These stories talk about the harrowing Lyme disease.
The most common tick-borne disease in the Northern Hemisphere. If Lyme disease is left untreated, it can lead to debilitating sickness attacking the joints, heart and central nervous system. Unfortunately it's extremely difficult to diagnose.
By Trae Vassallo
The most embarrassing moment of my life: collapsing in front of all our CEOs at our annual CEO summit. That moment started a health nightmare for me. Most people do not talk about their illnesses publicly. They do not want to seem frail or broken. I am healthy again and mad as hell. So I am talking and I am talking loudly.
The medical system failed me. It told me I was a working mom in a high stress job with three kids, and that I should expect to feel like crap all the time if I really thought I could do it all.
As the years progressed, I went from having excruciating fatigue that required 10+ hours of sleep on the weekends (while being completely deprived of that “rested feeling”), the constant feeling like I had the flu combined with morning sickness, breathing difficulties, aching joints and piercing headaches, to ultimately degrading to the point where I was losing my vision, my voice and was beset with annoying muscle twitches. I went from being a healthy athletic mom to a shell of myself. It really hit me when my 11 year old told me I looked frail.
My diagnosis: Borrelia Burgdorferi (commonly known as Lyme), Erlichia Chaffeensis, Anaplasma Phagocytophilum, Mycoplasma Pneumoniae, and Bartonella. Turns out that Lyme is not just Lyme, it is typically accompanied by a whole grouping of diseases that work together to make it that much worse on the patient. I had previously met with many, many doctors in search of some relief. I tried a year of anti-virals for Chronic Fatigue with no avail. I tried 3 months of anti-fungals. Despite all these attempts to see what might help, no doctor would prescribe more than a week of antibiotics. And this was despite knowingly testing positive for Mycoplasma Pneumonia for at least 9 months.
The unfortunate thing is that I, and more importantly, my family suffered for seven years prior to this diagnosis. Most people had no idea what I was going through personally or at home. You do not drop dead from Lyme, instead, you decay over many years. Lyme symptoms look different from person to person depending on where the spirochete (the Lyme bacteria) decides to set up shop. Lyme can affect your digestive track, your nervous system, your coordination, and many other things.
The fear of prescribing antibiotics made them really hard to get. My doctor even told me that he did not want to prescribe antibiotics because I could get C-difficile. I do not want to belittle how horrible C-difficile is, but everything about my life was crumbling. Do I want to go blind or risk C-difficile? My doctor insisted that nothing going on in my system was from an infectious process. Furthermore, I was irritated by the fact that we give our cows and pigs antibiotics daily, yet I can’t get my doctor to see if that helps me.
Despite all of my frustration it was not my own motivation that caused me to seek out a Lyme-literate MD (known as an LLMD), it was my son. My son started regressing from the smart, caring 1st grader to a defiant kid who appeared to be losing his cognitive ability. Watching my child go through this was heart-wrenching. I tried everything. We became Gluten free, got rid of all artificial colors/flavors, changed all the product in our home to all natural. I knew something was not right, a mother’s sense. While my pediatrician brushed my concerns off, I kept pushing. I brought him to a holistic doctor who diagnosed him with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). PANDAS is a strep infection that can cause a whole host of behavioral and nervous system issues. We gave him a course of antibiotics, but the strep did not go away. In meeting with another family suffering through a similar experience, the mother handed me a paper that linked PANDAS to Lyme. I sought out a Lyme Literate MD (or LLMD) to have him checked out. On a whim, I decided to test myself since I was there.
We were both positive for Lyme. I was duly warned, by my pediatrician and my doctor, that LLMDs are “quacks.” Having exhausted all my other options, I decided to take a data driven approach. I knew the tests were not 100% accurate, but I had something. So I paid meticulous attention to symptoms and how they changed with treatment. I even went so far as to start and then stop treatment to see if there was simply a placebo effect in place. It was this test that pushed me over the edge from a skeptic with no options, to a believer. After one month of antibiotics, it took only one week of stopping them to see the symptoms start to creep back. My vision that had returned, rapidly declined, my gums that were finally healthy again, started to bleed. My son went from calm to agitated and vibrating with too much energy. After a week, I could not take it any longer and we re-started our medication.
I am over the moon that we are both back to our old, happy selves thanks to some incredible forward thinking treatment by doctors, many of whom currently have to risk their licenses to treat this illness. My son and I are fortunately part of the 75% of people for whom the treatment appears to work.
Why is this so hard? The insidious thing is that current testing is simply not effective. I am not a doctor and I am not a scientist. I am a technology savvy, advocate mom. When I learned that the standard Lyme test was based on one genetically modified specimen of Lyme that was not even from an infected human, it was pretty obvious to me there was a reason that Lyme appears to be rare. There are many, many strains of Lyme with California Lyme strain being different from the Southern and Eastern strains. And Lyme evades the immune system by mixing up its genetic make-up. That makes Lyme very difficult to diagnose. It also leaves the blood in search of tissues in the body to invade. Rarely do tests find spirochetes (the type of Lyme bacteria) in blood, but they are in the tissues. Lyme is not new, it was recently sequenced out of a prehistoric caveman. So why is our medical system hiding its head and putting the many ill people with Lyme on an endless journey from doctor to doctor without a diagnosis?
Part of this is the outdated information disseminated by the CDC and the IDSA. It clearly says on the CDC website that: “…. this disease does not occur nationwide and is concentrated heavily in the northeast and upper Midwest.” A local foundation focused on Lyme has found that 5% of the ticks in the San Francisco bay area test positive for Lyme. Yet many people believe that Lyme doesn’t exist in California. The CDC goes on to explain that: “The National Institutes of Health (NIH) has funded several studies on the treatment of Lyme disease which show that most patients recover when treated with a few weeks of antibiotics taken by mouth.” The Lyme spirochete reproductive cycle is 30 days, so basic biology says that a few weeks of antibiotics is not enough. My doctor claims that 75% of his patients go back to a non-Lyme state. The average treatment is longer than 1 year. We treat tuberculosis with 1 year of antibiotics, so why should it be so crazy to do the same for Lyme?
Last year, I was at a Silicon Valley event for some of the most influential women in Silicon Valley. I collapsed outside, hit my head and sat there disoriented for 10 minutes. Fortunately, that part of my life is behind me and now I know that it is not my crazy desire to be a mom and have a career, but an insidious illness. That shouldn’t happen to anyone, but my story is all too common.
I have since been talking loudly about my illness and my recovery. I am a fighter and it sickens me to know how many others are suffering in silence. I also know that since I have been diagnosed, I have helped an incredible number of family and friends also receive diagnoses. My brother’s fatigue and stomach problems, Lyme. My mother’s 15-year cough, Lyme. And most recently, my three year old who was was having issues with her legs, Lyme. Which leads me to my hypothesis that Lyme disease is likely much larger than anyone really realizes. Everyone knows somebody with Lyme, they just don’t know it yet.
**The views expressed in this article are purely personal views. I am not a doctor or a scientist, just a mom on a mission to get her family healthy again.
By Daisy White
My journey towards health has been multi-dimensional, and I have learned that healing is not endemic to one specific area of my life. Treating Lyme disease has required more of me than I sometimes thought possible. For years I have watched myself both worry and complain. The worry: that I may be sicker than I am, that I am dying, that I am lost. The complaining, and the whining about the fact that I have had to endure, and that I would prefer to be doing something better with my life etc… In hindsight neither the complaining nor the worrying have helped me. What I do know, is that this journey has enriched me more than I had planned. In some odd alchemy my physical, emotional and psychic healing journey have all intersected and brought Healing into my life. Healing with a capital H often has required me to accept that on some level I am being ordained. Ordained to help not only myself…but all wrestling with, and making sense of the odd paths we find ourselves on. I am grateful to my journey in spite of my complaints and worries, and I offer my experience for greater clarity--clarity for myself--and all of us needing comfort as we navigate our own Healing.
Following is one snapshot of my journey.
I push out the heavy doors of the dentist’s office building. I squint into the daylight. I need to be out on the street before riding the elevators back down to the bowels of the parking garage.
Air…fresh air…I need air!
I step out to the sidewalk. I reach into my cardigan pockets, deep breath, close my eyes -- a mini rest. I feel the business card in my left pocket, the dentist’s referral. I read his name out loud to feel it my mouth. Does it fit?
“Dr Heller.” Hum, maybe. Another appointment to make, another doctor to meet -- everything hurts. Too many different diagnoses; too many times; Lyme, ebv, immune blah blah, teeth crud, parasites, or some strange phenomenon. Who knows how I will ever find my way back to health.
I look up. A woman walks by me with a baby stroller, the kind with two seats sitting side by side. I’m jealous. This excursion through all the dentists of America… through Lyme…cavitations…who knows what to call it anymore…has my uterus stalled out. And, she has twins. White blankets are piled high. I can’t see the kids. She’s walking a yellow lab in one hand, pushing the stroller with the other. Wow! The dog tugs and stops her. He squats. She stares at me. I study more closely. She’s covered in dirt. She looks homeless, not at all like a suburban mom. She catches me staring at her.
“What do you want?” She yells and her sea blue eyes crazy into my soul.
Gotta go! “I thought you were someone I know.” I fake look into my purse and slow walk back into the building.
I wait for the elevator. The parting words from my now dentist, echo through my head. “So many of your teeth are damaged. Go see Dr. Heller… the dentist who removed your mercury was a bit of a butcher, you have infections. Dr Heller will do the root canals.”
I step into the elevator going down. The doors close, I’m alone with my thoughts. Butchers, infections, Lyme disease, chronic infections —I know too much about it, been doing it for too long, too many dentists. Getting tired of incessant 1st dates with Doctors and Dentists. Too many opinions, I need to make sense of it all, sort through opinions; make the right decisions. I’ve been playing their words over and over again, like ribbons sweeping over my memory, an endless tape loop….
“You’ve really got a lot of problems I’ve never met anyone so bad, not in all...”
“If you don’t get all this work done, your organ systems will shut down.”
“You need root canals, Dr Heller.”
“Root canals will give you cancer.”
“You might die.”
“We have to pull all your teeth out.”
“You can’t pull out all your teeth, you’re a beautiful woman and still so young.“
The elevator jolts me aware landing at P1. The doors open and a short thumb of a woman peers in. “Going down?”
“No. Sorry.” The doors close, much-too-slow…I see my lie light up her face. I don’t want anyone in here with me. I plunge back into my thoughts, till the elevator hits the ground with a bang. The bell rings, the lights confirm, P2. The doors open throwing me back out into concrete darkness. The car? Level 2…where the valet was. Need to get home, need to lie down before teaching class. Was it 2B? 2B? 2B or not to be?
“YAAAAWN,” that helps. I cover my face with both hands, take a deep steadying post yawn breath, L.A.’s unending car catacombs are a maze I can never undo. Find the car -- to die: to sleep. Is that the valet? The light up ahead looks promising. Save my strength, go towards the light.
Whether 'tis nobler in the mind to suffer the slings and arrows of outrageous fortune.
Shifting my purse from right to left, my teeth shoot me up with pain, jolt me from the lower molars, a stab in the back. I’m losing it, the pain, the dark, the sleepless nights. For in that sleep of death what dreams may come…Why can’t I stop that? Where is my key out of this labyrinth? The ticket, I need my ticket.
I squat digging through my purse, looking for the ticket to give to the valet when I find him. Where was the valet section--was it 2B? That is the question. Blue, I know it was blue. Blue, looking for blue paper, I tear my purse apart, its guts out onto the concrete. There it is, my blue ticket, in my blue bag, under my overstuffed wallet. I must be taking too many supplements. I must re-examine my protocols, pare down. As I re-stuff my purse, I go over my protocols in my mind.
Iscador/mistletoe/viscum album, my silent weapon fighting the long-term effects of this mysterious illness attacking my whole body. Can’t stop taking that, it fights my family history of cancer too. Chronic infections can cause cancer they say… I am running from a silent ghost. Iscador is my protector.
Ozone/03, well Ozone kills everything, so they say. But, after nine months of using it whatever is eating me is not dead. I’ll persevere with ozone regardless. In my ears, O3 drinking water, vaginal insufflations, breathing it through olive oil, I think it’s helping. Enzymes, Vitamins, Antibiotics, Castor oil packs, Lasers, Charcoal, Bite plates, Special toothpaste, suppositories, powders, liquids, energy work, hocus pocus, acupuncture, herbs, to be cooked in witches brews… Eye of newt, and toe of frog, Wool of bat, and tongue of dog while I’m at it why not,my kitchen is an apothecary for a bizarre troll--me. Like a hell -- broth boil and bubble.
Finally, 2A. and….2B. To be or not to be in valet parking land with all its cave-like beauty.
“Heeellllllo” The valet welcomes me, an accented greeting. I hand him my ticket. I stare at this funny square man standing inside his valet booth. He puts my ticket into the mouth of his machine and it spits it back out. “Six seventy-five.” He wants. I hand him the cash. He gives me my quarter change. “Nice today, huh?” The garage looks dank, not sunny at all. I am still. I have nothing to say. I hadn’t really noticed the weather today. I smile. I wish he had a cure for me. I want to ask him if he’d been a dentist in the country he was born in. Maybe he knows sooooomething. Anything?
“What collllor is the cccar?” He asks.
“Silver, it’s a silver car.” He disappears into the dark.
I’m tired. I’m hungry. All this running round keeps me from having enough time to do the necessary. A doctor a day keeps the apples away. How could this have happened to me? When did this start? I can’t remember. Was it Provence? Last year, at this time when I took the writer’s group to Provence? Yes that’s right, the mysterious Nabothian cysts on my cervix, the miscarriages before that. I’ve lost perspective. My car is in front of me.
“Thanks.” I hand the guy a dollar tip with my ticket. He’s put the music and the air conditioning on, welcoming me back to my car. I shut them both off, slam the door. Quiet please. I pull my seat belt forward around my chest. I hate wearing it. It feels painful across my left breast. Tugs at my left shoulder all day from the pain of my lower left molar. I click the seat belt in. I rig it special to protect from the pain. I put the car in drive and pull forward. I wave goodbye to my could-be valet dentist.
I’m really losing it. I hope for random doctors to tell me I’m better, I’m fantasizing about dentists everywhere. I need the world to be my healer.
I miss Paris. I miss home. Drive, left, left... EXIT. Follow the signs: EXIT. 2B, 3B, I miss home... THIS WAY OUT...turn right... hot chocolate. Turn right, concentrate, daylight, dawn, Paris. No, concentrate on the concrete. THIS WAY OUT…EXIT! UGH…WRONG WAY. 4B. NO EXIT. Huit clos. I’m nuts. My head aches. DEAD END...Close your eyes. Pause. You will get out! You will. Rest for a moment. That’s right. Breathe. Double dark now…NO MORE PAIN, determined.
I open my eyes. I want to live. Turn around: EXIT. Left—up— right—up—up—left. There’s that square man again, keeper of the underground—Los Angeles. I am in Los Angeles. I giggle at myself. EXIT! Out, Out—Drive Out—Out, damn’d spot! Out, I say! Ok time to go home, I can do this, I know I can, I can get well. I know I can…
By Daisy White
I never liked going to the dentist. I never knew till I walked through my journey with Lyme disease how much I would hate it in the end. Lyme impacts all that suffer so differently. I have a friend who says, “Take a handful of confetti, throw it over a stream with a strong wind and see how it lands. That’s Lyme; different on each person.”
For me the confetti landed all through my teeth and jawbone. The good news, I can now hold a conversation with any good dentist. Lastly, I continue to learn how to be healthier daily in spite of all my obstacles…I may be healthier with Lyme than I would have been without it.
“Are all those your x-rays, Miss White?” The nurse smirks.
I stare at her nametag. Norma. Not sure I like her. I look up.
Nurse Norma points at my bundle.
“Yes.” I’m cradling them under my big blue purse. “Yes all mine.”
“Just…give them to me—I’ll have the doctor take a look.” She reaches.
I hesitate. Why is she so grabby? I hand over my life…my file…it all feels the same. I’ve put these last five years of dental history into special folders.
“Just put your things in the corner.” She sets down my bundle. Careful! I walk to the corner, drop my purse…we’re still checking each other out. “Come sit.” Norma orders.
I sit in the chair reserved for dental patients, feeling like Norma’s mental patient. Norma adjusts the arm, I tuck in. Norma fits me with my dental bib, grabs my x-rays and…“I’ll get the doctor for you,”…flies out.
I inspect the room: a little bigger than most dental offices, but with all the usual gear—drills, x-ray machines, chair side sink, a cup and its holder, sharp instruments, a flat T.V. screen, and a window (they don’t all have windows). The windows are lined with big planters and faucets for easy watering. Nature comforts me here. I close my eyes and wonder why dental offices never have any dedicated hooks or chairs for people to rest their things on...stay awake, stay awake.
I sit up and rinse my mouth with the soapy mouthwash from the cup, spit, lie back and listen to the music—Tchaikovsky, a faint version of Swan Lake’s cello solo. The sun hits my face through the greenery... sun and shadow, sun and rest, sun and stillness. I need to close my eyes, but the doctor…I sleep in the sun.
Swoosh, swoosh—rocking the hammock back and forth—sun and shade, all the sounds blending into one—crickets singing to the dentist’s cello solo, lawn mowers buzzing to distant high-speed drills from another office.
“You know, kids, I might die,” Mom says. I open my eyes to see my sister Autumn’s little face streaming with tears. I close them again. My foot drags outside the hammock, an anchor to stop/start. Swoosh, the trees, the wind—the sun plays hide and seek behind my eyes—shadow puppets change shapes. October in Sag Harbor cradles us in the hammock, mom my sister and me, tucked together in macramé rope... swoosh.
“Ok, Ok, mommy.” Autumn accepts the news. “Would we have to live with Dad?” I rock us faster. “I don’t know, girls, I just don’t know.” Swoosh.
“Hello, my name is Doctor Nowzari.” The dentist stands over me with what looks like a permasmile. Crap I fell asleep. “Well, I’ll tell you these x-rays tell a story and by looking at you, I mean, who would think that a beautiful woman like you would have such x-rays.” Don’t let that smile disqualify him, he could be the one—give him a chance, they say he’s good, a ‘periodontist.’
Doctor Nowzari sits and rolls on the rolling stool in close to me, his teeth showing in listening position. A tall Asian man in a white lab coat appears in the door. Nowzari motions and the man enters to stand behind him. Together they hover, “Tell me,” the dentist says.
I feel groggy from my mini nap. “Ummm…” I clear my throat. “Four years ago…” I sit up a little. “I had all my mercury amalgams removed by an alternative dentist. I had 17 fillings.”
“Yes.” Nowzari nods, keeps smiling.
“Then, at the same time, I had my last wisdom tooth pulled, on the lower left.”
“Ok.” More nodding, more smiling.
“Since that time I have had health problems—ahh, pain all over my body, pain in everyone of my teeth, pain that shoots from my teeth into my body... I’ve had three miscarriages...G.I. Symptoms, stomach pains, rectal pains, vibrating in my body, pains in my feet. Mysterious cysts on my cervix, they call them ‘nabothian cysts.’ I know all this is coming from my teeth because I’ve never had these problems before. I’ve also been told I have lyme disease and chronic infections.”
“Lyme? What does Lyme have to do with your teeth?” A giggle.
“Right, I know…so confusing. So, now, I’ve been everywhere and seen everyone and, when I tell dentists about this, they often say, ‘Don’t tell me about your body pains, just about your teeth.’” Nowzari still smiling, “When the first dentist was working on my teeth, he put in these white fillings and I had some strange allergic reaction to them. He panicked... and…then…he refilled some of my teeth four and five times, exposing the nerve in some of those teeth and leaving temporary fillings, ‘IRM’ in them.”
“Yes, yes.”
“Yes...So—I lost faith in that dentist and went on to see other dentists—to repair some of this work—because I still had IRM left in some of my teeth. But then a year later, and one miscarriage behind me, I was worse, so—I went to see another alternative dentist and he took a ‘panorex.’” I point to my x-ray pile to their left. They both look over and Dr. Nowzari rolls himself to the pile looking for the lower left. “... And told me I had a ‘cavitation’ in my wisdom tooth site. Ahhh, more dentists, and even more…then I was told I needed to have surgery for the cavitation, to drill out the dead bone. But I was too scared to have them drill into the bone and clean it out, so instead they sent me to ‘hyperbaric oxygen therapy’ for thirty five sessions.”
“Wow, thirty five sessions.” Nowzari is no longer smiling.
I look at him, at all of them, the nurse and the two men. The tilt from my chair makes it difficult for me to see their faces. The light from the window blinds me. The Asian man sneaks up against the leather chair and smiles politely. “Thirty five, that’s right. But, it didn’t work, so eventually they did drill out the bone. They did the surgery, the cavitation. But—I still had lots of problems, so—I have now spoken with several more specialists and they say I need root canals because my teeth are all infected. Mmm. Then the alternative dentists say that root canals will give me cancer— that it would be better to pull out all my teeth, my molars. But, I am only forty-three years old, and I still want to have a child and at forty- three with all these problems... Well, I’m, ah, concerned that something serious is, could be, ah, wrong with me. Something deep that hasn’t been found yet.” I squint up at Nowzari looking for his eyes.
“Ok, Ok, it’s ok. You’ re going to be fine. I know, I know how you feel. I promise you all this is coming from your teeth,” Nowzari squeezes my arm. “It can happen.” Is he being nice?
“Yes, but I have pain all over my body.”
“I know. This can happen. Let me look inside.” He holds up his gloved hands.
“I hs pppai I threeee and fourt.” I say with his hands in my mouth.
“Tell me.” He takes his hands out and smiles again.
“I have pain in 3 and 14.”
“She knows the numbers on her teeth.” The Asian man speaks for the first time.
“Yes, yes she does.” Nowzari puts his hands back in my mouth.
“And eiiiiiieiiinnnn,” I garble, taking care not to bite him.
“Yes, you have pain in 18.” He says pulling his hands fast out of my mouth again.
“Yes, and it vibrates, too.”
“I know, I know, we’re going to take care of it all. Now, I’m a ‘periodontist’ and you don’t really need me. What you need is a dentist. Who shall we send her to? Norma?” He calls, “Can you get an x-ray of number 18, please. We’re going to find you the right dentist, and the ‘endodontist.’
“Endodontist?” Oh my god, I am being sent to someone else?
“Yes, for the root canals. Just let her take the x-ray. Norma?”
They both step out.
Norma comes around to my left and, “Open,” she puts that little plastic thing in, and, “Bite down.” Then pulls the round x-ray lens to my face and, “Don’t move,” Then she throws the heavy lead blanket over my chest. “Ok, I’ll be right back.” She steps out.
I picture our soft kitten Fleur sleeping in the crook of my neck with her downy white kitten fur at four AM, crawling under the covers purring my left side to sleep. How many more—before my body can carry full term? How many more dentist…one one-thousand… how many more doctors...two one-thousand…how many more…three one…
By Amy Tan
I used to brag that I never got sick. I rarely came down with colds or the flu. I had health insurance for catastrophic illness and only used it once, for surgical repair of a broken leg, the result of heli-skiing, the sport of a vigorous and fearless person.
But in 1999, all that changed. I learned what it is like to have a disease with no diagnosis, to be baffled by what insurance covers and what it does not, and to have a mind that can’t think fast enough to know whether a red traffic light means to press on the gas or hit the brakes. I have late-stage neuroborreliosis, otherwise known as Lyme Disease. The neurological part reflects the fact that the bacteria, a spirochete called borrelia burgdorferi, has gone into my brain.
My case is in many ways typical. Like many, I had little awareness of Lyme disease. I did not think about Lyme because I live in California, at least that’s where I file my taxes. For a good long while, it did not seem significant to me or to others that I also have a home in New York and that I spent weekends in upstate New York. Then again, one does not need to live on the east coast to get Lyme. You can go hiking in the woodlands of Mendocino, Sonoma, Santa Cruz, and the Sierra foothills, just to name a few hiking spots Lyme ticks and I are fond of.
But my particular interloper found me at an outdoor wedding on June 1, 1999. We were in Dutchess County, New York, a place that was lushly bucolic–complete with babbling brook and trees, logs to sit on and cool grass for walking barefoot. Dutchess County, I would learn later, also had the most number of cases of Lyme Disease in the country that year. And the particular swath I was in had had ten times the number of cases as the rest of the county.
The day after the wedding, I saw a bright red rash on my shin. I briefly thought about Lyme disease, but the rash lacked the “bull’s-eye” that most infectious disease doctors say is characteristic of Lyme disease. So no worries! My rash had a tiny black speck in the center, what I assumed was a pinprick-sized blood blister, the result of perhaps a spider bite. I avoided scratching it, and thus, I watched that dot grow more rounded. What I was watching, of course, was a nymph tick feeding on my leg and regurgitating bacteria into me. The black dot fell out but the rash grew larger and brighter red. After a month, light red splotches bloomed on my arms.
The day after I was infected, I had another symptom, a very unusual one for me and unusual for anyone in the summer. I had the aches, pain, and fever of the flu. I had not had the flu in about 15 years and was disappointed my record had come to an end. But within a day, I managed to beat it back, and I never developed respiratory symptoms–no stuffy nose or hacking cough. I thought to myself: What a great immune system I have!
More symptoms crept up, which I passed off as related to stress and airline travel–a stiff neck, insomnia, a constant headache, and a bad back followed by a frozen shoulder. I was often tired and jittery, but that, I reasoned, was the consequence of an active life and too much coffee. Who was I to complain? I had a wonderful life, a great husband, a lovely home, a successful career.
Then my feet grew tingly and became numb. At my annual checkup, I mentioned this to my doctor. She said I had neuropathy, which is not caused by stress. I related that I had developed a strange rash a few months earlier. Could it be relevant? No, my doctor immediately replied.
Like many chronic Lyme disease patients, I was launched into a medical maze, searching for answers as things worsened. I told my husband that something in my body had broken. It was falling apart. I went to specialist after specialist, and each one found some possible cause within his or her specialty. The weirdest symptom was plunging blood sugar, going down to the 20s and 30s, before bouncing back up to normal. That so alarmed my doctors they hospitalized me. An MRI revealed 14 lesions in my frontal and parietal lobes, but my doctors felt that was normal for a person my age; I was 49 at the time.
A CAT scan showed an incidentaloma on my adrenal gland, a small 2 cm tumor. That could be the reason for the blood sugar plunges, the racing heart, the specialist said. It could be benign–or not. An option was presented: I could have CAT scans every six months, at my expense, since my insurance did not cover preventive care. Or I could have my adrenal gland removed laparoscopically on the premise this was the cause of my symptoms, in which case, insurance would cover everything–all my tests so far, the surgery, the follow-up meds. The surgery was supposed to take an hour and a half. But there were complications. The artery to my spleen was accidentally cut off. In the end, the surgery took five hours. I was put on cortisone and the symptoms abated–but only briefly before they worsened and became bizarre.
Now I had hallucinations, what I later learned from a neurologist were simple partial seizures. I saw people walking into the room, two girls jumping rope, numbers spinning on a lit-up odometer, a fat poodle hanging from the ceiling. They disappeared after a minute or so. After the first hallucination, I did not take the others for anything but a weird brain quirk. Most were fairly entertaining. The ones with sudden putrid rat smells were not. But then there were other, more serious seizures, complex partials with an absence of consciousness. My husband said I acted at times as if I were in a trance, eyes wide open as if scared and unresponsive to people around me. I had no memory whatsoever of those episodes, and in fact, at times, my memory of things that happened just before and just after the seizure had been erased.
By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. When I wrote by hand, I reversed letters. When I spoke, I substituted words with like-sounding beginnings. I did not possess any of the skills necessary to write fiction. I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery. Thus, my novel-in-progress lay abandoned between feeble attempts to resuscitate it. At times, when asked what I was writing, to my horror, I could not remember, and I would struggle over the next hour trying to recall the faintest details.
I no longer dared get behind the wheel of a car. When I did venture out on foot, I would sometimes find myself lost in what I knew was a familiar place, my neighborhood of thirty years. Why didn’t that building on the corner look familiar? Why did everything seem as though it were the first time I had been there? I easily became lost in stores, hospitals, hotels, and I would panic, certain I was losing my mind and developing dementia related to early Alzheimer’s. My anxiety was a hundredfold of what was warranted, even in a post 9/11 era. Eventually, I could no longer leave my house alone. In any case, it hurt to walk too far. My muscles were stiff, my knees and hips ached. And I was almost too tired to care anymore.
Let me add here that my doctors were affiliated with major urban hospitals, were tops in their department, well-known, well respected. I liked them. Not once did they raise the idea that I was a hypochondriac. But they also did not raise the possibility of Lyme disease. One doctor, however, gave me a battery of tests, including one called an ELISA. I looked it up and saw it was a screening test for Lyme. There I saw all my symptoms. When the doctor told me the test was negative, I asked him about the accuracy of the test. The doctor said it was impossible for me to get Lyme in California. I said I also lived in New York. He said Lyme was so rare that it was impossible that I had it. In any case, he had not tested me for Lyme, he said. It was the ELISA for another spirochetal infection, syphilis. Wait. He thought I was more likely to have syphilis than Lyme?
I turned to the Internet, which is where doctors believe hypochondriacs catch “terminal” diseases. And there I read more about Lyme, about the inadequacies of the ELISA, especially with late-stage cases, one that is beyond a month since infection. I saw the same rash I had had four years before, read about bizarre symptoms like mine. Further sleuthing gave me the name of a Lyme-literate physician in San Francisco.
My Lyme doctor considered the history of my rash, the summertime flu, the migrating aches and neuropathy, the insomnia and fatigue. He thought lesions in my brain were significant in light of my neurological symptoms. He saw on previous tests that I had some interesting changes in my immune system. He ordered a complete battery of tests from IGeneX, a lab specializing in tick-borne illnesses, to check for not only Lyme disease, but its common co-infections, ehrlichia, babesia, bartonella, all of which can be carried by the same tick that gives you Lyme. Two weeks later, I learned I was positive for Lyme on the Western Blot, as well as on the PCR, (polymerase chain reaction) which can help detect actual DNA “debris” of the tick. My doctor told me that the tests only confirmed what he already knew.
Let me hasten to add that not all chronic Lyme patients test positive on the Western Blot, at least not at the levels set by doctors who follow CDC surveillance criteria as diagnostic. There is much more to be done before the tests can be considered reliable in every lab across the country. Unfortunately, most doctors still go by the old and unreliable standard: that Lyme is rare and exists only on the East Coast, that a bull’s eye rash and fever must be present, that you are tested first with an ELISA, which is considered a false positive if you had no bull’s eye. If you did have the bull’s eye, you must then get a positive Western Blot. That will get you about two weeks of antibiotics. Further insurance coverage of treatment and medications is denied. That is the standard recipe that has destroyed many lives.
Like many late-stage neurological Lyme patients, it took a while for symptoms to begin to lift. A day after starting antibiotic treatment, I became feverish and ill with the classic Jarisch-Herxheimer reaction, which serves as a second confirmation of a spirochetal bacteria infection. A month later, the joint and muscle pain eased up somewhat. Two months, and some of the fog finally lifted, and I frantically wrote for long days, fearful that the curtain would come down again. After six months, I had less muscle stiffness or no joint pain remaining. After two years, I felt I was back to feeling well.
Today, I can once again write fiction, speak at conferences without notes, and walk in my neighborhood alone and without anxiety and panic. I can follow conversations, understand ironies, and tell jokes. I’ve been under treatment since 2003 and consider myself healthy, if healthy means having your life back in all the ways that matter. I still have neuropathy–numbness in my feet, which causes some balance problems. And I have epilepsy for life, due to the 16 lesions in my brain. Yep, 16 and not 14. I added a couple between the first MRI and the MRI done after I was diagnosed, during that period when the bacteria were happily munching on my neural tissue. I also have a sleep disorder that could have me nodding off even when talking and standing on my feet.
I must now take seizure medication for life, as well as medication to keep me awake. Those cost about $2000 a month, most of which is covered by insurance. Insurance will not cover my antibiotics, which I still take. When I've gone off antibiotics, the problems come marching back, one by one, the flu-like symptoms, the headaches, the arthritis. I think about four and a half years of lost time, of pain and panic. I think about our health care crisis. I think how a Lyme-literate physician and about $50 worth of antibiotics early on would have taken care of my disease. None of those other tests--the multiple MRIs, the CAT scans, the 5 hour surgery, the 10 specialists, the lifetime of meds, the required yearly visits to my neurologist–none of those costs would have been necessary. Because of ignorance, I am a burden on the medical care system.
My disease is managed, but I am not cured. Borrelia is a wily spirochete and it, finally, has an identified genotype. And so now we know that with each replication cycle, there are changes to its phenotype here and there. We know that the bacteria can go into different forms, become wolves in sheeps clothing, and evade detection and antibiotics. When I say "we know," I mean, of course, those doctors who are literate on Lyme disease, who don't cling to the notion that Lyme is rare or that the ELISA is accurate no matter how long you've been infected, who don't think that one size of antibiotic fits all.
By “we,” I also mean those who have persistent Lyme and know the enemy still within us. I am aware that the bacteria in me could one day run rampant and that my illness could progress and leave me disabled once again, unable to read, write, think, or walk. It is the reason I am building a house for the future, which will be completely accessible, with wide doorways, handrails, an elevator, level entries and exits to outdoor areas, a roll-in shower, a walk-in bathtub, lower-height counters, and a whole host of other preparations most people would never think would be necessary.
As a patient with persistent Lyme disease, I have joined a club of people with a stigmatized illness, one many doctors do not want to treat. I am lucky to have a doctor who is willing to provide open-ended treatment. I am lucky I have insurance. Most Lyme patients are denied insurance. They are viewed as whacky. They have gone without appropriate care for so long they have lost their health, their jobs, their homes, their marriages, and even their lives.
I now know the greatest harm borrelia has caused. It is ignorance. That ignorance is destroying more and more people as an epidemic grows. Lyme disease is now the fastest-growing vector-born disease in the country. Much more is needed to know how to diagnose it and how to treat it.
In the meantime, my advice to friends and family is to be aware and to be informed. Realize that Lyme disease has been reported in every state in the United State, in Europe, in Asia, every continent except Antarctica. The CDC estimates the actual numbers of those infected each year is at least tenfold of what is documented as confirmed cases. Some Lyme researchers believe the numbers are much, much higher.
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How To Avoid Getting Lyme Ticked
In 1975, Lyme Disease was named after the town of Lyme in Connecticut. People then thought it was a local disease, as if the bacteria resided only there. Today, you could nickname that bacteria after thousands of cities. Where I live, “there is no Lyme”–or so most people would say if you asked. I know otherwise. A friend biked up to the top of Hawk Hill, sat on a wooden log, and picked up a tick. He was positive for Lyme disease. Reporting of Lyme is incomplete, so if you are relying on reports, you are relying on unreliability.
I have found a way to better judge if Lyme is in the area: ask a veterinarian. They know more about Lyme than most doctors I’ve met. If they test for Lyme, they test for co-infections, knowing there is a 50% chance the dog will have at least one co-infection You can also ask people whose dogs run about in the fields and the woods. A couple I met recently said their dogs had both had it repeatedly. Another dog was untreated and died. They feared a neighbor had it as well.
If you are going into an area with deer use insect repellent, one that lasts for, say, 12 hours, and with 30% DEET. UltraThon is a good choice. By the way, 100% DEET does not mean it’s more effective, especially, if it wears off after two hours.
When going into tick country, spray your clothes a few days before with Permethrin. Wear light-colored pants to better see if ticks have glommed onto you for a ride and a snack.
Don’t lean against a tree trunk, marveling how you are one with nature. Nature may be a tick. Don’t sit on logs, wooden benches, stone walls or the ground in tick-infested areas. Ticks love wood surfaces even more than leafy ones. Recognize that Lyme ticks don’t wait until summer to be active. Know where Lyme ticks can hide on you, and sometimes these are not the obvious places you would look. They might be under armpits or the backs of knees, or even in the groin area. And if you are bitten by a tick, save it and send it to be tested. Some say you don’t have worry unless the tick was attached for over 24 or 48 hours. But how do know when the tick first attached itself to you? And why is it that my tick caused me to be sick less than 24 hours later? If you don’t see a bull’s eye around your rash, realize that about 50% of the people diagnosed with Lyme never saw the tick, and over 50% of those who actually had the rash did not see a bull’s eye.
Before you set out to be tested, be aware that the guidelines set by the Infectious Diseases Society of America are those that have left many misdiagnosed and untreated. For an eye-opening view on the politics of Lyme disease and its effect on real and very sick people, go see the film “Under Our Skin,” an award-winning documentary that is as suspenseful as a murder mystery. If you suspect you have been infected, go see a Lyme-literate physician, for example, a member of the International Lyme and Associated Diseases Society, www.ILADS.org. Don’t be put off if your regular doctor raises a skeptical eyebrow. Go to a doctor who will give you the more reliable test, a Western Blot, preferably by a lab like IGeneX.
I wish I knew ten years ago all of the things I’ve just mentioned. If I had, I might have avoided getting bitten. I would not have let a treatable disease turn into a permanent, disabling, and life-changing one.
Be knowledgeable. And if you know someone with Lyme disease, be compassionate.
Editor’s Note: Amy’s disease has advanced since this story was written and has left her with epilepsy. Today, while not cured, her disease is medically managed, and her health, by her own new definition, is excellent. She now has a valid excuse why she cannot drive and must have her husband play chauffeur.
By Perry Louis Fields
My name is Perry Louis Fields, a former track and field professional, who spent 5 years figuring out how to cure myself of multiple autoimmune illnesses, including chronic Lyme disease. There are lots of stories out there about chronic “death bed” illnesses and there are hundreds of thousands of people who are sick just like I was. Many call themselves survivors, but I think I’d rather call myself enlightened.
I was an “invincible” athlete. My face was always turned towards the finish line. I thought about training hard, working hard and winning. When I felt sick, I pushed through. When I was bitten by a tick a year before I succumbed to its effects, I shrugged it off and didn’t really know what Lyme disease was. I had a stellar track year and almost made the Olympic team in 2004. But in 2005 after a very stressful year with a new coach and a move, I finally couldn’t shrug off the symptoms that were increasing. I felt toxic, but when I got treatment I went into a downward spiral from which I thought I would never emerge. It was hell.
Lyme disease is simply not studied enough. I believe, as do many other researchers and medical doctors who specialize in the treatment of Lyme disease, that it will become an epidemic. Mothers can pass it on to their unborn children. And since Lyme disease even hangs out in the skin of its victims, it is believed that people can pass Lyme disease to each other through human contact.
Even scarier is the fact that Lyme disease can be treated pretty much successfully when it’s diagnosed and treated immediately. But this is often not the case. The ticks that carry Lyme disease are hard red ticks, which can be so small you won’t even notice them on your skin. As such, most people who are bitten and get Lyme disease don’t even know it. Those infected may be sick for years and years and may eventually die prematurely from all of the after effects of the disease slowly invading their cells and taking over all metabolic functions. People are diagnosed with MS, Bell’s Palsy and even Parkinson. Some get paralysis and the majority have excruciating debilitating pain on a daily basis.
These are the type of horror stories you hear from most of those with Lyme disease. There is no shortage of online forums, Facebook posts and websites with people sharing their stories about the hell they are living in from the disease. There are even books out there with nothing in them but the description of how a person is living day to day with Lyme disease.
Chronic disease in any form is pain. That is something we all understand. I could write pages upon pages of what it was like to live bed ridden, about the days that I felt my body was as fragile as a 95 year old, that I thought I was made of ash and that a strong wind would disintegrate my body into thin air. I could write about how hard it was for me to move back into my parent’s house because I couldn’t take care of myself and I certainly couldn’t drive to my appointments.
The most interesting take away was my initial conventional treatment with a Lyme Literate Medical Doctor (LLMD) whose standard cocktail of drugs pushed me over the edge and made my mental state suspcious. At one point I was close to asking my mother to commit me to keep me safe from harming myself or other people. I was a strong candidate for suicide when I was introduced to long-term antibiotics. But the worst part of the journey was when I was told by these professionals that you never get rid of Lyme disease, you just manage it.
Anyone who has ever been sick and told that their disease is not curable and that you will be managing it for the rest of your life understands the fear and dread and the hopelessness. Words here cannot even express the scope of the despair.
After these LLMDs made me a guinea pig and wanted to manage my disease forever, I went in the opposite direction. It’s hard to be brave in these situations when you are scared into believing that only their method will work for you. You are scared to leave the care of a doctor who has supposedly treated thousands of patients with your illness and has had so many years’ experience. He’s an expert, right!
But many times just taking a break and shutting off the outside noise and tuning into your own heart will provide you the most outstanding answers. You meet people for a reason. You are reading this for a reason.
Being the young, brash, never tell me “NO” type of gal paid off. Even with my results of Lyme, Rocky Mountain Spotted Fever, and Lupus, I was determined to move on. I knew I could either plan my death or plan a future. Since both were going to take some research, I decided for the future. In that instance when I had decided where I was going, it was only a matter of time for my reality to be formed to fit my beliefs. And that’s exactly what happened.
I never took another antibiotic and you know what happened? I got better. I reduced the bacteria load naturally and I never went “psycho” again. It was a slow healing, but the truth is for most people who find themselves chronically ill, you have to factor in a lifetime up to that point of questionable daily habits (stress, environment, foods, etc.)
Each day gets better and better, you may have a few dips along the way, but that’s common when healing properly. As your days get better and you find yourself having these amazing days where you did activities you haven’t done in years, you realize you are on the right path and it gives you the encouragement to keep working until you are totally well. There are no vicious cycles of feeling slightly better and then becoming really ill, worse than before.
We are all given choices and we all make choices. Some are made by just not knowing any better. By getting sick, it’s a wakeup call to do things differently. If you ignore it, you live a life that’s not ever 100% and you die prematurely. If you use it as an opportunity, it becomes just that.
Throughout my journey with Lyme disease I met a lot of people with Lyme. Most are negative and angry, and this is totally understandable. They feel like their doctors have given up on them or they are some “test subject” who is given drug after drug to fight this invisible infection. Since there is no shortage of sad stories out there, people get bogged down into the negatively of the others who have the disease. It’s best to make a break from the pack.
Since I got ill, I started coaching people with chronic illness, even when Lyme disease is not the diagnosis, someone with “mystery illness.” I’ve seen people who were once in my position recovering fully when given no hope by their doctors. I’ve seen people who I think were worse off than me become fully well. What they all have in common is that they made it an opportunity and they set their intentions of what they wanted and it became a reality.
We are all given the same healing gifts and have inside us a miracle that is the human body. It endures all kinds of trauma. Several years ago my 92 year old grandmother received the diagnosis of ovarian cancer. She said she was too old for chemo and didn’t see any alternatives. She was ready to check out, but it wasn’t as easy as she thought it was going to be. She was seemingly frail and decided to stop eating and stop drinking anything. It took several weeks for her to finally pass. It left a lasting impression on me. A motorcycle accident I witnessed in Orlando knocked a kid’s helmet off and his head hit the pavement. When I ran over to him, half of his head was imploded from the impact. Not knowing what to say, I told him to stay relaxed and breathe, though he showed no signs of life. All of a sudden he took a huge breath. He later died at the hospital, but to this day I still cannot figure out how he could have still been alive when I came over to him on the road.
Since my ordeal with Lyme disease, my first physical feat was riding a mountain bike (on dirt paths) from Pittsburgh to Washington DC in 4 days. Then I entered a professional triathlon (my first ever). I came in third and nobody was more surprised than I was! After that I went back to track and made an appearance at the USA Track and Field Championships in the 800m. Then I decided to become a sprinter, gained 15lbs of muscle and ran the 60m competitively for several years.
The body can endure in a chronically ill state. When given the proper guidance, the body can make miraculous recoveries.
There is always a way.
By Angela Coulombe
In August 2007, a week after I finished running the 10th Anniversary of the Beach to Beacon 10K road race, I started to experience the first symptoms of Lyme disease, a swollen right knee and mild joint aches. As weeks went by, I experienced more Lyme related symptoms: muscle aches, migraines, nausea, fatigue and general lethargy. I did not know anything about Lyme disease, so I made no connection between my symptoms and the disease. In October 2007, 3 months after the onset of the initial symptoms, a bulls-eye rash appeared on my upper arm. I showed my mother who did know about Lyme and she suggested I see my primary care physician immediately. My PCP sent me to an infectious disease specialist who diagnosed me with Lyme disease. He gave me 3 weeks of doxycycline (standard CDC treatment) and told me I’d be fine.
Three weeks later I was anything but fine. I could no longer turn my head, lift my arms up over my head, dress myself, climb stairs unassisted, get in and out of bed unassisted, roll over in bed unassisted, look after my two small children, or carry on anything resembling the normal life I had lived. The pain in my joints was overwhelming. Living meant dealing with the pain on a minute-by-minute basis to try to make it through the day. Most days this meant lying on the couch until someone came home to help me. It was a real struggle. I phoned the infectious disease specialist telling him I thought I needed more antibiotics, as I was so sick I could not move. He refused to prescribe more, saying that what I was experiencing had nothing to do with Lyme and was simply old age and arthritis. He said this even though I was only 43 at the time and had NO signs of any arthritis in any of the tests done along with my initial Lyme test. I had no idea what I would do next. This was the end of October 2007.
By mid November 2007, I wished to die. With no cure, no help and no hope in sight, I could not see myself, once an active athlete and caring mother, living the life of an invalid while enduring the most excruciating pain I have ever known in my life. (And as a veteran of two home births out of choice, I know a bit about pain.) My sister told me of a doctor of osteopathic medicine who was Lyme literate and might be able to help me. A beacon of hope came into my life.
I first saw this DO at the end of November 2007. I was put back onto antibiotics. A month later, by my own request to try to not take antibiotics, I was put on the Zhang protocol to fight co-infections with Babesia and Bartonella. Progress was slow, but progress was made. I started to regain my strength, appetite and ability to look after my children. By April of 2009 I was off all supplements and I was able to start exercising again. By November 2010, I ran the New York City Marathon in 4:12:58. In 2012, I completed ten races ranging in distance from 5K to half marathons and triathlons. I hit my first PR for that year in July running a 6:58 pace mile and in October I qualified for the Boston Marathon and will be running Boston in 2014. In 2013, I completed 4 triathlons, 4 road races, achieved 2 PRs for 10k races (46:27 and 45:35), ran 24 miles as part of the Reach the Beach Relay, and on October 13 I ran the Chicago Marathon finishing in 3:42.
What I would like to tell the medical profession:
As you can see, I’m a competitive athlete who can persevere through a lot, but none of this would have been possible without further treatment beyond the CDC prescribed 3 weeks of doxycycline. If I had not received further treatment, I’m sure I would not be alive today. My personal treatment at the hand of a Lyme literate infectious disease doctor, who I assumed had my best interests at heart and wanted me to be well, turned into a personal journey to hell and back.
More money needs to be put into research about this disease, better tests need to be developed and more needs to be done to prevent it. In the case of those who DO NOT recover after 3 weeks of standard CDC care, follow up treatment needs to be recognized as a viable treatment and prescribed. More PCPs need to educate themselves about the disease and better public service announcements need to be made to keep communities reminded of the very real dangers of the disease. Ultimately, recognition of Chronic Lyme as a condition needs to happen and a cure for chronic Lyme Disease needs to be found.
What I would like to tell others with Lyme disease:
Find support from others who understand: When I was first diagnosed, I knew nothing about the disease. When I realized that I was still not well after 3 weeks of standard CDC treatment, I needed support and information. I found another Lyme disease sufferer, Amie Levasseaur, and together we spent many nights on the phone with one another discussing how we felt and helping each other to cope. It is said of Lyme Disease that you don’t get it until you get it. We both found this to be the case. As great and supportive as my family has always been, they could not feel the pain that racked my body 24/7 and gnawed away at every fibre of my being. Amie understood, as she was feeling the same. Amie and I referred to each other as “Lyme buddies” and provided each other a great comfort during very some very dark days. Amie and I vowed that when we got well, we would try to do something to help others with the disease. We decided we’d start a non-profit called “Lymebuddies” to be the human voice at the end of a phone to help give information and support to those who have Lyme and their families. In 2008 Lymebuddies became a reality and we have been doing all we can to also promote awareness and prevention within the communities where we live. As such, we hold two yearly events: Lyme-Aid, a music festival, and a 5K race called “Jimmy the Greeks Maine Mall 5K for Lyme Disease Awareness.” More information is available at www.lymebuddies.com.
Hang onto hope: I’m no one special. I’m just a mother from Maine with a story and a passion for helping others. But one thing I’ve learned from Lyme is that no matter how insurmountable the disease seems, there are people out there who care and want to help and there are people out there who make a recovery. It is not easy and there is no magic bullet but it can happen. I think one reason there are not more recovery stories out on the internet is because after fighting such a hard battle, when you recover, you want to be done with Lyme completely. You want to walk away from it, you don’t want it to define you anymore. You are tired. However, I find it hard to walk away from a disease that nearly claimed my life and I don’t want others to get to that stage where I once was. My recovery is not 100%. I have flair ups now and again, but I have learned what triggers them and have learned to adapt my lifestyle so that I can be active. The journey was not easy; there were many, many obstacles along the way and many, many tears shed along the way. However, I AM ALIVE, where at one stage I wished to die, and now qualifying for not only the Boston Marathon but also the London Marathon and Berlin Marathon. (Please visit www.lymerunner.com for more information.) With every step of every race I run, I try to raise awareness about Lyme Disease in the hope that one day a cure will be found. Don’t give up hope.
By Sherry Cagan
For the past eight years I’ve been battling a mysterious illness, one we now know to be Lyme disease. I’ve felt much like I had a major hangover and been hit by a car all on the same day and that’s putting it mildly! But come December I’ll be back in the saddle again, determined to share with my two girls my love of the magnificent Cutting Horse. And to teach them not only how to overcome adversity like a long term family illness, but also the importance of working hard, being prepared and going for your dream!
Providing my health holds up, I’m aiming to compete at this year’s championships so I can be inducted into the NCHA Hall of Fame – my goal! To do so, I must win the remaining dollars needed to meet the NCHA’s required $500,000 lifetime earnings and I am close enough to possibly reach my goal this year. During the 1980’s and 1990’s I was a consistent finalist at the National Cutting Horse World Championship Futurity and other major events. I won many Championships on horses bred and trained by myself, my Mom Lanna Wolfenbarger and Step-Dad Glen Wooldridge on our family’s farm in Kentucky. Many of these horses were by the legendary Gun Smokes Pistol, our family stud and sire to Gunsmokes Wimpy, a two time World Champion. The horses from my family’s farm have collectively won over $4,000,000.
But despite all of my prior professional prowess, my dream of being inducted into the NCHA Hall of Fame is not an easy one and one that just recently felt close to impossible.
Health Crisis
A small tick bite in 2005 saw my world shatter. I had strange unrelated symptoms that ranged from piercing body pain and numbing to blacking out, difficulty in breathing, and coughing. I saw around 50 doctors over the next five years. All had declared there was no such thing as Lyme disease in California and subsequently misdiagnosed me. I was diagnosed with everything from MS to cancer and it was recommended I have a hip replacement along with a number of other surgeries I fortunately opted not to proceed with.
Unfortunately, this lack of knowledge and inability to diagnose the disease in the medical community at the time allowed the Lyme spirochete bacterium to progress throughout my body and grow to it’s persistent crippling late-stage, from which there is no definitive cure. By the time I discovered I had Lyme Disease, it was nearly too late. I found myself going into shock in the ER with a systemic MRSA staph infection and nearly lost my life in the spring of 2011. My depleted immune system was failing from the high levels of the Lyme disease bacterium and co-infections.
From a strong willed, physically fit athlete and world champion equestrian, I found myself a sickly 93lbs - a mere shadow of my former self. My universe shrunk. Lyme stole my freedom. Not able to get out or feel well enough to see visitors, I was isolated. And certainly not well enough to do my new work as a sculptor. I unfortunately had to decline commissioned work due to my illness. After 2007, it became impossible to work. In addition, medical bills from Lyme are exorbitant and not covered by insurance. We have spent out of pocket over $200,000 seeking medical help over the last eight years.
I suffered one health crisis after another, all after being bitten by a tick. As a country girl who has been raised around livestock on a farm and having been exposed to insects my whole life, you can imagine how incredible I found this diagnosis to be! I did not believe a bug could make me that sick! It wasn’t till I saw my brain spec scan, which looked like I had experienced a stroke from the Lyme bacterial infection in my brain, that I realized this was my ironic reality.
A Path to Recovery – With Some Success but Not Enough
After five years of suffering from a non-stop series of weird symptoms, I was finally properly diagnosed in 2011, confirmed by a Positive PCR test for Lyme disease. Unfortunately it’s not easy to get tested for Lyme. I had to finally demand the test from my resisting physician after exhausting every other scan and test known to medicine. I was finally referred to a Lyme literate doctor, who had seen thousands of Lyme patients.
I then went through two years of very aggressive treatments, including seven months of multiple IV antibiotics, several hours a day. Much of the time I felt I could no longer continue treatment because the die off from the bacteria seemed to make me sicker. It was nearly unbearable. In these dark moments my husband reminded me, ‘What choice do you have?’ As I was rapidly heading for a wheel chair, I am glad for his reminder and support. There is light at the end of the tunnel. It was not until after the sixth month of IV that I began to feel a substantial relief in the symptoms. But unfortunately there is not yet a cure for late-stage Lyme and present treatments come with their own host of problems. I have relapsed a few times and need to continue ongoing post treatment therapies to maintain my ability to function.
Although compromised physically, I’m fortunate to be strong-minded. To avoid further complications and anything that burdens your immune system, one must be extremely self- disciplined and diligent. It’s a constant battle to keep the bacterial levels down to minimize symptoms. And it is virtually a full time job keeping up with all the various therapies needed to assist one’s impaired system from the damage of the Lyme bacterium.
Today’s Challenges
My health is unpredictable so it’s hard to make plans with my family. I must choose wisely, for I don’t have the stamina I used to. I now appear to operate more normally: I am back to driving a car, walking to the mailbox etc. Ah, the simple things we take for granted. But I still have health set backs and many challenging days. On my good days, I probably operate at around 80% of my former self.
And as anyone who has ever been chronically ill knows, diseases of this nature impact more than the afflicted. Its agonizing tentacles affected my whole family. My children felt not only the fear of possibly losing their Mother but they were also spending way to much time alone because I was too sick to care for them like I normally would. My husband has held strong, being my rock. However I do know how scared he was, not to mention how hard it was for him to carry my load for years whilst I was at my worse.
However, every breath is a blessing! A good attitude, a laugh and hope helps. I’m happy to know some of my sculpture work including a monumental life-size bronze sculpture - “Horse in Motion” depicting the Muybridge study - is prominently displayed at Stanford University and a life-size piece of my children playing “Joyous Blessing” is at Portola Valley Town Center. There are also other life-size pieces at private estates, including here at home. I also now enjoy watching my two daughters work, as they have now found their own creative gifts as artists.
I am so grateful for having good family and friends who have helped me through such challenging times. I know so many other Lyme patients suffer alone, as their families and friends do not understand this very complicated mysterious illness we call Lyme disease and the related symptoms. I really live a blessed life with my family and our menagerie of critters. I must stay healthy to enjoy it all.
Educating and Helping Others with Lyme
I am turning my devastating eight-year battle with Lyme Disease into positive territory. With the help of my husband and friends, together we have co-founded the Bay Area Lyme Foundation, a science-focused 501(c)3 non-profit organization located in California‘s Silicon Valley, (www.bayarealyme.org) which opened its doors at the beginning of 2012.
In an eight-year search of answers, I’ve spent endless hours researching the disease. My appetite for information led me to attending medical physician Lyme conferences. I read dozens of books and reached out to nearly every Lyme expert around the world to educate myself on ways nutrition and healthy habits can help support my immune system. I should have my PhD by now! I know just how bewildering and uncharted the Lyme disease frontier is. If I had been given accurate information when I was first bit, and gotten treatment right away, much of what I’ve endured could’ve been prevented.
With Bay Area Lyme Foundation, my friends and I want to help prevent the needless suffering of others. We want to make Lyme disease easy to diagnose, simple to cure and prevention common knowledge. We want to accelerate solutions for Lyme disease, making them accessible sooner to patients and make these new discoveries part of medical school curriculum and continuing education for physicians. It is unacceptable that patients must wade through the challenges of finding appropriate medical care. My wish is that others are comforted by hope as we work to find a cure.
Along with my other dedicated founding partners (three of whom also suffer from Lyme disease), I am standing up to Lyme disease and fully committed to this newly found non-profit organization. Regardless of being under treatment, hooked up to an IV pole or no matter how sick I felt, I’m determined to bring the most brilliant minds together to tackle this problem. We will find the right path through interdisciplinary scientific research and collaborative efforts with world-class entities. We need reliable testing, effective treatments and a cure. Philanthropic support, strong due diligence, strategic planning and utilizing the funds principle for operating costs will insure we have the longevity to complete our mission.
The Bay Area Lyme Foundation funded research studies at Stanford and met with a number of scientists, heads of departments as well as the Dean of the prestigious Stanford Medical School. As a result, we are pleased that Stanford established the first interdisciplinary collaborative working group focused on Lyme in the country, led by more than a dozen esteemed scientists and co-chaired by two faculty chairmen. They have convened to explore the many areas relevant to chronic Lyme and related tick-borne diseases: neurology, immunology, infectious disease, pain management, bioinformatics, psychiatry and psychology. It’s likely that these collaborative efforts will not only uncover answers about Lyme, but they may also positively impact many other related diseases, such as Alzheimer’s, Autism and MS. Results from one study also proves there is indeed Lyme disease in California along with other strains and co-infections. Co-Chair Dr. Mark Davis states: “We at Stanford will do our best to make Lyme history.”
I have also created and chair “LymeAid,” the Bay Area Lyme Foundation’s Annual Celebrity Benefit Dinner Concert which is an evening of Discovery and Hope. This year at our Spring 2013 Premier event hosted at our home, we raised over $400,000 and brought together some of the leading scientists, physicians and ecologists in the country as well as some of Silicon valley’s most dynamic business minds and philanthropists. The event featured Daryl Hall from Hall & Oates, who is also living with the challenges of Lyme disease. We are looking forward to our fall fundraiser, Polo for Lyme, at which we will be making a press release about exciting upcoming news regarding LymeAid 2014 featuring English Beat Live.
Though the CDC has recently reported there are 300,000 new cases of Lyme disease each year, 10 times more cases reported than previously thought, most people do not know what a Lyme patient goes through to regain their ability to function or about their chronic pain and despair. The public also doesn’t hear about the hundreds of thousands who didn’t receive early treatment or those who don’t respond to treatment, or those who cannot get help, can’t afford it or die.
It is heartbreaking that many Lyme patients live in silent despair. Discovering people in wheel chairs who have lost their jobs, homes and families after contracting Lyme and learning of the millions who still remain ill with this silent killer is what drives me to take action. It is why we started the Bay Area Lyme Foundation.
Onward
Along with the love and support of my family and friends, I keep going by focusing on my two big goals: competing at the World Championship Cutting Horse Futurity again and helping others who find themselves suddenly faced with this bewildering no man’s land they call Lyme disease. A bit of winning on all fronts will be icing on the cake!
And as a good friend of mine remarked, “That tick bit the wrong chick!”
By Lia Gaertner
In July 2013 at age 41, I reunited with childhood friends and we ran the Tough Mudder race (eleven miles of Army-style obstacles with a fifteen hundred foot elevation change in the Sierra Nevada mountains). At the finish line (after four hours!), I felt giddy and ready to go dancing. Mario (the shirtless one in the photo) wanted to go soak in a hot tub. Ironically, he is the ultra-marathoner, regularly running 100 mile, 24 hour races across mountain ranges; whereas, I am recovering from years of undiagnosed Lyme disease and co-infections…infected by two ticks from the two coasts of the United States.
I was diagnosed with Lyme disease and babesiosis in 2008 after ten years of misdiagnoses. I have been recovering ever since, and running the Tough Mudder was a feat perhaps more significant for me than for some of my teammates (although one is in remission from lymphoma, so I think we understood one another on a deep level). My five year healing journey has been better than my previous ten year struggle to get properly treated and diagnosed, but unfortunately, my journey through years of misdiagnoses is very typical of people with Lyme disease.
In 1997, after growing up in Oakland, California and studying environmental science at U.C. Berkeley, I decided to pursue my graduate education in ethnobotany on the East Coast. I turned down Yale and Columbia to attend Cornell University in Ithaca, NY, because the Utne Reader had just voted it “America's Most Enlightened Town”. I went to Marmot Mountain Works in Berkeley, bought myself a Himalayan trekking jacket, and then packed my bags. I arrived in Ithaca on a hot, humid August day. I walked to the gorges, for which the area is famous, and stood in awe of the waterfalls, lush forest, and shale fossils. That was the first of day of a thousand I spent in those forests, both recreating and working.
As a graduate student at Cornell, I taught forest ecology and other science classes, frequently taking my students on field trips through the woods. I also did field research, traveling all over the backwoods of the East Coast. At that time, upstate N.Y. was the most Lyme infected area of the U.S.A. Yet no one ever told me to be wary or to check myself for ticks at the end of the day in the field. I was working with forest ecologists, epidemiologists, and ethnobotanists, but no one was paying attention to the tick-borne diseases all around us. I took a class on alternative medicine and we discussed many sources of chronic illness, but never tick-borne diseases.
A year after moving to Ithaca, I had ‘the flu’ and then later began experiencing heart palpitations, arrhythmias, trouble catching my breath, and interstitial rib pain. The resident physician at the Cornell Health Center heard a loud, clicking heart murmur and insisted that I must have had it for years. Why had no other doctor heard it if it was so loud? She had no answer but referred me to a cardiologist- the first of many who gave me varying diagnoses from mitral valve prolapse, premature atrial contractions, mitral valve regurgitation, and pleural edema. I then asked the same resident physician about the rib pain and the trouble catching my breath, but her only answer was ‘stress’. Although I denied feeling stressed, she sent me to a stress reduction classes where we meditated while focusing our gaze loosely on our thumbs. I knew the physician was wrong and went to the library to do my own research. Since I had just taken several trips to rural Ecuador and Guatemala for research, I thought perhaps I had Chagas’ disease, which comes from a tropical bug bite and manifests cardiac symptoms such as endocarditis. However, my doctor thought that was unlikely, so I dropped that hypotheses-- but I was so close!
Over the next ten years, I finished my graduate degree, married my boyfriend from college, returned to California so my husband could attend medical school, and had two children. Along the way, my health deteriorated. Previously healthy and athletic, I proceeded to develop an odd cluster of health ailments such as cardiac abnormalities, swollen lymph nodes, rib pain, hyperaesthesias, hormonal disregulation, environmental sensitivity, severe anemia, anxiety, insomnia, poor memory, fuzzy thinking, intolerance to alcohol, bruxism, word-switching, appetite irregularity (starving one minute and nauseous the very next), difficulty modulating temperature, mold sensitivity, clenched hands and feet, and more. I would report all of these strange symptoms to my husband and my doctors but they could find no answers. However, because I am tough, I just kept going.
In the summer of 2008, my symptoms suddenly became severe. I couldn’t move my neck or head, had air hunger, intense migrating joint pain, and severe night sweats. My husband had just learned about Lyme disease from a fellow integrative physician and recognized some of these symptoms. He called the doctor and implored him to see me. The physician asked me to describe my constellation of symptoms and before I was even finished, he said, “There is no other illness that causes that symptom picture. You have Lyme disease and Babesia, both tick-borne diseases. I’ll send you for testing.” I thought back to a camping trip we had taken two months previously in Mendocino County, California, an endemic Lyme area. I remembered a red circular rash that I had seen on my chest.
My lab results confirmed a Lyme and babesiosis diagnosis. My CBC and blood work was flagged all over and my neurotoxicity and inflammatory markers were sky high, while my white blood cells and iron stores were dangerously low. As my husband and I learned about Lyme disease and co-infections, we realized that those first cardiac symptoms in Ithaca were from a Lyme infected tick bite (infected ticks can be smaller than a poppy seed and often produce no rash) and that the second tick bite in Mendocino added a new host of symptoms that finally made the diagnosis more obvious (i.e. joint pain and night sweats). We realized that I was the unlucky winner of two infectious tick bites on two different sides of the USA. Lyme spirochetes and other tick-borne co-infections are caused by very unusual organisms, capable of evading the immune system and persisting at low levels, gradually altering their host and integrating themselves into all body tissues. The heart is one of their favorite places to hang out (along with joint collagen, brain tissue, etc).
My Lyme literate physician prescribed oral antibiotics such as Doxycycline, Ceftin, Azithromycin, intramuscular shots of an antibiotic called Bicillin, as well as Mepron- an anti-malaria drug used to treat babesiosis, and intravenous vitamins. I took approximately forty pills a day of supplements and herbs, went to acupuncture, therapy, osteopaths, homeopaths, and more. I experienced severe Herxheimer reactions where my symptoms increased and I gained new ones, such as extreme fatigue, nausea, and severely swollen and painful lymph nodes. Finally, after a few weeks of Mepron, my heart arrhythmias and palpitations disappeared, my joint pain improved, and the malaria-like night sweats stopped entirely. I stopped switching my words and regained normal appetite and temperature regulation. I consider Mepron central to my recovery- even though it costs $700 per bottle, is seriously hepatoxic, and is literally the color, consistency, and taste of bright yellow paint. After a year of treatments, I was still tired and achy. When my physician was about to put me on IV antibiotics, I instead decided to try a week long green juice fast, complete with colonics and wheatgrass enemas. Shortly after the end of the cleanse, I felt better than I had in years. That was the final liver cleanse that I needed to purge the antibiotic and dead spirochete residue that had been making me feel so tired and had been clogging my system.
Four years later, I am well most of the time. I do boot camp or dance at least four days a week and I don’t take any supplements or medications. Because I eat well, exercise regularly, get enough sleep, avoid alcohol, smoke, mold and major systemic toxins, I feel fine. I am active in the Lyme research community and work, along with my Lyme literate physician husband, with patients who suffer from tick-borne diseases to help them recover their health. I am uplifted to see the recent interest in Lyme disease and co-infections, both in the media and the community. This past year, significant progress has been made towards better awareness, diagnosis, testing, and treatment of tick-borne infections. I am one hopeful tough mudder.
By David Skidmore
One thing there is plenty of room for in this world is another Lyme story! My guess is that as time marches on, there are going to be a lot more stories to come. Much like all the rest of us seemingly whiney bunch, I will start from the beginning.
It was autumn, November of 2009. I was going to go on my first deer hunt with my father since I was a teenager; I was fifty-five years old and managed to stay away from the big hunt for many years.
So there we were:my sister, her two children and my father surveying my sister's farm, or scouting the woodlands for signs of deer for the upcoming hunt. My nieces, not unlike the deer themselves, pranced through the woods like gazelle, flying over rocks and felled trees. I can remember just wanting to get back to the house and have a cold beer! Finally after an hour or so of this, we pinpointed our spots to wait for the elusive deer, and back to the house we headed.
With the very welcoming house in sight and still some daylight, I was close enough to my father to notice a little speck of something on his jacket.In fact as I got closer I noticed several specks. Much to my dismay, these specks had little legs and were moving! Ticks! Many ticks were clinging on for a nice warm meal.
We brushed ourselves and each other off feverishly, although my sister and her two very woodland-like children thought almost nothing of the whole affair. I on the other hand couldn’t have been more aghast if I had been lowered into a pit of live rats! I’ve never been a big fan of any creature that has the ability to stick you like a dirty syringe and suck out your life’s blood, and in return - and depending on the little bastard's prior host - leave you with all kinds of little parasitic wonders to wreak havoc on your body!
Having made it to the warmth of my sister’s house and that long awaited cold beer, suddenly it was all a moment of nervous laughter and a story for the grandchildren! By the way, the nervous laughter was accompanied now and then by a quick visual survey of my body with an occasional feeling about of my scalp. Now that the deer-scouting excursion was over, it was back to Brooklyn, NY where I live, for a nice hot shower!
To this day, almost three years later I will never forget being blanketed by the warmth of the shower and comforted by the thought that I did indeed leave those horrid little creatures back in Pennsylvania. Yes! I was thinking about them still! But as I washed my body, my hand struck a foreign object on the back of my left arm.At my age having had many showers, I was fairly familiar with my own body. This was something very new I was feeling. Whatever it was, it wasn’t budging - a mole perhaps that I had never felt before? Do moles pop up overnight? I don’t think so!
Staring back at me in the mirror was a very small black dot. But what really caught my eye was the very red, very large rash surrounding the black dot. With his head buried deep in my arm like an ostrich with its head in the sand, he, or she, was having a smorgasbord and slurping away at my life’s blood! This was going to end very quickly! I looked for and found the tweezers, got as close to his little head as I could, and very gingerly squeezed the tweezers against the sides of his head and gently pulled. His little legs writhed as if to say, "I’m not done yet!" There he was, at the tip of the tweezers and at my mercy. Like a little kid with all the meanness I could muster, I squeezed with vise-like pressure in hopes that his last thoughts might be “I hopped on the wrong guy!”
Upon giving him a burial at sea - in the toilet - I called my doctor who without examination called in to the pharmacy and requested a prescription of oral Doxycycline @ 100mg twice a day. I took this for the next twenty days.
Fast forward to January 2010, with the flu season still annoying some, I began to come down with what I thought was just that. Two or three weeks later as these symptoms persisted, I went back to my doctor, who gave me a checkup and decided that indeed it was a lingering flu and that we would have to ride it out!
Spring had passed but my “flu” hadn’t! And in fact the symptoms we’re not only getting worse, but new ones were finding their way into the mix. Aside from the usual chills, sweating, and nausea, I was getting leg cramps with head, neck, and chest pain that would seemingly move about my mid sectionand right shoulder pain. Something very weird was going on inside my body.
Among the many specialists, I was seeing an eye, ear, nose, and throat doctor for what now had become severe head and neck pain. A cat scan was ordered. I was called and told that all looked normal, but I was far from convinced. About a week later I was once again called by this same doctor and told that something had been missed, and that I had a sinus infection. I was put on a week of antibiotics. Now here is where it gets fun! I got a third call by this same doctor's office and was told that once again there had been a misreading of the films, and that I had an ominous-sounding something called “elevated brain swelling.” Without any explanation I was referred to a neurologist. I didn’t know what any of that meant, or how bad it might be, but I was happy to have something in the way of a real diagnosis that might explain what I was going through!
Did you ever walk into an office and meet someone and know immediately that you were not going to like this person? Enter my new neurologist! She should have been sitting in a meat locker, as her personality was like ice. As she spoke to me in what sounded like a very thick eastern European accent, I was convinced that she had a torture room behind a hidden panel in her office. She proceeded to inspect me without my saying much of anything other than to answer yes or no. She was not one for elaboration! She did manage to ask me what I was there for. I told her I was there forsevere head and neck pain with the possible diagnosis of elevated brain swelling. Upon her physical checkup, she looked at me and said exactly what I did not want to hear. "You’re fine!" She said that upon her review of the previous MRI, all was well, and she gave me a prescription for Cymbalta and sent me on my way with my tail between my legs.
Not long after, the pain got unbearable in the upper neck region, and I reluctantly went back to the original eye, ear, nose, and throat doctor who misdiagnosed me twice, or at least once. He called the emergency room without haste and arranged for a lumbar spinal tap for possible meningitis. I also told them that in addition to the head and neck pain with the flu-like conditions that endured, I was developing a whistle or hiss-like noise in my ears, or more specifically a sound that resembled a seashell that was placed on my ear and sounded like the distant ocean. I later came to know this sound as tinnitus.
They wheeled me into a room that was quarantined and was bustling with doctors and nurses all wearing masks. I felt like I had leprosy! They began by putting a line in my arm and intravenously started a bag of Vancomycin and Ceftriaxone in the event that I did have meningitis. If you have never had a spinal tap--I have had five of them--I would hold off as long as youcan on this one. I didn’t enjoy the first, and they only got worse with time and anticipation.
As fate or luck would have it, I did not have meningitis, although I would have been happy to have a diagnosis so I could be treated and hopefully get back to life! Once again, off I went to continue my quest to find what ailed me. If ever I believed in miracles, it was a day or two after my spinal tap. I miraculously was lifted of all symptoms, every last one of them! I’m not, nor have I ever been, much of a religious person. Three years of Catholic school and rulers on my knuckles may have had something to do with that. But the day I noticed my agony had disappeared, I did say a“thank you God." Maybe two of them. I enjoyed the rest of the summer not even thinking back on what had seemed an eternity of darkness, and pain--I was cured!
October 9th 2010 was a Saturday, and of all places I could have been enjoying myself, I was at work. But as I’ve always told my kids, “you do what you gotta do.” I remember sitting in my office and eating breakfast while working, and while sipping on my coffee I began to get a bit of discomfort in my left lower abdomen. I didn’t give it all that much more thought, but as the day wore on, not only did the pain intensify, it moved up into my right mid section. What now? As the day wore on, this pain began to branch out throughout my body. I started to get leg cramps, pain in my right shoulder, chest pain, and at some point the head and neck pain were back to remind me what I had been so happily missing. I was right back where I was in the beginning of the summer!
Within a short period of time, I was running on the hamster wheel again, in and out of doctor’s offices and hospitals, chasing the seemingly unidentifiable and very elusive whatever it was that plagued me!
Among the many new doctors I had encountered, given the multiple symptoms and more specifically the chest pain, I was referred to a well-known cardiologist and surgeon who among many things preformed Cardiac catheterization. Because of the intense chest pain I had a little plumbing work done to take a closer look at my heart. I of course couldn’t have expected anything else regarding the results other than the one word I was becoming all too familiar with - normal! This seemingly endless and uneventful chase was getting really old, not to mention embarrassing. I began to think like some of these doctors of one disease, hypochondriac. In my mind or not, I continued to physically get more and more sick!
I can’t remember which came first, the walking of my dog and forgetting what I was doing, or the running over to Target for a purchase. As I stood there with all these red jerseys running about, I couldn’t figure out where I was or what I was doing there. This was not only a new symptom,this was the beginning of a living hell. This is something that in my wildest dreams I could have never conjured up. Speaking of dreams, even they were altered to the point of trying in a dead sleep to scream out for help! This was all going somewhere that was a very dark and scary place.
As the headaches, body pain, and tinnitus continued to spiral me downward with all the neurological symptoms, I was referred to another eye, ear, nose, and throat specialist for the worsening ear sound and pain. She was a Godsend, very smart, very approachable and kind. After many visits and hearing tests, shefound that I had lost some hearing in my left ear. But because of the often-severe head and neck pain and general decline of health, she referred me to yet another ENT. She told me that there was nothing she could do for the tinnitus.
Looking back, I suspect she had her suspicions as to a diagnosis, which she kept to herself as this was not her specialty. She told me that the other doctor she wanted me to see was wonderful and was able to do “something” with the neck that helped many. “My neck?” I wasn’t convinced that manipulating my neck would do much for all that I was experiencing. But at this point I would try anything! I made an appointment to go and see what could have been my 25th doctor.
His office was very feng shui and had a warm tone to it, from the tea offerings in the waiting area to the receptionist who was pleasant and inviting - a soothing entrance for anyone feeling under the weather. The doctor came out to greet me. He was soft-spoken and seemed, when I shook his hand, a gentle soul. We walked back to his office, and my tale of illness began to flow as if a dam had been opened up. He listened carefully and with compassion. Aside from my merely telling him about my many ailments, he could see that I was a very sick person. He asked me the one question that had eluded all others for so long, “Do you ever remember being bitten by a tick?” My mind and memory, although not serving me too well, raced back to the reflection in the bathroom mirror of the little black dot with the big red circle on the back of my arm. "Yes!" I said. "It was November of 2009!”
Why did it take upwards of twenty-something doctors, including hospital visits and stays, to even pose this seemingly simple question? Even my own doctor who administered the Doxycycline for the bite never once mentioned Lyme disease. Why - when I was admitted to the emergency room and administered two very large bags of antibiotics for possible meningitis - did I miraculously shed all my symptoms for the summer of 2010? Why was this one disease so out of the realm of possibility, especially given the fact that - unlike many - I had the tick and the rash?
Having gone so long without a diagnosis - although some poor souls have gone longer - the Lyme disease had found a nice warm cozy place to thrive and do what it does best, destroy body and soul, and life!
Since seeing this one doctor who posed one of the more important questions in my life regarding Lyme disease, my health had further declined. So I was once again referred to another doctor, an infectious disease specialist. Unlike many doctors and their knowledge--or lack of it—regarding Lyme disease, I was lucky enough to walk into the one office of someone that not only understood the disease, but also was willing to go the distance in terms of long-term treatment.
Although I cannot say enough about this one doctor, it it was not a smooth sailing to recovery. While in treatment with him, I developed a blood clot from the PICC line that was feeding me the much-needed antibiotic Ceftriaxone. This led to two more hospital stays, one of which was from elevated spinal fluid which caused head pain that brought tears. Obviously none of this had anything to do with my Lyme literate and caring doctor, but the one thing in life I was not given is patience.
All I can say about my experience is that there are those who will find opportunity wherever we can find it, and the Lyme community presents itself with an endless pool of those of us who will do and pay anything to seek help. The opportunists who await their prey will devour their savings, their emotions, and more sadly, their hope.
This has been a journey that I - or anyone with Lyme disease - had not planned on. But the one thing I certainly never planned on was the lack of help or knowledge in the medical community. For the most part there are a lot of awfully good people out there serving the medical community. But something is very wrong in the research, lack of funding and treatment around the area of Lyme disease, as there are so many opinions with no seemingly right one! Much work needs to be done.
This world of Lyme disease (which in many ways still needs to be defined in terms of diagnoses and treatment) is a world of fighters. Lyme warriors if you will. Mothers, Fathers, daughters and sons all fighting to reclaim what so many take for granted: life. It is because of this fight that I – like many - yearned for a way to have my voice heard. I started a collection of Lyme cartoons known as Lyme Loonies and am currently the cartoonist for ILADS. I have done work for LymeDisease.org and I have found my passion.
By Judith Weeg
I am the president and founder of the Global Lyme Disease United Coalition (LDUC). Formerly a Health Educator with the Center for Disease Control (CDC) beginning with the AIDS epidemic, I write this story from a wheelchair due to misdiagnosed Lyme disease.
My personal fight with Lyme disease, took, and is taking many turns. I am a native to Iowa but was bitten in New York where I lived for 20 years. In the midst of 19 years of having severe Lyme disease, I have had to relearn to read and write. Off and on, I am in a wheelchair. I developed cancer. And I am still on earth to fight this battle. We have "nothing to fear but fear itself,” as President Roosevelt stated in the face of many odds.
When I was working for the CDC, I saw only concern and panic around the onslaught of AIDS. Today, the CDC seems to equally ignore the true science of Lyme disease. Lyme disease is the new AIDS. It is worldwide and affects children, adults, the elderly. It leaves no stone unturned in our modern society. It is passed by the bite of an infected tick (all species), fleas, biting flies, spiders, mosquitoes, and lice. Often the human victim never realizes the tragedy of the bite to come.
The Infectious Diseases Society of America and CDC control the world's attitude towards Lyme disease and they have systematically refuted science. What do we, as Lyme disease patients or Lyme-literate doctors, need to do to be heard? How can our need for long-term antibiotic treatment be recognized, until scientists create a cure for Lyme disease?
First, the true numbers need to be publicized. The CDC recently published new data on the number of cases of Lyme disease in the U.S. The numbers increased from 30,000 to 300,000. The data is ludicrous, and the CDC knows the numbers are closer to the millions in the U.S. At a 2010 Institute of Medicine meeting, Dr. Paul Meade of CDC declared Lyme disease an “epidemic” yet the truth of its global spread has been swept under the rug. Why? Our government health agencies need to provide a louder warning of the seriousness of the illness so the disease is detected earlier.
And then we the “people” need to be made more important than the “system.” We are Canada, Europe, Africa, the U.S., and the world. We have Lyme disease on all continents. We are sick! We are dying! The “system” entails government organizations like NIH, CDC and IDSA that dictate mainstream medicine. The “system” needs to recognize that the “people” are suffering and policy must change. The days of our Lyme-literate MDs being attacked by medical boards must end. The days of non-scientific guidelines by IDSA and CDC must end. The days of the lack of research into a cure for Lyme disease must end. As Sister Kenny, an Australian nurse, dealing with the Polio Epidemic of the 20th century so appropriately said: “The People are more important than the System!”
My disease, intensified by misdiagnosis after misdiagnosis, spurred me to create the LDUC. With LDUC, I made it my mission to save one person at a time. Our organizational motto is: "Whoever destroys a soul, it is considered as if he destroyed an entire world. And, whoever saves a life, it is considered as if he saved an entire world." [Talmud] The LDUC now has 150,000 Lyme disease patients involved, and we have support groups in most states and in Canada. We locate doctors to send to Lyme disease training and have telephone support groups for those who are home bound.
We have to work together to beat the epidemic of Lyme. Our LDUC logo says it all: Lyme patients holding each other's hands around the globe. Together, the “system” will recognize us.
By Dr. Enid Haller
Back in September 2012 I wrote Senator Blumenthal because our story was interesting, relevant and unfortunately not rare. Those of us struck by Lyme needed to stand up and be heard in this unjust environment of disorienting denial of this harrowing disease. I felt his office was making a difference or at least they were focused in the right area, and I wanted to give him more data points to use.
Before Blumenthal joined the US Senate, as Connecticut's Attorney General, he launched an antitrust investigation into the Infectious Diseases Society of America’s (IDSA's) 2006 guidelines regarding the treatment of Lyme disease. His anti-trust challenge to the IDSA resulted in an audacious intransigence and no change to the published IDSA guidelines for the treatment of Lyme disease, demonstrating that the IDSA -- which hides behind this concept "science" without respecting it -- has no regulatory oversight. But the fight set a tone and highlighted the center of the problem: the IDSA's lobbying and ongoing publicity campaigns (backed by the CDC and NIH), supported by the fraudulent and misbegotten IDSA guidelines, is the source of disinformation about Lyme disease, the source of denial of Chronic Lyme, and a chief component of the faulty, truncated disease definition which is confusing medical doctors and **ruining the lives** (bankrupting, causing irreparable auto-immune problems, causing interruptions to work and school and income, deaths and suicides) of thousands of families in the United States.
A remedy to misinformation, misdiagnosis and underfunding will only be found if a strong challenge can be mounted in the future. I knew Blumenthal, as a US Senator from Connecticut, was taking the Chronic Lyme injustice to Washington, and I wanted to help strengthen his voice.
My Letter to Senator Bloomingthal
Senator Bloomingthal,
My name is Dr. Enid Haller and I have a story to tell.
I was born in a small town in Pennsylvania in 1960 with Attention-Deficit Hyperactivity Disorder. Back then, no one knew what it was or how to treat it. I was one of the earliest kids to be put on the drug Ritalin and soon became dependent on it. Certainly the doctors didn’t understand ADHD, but the teachers didn’t either — to say nothing of parents. I got the impression I was stupid and thought it would be impossible to ever excel in an academic setting. I got little encouragement in school and soon realized I had to come up with my own strategies to get by.
Like most ADHD kids, I didn’t fit the school system very well. We learn differently, get bad grades and the situation makes it look like we’re not trying. No appearance is ever so misleading. I went on to study acting in college, a less academically rigorous course, and did well because it was geared more to my learning style. After graduation I moved to New York City. I was a working actress and model in the city for 8 years until I realized I was a functioning drug addict, addicted to prescription drugs and cocaine.
Recognizing the trap that had been set for me, I finally got into therapy and set a course that would change my life forever. I got clean from any substances and, with the help of my therapist, transformed my life. I was re-born you might say. I was happy to finally not be self-destructive any longer, and I was determined to help others to do the same. I realized that I had formed a wrong opinion of myself growing up. This doesn’t happen on its own, but back then if you didn’t fit in you were ostracized.
In 1990, at age 30, I decided to go back to graduate school and study social work. I easily got my Masters in Social Work degree (“MSW”) from Fordham University because, again, the program was geared to my type of learning. I starting working with patients with addiction problems, and soon realized there seemed to be a connection between ADHD and addictions because in other people’s experiences I recognized my own story of self-medicating.
I decided that this was what I wanted to study at greater depth, so I started to look into PhD programs in clinical psychology. I soon realized that the traditional graduate psychology programs were highly structured and strictly geared to the rigid type of learning I had experienced in grade school and high school. I then looked into alternative programs and found a wonderful school called Union Institute. They would allow me to structure my own program yet still be able to fulfill the APA requirements for Clinical Psychology. I was overjoyed and the experience was wonderful. They accepted my social work masters degree where the other psych programs would not, so I was able to finish the Union doctoral program in a reasonable amount of time, by 1997. My doctoral dissertation is on ADHD and addiction.
It took a few years but soon after I had achieved the degree the same professors and addiction specialists who had asserted that there was no correlation between these two disorders were now recognizing the truth. This was when I learned to trust my instincts.
That year I opened Behavioral Arts in Manhattan, a mental health clinic dedicated to helping children and adults with ADD and ADHD and help them to avoid medication as a first course of treatment (without rigidly ruling it out). After interviewing hundreds of alternative psychotherapists who shared my concern for over-medication, I started this clinic because I saw too many patients taking 8, 9 and 10 different kinds of medications at one time, prescribed by many different doctors, and half the doctors were ignorant the patients were on these other drugs. I saw children as young as two years old being prescribed Ritalin after a 10-minute interview.
Managed Care had arrived, and the model seemed organized to put all the privately owned clinics in Manhattan out of business. Most of my professional friends’ practices went under; the others were lucky to absorbed into hospital settings. As for Behavioral Arts we hung on for five years. When we closed our doors in 2002, the insurance companies owed us a half a million dollars. Every month they would change the codes and deny benefits to our clients who we kept seeing and for whom we offered an out-of-pocket sliding scale to fit their income.
It was scary to watch. I had caught the tail end of the golden era, as a social worker in beginning in 1992. We could bill insurance companies for work with patients and get reimbursed within a few weeks; it was like night and day, a difference between two worlds.
The patients suffered. I saw unlimited visits shrink to a limit of 20 per year and the paperwork expanded to a full time job, as if a form of persecution. I had to hire two people just to fight the insurance companies in their shifting parlor-game, and could not believe my eyes. At the end we tried to save the clinic by starting a nonprofit research wing called Behavioral Research, but it was too late. With therapists doing wonderful alternative work like neurofeedback, yoga and meditation, play therapy, family therapy, nutrition counseling, along with cognitive behavioral therapy, we had a 95% success rate while using no medication. The approach invoked all natural means of helping people learn how to heal themselves and keep themselves well. It was working.
Saddened that my dream was foiled, I reverted to private practice. A few years later, after never being sick a day in my life, I developed a cascade of serious physical ailments. In one year I was diagnosed with Graves Disease (thyroid), had eye surgery in both eyes, had knee surgery, breast reduction (to try and get rid of the chronic pain that had developed in my neck) and heart surgery. Physically and mentally exhausted all the time, I was falling apart and it made no sense. None of the many specialists I went to see tried to look at the whole picture or connect the dots. The situation was exhausting in itself and financially ruinous.
I had cut work back to five hours a week and could barely manage that, and was developing extreme anxiety and depression. Eventually I couldn’t work at all and we were unable financially to remain in the city.
Together with my husband, Sam, and nine year-old daughter, “Bean”, I moved to Martha’s Vineyard where we had vacationed for many years. We rented a house in the woods that first year in a tick-infested area. Every day we would pick ticks off ourselves and our animals and at night found them crawling in our beds. We thought nothing of it because no one had ever mentioned Lyme Disease. We had no idea that if you don’t treat thoroughly right after you’ve been bitten by a tick, you are in serious danger of developing Chronic Lyme.
The next two years was a descent into illness for all three of us, and no one could (or would) tell us what was wrong. Our Lyme tests all came back negative. I was sleeping 14 hours a day, Sam had such brain-fog he couldn’t function, and Bean was doing poorly in school, not being able to comprehend her studies and feeling tired most of the time.
Finally Bean just gave in and became bedridden right before her 11th birthday. She could not finish the last two weeks in school and seemed to get worse every day. They told us she had Mononucleosis and there was no treatment beyond rest in bed. She lay in bed all summer and her personality just seemed to ebb away before my eyes. She could not get out of bed to play and couldn’t even have a decent conversation with me.
When a friend then handed me the documentary film “Under Our Skin”, she had a certain knowing look in her eyes mixed with pained sympathy. As I watched this movie, the tears began to roll down my cheeks. It illustrated all our symptoms so clearly, my fear and devastation was mixed with an odd current of relief, hope and purpose. I knew something was very wrong, and now I had some guidelines to fix it.
I went to our pediatrician here on Martha’s Vineyard and asked her to please use a more sensitive test for Lyme because Bean came back negative twice with the hospital’s Lyme test — which at the time, we later learned, was performed through Imugen Lab. My good friend Dr. Debbie Herverly who had been suffering from Chronic Lyme for over 20 years insisted on the Igenex Lab in Palo Alto, California for reasons we later came to understand. The pediatrician reluctantly agreed to sign off on the Igenex test and the results came back in two weeks.
Meanwhile, Bean was getting sicker by the day. With the results in her hand, the doctor firmly declared to my face, “Negative for Lyme.” I asked, “Are you sure?” She said, “Absolutely, yes!” She had a funny look on her face and I requested a copy of the test for my own records and could she please send the results to two different places where we had pending appointments.
She agreed to send the results to the Rheumatology Department at Childrens’ Hospital in Boston — her recommendation — but she would not to send the results to Dr Charles Ray Jones — the only known Lyme-Literate Pediatrician in the world, working out of New Haven, Connecticut. She called him a “quack” and asserted the medical board (unspecified) was trying to take his license away. I assured her he was not a quack and asked if she had ever seen the movie “Under Our Skin?” She said she had not and furthermore had no interest.
It was then I knew, just knew deep down, she would be no help to Bean. I was shocked by the rigidity of her bearing and surprised by such a closed response, which I have never encountered in my life from any professional.
I sent my copy of the Igenex test results to my doctor friend who knew about Lyme and she said the tests were “very positive” for Chronic Lyme. She recommended we get Bean on Doxycycline as quickly as possible and keep her on until we see a Lyme-Literate doctor. She recommended Dr Jones.
Bean improved immediately on Doxy, she was getting better before my eyes.
We did fulfill the appointment at Children’s Hospital that week while waiting to get in with Dr Jones. A doctor — a very confident senior Rheumatologist who was teaching a medical student — examined Bean quite thoroughly for an hour and said — from the perspective of arthritis — she seemed fine, no signs of Lyme Disease. I showed the doctor the Igenex test and she said she had never seen one and did not know how to read it. The doctor said, “We really don’t know much about Chronic Lyme,” which I am now, much later, able to assess as a sort-of-truth and a skillful way of dodging an unproductive conversation.
After putting our name on the cancellation list with Dr. Jones, we finally got an appointment. In the office, he looked at my daughter’s Igenex test, took a full history and made a thorough exam. After an hour and a half he said, “Your daughter does not have Mono, she has Chronic Lyme. And she has had it for at least two years.”
I cannot tell you the relief felt being with Dr. Jones and hearing his confident assessment. Finally this was someone who could help us and seemed to understand what was going on. From that day forward my daughters’ symptoms started going away. No more headaches, no more stomach aches, no more fatigue or nausea. It seemed like a miracle to me. Everything seemed to be reversing and her personality began to resurface. I could not believe how fast the four different antibiotic regimen that Dr. Jones applied began to work so fast. He also treated her for Babesia and Bartonella, two co-infections common with people in New England and on the Vineyard that no one had even tested her for.
Now with Bean on the mend, it was time for Sam and I to get tested for Lyme again — this time through the Igenex Lab. We sort of could and could not believe it when the results came back positive (note that at this time we are still pretty naive about Lyme). We immediately made an appointment with Dr. Richard Horowitz in Hyde Park, New York. He was able to see us quickly and we started to get better right away.
Our story is unusual because we’ve been lucky. My close friend who knew everything about Chronic Lyme shared her knowledge with me every step of the way. I just did exactly what she said and we all started to get better. Bean was the first to recover well, probably because of her age the relatively short time she had been infected. Sam has had complications with his gut and Candida, but in reviewing his symptoms he determined that his Lyme goes back to his earliest experiences on Martha’s Vineyard as a child and after sequential summers in the Adirondacks. He was able to track his symptoms back to age 14 (1978) when he had bells palsy in his face and other neural, visual and cognitive impairment episodes in middle school in New Jersey.
For myself, I think my first signs of Lyme appeared in the years leading up to 2005 when I was first diagnosed with hyper-thyroidism. All those unexplained illnesses finally made sense. There is a complete sense of relief when you discover the mystery of your illness because then you experience a release from passive helplessness to a positive, proactive self-determination. Most people who discover this are unable to go to the proper Lyme-Literate doctor due because there aren’t enough of them nearby and because insurance often does not cover Lyme-Literate care. Additionally, since Lyme-Literate doctors have been forced to charge out-of-pocket, even those who have willing insurance coverage can’t afford the months of financial “float” before reimbursement. Lyme is full of horrific Catch-22 situations.
It is impossible to sum up this experience. The systematic denial of Chronic Lyme is a black shame on our country and on the individuals still promoting the notion.
Our response has been constructive, however. I have used my experience in psychology and background in group and family therapy to run the Martha’s Vineyard Lyme Support Group which meets monthly near the West Tisbury Free Public Library, since its inception two years ago. The members of the Support Group have contributed immeasurably to my understanding and provided examples of courage and determination, and together we have developed a powerful knowledge resource that is helping Islanders every day.
Since learning so much that can help others avoid the dangerous time-delays to treatment, we’ve opened the Martha’s Vineyard Lyme Center in our guest house here in West Tisbury and are handing out Lyme test kits and keeping office hours so that our Island neighbors (15,000 population of year-round residents on the Island) have spontaneous access to good and useful information for taking their health into their own hands.
Thank you for providing a forum for the truth to circulate.
Enid Haller
West Tisbury, Massachusetts
September 2012
Update On Our Health
My daughter Bean is 15 and a high school sophomore, feeling 100% and back to riding horses and doing well in school. My husband Sam is back working, photographing – and just got back to hiking -- and feeling well while working out his residual gut issues. My own health is now in my hands: I can control my energy level and performance when I maintain the diet, detox and immune support protocol that Dr Roni DeLuz customized for me. We are all success stories from Dr Richard Horowitz' practice and closed the gap after the aggressive antibiotics with the crucial help of Dr Roni, a naturopathic doctor, registered nurse and PhD -- and our saviour -- here on the Vineyard.
By Jim Wilson
Lyme disease is something I knew very little of in 1991 when living in Dartmouth, Nova Scotia. So when a strange looking eight inch rash appeared around my naval in early June of that year, it set off no alarm bells. I had no symptoms of illness, so I never gave it a thought, believing I had just reacted to some plant or dust from doing spring yard clean up. Our house was for sale so I was doing more than just the normal clean-up.
Time went on and the house sold so we began our trip across Canada, moving to British Columbia. It was on that trip that strange symptoms started to appear beginning with numbness and tingling in my legs. And I found I had to pull over for a nap every two hours or so which was very unlike me. Over the coming weeks, months, then years more confusing symptoms came. But on a daily basis I never knew which symptoms may be more or less severe.
I had 24-hour-per-day, 365-day-per-year nausea, extreme fatigue, a brain/body disconnect, brain fog, short-term memory problems, bowel and bladder problems. Words that I used in normal conversation sometimes escaped me. My legs became unsteady and rubber like, and my knees would just give out without warning. I couldn't get rid of a constant inner vibration similar to what one might feel if they placed a vibrating tuning fork at the top of the spine. Sparkles, floaters, and waves appeared in my eyesight and there was greyness to my vision. I also experienced joint and muscle pain, but it migrated over time and ranged in severity. Sudden onset spasms and jerking motions would occur in my hands, arms and legs. My heart would palpitate, and my lymph nodes in my groin and armpits were consistently swollen and achy. For no apparent reason, my scalp would get sore bruised-like regions. Symptoms waxed and waned, came and went, then came again. And depression moved in, either as a symptom of Lyme disease or as a symptom of being so ill day in and day out.
After three years of revolving door doctor’s visits, that included just about every specialty, I achieved a mixed bag of theorized diagnoses, but I got nothing concrete. And no effective treatment plan was suggested other than symptom management drugs - some of which were expensive and powerful. Finally the doctors suggested this may be all in my head. They never responded when I asked them how I made my lymph nodes swell to the point they removed one from my groin sending it away for a biopsy (results were a normal functioning lymph node fighting an infection of unknown origin).
My wife knew this was not something manifested by my mind so she began a search at our local library for information on chronic diseases. It was then that she found a book a woman had written on Lyme disease and in that book was a picture of the rash that I had had around my naval three years earlier. The book related a blueprint of my health over the previous three years.
With this new information, off I went to the doctor, book in hand. No way, Canada did not have Lyme disease. The doctor begrudgingly tested me for Lyme disease but it came back negative, followed by a confident, “I told you so” from the doctor. With the information in the back of the book, we contacted a USA Lyme society and through them found a doctor Dr. L. Kindree, who then was practicing in Squamish, BC. He became "Lyme disease knowledgeable" when it was discovered that his daughter, Diane Kindree, had contracted Lyme disease while in Europe. Diane had started the Lyme Borreliosis Society of British Columbia in 1989.
Dr. Kindree clinically diagnosed me with Lyme disease and prescribed antibiotics. I felt worse for the first week or two, but at week 3 or 4 it was like a rebirth. My energy came back, my brain straightened out and all the strange symptoms cleared over time. I felt great so long as I was on the antibiotics. But each time I stopped, my symptoms would return within weeks. After years of trial and error in antibiotic choices and dosage, I was finally able to stop without relapsing. Dr. Kindree had retired by then.
In 2001, my daughter who was in grade 12 contracted Lyme disease here in BC as did some other teens at her school within a year or so of each other. Her heart was affected quite severely so she was immediately put on three months of antibiotics by a local general practitioner. At the end of the forth week I went to our hospital pharmacy to pick up her next weeks' IV antibiotics (this was administered at home) but was told that an infectious disease doctor who had never seen my daughter had said 4 weeks was enough. I argued the obvious to the head of the hospital... that infectious disease doctor could not stop the treatment prescribed by another doctor for a patient he had never seen. I suggested if I did not leave with the antibiotics in hand, I would return that day with my lawyer. I left with the antibiotics and there was no more interference in her treatment.
My daughter finally began to feel well again at about the eighth week. We wonder of course what would have happened to her if that infectious disease doctor had won and her antibiotics stopped. She continued on oral antibiotics for another two years until all her symptoms resolved. She has been off all antibiotics and doing well for about a decade now.
What were the odds of two people in the same family, a decade and 5000 kilometers apart, getting a disease we were told was so very rare in Canada? It was too much of a coincidence for me to accept, which prompted my to start the Canadian Lyme Disease Foundation (CanLyme.com).
I knew out of the gate that we required a Board of Directors that was science and medically oriented so I sought out researchers at our universities who had anything to do with Lyme disease and invited them to join. Most agreed. Our founding full Board consisted of a Ph.D. zoologist, the retired Head of Vector Borne disease from the BC Center for disease Control, a Ph.D. molecular biologist, a Ph.D. neuroscientist, a Ph.D. neuro-psychiatric researcher, a general practitioner physician, an infectious disease doctor and 4 others, including myself. The Board has changed some members over the years but is still focused on the science.
CanLyme became a registered federal charitable organization in 2004 after our website went online in May of 2003. In that first month the website had only 37 hits but by the end of 2003 the site was receiving 15,000 hits per day. I had been right: it was no mere coincidence that both my daughter and I contracted a very rare disease. In Canada, the disease was everywhere. It was the diagnosis that was rare.
CanLyme has undertaken a wide variety of activities to increase awareness, including putting on medical and science seminars or coordinating with others to arrange them. We communicated with provincial and federal health care officials, continuing to put pressure on them to improve testing as well as public and physician education. To broaden our knowledge and to keep current we have connected with scientists and doctors on several continents.
Publicity has been a major tool in getting our message out to the public and health care professionals. The medical bureaucracy is very slow to latch onto to fairly new and evolving diseases.
Much of the education given to doctors over the past two decades in Canada has been wrong.
Lyme disease is not rare. The bull’s eye rash is not the hallmark symptom as it occurs in only 9% of cases. It is not easily cured with 3 weeks of antibiotics. As shown by the research on monkeys, the bacteria can survive even 3 months of antibiotics, hence the reason so many people require longer term antibiotic therapy. Health Canada finally admitted in the fall of 2012 in the Canadian Adverse Reactions Newsletter that their Lyme tests were incapable of detecting the wide diversity of the Lyme bacteria we now know we have. Tens of thousands of Canadians have been tested over the past 25 plus years with a faulty test. Canada has no idea how many of those tested may or may not have had Lyme disease.
Ontario based researcher and Lyme disease victim, John Scott, has published several papers showing the diversity of the bacteria we have in Canada. He established the Lyme disease Association of Ontario in 1990 and has also been largely responsible for showing us it’s the migratory birds - such as our friendly robins, sparrows, finches etc. - that are rapidly moving the infected ticks into Canada. Yet doctors and the public were (and still are) led to believe Lyme disease only occurs in a certain few regions.
CanLyme continues to challenge the status quo as well as those who hold on to the status quo. We were excited to work over the past two and a half years with the BC government as it set up the Complex Chronic Diseases Program housed at the BC Women’s Hospital in Vancouver. This should have been the shining light for Canada to move Lyme disease knowledge and treatment here out of the dark ages. But in the end, the old-guard dogmatists who held the power refused to think more broadly about the sources of Lyme Disease. As a result, this past summer CanLyme announced we had to withdraw our support of the program because little real help was being offered for a Lyme disease patient.
But we have had some wins and many sticks in the fire on many fronts which we hope over time will affect real change. For example, CanLyme board member Rossana Magnotta, founder and owner of Magnotta Winery in Ontario, became involved with CanLyme in 2007 after her husband Gabe was diagnosed. She shared our goals for establishing a human research program and in addition to joining our board, she also founded the G. Magnotta Foundation for Vector Borne Diseases in Ontario. Working together, CanLyme and the G. Magnotta Foundation have successfully partnered with Toronto’s new Humber River Hospital so that when this hospital opens in 2015 it will have a state-of-the-art facility with a first-of-its-kind human tissue research program.
As we at CanLyme and now at the G Magnotta Foundation push forward, the old-guard bureaucrat’s grip on the Lyme disease matter in Canada is slipping. Science will reward us all with a much brighter future for vector borne diseases.
By Brian Morris
Hi, I'm Brian Morris and at 57 years-of-age, I'm an on-again / off-again Chronic Lyme Disease sufferer for over 25 years now. I was first diagnosed with Lyme back in 1988 while living in Westchester County NY. They kinda didn't know what it was then and that's how they kinda treated me: without a clue or a map, making stuff up as they went along.
I was told I had Lyme 4 or 5 different times over the next 4 or 5 years, but I know now that simply wasn't true. I had it only once; it just never really went away. And then, as is their wont, the spirochetes ran and hid. And for 20 years I was okay, yet thoroughly unaware that this disease was fortifying itself inside me all the while even though I thought I'd already beat it.
Cut to June 2011: I woke up one morning and I just knew they were back: "they" being the spirochetes. And they were bigger, better, faster & stronger than ever before. Back with a vengeance. There's a certain kind of pain unique to the Lyme sufferer. And this time, it brought me to my knees. I couldn't get out of bed, and was in horrible, horrible pain. I developed a nasty cardiac condition and was constantly in a Lyme-induced brain fog. My body and soul started breaking down, leaving me devastated and hopeless.
As I say, this was the greater New York metropolitan area: not Mayberry R.F.D. I was misdiagnosed, mistreated and mis-medicated across the board in NYC, Mt. Kisco & the Center For Infectious Disease in Greenwich CT….where I was summarily dismissed by a lyme-illiterate clown who told me I couldn't possibly have Chronic Lyme Disease because such a condition did not exist. Malarkey.
One week later, I was in Pocatello Idaho where a very enlightened chiropractor pointed to my ehrlichia levels and noted that they were seven times higher than the allowable limit in a human body. Ergo, Lyme. Chronic Lyme. Bad.
Western medicine had thrown every narcotic, every painkiller in the book at me. Instead of treating the core issue, they treated the fringe symptoms. And I got hooked, badly on painkillers. To the extent that I stroked, twice; flatlined, once….and just when I thought I'd hit rock bottom, I was stunned to find I was standing on a trap door. I fell even harder, further into the abyss. My addiction had turned me into a monster, and I was no more liberated from Lyme than on Day One.
I am now clean, though at a perilously heavy price. And the "addict mind" is forever ingrained into my psyche. But, good news: I am here to tell you that there is hope. And just as a physical detox has been an important part of my recovery, a spiritual awakening has also been an important foundation for my rebirth. I am now in touch with the 'grand high exalted mystic ruler' and by that I don't mean god. But rather that certain intangible higher power that makes sense out of a life I'd long ago left for bankrupt. Sometimes, it's my dead brother speaking to me from beyond the grave that Chronic Lyme and all of its unfortunate side effects (addiction issues being but one) put him in; some days it's the beauty of an idea I hear in one of the many recovery and support groups I attend on a daily basis; other times, it's hearing Johnny Cash cover the Depeche Mode classic, "Personal Jesus." Whatever!
IT is what it is and what it is is what gets me through the day. And night. That and the fact that I now lean heavily on a holistic approach to my Chronic Lyme affliction. Lyme-literate naturopaths and chiropractors will empower you: they will teach you enough to know what to do to your own body. And what not to do. Self-empowerment is the best way to heal. I am now pain free and drug free.
You don't beat Chronic Lyme Disease.....you only hope to contain it. And I'm living proof that you can. Ain't life grand?
