Our Role & Impact

Position Statements

NatCapLyme focuses our efforts on helping people with tick-borne diseases through awareness, education, support, advocacy, and research. After careful deliberation, we issue formal position or policy statements on issues that are of critical importance to our community and our association’s mission. We invite you to read through our past position statements:


Statement By NatCapLyme To The ISDA Guidelines Review Panel On The 2006 IDSA Guidelines

The National Capital Lyme and Tick-Borne Disease Association (NatCapLyme) would like to thank the Review Panel for reexamining the 2006 Guidelines1, for committing to Attorney General Blumenthal to consider all points of view, and for giving us this opportunity to represent the experience of a large group of patients and impacted individuals who struggle first-hand against the devastating, life-altering effects of tick-borne disease complexes, including chronic Lyme disease.

The National Capital Lyme and Tick-Borne Disease Association strives to improve the quality of life for people suffering from Lyme and tick-borne illnesses by offering support and disseminating information in order to educate and empower patients, families, healthcare workers, and the community at large. We seek to regain our health and find a cure for these terrible diseases. We are inclusive and seek collaboration with all those interested in working toward this goal.

We offer this statement today in the hope that the Review Panel will consider the very real toll of human suffering resulting from chronic Lyme disease and its co-infections and reverse the harm done to patients and to the public as a direct result of the narrow paradigm of Lyme disease that underpins the 2006 IDSA Guidelines and the parochial subset of science that was used by the 2006 Panel to establish the Guidelines.

Lyme Disease is the most common vector-borne infectious disease in the United States.  Ticks transmit the spirochete bacterium Borrelia burdorferi (Bb) that causes Lyme disease.  The Centers for Disease Control and Prevention (CDC) records over 27,000 new Lyme infections each year, but also states that cases meeting its surveillance criteria often go unreported, and new cases could be higher than 270,000 annually.

A study by the Mercer University School of Medicine found that family physicians practicing in the state of Georgia diagnosed Lyme disease at a rate 40 times greater than the surveillance case rate reported to the CDC for the same year.2 We do not know how many new Lyme infections occur annually, but it is likely to be hundreds of thousands; and a great many Americans are infected already.  Estimates of the annual economic impact of Lyme disease range from $56 million3 to more than one billion dollars.4

As an association committed to education and support for people adversely affected by Lyme and tick-borne diseases, we witness first-hand and can attest to the devastating impact on the lives of our members, their families, and too many others like them throughout our region and across the nation. Our statement will do the following:

  • Demonstrate the serious realized threat to public health presented by chronic Lyme disease and associated co-infections
  • Show that the 2006 IDSA Guidelines are fundamentally flawed through a systematic denial of chronic Lyme disease that causes harm to patients
  • Describe the artificial shortage of good medical care resulting from intimidation of physicians who treat chronic Lyme and tick-borne disease
  • Offer our inside view of the Lyme disease epidemic
  • Show that the 2006 Guidelines are arbitrary and capricious
  • Argue against the use of the Guidelines for judging physicians and denying insurance claims
  • Make specific recommendations to remedy the health crisis we find ourselves in due to misdiagnosis and under-treatment of Bb and co-infections
Chronic Lyme Disease and Associated Co-infections are a Serious Realized Threat to Public Health

Lyme disease patients face tremendous suffering and disability.  One study found that chronic Lyme patients experience the quality of life of someone with congestive heart failure or osteoarthritis and suffer more impairment than someone living with type II diabetes or a recent heart attack.5

Researchers at Columbia University in New York City published a study in 2008 that confirmed these findings and added that the fatigue level in chronic Lyme disease patients is equal to that of multiple sclerosis.6  Other studies have described the fatigue as “profound, notable, unusual, debilitating, and extreme, not as a vague symptom of tiredness.”7   Two earlier articles in the Annals of Internal Medicine attributed “long-term impairment of functional status”8 to exposure to Lyme disease, including “more musculoskeletal impairment and a higher prevalence of verbal memory impairment when compared with those without a history of Lyme disease.  Our findings suggest that disseminated Lyme disease may be associated with long-term morbidity.”9   Two more researchers conducted a meta-analysis of papers on the subject in 2005 and concluded that “some patients with LB [Lyme borreliosis] have fatigue, musculoskeletal pain, and neurocognitive difficulties that may last for years despite antibiotic treatment.  The prevalence of symptoms was significantly higher in the LB patients.”7

Studies suggested that Lyme disease can trigger fibromyalgia,10-12 which now afflicts close to two percent of the United States population.13 Science has repeatedly suggested a connection between Lyme infections and deadly neurodegenerative conditions such as multiple sclerosis,14-18 lupus,19 Lou Gehrig’s disease,20-22 Parkinson’s,23-25 recurrent meningitis26-27 and schizophrenia.28-29   The Journal of Alzheimer’s Disease published an article in late 2004 entitled “Borrelia burgdorferi persists in the brain in chronic Lyme neuroborreliosis and may be associated with Alzheimer disease” (AD) which stated that “Borrelia antigens and genes were co-localized with beta-amyloid deposits in these AD cases. The data indicate that Borrelia burgdorferi may persist in the brain and be associated with amyloid plaques in AD.  They suggest that these spirochetes, perhaps in an analogous fashion to Treponema pallidum [the causative agent of syphilis], may contribute to dementia, cortical atrophy and amyloid deposition.”30

Columbia University’s Chronic Lyme Research Center is probing a possible connection between Lyme and some cases of autism (http://www.columbia-lyme.org/flatp/childstud-n.html).  Medical Hypotheses recently published a paper noting the geographic and symptom overlaps between Lyme and autism, among other factors.31 Concerned parents have started the Lyme-Induced Autism Foundation, which sponsors annual conferences on the topic (http://www.liafoundation.org).  Considering that CDC statistics show that boys aged 5-9 are at highest risk for Lyme32 and that autism incidence clusters among young boys, 33 the Lyme-autism connection deserves investigation.

Physicians and healthcare practitioners must become aware that some Lyme patients are misdiagnosed with maladies that Lyme mimics and are denied treatment that could address the underlying cause of their symptoms.  The current IDSA Guidelines directly contribute to misdiagnosis and under-treatment of chronic Lyme disease and related infections by minimizing the seriousness of the disease, and by dismissing infectious processes as complications.

Chronic Lyme disease and co-infections must be included in differential diagnoses of MS, ALS, Alzheimer’s, seizures and other neurological conditions, as well as arthritis, CFS, Gulf War syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder and patients with various difficult-to-diagnose, multi-system syndromes. Current practice, in response to the recommendations of the 2006 Guidelines, is for physicians to rule out Lyme disease based on the Guidelines authors’ narrow views that the disease is easily cured, so if a patient previously had treatment and is negative by today’s faulty tests, it could not be Lyme disease.  The Guidelines recommend this approach despite ample peer-reviewed literature demonstrating the persistence of Bb following antibiotic treatment 34-43 and documented presence of active borreliosis despite seronegativity.44-48 This practice and application of the Guidelines leads to many patients developing serious and deeply entrenched infection by Bb and other pathogens due to misdiagnosis or under-treatment.

Lyme disease and its co-infections not only impact the quality of lives, they sometimes prove fatal, and such cases are documented in the scientific literature.16, 39, 49-53 We also know personally people who have lost family members to Lyme disease.  Despite Guideline assertions to the contrary, the Lyme spirochete also has been shown to cross the placenta during pregnancy and infect the unborn child, resulting in miscarriage, stillbirth, and serious developmental and health complications.54-57

The dangers of infection also extend to blood donation as new animal research raises the possibility of transfusion transmitted Lyme, 58 and the spirochete has been shown to survive blood banking conditions.59, 60 Transmission of tick-borne babesiosis, a frequent co-infection of Lyme, through transfusion, has been documented61-63 and has been called “a major threat to the blood supply.”64   Consequently, Lyme disease and its co-infections present a serious hidden danger to the health and well being of Americans.

IDSA Guidelines are Fundamentally Flawed Through a Systematic Denial of Chronic Lyme

The 2006 IDSA Guidelines are fundamentally flawed through a consistent bias to exclude the weight of a large body of scientific evidence regarding the persistence of Bb, its immunosuppressive characteristics, and its multi-systemic involvement in persistent, disseminated Lyme disease. The 2006 Panel members rely heavily on their own research that postulates Post-Lyme Syndrome to explain inconsistencies in clinical observations, and then systematically ignore the large body of scientific studies and evidence, 65, 66 including their own research from the 1980’s and early 1990’s 5, 9, 10, 12, 19, 21, 22, 26, 27, 35, 43, 44, 49, 51, 52, 54 that contradicts the Panel members’ narrow definition of the disease.  Evidence includes numerous studies that describe the persistence of Bb cited previously, while others address the biology and pathogenesis of the organism Bb, detailing its biology and the various morphologies it uses to survive under adverse conditions, including cysts, blebs and L-forms. 30, 67-73   Others describe mechanisms for immune system suppression and immune system evasion69 and sequestration 37, 41, 42 in inaccessible sites such as deep synovial connective tissue “that may allow spirochetes to elude host immune response and antibiotic treatment.”40

We do not dispute the hierarchy of evidence that the Guidelines purport to be founded on, but rather, we question the validity of the 2006 IDSA Panel members’ use of that hierarchy. Statements exist in the Guidelines themselves, and in IDSA leadership letters to Congress and state legislatures, that diminish the experience of patients and of physicians who treat chronic Lyme disease as reflecting a lack of “commitment to evidence-based medicine”. 74, 75 However, the 2006 IDSA Panel members themselves deny evidence by ignoring their own contradictory studies from two decades ago and by disregarding significant global scientific literature. They conducted more recent research studies that are artificially constrained in terms of study population, entrance and exit criteria, success measures, flawed testing, and study durations that do not comport with real life experience.65 Perhaps most tragically, though, they refuse to seriously consider the staggering accrual of anecdotal evidence.

Anecdotal evidence is important because it breaks our paradigms.  President John Adams said, “Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passion, they cannot alter the state of facts and evidence.”76 When facts present in the form of clinical experience, and do not conform to a current paradigm, that leads to questioning.  The questioning and honest investigating lead to new understandings of the world, or in this case, a disease process.  There is a large and quickly growing body of anecdotal evidence worldwide, including the evidence among our more than 1600 members, that complex chronic illness can have underlying infectious bases that frequently give way to long-term antibiotic treatment.

The record of medical history and the advancement of science are filled with examples of accidental discovery.  Science progresses when a careful observer recognizes those results that do not fit his or her paradigm or expected result.  Accidental discoveries have resulted in the development of penicillin, X-ray, quinine, smallpox vaccination and a plethora of other critical innovations.77-79 Likewise, medical treatment advances through observation, and is validated and codified through controlled experimentation and good study design.

There is an extraordinary mass of clinical observation and patient experience that the 2006 Panel members dismiss as anecdotal evidence, implying it has no value. The Guidelines include modifiers such as “rare,” “small number,” “small proportion,” “less than 10%,” “lack of biologic plausibility,” “lack of efficacy,” “absence of supporting data,” and “no convincing biologic evidence,” wherever they address opposing study results. These modifiers are provided as statement of facts, though they are truly just opinions.  The Connecticut Attorney General found in his investigation that there is evidence of substantial undisclosed conflicts of interest that appear to motivate the otherwise inexplicable behavior of ignoring what is widely experienced by a large patient community and a large body of published scientific literature.

NatCapLyme fully recognizes the importance of controlled scientific studies and agrees that the scientific research into chronic Lyme disease and associated co-infections is inadequate.  The need for more study does not discount, however, the reality of the experience of our members and the many thousands of other chronically ill patients who are not helped, but harmed, by the recommendations of the 2006 IDSA Guidelines.  Controlled studies are needed, but they must be expanded well beyond the artificial confines embodied in the current IDSA Guidelines.  Chronic Lyme disease is real, and outcomes improve markedly using treatment protocols that are at variance with the recommendations by the 2006 IDSA Guidelines.65, 66 Post Lyme Syndrome is an artificial analytical construct, and with it, the IDSA and the 2006 IDSA Guidelines are inflicting injury on a large and vulnerable population in the United States.

Doctors Who Aggressively Treat Lyme Disease Face Professional Intimidation and Persecution

Since the 1980s, more than thirty doctors have faced investigation by their state medical licensing boards for providing Lyme disease treatments not recommended by the IDSA’s treatment guidelines.  Although the IDSA declared physician compliance with its 2006 guidelines to be voluntary,6 state health boards have sanctioned a number of dissenting physicians based on the IDSA’s strict short-term antibiotic treatment protocols.  While medical guidelines typically address minimum standards of care, the IDSA Guidelines for Lyme are restrictive and postulate Post Lyme Syndrome as an alternate construct to dismiss the possibility of persistent infection an provide a basis to restrict treatment. In so doing, the 2006 IDSA Guidelines often hurt the patients whose welfare they purport to protect by insufficiently treating the infection, allowing it to further disseminate and more deeply sequester in the patient’s tissues, 40 often suppressing the immune system69 and invading the central nervous system, where it is far more difficult to treat.80

Many studies demonstrate the genetic complexity and unique mechanisms for persistence of the Lyme bacterium.43, 70-73, 81-86 Others show that Borrelia spirochetes can be cultured from antibiotic-treated patients suffering a relapse of symptoms, 18, 41, 42, 45, 46, 87, 88 leading one team of researchers to publish an article in the Annals of Medicine stating, “We conclude that the treatment of Lyme borreliosis with appropriate antibiotics for even more than 3 months may not always eradicate the spirochete.”50

Physicians and other healthcare professionals who disagree with the IDSA’s restrictive treatment protocols formed the International Lyme and Associated Diseases Society (ILADS) and in 2004 published their own evidence-based clinical practice guidelines, accessible on the National Guideline Clearinghouse.66 Nevertheless, state medical boards persist in seizing patient files and prosecuting doctors who align themselves with ILADS or treatment philosophies similar to that of ILADS, even though both ILADS and the IDSA offer legitimate standards of care and patients should have a right to choose between them.89 This pattern of intimidation and professional harassment causes doctors to fear the loss of their medical licenses and livelihoods.  As a result, few physicians across the country openly treat Lyme and other tick-borne infections in a manner at variance with the IDSA.

The Toll of Human Suffering

The experience that NatCapLyme brings for your consideration is the inside view of a ballooning epidemic which the medical community is failing to address on multiple fronts, but especially in diagnosis, treatment, insurance coverage, and availability of care for Lyme disease.  The help of the Review Panel is desperately needed.

Diagnosis in Lyme disease has too many pitfalls.  People come to NatCapLyme routinely who have seen a doctor for a tick bite and rash and have been told it is not an EM because it has no bull’s-eye, or it doesn’t seem typical in some way.  When the patients later become ill and test positive for Lyme, they have already been denied their best window of time for easy treatment.  Physicians often send people with a tick bite home to await testing six weeks later, and by the time they test positive, the Bb has already become disseminated, perhaps even into their central nervous system. 24, 30, 45, 66 Above all, doctors fail to consider that a patient can test negative and still have Lyme disease, or that they may become seropositive after antibiotic treatment is started.

Failure to diagnose Lyme disease in the acute phase and inadequate treatment upon diagnosis form the basis for unthinkable human suffering among those we serve.  We have a rapidly growing number of young people, for example, who had Lyme exposure in childhood; and because their symptoms were atypical or too vague, or their treatment too brief, they progressed to a severely debilitated state including Lyme encephalopathy, severe pain, and multiple system involvement.  These and others with chronic Lyme disease form an increasingly large pool of students in our area who receive homebound instruction and home schooling or who medically withdraw from college. They are isolated from their peers, stigmatized by school officials, and then denied insurance coverage when they become adults. How many children who are being bitten by ticks today will become severely disabled in their prime of life because of physician ignorance?

We witness the rewards many of our participants find in longer-term antibiotic therapy, and especially appropriate combined treatment that targets all contributing pathogens and forms of Bb.  People often regain their health and then work to avoid relapse, but they face insurance denials of their treatment.  Whole families in our region suffer from Lyme disease, and often one or more parents lose their jobs when they become unable to pay for the treatment needed to recover and maintain their functional health.  Mothers are forced to quit jobs to home school sick children.  Families lose their homes, and many have to rely on government assistance.

As a result of the physician intimidation previously noted, adequate care for patients needing treatment not sanctioned by the 2006 IDSA Guidelines is in low supply.  Some dedicated practitioners are trying to fill the void as people who are in terrible pain and disability turn to them, but the supply is meager. Some patients most in need of expert care turn to unconventional or dangerous means to find relief from their suffering.  Some fall victim to costly quick fix vendors, while others languish without hope or help. We entreat the IDSA Review Panel to step up to the challenge or at least allow for an alternate standard of care and free physicians to follow the dictates of their professional judgment.

The 2006 Guidelines are Arbitrary and Capricious and Cannot be Sustained

In the opinion of our organization, the IDSA Review Panel has an obligation to uphold a responsible standard because of the serious ramifications of its activities. The principles governing activities of the Panel are analogous to those of administrative agencies chartered by federal legislation that are subject to the Administrative Procedures Act.  The standard of review for administrative actions of such agencies is whether the action was “arbitrary and capricious.”  While the IDSA is not a federal agency, its restrictive treatment guidelines have such profound consequences that it should be subject to the same reasonable standard.  The scope of review under the “arbitrary and capricious” standard is narrow, but the promulgator of the guidelines is nonetheless required to examine the relevant data and articulate a satisfactory explanation for its action, including a “rational connection between the facts found and the choice made.” Burlington Truck Lines v. United States, 371 U.S. 156, 168, 83 S.Ct. 239, 245-246, 9 L.Ed.2d 207 (1962).

We submit the panel that adopted the guidelines now under review failed to meet the standard set by the Administrative Procedures Act.  As is true of an administrative agency, the IDSA may not omit consideration of an important aspect of the problem without providing a rational explanation. It must cogently articulate why it failed to consider relevant data such as the repeated experience of practicing physicians who encounter the chronic form of Lyme disease and the conspicuous evidence that extended treatment with antibiotics relieves symptoms and helps patients to get well. The evidence cannot be simply ignored, but must be evaluated, and an explanation must be offered that provides a rational connection between the facts and the choice made to discount that evidence.

The 2006 Panel’s unwavering reliance on just a subset of evidence, in conjunction with its refusal to evaluate or consider the totality of evidence available to it, including early studies authored by its members, leads to inaccurate results and can be viewed only as arbitrary and capricious. The United States Court of Appeals for the Eigth Circuit has held that action may be arbitrary and capricious where an agency takes “willful and unreasoning action, without consideration and in disregard of the facts or circumstances of the case.”  Plaza Bank of West Port v. Board of Governors, 575 F.2d 1248 (8th Cir. 1978).  When challenged as arbitrary and capricious, an agency must demonstrate that its guidelines were a product of “reasoned decision making.”  U.S. v. Garner, 767 F.2d 104  The 2006 Panel, by disregarding a plentiful body of evidence, has plainly acted without consideration and in disregard of the facts and circumstances surrounding its 2006 IDSA Guidelines.  Thus, the 2006 IDSA Guidelines are a product of arbitrariness and capriciousness rather than reasoned decision-making.

In addition, by failing to consider anecdotal evidence, the 2006 Panel was arbitrary. Action is subject to challenge as arbitrary and capricious where an agency does not give “minimal consideration to relevant facts contained in the record.”  Louisiana v. Verity, 858 F.2d 322 (5th Cir. 1988).  The 2006 Panel cannot have given “minimal consideration” to the relevant facts because it failed even to consider the broad array of factually relevant anecdotal evidence that should have been used to inform the 2006 Panel’s decision-making process.  The Supreme Court of the United States has held that an agency is charged with the duty of “examining the relevant data and articulating a satisfactory explanation for its action, including a ‘rational connection between the facts found and the choice made.’”  U.S. v. Garner, 767 F.2d 104 (5th Cir. 1985) (Citing Motor Vehicle Manufacturers Ass’n v. State Farm Mutual Automobile Insurance Co., 463 U.S. 29, 43 (1983).  Unfortunately, the 2006 Panel failed to examine the relevant data and therefore failed to demonstrate a rational connection between all the relevant data (including anecdotal evidence and other evidence noted above) and its final, published guidelines.

The Supreme Court of the United States has further held that a decision is arbitrary and capricious where an entity “entirely failed to consider an important aspect of the problem,” or “offered an explanation that runs counter to the evidence before the agency.” Motor Vehicle Manufacturers Ass’n, supra, 463 U.S. at 43.  In Motor Vehicle Manufacturers Ass’n, the Supreme Court held that an agency’s failure to consider alternatives to its proposed rule rendered its treatment of rules and guidelines arbitrary and capricious.  463 U.S. at 46.  By failing to give full consideration of reasonable evidence and alternative treatment methods, the 2006 Panel promulgation of the 2006 IDSA Guidelines was arbitrary and capricious.
Moreover, the evidence used by the 2006 Panel was seriously flawed.  Of the many studies underway that may challenge the assumptions and conclusions of the 2006 Panel, one in particular shows that there is not just one, but there are several strains of Bb, and each may react very differently to antibiotic therapy; some allowing for nearly immediate cure and some resisting treatment for extended periods. 90 The studies relied upon by the 2006 Panel treat all strains the same.  Recently, Pamela Weintraub, author of Cure Unknown Inside the Lyme Epidemic, stated on the radio program The Diane Rehm Show91 that the 2006 Guidelines represent 20th century science in a 21st century world.  The truth is that we do not know enough to justify such rigid and definitive treatment guidelines as those under review by this Panel. New and important studies are underway right now that may prove vital to the treatment of Lyme disease.   New evidence is coming, and whether or not it is sufficient to support new therapeutic recommendations, it is sufficient to support an equivocation of the promulgated 2006 Guidelines and to allow the recognition that it may not represent the sole standard of care and therefore warrants an express statement of doubt that physicians who fail to treat in accordance with the 2006 Guidelines are worthy of censure by state licensing boards.  Indeed, this Panel should state its strong disapproval of boards that take such disciplinary action.

As we have shown, the Guidelines are serving the purposes, intended or unintended, of denying treatment to suffering patients, denying insurance coverage for obviously beneficial longer term treatment, and subjecting well meaning and capable physicians to attack and to the threat of loss of their licenses. These results are, we submit, a perversion of the purpose of medical guidelines.

The 2006 Guidelines are Imperfect as a Standard for Judging Physicians or Denying Insurance Claims  

NatCapLyme also submits that the 2006 Guidelines are imperfect as a standard for purposes of medical board review and insurance determinations.  Two years ago, a study was published examining the role of medical guidelines in determining the legal standard of care and the perceptions of practicing lawyers on the use of guidelines in medical negligence litigation in England and Wales. 92 The researchers found some interesting results that are disturbingly at odds with the experience of Lyme treating physicians and their patients.  In examining the US experience, they conclude that guidelines are not treated as dispositive for purposes of liability litigation, but typically are considered as one piece of evidence among others that bear on liability determination.

The authors argue that guidelines “are at best summaries of the most common clinical management pathways and cannot be used to supplant clinical judgment where special action is merited.” 93 They found several serious inherent limitations and dangers in medical guidelines, many of which have occurred with respect to the 2006 IDSA Guidelines. For example:

1.    There is a danger in applying the generalized prescription of guidelines in a rigid fashion to every patient. This interference with clinical freedom can result in “cookbook medicine . . . In medical practice, many situations arise where the art of identifying patient problems and the application of clinical acumen to individual patient’s needs remain removed from the science and technological advances of the discipline.  Evidence-based medicine cannot fully capture the art of medical practice, and there remains a need for clinical judgment and discretion.” 94 The validity of guidelines may be undermined by weak research data as well as confounding factors and biases emanating from misconceptions, personal experiences and beliefs of the developers. 95
2.    Guidelines or evidence-based approaches to medicine may serve as a mechanism for rationing healthcare, 96 and decisions reflected in some guidance might be motivated predominantly by economic considerations.
3.    Guidelines may be proven wrong over time.
4.    There is a serious fear that the use of guidelines (particularly in the legal context) might lead to the ossification of medical practice by stifling the art of medicine in preference to using scientific evidence by rote. 97

The study clearly demonstrates that the 2006 Guidelines are an inappropriate standard to judge the quality of clinical practice by physicians or support denial of insurance claims.

Specific Recommendations to Remedy the Complex Situation Created by the Flawed IDSA Guidelines
  • Withdraw the 2006 IDSA Guidelines, acknowledging that the current state of the science is inadequate to support the prescriptive and restrictive diagnosis and treatment recommendations embodied in them.
  • Include late stage Lyme in differential diagnosis for a broad range of chronic illnesses including MS, ALS, Alzheimer’s, seizure disorders and other neurological conditions, as well as arthritis, fibromyalgia, CFS, Gulf War syndrome, ADHD, hypochondriasis, somatization disorder and other diagnostically difficult, multi-system syndromes.
  • Clearly delineate the severe limitations of current testing65, 66 and provide clear guidance to physicians on the necessity of a clinical diagnosis in Lyme disease, so falsely negative patients do not go untreated.
  • Emphasize lesser known presentations in Lyme disease66 such as no erythema migrans (EM) rash, EM rashes with no bulls-eye, multiple rashes, and symptoms such as cardiac, digestive, ocular, cognitive, neurological, and psychiatric idiopathies.98, 99
  • Acknowledge the legitimacy of more than one standard of care in Lyme disease, since the available science has not yet answered all of the questions, and thereby support the imperative for physicians to use their best clinical judgment in the practice of medicine without fear of reprisal.
  • Support the rights of patients to make informed decisions among the varying standards of care for Lyme disease.
  • Agree that there is insufficient evidence to deny long-term antibiotic therapy for chronic Lyme disease, 100 so that doctors can choose treatment alternatives, and insurance companies can appropriately cover claims.

NatCapLyme thanks the Review Panel for its hard work, and for its effort to consider the whole body of scientific literature on Lyme disease in an impartial manner.  Thank you for allowing us to offer you the experience, thoughts, concerns, and needs of our membership.  Our hope is that the work of the Panel will result in better care for patients and a lower incidence of late stage Lyme disease due to better diagnosis and treatment, and that the damage done by the 2006 Guidelines to the nation’s health will somehow be reversed.

Contact Information:

The National Capital Lyme and Tick-Borne Disease Association
P.O. Box 8211
McLean, VA 22106-8211
Phone: (703) 821-8833
E-mail us: natcaplyme@natcaplyme.org
Les Meyer (703) 220-1722
Kathy Meyer (703) 281-5221
Gregg Skall, Esq. (202) 857-4441

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