The neurocognitive effects of Lyme disease: The standard of care is changing

Whittier Rehabilitation Hospital was host to an audience of school nurses and nurse case managers at a special presentation entitled “The Neurocognitive effects of Lyme Dsease”. The speaker was Dr. Michael Sefton, Director of Neuropsychology and Psychological Services at the hospital. Lyme disease was first recognized in 1975 when a cluster of pediatric cases of severe arthritis was identified and ultimately linked to the common occurrence of deer tick bites as a possible source of the infection. The disease is not new and similar variants of the infection have been seen in the upper mid-west and in Sweden. The standard of care has gradually changed especially in terms of definitive antibiotic therapy and the course of therapy.  Physicians who treat Lyme now prescribe a 12 week course of antibiotic often – oral doxycycline sometimes followed by 2 weeks of a broad spectrum antibiotic. With antibiotic treatment, physicians have greatly reduced the use of antibiotic medicine because of the growing problem of super bugs – less is more when it comes to prescribing antibiotic therapy.  
The Northeast has the highest incidence of Lyme disease in the country with 20,000 cases reported annually. According to the CDC, as many as 90 % of cases go unreported. Lyme disease can cause significant senility to those bitten by infected the Blacklegged deer tick – the most commonly found member of the Arachnid  family in the region. If you do the math that suggests the true incidence of Lyme may be as high as 150,000 to 200,000 cases annually. Arachnids share phylogenetic ties with spiders, mites, and scorpions. Meantime, the population of Lyme bearing ticks is growing. Ticks are arachnids and are carnivores deriving their nutrition from the blood of neighboring hosts. The life span of the Blacklegged tick is about 2 years and they feed 3-4 times during their lifetime. The disease is tough to treat and carefully administered treatment is needed to alleviate symptoms. 
“Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart” according to the Lyme Disease Organization website.
We are referred Lyme disease cases a few times each summer here at Whittier although ticks are active year-round. The bite leaves a telltale bulls eye bite with a red ring that can grow as big as 12 inches. The bite can be prickly, hot, and painful but the worst part of getting bit by a tick is the risk of developing full blown Lyme disease. Physical symptoms are broad including flu-like symptoms, headaches, fatigue, muscle pain, joint pain, changes in sleep hygiene, and cranial nerve involvement. Over 60% of Lyme patients describe moderate cognitive impairment and very often poor mood regulation – sometimes Lyme rage – from the loss of mood stability in the brain. The claims of “Lyme brain” and “Lyme fog” are well documented and equally debilitating as the physical sequelae. 
The neurobiological underpinnings evolve from the Borrelia bacteria seeding across the blood brain barrier and other organ systems. I have a male patient who developed cardiac arrhythmia among his symptom profile and must now be treated for this. Once the bacteria enters the CNS the inflammation associated with the infection can be misidentified as dementia especially in the absence of the prototypic bulls eye coupled with the delay in getting treatment. The delay often stems from 2 factors: the first has to do with awareness.  Only 50% of people with tick bites have any memory of being bitten by a tick.  This makes it hard to prescribe the standard treatment for Lyme and second; diagnostic lab tests often come up falsely negative because of a lack of antibodies in serum to suggest that an infection is cooking. In some of my patients they have been seronegative for greater than 6 months before finally getting aggressive antibiotic treatment. A negative blood  test is nothing to celebrate when you are unable function because of debilitating fatigue, mental fogginess, slow processing, limited cognitive endurance, headaches, decreased working and short-term memory. 
Family pets often carry ticks and usually test positive for the Borrelia tick bacteria.
Photo by Julian Paolo Dayag on

I have had several patients suffer for over 3 years from the ravages of tick bites and have been told that some have died from the consequence of being bitten. There is now a “post-Lyme syndrome” for the 15 percent who have chronic symptoms last over 1 year after treatment. For them the decreased mental energy and foggy feeling of Lyme disease is compounded by months of frustration and delayed or incomplete treatment. Many require a period of disability where they are removed from their jobs and allowed to focus on the rehabilitation and finding themselves in all the unfocused fog, forgetting, and the new pace of life.

Lyme disease if a debilitating condition that starts with being bitten by Borrelia tick who infects its host sometimes as soon as 15 minutes after the bite. Symptoms can be severely debilitating including depression. The majority of cases have neurocognitve deficits that are co-occurring with the physical debility. Together Lyme disease is a formidable affliction that no person should experience. Here in the Northeast our primary care providers should become better trained in the diagnosis and treatment of Lyme and not leave the specialty care to the large medical centers often unavailable to the rural population.

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