Chronic Lyme Disease: Background information when reading Sick

Chronic Lyme Disease

This article relates to Sick

Porochista Khakpour's Sick is a memoir of living with chronic Lyme disease. Lyme disease is caused by a bacterial infection, specifically a bite from a tick bearing the Borrelia burgdorferi bacterium. B. burgdorferi is one of just a few spirochetes, or 'spiral-shaped' bacteria, to be identified to date. (The pathogen that causes syphilis is another.) In the USA, the hot spots are the Northeast (from Maine to Virginia), the West coast, and Wisconsin and Minnesota. In these areas, hiking, gardening, and walking a dog through tall grass are considered particularly risky activities. Lyme disease also occurs in Europe and Asia.

Tick bites often result in a noticeable bull's-eye rash, but not always. The rash is not necessarily indicative of Lyme, but if one does present itself, it's a good idea to get a blood test to rule out the disease. Other signs that can appear almost right away include swollen lymph nodes and cold- or flu-type symptoms. If diagnosed and treated immediately with a course of oral antibiotics, Lyme disease can be cleared up within a matter of weeks; however, often it goes undiagnosed and thus untreated for long periods of time, and this can lead to permanent health issues which may be mitigated with later treatment but not fully cured. Physicians sometimes describe patients who have non-specific symptoms (like fatigue, pain, and joint and muscle aches) after the treatment of Lyme disease as having post-treatment Lyme disease syndrome (PTLDS) or post Lyme disease syndrome (PLDS). The reasons that symptoms appear to linger, even after apparently successful treatment, are not understood.

Chronic Lyme Disease (CLD) is distinct from untreated Lyme Disease or PTLDS. CLD's very existence is controversial: patients often have no antibodies in their blood serum that link the symptoms to the Lyme Disease bacteria. Treatment of CLD is equally controversial; given the lack of a direct causal link, most medical authorities discourage long-term antibiotic treatment (which carries its own risks) but patient advocate groups and lobbyists have pushed through legislations in several American States to allow this treatment.  Despite this controversy, CLD has been given a clinical definition in a scientific journal: "For the purpose of the ILADS [International Lyme and Associated Diseases Society] guidelines, 'chronic Lyme disease' is inclusive of persistent symptomatologies including fatigue, cognitive dysfunction, headaches, sleep disturbance and other neurologic features, such as demyelinating disease, peripheral neuropathy and sometimes motor neuron disease, neuropsychiatric presentations, cardiac presentations (including electrical conduction delays and dilated cardiomyopathy), and musculoskeletal problems." (Cameron, Gaito, Harris, et al., "Evidence-based guidelines for the management of Lyme disease," Expert Review of Anti-infective Therapy 2004; 2 (Suppl. 1): S4.)

In terms of symptom severity and quality of life, surveys have suggested that CLD patients lead extremely challenging lives, often having to go on disability because they have trouble keeping up with their work. Sick is an illuminating account of a disease that remains poorly understood.

Note: Author Amy Tan has also written a thorough account of her experience of Lyme disease on her website.

Filed under Medicine, Science and Tech

This article relates to Sick. It first ran in the August 1, 2018 issue of BookBrowse Recommends.