I suppose there’s a little subconscious covert operation at work, publishing this Sketchbook Project spread on a Saturday, when almost no one is looking at blogs and Facebook pages.
But here it is, getting close to the last post, and really the most depressing. I have no data at all to support my observations, because we just don’t know. I see
bloggers and Lyme activists and newspaper stories about patients giving up and taking their own lives, or dying of various complications. There are some attempts to discover the causes of death of people with Lyme, but I understand that “Lyme Disease” is rarely listed as cause of death in the official papers, so those data points are lost.
Instead we get mitral valve failure, suicide, Alzheimers and other forms of dementia, meningitis, encephalopathy — almost any neurological disease — pulmonary failure, and all of the differential (mis-) diagnoses that were really Lyme — Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease), Parkinson’s Disease, Lupus and other autoimmune diseases, including various rheumatic arthropathies.
This list is a tip of the causes of death that will be put on death certificates, and entered into data about causes of death of these various diseases, but it is very rare that Lyme Disease is included in any of these Cause of Death descriptions. That’s why we hear that Lyme is “rarely fatal.”
It is fatal. Absolutely it is. Either because people stop living real lives and decide to take their own rather than stay in a painful limbo, with no hope of a cure, pursuing treatments that will drain their family’s finances, or because their illness progresses to death.