My Lyme Story: Chapter 2

Unbeknownst to me his patient load was immense and he had begun to burn out. I was told that whenever a doctor is willing to treat people suffering from tick-borne diseases patients "flood in like fleas". This had apparently occured at his tiny office. One doctor and a few staff were trying to help 700 patients! His workload led his quality of care to drop so I didn't go back.

He also failed to inform me that a die-off reaction occurs during treatment. Mine was severe and sent me to the ER twice with stroke-like symptoms. Instead of helping me they sent me home, telling me the first time I was too complicated to deal with and the second time to "Go eat grandma's chicken soup!" and was interrogated for info about my Lyme doctor. I declined to give any. To this day we aren't really sure if what I had those two nights were mini-strokes, severe die-off or both. What we do know is that what I experienced was medical neglect. 

My symptoms by hospital protocol usually prompts blood tests and a CAT-SCAN. My husband went in three years later and was treated like royalty, including being hooked up to a heart monitor, blood tests and a head scan for a severe migraine. I went into the ER with a droopy face and locked muscles, was told to wait, brought in, made fun of and told to leave. That hospital is now gone, due to going bust financially. Unfortunately such treatment by medical establishments toward tick-borne disease patients is quite common.

Following that disaster and emboldened by such a lack of humanity I turned to Lyme community. In my journey toward a diagnosis I had conversations with many people also suffering from tick-borne illness and found them extremely intelligent, understanding and supportive. I hadn't yet experienced such a sense of community. This set the fire of inspiration and led to me becoming a patient advocate and activist. Towards the end of 2010 I began a national letter writing campaign with a fellow activist. We called our project "Letters for Lyme" and it turned out to be quite successful. Hundreds of people participated.

It was during this time my illness finally came to a tipping point. On February 17th, 2011 I had to be rushed to the hospital. I had been severely ill for a few months, was sleepng constantly and extremely pale. The situation was very uncomfortable and tension was resonant in the air. "Do you have any existing health conditions?" fell out of the nurses mouth, I cringed and my husband shot me an irritated look.

"I have Lyme disease." I said with hesitation. "You mean you had Lyme, right? You don't have it now." she responded, as if all Lyme cases live in a state of non-existence. She didn't seem to be able fathom that someone could actually have an active Lyme infection. This assumption was made without any deeper discussion, examination or lab tests.

I ended being diagnosed with severe anemia caused by internal bleeding and was admitted to the hospital. I spent the next five days in trapped in bed with the possibility of a blood tranfusion hanging over my head. The bleeding was blamed on IBS with no definitive cause. The amount of ignorance and denial evident in hospital staff was sickening. I saw that to these medical professionals "Lyme" was treated like a curse word, spoken in hushed tones and referenced with disdain.

That experience would linger like a ghost for another two years before tne perfect moment to strike came again.

Meanwhile I had come to realize that there was a need for more than just national campaigns and online activism. Locally there was no structured educational support network for people suffering from tick borne illness. I also met another person with for the first time ever during this time of explosive revelation. I was no longer the only one. It was an incredibly validating experience and they remain a dear friend of mine.

Following this meeting I started the Lyme Alliance of the Berkshires. 

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