Posted on August 6, 2015
IN THE KINGDOM OF THE SICK, PART I
Today, a few weeks after I was able to see a Lyme disease specialist for the first time, thanks to the generous donations to my fundraising campaign on YouCaring.com--I sat in my specialist’s office and learned that I not only had late-stage Lyme disease (I was diagnosed in 2013) but the serious and difficult to treat co-infections Babesiosis and Bartonella.
I learned that these infections most likely contributed to the degenerative disc disease, arthritis, and nerve damage in my legs, back, and spine, the need for back surgery at the early age of 33, and the eventual failure of that first spinal fusion--and that my Lyme disease was now also endangering the success of my second back surgery.
I learned that I've had all of these infections since the age of 19; that they were the cause of the debilitating and chronic illness that followed me through my twenties into my thirties, an illness that has cost me friendships, romantic relationships, opportunities, jobs, and even my dream of going to medical school.
But I also knew that no doctor over the past 16 years of my struggle, despite my undeniable clinical symptoms--especially when her family members were exposed and infected, and taken together and appearing in such a young person who again had extensive exposure to deer ticks--thought to or agreed to treat me with a course of antibiotics simply because my test results for Lyme disease came back negative. To give you an idea, 30 to 50 percent of those infected with Lyme and other coinfections never test positive.. The many doctors I had seen, some of the best on the East Coast, had little to no accurate knowledge of Lyme disease and the other diseases ticks could transmit, nor how serious and even deadly they could be. In 2013, Joseph Elone, a 17-year old from Poughkeepsie, New York, died from an undiagnosed case of Lyme Disease in a little over two weeks after the infection spread to his heart. He is certainly not the first to die from Lyme Disease.
There were times I begged for antibiotics, demanded to be tested a 3rd, 4th, 5th time. I knew something was wrong with my body--and though there were periods through my twenties and thirties, whether due to a lack of health insurance or financial resources or both, my fight for my health lost some of its bravado--I never gave up. I’m still fighting.
So here I am, telling more of my story, and I'm thinking about Susan Sontag. "Illness is the night side of life, a more onerous citizenship," she writes. "Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
I'm also thinking about the spring of April 1999, a season of above-average temperatures for the northeastern United States. That's where my story, my initiation into "the kingdom of the sick," begins. That spring, sometime in March, was the last time I can remember what it was like to feel well: a light body, bones full of air, always moving, a belief in motion. That is the closest I can come to the feeling of being “well,” and it’s an intellectual abstraction at that. My body itself doesn’t remember. I have been in the kingdom of the sick, the "night side of life," for 15 years.
Well: pronounced /wel/, an adverb meaning in good health; free or recovered from illness; sound in body and mind; pleasing, or good. As in, Are you well? He is not a well man. All is well with us. From the Middle English and Old English wel, cognate with Dutch wel, German wohl, Old Norse vel, Gothic waila. Also the High German vel, or “fur,” and the Latin velum, or “veil.”
But also well, a noun: a shaft sunk into the ground to obtain water, oil, or gas; a plentiful source or supply. Archaic: a water spring or fountain. As in, She fell deep into the well.
When I realized I was unwell, I was in a backyard staring at a blooming wisteria, purple and vainglorious. I didn’t know, then, that wisteria is considered an invasive species in some places, especially in the southeastern United States. It pushes out native plant species, chokes them out. I learned that there is a Wisteria in Sierra Madre, California, an acre in size and weighing 250 tons--the epitome of proliferation, of spilling into. A kind of natural lust. Also sounding like lost, loss.
Sometime in that warm spring of 1999, a small black-legged tick commonly called the deer tick, Ixodes Scapularis--at whatever life-stage, nymph or adult--crawled out to the edges of the high grass in the Hudson Valley of New York, and then onto my body. I never felt the bite, I never found an engorged tick, I never developed the characteristic bull’s-eye rash.
In April of 1999, during finals week at NYU, I came down with flu-like symptoms, neck and joint pain. I shrugged it off as a spring cold due to the stress of sleepless nights studying and writing papers, and for a while my body fought off what I thought was just a typical virus. But with every exam booklet I finished, I became more and more exhausted. By the time I returned home to Orange County, New York in mid April, I knew something was wrong. And there I was, staring at the blooming wisteria, feeling like something had drained all the blood out of my body and seeing the world as if through a milky, distorted glass.
A month or two later, still on summer break, I started having more severe joint pain, stomach problems, migraine headaches, debilitating fatigue and exhaustion, and cognitive problems, and I asked my family doctor, who had known me since I was a child, to test me for Lyme disease. My results came back negative. He did something I would see so many doctors do over the years when confronted with my illness, something I will never forget--he threw his hands in the air and shrugged. He gave up. He passed my symptoms off as nothing. "You're a young woman,” he said. “You've just started college, you're probably just depressed."
By this time, the infection the tick transmitted was in my blood, and even as my immune system put up a defense the bacteria had disseminated into my muscle tissue, my heart, my joints, my brain, my spinal cord, and the entirety of my central nervous system. The spirochetes (the name given to the spiral-shaped Lyme bacteria, similar to Syphilis) dealing with an immune response, changed the proteins on their surface to avoid antibodies; they slid into hiding like shape-shifters, changing from their corkscrew spirochete form into the l-form and the cyst form (different forms of the Lyme bacteria that are harder to treat). Biofilms grew around them. They began to weaken my immune system and deregulate hormones. At that point, a short course of antibiotics wouldn’t have been be able to kill the disseminated, transformed bacteria. I had no idea, then, that in many ways it was already too late. That my "good passport" had been seized, perhaps forever.
In the world of science, Ixodes Scapularis, the most common tick that transmits Lyme disease, is a type of parasite, a vector for an infectious disease feeding on white-footed mice, rodents, and the ubiquitous white-tailed deer of the US. At present, Lyme disease is the number one vector-borne disease in the country, and many other co-infections are now being transmitted along with Lyme--Bartonella, Erhlichiosis, Babesiosis, to name a few. Each year in the US, according the CDC, 300,000 people (a low estimate) are infected with Lyme disease. To give you some perspective, in 2013, 47,352 people in the US were diagnosed with HIV. Lyme disease is infecting six times the number of people in this country each year as HIV is. It's a staggering number.
Parasite: pronounced /par-uh-sahyt/; originating in 1530–40; from the Latin parasitus, from the Greek parásitos; a noun meaning one who eats at another's table, but originally an adjective meaning feeding beside; equivalent to para- + sît (os) grain, food + -os adjective suffix; an organism that lives on or in an organism of another species, known as the host, from the body of which it obtains nutriment. The scientific meaning "animal or plant that lives on others" is first recorded in 1646.
I learned that in Greek plays, the parasite had its own mask. As in: the parasitus or parasite lives only for himself. He is often seen begging for meals or being refused them. He lies for his own gain. He dresses in a long, black or gray garment with long, doubled sleeves.
I want so badly to hold that tiny tick in my hand, so small that I could easily crush it between two fingers. Such a small thing, so delicate, and yet the bacteria it carries can destroy lives. I never found it--it’s like a baby tooth swallowed in sleep, a tiny piece of tumor I will never see, a kidney stone. I look online at the images of borrelia burgdorferi spirochetes, spiraled eels, and try to imbue their microscopic image with the horrible disease they bring. It's not that what's happened to me, and what's still happening to me, doesn't feel real. Most of the time it feels so real, I want out of this skin, this body, so badly it's as if I'm buzzing all over with electricity.
I was not the first, nor the last, to be visited by the "Great Imitator," as scientists like to call Lyme. As a child in the early 1980s, I watched my brother come down with the same mysterious symptoms after we vacationed south of Cape Cod, Massachusetts, in the center of what scientists believe was the originating area of the Lyme outbreak, between the southern shores of Massachusetts, to Nantucket Island, to Lyme, Connecticut. My family and I, and tens of thousands of others, were in the middle of a perfect storm: Suburban homes and development had encroached further into the woodland habitat of deer, mice, and the other animals that were hosts to the Lyme bacterium for many years before it became a zoonotic disease, making the jump from an animal host to a human one--like Ebola, for example--and started to wreak havoc on a species that had never before encountered the disease. In addition to suburban development of woodland areas, temperatures had been growing warmer and extending the range of the deer tick and the seasonal window for transmission, while the larger predators that would have controlled the mouse population (foxes, for example) and the deer population (wolves and other larger predators) were gone. We had made sure of that through hunting and habitat destruction. We had gone into the woods, or very near, and what found us there would change us irrevocably.
It took years after my family first vacationed south of Cape Cod for my brother to be diagnosed with Lyme Disease. But it was only a matter of weeks after that trip that he became horribly ill. He was riddled with unexplained high fevers, juvenile arthritis, and migrating joint pain making him barely able to walk, along with nerve damage, brain lesions, seizures, and psychological changes. He was never the same. It was 1984. He was 8 years old.
By the end of the summer of 1999, I too was severely ill. Back at school, I went to the NYU Student Health Center and asked to be tested for Lyme disease. I thought I would for sure receive better, more advanced care there. But over many long months of suffering, multiple Lyme tests came back negative. The diagnosis of Lyme was tossed to the wayside and never discussed again, and I was bounced from specialist to specialist, even to a psychiatrist for a psychiatric evaluation, with no resolution. I was scoffed at again and again for suggesting that maybe, despite test results, I really did have Lyme--or otherwise something else. I couldn’t be that sick with no known cause--but no one could tell me what was wrong with me: primary care physicians, neurologists, psychiatrists, gastroenterologists, endocrinologists, et al. Again came the shrugs and the same statements I had heard earlier, word for word: “We can’t find anything wrong with you. You’re a young lady, you’ve just started college, you’re probably just depressed.” Again, I was a woman. Again, I was just depressed. Somehow my gender was a terribly important symptom in my so-called non-illness, as if being female increased the odds that I was making much ado about nothing, or that I was more mentally unstable. By this point, I was enraged. I called my family physician and the NYU health center and demanded copies of my medical records. I started poring through them as if there was some missing person. And there was one. It was me. I was 19 years old.
I didn’t know, back then, that the tests my doctors had ordered--the only tests covered and endorsed by insurance companies to this day--were unreliable, that upwards of 30 to 50 percent of people receive false negatives. I didn’t know that Lyme disease, for the most part, is a clinical diagnosis, not only because of the ever-continuing unreliability of the tests covered by insurance, but with any test, Lyme Disease is a slippery eel. The Lyme bacteria cloaks itself, changes forms, hides from the immune system, and suppresses immune response. Any blood test looking for a specific immune response or antibodies to Lyme disease can, without a doubt, come back negative even if someone is infected. Not everyone develops a bulls-eye rash, or any rash at all. I didn’t know just how uninformed doctors were to the seriousness of Lyme disease, the importance of early treatment, and how widespread it was. When they told me I didn’t have Lyme disease, I made one of the biggest mistakes of my life--I believed them.
I suffered for 14 years before a wonderful doctor thought to retest me. I was haunted by the negative Lyme test results of my past and still chronically ill--my condition worsening after my first spinal surgery in 2013 to the point where I suffered a total physical collapse. Rather than rely on the typical ELISA test, he ordered further tests as well, like the Western Blot. And rather than simply rely on the CDC and IDSA’s criteria for infection based only on those tests, he considered my frequent exposure to ticks in the lower Hudson Valley in New York (an area with some of the highest rates of Lyme infection in the country), my entire medical history, and my debilitating symptoms, and decided that my results--a positive ELISA and a few bands on the Western Blot--indicated a late-stage Lyme infection. He had seen so many patients from Sontag’s " night side of life," and he truly saw me, along with the disease that had been derailing my life, as I sat in his office, slumped in a chair and barely able to hold up my head. By then I could barely eat or get out of bed. I couldn’t take showers. I couldn’t make it to work. My body was filled with lead and my head stuffed with cotton. I had fallen deep into the well. He started to pull me out of it.
By January of 2014, after three months of oral antibiotics had failed to make any headway with my Lyme infection, a PICC line, or catheter, was inserted into my upper arm and threaded through a vein into a large vessel above my heart. I would spend the next eight months with the PICC line in, undergoing, on and off (because of insurance denials), daily IV infusions of Rocephin, a powerful antibiotic used for advanced cases of neurological Lyme diseases. My insurance company, after the first month of treatment, pulled the plug and stopped paying for the drug, for the supplies to care for my PICC line, and for the weekly nursing care I also required, stating that one month of treatment was all that was necessary for Lyme disease. It didn’t matter to them that my doctor had prescribed a minimum of three months of continuous treatment and that any interruption in that treatment would allow the Lyme bacteria to survive. It didn’t matter that scientists, researchers, and major organizations such as ILADS (International Lyme and Associated Disease Society), among others, strongly recommended that Lyme treatment entail long-term antibiotic therapy. In fact, Connecticut, Rhode Island, and Massachusetts are among the handful of Northeastern states who have now put laws in the books requiring insurance companies to pay for long-term antibiotic treatment in Lyme patients. It also didn’t matter that stopping the care of my PICC line endangered my life; that I could have suffered a deadly blood clot or infection if my line was not flushed and cleaned daily. Each day I thought of the catheter threaded up into a vessel above my heart, as if I could feel it; I wondered if or when I might suffer sepsis, that cascading, blood-borne infection that can develop from an IV line and drop organ systems like dominos as they fail, one by one. Kidneys, liver, lungs, heart.
I appealed the insurance denials not once, not twice, but three times. The process and the paperwork were insanely confusing and misleading. No one at Oxford would give me any information regarding the process. I was told that the appeals department did not even have a phone number to call, but only a fax line to receive appeal paperwork. I requested a Complex Case Manager, a person listed on their website who helped insured members manage and coordinate care for themselves when they were afflicted with chronic or complex illnesses. I called Oxford five times over the course of a week to request this assistance, and each time I was told that Complex Case Managers did not exist. It wasn’t until the fifth call, when my boyfriend at the time took the phone from me, as I had just crumpled to the floor sobbing, and demanded I be given a case manager for my situation, that something changed. Whatever he did worked: I received a call from my new Complex Case Manager the next day. Unfortunately, she would end up providing a plethora of incorrect information regarding my coverage and appeals. But at least I was vindicated by her existence.
In the meantime, they suggested that I visit the Emergency Room every day to flush my line and receive nursing care to maintain the PICC line, even though I could barely get out of bed. What didn’t make any sense was that the monthly cost of my treatment was around $1,200--while a single emergency room visit was far over the $1,200 price tag of my monthly Lyme treatment. How was it in their best interest, and mine, for them to pay $36,000 for 30 days of ER visits when they simply could have approved my monthly IV treatment for 1/30th of the cost?
Finally, after months of appeals and months without antibiotics as my Lyme infection grew worse, I took my appeal outside of Oxford to the New York State Department of Financial Services. If you’ve exhausted a certain number of appeals within your health insurance company, you’re entitled to a review of those appeals by this department, who can order your insurance to pay for your previously denied care.
Two days after I filed my expedited application with the New York State Department of Financial Services--an expedited application because of my worsening condition and the risk to my life from my neglected PICC line--I received news that I had won my external appeal. Oxford was ordered to provide me with my prescribed treatment and nursing care immediately. I remember dropping to my knees when I received that phone call. I felt like I had a won a war.
Unfortunately, only weeks after I won my appeal, I was let go from my job because of my illness and inability to work. In losing my job, I also lost my health insurance, and in losing my health insurance, I also lost my Lyme disease treatment.
Having had to knock at Oxford’s door again and again while I was so severely ill, to go through appeal after appeal with denials, misleading information, and confusing paperwork slipped under their battering ram-proof door, I kept being turned away. I was a subject of the king requesting an audience on deaf ears. I was no one. I was that missing person. I think of insurance companies now, too, as wearing a mask. They, too, carry their own deadly pathogens. They too had become parasites, those who lie for his or her own gain, who dress in a long, black or gray garment with long, doubled sleeves.TO BE CONTINUED