When the fever left, I soon realized I had other problems. I wondered if I had brain damage from the fever. My thoughts spun around my head in fits, falling out in random “dumps” like a computer going to blue screen. CALL SYSTEM ADMINISTRATOR. I went for indeterminate amounts of time having no thoughts at all.
I was once challenged to write a piece entitled, “The day that changed my life,” and so, I decided to write about my experiences with Lyme Disease. That article would be more effectively titled, “The arachnid that changed my life.” Given the size of the tick compared to the measure of the damage it caused, the miniscule creature ought to be stuffed and put on display in the Smithsonian, or, at the very least, in a Museum of Curiosities as one might see on the side of the highway proclaiming NOAH’S ARK AUTHENTIC GOPHER WOOD NEXT RIGHT.
To say the Spring of 2012 was a hot one would be missing the point. It was something out of the Seven Plagues of Egypt. I met the arachnid in question in the garden while I was planting corn. The corn died in a series of hateful acts of vengeance, vegetables in the hands of an angry god. Extreme heat followed by hail finally culminated in a deep freeze. Every tiny, hopeful, corn stalk died a horrible death, as did the garden after that. But I digress.
I found the deer tick, but not before he’d bitten me. However, I didn’t find the nymphs, a fancy word for seed tick, a term I learned on the internet, on which I spent a lot of time “researching,” for which I would be chastised later. An article I read stated that nymphs carrying Lyme Disease hadn’t made it as far South as the Carolinas. Scientists wandered the forests of the Mid-South for days dragging nets to catch the nymphs and didn’t find one carrying Lyme.
It is possible they didn’t check their jeans.
All I needed was a bag of fertilized seed and a standard gardening outfit: blue jeans and a t-shirt. I got two Lyme-bearing nymphs the first time out. Rest assured they are pretty far South, as I found mine in my backyard in South Central Tennessee.
I didn’t find the ticks for a day or so. The bites were small, like flea bites, with a tiny black center. There was no “bulls-eye” rash.
About seven weeks later, I felt the wrath of the microscopic nymphs. I got a fever at work and don’t remember much about the days following, because my temperature soared to 105.
My brain fluid swelled so that I couldn’t lay my head on a pillow. This was a problem, since all I could do was lie in bed and pray for the sun to go down. I had a migraine 24/7. I was dehydrated. I felt like I was already dead, splayed on a lonely highway in the middle of the desert with the vultures circling. A favorite author once wrote, “Reality is a dry, dry mouth,” and that’s how I felt. Despite constant nausea, I experienced epic hunger. I wanted whole pizzas, but when food came near, it repulsed me. The food I did manage to trick people into bringing around my bedside repulses me still. There’s a commercial for a chocolate ice cream bar that gives me nightmares to this day.
My fever raged. I was alone, and I was glad. I wanted to die alone. Once a terrifying thought, it relieved me to think that I might manage to slip away quietly without a fuss.
When the fever left, I soon realized I had other problems. I wondered if I had brain damage from the fever. My thoughts spun around my head in fits, falling out in random “dumps” like a computer going to blue screen. CALL SYSTEM ADMINISTRATOR. I went for indeterminate amounts of time having no thoughts at all. The migraine stuck around for a few more days. It left after prayer. I was sitting out on my front porch freezing in eighty-five degree temperatures, and after my mother prayed, the migraine left, and I was down to Everything Else, which was a long list, but manageable, because the symptoms rarely hit all at once.
Everything Else came one at a time, and it kept on coming.
Everything Else was a formidable assortment of complaints. I soon grew tired of giving the run-down of Everything Else to the doctors.
I knew I had Lyme Disease. It didn’t take a medical degree to link the tick bite, the incubation period, and the onset of the super-high fever. The problem was getting the doctors to agree on what Lyme Disease was, how long it should last, and what treatment was appropriate. My doctor at the time chose to wait until the test for Lyme came back to prescribe drugs. Unfortunately, in a miscommunication, her staff told me 1) The tests hadn’t come back 2) The tests were negative 3) The tests hadn’t come back. Several phone calls later and a second office visit (my mother had to drive me) revealed the truth. I had actually tested positive for Lyme, way back, like, right after I came in the first time, on the ELISA test. She had called in a prescription for doxycycline, (I learned this from Walgreens years later) but my doctor kept telling me to wait for the tests. They never phoned me with the happy news. I ended up going nine weeks from the date of the tick bite without antibiotics. I had a nine-day run with the meds, and then, I was on my own.
Where to start? There was “brain fog.” That was fun. I would try to do the laundry and ruminate over how to fold the clothes, meaning I would seriously “stew” on it. I would mix up everyone’s garments. I forgot to turn the burner off when I tried to cook. Something as simple as taking food out of the refrigerator turned into a challenge. I would start to do something and lose the steps. I would forget I had a phone number programmed into my phone and get frustrated needlessly searching for it. I often experienced Bell’s Palsy, a condition in which the muscles in the face ache and then go numb. Speech is slurred or next to impossible. The face of the person with Bell’s palsy lacks expression. The whole lack of intelligence thing was detrimental to a high school English teacher, which I was. Of course, work, for me, was a thing of that past, because thinking was more like wishful thinking. I just couldn’t.
Then there was the so-called arthritis. I had all-over body aches on such a scale that it hurt just to shift position on the couch or turn over in bed. In truth, it hurt to merely sit. I couldn’t do the dishes, because I couldn’t lift them. I had to ask my husband to open everything from cans to water bottles, even something as simple as a bag of shredded cheese.
There was pulsating pain. My joints would burn and freeze alternately. There were tingling sensations, the feeling that bugs were crawling under my skin (pretty ironic) and in my brain. I experienced dizzy spells, vertigo, and a feeling of heaviness in my muscles, like I was walking through a water tank. Sometimes, the room would darken. My vision would “gray over,” like a sudden overcast sky. Other times, I would see spots. I was often overwhelmed with fatigue, a sudden need to sleep, and I would sleep, for hours. Still, I would awaken in pain or with the creepy-crawly sensation in my head, feeling as though I hadn’t slept a wink.
But that wasn’t all. My lymph nodes and glands swelled, in my neck, behind my knees. My face became puffy and red. My appearance changed. I could hardly recognize myself in a mirror. My face resembled a large, swollen cracker left in the soup too long. And I was in the soup.
Doctors soon began telling me the “good news.” I no longer had Lyme. Whatever residual symptoms, you know, Everything Else, was Something Else Other than Lyme. This Something Else, undefined, just happened to strike at the same time as the Lyme Disease that was now gone from my life. Mission Accomplished! Why wasn’t I celebrating? I didn’t have time to seek out specialists for Everything Else, the giant list of symptoms which seemed to grow rather than stay under the “cured” column like good little symptoms, because I had to go back to work.
The severe joint pain, not to mention the vertigo, meant I couldn’t drive. This is a problem for someone trying to earn a living. I missed twenty-one days of work, and when I returned, my husband and my mother had to alternate taking me to the school where I taught. I felt like a pre-teen still dreaming of getting her license, wishing her mother would drop her off at the curb, so as not to be seen by her friends. I worked the final week of school before summer break, finished up the nine-day antibiotic round, and started feeling better. That was May 25. By the tenth of June, I couldn’t move. For seven days, I rarely got up from the couch. My six-year-old son has memories of playing cards with me in my bed, of dragging the chess board over to the couch so that I could play, of reading books to me while I was in and out of my right mind. When his teacher asked him to draw a picture of his family, he drew one of me in bed with my big, blue comforter. I couldn’t help but wonder at how history repeats itself. When my dad got cancer, I sat up with him on the couch, and we watched hours of the Watergate hearings. He couldn’t get off the couch either. To me, the couch became a watermark showing me how deeply illness, and the couch, had swallowed up my life.
As the mother of a six-year-old, there was no way to wallow in bed, so I got up and moved. I walked in the park, walked around at a tractor show, only to wake up the day after with my joints screaming, my lymph nodes swollen, dragging my muscles along as if they’d atrophied overnight. Some mornings, I couldn’t lift the big, blue comforter from my body. Things I once did easily were now part of my past life. I couldn’t play guitar, and yes, I played rhythm and wrote songs on a Fender Stratocaster, an easy-playing guitar with small gauge strings I now couldn’t pick up or strum. I could barely write and not legibly, which is a problem for a free-lance writer and a teacher of literature. I couldn’t wear most shoes, because my toes hurt so much. I couldn’t hold a book to read it or an actual glass to drink from it. I could barely type on my computer keyboard and not for long without the pain in my fingers stealing every ounce of creativity I might have had.
By late summer, I experienced constant pain in my hands, knees, and toes with flare-ups that manifested unpredictably in a variety of spots. I couldn’t sleep, often waking up dozens of times throughout the night in severe pain after merely changing position or adjusting a pillow. Doctors told me I had developed a new disease apart from Lyme that was causing my “new” symptoms. They posed various theories. Thyroid trouble? Polymyalgia Rheumatica? When you don’t know what to call it, go to the Greek and Latin like a biologist making up a name for a newly discovered species. Lupus? Gluten intolerance? Multiple Sclerosis? Who knew? I got “The Speech.” It began, “There’s a whole culture, a community of people who claim to have chronic Lyme Disease, but there’s no proof that such a thing exists. I would stay away from such unscientific discussions.”
But I did read the internet blogs. Avril Lavigne contracted a debilitating case of Lyme. Darryl Hall of the old rock band Hall and Oates wrote of contracting “Chronic Lyme.” Doctors in California connected Autism to mothers who contracted Lyme while pregnant. California doctors treated Lyme with several rounds of antibiotics, all without going to jail. Hundreds of people blogged away, breaking down their lifetime experiences battling the disease known as The Great Imitator. Even Web MD verified that Lyme can cause permanent damage, including arthritis and neurological damage, if the patient goes two or more months without antibiotics, which I had.
When I finally met someone with Lyme, it was like discovering a soul mate. My husband brought him to the house to talk to me. He had developed Lyme in Missouri, moved to Tennessee, and found another Lyme-carrying nymph here. When the antibiotics didn’t kick all the symptoms to the curb, the Missourian looked to diet and vitamin supplements to fill in the gaps. He ate meat and vegetables only, took B-vitamin supplements, and walked a lot. He went to work whether he felt like it or not (and this guy works on tractors in 100 degree temperatures) except for the worst episodes, which usually lasted only a day or two. But, he admitted, he had received antibiotics in the earliest stages of Lyme. Nobody I knew had gone as long as I had without treatment.
One doctor told me that it might be a matter of patience. He said the episodes might diminish in length of duration and in intensity until they disappeared completely.
So, I pressed on, waiting for the symptoms to subside. Every month, I spent days out of work. Sometimes, I couldn’t go a full five-day work week. I had many of the old symptoms all over again. My lymph nodes swelled. Bell’s Palsy struck. The bugs crawled, my joints ached, parts of my body ran hot and cold. And then new symptoms appeared.
Right after Christmas, nearly ten months after the tick bite, I began to experience tremors. One night in November, my right shoulder moved in a jerking motion, violently. It happened again just after Christmas Day. About the same time, my right index finger moved by itself over long periods of time. I tried grasping it with my left hand, but it didn’t stop the motion. This episode went on intermittently for three days.
Contrary to one doctor’s advice, I looked on the internet for links between Lyme and Parkinson’s. I discovered that Michael J. Fox was bitten by a tick and diagnosed with Lyme while working on the set of Spin City. Although he was told to rest, Fox continued working and not long after was diagnosed with Parkinson’s. Something similar happened to my favorite singer, Linda Ronstadt. Hmmm. I learned there were two schools of thought: One was that Lyme unmasked Parkinson’s or somehow sped up the onset. The other school held that Lyme mimicked Parkinson’s and PD was a misdiagnosis, in some cases, for patients with Severe Lyme. One doctor admitted the link between Parkinson’s and Lyme was real but very rare.
There was, and is, a fair amount of conflicting information on the internet when it comes to Lyme. I read that Lyme is not fatal. I also found a number of links to Lyme support groups where people traded information, shared their suffering, and posted funeral arrangements. Parents claimed their children had died of the disease. I had not heard about these cases, certainly not in the news media. In fact, my own experience had taught me that the phrase Lyme Disease was best uttered in a whisper. Better to find Something Else as the Primary Cause, otherwise, nobody wanted to get involved. Facebook pages featured hundreds of comments revealing personal struggles with Lyme, tips on gluten-free diets, mineral supplements, videos, prayer requests, fears, and grief. If Lyme is an epidemic, it’s the quietest one I’ve ever seen.
That’s likely because no two doctors, regions, or countries agree on how best to treat Lyme. In the UK, doctors prescribe long-term antibiotics. In the U.S., the Lyme vaccine got canned in the Seventies after several people sued the drug company claiming they had achy joints. Currently, there is a Lyme vaccine for dogs but not for people. Dog owners claim it works great.
The Lyme test most used is known for false negatives. There is much confusion about the symptoms of Lyme. Some doctors still tell patients that Lyme sufferers always present with a bulls-eye rash. In truth, according to the CDC’s own website articles on the subject, only 40% to 60% of cases present that way (mine didn’t). Lawsuits and revoked medical licenses for over-prescription of antibiotics in the U.S. have most doctors avoiding new Lyme patients like the proverbial plague. Some doctors play semantic games over diagnoses like “Chronic Lyme” as opposed to “Severe Lyme,” to try and squash the idea that Lyme “keeps coming back.” Dozens of patients and doctors report that Lyme has been misdiagnosed as everything from Multiple Sclerosis to Lou Gehrig’s Disease. Meanwhile, children go without the protection a vaccine could provide, even though scientists proved there was no basis for plaintiffs’ claims of serious side effects. Today, no pharmaceutical company is willing to make the vaccine except for pets. Doctors who treat Lyme with long-term antibiotics are scrutinized by the AMA and the CDC. Not long before I contracted Lyme, a North Carolina doctor was jailed for treating his patients with long-term antibiotics.
Several medical specialists tried to help me. I saw a Vandy rheumatologist who told me I did not, in fact, have arthritis. The disease of old age had been the diagnosis of choice for most of my doctors, most of whom were younger than I and assumed that since I was over 40, I should just lie down and die. When I pressed the Vandy rheumatologist for what was wrong with me, he said it was neurological, likely caused by bacteria. Something, he said, had crossed the blood-brain barrier.
That was as close to an official diagnosis as I would get.
I was told by a Vanderbilt-trained infectious disease specialist that Lyme-bearing ticks could be found in North Carolina but not Tennessee. When I asked how they knew to stop at the state line, the woman had no answer. At that point, I realized that I held the key to my own healing. I did my own research and began a mostly organic, chemical-free, and gluten-free diet.
But the most important part of the healing process occurred when I stopped defining myself and my life in terms of the disease. In George Orwell’s 1984, the lesson O’Brien tries to teach Winston can be summed up this way: “We believe in the reality with which we are presented.” A first, the disease became the new normal, until I realized that I had accepted this. After the Missouri pep talk, I changed my diet and went back to work full-time on faith alone. God knows I could hardly get out of bed in the morning, and I still had waves of fatigue. I could barely summon the strength to go to the grocery store. I was not convinced I could survive teaching senior English to at-risk kids and do it successfully.
What I didn’t realize was how many people were praying for me, many of whom didn’t know me or didn’t know much about the situation. One night, there was a knock on the door. A woman from my son’s school, a teaching assistant who helped in the cafeteria, brought her entire youth group to my house. They had an old fashioned “prayer quilt,” the kind where a string is pulled each time a person prays. All the strings had been pulled. In other words, for the sixteen months I’d suffered, they had been praying and, as the saying goes, “pulling strings.” People in the community who knew me went out to their respective churches and asked for prayer for me. My youngest child’s karate class prayed for me right in the studio. His master teacher told me about the bacteria killers, honey and cinnamon, and I went home and drank the stuff regularly in gallons of tea mixed with frankincense.
I dropped twenty-five pounds, started walking and doing yoga, and continued adhering to the gluten-free diet. After seventeen months suffering from the pain and debilitating effects of Lyme Disease, and only weeks after the prayer vigil at my house, I began to experience stretches of days without pain. After a few more weeks, the fatigue left. I was no longer blindsided by waves of weakness. My speech changed, meaning the words in my mouth. I no longer went around talking about my symptoms or the latest visit to the doctor. I stopped chasing a diagnosis, affirmation of my suspicions, or proof of my own sanity. Yeah, I had Lyme Disease, but there was life after Lyme, okay? Fuhgedaboudit.
At work, one of our precious teachers had died of breast cancer. There were worse things, all right?
One day, I realized that I had given Lyme no more place in my life. It was dramatic, but I was so busy living that I almost didn’t recognize the healing that had taken place. It was like Red said in The Shawshank Redemption: “Get busy living, or get busy dying.” I was living out I Peter 2:24, “By his stripes, ye were healed.” The healing had already happened. I had accepted Heaven’s view of the situation in the full light of what Jesus had already done. This was the key.
I still had no idea the extent to which prayer had gone out on my behalf.
My cousin in Maryland received healing from Lyme in a hands-on full-out healing service years before I contracted the disease. In a prescient moment, a church member prayed that Maggie’s family would be healed from “something that has followed your family for generations.” Before the first symptom hit me, someone had prayed that I would be healed from whatever condition makes my family genetically predisposed to Lyme’s autoimmune response.
Still, I’m convinced that if I had stayed on that couch and listened to my body, I would be dead or something like it. But I had no interest in a zombie kind of life, and I learned it wasn’t God’s plan either.
I learned that faith is a lot of walking out on ledges in dense fog. I had to learn to “see” differently.
That was the turning point.