Two years ago a 32 year old female was admitted to the hospital for atypical pneumonia- pulmonary infiltrates and a high fever. Her illness was preceded by a rash on her legs, fever, cough and severe diffuse joint pains. In the hospital she was treated with two weeks of IV Rocephin and Zithromax, to "cover" her for various causes of pneumonia. When I saw her in the office for a follow up visit I noted a significant circular red rash on both lower limbs. Labs at that time showed an elevated CRP of 12, a borderline ANA antibody and a single 41 IgG WB Lyme band out of the standard 13 bands. I continued oral antibiotics. The rash improved within a couple of weeks. She complained only of fatigue and nausea. The physicians who saw her initially could not explain her findings. It was suggested that she had an autoimmune disease. The rash was biopsied. The findings were: non-specific lymphocytic dermatitis. She continued antibiotics for several months and generally did well. Additional symptoms included: persistent fatigue, strange visual changes and bouts of numbness and tingling. She developed right upper quadrant abdominal pain, suggesting gall bladder disease; this improved without intervention. After 6 months of antibiotics, she stopped them without consulting with me. I saw her about 2 months later. She had been hospitalized again. She had experienced acute weakness of her extremities and a loss of sensation in both legs. She also experienced transient double vision. The neurologists who evaluated her listed various differential causes: MS, stroke, Guillain-Barre syndrome and vasculitis. Her work up was negative. She was sent home without a diagnosis. In the medical history provided by the neurologist,"Lyme disease" was mentioned parenthetically. The verbiage in the consultation notes essentially mocked the diagnosis, treatment and physician.
Repeat lab testing showed that a C6 peptide antibody test sero-converted from 0.29 to 1.2. This information was not considered relevant.
The patient improved and her symptoms were stable when she came to see me after this adventure in the local hospital.
I explained to the patient that I felt her symptoms and findings were consistent with chronic Lyme infection. My exam revealed numerous neurological abnormalities- not noted by the neurologists. I don't think she fully believed me. She works in a doctor's office and was hearing many conflicting points of view. Despite this, she continued antibiotics for an additional 4 months.
Two months after stopping antibiotics (again!) she came into my office. She had marked numbness and weakness of the left side, upper and lower extremity. She had nearly absent pinprick and vibratory sensations of both legs. This time she was really sick. Her presentation was typical of MS or an acute stroke. I thought it was all Lyme related. She decided to follow my recommendations. An MRI of brain and spine were normal. She was immediately started on IV Rocephin along with a short course of IV steroids.
She experienced a brief episode of confusion. Within 4 days the weakness was improving. Withing a month she was 80% better. Within 8 weeks she was almost normal.
She has stayed on antibiotics and done well since this episode. She continues to have only minor symptoms. Her markers of inflammation have improved. Her CRP is less than one. Her ANA is negative. She continues to have abnormal physical findings which are slowly improving. Needless to say, she is no longer anxious to stop antibiotics. I think she agrees with my approach and has become a reader of this blog.
She came to me by accident. I was/am her primary care physician. I can imagine how things might have turned out if she had been treated by standard paradigms. Her primary care physician would have said: "I don't know what it is." A rheumatologist would have diagnosed a non-specific autoimmune disorder and treated her with immune modulating therapy. A neurologist would have diagnosed an atypical form of MS and suggested other therapy. She might be disabled with paralysis on one side of her body. She would likely suffer with profound cognitive deficits and diffuse pains.
Perhaps fibromyalgia would be added to the list of symptoms. It seems unlikely that she would be working full time and taking care of her young child. But she is.
These other physicians who encountered my patient on this journey are unaware of her story. She was a consult, an undiagnosed case- lost to follow up. They are busy- seeing new patients and are not looking back.