Lyme Disease Resources

Tips for Avoiding Lyme Disease:

  • When you are outside, here are some recommendations to help prevent Lyme disease.
  • Try to avoid tall grass and dense vegetation.
  • Walk in the middle of mowed trails, if possible.
  • Keep your lawn cut and your underbrush thinned.
  • Get rid of areas where rodents may like to live.
  • Wear light-colored clothing so that ticks are easier to see.
  • Tuck your pants into socks; tuck shirt into pants. Pull hair back.
  • Wear long-sleeved shirts buttoned at the wrists.
  • Check every 4 to 6 hours for ticks. Don’t forget children and pets.
  • Use a tick repellent that contains 30 percent DEET to exposed skin.
  • Pre-treat clothes with .5 percent permethrin, an insecticide that both kills and repels ticks.
  • Investigate tick control methods for your pets.

What is Lyme Disease?

Lyme disease is a bacterial spirochete, named Borrelia burgdorferi, transmitted by ticks and may be accompanied by several co-infections. Lyme disease is growing at four times the rate of AIDS and is quickly becoming our nation’s most misdiagnosed and fastest-growing infectious disease. Estimates state that only one out of every ten cases of Lyme disease is reported and that many people are misdiagnosed.  Over 38,000 cases reported by the CDC in 2009 are more likely estimated to represent over 380,000 cases. Lyme disease may be difficult to diagnose, because many of its symptoms mimic those of other disorders like multiple sclerosis, arthritis, chronic fatigue syndrome, lupus and Alzheimer’s disease. In addition, the only distinctive hallmark unique to Lyme disease, the “bulls-eye” rash, is absent in almost half of the people who become infected. The inadequacies of today’s laboratory tests make proper diagnosis difficult, because they were meant for surveillance purposes rather than diagnosis. Misdiagnosis of the infection can lead to protracted disease that is difficult to treat.

Lyme disease can attack virtually any system in the body. Some of the first symptoms may include a rash and flu-like conditions including but not limited to fever, chills, headache, stiff neck, achiness and fatigue. Other symptoms can include pain in various joints and muscles, neurological problems, heart involvement, changes in vision or hearing, migraines, low-grade fever and other symptoms. Lyme disease, if left untreated, is far more difficult to treat because the infection can spread to other parts of the body.

People and Congress Need to be Educated, Something Needs to be Done

It has been over sixteen years since the U.S. Congress has investigated Lyme disease, its diagnosis, treatment, and the issues surrounding its late-stage form. Lyme disease bills have been introduced repeatedly, but none have passed. One of NatCapLyme’s goals is to raise awareness and request a new congressional hearing to enable our legislators to facilitate unbiased research. Pam Weintraub clearly states this need in Cure Unknown, “…If we are ever to unravel the mysteries of Lyme disease and find a cure, it is science— pure and unadulterated—that will lead us home.” The releases of the documentary film Under our Skin and the book Cure Unknown present the Lyme community with an unprecedented opportunity to educate our federal elected officials about the disease and the incredible toll it takes in human suffering.

Recently Released Institute of Medicine (IOM) Report on Lyme Disease

April 28, 2011 By  Leave a Comment (Edit)


Contact: Monte Skall (703) 821 8833

Washington, DC – Thursday, April 21, 2011.  The Institute of Medicine (IOM) released their report on April 20, 2011, on “The Critical Needs and Gaps in Understanding Prevention, Amelioration and Resolution of Lyme and Other Tick-Borne Diseases.” The report confirmed what Lyme patients have known for years – that Lyme disease is a serious illness, and significant gaps remain in our understanding of the disease.

At the request of the National Institute of Allergy and Infectious Diseases (NIAID), the IOM was entrusted to plan and hold a two-day workshop to assess the state of the science of Lyme and other tick-borne diseases.  A committee was formed, which provided a forum for broad scientific and public input, and produced a summary report on the critical needs and gaps in research.

Although we share the concern with many in the Lyme community that treatment was not included in this workshop, we are pleased that other critical themes were addressed. The National Capital Lyme Disease Association (NatCapLyme) would like to thank the IOM for completing this arduous task with integrity within the guidelines they were charged to respect.

Pamela Weintraub’s powerful presentation at the IOM workshop last October made a notable impression on the IOM Committee.  In its preface, the IOM Committee wrote: “Pamela Weintraub spoke eloquently about her personal experience and her family’s challenges with Lyme Disease.” Echoing Pamela Weintraub’s call for research, the IOM report states that “a new environment of trust and a better environment for more constructive dialogue [is required] to help focus research needs and achieve better outcomes.”

We commend the IOM for so effectively establishing the convergence of science with real-life situations and highlighting both the need for more scientific knowledge and the serious societal challenges that need to be addressed.

Importantly, the IOM Committee noted that “the burden of disease is a growing concern.” The Committee recognized that “tick-borne diseases (TBDs) represent some of the world’s most rapidly expanding arthropod-borne infectious diseases, yet significant gaps remain in our understanding and knowledge about them.”  Some of the themes discussed in the IOM report suggesting greater emphasis and more research are:

  • A national integrated research plan for advancing the science on tick-borne diseases;
  • A long-term study of Lyme disease and other TBD patients; Educational programs for the public;
  • The current status of diagnostic tests and biomarkers for tick-borne diseases;
  • Biorepositories for tick-borne diseases; Biological understanding of persistent symptoms;
  • The impact of coinfection in severity of human TBDs;
  • The role of immune response to tick-borne infection and its effect on bacterial load and disease manifestations;
  • Animal models that explore mechanisms of pathogen persistence following antibiotic treatment.

A diverse group of scientists and physicians with expertise in tick-borne infections discussed a breadth of scientific topics. Some profound insights shared by several of these presenters include:

  • “Science is not belief, but the will to find out” (Benjamin J. Luft, M.D.)
  • “Everyone is studying the early stage of this infection, no one is studying the persistent phase of this infection.”  (Stephen Barthold, D.V.M., Ph.D.)
  • “You do not require an antibody response to develop this disease”  (Janis J.Weis, Ph.D.)
  • “Treat the patient, not the test”  (Juan Olano, M.D.)
  • “[For the child] long-term effects last 50-70 years”  (Richard F. Jacobs, M.D.)
  • “…the poor understanding of the true incidence and geographical distribution…I don’t think we have a clue”  (Richard F. Jacobs, M.D.)
  • “How can you say, ‘I’ve treated you for four weeks and therefore you no longer have Lyme disease.’ The fact is, we don’t know!” (Sam T. Donta, M.D.)
  • “Under-powered studies which purport to demonstrate universal efficacy need to be viewed with circumspection”  (Sam T. Donta, M.D.)
  • “All that shouting drowns out all the complexity and the nuance and the work that needs to be done”  (Pamela Weintraub, senior editor at Discover magazine, and author of Cure Unknown: Inside the Lyme Epidemic)

In addition to thanking all the presenters, we want to express our gratitude to the Lyme community for supporting our effort to see this workshop through.  The thousands of Lyme patients who responded to our surveys and allowed their stories to be shared in “The Human Dimension of Lyme and Other Tick-Borne Diseases: The Patient’s Perspective,” the NatCapLyme paper commissioned by the IOM, provided a valuable contribution to the IOM workshop and report. (p. A-67)

We strongly urge each of you to continue the process that IOM initiated by reading the IOM report so that you can extract from these works what is beneficial to your specific case in your quest to achieve wellness and to overcome the negative effects of Lyme disease.

The IOM workshop brings us another step closer to improving the lives of Lyme patients and their families who have been profoundly impacted by tick-borne infections, and who have been caught in the crossfire of opposing views for such a long time.  The next logical step is collaboration between all stake holders to fill in the gaps uncovered in this workshop concerning diagnosis, addressing the topic of treatment, and the need for a consistency of language in discussing Lyme disease. “Medical progress should no longer be impeded by the polarizing controversy that has characterized Lyme disease research in the past. The dialogue must continue and encourage mutually respectful collaboration across scientific disciplines and among researchers, clinicians and patients, even when view points differ, if we are to make progress.” (Gregg Skall, Womble Carlyle Sandridge & Rice, PLLC)

We implore Congress to fund and the IOM to convene a second workshop that would address research needs for effective treatment for persistent Lyme disease.

P.O. Box 8211 · McLean VA 22106-8211 · Phone & Fax 703-821-8822 ·