Angelo and Margarets' Story

It's The little "things" in life.

THE BULLET

They were cute little Beagle puppies. Rescued from someplace on Long Island, they were delivered to North Shore Animal League, and sent to my wife Margaret, who was in charge of the Foster care department. Just becoming the N.S.A.L. associate of the year in 1988, Margaret's future was bright and filled with many rewards. Caring for animals was what she had a talent for, and nursing them back to health was reward enough for her. The events that followed that year were the start of the downward spiral that would become a nightmare.

A parasite, no larger than this period [.], attached itself to a human host to feed. Margaret never saw the bullet that struck her life. It began with a rash near her left knee, symptoms similar to a common cold, headaches and mild edema (swelling) to both her legs. Normally healthy and full of energy, Margaret could barely recall the last time she felt good when she saw her gynecologist two months later. Her legs swollen and weak, she thought it might all be side affects from "the pill," but the gynecologist, suspecting something more insidious, advised her to see a neurologist immediately. Not wanting to "burden" me with her ailments, she put on a good front for me to see.

IT COULD BE WORSE!

The neurologist was well known, and considered one of the best in New York City. As a Paramedic, I would only have the "Best of the Best" for my Margaret. I recall the day when, with a grim tone, he told us that Margaret had Multiple Sclerosis, and that there was no cure. Margaret was doomed, but not the way we initially thought. The neurologist stated: "It could be worse." Little did we know at that time, his statement would be the only one he made that was correct. If "It could be worse," it can get worse!

BE CAREFUL OF WHAT YOU ASK FOR!

Margaret was, to say the least, in bad shape. She had chronic headaches, loss of sensation to her arms and legs, dizziness, visual acuity problems and something I never saw her have before - depression. She could no longer function at her job. She could not feel veins to start IV's on sick puppies and kittens, or perform proper examinations on them. I frantically learned all there was to know about MS, and what I learned depressed me as well. Multiple Sclerosis is an insidious demyelinating disease, with no known cause, and no known cure. I so much wanted it to be a disease other than Multiple Sclerosis. Like the old saying goes, be careful of what you ask for, you just might get it!

As fate would have it, Margaret was sick at home, feeling physically drained, and was an emotional mess. As she thumbed through the daily newspaper, she read a "tiny" article that, at the time, caught her one good eye. It was about Lyme disease. Showing me the article the moment I came home from work, we called for an emergency appointment with her neurologist before I had removed my jacket. The next day we advised the doctor that we should check for Lyme disease. He scoffed, and began to give a speech on how he was right, and we were wrong.

ONLY $35

With years of clinical and emergency medical experience, and being 100% Italian, I was just about to give the neurologist an offer he could not refuse. I never had the chance. Five months of pent up frustration inside Margaret fired across the desk and hit the doctor between the eyes. She demanded to be tested for Lyme disease-"NOW!" The neurologist looked at me for salvation, but I was busy grinning. When the doctor was given the opportunity to reply, he contritely asked Margaret to please roll up her sleeve, and told us the test was only $35.

IGNORANCE IS BLISS

It only took a couple of days for the ELISA test results to prove that Margaret did not have Multiple Sclerosis. She was admitted to the hospital, and was a curiosity to the medical staff. Because Margaret's arm was butchered the first day by a phlebotomist, who was afraid of drawing blood from a "LYME" patient, she only allowed me to start IV's or take blood work. I spent all of my time, on and off the job, by her side in the single bed isolation room. I would catch doctors from other departments, day and night, reading Margaret's chart and scratching their heads. The cavalry came in the form of the Infectious disease department.

Not the Infectious disease "doctor," but the whole department walked into Margaret's room. An aggressive regime of antibiotics was ordered, and other than a headache from a spinal tap, Margaret was symptom free and released in a week. She continued IV antibiotics at home for an additional week and felt great. After two weeks of antibiotics, Margaret and I both started the process of recovering financially, physically, and emotionally. Assured that Margaret was cured of a yet little recognized and studied disease, her doctors told us to come back in six months. It is true that ignorance is bliss.

MY TURN

Margaret's health did not make it to the sixth month, and she had a severe relapse in only five. Because the Borrelia burgdorferi spirochete reproduction time is so remarkably slow, and it is an intracellular invader (attacks and hides inside cells), a treatment regimen of antibiotics that will infiltrate into the cells, and cross the blood brain barrier is required for months. Hind sight is 20/20. Because of hospital politics, the infectious disease doctor stated the Neurology department was taking over all suspected Lyme patients, and "they wanted their patient back." Margaret had no alternative but to see the same doctor who diagnosed her incorrectly with MS.

In the meantime, we looked for another doctor who knew of Lyme disease, with no success. It was obvious from the first visit that the neurologist had his own agenda. An experimental drug for Multiple Sclerosis patients just came out, and Margaret was to be the Lyme disease lab rabbit. I asked Margaret to wait out in the hall; it was my turn to talk to this doctor.

THE CHRONIC LYME DISEASE SHUFFLE

Contacting a newly formed group called the Lyme Disease Foundation, we were given the name of a doctor who was well versed in treating Lyme disease victims. The doctors name is Kenneth Liegner. Although the trip to Armonk, NY could be as long as two hours, it was worth it. Dr. Liegner is a compassionate and knowledgeable doctor. Unfortunately, because of the ignorance in the medical community, he is also inundated with Lyme disease patients.

It has been ten years since Margaret was found to be a victim of Lyme disease and also Lyme ignorance. The spirochete, still present in her, is dug in and refuses to succumb to years of constant antibiotic treatments. Always hoping that a new treatment would be the "magic bullet" to cure her, I waited for the medical community to do something regarding this terrible disease. Then I got tired of waiting. Margaret began what I call the chronic Lyme disease shuffle, and that is taking one step forward, and two steps back.

SORRY I'M LATE

Little did I know ten years ago that I would be president of a Lyme disease resource center in NYC, producing a television show to aid in the education of infectious diseases, and asking Karen Vanderhoof-Forschner, the founder of the Lyme Disease Foundation to be a guest on the show someday. To quote Karen Vanderhoof-Forschner: "I am so impressed when people move off their duff, and are busy educating and providing information to their community." She is correct, and I am angry at myself for sitting on my "duff," and not jumping into the fray sooner. Karen, if you read this, thanks for that great doctor referral ten years ago, and I'm sorry I am late.

Angelo & Margaret

Angel Wing Lyme Disease Resource Center-Queens, NY

The Lyme Disease Quilt Page

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