The Unfolding Drama
by Stephen J. Nostrom R.N.
Founder/Director Lyme Borrelia Out-Reach Foundation, circa 1987

It seemed as though "everything" was coming up roses!  I had just celebrated my 40th birthday. Christian, our son, had been accepted by two universities that he had prayed to be considered for as a student in criminal justice. Pam, my wife, was secure in her position as charge nurse at a local hospital, her expertise being in psychiatry.

The business I had started nearly three years previous was beginning to show promise. I was now able to handle nearly 80% of my calls  via the phone and no longer driving twelve to fifteen hundred miles a week . It was nice to be home more often, eating home cooked meals and work on the house and property as well as hiking down to the Long Island Sound to do a little surf fishing in the evenings.

I was semi-retired! An ad in the local paper caught my eye. The Shoreham Nuclear Power Station was looking for security guards. This was a para-military unit. One day, I stopped by attempting to sell them a printing job. Before I left, I also filled out an application for the position. 

Some months would pass by before I received a letter that would turn my life upside down - I had been accepted for the position! I thought to myself that the extra money would help with Christians University tuition, and, after all, I had worked two jobs most of my life anyway. I could still run my business, especially  with the shift work I would be doing.

There were many weeks of training. On my third day of actual security work, I had been assigned to the western sector. This was an area of heavily wooded terrain and swamps, and deer were a common sight - herds of them!  Upon returning home that evening, as I showered I noticed a small blood blister on the inside of my left ankle. "Darn new boots", I said to my self, "Must have pinched my ankle." 

It was like being back in the military once again. I was excited upon awakening the following morning, as I had four days off. Chris and I were going camping, as we did each year, on our 19-foot boat, visiting various islands in the bay and miles of open beaches.

The blood blister had grown, and I pricked it with a needle. It moved!  There was some sort of bug in there, so I dug it out. I had done the "wrong thing"! I knew of ticks, but I had never seen anything like this before. I thought nothing more of it. Big mistake!

We were off for four days, just Chris and I!  However, our trip was cut short as the rains came. A hurricane was fast approaching, so we headed immediately for home. 

I began to feel ill. Serious stomach flu! Pam had always said I was full of it , but this was not funny, I was sick. As the weeks turned into months, I began to present with all sorts of strange problems and symptoms - joint pain, head aches, a non-productive cough that would not quit. All the typical presentations most of us have experienced. After some dozen or more doctors later, and as many different diagnosis, I began my own research.

I woke up one morning and I could not walk!  Some weeks later I could no longer speak - my vocal chords were paralyzed.  My heart was doing flip-flops, and my vision and hearing were also affected. I was becoming frightened. 

In a local newspaper, there was an article on Lyme disease. My goodness, I had every symptom, other than increased ovarian pain during mense. After a near fist fight with a doctor with credentials up the kazoo, he finally agreed to perform a Lyme test. Some weeks later, I received a call from Stony Brook Hospital. My titer was the highest they had ever seen. I was now put on antibiotics, and began to feel better.

My personal research did not stop here. I wondered if others were suffering? What were they doing? How many of them were there? How were they being treated, as well as progressing?

Since I could no longer speak, and the only finger that worked  was the pinkie on my left hand (I am right handed), I pondered what I could do  to get answers to these and other perplexing questions. My health was getting worse. I wondered if I would ever see Christian graduate from high school. I came close to death on two occasions.

In 1987, being in an active Christian ministry for nearly twenty-five years, I asked God, How do you expect me to "preach" when I can no longer speak?" He said in His own way, "You have a typewriter, type!" "Hmm," I said, "but I only have one finger!"  "Type! Type! Type!" "Okay, I get the message," I replied. In the first sentence of that first letter, the letter *I* broke off my typing wheel. I began to cry like a baby, but no sound came out. "What are you trying to show me, Lord?" I asked.

It was the most humble letter I had ever written. I penciled in all the *I's*, and mailed it to three people. Ann Landers contacted me shortly thereafter, saying she would print my letter - and she did! An Out-Reach was born!

While Ann did not list my name, she did list my initials and the town I resided in -Mattituck, New York, USA! People began contacting me from all over the world via phone, calling their local telephone operators and seeking area codes, etc. These same people randomly began calling people in my little hamlet of Mattituck explaining that there was a man who's initials were SJN who had Lyme disease. The local newspapers had run some stories about my illness, so most people locally knew who I was and directed their calls to me. I was amazed as to how many were suffering. There were not thousands, but hundreds of thousands throughout the world.

I began speaking on various radio programs each month about Lyme. My voice was not strong, but I could now speak. I needed to reach more people,  so I went to our local cable television company. I knew people there, as I had years prior assisted with production of a show and helped out with camera work.

I said I wanted to do a program on Lyme disease. They said, "Okay! You can do a couple of shows each year."  I said "No! I want to do a live, monthly show one hour long, and I want that show reshown at least twice each week!"  I shared that I would provide the necessary medical people - at least give me a chance! They agreed! That was nearly eight years ago, and the show is still running. It is picked up in other parts of the country and world, as we have received calls from around the globe.

The past near twelve years have been a mixed blessing of sorts. Lyme taught me much.  As a Christian minister, I had a personal relationship with Christ, Jesus, but I had to learn Lordship, and Lyme taught me this valuable lesson. I learned that the *I* that broke off my typing wheel was not I, Stephen, but, I, Your God, who is with you always! I am in control, trust Me always!

Since Lyme Borrelia Out-Reach Foundation, Inc., was begun in 1987, I have been afforded many blessings! I was allowed to lecture in Europe four years ago and in Australia nearly two years ago. I have interviewed some ten thousand Lyme patients and returned to university myself several years ago to obtain my degree in nursing, and to work with Lyme patients seven days a week as an infusion therapy nurse.

We have three phone lines coming into the organization - an office at the Human Resource Center here in Mattituck, and attempt as best as we can to "run the good race" set before us. It has not been easy, but it has been rewarding! We are in debt up to our you-know-what, and a fund raiser is in progress as I write this, "Count Down June1999"

In closing, I believe all too many are at risk for Borrelia a.k.a. Lyme disease. I am personally seeing in my own small practice the emergence of coinfections, such as babesiosis and ehrlichiosis, at an alarming rate! I have twelve patients with coinfections that I am presently caring for this month alone.

We have reached over 125 million people worldwide, providing information on a shoe string budget, and no one has ever been refused information. I cannot not return a phone call or letter seeking help. It is not in my nature. So, dear friends, if there is a will there is a way! I have the will to continue with this work. The way to do it is with funding! Twelve years is a long time, and as corny as it may sound, I have dedicated the rest of my life to work with Lyme patients. God bless all of you. Don't give up! Like in the old hymn, it only takes a spark to get a fire glowing. I desire to light barn fires, but I cannot do it alone. Wish me luck, and keep us in your daily prayers!

Epilogue: My story is no different than many of yours. Many of you have contacted this out-reach over the years.Some of you have actually been guests in our home while seeking medical attention. No one has ever been charged for our services. The sad news is that we will be closing our doors in June of 1999 if we do not find funding to keep them open. Please help if you can.

Donations may be sent to the Lyme Borrelia Out-Reach Foundation, Inc., PO Box 496, Mattituck, New York 11952. A list of video tapes of various TV interviews Steve has done is available which can be purchased through the address listed.

For more information on Lyme disease see: Lots Of Links On Lyme Disease

Last updated on 29 December 2000 by
Art Doherty
Lompoc, California
doherty@utech.net

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