My Lyme Disease Nightmare

Lifewith Lyme

by Megan O’Rourke

The Atlantic, September 2019  

                                                

This is a sobering and thorough introduction to the subject of chronic Lyme disease, something physicians see with regularity in New England. This article is a sobering look at a patient who may have chronic Lyme. In her own words, “I was a patient of relative privilege who had access to excellent medical care. Even so, I felt terrifyingly alone.”  

“The medical establishment remains entrenched in a struggle over who can be said to have Lyme disease and whether it can become chronic – and if so why.”  It’s the Infectious Disease Specialty of America (ISDA) versus the International Lyme and Associated Diseases Society (ILADS).

The author found a “Lyme literate doctor” in Richard Horowitz* from Upstate New York. His treatment appeared to have helped her. She notes that “crucial questions about the cause of ongoing symptoms remain unanswered due in part to the decades-long standoff over whether and how the disease can become chronic.”

She quotes infectious disease specialist, Ramzi Asfour, an infectious disease specialist ant member of the IDSA, “Anyone who says they really understand the pathophysiology of what’s going on is oversimplifying to some degree“.

O”Rorque concludes, “I can’t say for sure that I have Lyme disease. But to imagine that I might never have found the treatment that has saved my life in every sense  -- restoring its joy – terrifies me. Not only did I suffer from a disease, but I suffered at the hands of a medical establishment that discredited my testimony end  – and simply because of my search for answers and my own lived experience – wrote me off as a loon.

* Dr. Horowitz’s office is cash only.  His website states “The office does not currently accept any form of insurance.”  Thus be prepared to spend a lot of money.