Lyme Patients and Advocates Call on Congress

January 26 – 27, 2016

Grievances, Requested Actions, Justifications and References

Lyme patients and patient advocates from across the United States call on Congress to take decisive action to combat the growing epidemic of Lyme disease—what many people believe to be the greatest threat to public health since the AIDS epidemic.

It’s been 40 years since Lyme disease was identified, yet Federal agencies and medical societies that determine the standard of care for Lyme disease have failed to protect the public from this epidemic. According to the Centers for Disease Control and Prevention (CDC), there are more than 300,000 new cases annually—six times more than HIV/AIDS—and likely many more due to underreporting and misdiagnosis.

Unreliable tests, treatment regimens that fail up to 36 percent of the time, insufficient Federal funding for research, inadequate programs for prevention, and CDC’s endorsement of outdated treatment guidelines have created a perfect storm of unmet medical need and patient suffering.

Hundreds of thousands of Lyme patients experience a greatly diminished quality of life; a tragedy compounded by financial hardships from out-of-pocket costs and lost income. The burden on individuals as well as on our economy is enormous, the suffering is widespread, and much of this is preventable.

Examples of the impact on patients include:

• The mother who cannot work or manage a household because profound fatigue, muscle and joint pain, and weakness prevent her from even lifting a carton of milk without difficulty.

• The 12-year-old who cannot attend school or participate in the joys of childhood because confusion, fatigue, and sensitivity to sound and light make attending school or participating in activities impossible.

• A 43-year-old father who cannot work because he experiences vertigo, balance problems, confusion, difficulties thinking, and weakness in his legs and arms.

These are not exceptions: Hundreds of thousands of patients battling Lyme disease face similar challenges.

We call on Congress to take decisive action to combat this epidemic, which has been ignored, dismissed, and mishandled by CDC with devastating results. In addition to enacting strong legislative remedies, we call upon Congress to investigate the failure of CDC to protect the public health, and the influence of conflicts of interest in shaping federal policy on Lyme disease. The costs of ignoring these underlying issues are continued unnecessary suffering and an escalating economic burden to our society.

Our Grievances with CDC

The Centers for Disease Control and Prevention is responsible for promoting “health and quality of life by preventing and controlling disease, injury, and disability.”

Preferential Treatment

The CDC worked closely (and sometimes secretly) with the Infectious Diseases Society of America (IDSA) to develop guidelines for the diagnosis and treatment of Lyme disease. IDSA is a politically active 501-C6 tax-exempt organization and can receive unlimited contributions from individuals, corporations, and unions. It is unclear why this private group is allowed to determine Federal health care policy.

The IDSA guidelines are contested by large numbers of physicians, scientists, patient advocates, and lawmakers who maintain that the IDSA guidelines misrepresent science and restrict access to care for patients with chronic illness.

CDC provides preferential treatment to IDSA by promoting IDSA’s 2006 guidelines for diagnosis and treatment of Lyme disease while withholding information from the public about the more current and more comprehensive 2014 Lyme guidelines from the International Lyme and Associated Diseases Society (ILADS).

Both sets of guidelines are listed by the National Guidelines Clearinghouse. However, unlike the ILADS guidelines, the IDSA guidelines do not comply with the Institute of Medicine (IOM) Standards for Developing Trustworthy Clinical Practice Guidelines or with the Grading of Recommendations Assessment, Development and Evaluation Working Group (GRADE) system for rating the quality of evidence.

For other infectious diseases, the CDC does not endorse guidelines provided by a private, non-government group—not for HIV, not for malaria, not for Ebola. No other private group’s guidelines are given preference in CDC publications and on CDC’s website except the IDSA guidelines for Lyme disease.

CDC’s preferential treatment of IDSA violates the Standards of Ethical Conduct for Employees of the Executive Branch, which states: “Employees shall act impartially and not give preferential treatment to any private organization or individual.”

On June 11, 2013, CDC’s Division of Vector-Borne Diseases hosted a meeting in Fort Collins, Colorado with Lyme support group leaders to discuss the concerns and priorities of Lyme patients and patient advocacy groups. Encouraged by CDC’s outreach, the group leaders presented a list of priorities they wanted CDC to address. The number one issue was “Treatment Information and Guidelines.” Support group leaders specifically wanted CDC to end its preferential treatment of the IDSA guidelines and provide equivalent exposure for the ILADS guidelines.

On November 13, 2015, a support group leader who had attended the June 11 meeting sent an email to the Chief of CDC’s Bacterial Diseases Branch. That email again requested that CDC end its preferential treatment of the IDSA Lyme guidelines and list the ILADS guidelines whenever or wherever the IDSA guidelines are mentioned.

On December 2, 2015, the support group leader received a response from the Director of CDC’s Division of Vector-Borne Diseases and the Chief of CDC’s Bacterial Diseases Branch. The response confirmed CDC’s preferential treatment of the IDSA guidelines, with the implication that the favoritism would continue.

Independent of the support group leader’s correspondence, on October 14, 2015, the Patient Centered Care Advocacy Group filed a citizen petition, End Preferential Treatment of the IDSA Guidelines for Lyme Disease, with the CDC Bacterial Diseases Branch.

On November 30, 2015 a response was received from the Director of CDC’s National Center for Emerging and Zoonotic Infectious Diseases (NCEZID). The response included a statement that “CDC believes that IDSA guidelines currently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease.”

How can the 2006 IDSA guidelines, which are ten years out of date and non-compliant with current Federal standards represent the best available synthesis of the medical literature? It is wholly unacceptable that, when presented with evidence of improprieties, a federal government agency’s official response is to confirm the improprieties and indicate they will continue.

Conflicts of Interest

CDC officials who are providing the preferential treatment are also members of IDSA, the organization receiving the preferential treatment—a glaring and long-standing conflict of interest.

Members of the IDSA guidelines panel are also awarded a disproportionate share of CDC and National Institutes of Health (NIH) research grants for Lyme disease. Two institutions, Yale University and New York Medical College, have received over $52 million over the past 17 years, with few tangible benefits to patients.

From 1998 to 2015, CDC/NIH awarded a total of $510 million in grants. Some of this funding went to scientists with impeccable credentials working at other institutions. Yet their groundbreaking work, including discoveries related to persistent infection which could lead to benefits for patients, has been ignored by CDC and IDSA.

In addition, members of the IDSA Guidelines Review Panel profit through their conflicts of interest. These conflicts include patents on Lyme test kits, accepting payments from vaccine manufacturers, and consulting for health insurance companies that rely on the IDSA guidelines to restrict coverage for long-term treatment.

In 2008, Connecticut Attorney General Richard Blumenthal, now a U.S. senator (D-Connecticut), conducted an antitrust investigation of IDSA based on allegations of abuses of monopoly power and exclusionary conduct. In a May 2008 press release, Blumenthal said, “The IDSA’s 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests—in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies—to exclude divergent medical evidence and opinion.”

According to CDC emails obtained via a Freedom of Information Act (FOIA) request by science writer Kris Newby for the award winning documentary Under Our Skin, CDC and NIH employees attended a series of secret advisory meetings with IDSA members. During a May 2005 meeting at New York Medical College in Valhalla, New York, a ‘‘work plan’’ was established that included a mixture of private interest and public policy issues. Agenda items included updating the IDSA 2000 guidelines for Lyme and conducting a critical appraisal of the competing 2004 guidelines from ILADS.

These meetings violate The Federal Advisory Committee Act (FACA), public law 92-463, which says “Each advisory committee meeting shall be open to the public,” and “records, transcripts, minutes, appendixes, working paper, drafts, studies, agenda, or other documents shall be available for public inspection.”

Other than documents obtained via the FOIA, no records have been made available for public inspection. The FOIA request period ended in 2007.

CDC’s Division of Vector-Borne Diseases, which oversees Lyme disease policy in this country, cannot be allowed to operate above the law to the benefit of a private medical society at the expense of Lyme disease patients.

Performance Failures

In testimony before the Connecticut Department of Public Health and the Connecticut Attorney General’s Office in 2004, Dr. Paul Mead, chief of epidemiology and surveillance for CDC’s Lyme disease program, outlined a strategy to address the rapidly growing epidemic of Lyme disease. Dr. Mead’s testimony included plans to improve awareness, prevention, diagnostics, and treatment.

By all accounts, CDC has failed in these four key areas. These failures are compounded by CDC’s endorsement of the outdated IDSA guidelines.

Lyme disease continues to spread rapidly, with a 320 percent increase in the number of high risk counties from 1992 to 2012. The number of new Lyme cases annually acknowledged by CDC has increased dramatically from just 10,000 in 1995 to more than 300,000 in 2013, when CDC updated its figures to reflect new studies.

According to a review of eight studies from 1992 to 2008, the two-tier test endorsed by CDC and IDSA misses more than half of Lyme cases, even in the late stages of the disease. According to new research by the Johns Hopkins Bloomberg School of Public Health, treatment regimens endorsed by CDC and IDSA leave up to 36 percent of patients with persistent symptoms,

Despite abundant evidence that Lyme disease can persist despite short-term antibiotic treatment, CDC clings to the IDSA position that Lyme is difficult to catch and easy to treat with 2 to 4 weeks of antibiotics.

Key Issues

The following issues must be acknowledged and addressed to provide relief to patients suffering from chronic illness due to Lyme and related tick-borne diseases.

Poor Health Outcomes: A study by published in the March 2014 issue of PeerJ, an open-access medical journal, found that Lyme patients reported a poorer quality of life than patients with other chronic diseases, including congestive heart failure, diabetes, multiple sclerosis, and arthritis. Fair or poor health was reported by 73 percent of patients with chronic Lyme disease compared to 16 percent of the general population.

Lorraine Johnson, CEO of says, “I don’t have to tell patients that they are suffering. The fact is that they are forced to see too many physicians before they are finally diagnosed. By the time they get diagnosed, they are profoundly ill and their illness is much more difficult to treat.”  

She adds, “Beyond the personal suffering, the financial burden this imposes on individuals, their families, and, ultimately, society is enormous. One thing that is certain is that ignoring this problem is costly and grows more costly every day that we fail to intervene.”

Due to CDC’s policies, patients are frequently misdiagnosed, insufficiently treated, or not diagnosed at all, causing acute illness to advance to more serious forms.

Economic Costs: Undiagnosed and untreated Lyme disease patients represent an enormous social and economic burden with lifelong costs for unemployment, Medicaid, Medicare, disability, and welfare for people who can no longer work or manage everyday activities.

Economic Impact of Lyme Disease, published in April 2006 in Emerging Infectious Diseases is a study that shows the direct and indirect costs of Lyme disease average $8,172 per patient, or $10,769 when adjusted for inflation. With more than 300,000 new cases per year as of 2014, this works out to an economic burden of more than $3.2 billion annually.

When misdiagnosis and underreporting are factored in, the economic burden of this epidemic is likely to be much greater as undiagnosed and untreated Lyme disease patients advance to the costly specialties of neurology, rheumatology, orthopedics, and cardiology.

Federal Funding: FY2016 NIH funding for Lyme is $23 million—barely one percent of the $2 billion of NIH funding for emerging infectious diseases, despite the number of new cases of Lyme annually being many times greater than any other disease in that category.

While Lyme disease affects over 300,000 people annually, West Nile virus, with only 1,996 annual cases, receives $48 million in funding. This works out to about $24,000 for each new case of West Nile, compared to just $76 for each new case of Lyme.

We want Congress to provide funding commensurate with the severity and magnitude of the growing Lyme epidemic. Increased funding and assurance that a preponderance of grant awards will be based on tangible benefits to patients is the surest way reduce the burden of illness on patients and the growing costs to our economy.

Two Standards of Care: Controversy over Lyme disease has resulted in two competing standards of care that disagree on most aspects of the disease.

CDC and IDSA promote the view that Lyme disease is easy to diagnose and simple to treat with a limited course of antibiotics. According to the IDSA guidelines, chronic Lyme does not exist, and long-term antibiotic treatment is not warranted.

In contrast, ILADS holds the position that Lyme disease is a serious national medical problem of epidemic proportion that needs to be researched, diagnosed, and treated more aggressively and often requires long-term treatment beyond the limits set by IDSA.

CDC and IDSA cite NIH-funded, double-blind, randomized, placebo-controlled trials in claiming, “There is substantial risk, with little or no benefit, associated with additional antibiotic treatment for patients who have long-standing subjective symptoms.”

However, a rigorous biostatistical review of the NIH trials, published in November 2012 in Contemporary Clinical Trials, determined that “long term treatment can be beneficial” and explains that “significant findings and errors may arise when disagreement and uncertainty exists in the medical community, as is the case with Lyme disease.”

It is also likely that the method of antibiotic treatment can play a role in successful treatment. For example, using pulse dosing to eliminate persister cells needs further inquiry. Equally likely is that new drug combinations need to be investigated, just as tuberculosis requires a mixture of drugs, rather than monotherapy, when it has become an entrenched infection. All of these possibilities, if proven effective, would cut costs for insurers and patients alike because the bacteria would be eradicated and patients would return to good health.

While standard antibiotics help some patients with persistent symptoms, they don’t work for many people. Patients need individualized treatment that takes into account complications, such as co-infections and auto-immune issues, and the fact that patients who do not receive timely diagnosis and treatment require a much more aggressive and comprehensive approach than patients who are treated in the early stages of the disease.

Effective treatment is what we want, whether in the form of different antibiotic combinations, adjustments to the dosing schedule, or something else. Yet little or no CDC/NIH funding has been provided to researchers to pursue these alternatives. It is simply unacceptable that the treatment endorsed by CDC and IDSA fails up to 36 percent of the time.

Persistent Infection: At the center of the controversy surrounding Lyme disease is the existence of chronic Lyme, also referred to as “persistent infection,” which means that some Lyme bacteria can tolerate and survive antibiotic treatment.

One of the earliest cases of chronic Lyme was confirmed by a CDC laboratory that cultured Lyme bacteria from cerebrospinal fluid obtained from patient Vicki Logan, who had undergone intensive antibiotic treatment and ultimately died from the disease after treatment was suspended.

Just as the merchants of doubt within the tobacco industry created a debate where there was none and for 50 years denied the connection between tobacco use and lung cancer, the IDSA guidelines emphatically state that there “is no credible evidence” for the existence of chronic Lyme.

Yet there are hundreds of peer-reviewed studies that provide strong evidence that chronic Lyme is a very real and widespread problem. Good science produced by prestigious academic institutions is ignored by CDC officials and IDSA guidelines panelists.

The CDC concept of Lyme disease fails to take into account peer-reviewed literature on the microbiology and immunology of the Lyme bacterial infection. Lyme disease is not a planktonic infection like strep. It is an immune evasive, persistent infection like tuberculosis, capable of reactivating. CDC explanations of Lyme disease dismiss these peer-reviewed findings.

The existence of chronic Lyme is accepted by microbiologists, pathologists, and independent doctors who treat patients with persistent symptoms. The existence of chronic Lyme is mainly disputed by CDC and academic researchers who have extensive conflicts of interests tied to CDC’s narrow definition of Lyme disease and the IDSA guidelines.

Unreliable Tests:  A key challenge in the diagnosis and treatment of Lyme disease stems from the lack of sensitive and reliable markers of the disease. Based on currently available tests, it is difficult to determine who has the disease, the effectiveness of treatment, and the end point of treatment.

The two-tier test, endorsed by CDC, misses almost half the cases of Lyme, even in the late stages of the disease. These patients remain undiagnosed and untreated. Untreated Lyme disease can cause neurological and cardiac damage and, occasionally, death.

A 2010 report by Dr. John Aucott of Johns Hopkins found that the CDC-endorsed test missed 50 percent of Lyme cases in men and 68 percent in women. Aucott’s study was based on objective information from patients who were confirmed to have Lyme by the current CDC criteria.

CDC and IDSA claim this test is only inaccurate during the first two weeks of infection and that it is very accurate later in the disease. Research shows otherwise: In eight studies from 1993 to 2008, in patients with late-stage Lyme disease, sensitivity averaged just 47 percent.

Even though more reliable tests are available, CDC continues to endorse the obsolete two-tier test. Some of the newer tests can detect persistent infection, which will help settle the debate about chronic Lyme.

Underreporting: In 2013, CDC announced that rather than 30,000 new Lyme cases annually, the  number of new cases annually likely was more than 300,000. When cases from other species of Borrelia and strains not detected by the two-tier test are included, the number could be many times higher.

Another factor in underreporting is CDC’s refusal to acknowledge the true prevalence of Lyme disease in the Southeast and other “non-endemic” regions, despite growing evidence that Lyme disease is common in many of these areas. (Lyme disease has been reported in all states except Hawaii.)

CDC discourages testing and acceptance of positive results in areas it considers non-endemic, despite the lack of data or data collection effort. This causes Lyme patients in non-endemic areas to face even greater obstacles to diagnosis and treatment.

A study published in the December 2015 issue of Clinical Microbiology and Infection provided culture confirmation of Lyme disease in 24 patients in the South. Three individuals were from North Carolina, 11 were from Georgia, and 10 were from Florida. All 24 had undergone previous antibiotic treatment.

The researchers successfully cultivated Borrelia burgdorferi and Borrelia bissettii-like spirochetes from these individuals. This is the “first recovery of live Borrelia burgdorferi sensu stricto from residents of the southeastern United States.”

Stealth Pathogens and Co-infections: Lyme disease, along with other newly recognized pathogens such as Bartonella, Babesia, and Mycoplasma, are considered “stealth infections.” They are difficult to test for and have ways of suppressing the immune system and evading antibiotic treatment. Co-infections work synergistically with Lyme and greatly complicate diagnosis and treatment.

Stealth infections and co-infections represent a new paradigm that the medical establishment is ill-prepared to address. This is another area where more research is needed.

Insurance Coverage: Due to restrictions imposed by the IDSA guidelines, most insurers refuse to pay for long-term treatment. This creates an enormous financial burden because patients must pay out-of-pocket for necessary treatment. Even patients with positive blood tests and the tell-tale rash are frequently denied coverage. With the help of IDSA reviewers, insurance denials often include the message, “There is no evidence that this patient ever had Lyme disease” regardless of medical evidence.

Because of the insurance quagmire, patients are unable to easily find doctors who will diagnose or treat Lyme disease, particularly when the bacterium has become entrenched. As a result, they are forced to seek help outside of traditional medical channels.

Without medical help, patients are left to wander endlessly from one specialist to another or fend for themselves outside of insurance networks just as HIV/AIDS patients did during the early years of the HIV/AIDS crisis. To add to the burden of illness, Lyme disease patients are also saddled with financial hardship.

The consequences—both physical and psychological —are outlined in the 2015 Johns Hopkins study, “Living in Limbo: Contested Narratives of Patients with Chronic Symptoms Following Lyme Disease.” The study describes the consequences of medical neglect, as well as long-term patient bitterness when there is an inability to locate care and treatment when desperately ill. All of these consequences can be traced to the IDSA/CDC guidelines that lock patients out of the medical system and out of insurance coverage.

Doctors Under Attack: When treatment goes beyond the IDSA guidelines, doctors risk becoming the focus of medical board investigations. Good doctors who provide patients with evidence-based treatments are targeted, while doctors who follow the IDSA guidelines and deny treatment to patients who are later proven to have Lyme face little or no repercussions.

Because of these attacks many doctors refuse to provide long-term treatment to patients with persistent symptoms. This creates a critical shortage and forces many patients to travel out-of-state to receive treatment. Patients who cannot afford the travel either remain sick or are forced to seek out alternative treatments.

Misinformation and Propaganda: Advocates complain that CDC personnel and IDSA guidelines panelists have been engaged in a long-running misinformation campaign to promote the IDSA guidelines and discredit research that contradicts IDSA position on chronic Lyme.

The Ad Hoc International Lyme Disease Group was formed in 2005 by CDC and NIH employees and 14 authors of the IDSA guidelines. CDC emails released in 2012 in response to a FOIA request show how the Ad Hoc Group has been covertly setting government policy on Lyme for the past decade.

According to information compiled in the 2008 antitrust investigation of the IDSA guidelines, Ad Hoc group members sit on the editorial boards of more than a dozen major medical journals, including The New England Journal of Medicine and Lancet Infectious Diseases, where they use their position and influence to prevent publication of studies that challenge their views on chronic Lyme.

The American Lyme Disease Foundation (ALDF) is a nonprofit group that masquerades as a patient advocacy organization to promote the interests of IDSA and discredit science that confirms persistent infection. Most of the ALDF directors are members of IDSA. ALDF Executive Director Phil Baker was responsible for management of two of the NIH trials on Lyme disease. In his previous tenure at NIH, Baker, in an email, called chronic Lyme patients “Lyme loonies.” In 2005, he worked behind the scenes to defeat Federal legislation that would have provided more Lyme research funding and established a Lyme disease task force.

In a New York Review of Books article, “Drug Companies & Doctors: A Story of Corruption,” former editor of The New England Journal of Medicine Dr. Marcia Angell writes, “It is simply no longer possible to believe much of the clinical research that is published or to rely on the judgment of trusted physicians or authoritative medical guidelines.”

Patients Vilified: In a series of public statements and in articles published in influential medical journals, Ad Hoc Group members have attacked patients and patient advocacy groups.

The 2011 article, “Antiscience and Ethical Concerns Associated with Advocacy of Lyme Disease,” published in Lancet Infectious Diseases, was co-authored by members of the Ad Hoc Group. The article vilifies Lyme patient advocates and accuses them of being part of an “antiscience movement.” The article claims there is “no microbiological evidence for persistence of B. burgdorferi,” and that “Lyme disease activists have created a parallel universe of pseudoscientific practitioners, research, publications, and meetings.”

Rather than address the problem, the recurring theme from IDSA-aligned researchers is that Lyme patients and advocacy groups are the problem. Many of these very sick patients are forced to educate themselves about relevant science and newer, evidence-based treatment options. Something is wrong when large numbers of chronically ill patients struggling with a burden of sickness must conduct their own research and fund scientific discovery because widely followed medical guidelines do not provide an acceptable standard of care.

The Vaccine Agenda: Conflicts of interest related to development of a Lyme vaccine are the root cause of many of the problems faced by Lyme patients. The CDC’s narrow definition of Lyme disease is designed to support vaccine development. If the definition is expanded to cover all strains of Lyme and all species of Borrelia that cause disease, the patents owned by IDSA panelists would become worthless.

The panel that defined Lyme disease at the 1994 conference in Dearborn, Michigan chose to exclude two Lyme-specific “bands” related to the LYMErix vaccine, which was withdrawn from the market after a flood of lawsuits claiming the vaccine caused arthritis and other illnesses. The exclusion of these bands, combined with the CDC’s high threshold for a positive result, ensures that Lyme disease remains underreported and that the sickest patients remain sick.

The report, Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines, by the Lyme Disease Association suggests that a handful of influential researchers with serious conflicts of interest—including patents related to Lyme disease tests and vaccines, and consulting arrangements with insurance companies—are allowed to dictate a standard of care that supports their interests.

Requested Actions

As concerned citizens and your constituents, we respectfully make the following urgent requests of Congress:

1.     Investigate how conflicts of interest and preferential treatment have shaped Federal policy on Lyme disease, and take action to end the conflicts of interest outlined in this document.

2.     Ensure that CDC’s Division of Vector-Borne Disease receives proper oversight and provides treatment guidelines based on science, not on the vested interests of the IDSA.

3.     Determine why more than $52 million has gone to IDSA members who insist that Lyme disease is “hard to catch and easy to cure.” (What are IDSA members doing with the grant money if this plague is so rare and minor? What benefit has there been for patients?)

4.     In addition to the relief provided by S.1503, the Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2015, which is under consideration by the U.S. Senate, enact stringent legislative remedies that address the underlying problems and that compel reforms to the CDC and NIH grant award process.

5.     Provide funding commensurate with the severity and magnitude of the epidemic and assurance that most grant awards will be based on tangible benefits to patients.

6.     Implement “Root cause analysis,” similar to that undertaken by the airline industry, to ensure that a process is put in place to prevent corrupting influences from hijacking research and patient care in the future.

7.     While the issues in this document are under review, call on CDC to immediately end the endorsement and promotion of the 2006 IDSA guidelines, so patients will not be further harmed by the dissemination of inaccurate and highly biased information.

Current and Past Efforts

Current and past efforts to address the problems outlined in this document are discussed below.

Federal Legislation

Federal bills to address the Lyme disease epidemic have been introduced almost every year from 2007 to present, but none have been enacted

Senate bill S.1503, the Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2015, is currently under consideration in the U.S. Senate. In addition to bills, such as S. 1503, stringent legislative remedies are needed to address the underlying problems and compel reforms of the CDC and NIH grant award process.

Congressional Hearings

Links to past Congressional hearings on Lyme disease are provided below:

August 5, 1993 - Lyme Disease: A Diagnostic and Treatment Dilemma.

July 17, 2012 - Global Challenges in Diagnosing and Managing Lyme Disease—Closing Knowledge Gaps

August 30, 2012 - Lyme Disease: A Comprehensive Approach to an Evolving Threat

Unfortunately, little has been done to address the problems identified in these hearings. As a result, hundreds of thousands of Lyme patients continue to suffer.


Citizen petitions that have been presented to CDC, Congress, and the White House include:

End Preferential Treatment of the IDSA Guidelines for Lyme Disease - Centers for Disease Control and Prevention

Calling for Congressional Investigation of CDC, IDSA & ALDF - U.S. House of Representatives, U.S. Senate

Legalize Lyme Disease - President Barack Obama, U.S. House of Representatives, U.S. Senate.

Unfortunately, no action has been taken on these petitions to date.

IDSA Guidelines Review

On March 9, 2015 IDSA released a project plan to update its guidelines. There are no indications from IDSA, however, indicating that any significant changes will be considered. To the contrary, some of the panelists recently published a series of articles that strongly suggest the IDSA position on the diagnosis and treatment of Lyme disease will not change.

Even if the new guidelines reflect current science and are fully compliant with Federal standards, preferential treatment would still be illegal. In the interim, the preferential treatment is much more serious, because of the ongoing harm to large numbers of patients.

Resources for Additional Information

Social & Economic Impact

Economic Impact of Lyme Disease (Emerging Infectious Diseases, April 2006)

Severity of Chronic Lyme Disease Compared to Other Chronic Conditions . . .

Lyme Disease Costs Up to $1.3 Billion Per Year to Treat, Study Finds

Diagnosis and Prevention

Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases:

Two-Tiered Lab Testing for Lyme Disease—No Better Than a Coin Toss . . .

Diagnostic challenges of early Lyme disease: Lessons from a community case series

The Lyme Vaccine: A Cautionary Tale

Clinical Practice Guidelines

The Infectious Diseases Society of America Lyme guidelines: A Cautionary Tale about the Development of Clinical Practice Guidelines

Lyme Retreatment Guidance May be Flawed

Legal / Ethical

Findings of Richard Blumenthal’s Anti-Trust Investigation of IDSA

Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines


Review of Evidence for Immune Evasion and Persistent Infection in Lyme Disease

Antibiotic Retreatment of Lyme Disease in Patients with Persistent Symptoms: A Biostatistical Review of Randomized, Placebo-Controlled, Clinical Trials

Lyme Disease May Linger for 1 in 5 Because of “Persisters”

Culture Evidence of Lyme Disease in Antibiotic Treated Patients Living in the Southeast

Biology of Lyme Disease: An Expert’s Perspective

Proof That Chronic Lyme Disease Exists

Other Resources

Under Our Skin (award-winning documentary)

Cure Unknown: Inside the Lyme Epidemic (book)

Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease (book)

CQ Researcher Lyme Disease v.23-40