It is a busy morning. Running behind- a grabbed the next chart and headed for the exam room. The encounter sheet noted- new patient, "LYME." I entered the room and immediately noticed three people. There was a healthy appearing middle aged man, a healthy looking somewhat younger woman and a very elderly and sick appearing woman in a wheel chair.
"So who is the patient?" I inquired, secretly hoping it was not the lady in the wheel chair; but I knew otherwise.
I looked at my new patient. She looked ancient, weary and barely alive. She was incredibly thin, skin hanging on bones with a few strands of muscle. She couldn't speak or move. Her head fell to her chest; she was only able to keep her head in an upright position with help from the other woman, her caregiver. And yet, she managed a smile. I looked again at her virgin chart. She was 51 years only; the youthful gentleman was her husband.
"Well, I stammered, let me hear your story."
Her husband had only a thin folder with a few sheaves of paper. There was a clear history of tick bites. Her hair dresser once found a small tick embedded in her scalp. She had been an active outdoor person with dogs and horses.
And she had been perfectly well until some time in 2005.
They were country people. Her husband, a blue collar worker, was not the greatest historian; He told me what he could remember. It started with weakness in the right leg. A foot drop developed. The weakness spread to the other lower extremity associated with severe stiffness. Her condition gradually worsened, the weakness and stiffness spread and now affected her entire body. She had incapacitating anxiety and profound fatigue. Her speech became garbled, progressively, over the past year and one half. She was wheel chair bound for the last year and a half. Severe dysphagia- trouble swallowing, led to her dramatic weight loss. She was continent and maintained mental clarity, I was told.
In April 2006 she went to the Hershey Medical Center. She was told she had ALS. Nothing more was offered.
In July 2006, a friend suggested a Lyme test. It was positive. Her husband showed me an IgeneX IgM report, the IgG was missing. It showed positive bands in the 23,31,34,40 and 93 positions. It was noted to be CDC positive.
They live in rural Pennsylvania. No LLMDS there. They found a local doctor who tried to help. He ordered IV Rocephin for 3 months. She improved! Her strength steadily improved. Then, the Rocephin was stopped and she resumed the inexorable down hill slide. She was on oral Doxy and getting worse.
I examined her in her chair. I could not weigh her. She appeared moribund. She was unable to speak. I noted fasiculations in her arms. Her extremities were weak although she could move her arms some. The arms were loose with normal tone. Her legs were extremely stiff with lead pipe immobility. Her reflexes were normal. Sensation was hard to test.
ALS was high on the list of differential diagnoses. The textbooks list Lyme disease as a cause motor neuron disease- ALS; no one was paying any attention. why? If she got better with Rocephin why wasn't it continued? This seems like common sense. No?
Other diagnoses crossed my mind: Anxiety and stiffness.It could be an autoimmune disorder called Stiff Person's syndrome. Then I wondered if she had a primary muscle disorder. I ordered some tests and a consultation with a neurologists expert in muscle disorders. ALS was likely. But damn it- Lyme is known to cause it! And- she had started to respond to treatment; then the rug was yanked from under her.
The woman looked deathly ill. There was not much left to work with. I wished she had seen me or someone else a year ago.
I was afraid. I was afraid to treat her, but even more afraid to not treat her.
I ordered a PIC and Rocephin, with much trepidation, knowing that treatment can at times accelerate the progression of Lyme/ALS.
A profound wave of sadness came over me. I quietly shed a tear for this poor woman.
Then I became angry, as I considered the absurd politics of this disease.
But there were more patients to see; I went into the next exam room.