Lori

Current laboratory tests widely used for Lyme disease rely on indirect measures of infection based on the immune system’s antibody response to B. burdorferi—the bacteria which causes Lyme disease. Antibody tests are highly insensitive and miss a whopping 43% of Lyme disease cases. In addition, these tests can only determine past exposure to the bacteria, not active infection. They also cannot determine whether the infection has been eradicated.

Ticks are the number one vector of disease in the US and are second only to mosquitoes worldwide. Ticks frequently take blood meals from small rodents like rats, squirrels, and mice, which carry diseases. Diseases they pick up from these blood meals may then be passed on to their next meal ticket–which could be you. So how many pathogens can a tick transmit? A recent study from China provides some answers.

Dr. Paul Mead of the Centers for Diseases Control and Prevention (CDC) recently stated in the Wall Street Journal that the CDC’s recommended two-step process (which requires a positive ELISA test before a Western blot can be given) is accurate and was developed specifically to aid diagnosis of Lyme disease. A stunning assertion given that it directly conflicts with Dr. Mead’s previous testimony before the Connecticut Department of Public Health and the Attorney General’s office. It is also at odds with the CDC case definition for Lyme disease, which recognizes the validity of a stand-alone Western blot. This turnaround, coupled with LabCorp’s recent decision to abandon a stand-alone Western blot, has patients up in arms. And, rightly so.

On July 31, the FDA announced it would move forward with regulations to restrict cutting edge laboratory developed tests (LDTs), which have not required FDA approval before because they are not marketed to consumers. The new regulations would change that. Why should you care?

Today, the International Lyme and Associated Diseases (ILADS) has published its revised guidelines on treating Lyme disease! Too many patients fail the standard courses of antibiotics most doctors follow for treating tick bites and EM rashes. LymeDisease.org endorses new guidelines that offer a different approach. The guidelines are both evidence-based and patient-centered. I was a patient representative on the guidelines and one of the three authors.

Many of you know that I am a patient representative for the Patient Centered Research Institute (PCORI), a government funding organization that seeks to put patients at the center of research. Last week, I was fortunate to be a co-author of an article in Health Affairs—together with the lead team at PCORI. The article describes the importance of patient powered research. But what is patient powered research and why is it important to the Lyme community?

I have been getting calls lately from patients who go to the website of the American Lyme Disease Foundation (ALDF), mistakenly believing it is a patient website. It’s not, and it’s easy to get confused. You have LymeDisease.org (LDo), the “Lyme Disease Foundation” (LDF), and the “American Lyme Disease Foundation” (ALDF). All three sound like patient advocacy organizations, but the ALDF is not.

This week I spoke on a panel before an international audience of researchers, healthcare policy makers, and physicians at the HTAi (Health Technology Assessments International) conference in Washington DC. The topic was putting the patient at the center of healthcare. Dr. Karen Facey from the University of Glasgow asked the panel two questions: 1) what would effective engagement of patients in research look like, and 2) what is the biggest barrier to patient engagement in research. Let me explain why these questions are important to patients with Lyme disease.

The treatment guidelines of the Infectious Diseases Society of America dismiss persistent symptoms of patients with chronic Lyme disease (CLD) as no more than the “aches and pains of daily living”. After all, they reason many people complain of fatigue, arthritis, pain, emotional and cognitive dysfunction. The IDSA’s point is that symptoms of Lyme disease occur no more frequently than they do in the general population and that, at any rate, they are not serious—just minor aches and pains. But is this true? LDo’s recently published survey results say no.

LymeDisease.org’s recently published survey found that patients with chronic Lyme disease reported low quality of life. They had more days that were bad physically than the general population and than most other diseases. They suffer high rates of unemployment and disability. Even those who are able to work, often must stay home ill or reduce their hours. At work, many say they were unable to concentrate. The survey paints a graphic picture of lost productivity among those with chronic Lyme disease.