I was bitten by a tick when I was ten. It's the only tick bite I remember, though a large number of those with Lyme don't remember a tick bite. There's no way to know if this bite or another was the culprit. I do remember a rash on my hand the summer I was pregnant, and I now wonder if it was from a tick, but there is no way to know. I always had weird medical things happen as a kid though, so we have wondered if maybe it's been dormant for many years. Your immune system has an amazing ability to keep things in check (even if you've been given a taste of that forbidden formula). And your immune system is amazingly susceptible to stress, which arrived on my, well, ashy, crumbling doorstep when I was eight months pregnant.
I had Kellen and went into my six-week checkup, where they did a pap, which came back abnormal (yeah, my fall pretty much sucked), and gave me a flu shot. Four days later (and four days after returning to teaching) my face stopped working. I was home nursing Kellen (or trying) and tried to smile at him, at which point I realized I couldn't move the right side of my mouth. Earlier in the day I had noticed that it felt like I was talking with braces on, like my lips were having to make way for an obstruction on my teeth, despite not having had braces in well over a decade. That morning I drank orange juice that tasted dull as well as had a Starbucks sandwich that made me question their place as a food establishment. It turned out that my taste buds were not working on the right side. After I finished nursing Kellen I decided to go back to school to finish teaching. I was really scared but didn't want to deal with it at the moment (because the only two options I could think of were a stroke and brain cancer). As I was driving down the road I lost my ability to blink my right eye. I turned around, and we went to the hospital.
The good news is that it wasn't a stroke or brain cancer, though the way the Dr. told me it was "just" Bell's Palsy made it seem so benign--as though I hadn't just lost full functionality of one side of my face and now looked like this:
"Are you sure nothing else is wrong?" I asked the ER doc. I just couldn't fathom that the nerves in my face would stop firing just because they felt like it. The doctor assured me that nearly all cases of Bell's Palsy are spontaneous and have no other underlying cause than a small virus. (Had I lived in the Northeast, it is likely I would have been tested for Lyme then, as Bell's Palsy is common in Lyme and the first symptom of it moving into your brain, when things get really dicey.) They gave me anti-virals and steroids. (It was because of this I stopped breastfeeding.)
Dan and I decided to head down to San Diego. I had taken a leave of absence from work because I was overwhelmed. The stress of our house burning down in a fire and the rebuild was compounded by this new development, and I knew that I was spread too thin. It has always been hard for me to walk away, and while it was sad, I am proud of my ability to say, "I can't." We left the day after Thanksgiving, a trip that was nearly thwarted by an incredible and overwhelming sense of anxiety. I couldn't sit down at all because I felt so antsy and uncomfortable. It was one of the only times I've ever had the urge to scrub a floor. It's unknown if this was a natural progression of the Lyme or because I had been prescribed Zoloft to deal with the PTSD. It's been posited that SSRIs (selective seratonin reuptake inhibitors) may actually exacerbate Lyme symptoms in some people (many also find them helpful).
In the Spring of 1999 I was first exposed to Lyme (so the doctor thinks). The bite was on the top of my head, and when I went to remove the tick I was not able to get the head. In fear of Lyme Disease or infection I went to my doctor immediately to get the tick removed. What a process. It took 3 nurses and a doctor to scrape my scalp in an effort to remove the tick's head. I didn't notice any symptoms for about 6 months.
My husband and I were married in October of 1999 and soon thereafter I started having severe stomach problems. I was sent to the hospital a few times for extreme pain, and the diagnosis was pretty grim. I was told that I had a very severe case of Endometriosis and that it would be potentially difficult to have children. That diagnosis was very difficult to hear.
I began to work for a chiropractor in the Spring of 2000, where I was given consistent adjustments. The x-rays showed severe misalignment of my neck to the point where the vertebrae were bending the wrong direction. The x-rays also showed Scoliosis progressing in my lower back. The adjustments helped my pain tremendously.
As the year went by my stomach continued to be the major issue. In the winter of 2001 the pain in my stomach started to worsen. I was once again sent to the ER, with concerns that it was my appendix. Test proved otherwise and again it was a big mystery.
I became pregnant in December of 2001 but miscarried within weeks. I became pregnant again not too long after but suffered during the entire pregnancy with terrible morning sickness and back and neck pain. I figured these ailments were just part of the day by day hormonal changes in pregnancy so I took no concern for them. My son was born in October of 2002. I seemed to recover very quickly from the birth and my stomach issues faded a bit. However, the pain in my back and neck continued to worsen.
In 2003 I started having problems with my wrists. They said it was carpal tunnel. Later tests showed multiple cysts in my right wrist, making it very difficult to perform every-day tasks. My doctor prescribed a few different anti-inflammatory medications, but it didn't seem to make much of a difference for me, so I stopped taking them.
I woke up one morning and couldn't move.
I was in so much pain, head to toe, that my whole body was locked in one position. For 45 minutes, I was paralyzed. At this point, I was in a single dorm room by myself, on a raised bed. I couldn't reach my phone so I lay there for a whole 45 minutes until I could manage to move my arm enough to grab it. As I dialed my Mom's number, I tried to stand up, and that's when my heart rate skyrocketed, and the room began to spin. As I tried to explain what was happening without sounding scared, I noticed that my abdomen felt funny. While on the phone, I slowly traveled the mirror, and lifted my shirt to check out what was going on.
I tried not to have a verbal outburst after seeing what I saw. My ribcage on the left side was pushed out about an inch higher than the right side. Turns out my spleen couldn't take it anymore, and it blew up like a balloon. At the time, I really had no clue what a spleen was, or where it was even located, until it popped up and said, "Hello, I'm your spleen, and I'm really pissed off!" You'd think that'd freak me out enough to send me running straight home, but I actually stayed at school like that until the end of the week.
I believe it was three or four days, and things were continuing to get worse, and I could barely stand up. I didn't tell anyone, but I had missed every class scheduled that week. I finally called my Dad, and he rushed over to take me home. I haven't been back since. Upon coming home, I took a trip to the emergency room, where they were absolutely no help, yet again. They told me I probably had a nasty virus and that it had attacked every inch of my body, settling in my spleen. After one week of lying in my parents' bed, unable to walk or barely get to the bathroom, my Mom got me back to the office of the alternative practitioner I'd previously seen. He was rather shocked at the condition of my body, and knew exactly what to test for. This is when I got my first positive blood test. I was diagnosed with Late Stage Lyme Disease.
Chapter Five: An Uphill Battle
I celebrated at first. I thought, "Finally, I know what it is. I can treat it, get better, and move on with my life." Unfortunately, this has been far from the case. We initially tried an antibiotic protocol, but I only lasted ten days on it. I came to find out that treatment for Lyme is much like treatment for cancer. Your entire body becomes toxic. Because of this, I ended up in the ER, with frightening blood pressure and heart rate issues. That's when I began to have spells where I'd start to black out, and get stuck in between that phase between consciousness and unconsciousness.
On the tenth day, after lying awake for an entire night having seizure-like episodes, and after having had to be practically carried to the car after a doctor's appointment, I called it quits. Since then, I've tried a multitude of alternative treatments, some of which have sent me straight to the hospital, and others that haven't had much of an effect. Things began to snowball again one year after diagnosis, as my immune system began to become increasingly suppressed.
In May of 2009 I contracted an 18-day stomach flu. Shortly thereafter, I contracted what the doctors think was either viral meningitis or the swine flu, and my immune system was so confused as to what to do that instead of fighting the virus, it had an allergic reaction to it. With a fever of 103.5, I went into anaphylaxis. My throat and lungs began to close up, I broke out into a rash that covered my entire body from head to toe, and my lips and tongue swelled and blistered. We were in the emergency room every day for four days straight, because it just kept getting worse. All they could do was tell me to keep an epipen with me at all times, and if I stopped breathing to call 911.
Chapter Six: And The Surgeon Said "Oops"
After that, we decided that it may be time to try antibiotics again. I gave a few a shot, and endured hell for one whole month, only to develop autonomic seizures, dysautonomia, and chemical sensitivity. After finishing the bottles, I had such bad dysautonomia that I could barely stand up again, and my chemical sensitivity was so bad that I could no longer leave the house. We needed to take some sort of action, and my doctor was really at a loss about what to do. He decided to see what would happen if he just slammed my body with IV drugs, to try to knock out massive loads of infection.
He warned me that I'd become alarmingly sicker, but he promised that I'd come out on the other side. So the doctor set me up to have a portacath surgically placed in my arm (usually they're in the chest, but I have no fat there, just ribs!), which would run a catheter from my arm to right outside my heart, so we could infuse the antibiotics. Because of the dysautonomia and MCS that I developed, surgery was going to be quite a tricky task. I opted to be awake during the surgery, and I opted out of the morphine. This meant that I only had local anesthesia and a small dose of Ativan to keep me calm while they cut me open and threaded a tube to my heart.
This is something that I probably won't be signing up for twice. The surgery seemed to go fine, until the surgeon left the room and it was time to get me off of the operating table and onto a bed to be transfered to recovery. The minute they tried to move me, all hell broke loose. My heart started beating irregularly and my heart rate shot up to 145, and any time they tried to sit me up I'd have pains and unusual sensations surge through my chest. They sort of scooted me onto the bed anyway though, and transfered me to recovery.
I lay there for two hours, while nothing improved. They tried to tell me that it was "probably normal," but I insisted that though I feel like crap on a daily basis, it's usually not THIS bad. They decided to xray me just in case then, and upon viewing the xray, the surgeon said "Oh my God, how'd that happen?" There's one word that you never want to hear while in surgery. It's "Oops." There are also three words you probably don't want to hear either: "Oh My God."
It turned out that instead of the surgeon threading the catheter TO my heart so it could sit comfortably outside of it, he accidentally lodged it deep inside of my heart, where it certainly was not meant to be. So, I had emergency surgery (awake) to have the port removed, and at that point, I vowed to never have elective surgery again. I now have scars on my arm to remind me why.
Chapter Seven: Just The Beginning
That brings me to where I am today. I'm treating with a new practitioner, who is using a combination of alternative and conventional therapies to get me well. It's going to be a long, trying road, but I know he can get me there. I still can't leave my house yet (aside from a trip to the doctor), but this wonderful practitioner has gotten me to the point where it's at least comfortable to sit in a chair again. I no longer feel like I'm dying. I know this doesn't sound like a lot, but for me, this is huge. I have the utmost faith that I can get through this. It's just going to take a whole lot of strength, patience, and optimism. This is truly a humbling experience.
At times it's hard to see the light at the end of the tunnel, and to focus on what's important, but at the end of the day I still go to sleep and thank God for every day that he's given me, and for every breath that I take, even if it's a labored one.
The biggest lesson I've learned is that it's really the little things in life that are the most important, and that if you focus on those things, you can find the positive aspects of your life no matter what the circumstances are. I may not be able to leave my house, I may have to eat the same liquidy foods everyday, and I may be stuck lying on the couch, I may have a list of 57 symptoms, but I'm still optimistic. And one day, when I'm back out in the world, truly living again, nothing is going to be able to bring me down.
So, on that note, I think I'll end. Please forgive me for how long this post is, and thank you so much for bearing with me through it. But truth be told, it's really just a snippet of what I've been through. If I just reach one person, or educate one person, or make just one person smile, then my mission is accomplished.
Candice Mitchell, California
Yesterday afternoon, as I stood in front of the kitchen counter in my mismatched pajamas, pureeing my daily liquid lunch of black beans and brown rice while popping a handful of pills, I paused for a moment. I thought to myself, "How the heck did I get here?" It's a very good question that I'm sure many Lyme patients ask themselves from time to time. Late stage Lyme Disease has a funny way of turning your life upside down in such a way that it becomes barely recognizable. I'd even go as far to say that for some of us, it wreaks such havoc on our bodies that we tend to look in the mirror and wonder, "Who is that?"
You'd think that the life of a chronically ill person would be dull and monotonous, and while sometimes it is, we're also on a journey like no other, and we tend to experience things that some people never experience in their entire lifetime. If you're interested in hearing about just a portion of it, please bear with me while I reveal what it's like to be a late stage Lyme Disease patient, and how it is I actually got where I am today.
Chapter One: The Subtle Beginning
I didn't know it yet, but for me, my journey with Lyme Disease began in the 6th grade. People joked that I should probably consider becoming the next "Bubble Girl," because I started catching just about any infection that blew my way. It actually became rather disturbing, because I began to pick up some off-the-wall illnesses that your average American teen doesn't usually get. I can't tell you how many times I'd been asked "Have you traveled out of the country lately?" When I'd reply over and over again with, "No, I haven't," they'd begin to ask me, "Are you sure?" I almost felt like laughing. "Oh yea, Doc, I totally forgot, I travelled to Japan for some fresh Sushi last Thursday night." Then the digestive issues began, and it was all downhill from there.
I'll spare you the gritty details, but basically, my GI system essentially shut down. I went about once a month. Enough said! It began to get harder and harder to eat, which was both confusing and embarrassing as a pre-teen girl. I'd go to the doctor and get xrayed, and the doctor would say "Wow...I don't usually see this, and if I do, it's in very elderly patients. There's no room left for food in there!" But he didn't do anything about it, until it was too late.
By high school, all sorts of rumors had begun to fly around about me. My weight fluctuated based on how my digestive system was functioning, as did my appetite. Often times it was hard to get through lunch, and of course, gossipy teenage girls didn't let that go unnoticed. I was too humiliated to say anything though. I mean, a teenage girl really doesn't want to stand up on the bleachers and announce that her intestines are broken.
Chapter Two: Doctors Don't Always Know Best
I'm not quite sure what happened when I turned 16, but I have a sneaky suspicion that it involved a second tick bite (lord only knows when I got the first one). After returning from camp in the Santa Cruz mountains, I came down with "flu-like" symptoms and the digestive symptoms reached their peak. Four days later, we went to Hawaii, where things continued to snowball. I remember thinking that my ear drums were going to implode as our plane landed, and I distinctly recall lying in a crumpled ball on the hotel room floor that night, clutching my stomach. It felt like someone had pulled the plug on my internal bathtub of energy, and it was slowly draining out.
Upon arriving home, we went back to the doctor. This is when I became a human guinea pig. They threw just about every digestive related drug (that you now happen to see on those lawsuit commercials) at me. They told me I needed to get more sleep. I needed to "wash my hands" and "drink plenty of water." I wish life were that easy. They made me think that it was normal to feel like I was walking around with lead in my pockets and bricks in my shoes.
After conventional medicine had continued to fail us, we decided it was time to seek out some help from an alternative practitioner. He was wonderful, but I was an incredibly complicated case. He helped us to uncover that I had a boatload of food allergies. As we began eliminating them, my digestive system began to change a little, but scary things began to take place.
My diet became smaller and smaller as my body began rejecting whole categories of foods. In hindsight, we weren't educated enough on food allergies, so we weren't sure what to keep and what to cut out. We had no idea what "gluten free" really meant, and I made epic mistakes like thinking that "rye" bread was okay because none of the ingredients said "wheat." Perfect recipe for intestinal malabsorption. Despite eating mass proportions of what I thought was "safe," the weight began melting off of me faster than butter in a hot skillet.
Chapter Three: The Hospital Stay From Hell
Before I knew it, I was 17 years old, 5'7, 88 pounds, and I was lying in a hospital bed. I barely remember my 10-day stay in the hospital. I honestly think I was comatose most of the time. I wasn't aware enough to be scared. My intestines had gone into malabsorption, so no matter how much nutrition they pumped into me, my weight remained alarmingly low. My blood pressure was so low that the nurses would come in, frantic, in the middle of the night, flip on the lights, and discuss what to do with me. My heart rate tanked as well, and at some point during the stay--I don't remember it--I went into atrial fibrillation. I went into a-fib at 17 years old.
Since they didn't know what was going on and didn't have a clue how to fix it, they blamed it all on the weight loss. The only thing they couldn't tie in to the weight loss was the fact that my liver enzymes had shot through the roof (up in the 300s!), and even though my charts note that they were concerned my liver would start to give up on me, they chose not to bring it up. Despite my blood pressure being 70/30 (half of what it should be) my heart beating at 40 bpm, and my liver under dire stress, they still put me through the wringer with gastrointestinal tests. All to tell me that "your digestive system isn't working." Thanks, Sherlock.
Food moved through my system six times slower than an average person's; that means when I sit down to breakfast every morning, yesterday's breakfast has just left my stomach, and is beginning to digest. Bet you can guess what they did about it though. Nothing. So, I took matters into my own hands. I started to educate myself about diet. I learned what it really meant to be gluten free, dairy free, and essentially allergen free. Unfortunately, I also had to cut out fats and animal protein, because my broken bowels decided they just couldn't do it. I'm happy to report though, that I did bring my weight up to about 100 pounds, all by myself. That's still about 30 pounds underweight, but it was better than 88!
Chapter Four: College, or Something Like It
So, despite having no energy and a really whacked out diet, I had the bright idea to leave home and go off to college. Everyone said that there wasn't anything serious wrong with me, so in theory I'd be okay, right? Wrong. It was quite the experience. Because of the issues that were beginning to plague my body, I spent literally all of my time sleeping, studying, and cooking. It was horrible.
I met some of the most amazing people I'd ever met in my entire life, but I never got a real chance to be around them. I was far from the typical "college student." My life was a living nightmare that I was trying desperately to grin and bear. I had to cook every two hours in the community kitchen, just to keep on weight. I had to fit going to class in between my eating schedule, and on top of it, had to find time to actually do the work. I found myself trying not to cry as I stood at the sink, rubber gloves on my hands, rinsing dishes as I tried to both eat and clean up dinner at the same time. I tried to focus on the book I had lying open next to the sink, but all I could focus on was the sound of everyone laughing down the hall, as they ate pizza and played card games together.
I believe that both life and Lyme are all about lessons. Boy did I learn some in college. I now understand that my priorities were royally messed up. As I focused on maintaining A's in all my classes, I started getting F's in health. My bladder started to go on me, so I started to have to sit on the end seat in the giant lecture halls, or else I couldn't stay. I couldn't make it across the aisle in time. This meant that I also had to find time to cook, eat, study, get to class 20 minutes EARLY, do the assigned work, and sleep.
I was often so exhausted that my whole body burned, from head to toe. I was so tired it was often hard to breathe. My kidneys would send shooting pains through my mid-back when I'd least expect it. I had chest pains as I rushed through each daily task, and often woke up in the middle of the night shaking, in a cold sweat. My body finally said "enough."
I woke up one morning, and couldn't move...
Part 2 Friday.
Doctor Number Seven in the series rolled his vinyl-covered chrome stool so his back rested against the opposite wall of the small exam room. He sighed, slapped his clipboard (they used clipboards in those days) onto his lap and said, “Tell me about your life.”
My life? He’d only heard a smattering of the symptoms that had crept over me—a new one each month for the past year. Heart palpitations that took my breath away. Muscle aches that medicines and massage couldn’t touch. Incessant joint pain. Muscle spasms that flitted from one body part to another with lightning speed. A headache that lasted five months without letting up for even five minutes. Brown-outs (like a black-out, but not fully developed). Vision problems. Low-grade fever. Facial numbness that migrated to my chest and arms and eventually to the soles of my feet.
“My life?”
“Yes. How’s life?”
Did he, like others, assume my wide array of seemingly unrelated symptoms meant I put the hypo- in hypochondriac? Did he assume my real problem was depression? Or a plea for attention? Or a reaction to stress?
I grew up in Northern California. I’m not talking about San Francisco. I was four hours north of there in the mountains.
Like any kid who grew up in the woods, I was always outside, I hardly wore shoes, and I wasn’t afraid of getting dirty. Naturally I wasn’t afraid of bugs either. I remember pulling a tick out from behind my ear. I can still see its little legs kicking in protest. With a look of disgust, I threw him on the ground. “Yuck,” was about the only thought I had about the experience. I was maybe 10. I don’t think I got Lyme from that one, he was too big.
I also remember getting spider bites. I never saw the spiders but I would occasionally wake up with a big, round, red ring of a rash around what appeared to be an unaffected patch of skin. Sound familiar? Yeah, well needless to say I am no longer so sure about my self-diagnosis of spider bite.
It is hard to say when I was actually infected with Lyme. I didn’t really start suffering from any symptoms until I was 21. In 1998 it started slowly with my stomach. Honestly it was pretty miserable at times but I just ignored it.
--------------------------------------------------------------------------------
In 2000 I moved with my now husband to New Zealand. When we got off the plane I was in bad shape. It felt like someone had stuck a big wooden spoon into me and proceeded to stir my innards. “Is this what jet lag was?” I wondered.
It quickly got worse. Besides the unbearable pain in my stomach I started having major breathing problems. I just felt like I wasn’t getting enough air. I also had trouble swallowing. The doctor gave me an inhaler for asthma. Ah, it didn’t help.
Life continued on with me in a constant state of panic. What was wrong with me? My boyfriend’s advice--“Harden up Ash.” How very Australian of him.
On a trip to Germany in 2001 my boyfriend declared that the whole city of Munchen stank. Everywhere we went there was a foul smell. I was too embarrassed to tell him it wasn’t the city. Thankful though, that he didn’t realize it was me.
In 2002 we departed another plane, back in the USA. I was bad. Everything I ate or drank seemed to have an adverse effect on me. Mentally I was struggling too. At this point I thought the doctors were right. I was nuts, totally off my rocker. Lock me up and throw away the key!
My family blamed my fiance. My fiance blamed American food. I was pretty sure I was going to die soon. The latest doctor gave me drugs for IBS and acid reflux. Whatever.
I went to the doctors 13 times between January and March of 2003. Lots of drugs and no real answers.
At our engagement party in April, the guests must have thought I was on illegal drugs. I couldn’t even answer simple questions. I remember my mom encouraging me, as if I were a five-year-old, to answer for myself.
Another plane back to OZ and NZ. I was sick of it all now, and determined to figure this out for myself.
My self diagnosis--Candida.
I found a naturopath to help. She confirmed the candida and tested for parasites. I had a lot. She also did a food allergy test. I took all this information and put myself on a diet protocol. No gluten, no dairy, no sugar, no alcohol, and no meat other than seafood. My wonderful husband conformed as well.
At this point I had added depression and fibromyalgia-type pains in my legs to my symptoms. Enough was enough. My new protocol also included exercise. I started with walking 20 minutes a day.
Six months later I was still on the diet, running three miles four times a week and actually feeling healthy.
I felt pretty good in 2004 and 2005. I had ups and downs for sure but they were manageable. In 2006 we went to El Salvador for two months. Maybe I got a new parasite or maybe it was that my diet protocol had long since flown out the window. Maybe it was the plane rides or too much time living at over 8,000 feet and working at closer to 10,000 feet. Maybe I got re-infected; I still wasn’t afraid of sleeping in the dirt. Who knows, but my health started to slide.
I decided to just accept my fate. I told my doctor that I was cursed with a sensitive digestive system and I was learning to live with it.
In the winter of 2008 the depression returned with a vengeance. I couldn’t cope. I was struggling to make it through every day. I’m really good at putting up a front though. No one had any idea what I was going through. I wasn’t even sure what my problem was.
I nearly lost my husband because with no where else to find blame, I laid the finger on him. For some reason he stubbornly stood by me. I was lost.
That summer I gave in. Maybe I was nuts like the doctors had been saying for the past 10 years. I went to see a shrink. Well, she didn’t think I was crazy. She thought I was sick. How’s that for a Catch-22!
In the fall I reluctantly went to see another doctor. It was getting too serious to ignore. She tested me for everything under the sun. I was surprised there was any blood left in me after all that! There appeared to be a handful of minor things wrong with me, including Lyme disease.
I didn’t like her. The medications and supplements she put me on made me feel like I was going to die and I kept breaking out in hives. Nothing was explained to me. I stopped seeing her after two months.
It was four months later when I went to se a chiropractor that I learned about Lyme disease.
He lent me his copy of Under Our Skin. My husband and I watched it in horror. Was that what we had to look forward to? Did I really have Lyme or was this just the latest in the long list of the so called “diagnoses” I had received?
The LLMD told us about Lyme. He asked questions about my past and my symptoms. Magically all the broken pieces of my life seemed to fit back together.
I had Lyme alright, and co-infections and viruses.
Would I change it if I could? No. Like many others I have discovered so much about myself that I would have otherwise never known. I have become a better person because of this disease.
Do I want to be healthy? Yes.
Emotionally I am in a much better place now than I have been in years. Physically I struggle, but there is a light at the end of the tunnel.
Ashley van Tol, California
