Part 1: The Battle for Chronic Lyme Disease

To raise awareness of recent Lyme disease science, Lorraine Johnson, JD, MBA, Chief Executive Officer at LymeDisease.org and Dr. Raphael Stricker, Director at the International Lyme & Associated Diseases Society (ILADS) describe the findings of a leading peer-reviewed article, Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey.

In this two-part social media series, Bayer HealthCare Animal Health connects with these thought-leaders to raise awareness of Lyme disease Awareness Month, leading science from the peer-reviewed article, and how people can apply this science to their everyday lives. 

In Part 1, we learn why chronic Lyme disease is an important and controversial disease, why its awareness is necessary, and how this new science builds the Lyme disease conversation. 

1. What is chronic Lyme disease? 
Lyme disease is the most common vector-borne disease in the United States. It is caused by the spirochete Borrelia burgdorferi and transmitted via tick bites. In its early, or acute, form, the disease may cause a hallmark erythema migrans (EM) rash and/or flu-like symptoms such as fever, malaise, fatigue, and generalized achiness (Aucott et al., 2009). Unfortunately, many patients are not diagnosed early because tick may be as small as a poppy seed, its bite is painless, and the hallmark EM rash does not occur in a significant percentage of patients (Aucott et al., 2009). As such, “chronic Lyme disease” is ill-characterized and not yet formally recognized by the medical profession. Even the U.S. Centers for Disease Control refers to the lingering effects, after more than 2-4 weeks of Lyme disease antibiotic treatment, as “Post-Treatment Lyme Disease Syndrome” (PTLDS).

2. Why is chronic Lyme disease an issue?  
Everyone agrees that some people with Lyme disease remain ill after treatment. However, there is disagreement regarding the cause of these symptoms and the best way to treat them. This is an issue because currently there are no commercially available lab tests that can confirm the existence of the infection after treatment. Nor are there any tests that can confirm the eradication of the infection after treatment. Medical specialty organizations differ in what to do for these patients. The Infectious Diseases Society of America (IDSA) believes that after a short course of antibiotics patients should not be treated any further. The International Lyme & Associated Diseases Society (ILADS) believes that continued treatment may be appropriate.  For patients who remain profoundly ill after short term treatment, the availability of additional treatment options is important.

3. Why is information about chronic Lyme disease important?  
The CDC estimates that roughly 300,000 people (approximately 1% of the U.S. population) are diagnosed with Lyme disease each year (Centers for Disease Control and Prevention, 2013b). This figure is 1½X higher than the number of women diagnosed with breast cancer each year in the USA (approximately 200,000), (Centers for Disease Control and Prevention, 2013a) and 6X higher than the number diagnosed with HIV/AIDS each year in the USA (50,000) (Centers for Disease Control and Prevention, 2013c)! A proportion of patients with Lyme disease develop debilitating symptoms that persist in the absence of initial treatment or following short-course antibiotic therapy. This condition is commonly referred to as post-treatment Lyme disease (PTLD) or chronic Lyme disease (CLD). It is estimated that as many as 36% of those diagnosed and treated early for Lyme disease remain ill after treatment (Aucott et al., 2013).   
Estimates of the number of people who do not get better in the short term vary but range between 15-36%. The population of patients with chronic Lyme could easily exceed 1M and continues to grow. The cost of late and chronic Lyme disease (including loss of productivity) is estimated to exceed $20,000 per year per patient, while the cost of early Lyme disease is about $1,600.

4. Why is the report, Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey, important?  
People know that chronic Lyme disease is a problem, but we still need more information about quality of life impairment, the disease’s impact on ability to work and the healthcare utilization of patients with chronic Lyme. To our knowledge, this report is the first large-scale survey of patients with chronic Lyme disease addressing quality of life issue. We had over 5,000 patients respond to the survey. The sample size was large enough to be able to look at subsets of patients. For instance, we could use stringent inclusion criteria using only those with an erythemia migrans rash or CDC positive two-tiered serology. This increases the sample validity.  We asked standardized CDC questions regarding quality of life.  These allowed us to compared chronic Lyme patients to other diseases as well as to the general population. 

In Part 2: The Battle for Chronic Lyme Disease, we delve deeper into the key findings, and we ask if those with chronic Lyme disease have pets or were exposed through pet contact.