Abstract
Introduction
A powerful documentary, “Under our Skin: The Untold Story of Lyme Disease” (2006) described three-people’s experiences and the controversies of Lyme disease (Abrahams, 2015). Years after the documentary, this editorial illustrates that discouraging healthcare for people with Lyme disease and co-infections continue. I’d like to share two individuals’ narratives. In 2011, a 36-old-woman who worked, socialized and completed strenuous workouts at the gym experienced hair loss, joint pain, fatigue, muscle weakness, hypothyroidism, and memory issues. As her symptoms progressed, she lost 21 pounds in five days, as well as developed hypertension and tachycardia. Additionally, her body temperature registered at 95 degrees Fahrenheit. As she sought medical attention, she was accused by three physicians of abusing illegal drugs, having Lupus, and being mentally unstable. In her two-year fight for the correct treatment she experienced blindness, as well as poor kidney and liver function. Having Lyme disease and two co-infections affected her family dynamics, financial security, and attendance at work, as well as her mental, physical, and social well-being. The second narrative is about a woman who was 58-years old who developed lymphopenia and arthritis. In 2006, she also sought treatment from numerous doctors who misdiagnosed her with Alzheimer’s disease, hypothyroidism, osteoporosis, and poor kidney function. She had Lyme disease and five co-infections. The incorrect diagnoses and her cognitive, physical, and mental declines negatively impacted her participation in her leisure activities such as exercising at the gym, reading, and socializing with her friends. Additionally, she retired from her job due to her debilitating arthritis in her hands. In 2012, her International Lyme and Associated Diseases Society’s doctor began her correct treatment.
Background information about Lyme disease
Lyme disease, Borrelia burgdorferi, is a spirochete-bacteria, affecting individuals living in Europe, Northern Asia, and the United States (USA) (CDC, 2015b). In the USA, Lyme disease is most prevalent in the northeast (CDC, 2017a). Vectors, such as ticks, fleas, and mosquitoes transmit Lyme disease (CDC, 2018). Medical professionals report 300,000 cases per year (CDC, 2015a; CDC, 2017c). This statistic does not include co-infections, such as Babesia, rocky mountain spotted fever and anaplasmosis (CDC, 2017b). Co-infections left untreated also result in health problems.
According to the American Lyme Disease Foundation, Inc. (ALDF) (2018), the initial symptoms of Lyme disease may include: erythema migrans, joint pains, sore throats, chills, fever, and fatigue. As the infection spreads, symptoms develop such as severe fatigue with a stiff and aching neck, peripheral numbness and tingling, and/or facial palsy. Finally, years, months, or weeks later after the initial infection, severe headaches, painful arthritis, swelling of joints, cardiac abnormalities, cognitive disorders, and peripheral nerve damage may develop. Cognitive disorders include difficulty concentrating, balance issues, short and long-term memory loss, and speech difficulties (ALDF, 2018). Additionally, liver and visual problems may develop.
The Centers for Disease Control (CDC) (2018) reports the following safety measures to protect oneself from Lyme disease and co-infections: (1) recognizing that ticks live in warm, humid environments, (2) applying Environmental Protection Agency (EPA)-registered insect repellents to clothing and skin, (3) treating hiking gear and clothing with 0.5% permethrin, (4) performing daily total body tick checks, (5) treating pets with tick prevention and limiting their exposure to heavy wooded areas, and (6) landscaping one’s property free of shrubs, high grass, trees, and leaves near patios, playgrounds, and play areas, as well as using a chemical control agent on the grass to ward off ticks.
Controversies of Lyme disease
Controversies exist about Lyme disease testing, transmission, and treatments. Surprisingly, the CDC (2015a) estimates that the number of cases of Lyme disease may be 10 times higher secondary to the number of unreported cases and inaccurate diagnostic tools. Ignoring the 30 other strains of Borrelia bacteria (Giguere, 2013), the CDC (2015c) recommends a two-step process, using patients’ blood samples, testing for antibodies against Borrelia burgdorferi. The initial process step includes the enzyme immunoassay (ELA) or indirect immunofluorescence assay (IFA) tests. The second process step includes the immunoblot test, Western blot test. A positive blood sample in both steps means the patient is positive for Lyme disease. However, the accuracy rate for the ELISA and Western Blot tests are only 40% (Cook & Puri, 2016), causing patients inaccurate diagnoses and delaying treatments. The CDC does not recommend the IGeneX test; however, Giguere (2013) reports it as a more sensitive screener. The IGeneX test screens for more than one strain of the Lyme bacteria. Therefore, the statistical morbidity and financial strain reported by the CDC is probably conservative compared to the actual numbers.
The Infectious Diseases Society of America (IDSA) and the CDC support that Lyme disease is difficult to contract and simple to cure (Luche-Thayer, 2016; Lyme Disease Association, 2018). The College of physicians (2016) reports Lyme disease transmission occurs when ticks are attached to organisms for 24–48 hours. However, this writer questions how many individuals know the time that the parasite attached. Therefore, this information may provide a false sense a security to the public, supporting the treating physician’s reason not to administer antibiotic treatment. Moreover, physicians’ reasons not to administer antibiotic treatment includes the false negative results from the 40% accurate diagnosis tools.
Additionally, controversies include the Lyme disease treatment and existence of chronic Lyme disease, as well as Lyme disease mimicking other diseases (Lyme Disease Association, 2018). Lyme disease can mimic fibromyalgia, rheumatoid arthritis, depression, anxiety, obsessive-compulsive disorder, lupus, and multiple sclerosis (Horowitz, 2017). The CDC (2017d) does not support that chronic Lyme disease occurs. However, a condition, Post Lyme disease Syndrome occurs idiopathically, explaining the re-occurrence of symptoms. Additionally, the CDC (2017e) supports 10–21 days of antibiotic treatment with doxycycline 100 milligrams twice a day, amoxicillin 500 milligrams twice a day, or Cefuroxime Axetil 500 milligrams twice a day for adults. The CDC (2017d) supports their hypotheses by documenting single case studies, such as De Wilde, Speeckaert, Callens, and Van Biesen (2017) and Holzbauer, Kemperman, and Lynfield (2010), which found the life threatening (DeWild et al., 2017) and death (Holzbauer et al., 2010) effects of long-term-antibiotics for two patients. However, the CDC does not document the single case studies, supporting long-term antibiotic treatments and Lyme disease mimicking other diagnoses (Ahmedt, 2014; Kuhn, Grave, Bransfield, and Harris, 2012). For instance, Ahmet, (2014) found that a man diagnosed with amyotrophic lateral sclerosis with a blood serology that indicates possible Borrelia burgdorferi who was treated with the antibiotic doxycycline resulted in unremarkable clinical and electrodiagnostic findings. Additionally, according to Kuhn et al., (2012), untreated Lyme disease in four-children caused symptoms of autism and reduction of symptoms of autism occurred after six-months of antibiotic treatment. Therefore, the disconcerting fact is that chronic Lyme disease may occur, mimicking other diagnoses, limiting quality of lives in adults and children, and affecting participation in work, home, and social occupations (Ahmet, 2014; Horowitz, 2017; Kuhn et al., 2012).
Finally, less publicized controversies exist about Lyme disease. Dr. Raxlen proposed that there are more economical, cynical reasons that controversies exist (personal communication, August 29, 2018). As previously stated, Lyme disease and co-infections may mimic other diseases, demanding a life-time of pharmaceutical interventions. This demand results in large capital for the pharmaceutical companies. Therefore, this capital would be lost with the correct diagnoses and treatments. Additionally, if people believed the threat of Lyme disease, the fear may paralyze the real-estate market for the areas inundated with ticks. This fear may then, cause these areas to become unmarketable, negatively affecting the real-estate market.
Hope for patients with Lyme disease
The International Lyme and Associated Diseases Society (ILADS) (2018) includes physicians and healthcare works who courageously advocate for the cure of Lyme. They are a small percentage of physicians treating chronic or persistent Lyme disease. Dr. Raxlen was one of the original founders who facilitated the establishment of the ILADS organization in 1999 (R. Raxlen, personal communication, August 30, 2018). Presently, the ILADS organization is conducting research about Lyme disease and finding surprising results. Cameron, Johnson, and Malone (2014) used the Grading and Recommendation Assessment, Development and evaluation, which is an evidence-based assessment recommending treatment guidelines, wrote the present ILADS’ recommended treatment guidelines. The ILADS guidelines for treatment are extremely different compared to the CDC’s recommendations. The guidelines address treatment for finding a tick engorged and erythema migrans, as well as long-term antibiotic treatment for chronic Lyme disease symptoms. These guidelines are also supported by clinical trial studies with participants (37–78), resulting in medium to large effect sizes.
Furthermore, Luche-Thayer (2016) who is a consulting senior advisor of United States government describes how the Affordable Care Act of 2010 (ACA) protects people with chronic illness, insuring for long-term health care coverage and treatments. The ACA finally protects people with Lyme disease, allowing their treatments to be covered by health insurance. Disturbingly, insurance companies continue to deny coverage of long-term Lyme disease treatment due to it not being accepted as a chronic infection. Therefore, to avoid insurance companies reporting doctors who treat Lyme disease and co-infections with long-term antibiotics to medical boards, these physicians do not accept insurance.
Summary
After reading this editorial one can start to understand the devastating effects that Lyme has on individuals’ lives. The first case study was this writer. Dr. Raxlen treated both of the case studies in this editorial. This writer has practically unremarkable health, facilitating her ability to attend Boston University’s online Post-Professional Doctorate in Occupational Therapy program, work as a school-based occupational therapist, and practice yoga and exercise at the gym. The woman who is now 71-years old from the second case study also demonstrated significant medical improvements in her life as evidenced by doctors affirming that she is no longer diagnosed with hypothyroidism, lymphopenia, and osteoporosis. Additionally, she does not have the markers according to a positron emission tomography (PET scan) and magnetic resonance imaging (MRI) for Alzheimer’s disease. Most importantly, she participates in her occupations such as practicing yoga, exercising in gym classes, and reading novels. Both of these cases were diagnosed with the IGeneX lab. Both cases received consistent and pulsed-antibiotic therapy for over a year.
This writer almost did not share her story due to feeling ashamed of having a controversial disease. How many diseases result in seeking treatment from specialists whose treatments aren’t covered by their health insurance? How many diseases may result in the doctor losing his medical license as he or she fights for their patients’ treatments? How many patients are told their symptoms are psychosomatic? However, this writer’s journey of Lyme disease is true. Therefore, following the example of Dr. Raxlen, this writer advocates for Lyme disease and co-infections treatments by sharing her story.
Additionally, this writer’s non-unique story hopefully encouraged other occupational therapists and health professionals to educate the public about Lyme disease and co-infections due to the fact that these diseases negatively affect clients’ participation in their occupations. Our responsibilities should include educating the public that Lyme disease and co-infections may be a chronic illness, mimicking other diseases (Cameron et al., 2014; Kuhn, et al., 2012, R. Raxlen, personal communication, August 28, 2018) and there are safety precautions to protect oneself from Lyme disease and co-infections (CDC, 2018). There are more accurate diagnostic tools for Lyme disease, and it is the health care providers’ responsibility to acknowledge these tools. In the end, achieving the correct diagnosis quickly will facilitate people’s participation in their occupations.
Conclusion
This editorial’s case studies with persistent chronic Lyme disease are grateful to Dr. Raxlen administering long-term antibiotic treatment, facilitating their participation in their occupations. The future health care system’s recommendations include considering this alternative view point, enabling patients’ participation in their occupations and stopping inaccurate diagnoses. Inaccurate diagnoses impact adults’ (Ahmet, 2014) and children’s (Kuhn et al., 2012) quality of life, as well as these presented case studies. Furthermore, any illness that may cause children to be misdiagnosed with autism warrants the CDC recommending more accurate diagnostic tools and treatments, as well as acknowledging that evidence may support long-term antibiotic treatment. The controversy between ILADS providers and the CDC’s recommendations should be dissolved by the organizations presenting unified unbiased evidence, facilitating the correct treatment for people with Lyme disease and co-infections. This editorial was not written to address correct treatment for Lyme disease and co-infections. However, to educate health providers that long term-antibiotics may improve people’s quality of life and occupational therapists about how the diseases negatively impact people’s occupational performance, as well as advocate for research. Hopefully, as knowledge is shared, and research is completed there will be an improved understanding of how to stop the devastating effects of Lyme disease and co-infections.
Conflict of interest
None to report.