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 Story
by H
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
photo credit: Lyme Tick © Rolf Aasa | Dreamstime.com
you tell my story. Oh how I empathize and sympathize. Only I had read about stories like yours, where people are dismissed and end up in psych wards. I had read enough prior to my symptoms getting out of hand that I knew I needed to watch out for this sort of mistreatment. I started from the beginning (of what seemed like the end) keeping my symptoms mostly to myself, putting on a happy face when I could barely function, stumbling in to work, fingers grazing the walls for stability, to sit at my desk in a catatonic fashion doing absolutely no work day after day. I lied. I lied to my family, my coworkers, boss, friends. Only my boyfriend had a glimpse of my reality, and still I hid a lot of it from him. What a shame that we have to do that. I knew I did not want to end up a psych case, and could not deal with the dismissal and doubt of family and friends. I didn’t feel strong enough to deal with all the doubt. My mom doubted me, so I stopped sharing with her. My boyfriend supported me and believed in me and I was able to find a doctor and regain my health.
I’m so sorry you, and so many others have had to travel down this road, dealing with a psychiatric diagnosis and time in a psych hospital when what you really needed was medical attention and someone to care and support you.
It’s sickening how many suffer and are mistreated this way. Thank you for speaking up and sharing your story. Someday, the world will wake up.
My son was 8 when we saw the rash. Knew right away what it was. He tested positive and given abx and steroids per CDC guidelines. By 7th grade, he was having every neurological symptom and I was told he was schizophrenic but I knew it was late stage Lyme. No one believed even his father didn’t believe. He sided with the MD’s and I was an over zealous mother. By 8 th grade, he began a steady decline- words evaded him. His ability to function with his school work all but gone then we found a LLMD. Dr R saved my son’s life- plain and simple. By 10th grade he was able to return to school full time. The right abx for the duration of symptoms helped him regain his life.
So
BRAVO for writing your story.
What a tragic experience you have had but sadly not alone in the neglect you experienced at your doctors hands.
My own story was nothing compared to yours but nevertheless at my worst I wanted my life to end.
Now nearly 100% recovered I can again enjoy good health and my life but no thanks to the IDSA.
H,
What a harrowing story of your symptoms, mistreatment, and eventual triumph. I at first looked at the length and thought I wouldn’t have time to read it through, but I stuck there and was riveted, just reading, reading. Your descriptions are so literary and poetic and so NOT something that could be made up. I hope you continue to recover and that we Lyme patients get all the recognition and support we deserve for what others have put us through. Sometimes others’ treatment of us is worse than the disease itself.
Best,
Alix
SpiroChicks Co-founder
hi everyone,
thank you so much for your kind responses. writing my story was extremely difficult, the hardest thing i’ve ever written by far. at first i wasn’t sure it was the right decision, because the next couple days i couldn’t stop reliving the trauma of everything. it was awful. but now that i’ve shared it, and people have responded in this beautiful, supportive way, i feel better. lighter. like some of the weight of what happened to me has been lifted. like i don’t have to carry it alone anymore.
so thank you.
<3
I have lived 6 months out of every year, every weekend and vacations in two lovely cottages in the woods on the Susquehanna river since the age of 5. My parents, then my husband and I bought a cottage. (I am 66) Ticks were nothing (or so I thought) I had well over 100 + infestations. As a teenager, I was diagnosed with Infectious Mono and hospitalized with bizarre symptoms and a temp of 103, swollen glands, and history of repetitive strep throats, the edema enlarging my uvula that I could barely speak. When I was in nurses training, they created a vaccine from my own tissue that was injected into my own body over a series of 1 year while in training. At the age of 40, I became so ill my PCP made a house call. Stiff neck, swollen glands, sore throat, chills, fever of 103, and a migraine so severe that I could scarcely lift my head off the pillow. Treated with 12 days of antibiotics, I was well- or so I thought. 3 months later, I began with swollen joints, pain in those joints, unrelenting migraine headaches, muscle twitching, severe insomnia, and much more. I had to stop my managment job at the hospital. A Rheumatologist did all testing, including for lyme, and everything was negative. The first diagnosis was inflammatory arthritis, then reactive arthritis, then “atypical” Rheumatoid Arthritis, and I was treated for 15 years as I became more symptomatic, and progressively worse. I was on Prenisone for long periods, a “no no” with LD, causing exacerbation of the disease process. The last time I walked out of this Dr.’s office, never to return, he said: “I think you and your husband probably due have lyme disease, which I mentioned to every Dr. whose specialty ended in ologist, because all systems were involved, along with cardiac, my eyes, joints and CNS abnormalites. Even though I LIVE IN MY BODY, my self-diagnosis fell upon deaf ears. This bacterial infection has viciously attacked my joints, necessitating 15 surgeries (4 THR, 1TKR, and another needed, plus wrists, shoulders- mass joint destruction in every joint of my body!!! I have Neurolyme, including white matter lesions in my brain, confirmed by an MRI. Do you actually believe I would lie? If you lived in my body or the body of another lyme sufferer for one week, you would be a believer- No DOUBT!!!! We are not hypochondriacs? We are not mentally disturbed!!! Distraught- yes, when our herx’s are unbearable? To the newspapers that write these inflammatory articles, do you know what a herx means and involves to those of us who experience them monthly? Do you believe the millions of people in 50 states, and 65 countries are mentally deranged!!!!???? Have you not taken the time to read the scientific evidence that wonderful researchers are collecting and validating through important data? Did you know this very year that 13 sub-types of Lyme have been identified? Do you have a clue how this devastating bacterial infection affects our children- the future of America? They will carry this unfortunate burden for the next 60 years because of denial, blatant publishing of inflammatory untruths because YOU DO NOT KNOW, OR YOU CHOOSE TO LOOK AWAY. You just don’t get it, but I’ve got it. I welcome anyone to review my medical records to validate all that I have shared, and to interview me, or use me as a “guinea” pig for research, after you share the risks of what you wish to do so that I may make an informed choice. But, you insult the intelligence of my brothers and sisters who have lyme and other TBD’s, and that is humiliating and unkind. Though I would wish this disease on no one, if I could exchange my body for your healthy one, I would willingly take one week of no challenges, no pain. Could you/would you even be able to endure one week? I wonder. And as for medications, what about the toxic drugs with potentially serious side effects involving almost every disease? If you want to know the serious drugs I put into my system for 15 years for a disease I did not have, please ask! I’ll take my risks, because as a professional, I know that if I want to live and live as fully as possible, though my quality of life has been altered significantly, I must take antibiotics. I choose quality, not quantity, though both are desirable. May those that publish and disbelieve in lyme/chronic lyme and other TBD’s learn to live in peace, because the lyme community certainly obtains little peace or relief, unless diagnosed immediately, and yes- treated with long term antibiotics so that it does not affect systems and organs. “There are times when we have to hurt through a situation and when this happens, the choice is not whether to hurt or not to hurt, but what to do while we are hurting.” Reality: We don’t have to hurt unbearably if all folks (Doctors, legislators, all humankind) would “get up to snuff” with all the groundbreaking new research that has been done with much more to come.
People are being injured, harmed by this denial. I wonder if we are possibly experiencing an element of willful concealment in the medical community, government, CDC, IDSA?? This DENIAL is unconscionable to all of us with LYME. Thank you to all the LLMDS (many of whom have lyme themselves) and to all scientists, advocates, professionals and non-professionals who are making a difference. I have re-written my will and I am offering my body for lyme research. If you want to do some now, are you up for the challenge to uncover what you will find? Then, may I depend on your honesty to ensure the truth is published in every state, every country- with an apology I might add? I’m up for the task- are you? I could not feel much worse than I do!!! Linda Olley, R.N., Leader of the Harrisburg Area Lyme Support Group in Pa.
Linda, my heart goes out to you and all the others who have a long history of suffering, mostly due to the ignorance of doctors. I pray for the day we are all respected for our body wisdom and listened to by our physicians. So much damage could have been prevented. Sending prayers and healing to you and everyone else who has bravely shared their story. xxx
Thank you for sharing your unbelievably nightmarish journey with LD. As hard as it was for you to tell your story, it was equally hard to hear of anyone having to endure such pain & ill health & then imagine what you also had to endure with these ignorant, close-minded, disbelieving medical professionals, unable to open their minds to stay current, diagnose & cause no harm. I want to say I am so sorry you had to go through such an ordeal and for such a long time without family support & understanding. You really fought for yourself, prayed and never gave up; which is what ultimately saved you. You are one amazing survivor!!!!
I’m also from Minnesota and became neurologically ill from toxic mold exposure in 1996 & you should see the junk phrases of “somatic, neurotic, psychotic, bi-polar in my records from NON Psycologists!!! I have mcs from the on-going mycotoxins and suffer somewhat similiarly, but I’ve also found the MD’s who know, care & treat these environmental-induced illnesses. Mn doesn’t have one recent fully-certified MD from the American Academy of Environmental & Occupational Medicine. I’ve seen 4-5 Enviro Docs while traveling from CA & TX to FLA & AZ.
Here there is little interest in toxins causing illness, chronic Lyme & MCS/Mold injury.. etc, especially here with the Mayo, as the focus is mainly drugs, devices & surgery & if they aren’t the fix you need; then something is wrong with YOU, of course!! Blame the victim is the only solution they have when they are unwilling to educate themselves, open their minds & learn new therapies. It’s also NOT where the money is as well!!!
Take care & wishing you a continued recovery now and in the future. (You probably found Dr. V in Winona, I hope.) Best Wishes.
HL
In response to the article “Salvos launched in Lyme Disease”. It baffles me to think who is behind all this logic in the Lyme dispute. Health insurance companies, politicians, lawyers, the CDC? Have any of those people or their loved ones ever suffered from day after day of being ill, running from doctor to doctor trying to get an answer?
I can’t believe we are wasting billions of dollars allowing people to go from doctor to doctor, have test after test, surgeries, and be put on an enormous amount of medication that is not needed when the solution is so simple. Educate these professionals on Lyme’s Disease. We are willing to spend all these dollars searching, when if they were educated and were treating the correct diagnoses from the start we would save an enormous amount of money. Plus the dignity of a person trying to lead a normal life without feeling sick day after day.
In reality how much can long-term antibiotics cost compared to ignoring Lymes and having ill patients on a wild goose chase for years. Or, is this a political scam for extra income for doctors, the CDC, etc.? Antibiotics are relatively cheap compared to the cost of searching and searching for an answer. If the CDC and others don’t like long-term antibiotic use as a treatment than find something that works. But, don’t just ignore and downplay Lymes as a disease.
I myself have been sick for at least 8 years. I’ve been to 15 to 20 different doctors. I’ve had numerous procedures, test and surgeries. Which have all given me no answers and I continue to feel ill every single day of my life for years. And, NO it is NOT in my head, I am NOT crazy. I am sick and I want a normal life. I want to raise my kids and enjoy life. I force myself to do the best I can. I’m on disability as I just couldn’t work and carry on the load of raising a family with all of my health issues. In short, I urinate 25 to 45 times a day, catheterize myself daily to control pain, suffer severe IBS and constipation with abdominal pain. Have TMJ, eye twitching, headaches, fatigue, sinus problems with a severe sensitivity to smells and light. My neck creeks, cracks and is so stiff. My shoulder kills with pain. I have fevers often, swollen glands, chills, rashes and repeatedly am being treated for one thing or another. And, my heart has acted up and deteriorated.
Now, I am an RN and if I heard a patient tell me those symptoms and looked at the full picture. And, assuming I were educated about Lymes Disease. A light would have went on instantly, “she has Lyme’s”. In stead we are willing to pay the cost of a urologist, gastroenterologist, ENT, allergist, orthodontist, neurologist, orthopod, immunologist, cardiologist and on and on. Each of which did a full work-up and can’t explain why these symptoms are occurring. So they try drugs, procedures, surgeries, test after test and on and on. Senseless, totally senseless. And, I still feel miserable every single day of my life. Talk about a missed diagnoses, a total waste of a good person’s life and an enormous amount of money in the good doctor’s pocket. That in short is the full picture.
I would trade anyone a week in my life. I’m sure they would be at the ER door several times during that week. Let’s wake-up and recognize Lymes Disease. EDUCATE, EDUCATE, EDUCATE the medical field so they can recognize and treat patients suffering with Lymes in it’s early stages. So people don’t have to suffer needlessly with Chronic Lymes. And, those that have Chronic Lymes can be treated properly so they can have a full-filling life. I desperately want to get back to work.
I might also add. That regardless of my positive test results from IGENEX labs with 6 bands in Igm being positve I have still not been seen by a doctor. I have called and faxed my test results numerous times to my Immunologist in Iowa City and still have not received a call from her. And, this positive result does meet CDC criteria as being positive for Lymes. So, I guess I will have to wait until the end of January to see a ILADS doctor who hopefully is willing to attempt to give me some answers and treat me as a person and a patient in this battle. It is so hard to believe we allow this type of practice to go on in the medical field. But, won’t allow patients to be treated by ILADS doctors who truly want to help their patients.
Thank you for sharing your unbelievably nightmarish journey with LD. As hard as it was for you to tell your story, it was equally hard to hear of anyone having to endure such pain & ill health & then imagine what you also had to endure with these ignorant, close-minded, disbelieving medical professionals, unable to open their minds to stay current, diagnose & cause no harm. I want to say I am so sorry you had to go through such an ordeal and for such a long time without family support & understanding. You really fought for yourself, prayed and never gave up; which is what ultimately saved you. You are one amazing survivor!!!! I’m also from Minnesota and became neurologically ill from toxic mold exposure in 1996 & you should see the junk phrases of “somatic, neurotic, psychotic, bi-polar in my records from NON Psycologists!!! I have mcs from the on-going mycotoxins and suffer somewhat similiarly, but I’ve also found the MD’s who know, care & treat these environmental-induced illnesses. Mn doesn’t have one recent fully-certified MD from the American Academy of Environmental & Occupational Medicine. I’ve seen 4-5 Enviro Docs while traveling from CA & TX to FLA & AZ. Here there is little interest in toxins causing illness, chronic Lyme & MCS/Mold injury.. etc, especially here with the Mayo, as the focus is mainly drugs, devices & surgery & if they aren’t the fix you need; then something is wrong with YOU, of course!! Blame the victim is the only solution they have when they are unwilling to educate themselves, open their minds & learn new therapies. It’s also NOT where the money is as well!!! Take care & wishing you a continued recovery now and in the future. (You probably found Dr. V in Winona, I hope.) Best Wishes. HL
Wow, just wow..
I too have Lyme disease, but i’m no where near as bad as you are, i’ve had it for almost 8 years, (i just turned 19) found out after about 6, and been on treatment since, i’ve had horrible pain in both my knees for as long as i can remember, and it’s only gotten worse, had to quit soccer practice, and eventually stop doing any sports what so ever just because of pain, when i discovered what was actually bothering me i had to quit school because of the treatment which made me feel worse, i’m nauseous a lot, my father and stepmother think this disease is a joke, my mother is the only person in the world that knows how i feel because she has it too (thank god i’m not alone)
My symptoms are painful heartbeats, dizziness, chest pains, muscle pains, headaches, extreme jointpain, stiff neck pretty much all the time, extreme fatigue, constant feeling of being exhausted, problems sleeping (it’s 5.40 in the morning over here right now and im awake..) and when i get a good nights sleep i still feel just as tired when i wake up, sleepy all day long (but still can’t sleep when i lay down)
And you know that electric shock feeling you get when you hit your elbow? I have a mild version of that feeling in the skeleton in my arms CONSTANTLY, it’s very disturbing, every single bone in my body feels fragile!
I also forget names very often, like someone i met daily about a year ago, if i meet them now i usually have problems remembering their name, which can be kind of embarrassing when they’re shouting out your name the second they see you.
Right now i’m on doxycycline, clarithromycin and plaquenil to fight all the 3 areas lyme disease hides in your body. Blood, intracellularly and in capsuls. I believe if you fight these 3 areas with high doses over a long time, eating the right food, consuming as little sugar as possible, you WILL get 100% healthy, it might take a year or two on heavy medications, but if you kill it in all the areas it hides it will surrender eventually and you’ll win the battle for your life! Stay strong, get well and keep the spirit up! Let’s defeat this damn thing :D
I just want to reach out and give you the biggest hug every. My god, what you have been through. Your spirit is so strong for you to have lived through all of this.
The body and mind is such a complex thing and it can fool the best of us. I have had CFS since I was 20, and I am now 45. Each year is different, but the last few have been hard. Entering menopause doesn’t help, but I am thinking more and more that I may have Lyme. Yes I have done the tests and sent them to the U.S. and I have a great environmental doctor. I am a puzzle as I don’t seem to get well and can’t tolerate a lot of very gentle treatments, vitamins, IV’s etc. You give me strength to keep fighting and trying to figure this all out.
The one thing I am so proud of is that due to all my food allergies and while being on disability I have shared all my recipes in my cookbook called Finally….Food I Can Eat which was published 2 years ago. I want to write another cookbook but these days my energy is so low I wonder how I did the first one. But we never know what is around the corner for us so I will keep praying for it to come and get better.
All the best to you and others like us who suffer with chronic illness.
All of these stories…everyone of them..the same.. the suffering ..the denial from so called DRS..is this really America? The home of the Free? It is not the home i know.. i have had lyme disease since i was a little girl.. i have gone to over one hundred drs.. each telling me i had something different.. many making appts for the phychiatrist..and others laughing at me (yes drs and right in front of me with other drs)as a child i suffered many many illnesses.. 103-104 temps.. everyyear i was out of school from all the strept throats i had.. so sick.. panic attacks( from the nerological lyme) started when i was 23..and then the time where a rash broke out all over my body and a dr told me i had measles…really? i already had them when i was 7 doc!I continued to get worse and worse.. pain pain stiff neck.. could not think..i was so weak..i finally went to a dr and out of all the tests my test came back positive for lyme.. unfortunately for others they are not this fortunate… lyme disease is based on a clinical diagnosis.. because tests are inaccurate, but in some few cases such as mine they aren’t. But my diagnosis came so very late.. i suffer from so many things… i can’t concentrate.. i have cognitive problems.. i have severe colitis and IBS.. my muscles twitch and i have full legcramps that wake me up in the middle of the night scrambling to get out of bed (i can’t scramble fast) to relieve the cramp that has taken over my whole leg.. i have heart problems..i can’t see well… i stumble over my words.. i have pain so bad in my muscles and tendons an every part of my body when i only go out twice a month to the grocery store..i have had 3/4ths of my thyroid taken out because of cold nodules .. i have lower back pain.. i have severe scoliosis..my brain tingles and i am dizzy almost all the time.. right now as i type i am having heart palpitations.. i cannot go on with anymore of my problems.. there are many more i assure you.. and i guaratee you that i have chronic lyme and that 28 days on doxycycline won’t get me even near well!Lyme has taken my ability to spell.. to read to write to speak..my Father died from Lyme disease.. he had THE BULLS EYE RASH.. he was diagnosed with Alzheimers..no bode y will be downing the good drs that treat lyme if they themselves ever get this horrid disease! They will be begging for help.. and do you want them to turn a deaf ear to you? To look at you and say “you are crazy.. you do not have lyme.. or lyme does not exist in this state? How would you like to hear those words when you are feeling like every breath you take is your last?i hope you never do hear those words// my wish for you is to get better treatment than i received.. I hope the medical community will be kinder to you than they were to all of us..if you ever get this evil disease they call lyme…
Thank you for sharing your story…it reads like my husbands…the details, the psych wards, the ect treatments,, the pills, and the detail my doctors is so unreal it is frightening. I despise western medicine, hate all doctors, and would rather die at home. As a wife with a husband who had undiagnosed neurolyme for 20 yrs, he best your pain and your story literally reads like his even the parents he doesn’t talk to bc they called him mental. You and him will make it, never give up. However, there real needs to be a major movement on ousting doctors, drug companies, and the denial of Lyme. We also need to bring down the CDC and fda useless goons…much love Michelle