I used to brag that I never got sick. I rarely came down with colds or the flu. I had health insurance for catastrophic illness and only used it once, for surgical repair of a broken leg, the result of heli-skiing, the sport of a vigorous and fearless person.
But in 1999, all that changed. I learned what it is like to have a disease with no diagnosis, to be baffled by what insurance covers and what it does not, and to have a mind that can’t think fast enough to know whether a red traffic light means to press on the gas or hit the brakes. I have late-stage neuroborreliosis, otherwise known as Lyme Disease. The neurological part reflects the fact that the bacteria, a spirochete called borrelia burgdorferi, has gone into my brain.
My case is in many ways typical. Like many, I had little awareness of Lyme disease. I did not think about Lyme because I live in California, at least that’s where I file my taxes. For a good long while, it did not seem significant to me or to others that I also have a home in New York and that I spent weekends in upstate New York. Then again, one does not need to live on the east coast to get Lyme. You can go hiking in the woodlands of Mendocino, Sonoma, Santa Cruz, and the Sierra foothills, just to name a few hiking spots Lyme ticks and I are fond of.
But my particular interloper found me at an outdoor wedding on June 1, 1999. We were in Dutchess County, New York, a place that was lushly bucolic–complete with babbling brook and trees, logs to sit on and cool grass for walking barefoot. Dutchess County, I would learn later, also had the most number of cases of Lyme Disease in the country that year. And the particular swath I was in had had ten times the number of cases as the rest of the county.
The day after the wedding, I saw a bright red rash on my shin. I briefly thought about Lyme disease, but the rash lacked the “bull’s-eye” that most infectious disease doctors say is characteristic of Lyme disease. So no worries! My rash had a tiny black speck in the center, what I assumed was a pinprick-sized blood blister, the result of perhaps a spider bite. I avoided scratching it, and thus, I watched that dot grow more rounded. What I was watching, of course, was a nymph tick feeding on my leg and regurgitating bacteria into me. The black dot fell out but the rash grew larger and brighter red. After a month, light red splotches bloomed on my arms.
The day after I was infected, I had another symptom, a very unusual one for me and unusual for anyone in the summer. I had the aches, pain, and fever of the flu. I had not had the flu in about 15 years and was disappointed my record had come to an end. But within a day, I managed to beat it back, and I never developed respiratory symptoms–no stuffy nose or hacking cough. I thought to myself: What a great immune system I have!
More symptoms crept up, which I passed off as related to stress and airline travel–a stiff neck, insomnia, a constant headache, and a bad back followed by a frozen shoulder. I was often tired and jittery, but that, I reasoned, was the consequence of an active life and too much coffee. Who was I to complain? I had a wonderful life, a great husband, a lovely home, a successful career.
Then my feet grew tingly and became numb. At my annual checkup, I mentioned this to my doctor. She said I had neuropathy, which is not caused by stress. I related that I had developed a strange rash a few months earlier. Could it be relevant? No, my doctor immediately replied.
Like many chronic Lyme disease patients, I was launched into a medical maze, searching for answers as things worsened. I told my husband that something in my body had broken. It was falling apart. I went to specialist after specialist, and each one found some possible cause within his or her specialty. The weirdest symptom was plunging blood sugar, going down to the 20s and 30s, before bouncing back up to normal. That so alarmed my doctors they hospitalized me. An MRI revealed 14 lesions in my frontal and parietal lobes, but my doctors felt that was normal for a person my age; I was 49 at the time.
A CAT scan showed an incidentaloma on my adrenal gland, a small 2 cm tumor. That could be the reason for the blood sugar plunges, the racing heart, the specialist said. It could be benign–or not. An option was presented: I could have CAT scans every six months, at my expense, since my insurance did not cover preventive care. Or I could have my adrenal gland removed laparoscopically on the premise this was the cause of my symptoms, in which case, insurance would cover everything–all my tests so far, the surgery, the follow-up meds. The surgery was supposed to take an hour and a half. But there were complications. The artery to my spleen was accidentally cut off. In the end, the surgery took five hours. I was put on cortisone and the symptoms abated–but only briefly before they worsened and became bizarre.
Now I had hallucinations, what I later learned from a neurologist were simple partial seizures. I saw people walking into the room, two girls jumping rope, numbers spinning on a lit-up odometer, a fat poodle hanging from the ceiling. They disappeared after a minute or so. After the first hallucination, I did not take the others for anything but a weird brain quirk. Most were fairly entertaining. The ones with sudden putrid rat smells were not. But then there were other, more serious seizures, complex partials with an absence of consciousness. My husband said I acted at times as if I were in a trance, eyes wide open as if scared and unresponsive to people around me. I had no memory whatsoever of those episodes, and in fact, at times, my memory of things that happened just before and just after the seizure had been erased.
By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. When I wrote by hand, I reversed letters. When I spoke, I substituted words with like-sounding beginnings. I did not possess any of the skills necessary to write fiction. I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery. Thus, my novel-in-progress lay abandoned between feeble attempts to resuscitate it. At times, when asked what I was writing, to my horror, I could not remember, and I would struggle over the next hour trying to recall the faintest details.
I no longer dared get behind the wheel of a car. When I did venture out on foot, I would sometimes find myself lost in what I knew was a familiar place, my neighborhood of thirty years. Why didn’t that building on the corner look familiar? Why did everything seem as though it were the first time I had been there? I easily became lost in stores, hospitals, hotels, and I would panic, certain I was losing my mind and developing dementia related to early Alzheimer’s. My anxiety was a hundredfold of what was warranted, even in a post 9/11 era. Eventually, I could no longer leave my house alone. In any case, it hurt to walk too far. My muscles were stiff, my knees and hips ached. And I was almost too tired to care anymore.
Let me add here that my doctors were affiliated with major urban hospitals, were tops in their department, well-known, well respected. I liked them. Not once did they raise the idea that I was a hypochondriac. But they also did not raise the possibility of Lyme disease. One doctor, however, gave me a battery of tests, including one called an ELISA. I looked it up and saw it was a screening test for Lyme. There I saw all my symptoms. When the doctor told me the test was negative, I asked him about the accuracy of the test. The doctor said it was impossible for me to get Lyme in California. I said I also lived in New York. He said Lyme was so rare that it was impossible that I had it. In any case, he had not tested me for Lyme, he said. It was the ELISA for another spirochetal infection, syphilis. Wait. He thought I was more likely to have syphilis than Lyme?
I turned to the Internet, which is where doctors believe hypochondriacs catch “terminal” diseases. And there I read more about Lyme, about the inadequacies of the ELISA, especially with late-stage cases, one that is beyond a month since infection. I saw the same rash I had had four years before, read about bizarre symptoms like mine. Further sleuthing gave me the name of a Lyme-literate physician in San Francisco.
My Lyme doctor considered the history of my rash, the summertime flu, the migrating aches and neuropathy, the insomnia and fatigue. He thought lesions in my brain were significant in light of my neurological symptoms. He saw on previous tests that I had some interesting changes in my immune system. He ordered a complete battery of tests from IGeneX, a lab specializing in tick-borne illnesses, to check for not only Lyme disease, but its common co-infections, ehrlichia, babesia, bartonella, all of which can be carried by the same tick that gives you Lyme. Two weeks later, I learned I was positive for Lyme on the Western Blot, as well as on the PCR, (polymerase chain reaction) which can help detect actual DNA “debris” of the tick. My doctor told me that the tests only confirmed what he already knew.
Let me hasten to add that not all chronic Lyme patients test positive on the Western Blot, at least not at the levels set by doctors who follow CDC surveillance criteria as diagnostic. There is much more to be done before the tests can be considered reliable in every lab across the country. Unfortunately, most doctors still go by the old and unreliable standard: that Lyme is rare and exists only on the East Coast, that a bull’s eye rash and fever must be present, that you are tested first with an ELISA, which is considered a false positive if you had no bull’s eye. If you did have the bull’s eye, you must then get a positive Western Blot. That will get you about two weeks of antibiotics. Further insurance coverage of treatment and medications is denied. That is the standard recipe that has destroyed many lives.
Like many late-stage neurological Lyme patients, it took a while for symptoms to begin to lift. A day after starting antibiotic treatment, I became feverish and ill with the classic Jarisch-Herxheimer reaction, which serves as a second confirmation of a spirochetal bacteria infection. A month later, the joint and muscle pain eased up somewhat. Two months, and some of the fog finally lifted, and I frantically wrote for long days, fearful that the curtain would come down again. After six months, I had less muscle stiffness or no joint pain remaining. After two years, I felt I was back to feeling well.
Today, I can once again write fiction, speak at conferences without notes, and walk in my neighborhood alone and without anxiety and panic. I can follow conversations, understand ironies, and tell jokes. I’ve been under treatment since 2003 and consider myself healthy, if healthy means having your life back in all the ways that matter. I still have neuropathy–numbness in my feet, which causes some balance problems. And I have epilepsy for life, due to the 16 lesions in my brain. Yep, 16 and not 14. I added a couple between the first MRI and the MRI done after I was diagnosed, during that period when the bacteria were happily munching on my neural tissue. I also have a sleep disorder that could have me nodding off even when talking and standing on my feet.
I must now take seizure medication for life, as well as medication to keep me awake. Those cost about $2000 a month, most of which is covered by insurance. Insurance will not cover my antibiotics, which I still take. When I’ve gone off antibiotics, the problems come marching back, one by one, the flu-like symptoms, the headaches, the arthritis. I think about four and a half years of lost time, of pain and panic. I think about our health care crisis. I think how a Lyme-literate physician and about $50 worth of antibiotics early on would have taken care of my disease. None of those other tests–the multiple MRIs, the CAT scans, the 5 hour surgery, the 10 specialists, the lifetime of meds, the required yearly visits to my neurologist–none of those costs would have been necessary. Because of ignorance, I am a burden on the medical care system.
My disease is managed, but I am not cured. Borrelia is a wily spirochete and it, finally, has an identified genotype. And so now we know that with each replication cycle, there are changes to its phenotype here and there. We know that the bacteria can go into different forms, become wolves in sheeps clothing, and evade detection and antibiotics. When I say “we know,” I mean, of course, those doctors who are literate on Lyme disease, who don’t cling to the notion that Lyme is rare or that the ELISA is accurate no matter how long you’ve been infected, who don’t think that one size of antibiotic fits all.
By “we,” I also mean those who have persistent Lyme and know the enemy still within us. I am aware that the bacteria in me could one day run rampant and that my illness could progress and leave me disabled once again, unable to read, write, think, or walk. It is the reason I am building a house for the future, which will be completely accessible, with wide doorways, handrails, an elevator, level entries and exits to outdoor areas, a roll-in shower, a walk-in bathtub, lower-height counters, and a whole host of other preparations most people would never think would be necessary.
As a patient with persistent Lyme disease, I have joined a club of people with a stigmatized illness, one many doctors do not want to treat. I am lucky to have a doctor who is willing to provide open-ended treatment. I am lucky I have insurance. Most Lyme patients are denied insurance. They are viewed as whacky. They have gone without appropriate care for so long they have lost their health, their jobs, their homes, their marriages, and even their lives.
I now know the greatest harm borrelia has caused. It is ignorance. That ignorance is destroying more and more people as an epidemic grows. Lyme disease is now the fastest-growing vector-born disease in the country. Much more is needed to know how to diagnose it and how to treat it.
In the meantime, my advice to friends and family is to be aware and to be informed. Realize that Lyme disease has been reported in every state in the United State, in Europe, in Asia, every continent except Antarctica. The CDC estimates the actual numbers of those infected each year is at least tenfold of what is documented as confirmed cases. Some Lyme researchers believe the numbers are much, much higher.
How To Avoid Getting Lyme Ticked
In 1975, Lyme Disease was named after the town of Lyme in Connecticut. People then thought it was a local disease, as if the bacteria resided only there. Today, you could nickname that bacteria after thousands of cities. Where I live, “there is no Lyme”–or so most people would say if you asked. I know otherwise. A friend biked up to the top of Hawk Hill, sat on a wooden log, and picked up a tick. He was positive for Lyme disease. Reporting of Lyme is incomplete, so if you are relying on reports, you are relying on unreliability.
I have found a way to better judge if Lyme is in the area: ask a veterinarian. They know more about Lyme than most doctors I’ve met. If they test for Lyme, they test for co-infections, knowing there is a 50% chance the dog will have at least one co-infection You can also ask people whose dogs run about in the fields and the woods. A couple I met recently said their dogs had both had it repeatedly. Another dog was untreated and died. They feared a neighbor had it as well.
If you are going into an area with deer use insect repellent, one that lasts for, say, 12 hours, and with 30% DEET. UltraThon is a good choice. By the way, 100% DEET does not mean it’s more effective, especially, if it wears off after two hours.
When going into tick country, spray your clothes a few days before with Permethrin. Wear light-colored pants to better see if ticks have glommed onto you for a ride and a snack.
Don’t lean against a tree trunk, marveling how you are one with nature. Nature may be a tick. Don’t sit on logs, wooden benches, stone walls or the ground in tick-infested areas. Ticks love wood surfaces even more than leafy ones. Recognize that Lyme ticks don’t wait until summer to be active. Know where Lyme ticks can hide on you, and sometimes these are not the obvious places you would look. They might be under armpits or the backs of knees, or even in the groin area. And if you are bitten by a tick, save it and send it to be tested. Some say you don’t have worry unless the tick was attached for over 24 or 48 hours. But how do know when the tick first attached itself to you? And why is it that my tick caused me to be sick less than 24 hours later? If you don’t see a bull’s eye around your rash, realize that about 50% of the people diagnosed with Lyme never saw the tick, and over 50% of those who actually had the rash did not see a bull’s eye.
Before you set out to be tested, be aware that the guidelines set by the Infectious Diseases Society of America are those that have left many misdiagnosed and untreated. For an eye-opening view on the politics of Lyme disease and its effect on real and very sick people, go see the film “Under Our Skin,” an award-winning documentary that is as suspenseful as a murder mystery. If you suspect you have been infected, go see a Lyme-literate physician, for example, a member of the International Lyme and Associated Diseases Society, www.ILADS.org. Don’t be put off if your regular doctor raises a skeptical eyebrow. Go to a doctor who will give you the more reliable test, a Western Blot, preferably by a lab like IGeneX.
I wish I knew ten years ago all of the things I’ve just mentioned. If I had, I might have avoided getting bitten. I would not have let a treatable disease turn into a permanent, disabling, and life-changing one.
Be knowledgeable. And if you know someone with Lyme disease, be compassionate.
Editor’s Note: Amy’s disease has advanced since this story was written and has left her with epilepsy. Today, while not cured, her disease is medically managed, and her health, by her own new definition, is excellent. She now has a valid excuse why she cannot drive and must have her husband play chauffeur.