“Lyme was never on the radar”

“Lyme was never on the radar”

I chased a twelve year unresolved fatigue when the Lahey Clinic diagnosed Chronic Fatigue Syndrome after a severe bout of the summer flu landed me in their emergency room. It was the worst flu I had ever experienced, hence the ER visit.

I ended up bedridden on oxygen in the fall of 2008 and nearly died. It has been almost seven years now trying to regain my health and I am left with refractory Lyme arthritis in the shoulders and hips, lymphadenopathy and reactivated/chronic Epstein Barr while recently treated for early prostate cancer (brachytherapy). I have daily bouts of exhaustion requiring a two hour nap. It is unclear if I will be able to return to work.

At the height of my twenty five year career in High Tech sales I was forgetting the names of my coworkers and many times couldn’t recall where I was on the commute home. I was being evaluated for early Alzheimer’s disease. I lost verbal fluency and of course my self confidence which affected job performance. I obtained a private pilot’s license that I could not keep current.

During that twelve year period of unexplained fatigue I was never screened for Lyme disease while ping-ponged through the medical community. We live in a Lyme endemic region with one of the highest rates of Lyme in the country yet Lyme was never on the radar.

My entire family was diagnosed with Lyme after all of us had a prolonged exposure to infection before diagnosis and initial treatment so we missed the extremely narrow window of opportunity for successful short term treatment. There are no treatment guidelines for the advanced stage of Lyme when it has gone years or decades before diagnosis and it is this class of patient who has been deceitfully ignored because the focus has always been with the acute stage of disease as my activism efforts have been pointing out over the past six years.

Thirty plus years of colossal complaints all across America (And now the globe) yet nothing has changed while the numbers of hideously disabled patients continue to grow unabated due to faulty/misleading antibody tests and a medical community practicing willful ignorance misguided by the CDC and Infectious Diseases Society of America along with the American Lyme Disease Foundation all hell bent on denying the late stage Lyme epidemic which is ostentatious collusion and grandiose in scale.