I have late-stage neuroborreliosis, otherwise known as Chronic Lyme.
I have had this disease since 1999. My case is, in many ways, typical. Like many, I had little awareness of Lyme disease, because I did not live in what was considered the tick-infested hotbeds on the East Coast. I am a Californian–that’s where I file my taxes–and I had been living among the hills of San Francisco with its tick-free, concrete sidewalks. For a good long while it did not seem significant that I also have a home in New York City, that I weekend in the country, and that my main form of exercise is hiking in the woods. In addition to trekking in the woodlands of Mendocino, Sonoma, and Santa Cruz counties in California, I have also sojourned to leafy spots in Connecticut and upstate New York. I once loved to sit in the tall grass next to a river and lean my back against a shady oak tree. I did not know that I had also placed myself in danger.
I passed off my early symptoms as stress and too many airplane rides with little sleep. I had an accumulating array of discomforts–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 and exciting life with too much coffee as fuel. Who was I to complain about a few aches and pains? I had a wonderful life, a great husband, good friends, adorable dogs, lovely homes, and a successful career. Before 1999, I had been rarely sick and went to the doctor only for my annual checkup. Even when I came down with the fever and the aches and pains of the “flu” earlier in the summer, I had managed to beat it back without developing any of the respiratory hacking and lingering problems as the flu waned. What a great immune system I had!
Then more symptoms developed. When my feet grew tingly and then numb, I mentioned to my doctor that I had had an unusual rash earlier that year. It had begun with a tiny black dot that I guessed might have been a pinprick-sized blood blister. It grew more rounded as it filled, and then I either scratched it out or it fell out on its own, leaving a tiny pit and a growing red rash, which, curiously, did not itch, but lasted a month. Because that rash seemed so unusual, as did my neuropathy, I wondered aloud whether they were related. My doctor said no, although the neuropathy was something to watch.
Like many chronic Lyme disease patients, little symptoms came and went: hearing sensitivity, jaw pain, shock-like pain in my legs, a racing heart. Some symptoms remained: a form of insomnia in which I was jolted awake at 3 a.m., as if injected with caffeine. I could return to sleep until 6 a.m. Despite all this, I managed to keep my life together. People who saw me would not have known anything was amiss. I soldiered through, despite fatigue.
When my next novel was published, I embarked on a four-month tour that took me across the U.S., Europe, and Australia. When I finished in Wellington, New Zealand, my body, sensing it could finally let go, collapsed. I told my husband that I felt as if something in me had broken. The glue and tape that had held me together for the book tour was no longer sufficient. Something was wrong.
I developed anxiety, a feeling of physical danger, as if a knife would be plunged into my back. I was easily startled. I checked the locks on hotel doors a dozen times.
I trained one of my dogs to do room searches in hotels and to alert me if someone came into the room without my permission. I had to have my dog with me at all times. I could not go into a public bathroom, unless my husband was standing outside and could hear me if I shouted. I had to be on the cell phone with him if a crossed the street to my neighbor’s house. Once I found myself alone in our home in NYC. A snow storm cancelled my flight, and I was stuck for four days. I could not leave the loft to buy food. I ate canned food, old pasta, and stale crackers. I began to force myself to leave the house. I would race to the car, heart pounding. If I had not been me, I would have considered myself wacky. I knew I came across that way, but I still could not help from feeling this way. Anxiety had become my most disabling symptom. I needed serious help.
I first went to see a psychiatrist. I had never been the kind of person who wanted to go through therapy. Pay $200 an hour to have someone listen to me ramble on? The psychiatrist I saw asked me about events in my life that may have contributed to a sense of danger. There were plenty of things: my brother and father dying young, a good friend murdered, a near rape– all things that were traumatic, but had never had any long-lasting effect on me. She diagnosed me as having PTSD and Major Anxiety disorder. She also said that something medical might be at play, and that I should have a complete medical workup.
My regular physician ordered a battery of tests. One day she called and said that all the tests came back as normal, except one: my blood sugar. It was low enough that I should have been unconscious. Yet I had walked into her office and out. She thought I might have a brain tumor or a pancreatic tumor. My father and brother had died of brain tumors. My mother had had a benign one. My number had come up, I thought. My doctor wanted to run more tests. There was another low blood sugar reading. An MRI was done of my brain, and I had full body CT scans.
The MRI revealed 13 lesions in my frontal and parietal lobes. My doctors felt that was normal for a person my age; I was 49 at the time. At least there was no brain tumor. I was elated. A CAT scan showed I did not have a pancreatic tumor, however, they had found an “incidentaloma” on my adrenal gland, meaning one of those tumors you find as part of a look-see for something else. That was where I hung my hopes: a tiny tumor, hopefully benign, which had been causing trouble I had surgery, and after examining the tumor, my doctor announced that it was benign, and very well could be the source of my problems. Because one of my adrenal glads had been removed, my cortisol levels dropped, and until the levels stabilized, I had to take cortisol. On steroids, I was full of energy. When the steroids were gradually reduced and then stopped, the old lethargy and other problems returned.
More symptoms cropped up, including a bizarre one. I had visual hallucinations: picnickers from a Seurat painting standing in the room, two girls jumping rope, numbers spinning on an illuminated odometer, a fat poodle hanging from the ceiling, aliens suspended on a string that looked like they were made for B movies. None of these hallucinations had any meaning to me, and they lasted only about 20 seconds at most. I was not frightened by them. I was fascinated.
I mentioned the symptoms to my doctor and he thought it was odd, because I did not act as if I was psychotic. I was prescribed anti-depressants, Prozac. I then developed nightly nightmares in which I was killed every way you don’t want to imagine. I saw victims of war blown apart before I too was killed. I was drowned, suffocated, shot, decapitated, knifed, electrocuted. I fell from tall buildings, was in planes out of control. I acted out my dreams, flailing about, running in my sleep, yelling, punching at lamps or my husband, and once landing on my head in a dive to tackle my dream assailant. I stopped taking the anti-depressant and the nightmares stopped.
I was referred to specialist after specialist, until I eventually had consulted ten and had taken countless lab tests. 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, for 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. One time, when asked what I was writing, to my horror, I could not remember, and I struggled over the next hour trying to recall the faintest details.
I no longer dared get behind the wheel of a car, because I could not process fast enough when to depress the accelerator and when the brake as the traffic lights changed. 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 husband also reported that I acted at times as if I were in a trance, eyes wide open but unresponsive to his or a friend’s questions. Someone asked me if I was feeling better. He said I had acted strangely the last time he saw me, as if I were suddenly ill and unable to speak.
I withdrew more from public. I was tired, exhausted, breathless if walked a block or up the stairs. My muscles were stiff, my knees and hips ached. And I was nearly apathetic about all that was happening. 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. I still do. Not once did they raise the idea that I was a hypochondriac. But they also did not raise the possibility of Lyme disease.
While being worked up to rule out M.S., the doctor ordered, among many tests, an ELISA. I looked that up on the internet.And there I saw that an ELISA was used to screen for Lyme disease. Upon reading further, I saw all my symptoms. Lyme, I learned, was a multi-systemic disease, an umbrella under which many symptoms could be found. I learned that the ELISA was a screening test, and it was not always accurate. When I went back to the doctor, he said the ELISA was negative. I said that the test was not always accurate and that all my symptoms were consistent with Lyme. He said it was impossible I had Lyme. It was rare and not in California. I said that I lived in NYC as well and often went to the countryside where there were Lyme ticks. He insisted it was not Lyme, that it was too rare, and that he had not tested me for Lyme, but for syphilis. I was stunned. He thought it was more likely I had syphilis?
I went sleuthing for a Lyme specialist and found one in San Francisco, who was also doing research on Lyme disease. What luck! This doctor considered the history of my rash, the summertime flu, the migrating aches and neuropathy, the insomnia and fatigue. He thought what had now grown to 16 lesions in my brain were significant in light of my neurological symptoms. Those lesions could be related to neuroborreliosis, that is, spirochetes in the brain. He saw on previous tests that I had some interesting changes in my immune system, and then 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. Two weeks later, I learned I was positive for Lyme on the Western Blot and a PCR. I did not have any co-infections, like babesiosis or erlichiosis, which would have made treatment more difficult. I wanted to celebrate. I knew at last what was wrong with me. Now I could begin fighting the right enemy.
Let me hasten to add that not all Lyme patients test positive on the Western Blot. For one thing, the tests miss something like 50% of patients who actually are infected. I was later part of a small study in which my blood was drawn and sent to five labs throughout the country, including those at prestigious institutions. The results for the ELISA and Western Blot were different for every one of them. One reported I had a negative Western Blot, another said I had a positive PCR.
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, a second confirmation of the disease. It is a immune response experienced by patients with a spirochetal disease to antibiotics. 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 no muscle stiffness or joint pain remaining. I could make my bed without feeling exhausted. Improvements came in increments. I celebrated each one. They were like gifts. But if I overdid it, if I did too much in one day, I paid the price by becoming ill–fluish and exhausted–for two or three days.
The hallucinations and vacant staring turned out to be simple and complex partial seizures in my temporal lobe. I started taking anti-seizure meds, which also took away the pain that accompanied my neuropathy. Those two conditions will remain with me for life. The one type of seizure I cannot control with medication are reflex seizures, which occur with repeating black and white patterns–like those dotted lines on the freeway. I never liked to drive anyway. My husband is my willing chauffeur.
I took antibiotics for seven years. Whenever I stopped, my symptoms returned. I learned that Lyme can persist because the bacteria can go into what I call a stealth mode–taking on different forms and going into hiding until the coast is clear. I eventually found an antimicrobial mushroom used in Chinese medicine, ganoderma lucidum, also known as Lingzhi in Chinese, and Reishi in Japanese. By taking two types– essence and spore– six pills twice a day, I have been able to keep the bacteria at bay. By the way, this is not a treatment I would recommend to someone with full-blown Lyme disease that has never been treated. By the time I started taking the mushrooms, my disease was more like dying coals than a raging fire.
I am in this for life. But at least I have my life back. I can write fiction and having the normal difficulties every writer has in finishing a novel. I can speak at conferences and walk in my neighborhood alone, without anxiety and panic. I can do arduous book tours and do too much in one day and get too little sleep, and I don’t suffer the next day as a consequence. Recently, I swam with whale sharks for four days. As healthy as I am today, I always keep in mind that the bacteria is still in me. One day, the mushrooms or antibiotics may not be enough to stave it off. But instead of living in fear and uncertainty, I built a house that can accommodate whatever happens to me– an accessible and beautiful home.
As a Lyme patient, I have joined a club of people with a stigmatized disease that many doctors do not want to treat. While I have been lucky enough to find a doctor who is willing to provide open-ended treatment –and I have the means to pay for –many of my fellow Lyme patients have gone without appropriate care. As a consequence, 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.
Some inroads have been made. More research is showing why the bacteria can become intractable, how it can morph. The CDC, which said Lyme disease infected only 30,000 people a year, revised that number last year to 300,000, and then revised it again more recently, saying it could be as high as one million people infected each year. So why is there no public funding for dealing with this epidemic?
Lyme disease is more prevalent than most people think. It ismore difficult to diagnose than most doctors think. It requires ongoing treatment in many cases. More research is needed before we know how it can be adequately treated, and one day, cured. In the meantime, my advice to friends and family is to be aware and be informed. Realize that Lyme disease has been reported in every state. Wear insect repellent, the 12-hour kind. Check you body and all those crevices that ticks love. Check your loved ones and your kids. And if you are bitten by a tick and suspect you have been infected, go see a Lyme-literate physician. Get treated early and adequately. Don’t wait, as I did, and let a treatable disease turn into a chronic one.