Everybody is pretty familiar with basic Lyme disease. Acute Lyme disease. The kind that you get when you either find a tick on you, when you get a bulls-eye rash, when you go to the doctor and he or she gives you 28 days of antibiotics and you are fine. We all know that it isn't always that simple. I have Late Stage Lyme Disease, also called Chronic Lyme disease, or Stage III Lyme disease, or persistent Lyme disease. Sometimes this means that despite antibiotic treatment, you've had it for many years. Sometimes this means that the disease has persisted despite treatment. Sometimes this means that the disease existed for many years prior to treatment. In my case, it means all of the above. In any case, you don't always see a tick on you. You don't always see a bulls-eye rash (less than 40% do). And you don't always know that you have Lyme disease. Once it becomes a case of Late Stage, or Stage III, or Chronic, you are in for a tough, life-long, physical, medical, emotional and financially expensive battle.
By trade, I am a school principal. As a young administrator, I joined every association I could. Became secretary and president of a local association, bringing administrators together to network and meet other administrators each month. I enjoyed meeting people, learning, being involved. I had boundless energy. I volunteered for committees, spoke at workshops, mentored new interns.
I earned my doctoral degree in 2003. “You are doing this so young,” all my colleagues celebrated, “before you have family, what a great time to do it!” But I didn't plan it that way. I just loved to learn! I had energy, enthusiasm, ambition. I wanted to be Oprah, I wanted to meet everyone, touch every life, save the world. I was always over scheduled, each foot in a different activity. I walked across the podium at age 35, with a feeling of accomplishment and pride.
I married my husband, Dan Dorow, and earned the right to call myself "stepmom" to his two children. We skied, golfed, biked, and enjoyed theatre by the sea. That summer, I started a new principalship. I was healthy, running daily, leading my team of over one hundred teachers and staff, and - after a taste of mentoring an administrative intern, I was ambitious enough to take on a part time position as a college lecturer at Simmons College in the Graduate School of Special Education. We enjoyed our lives, traveling, networking, walking our dogs in the woods and being involved in the school community.
Dan was an avid hunter. Fisherman. Golfer. I loved to explore the woods, run at sunset. Had either of us taken a tick off our bodies? Once or twice, nothing that we worried about back then. Had either of us ever had a bulls-eye rash? Not that we remember. It was a busy, fast paced, beautiful life.
Suddenly, I found myself sobbing in a lawn chair in the middle of my yard for reasons unknown. I would sob endlessly, knees to my chin, wondering what was happening. During my first pregnancy I became so incredibly ill that I could no longer teach Graduate School classes, giving up something I dearly loved to do, because I spent more time spinning in the stairwell, holding onto the walls, violently ill, needing to be rescued, parking my car and random driveways with disabling migraines waiting hours for someone to find me. Along with some new thyroid, blood pressure and other issues I had to learn to deal with in my life, my newborn son spent most of his in the hospital with unexplained fevers, rashes pulmonary issues and rare afflictions. It was after my second child was born that I began struggling from profound fatigue and varied bizarre medical conditions. I had become neurologically challenged, with a brain that failed me in a job that required me to be at the top of my! cognitive game, in the public eye, in front of a school board, and most importantly with the direct community that I served. I had no choice but to resign. I spent months at home wondering where things went wrong. Had I lost myself forever? It wasn't until October of 2010 that I became so severely physically ill that medically, my questions were finally answered. I had Late Stage Lyme disease. By then my career was gone. Doctoral degree? No longer useful. My identity? Lost.
Late stage Lyme Disease is a complex disease, especially in young children. My children are 3 and 6, and thought to have contracted it in utero. We suffer from Stage III Lyme and co-infections, Babesia, Bartonella, Mycoplasma Pneumonai and Rocky Mountain Spotted Fever. So far, we are being treated with oral antibiotics and holistic treatments.
A challenging part of having Lyme disease, for me, is that I look just like you. Looking at me, you might never know I had it. There are some days I feel totally normal, and on these days it makes it really difficult to explain to others when they look at me and ask what the big deal is about Lyme. But these days are few, and mostly are limited to hours within the days. More typically there are days that I barely brush my teeth and I have to crawl back into bed. There have been days I have called my husband to come home from work, because I couldn't get off the couch to get my baby a bottle of milk from the kitchen 20 feet away from me.
I was found to have Lyme disease in late stages, which means for me that I have had it for at least two years (more likely, at least 7). My two pregnancies are what pushed the dormant state of lyme into an active state.
Having the disease for so long makes it more difficult to treat. Having co-infections complicate your treatment. One of my biggest life changes is that I must sleep, and I do sleep, usually from twelve hours every night - and I am still tired. By 3:00 p.m., I need to be home, I have hit the wall. The exhaustion that Lyme disease sufferers have is comparable to that of congestive heart failure. It would not abnormal for us to sleep 20 hours a day.
A lot of the time I am just not feeling well. I have compared the nausea I have to that of 24 hour morning sickness. The cramps to that of early labor. The sciatica to pregnancy pains. I can"t describe the incredible joint pain that I have, that comes and goes from my fingers to my knees to my hips, so I grit my teeth and ignore it. When the pain hits in flashing bolts from nowhere, like an ice pick to my side of my head, I sometimes react by crying out and I want to reach out and hit something myself, to give the couch or the table a swat, an automatic reaction to the incredible searing pain that goes through my body. I have had days where I sweat for no reason - the sweat just seeps out of the pores on my face in rivers. At night, I sometimes wake to change my clothes several times. I can have full body tremors and different parts of me twitch at almost all times, sometimes making it difficult to sleep at night, as exhausted as I am. My muscles bother me with deep pain, traveling from leg to leg, feeling like they are being eaten from the inside. The soles of my feet ache unbearably, the skin on my back burns. I am confused, sometimes I can't follow conversation, and I have memory gaps. Most of the time, I live with a terrible haze in my head - lyme sufferers know this as the "lyme haze". I have lived with it for so long; I've only just started to recognize it now that I've started to begin to have some haze free days. Most of the time, I have a stabbing pain in my legs, and it can be difficult to walk more than 200 meters or a flight of stairs.
Headaches last for days, sometimes stabbing, intense pain in my head, feelings like I'm being zapped by electrical current, and along with cognitive difficulty I have incredible trouble with word retrieval. Doing a load of laundry is an immense task - I sweat just folding a few items of clothing. At times, my arms and hands tingle and go completely numb. My ears ring constantly, loudly, or they shut off completely and I can't hear a sound at all. Which can be a relief, because sometimes I leave the table in tears - the sound of forks and knifes hitting the table are too much to bear, sound is so magnified. I've gotten lost driving more than twice in familiar places, like the neighborhood I grew up in. I'll forget how to do routine things, be unable to follow simple directions, be reminded by my six year old three or four times to feed him lunch. There is vertigo, fuzzy vision, panic attacks. I have crushing chest pain, and a fatigue so strong I can't lift my head up once the afternoon rolls around. I had a very scary day when my body was shaking, my skin was prickly, and then I began having hallucinations of bugs crawling under my skin. I sat in front of a mirror so I could see otherwise, tears rolling down my face.
There are days I wake up feeling hopeful, pack my kids in the car, and fill the day with as many fun activities as I can fit in before I crash. Fortunately, I have an incredible support system - brothers and aunts who I can call at odd hours for a shoulder to cry on, the adoring grandparents who help me take care of my kids, my husband who checks on me constantly. We joke about the days I put laundry in the oven, milk jugs in the microwave, dirty dishes in the fridge. Gone, thankfully, are the days that I would sit in a lawn chair sobbing for reasons unknown to me.
I'm in my third year of treatment, for a disease that I didn't know I had, one that caused symptoms for years. A disease that ultimately led to me leaving my job when I was so sick and just couldn't perform well, when those symptoms for my undiagnosed lyme affected my brain and my heart and made my life so complicated.
Lyme is no fun. It isn't an easy disease, a simple disease to cure with a 30 day treatment. When I hear of someone being diagnosed with Lyme disease, I cringe. I cringe because of the unknown, the learning they will have to do, the politics they will face in getting care. Many people are walking around out there with Lyme disease and they don't even know it. They will get diagnosed when they are in late stages, after having it for years, like I did, when it is so much more difficult to treat.
Two years ago, one of my children was bitten by a tick. The doctor shrugged it off, even when a rash occurred. I changed doctors. In the end, I found out that both my children have lyme anyway, having been exposed in utero and/or via breast milk. My symptoms are nothing compared to what I witness my children struggle with on a day to day basis.
My children suffer joint and muscle and belly pain that they don't understand, incredible fatigue that leaves them laying on the floor for hours in between minutes of playtime while their friends play around them, times that they sob for unknown reasons, times they can't get their bodies under control, and insomnia at great stretches. There have been times my son could not walk on his own feet, there was a period of ten days that he could not talk.
For my children, it is a different story. It is difficult to find someone willing to treat a complex, chronic pediatric case. We've had to travel across states for care, and this care is never covered by insurance. And even for myself, beyond typical care, to find appropriate care in a specific discipline (neurology, psychotherapy) is nearly impossible.
Lyme disease is a very political disease. It is a very difficult life to live, a life of pain, a life of dealing with the politics of care and sometimes with not only doctors but even family members who may not believe that your pain is real. Families lose their incomes. Families split up from the stress. Families lose their homes.
What I wish for you to know is that ticks do not have to be on you for 24-48 hours to transmit disease. Ticks can transmit upon attachment - even before attachment according to the most current research (See 'No Picnic' by PJ Langhoff, 2013). If you are sick and think you have Lyme disease, even if you have never seen a tick on you, it is critical for your doctor to treat the symptoms simply because we live in an endemic area and the chances are likely that you were bitten by tick. It is easy to get bitten by ticks. In fact, a nymph tick is as small as the period at the end of this sentence. These can fool even Lyme advocates like myself who search their kids neurotically every night for ticks - just a couple weeks ago my daughter had nymph tick on her cheek, and I attempted to brush this piece of "dirt" off several times before I realized it was stuck on her face and actually a tick. Lastly, if you do find a tick on you, get the tick tested! Getting a tick tested is a reliable way to find out whether or not you've been bitten by an infected tick and need to be treated aggressively. The testing for us humans are, at best, highly unreliable. If you are sick and the test comes up negative, it does not mean you do not have Lyme disease. Legislation is starting to be passed in our neighboring states requiring doctors to disclose this to patients. Lastly, if you do find yourself diagnosed with Lyme disease, join a support group. Your network is invaluable for your recovery. The best thing you can do from this day forward is wear your tick repellant every time you go outdoors. Shower immediately after spending time outside, and check yourself nightly for ticks. Lyme disease, and the suffering that comes with it, is real. Protect yourself and most importantly, your kids. All it takes is one tick bite for a lifetime of debilitating illness.
Thaiadora Katsos Dorow
For more information, please see lymedisease.org, TBDA.com, UnderOurSkin.com, www.drjoneskids.com or my own personal facebook page https://www.facebook.com/WhatsTheBigDealAboutLyme?ref=hl