Dealing With Chronic Lyme Disease, Navigating the Health Care System

This deer tick, or blacklegged tick, Ixodes scapularis, as it was questing on a blade of grass. The Lyme disease bacterium, Borrelia burgdorferi, is spread through the bite of infected ticks. The blacklegged tick spreads the disease in the northeastern, mid-Atlantic, and northcentral United States, while the western blacklegged tick, Ixodes pacificus, spreads the disease on the Pacific Coast. Photo credit: CDC

According to the CDC, there are approximately 20,000-30,000 reported cases of Lyme disease annually. Named after the town of Lyme, in Connecticut, after the area experienced a small cluster of cases in both adults and children in 1975, it had been around for a number of years but not identified until then. Fast forward to today, and there are factors that are making Lyme disease grow into the largest vector-borne disease in the US.

These factors include climate change as well as evolving land use patterns such as reforestation.¹

A new documentary, I’m Not Crazy, I’m Sick, looks to shine a light on the difficulties associated with the disease. The documentary covers the physical, emotional, and financial struggles caused by Lyme disease, emphasizing the need for greater awareness, reliable testing methods, and accessible treatment options. Physicians, researchers, and advocates provide insights into the science and politics surrounding Lyme disease.

Most people who develop Lyme disease are treated with antibiotics and see a resolution of symptoms. However, the disease can become chronic and debilitating. “In some patients, symptoms, such as fatigue, pain and joint and muscle aches, persist even after treatment, a condition termed “Post Treatment Lyme Disease Syndrome (PTLDS). The term “chronic Lyme disease” (CLD) has been used to describe people with different illnesses,” the National Institutes of Health writes on its website.

And for people in this group, there can be ongoing issues of navigating the health system. The documentary follows 3 families and a WNBA professional basketball player, Elena Delle Donne, who have all battled Lyme disease and had this experience of dealing with a long path to diagnosis and treatment. For those interested in watching, viewers can see it on the following streaming services: Apple TV, Google Play, and Amazon Prime Video.

Certainly, the health care system is challenged in dealing with chronic diseases and ailments such as pain or most recently postacute sequelae of SARS-CoV-2 infection (PASC) or long COVID. One new study surveyed various groups including, people with long COVID, adults with past COVID-19 infection but no long COVID, and people with no history of COVID-19. Of the 3 groups, the long COVID group reported more unmet care needs in the past 12 months than the other 2 groups. People dealing with chronic conditions can often feel ignored or that their issues are psychosomatic.

Although issues remain for people with chronic Lyme disease, the film looks to create a call to action for those suffering through it and help make things better for them.

For those who do not have the disease, there are some strategies to try and avoid it. Monica E. Embers, PhD, associate professor Tulane University, recently did a Q & A on this topic with Contagion and she offered information for the public and clinicians to consider about this emerging vector-borne disease.

Contagion: Although Lyme disease can be treated with antibiotics, for those not familiar with it, what are the health challenges associated with contracting it?
Embers: Lyme disease results from a systemic bacterial infection, so many different organ systems can be affected. Patients often experience a range of symptoms that can include fatigue, muscle and joint pain, cognitive problems, cardiac symptoms and arthritis. Although antibiotic treatment can be very effective when patients are treated early, the prognosis can become worse if treatment is delayed. Therefore, early diagnosis leads to better outcomes.

Contagion: Are we going to see an increase of incidence rates related to vector-borne illnesses such as Lyme disease going forward?
Embers: Yes. The incidence of Lyme and other tick-borne diseases has been increasing every year. This is due to several factors, but the spread of tick populations and the abundance of reservoir hosts (mostly small rodents) has been linked to the increased number of cases in the US and Europe.

Contagion: What should clinicians keep in mind when see patients and thinking about differential diagnosis and the possibility of a patient having Lyme disease?
Embers: It is important to know that the diagnostic tests are not very sensitive. This means that there are a high number of false negative tests, especially in the early (acute) phase. The bullseye rash is considered to be an indication of infection, but it can manifest differently, or not at all, in some people. It is important to use as many indicators as available, both clinical and laboratory, to make a diagnosis. It is also important to consider possible coinfections (such as Babesia or Anaplasma) after a tick bite and test for those as well.

Contagion: Is access to treatment been an ongoing issue?
Embers: It will probably be an ongoing issue, given the controversy in the medical community about how best to treat Lyme if it becomes chronic. We are working to find better treatment regimens, but until the disagreement over treatment type and duration is resolved, patients could find themselves searching for clinicians willing to treat their condition.

Contagion: What are the best ways to avoid Lyme disease?
Embers: It is important to be proactive about preventing tick bites. When outdoors, stay on clear paths and avoid tall grasses, perform tick checks (realizing that they are very small) and use insect repellants. If you have an attached tick, pull it out from the mouthparts with tweezers and save it. The tick species will tell the health care provider what pathogens could have been transmitted.

References
1. Division of Vector-Borne Diseases. CDC. Page last reviewed May 11, 2022. Accessed June 2, 2023. https://www.cdc.gov/ncezid/dvbd/media/lyme-tickborne-diseases-increasing.html