I first saw this patient 10 months ago. She had been ill with a disabling multi-system illness for 12 years.
She suffered with many symptoms, including but not limited to: profound fatigue global cognitive dysfunction, joint pains, swelling with effusions, weakness and numerous neurological manifestations. Lyme was suggested. She had a positive Western Blot (10 years ago) an IDSA doctor prescribed two weeks of doxycyline.
An LLMD subsequently prescribed over a year of antibiotics including mincycline and Ceftin. Many symptoms improved, except the over-powering fatigue.
She stumbled along for years off antibiotics, symptoms waxing an waning. Still, she managed to functioned as a high level executive.
As of late she was not doing well at all. When I met her she had been sidelined with disability for more than two years. She had no energy or stamina. She was unable to grocery shop or attend to the most basic activities of daily living. She had perpetual flu-like symptoms - a loss of sensation in her fingers and toes. She was stumbling and falling. Joint pain with swelling had returned. She had global cognitive dysfunction with episodes of syncope, confusion and disorientation. She could not speak well, think clearly or read and write. She was a shell of her former self.
Two months before an IDSA doctor refused to treat her because she had a negative Lyme test.
Despite the fact that she nearly died of complete heart block now treated with a permanent pacemaker. And - despite the fact the attending cardiologist suspected Lyme as the culprit.
I became her doctor.
After months of fits and starts with oral therapy she has no been on IV Rocephin for 3 months and tells me she is getting her life back. She is contemplating starting a new business after two years of complete disability.
Now she gets out of the house and can read. Now she can do many things unthinkable a few months before. She is still very sick with many persisting constitutional and neurological symptoms. Her stamina is poor. After brief activites she requires extensive rest for recuperation. But she tells me she getting better almost on a daily basis. Most of the improvement seen after 2 and 1/2 months of therapy.
Lets look at some labs. These are IgM Western Blot results from three different labs. Labcorp found a 23 band. Clongen reported a 41 band and a weak, 23% of control 23 band reaction. Stony Brook found: Bands, 18,37,58,66,72,93.
The 37 and 93 bands either one alone might be enough to make the diagnosis according to some sources. I do not know why there was no 41 or 23 band found. Different strains of Lyme may be used in different kits lending bias to which bands react.
I do not understand not treating heart block with a documented history of Lyme disease. The CDC test is a surveillance test. It has never been validated as a diagnostic test. And the notion that IgG bands show up in late Lyme is not substantiated in any literature I can find.
The highly vaunted NIH/IDSA studies of long-term therapy never included Rocephin use for longer than 10 weeks.