Encephalopathy: From a patients perspective

“Lyme Fog” - Cognitive Losses & Steps Toward Recovery

My struggle with Lyme Disease began in 1984 with a week of serious illness that seemed hardly more alarming than a severe case of the flu. Within a few months of the initial symptoms, however, my health continued to spiral downward. Disease of various internal organs soon followed. Within a years of my diagnosis, which was more than a year coming, I suffered through long episodes of heart block, the extremely swollen and feverish joints of Lyme Arthritis (shoulders, knees, fingers, hips, mandible), gallbladder disease, ongoing serious and irreversible spinal deterioration, fibromyalgia, and the worst one of all for me, a writer, Lyme Encephalopathy.

“Encephalopathy” means “disease of the brain.” The hallmark of encephalopathy is an altered mental state, which among Lyme Disease patients, came to be called “Lyme Fog.” Under the curtain of this “fog,” a person can get lost in an area where she has skillfully navigated her car for forty years, or she can find it impossible to recall and use familiar words. Some of the precious facts of her life just disappear from her memory. A carpenter might “forget” many of his skills and lose the language that describes his tools and his work. Anyone might be unable to recall how to unlock their own front door. Research has shown, “The overall pattern of intellectual impairment is not unlike that seen with diffuse brain injury (1).”

At about six years into my illness, I lost the language of my profession, Poetry, and I could no longer do my job as a Resident Poet in the Schools, a wonderful position funded by my state’s Council on the Arts. My memory loss progressed to a point where I lost all recollection of a particular period of time, the nine most active years of my children’s early lives, from preschool to 8th Grade. After performing numerous diagnostic tests, scans, spinal punctures and imaging studies of my brain, doctors determined the cause of this heartbreaking loss was Lyme Encephalopathy.

This diagnosis explained a lot. Common symptoms of encephalopathy include progressive loss of memory and cognitive ability, subtle personality changes, inability to concentrate, lethargy, and progressive loss of consciousness. Other neurological symptoms may include myoclonus (involuntary twitching of a muscle or group of muscles), nystagmus (rapid, involuntary eye movement), tremor, muscle atrophy and weakness, dementia, seizures, and loss of ability to swallow

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