A mother's journey to diagnose and treat her daughter's Lyme disease reflects on failings in the medical system, and how Lyme disease awareness, and appropriate care can make all the difference.
The NP in the emergency room had his mind made up before he ever saw her; this would not be a case of Kawasaki disease.
He had the notes from the Prompt Care practitioner who’d sent us straight to the ER when she suspected Kawasaki disease, but the NP in the ER was disdainful. Perhaps he was in a hurry to get home to his supper. For whatever reason, he seemed unwilling to be bothered with a difficult diagnosis that day. As he entered the room – before examining Karissa and almost before he’d even glanced in her direction, he adamantly declared, “It’s not Kawasaki!”
He diagnosed her with constipation and sent us home.
Perhaps it wasn’t Kawasaki that brought us to the ER that cold winter day in early 2020. But it certainly wasn’t a simple case of constipation, either. Karissa’s fragile seven-year-old body battled a rash, fever, one-sided lymph node swelling, inflammation, and a sudden onset of profound fatigue. After months of illness, her health mended a bit before faltering again at the age of eight; this time, she hovered near death.
She was admitted to a world-renowned hospital and surrounded by teams of the most competent doctors available, but no one knew what was wrong. IV fluids and a feeding tube kept her alive.
Her body began shutting down; she slept 22 hours a day.
She was making no progress towards recovery through conventional Western medicine; in desperation, we traveled a thousand miles from home to seek alternative healthcare.
It was there the miracles arrived – one happy surprise after another! She could eat! She could talk! She could walk! She no longer slept 22 hours a day! The pain that had plagued her for months disappeared!
Every victory was cause for heartfelt celebration; our daughter was back, safe and sound! We wanted to spill the joyful news to the whole world!
After nine months of intravenous glutathione and occasional boosts of intravenous vitamins, minerals, and amino acids, Karissa’s body finally produced enough antibodies to give up the secret it had harbored for so long: Lyme disease.
We never saw a tick on her, nor did she ever display a bull’s-eye rash.
Many standard Lyme tests are looking for Lyme antibodies, not the presence of Lyme itself. As her body fought for its life, her immune function was too low to test positive for the disease that threatened to destroy her.
Karissa suffered deeply for many months before she was finally diagnosed and treated for the disease that nearly took her life. We live in an advanced medical age; it seems truly tragic that with all the resources and knowledge available today, we still lack suitable tests and treatment options for suffering Lyme patients. 
Unfortunately, the cavalier NP in the emergency room was not the only negligent healthcare provider Karissa endured throughout her arduously painful Lyme journey. Two of the doctors responsible for her care at the world-renowned hospital refused to give her IV fluids, preferring to believe her problem was psychological. By the time another doctor came to her rescue, Karissa had lost 25% of her fragile body’s weight in twelve days’ time; her labs were dangerously off balance due to severe dehydration, and her heartbeat had lapsed into arrhythmia.
The stories of neglected and suffering Lyme patients are stories that need to be told; on the foundation of awareness, progress can be made. Together, we can make a difference for the Lyme patients of tomorrow: a medical community equipped to tackle Lyme disease with compassion and appropriate treatment strategies.
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The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
