Chronic lyme sufferers around the country are fighting back against damaging public and mainstream medical opinion that chronic lyme disease does not exist, as reported recently in the Chicago Tribune’s article “Chronic Lyme disease: A dubious diagnosis.” These long-term Lyme patients are using the two things they still have – their voices and their stories – in solidarity, publishing essays entitled “My Lyme disease is not the IDSA Lyme disease” as a rebuttal to this article, in blogs all over the Internet. Below you’ll find H’s story. She wishes to remain anonymous to protect her family, who have since come a long way in supporting her in her Lyme journey.
My doctors and I believe I’ve been infected since I was very young, six or seven years old. I exhibited daily symptoms but learned to live with them, thought them normal; in my child’s mind I concluded that constant nausea, depression, anxiety, and visual disturbances were a ubiquitous experience, part and parcel of being alive, and since no one else was complaining about them I must, indeed, be weak, hypochondriacal, as the doctors to whom my mother brought me insisted.
I should mention that I wasn’t prone to whining about my health for no reason. In fact, at age four, I contracted strep throat but never once told my mother my throat hurt. One day my temperature spiked to 105 degrees and she rushed me to the hospital. Scarlet fever. A simple strep infection advanced to a weeks-long illness, because I never once bothered to tell anyone I was in pain.
Throughout childhood my symptoms mounted, but I remained functional, busy, and successful in my endeavors. By any standard I was not lazy. I enrolled in honors classes at school and brought home As every semester. I was a dedicated violinist, practiced at least an hour every day, attended youth orchestra rehearsals and lessons every Saturday. I took art classes, piano lessons, studied French horn, was involved in extra curricular math clubs, choirs, Girl Scouts, gymnastics, and dance classes. Eventually it was clear I was over-committed and costing my mother a fortune, so she insisted I pare down. I chose violin. In high school my individual practice expanded to three hours daily, and I attended an arts school that required my time there span from 8 am to 4 pm. I loved every second of it.
Each year my symptoms worsened, symptoms I’d convinced myself (with the help of several doctors) were ‘all in my head,’ but it wasn’t until my senior year of college that they began interfering with my life and functionality. In fact, I clearly remember one morning earlier in my college career – my sophomore year, perhaps – when I awoke feeling more nauseous than usual, vomited into the trash can on the way out the dorm, and continued walking to class as though nothing had happened.
Senior year, however, my body decided to fight back. Suddenly, for no discernible reason at all, I was unable to sleep. I’m not talking typical insomnia, don’t mean trouble falling or staying asleep. I mean for three consecutive weeks I received not one minute of sleep, day or night. I lay awake and sobbed, begged my body to sleep, drugged it with prescribed Ambien only to hallucinate and swear the drug off for life, tried valerian root and bedtime teas and Benadryl and meditation and hypnosis and relaxation tapes. Nothing helped. Complete sleep deprivation is a particular torture unlike any I’d known or imagined previously. There is a reason prisoners of war are often refused sleep, forced awake for days, weeks on end. I grew suicidal. But really, I didn’t want to die. I wanted to sleep.
Nearly four weeks into the inexorable sleep deprivation daymare of 2002, I trudged to the subway and found myself in a Manhattan emergency room, trembling and cold. I think I might hurt myself. Badly. I can’t sleep, I said, dazed. They checked me into the hospital psychiatric ward, where I stayed for two weeks. After some trial and error they found a drug combination that knocked me out for a few hours each night, and I was released. Everything returned to normal. Or so I thought.
Two months later, in early July, I woke to searing lower right abdominal pain. I shot up with a start, clutched my side, tried to breathe. Each breath threw knives into my ribs. I staggered to the phone and dialed a nurse line. ER, right away, I was instructed. Sounds like appendicitis. I found myself back in that same emergency room, this time biting back tears from pain and informing the registration nurse I thought I had appendicitis. As I sat in the waiting room, the pain crawled to the upper quadrant of my abdomen and intensified at least 10-fold. By the time I saw a doctor I was sobbing and wailing in pain, which I’d never before done in my life. The appendicitis test was negative. After pleading with the nurse for hours, barely able to speak for the pain, she shoved a morphine drip into my arm. It hardly took the edge off. They accused me of faking it, but I spiked a fever and puked, so I was reluctantly admitted.
There was no diagnosis. Probably an ulcer, they shrugged, though I never received a test for H. pylori. After three days the intolerable, stabbing pain subsided, left a warm throbbing in its wake. I was given Nexium and sent on my way.
My stomach and digestion never recovered. I vomited almost monthly, sometimes more often than that, for seemingly no reason at all. I spent hours in the bathroom. I couldn’t hold weight; everything I ate made me ill. I paid it little mind, tried to return to my life. Finished school, got a degree. Worked various jobs. Moved cross country for love.
In 2004, everything, including my body, fell apart. I could no longer hold full-time, steady work. I was diagnosed with IBS and anxiety disorder. My panic grew insurmountable, leaving the house a Herculean task. Just opening the door to the outside sent a surge of cold fear rushing through me. The panic flattened me, was roadkill crushing my chest. I couldn’t breathe. I couldn’t handle life. I kept throwing up. I was dropping weight fast. My bladder and kidneys stopped working correctly. I was diagnosed with interstitial cystitis. I cried all the time. I thought I was going insane.
At this point, after a lifetime of indoctrination, I remained convinced all my symptoms were caused by panic and depression. It didn’t occur to me that perhaps my mental and emotional symptoms were manifestations of a biological disease process, that instead of my head making me sick, the illness inside me was affecting me neurologically & psychologically. I had it backwards, as did every single so-called medical professional I’d seen throughout my life.
Eventually it became clear I could no longer take care of myself. Getting out of bed was increasingly impossible. I couldn’t stand long enough to make myself food, and couldn’t eat when I did manage to prepare something. I began to have trouble walking, was dizzy & weak. I had to lie down after brushing my teeth. I was continually terrified, unable to stop sobbing. I shed pounds like snake skin, inched closer and closer to a weight I hadn’t seen since junior high school. I forgot to feed my cats. I forgot to feed myself. I didn’t know what day it was. As the days slipped by in a haze, it dawned on me that I was ill. Seriously ill. Something was very, very physically wrong with me. I set out to discover what that something was.
Doctors hadn’t helped me, so I turned to the internet. (I couldn’t leave my house for doctor appointments anyway.) I plugged every single symptom I had into Google, and voila, the first thing that came up was Lyme disease. I scoffed, almost dismissed it entirely. How could I have Lyme disease? I’d never seen a deer tick, never had a rash, only been camping a small handful of times. Besides, wasn’t Lyme like the flu? A few antibiotics and you’re fine? How on earth could Lyme disease do this? Out of curiosity, I clicked the link. And then I learned everything that we as Lyme patients know, but the medical establishment, the IDSA, flatly and insistently denies: how insidious this disease is. How difficult to detect and treat. That 50 percent of patients or more never recall a tick bite or rash. That deer ticks are often as small as the period at the end of this sentence. How Lyme and coinfections can mimic almost every chronic and neurological disease known to mankind. How I was sick. Seriously, legitimately, dangerously sick.
It fit. I knew it immediately, after reading about two paragraphs describing chronic Lyme. No question in my mind. No question in any cell of my body. After all these years, everything made sense. I was sick. I wasn’t weak. I wasn’t a hypochondriac. I had a serious neurological illness, a deeply entrenched infection of the brain, CNS, and every bodily organ. I had Lyme and coinfections.
I was too sick to travel alone from Portland, OR (where I lived at the time) to my family’s residence in Minnesota; my cousin flew out and met me, helped me get myself on the plane. I didn’t have enough energy or cognitive ability to pack my stuff, so I left my bedroom a disaster, apologized profusely to my landlord and roommates, and my incredibly kind roommate packed everything for me and shipped it to MN. I had to give away my beloved cats; I could no longer care for them. When I arrived at the airport in Minneapolis, dazed and dizzy and drained, I could see the concern on my mother’s face. I looked horrible. I was down to almost 90 pounds. My hair was greasy, scraggly, thinning. My face was ghost white, my eyes glassy and rimmed with black circles. I fell into her arms. I thought for sure she would help me, we would figure this out together. I assumed that with her help, I’d be okay. I was wrong.
I can’t blame my mother or my paternal grandparents (with whom I stayed) entirely, however. My family believes in doctors. They believe in Western medicine. When doctors said there was nothing physically wrong with me, my mother believed them. Doctors were god-like. Gurus. They had the answers.
I told my family I knew I had Lyme. Late-stage Lyme. Chronic. A severe case. They didn’t buy it. I finally annoyed my family doctor enough that she agreed to send my blood to a specialty lab, a lab the Tribune article calls unreliable. It’s true, their Lyme test, like every Lyme test, is unreliable: false negatives and inconclusive results abound. However, my test was not inconclusive or negative. My test was positive, so positive it met the stringent CDC criteria for a Lyme disease case. For some reason, however, my case was never reported.
My family doctor called me, surprised, and said ‘well, that’s strange, your Lyme test came back positive.’ She offered to prescribe 30 days of doxycycline, the standard treatment dictated by the IDSA. I declined.
Let me explain why: a couple weeks after I’d returned to Minnesota, I grew suddenly sicker. It didn’t seem possible that I could fall more ill than I already was, but I did. One night I was reading a novel by Toni Morrison before sleep; the next morning I picked up the same book and couldn’t read it, couldn’t decipher the language. I lost the ability to read. I could almost read the words, say them in my head, but I hadn’t the first clue what they meant. I started crying uncontrollably. I was terrified. Terrified of what was happening in my body and brain, terrified because my family didn’t believe me and I didn’t know how I was going to get the help I needed. How was I going to access treatment? When I lost the ability to read, I also lost the ability to write. I couldn’t think or carry on a coherent conversation. My brain felt stuffed to the brim with hardening cement, 24/7, every moment of every day; my body felt filled with poison. Sleep was the only respite. I was too dizzy and weak to lift myself from bed. I crawled to the bathroom. I got lost in my grandparents’ home, the same home they’d lived in since before I was born. I remember one morning in particular: I limped to the bathroom across the hall, clutching walls as I went to keep myself from falling. When I stepped into the shower, I couldn’t figure out how to turn the water on. I had no idea what to do with the knob on the shower wall. It looked like something I’d never seen before, something strange and foreign and unnamable. I pressed it. I hit it. I collapsed onto the shower floor and wept.
In addition to extreme cognitive impairment, my symptoms in late 2004 included: constant severe nausea, inability to digest food, diarrhea several times per day, hair loss, weakness in hands & legs (difficulty walking – I fell constantly – and trouble holding things in my hands, like silverware), numbness and tingling in extremities, continuous panic and crying, tendon pain, unrelenting headaches, extreme difficulty breathing, polyuria (my kidneys couldn’t hold water and I peed out way more than I took in), insomnia, muscle jerking and twitching, petit mal seizures, trembling, shaking, dizziness, central nervous system/sensory overload (I couldn’t tolerate lights or noises or smells or crowds, couldn’t even tolerate the sound of someone talking to me), inability to lift my head from my pillow for more than a minute. The list is endless, really. From the research I’d done before I lost the ability to read and comprehend, I knew I needed a Lyme-literate doctor. I knew I needed years of treatment, that my case leaned heavily toward the Most Severe end of the spectrum. The short course of doxycycline my clueless family doctor prescribed was a joke, wouldn’t come close.
I pleaded with my family. I offered my positive Lyme test as proof. They parroted the doctors: “it was probably a false positive” and “Lyme can’t do this.” Then their ultimate conclusion, supported by every doctor to whom they took me: “yes, you’re very sick. But it’s all in your head. You’re making yourself sick with your mind.”
I knew they were wrong. I knew I was ill, deathly ill, maybe, but there was no convincing them. In my delirious stupor I somehow made an appointment with a Lyme-literate doctor in Missouri, the closest LLMD to Minnesota at the time. How I was going to make it to Missouri when I couldn’t even reach the front door was a mystery to me, but I was determined. I enlisted my best friend for help. She planned to fly from Boston to Minneapolis and essentially carry me all the way to Missouri. That trip never materialized.
One morning, while I was attempting to lift myself from bed, my grandparents entered my room and said calmly, “come on, get up. We’re going to the hospital.” I thought they were referring to my episode the previous night, when I woke up unable to draw a breath. I sat bolt upright in bed, gasped, tried to breathe, couldn’t, could only draw the shallowest forced inhales, like I was breathing through a fancy-drink curlicue straw. I hobbled to my grandparents’ room and begged them to take me to the ER. They refused, said I was just panicking. I crawled back to bed, and after an hour and a half or so of this, drenched in sweat, gasping for air, my breathing finally returned to me and I fell asleep.
But no, they weren’t referring to my breathing episode. Half an hour later, five or ten burly male EMTs rushed into the house, grabbed me, strapped me to a gurney, and wheeled me outside into a waiting ambulance. I screamed and cried and begged them to let me go. I begged them for water. They refused.
By the time we arrived at the hospital, I was calmer. I thought, okay, no problem, I’ll just explain that I’m sick and not suicidal, not crazy. I look sick. I’m 85 pounds for godsake. They’ll have to believe me. My appointment with the Missouri LLMD was in a mere two days. I couldn’t be held in a psych ward, I had to go to Missouri. I had to save my own life.
They admitted me, of course, but still I remained as calm as possible. I’ll talk to the psychiatrist in the morning. This is all a misunderstanding and they’ll let me go.
Suffice to say things didn’t turn out as planned. On forced admittance into the hospital psych ward, they confiscated all the herbs I was taking in attempt to start treating myself for the infections that were ravaging my body and brain. The psychiatrist didn’t believe a word that left my mouth. She, like the Tribune article, didn’t ‘believe’ in chronic Lyme. She didn’t care about my positive Lyme test. She didn’t care about my upcoming doctor appointment. Instead, she drugged me on dangerous antipsychotics (a drug they only give treatment-resistant schizophrenics), diagnosed me somatically delusional, and had the court commit me to six months of psychiatric imprisonment.
I was terrified. I had no idea how I’d get out of the hospital alive. Every symptom of my illness the psychiatrist and nurses charted as evidence of my ‘delusion,’ of my supposed insanity. The fact that I could only lift myself from bed to force-feed a bit of food into my mouth was evidence I was ‘depressed’ and ‘noncompliant, not evidence of my dizziness, that being upright made my head spin, made me run to the bathroom and dry heave. My weight (85 pounds and dropping) was ‘evidence’ of past disordered eating, of anorexia. No concern was given to my intractable nausea or the fact that I physically couldn’t keep any food inside my body.
Those months are blurry in my memory. I remember the court hearing. How they took me in a barricaded police van in pajamas, how I could smell myself, how I’d been too sick to shower for about a week. How I knew I looked ‘crazy;” the stringy, unkempt hair, the griminess, the lack of concern for my appearance. (Let me assure you that when you’re sick enough, you don’t, can’t, give one ounce of care to your appearance or hygiene. This, coming from someone whose usual default is a daily shower. Every ounce of my energy was being used up simply by existing, by not dying.) My parents were both there. My divorced parents who despised each other, who hadn’t been in the same room together since I was about three. They were there to witness a judge declaring me crazy. I couldn’t fight. I had an appointed lawyer, but it was hopeless. I couldn’t lift my head for the dizziness, the fluorescent lights. I sat there, cheek resting on the cool, fake wooden table, wondering if I would make it to the outside world alive.
The verdict returned, surprising to no one, least of all me: six months state commitment. Six months. How would my body survive six more months without Lyme treatment? I tried one more time. I begged my psychiatrist to listen to me. Her response was to assign an Infectious Disease doctor to my case, a doctor trained by the IDSA. He came into my room one afternoon, asked if my joints hurt, felt my knees for all of two seconds, and declared that I didn’t have Lyme. He took my blood and ran an ELISA test, which has a 65 percent false negative rate. The test, of course, came back negative. It was official. I was ‘delusional.’
I recall the cruel clarity of my realization that the only way I would ever be released was if I pretended to act healthy. If I said not one word about Lyme or being sick (I tried the ‘maybe I have Chronic Fatigue Syndrome’ approach with the psychiatrist to see if she liked that idea better than Lyme, but it was futile; according to her, every single patient with CFS was faking it or crazy, just like me), maybe they would let me go. This was harder than it sounds, as my symptoms prevented me from sitting upright without the world spinning and distorting around me. I made myself sit upright anyway. I forced myself from bed, hobbled with a smile to the TV room, watched TV with fellow patients. Leaned back and rested my head on the chair because I couldn’t hold it up on my own. The nurses nodded with approval and scribbled in my chart. I dragged myself to groups and art therapy, often leaving to dry heave in the bathroom; I told the group leaders I just had to pee. I came back smiling. I can’t explain the sheer amount of physical and mental energy it took to act even marginally ‘not sick.’ I’m sure in the process I made myself sicker. But I had no other choice.
My other strategy was prayer. I am not a religious person. In the past few years I’ve become my own brand of spiritual, but at the time prayer was entirely foreign to me. I didn’t know what else to do. I prayed constantly: in groups, while trying to eat, before sleep, while I couldn’t sleep. When my blood pressure reached 155/110 and my heart skyrocketed to 160 beats per minute, and they blamed it on anxiety. I prayed. I prayed and prayed and prayed. I pretended. I learned to smile through excruciating pain, weakness, dizziness, confusion. I learned to walk while lightly trailing my fingers against walls for balance. It was hardly noticeable. I kept praying.
My strategy worked. Somehow, it worked, and my body didn’t quit on me. After four and a half months, they transferred me to the ward meant for patients soon to be released. The first time I met with my new assigned psychiatrist, I hardly looked at him. He asked for my story, and I shrugged. He said he needed to hear it from me. Okay, I replied, but you’re not going to believe me. I didn’t use the word “Lyme.” I simply said I’m sick, really physically sick, but I’ve been diagnosed delusional and no one believes I have a physical illness. He looked at me in a way no one had looked at me in months. I didn’t understand his expression, until I realized it signified listening. I believe you, he said quietly. What? Was he kidding? I stared at him in utter shock. I mean, it’s obvious. You look sick. You don’t sound at all like someone who’s delusional. I’ve seen delusional, and I’ve seen seriously, physically ill. You’re the latter. I was flabbergasted. I don’t think I said a word in response. He apologized on behalf of his profession. I’ll have you out by the end of the week, he promised. And he did.
I got back on Lyme treatment immediately, found a doctor closer to home. I got better. I came back from the dead, essentially, lived two good years of near-remission. But these pathogens are stealthy. Like many chronic Lyme patients, I was infected not only with Borrelia, the bacteria that causes Lyme, but also myriad coinfections, viruses, parasites. They came back out to play when I started neglecting my self-care in 2007. Since then I’ve been on and off Lyme treatment, depending on my functionality and financial resources. Treatment has kept me from declining back to the near-catatonic state of late 2004 and early 2005. Within the last year, since I’ve been in steady, uninterrupted treatment again, I’ve seen improvement. I’m still sick, but my body has been fighting these illnesses for decades. It’s a miracle I’m alive at all. I have enormous hope for future wellness, for leaving illness firmly behind in my past.
I’m only alive thanks to some divine miracle and the treatment of brave doctors and practitioners who recognize my pain, who treat me as a whole person, not a series of numbers on lab paper. I can write this story for you to read. I can edit it, read it myself. I can take care of myself, feed my cats. I know where I am. I know my name. I can eat. I weigh 115 pounds now, which at 5’ 3’’ is considered ‘normal.’ My body still struggles daily, but I thank it, and the courageous doctors who’ve cared for me since 2007, for every breath.
Dear writers of the Tribune article:
Your shortsighted, fact-devoid opinion is the reason my family didn’t believe I was sick when I was clearly dying right in front of their eyes. True, they made a horrible mistake, but that mistake rooted and grew in you. You are its seed, you give it water and life. Your closed minds and those of the IDSA are why I have a persistent and unruly case of PTSD from what I endured at my very sickest, when I needed help, support, love, and critical medical care the most.
You call my diagnosis dubious. You say I’m not really sick, that my aches and pains are commonplace. I don’t know any healthy person who experiences seizures, gets intractably dizzy from being upright, can’t regulate their blood pressure or pulse, whose hair falls out in clumps. I certainly don’t know any healthy person who wakes up one day and discovers she’s lost the ability to read. This isn’t a headache or a sore knee. It’s an insidious, multisystemic, neurological soup of infections. it’s an immune system at breaking point. Lyme disease is a misnomer. I have Lyme, yes. But Lyme itself is only one pathogenic organism in a huge vat of infections that brought me, literally, to my knees.
Lyme and its cohorts avoid oxygenated places. That is why they hide in the joints, tissues, CNS, and brain, why blood tests often fail to pick up their presence. These bacteria are intelligent, capable of evading the host immune system and onslaughts of antibiotics. Tell me, in all honesty, how the idea that a month of low-dose doxycycline can eradicate multiple infections which have spread and entrenched themselves throughout every organ & crevice of the body, makes any logical sense. Acne patients are routinely prescribed antibiotics for years on end, yet a potentially fatal neurological infection is worthy of only 30 days of treatment? Use your brains. Open them. Listen. Pry apart the clutch of your hearts. People are sick, refused treatment, dismissed as ‘crazy,’ left to die. Doctors who wish to help us risk their licenses by upholding the Hippocratic oath. Something is terribly wrong here, and instead of blaming those who are sick and fighting with every ounce of their waning strength to survive, how about employing a wider lens? There is a story in this. You haven’t told it.
read other Lyme stories and Tribune rebuttals:
Candice | Ashley | Andrew | Kim | Molly | Brooke | Alix | Eric | Kenneth | Lydia | sixgoofykids | Dawn | Kim T | Alyson | Brandi | fivelymiesandababy | Jenna | Joanne | Sharon | Marla | Abigail | LymeSouthAfrica