My family’s Lyme story is part of the 2012 Congressional Record, thanks to Senator Richard Blumenthal’s (D-CT) request for testimony about Lyme disease. This is what I had to say:
What is most disturbing is not the raging, undiagnosed and untreated infection we all contracted, that forever changed our lives, brought us to financial ruin and caused untold misery, is rather the way doctors treated my family.
Our many doctors (pediatricians, primary care and specialists), over a twelve-year period while we sought a diagnosis and finally treatment, were unbelievably ignorant, obnoxious, belittling, arrogant, rude, demeaning, impatient and cruel. They repeatedly laughed at us, sadistically told us we were crazy, claimed we exaggerated symptoms and said we could not understand the medical literature about Lyme. They exhibited a total disregard of human life by ignoring reported symptoms, not listening, disregarding and neglecting reports from other physicians who were treating us and ignoring published medical literature when we presented it to them.
Doctors repeatedly humiliated and undermined us. They told me I was an unfit mother, in front of our young daughter. They recommended institutionalization as the only way to handle our previously healthy and smart child, who now was suddenly physically disabled, learning disabled and mentally ill. Even after successful antibiotic treatment, their attitude and approach did not soften. They remained uncooperative, ignorant and arrogant.
The biggest wrongs – the way doctors treat patients and today’s culture of medicine.