One thing there is plenty of room for in this world is another Lyme story! My guess is that as time marches on there are going to be a lot more stories to come. Much like all the rest of us seemingly whiney bunch, I will start from the beginning.
It was autumn, November of 2009. I was going to go on my first deer hunt with my father since I was a teenager; I am now fifty-five years old and managed to stay away from the big hunt for many years. I can remember as a kid never being all that enamored with the idea of blasting away at some poor living creature that roamed about merely looking to feed itself, but I’m sure I’m not the only son in history that followed his dad faithfully into the woods like a good hunting dog. I must admit however, I did like the whole hunting wardrobe thing and toting a gun around; it seemed like a big deal at the time.
There we were, my sister, her two children and my father surveying my sister's farm, or scouting the woodlands for signs of deer for the upcoming hunt. My nieces, not unlike the deer themselves, pranced through the woods like gazelle, flying over rocks and felled trees. I can remember just wanting to get back to the house and have a cold beer! Finally after an hour or so of this, we pinpointed our spots to wait for the elusive deer, and back to the house we headed.
With the very welcoming house in sight and still some daylight, I was close enough to my father to notice a little speck of something on his jacket; in fact as I got closer I noticed several specks. Much to my dismay, upon a more detailed evaluation, these specks had little legs and were moving! Ticks! Many ticks were clinging on for a nice warm meal. Still more disturbing was the fact that I too had been transporting these horrid little creatures back to humanity and our dwellings.
We brushed ourselves and each other off feverishly, although my sister and her two very woodland-like children thought almost nothing of the whole affair. I on the other hand couldn’t have been more aghast if I were lowered into a pit of live rats! I’ve never been a big fan of any creature that has the ability to stick you like a dirty syringe and suck out your life’s blood, and in return--and depending on the little bastard's prior host--leave you with all kinds of little parasitic wonders to wreak havoc on your body!
Having made it to the warmth of my sister’s house and that long awaited cold beer, suddenly it was all a moment of nervous laughter and a story for the grandchildren! By the way, the nervous laughter was accompanied now and then by a quick visual survey of my body with an occasional feeling about of my scalp. Now that the deer-scouting excursion was over, it was back to Brooklyn, NY where I live, for a nice hot shower!
To this day, almost three years later I will never forget being blanketed by the warmth of the shower and comforted by the thought that I did indeed leave those horrid little creatures back in Pennsylvania. Yes! I was thinking about them still! As I washed my body, my hand struck a foreign object on the back of my left arm. Now at 55 years of age and having had many showers, I am fairly familiar with my own body. This was something very new I was feeling. Whatever it was, it wasn’t budging--a mole perhaps that I had never felt before? Do moles pop up overnight? I don’t think so!
Staring back at me in the mirror was a very small black dot, but what really caught my eye was the very red, very large rash surrounding the black dot. With his head buried deep in my arm like an ostrich with its head in the sand, he, or she, was having a smorgasbord and slurping away at my life’s blood! This was going to end very quickly! I looked for and found the tweezers, got as close to his little head as I could, and very gingerly squeezed the tweezers against the sides of his head and gently pulled. His little legs writhed as if to say, "I’m not done yet!" There he was, at the tip of the tweezers and at my mercy. Like a little kid with all the meanness I could muster, I squeezed with vise-like pressure in hopes that his last thoughts might be “I hopped on the wrong guy!”
Upon giving him a burial at sea--in the toilet--I called my doctor who without examination called in to the pharmacy and requested a prescription of oral Doxycycline @ 100mg twice a day. I took this for the next twenty days.
Fast forward to January 2010, with the Flu season still annoying some, I began to come down with what I thought was just that. Two or three weeks later as these symptoms persisted, I went back to my doctor, who gave me a checkup and decided that indeed it was a lingering flu and that we would have to ride it out!
Spring had passed but my “flu” hadn’t! And in fact the symptoms we’re not only getting worse, but new ones were finding their way into the mix. Aside from the usual chills, sweating, and nausea, I was getting leg cramps with head, neck, and chest pain that would seemingly move about my mid section, and right shoulder pain. Something very weird was going on inside my body.
Among the many specialists, I was seeing an eye, ear, nose, and throat doctor for what now had become severe head and neck pain. A cat scan was ordered. I was called and told that all looked normal, but I was far from convinced. About a week later I was once again called by this same doctor and told that something had been missed, and that I had a sinus infection. I was put on a week of antibiotics. Now here is where it gets fun! I got a third call by this same doctor's office and was told that once again there had been a misreading of the films, and that I had an ominous-sounding something called “elevated brain swelling.” Without any explanation I was referred to a neurologist. I didn’t know what any of this meant, or how bad it might be, but I was happy to have something in the way of a real diagnosis which might explain what I was going through!
Did you ever walk into an office and meet someone and know immediately that you were not going to like this person? Enter my new neurologist! She should have been sitting in a meat locker, as her personality was like ice. As she spoke to me in what sounded like a very thick eastern European accent, I was convinced that she had a torture room behind a hidden panel in her office. She proceeded to inspect me without my saying much of anything other than to answer yes or no; she was not one for elaboration! She did manage to ask me what I was there for. I told her I was there for severe head and neck pain with the possible diagnosis of elevated brain swelling. Upon her physical checkup, she looked at me and said exactly what I did not want to hear. "You’re fine!" She said that upon her review of the previous MRI all was well, and she gave me a prescription for Cymbalta and sent me on my way with my tail between my legs.
Not long after, the pain got unbearable in the upper neck region, and I reluctantly went back to the original eye, ear, nose, and throat doctor who misdiagnosed me twice, or at least once. He called the emergency room without haste and arranged for a lumbar spinal tap for possible meningitis. I also told them that in addition to the head and neck pain with the flu-like conditions that endured, I was developing a whistle or hiss-like noise in my ears, or more specifically a sound that resembled a sea shell that was placed on my ear and sounded like the distant ocean. I later came to know this sound as tinnitus.
They wheeled me into a room that was quarantined and was bustling with doctors and nurses all wearing masks. I felt like I had leprosy! They began by putting a line in my arm and intravenously started a bag of Vancomycin and Ceftriaxone in the event that I did have meningitis. If you have never had a spinal tap--I have had five of them--I would hold off as long as you can on this one. I didn’t enjoy the first, and they only got worse with time and anticipation.
As fate or luck would have it, I did not have meningitis, although I would have been happy to have a diagnosis so I could be treated and hopefully get back to life! Once again, off I went to continue my quest and to find what ailed me. If ever I believed in miracles, it was a day or two after my spinal tap; I miraculously was lifted of all symptoms, every last one of them! I’m not, nor have I ever been, much of a religious person. Three years of Catholic school and rulers on my knuckles may have had something to do with that. But the day I noticed my agony had disappeared, I did say a “thank you God." Maybe two of them. I enjoyed the rest of the summer not even thinking back on what had seemed an eternity of darkness, and pain--I was cured!
Oct. 9th was a Saturday, and of all places I could have been enjoying myself, I was at work. But as I’ve always told my kids, “you do what you gotta do.” I remember sitting in my office and eating breakfast while working, and while sipping on my coffee I began to get a bit of discomfort in my left lower abdomen. I didn’t give it all that much more thought, but as the day wore on, not only did the pain intensify, it moved up into my right mid section. What now? As the day wore on, this pain began to branch out throughout my body; I started to get leg cramps, pain in my right shoulder, chest pain, and at some point the head and neck pain were back to remind me what I had been so happily missing. I was right back where I was in the beginning of the summer!
Within a short period of time, I was running on the hamster wheel again, in and out of doctor’s offices and hospitals, chasing the seemingly unidentifiable and very elusive whatever it was that plagued me!
Among the many new doctors I had encountered, given the multiple symptoms and more specifically the chest pain, I was referred to a well known cardiologist and surgeon who among many things preformed Cardiac catheterization. Because of the intense chest pain I had a little plumbing work done to take a closer look at my heart. I of course couldn’t have expected anything else regarding the results other than the one word I was becoming all too familiar with--normal! This seemingly endless and uneventful chase was getting really old, not to mention embarrassing. I began to think like some of these doctors of one disease, hypochondriac. In my mind or not, I continued to physically get more and more sick!
I can’t remember which came first, the walking of my dog and forgetting what I was doing, or the running over to Target for a purchase. As stood there with all these red jerseys running about, I couldn’t figure out where I was or what I was doing there. This was not only a new symptom, this was the beginning of a living hell. This is something that in my wildest dreams I could have never conjured up. Speaking of dreams, even they were altered to the point of trying in a dead sleep to scream out for help! This was all going somewhere that was a very dark and scary place.
As the headaches, body pain, and tinnitus continued to spiral me downward with all the neurological symptoms, I was referred to another eye, ear, nose, and throat specialist for the worsening ear sound and pain. She was a God-send, very smart, very approachable and kind. After many visits and hearing tests it was found that I had lost some hearing in my left ear, but because of the often severe head and neck pain and general decline of health, she referred me to yet another ENT. She told me that there was nothing she could do for the tinnitus.
Looking back, I suspect she had her suspicions as to a diagnosis, which she kept to herself as this was not her specialty. She told me that the other doctor she wanted me to see was wonderful and was able to do “something” with the neck that helped many? “My neck?” I wasn’t convinced that whatever he might be able to do to by manipulating my neck in the way of adjustments or otherwise would do much for all that I was experiencing. But at this point I would try anything! I made an appointment to go and see what could have been my 25th doctor.
His office was very feng shui and had a warm tone to it, from the tea offerings in the waiting area to the receptionist who was pleasant and inviting--a soothing entrance for anyone feeling under the weather. The doctor came out to greet me; he was soft-spoken and seemed, when I shook his hand, a gentle soul. We walked back to his office, and my tale of illness began to flow as if a dam were opened up. He listened carefully and with compassion. Aside from my merely telling him about my many ailments, he could see that I was a very sick person. He asked me the one question that had eluded all others for so long, “Do you ever remember being bitten by a tick?” My mind and memory, although not serving me too well, raced back to the reflection in the bathroom mirror of the little black dot with the big red circle on the back of my arm. "Yes!" I said. "It was November of 2009!”
Why did it take upwards of twenty-something doctors, including hospital visits and stays, to even pose this seemingly simple question? Even my own doctor who administered the Doxycycline for the bite never once mentioned Lyme disease. Why--when I was admitted to the emergency room and administered two very large bags of antibiotics for possible meningitis--did I miraculously shed all my symptoms for the summer of 2010? Why was this one disease so out of the realm of possibility, especially given the fact that--unlike many--I had the tick and the rash?
Having gone so long without a diagnosis--although some poor souls have gone longer--the Lyme disease had found a nice warm cozy place to thrive and do what it does best, destroy body and soul, and life!
Since seeing this one doctor who posed one of the more important questions in my life regarding Lyme disease, my health had further declined, so I was once again referred to another doctor, an infectious disease specialist. Unlike many doctors and their knowledge--or lack of it--of Lyme disease, I was lucky enough to walk into the one office in the city of someone that not only understood the disease, but was willing to go the distance in terms of long-term treatment.
Although I cannot say enough about this one doctor, I did pull off the ramp for a bit and explored others out of frustration. While in treatment with him, I developed a blood clot from the PICC line that was feeding me the much needed antibiotic Ceftriaxone, and had two more hospital stays, one of which was from elevated spinal fluid causing head pain that brought tears. Obviously none of this had anything to do with him regarding his treatment, but the one thing in life I was not given is patience. All I can say about my exit and exploration is that there are those who will find opportunity, and the Lyme community presents itself with an endless pool of those of us who will do and pay anything to seek help. The opportunists who await their prey will devour their savings, their emotions, and more sadly, their hope.
This has been a journey that I--or anyone with Lyme disease--had not planned on. But the one thing I certainly never planned on was the lack of help or knowledge in the medical community. For the most part there are a lot of awfully good people out there serving the medical community, but something is very wrong in the research and lack of funding and treatment, as there are so many opinions with no seemingly right one! Much work needs to be done.
David Skidmore, New York