Madison Area Lyme Support Group

In their article, Bransfield et al. describe two patients with complex, multisystemic illnesses, which included Lyme disease. Both patients suffered from debilitating symptoms over several years, which left them unable to walk and confined to a wheelchair. Doctors dismissed their complaints, which ranged from fatigue and weight loss to seizures and cognitive impairments. They were labeled as having “hysteria” and “wanting attention.”

From martial arts athlete to wheelchair-bound

The first case involved a healthy, athletic 18-year-old female who was skilled at Taekwondo. The girl developed a Bull’s-eye rash, followed by Bell’s palsy. Over a 4-year period, she became increasingly disabled and eventually required a wheelchair. She also suffered from seizures.

The girl’s symptoms included: cognitive impairments (attention, memory, processing speed, concentration/executive functioning), tactile hypersensitivity, sun sensitivity, orthostatic hypotension, weight loss, fatigue, non-restorative sleep, pelvic pain, difficulty urinating, headaches, peripheral neuropathy, muscle atrophy, cervical radiculopathy, hair loss, costochondritis, subluxation of multiple joints, and generalized pain.

Clinicians initially diagnosed her with fibromyalgia, “wanting attention,” chronic fatigue syndrome, hypoglycemia, and pseudoseizures, according to Bransfield.

However, she was eventually diagnosed with late-stage Lyme borreliosis with multisystem symptoms, along with porphyria, Ehlers-Danlos/ALPIM syndrome (anxiety-laxity-pain-immune-mood) with seizures caused by increased intracranial pressure from cranio-cervical instability, writes Bransfield.

Upon further evaluation, clinicians diagnosed the girl with complex partial seizures, rather than ‘pseudoseizures.’

“The patient was subsequently treated,” writes Bransfield, “and is now physically active, married, and leading a productive life.”

From ‘hysteria’ diagnosis to encephalitis

A 12-year-old girl from England suffers from leg pain and is diagnosed with reactive arthritis. She is admitted to the hospital complaining of “excruciating headaches, a complete loss of balance, and involuntary jerking movements,” explains Bransfield. The girl was discharged but her symptoms worsened.

One clinician’s assessment described the girl’s condition as “Hysteria, possible conversion disorder.” The patient “was left deteriorating and untreated, by which time she was having constant seizures and needed a wheelchair,” writes Bransfield.

Unfortunately, doctors ignored repeated requests by the mother to consider Lyme disease, as the family lived in an endemic region and other family members had been infected.

The girl was moved to another clinic where she was diagnosed with “encephalitis and possible encephalomyelitis (inflammation of the brain/brainstem/spinal cord), probably due to Lyme disease,” writes Bransfield.

She immediately began IV antibiotics and within 36 hours, the girl’s seizures had stopped and her headaches began to subside. Tests for Lyme disease came back positive.

After 2 months of IV treatment, the patient was able to walk again. But once antibiotics were stopped, the symptoms returned. The girl continued treatment in the United States but reported having persistent symptoms due to a delay in treatment.

Making the diagnosis can be difficult.

“Some healthcare providers have great difficulty understanding and making an accurate diagnosis when these symptoms are present and categorize them as being ‘vague’ or ‘subjective’ symptoms and, therefore, less valid,” writes Bransfield.

Individuals can be mislabeled as hypochondriacs.

“The number and the complexity of these symptoms can be overwhelming to the patient, and the patient may be labeled as being hypochondriacal, a psychosomatic illness, or having bodily distress disorder or somatic symptom disorder,” writes Bransfield.

“Historically, there has been a tendency to label physical symptoms that could not be explained as being of a psychiatric origin,” writes Bransfield.

“As a result, many patients with complex, confusing symptoms and poorly understood diseases who receive an inadequate assessment for their condition are often referred to psychiatrists until the time when the disease is better understood and defined.”