More testimony given to the Institute of Medicine about Lyme disease. Lyme Times Associate Editor Pam Cocks, the mother of two adult children with Lyme, points out that all of the controlled trials cited by the IDSA guidelines involved a mere 221 patients.

The Institute of Medicine, part of the National Academy of Sciences, is examining the “state of the science” regarding Lyme disease. In April, the IOM heard from various scientists. Recently, the IOM committee held the second of several “listening sessions” via telephone conference call, which allowed Lyme patients and advocates to give input.

My name is Pam Cocks. I have a Masters of Library Science and a Masters of Public Health.  I have worked in health policy and planning, and served many years on a children’s hospital board during which time I chaired the Quality Assurance Committee. I serve as associate editor of the Lyme Times, the quarterly journal of CALDA (the California Lyme Disease Association). 

Born and raised in northern California, I am raising my family in the SF Bay Area. Both my children – aged 28 and 22 – went undiagnosed for years and remain positive for Lyme by CDC standards. Neither recalls a tick bite or EM rash.

As I edit material for the Lyme Times, I review news about the perplexing, complicated science and medicine of Lyme. I watch with interest the unfolding public health issues while orchestrating the pressing needs of my two Lyme patients.

Given your charge, I am hopeful the IOM might alter the course of this disease.

Regarding the state of the science, it can only be described as unsettled. The bacterial spirochete that causes Lyme has proven elusive. The best approach to treatment remains controversial, involving too much opinion filling in for evidence in the face of uncertainty.

The majority of recommendations in the IDSA Guidelines are based on expert opinion, not on high-quality research studies. Much criticism has revolved around study designs, and results have been mixed. But in the end, a mere 221 patients have been involved in ALL THE CONTROLLED TRIALS completed and cited in the Lyme literature.  Faced with such scientific uncertainty, more latitude should be given doctors to use their clinical discretion.

The fight against this disease is being impeded by our tepid national effort. This impasse will not serve us well as we face the growing spread of Lyme. Scientific research is critical to breaking the impasse. You are charged with identifying information gaps that could inform further investigation. At a minimum, we need research to determine whether existing serology lab tests are adequate or not before better diagnostic tests can be developed and better treatment protocols devised, especially for persistent Lyme disease.

You can help that happen.

Regarding the patient, my children’s stories are not all that unusual within the Lyme community. For years, their complaints were ignored, misunderstood, misdiagnosed and/or dismissed by doctors who were uninformed or wedded to the limited IDSA position. I am familiar with the role of clinical practice guidelines in hospital settings, but it would be difficult at the moment to write “The Lyme Cookbook” since what should work doesn’t always work in Lyme.

My children have struggled. My daughter has lost her job, and my son has fallen behind in his college classes; because of the IDSA Guidelines, my son’s college student health center would not facilitate his treatment on campus. Our family also knows the burden of debt from treatment expenses denied by our insurance. Unsettled science should not give cover to insurance companies to deny care for Lyme.

Some medical practices are ahead of the curve, successfully designing treatment protocols for patients to achieve wellness. Until the science of Lyme is better understood, however, patients require treatment choices and individualized care to manage their illness. Physicians must be permitted to exercise their clinical judgment, and patient preferences must be considered. Neither benefits from the current inflexible guidelines based on so-called “expert opinion.” Lyme patients would welcome quality care based on scientific evidence.

You can help that happen.

Regarding the public’s health, it is understandable that a non-communicable disease not famous for fatalities might be sidelined amidst other dramatic public health challenges. But heed the rise in both the incidence and prevalence of Lyme. CDC estimates of new cases have been increasing, and the number of patients remaining ill is growing. Because treatment failures in Lyme are the rule not the exception, new cases are added every year to the existing chronic population. This promises to create a huge burden on our health care system, as most of these people are disabled, lose their jobs and insurance, and become dependent on government-provided services.

Lyme represents a cost to society as well as to the patient. There is the cost of treatment, and the cost of NOT being treated or being UNDERTREATED (Zhang study). Good medical care can be cost-effective. In the case of Lyme, effective medications are available and can be prescribed by knowledgeable physicians free to exercise their clinical judgment.

You can help that happen.

Your expert scientific analysis could help resolve the unproductive Lyme debate and support the beginning of a solution.  Thank you in advance for making a difference.