in an open access journal. The guidelines cover three common issues faced by clinicians: management of a known tick bite, antibiotic treatment of patients with erythema migrans rash, and management of patients who remain ill following antibiotic therapy for Lyme disease.

    Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert review of Anti-Infective Therapy.

    Cameron DJ, Johnson LB, Maloney EL.

    2014 Sep 12:1103-35.

    Below is an abstract of the guidelines with a link to the full journal publication.

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    Ilads Campaign Highlights Importance Of Doctor

    Bethesda, MD, December 9, 2021 The International Lyme and Associated Diseases Society is running a powerful public awareness campaign to highlight the importance of doctor-patient relationships in the treatment of Lyme and other chronic diseases. The campaign debuted this week on a jumbotron in New York Citys Times Square.

    The jumbotron video highlights the challenges doctors face from bureaucratic institutions when trying to treat patients. The video sends viewers to the ILADS.ORG website for more information. .

    ILADS supports a doctors freedom to treat and a patients right to choose the best treatment options available, without bureaucratic interference. A doctors primary duty is to put the patient first. Outside interference restricts a physicians ability to provide optimum care.

    We want to restore real healthcare for our patients and allow doctors to prescribe the best possible treatments without interference from insurance companies and other bureaucracies, said Dr. Steven J. Bock, president of the ILADS Board of Directors.

    The jumbotron is anything but invisible. The giant video screen is 29 feet tall and 56 feet across and is strategically positioned at 1500 Broadway on the corner of 44th Street and 7th Avenue in New York City. The spot will run 5 times per hour for 36 days. It is estimated that 1.6 million people pass through Times Square each day. The spot will remain in place during the December holidays and New Years Eve celebration for bonus exposure.

    This Organization Cannot Be Evaluated Because It Is Not A 501 Irs Registered Nonprofit

    Lyme Disease – A Primer (Dr. Daniel J. Cameron)

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    Q1 Does A Single 200 Mg Dose Of Doxycycline Following A Tick Bite Provide Effective Prophylaxis For Lyme Disease

    Organizational values

    The panel placed a high value on preventing disease, thereby avoiding both the unnecessary progression from a potentially preventable infection to one that is chronic and associated with significant morbidity and costs. The panel placed a high value on not causing the abrogation of the immune response. The panel also placed a high value on the ability of the clinician to exercise clinical judgment. In the view of the panel, guidelines should not constrain the treating clinician from exercising clinical judgment in the absence of strong and compelling evidence to the contrary.

    Recommendation 1a

    Clinicians should not use a single 200 mg dose of doxycycline for Lyme disease prophylaxis .

    Role of patient preferences

    Low: The relative trade-offs between risks and benefits are clear enough that most patients will place a high value on avoiding a seronegative state and its attendant delays in diagnosis and treatment.

    Recommendation 1b

    Clinicians should promptly offer antibiotic prophylaxis for known Ixodes tick bites in which there is evidence of tick feeding, regardless of the degree of tick engorgement or the infection rate in the local tick population. The preferred regimen is 100200 mg of doxycycline, twice daily for 20 days. Other treatment options may be appropriate on an individualized basis .

    Role of patient preferences
    Recommendation 1c
    Role of patient preferences

    Q3 Should Patients With Persistent Manifestations Of Lyme Disease Be Retreated With Antibiotics

    Organizational values

    The panel placed a high value on reducing the morbidity associated with chronic Lyme disease and improving the patients QoL as well as on the need for individualized risk/benefit assessment and informed shared decision-making. The panel also placed a high value on the ability of the clinician to exercise clinical judgment. In the view of the panel, guidelines should not constrain the treating clinician from exercising clinical judgment in the absence of strong compelling evidence to the contrary.

    Recommendation 3a

    Clinicians should discuss antibiotic retreatment with all patients who have persistent manifestations of Lyme disease. These discussions should provide patient-specific riskbenefit assessments for each treatment option and include information regarding C. difficile infection and the preventative effect of probiotics . .

    Role of patient preferences

    Low: The benefits of educating patients about the potential benefits of retreatment and the risks associated with various treatment options, including not treating, clearly outweigh any attendant risks associated with education.

    Recommendation 3b

    Treatment options are extensive and choices must be individualized. Each of these options would benefit from further study followed by a GRADE assessment of the evidence and consideration of associated risks and benefits, but until this information is available, clinicians may act on the currently available evidence.

    Role of patient preferences

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    Executive Summary Of Treatment Recommendations

    With the goal of fostering evidence-based, patient-centered care for patients with Lyme disease, the panel performed a deliberate GRADE assessment of the pertinent trial evidence regarding three fundamental treatment questions and reviewed the risks and benefits of antibiotic therapies used in the treatment of Lyme disease. The panel also considered the ramifications of withholding antibiotic treatments or using non-curative regimens and acknowledged that either may result in a significant disease burden. Following the completion of these activities, the panel drew several conclusions regarding the treatment of Lyme disease.

    Based on these conclusions, the panel formulated treatment recommendations reflecting ILADS values and patient preferences. Recommendations for the individual clinical questions are summarized here. A detailed discussion of each question, including the complete GRADE analysis, the riskbenefit evaluation, ILADS statement of values and the subsequent individual treatment recommendations, in full, follows this summary.

    How To Approach Your Non

    ILADS Lyme disease guidelines rank in top 5% of all ...

    For various reasons, you may choose to consult with a doctor who doesnt specialize in Lyme disease or other tick-borne diseases.

    If so, be sure to be as proactive as possible in providing information that could help in diagnosing your disease, and always feel free to share resources that you find in your own research to prompt discussions about any aspect of your diagnosis or treatment, including more advanced testing options.

    If your doctor does not believe Lyme disease exists, reach out to another doctor for a second opinion.

    Want To Find A Blood Draw Site? Use Our Tool Here.

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    Etiology Of Lyme & Other Ixodes

    lyme disease

    Lyme disease is caused by members of the Borreliaburgdorferi sensu lato complex.

    Co-infections

    Black-legged ticks have been shown to transmit several other pathogens in addition to Borrelia burgdorferi.

    • It is important to consider co-infecting pathogens likeBabesia, Anaplasma, Ehrlichia and Bartonella for patients who have risk factors for those illnesses and/or persistent symptoms after antibiotic treatment for Lyme disease.
    • The frequency of tick-borne co-infections in Lyme disease patients from endemic areas ranges from 4 to 45%. When coinfections are left untreated, their continued presence increases morbidity and may prevent successful treatment of Lyme disease.
    • Laboratory evaluation for co-infecting pathogens can be challenging. Performance parameters of available tests are variable and do not always account for the different strains that may be responsible for illness.

    Some of the most commonly encountered co-infections are:

    Selected Other Tick-related Diseases

    STARI, another important tick-borne diseaseSouthern tick- associated rash illness , a Lyme-like illness, has been associated with bites from the Lonestar tick , not blacklegged ticks. The bacterial pathogen has not been clearly established. Limited evidence supports antibiotic treatment similar to that for Lyme disease. The Lonestar ticks range continues to expand and in addition to its southern and central distribution now includes much of the northeastern US.

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