|left side bells palsy and eyelid droop, both markers of Chronic Lyme|
--(To hear more of my story, listen to my new episode on the Dirtbag Diaries Podcast) --
When the doctor at the urgent clinic in New Hampshire told me that nobody down South would be able to help me, she was more than just bizarre and callously dismissive. She was completely wrong.
A few days after returning to Asheville after thanksgiving, I found myself under the care of a Lyme Literate PA who works under Dr. Jemsek- 'Dr. J' as he's known in the Lyme community.
Perhaps the world's greatest expert on the treatment of chronic Lyme, Jemsek's story is the focus of the documentary "Under Our Skin." He began treating critically ill chronic lyme patients with intravenous, high dose, long term antibiotics, and these patients who had been offered no hope from decade's worth of doctor, dismissals, misdiagnoses and drugs....were starting to recover. Many of them completely.
The insurance agencies, however, were not keen on expensive, long term antibiotics being doled out to every chronic lyme patient out there. For treating these patients in a manner that was considered outside of normal protocol (although there is no medically accepted or effective protocol for Chronic Lyme) Jemsek lost his medical license for one year.
The patients who had finally found the answer, the doctor, and potentially the cure, had to go without help or treatment for a year as their health continued to deteriorate.
Jemsek is now back in practice, running the Jemsek Specialty Clinic in Washington DC. He continues to treat the most severe cases of Chronic Lyme in the world.
There are only a small handful of medical practitioners that work below this renowned physician, and one of them lives in Asheville, NC and was able to see me three days after I had a positive ELISA test, and then a Western Blot that showed multiple markers of Borrelia Burgdorferi.
I wish to tell that urgent care doctor how wrong she was.
Somebody 'down here' is helping me.
I wish to tell her that next time she comes across a woman sitting on the butcher-paper lined exam table, a woman covered head to toe in livid red spots who can barely use her legs and is begging for help, she might consider saying something other than, "you need deep psychological counseling."
I wish to explain to her that the symptom I was presenting with, an overwhelming experience of being sucked down to the ground as if by centrifuge, one that made walking impossible and lying down a nauseating, stomach-dropping experience is not 'anxiety' at all but a symptom known as mal de debarquement. MDD is a hallmark symptom of late stage, Neuroborreliosis.
Most of all, I wish to tell her exactly what it was that her ignorance cost my husband and I, because it is brutal, and impossibly sad, and we will never fully recover from it.
----please share my this story. The culture of ignorance over the growing pandemic of Lyme Disease is leading to despair, suicide, bankruptcy and suffering for patients and their families---