"What is Lyme Disease?"
I've come to know that the MOST common question that any Lymie receives is the aforementioned question above. I've found myself answering this question dozens of times, and I am quickly reminded how tragic the Lyme epidemic is due to the lack of information and education that the average person has on the topic. There is nothing "rare" about Lyme disease, as there are 27,000 new cases of Lyme disease in the United States every MONTH! And yet those who do not suffer from it often seem to turn a blind eye to it because the medical system has caused society to believe that it "doesn't exist." As a Lyme survivor myself, I can attest that it does exist, and it is one of the most challenging adversities that I believe a human being can suffer from.
So what is Lyme disease? Lyme disease is a bacterial infection that can spread to virtually any organ system in the body due to its spiral shape that easily can drill into any tissue, cell, muscle, or organ. Lyme disease and its co-infections can attack its victim and leave it completely paralyzed or in severe and unbearable pain for years, and Lyme disease is a constant battle to fight and the chances of beating it are slim to none. And yet there are thousands who fight every day, despite the harsh reality that is Lyme disease. Lyme disease is science, and yet it is so much more.
Lyme disease is pain. More pain than I ever believed a single human being could bear on their own until I was forced to bear it myself and watch many of my loved ones bear it as well. Lyme disease is loneliness, isolation, and insufferable boredom as you spend a lot of the time waiting for a treatment to work (or not work), waiting to feel better, waiting on doctors and support that never comes, and waiting to be well enough to be able to live life like anyone else. Lyme disease is blowing all your money on treatment that you don't even know will work, trying anything and everything to feel better, and crying in prayer during many dark nights because it's impossible to endure on your own. Lyme disease is hoping. Because sometimes when you've been stripped of everything, hope is the only thing you have left. And let's not forget that Lyme disease is resilience, patience, perseverance, and at times its just pure grit. Lyme leaks into everything, and it changed my life. And it is currently changing the lives of thousands and millions of others who are fighting the good fight every day of their lives.
Why is it important that we seek to crush Lyme? Because with so many suffering, we have to fight to crush the disease before it crushes us. And if we all ban together on this issue, we may find that doctors, friends, mothers, fathers, brothers, and sisters will start to listen to us. And once that happens we can change the world. We can offer more help and hope for the hands that hang down by the crushing the grip of Lyme.
So the next time you find yourself talking to a fellow Lymie, take time to LISTEN and offer love and compassion. That small act can truly be one big step into crushing Lyme disease and the stigma that comes with it. Lyme disease may try to crush us, but it never will because we do not intend to quit anytime soon.
This post was inspired by Splash of Lyme's "Crushing Lyme" campaign. You can follow this amazing Lyme warrior by following @splashoflyme on Instagram and checking out her amazing blog here. Thanks so much to Courtney for starting this and for sending love to all the Lymies this Lyme Disease Awareness month!
I'm Claire Dalton, I'm 22 years old, and I suffer from endometriosis, anxiety disorder, depression, arthritis, joint pain, muscle pain, chronic fatigue, and a whole host of other symptoms that can be wrapped up in a pretty little package that is referred to as CHRONIC LYME DISEASE. I'm bold, strong-willed, and driven, and when my quality of life was ripped out from underneath me, I desperately needed all of those qualities to keep myself alive. My story is a story of blood, sweat, tears, and a family burdened with Lyme disease who chose not to quit and still chooses to stay and fight every day. Lyme is brutal, but not brutal enough to kill us.
My story begins when I was a teenager my junior year of high school. I was sixteen when my mother became gravely ill and bedridden in a more permanent manner. I don't ever remember my mom being completely healthy. She frequently experienced flares of illness of every kind throughout each winter season, and in the summer it would improve. Come to think of it, this was my pattern as well, but we never gave it a second thought because we were so frequently met with comments like, "it's normal for kids to be sick all the time" or, "all kids are frequently sick during flu season." That was the belief in my culture, my home, and my family, and we didn't realize how wrong that statement was until one day my mom went down and didn't come back up. One day everything simply plummeted... and this time waiting it out didn't make it better.
I went to school like a normal teenager. I looked like a normal teenager. I worked hard and studied hard like a normal teenager. But my home life was far from normal and I was often filled with overwhelm and fear because I never knew whether or not my mother would be alive when I came home from school that day. It almost seemed at times like we were simply waiting for death to pass over our house because death would mean the release of pain for my sweet mother. Our home was often filled with moans, groans, screams, tremors, and seizures due to how much pain she constantly suffered from. I desperately wanted my mom to live, but not like that. Not while death seemed so close on such a constant basis. Hospital runs, medications, being forced out of our house, trial and error of every diet under the sun! It was a living hell in my house, and I prayed so often for the feeling of the floor being ripped out from underneath me to cease.
Medications made things worse. Doctors assumed my mother was psychologically unwell. Friends and neighbors stayed away in fear of "catching it" or simply not knowing what to do. My mother went undiagnosed and misdiagnosed for a seemingly endless period of time. We craved a diagnosis. We craved answers. We craved an ending to the constant suffering.
In the year 2014, we finally received a diagnosis. Chronic Lyme disease. We received a diagnosis only to find that there is no proven cure and no doctors in our state that knew very much about Lyme disease. We searched elsewhere for answers and protocols, and the long and arduous journey of healing for my mom began.
Meanwhile, I worked hard to graduate from high school. I recall major brain fog, severe anxiety, extremely painful menstrual cycles, and a constant state of stress in high school. It never occurred to me that I could be diagnosed with the same disease I listened to my mother scream from night after night, but my first semester as a freshman in college was my trigger, and I went down fast.
I remember existing in a constant state of panic in college. Nothing ever felt right and my heart and nerves often felt tightly clenched as I spent many dark nights experiencing panic attacks all by myself. My heels and feet would hurt and ache every time I walked across campus to the point where I tried buying gel inserts for my shoes that never worked anyway. I couldn't remember hardly any word that came out of my professor's or tutor's mouths, and I had to come home and sleep for three hours just to make it through each day. I suffered from severe excoriation disorder and would claw at my own arms until they bled and would leave massive scarring. I had major joint and muscle pain, and my menstrual cycles were nearly unbearable. My hair kept seeming to fall out in massive amounts, I'd break out in skin lesions, and I was losing weight faster than I could count.
"Your test results came back positive." That's not a sentence any college student wants to hear, but I heard it and my heart sank. Doctors appointments, tests, and 30 vials of blood later, I knew I had Lyme disease. I also knew that if I didn't change my lifestyle and get on treatment soon, I'd end up being the one in screams.
I started my first treatment while I was still going to college. At the time my mom had been on a cancer protocol for about a year that was known for being very beneficial to Lyme patients. So far that protocol had healed her to the point where the screams had stopped and there were some days that she could get out of bed. We decided at the time that the best route was for me to go on the same treatment. This began an entirely new way of living.
I remember throwing everything out in my pantry and changing my entire diet. No more sugar, dairy, meat, gluten, citrus fruit, tomatoes, or spices of any kind for a while. I didn't know how to cook and I submitted to eating bland food for quite a while. I remember sleeping with oxygen tubes to prep for treatment the next day. I recall waking up early, taking all my supplements and my treatment, and hoping that I wouldn't herx too hard so I could make it to all of my classes that day. At the end of every day, my treatment required me to record all of my vitals and rate each symptom from one to ten. I so often marked high numbers on each symptom, my heart rate was always in the hundreds, and I always seemed to be bone cold. My grades dropped dramatically, and everything felt awkward and uncomfortable. I had good days and bad days, but the bad days usually left the good days as recovery days. The problem with Lyme is that it usually gets worse before it gets better. As was the case with me.
I left college before the semester was over. I felt like a failure, but I fell to the floor and cried tears of joy when I finally reached home that day. It felt so good to be home. It felt so good to know that at least now I could be sick in my own house. I looked in the mirror that night and wondered who the girl was that was staring back at me. I pleaded to God for help. I knew I had a long road ahead of me. I just don't think I knew what that entailed.
The herxing was brutal at first. I remember my first major herxheimer reaction was so excruciating that I lost my ability to get up and walk to the bathroom by myself. I recall my head throbbing every time I opened my eyes, and my entire body hurt so bad that I couldn't lay on one side of my body for too long because the weight of my own body was too much. I remember everything spinning, and passing out in front of my bedroom door after I attempted to walk by myself. What I didn't realize then was that overcoming that herx was the first of many baby steps to getting my quality of life back.
After a year of that treatment, I changed my diet again. I gradually reintroduced spices, dairy, gluten, and meat back into my diet, taking care that everything was organic, whole, and clean. I had no desire to eat refined sugar again, and I still don't. I found myself gaining some of my life back as symptoms began to peal off little by little. The severe pain that came with endometriosis was torture every month, but the improvement of symptoms the other times of the month gave me hope for healing. I continued trying different protocols. I tried high dose vitamin C IVs, magnesium injections, large amounts of supplementation, and light exercise as I could. Some things started to clear. Others didn't. Lyme disease always seemed to leave me frustrated and confused because things would come and go and extreme pain left me scarred with memories and fear of if or when it would come back.
The Sauna Detox Protocol is the treatment that CHANGED MY LIFE. After a vigorous two months of sweating it out in a sauna, I began to feel like I had my life back. My skin cleared, I began to gain the weight that I had lost, my hair started growing back, my pain lessened, and the herxheimer reactions decreased. I gained my energy back and my panic attacks eased. My brain fog, fatigue, and cognitive dysfunction lessened, and even my endometrial pain improved! I never believed that I would get my life back, but to a point, I did. I don't have non-stop excruciating pain anymore, and I can't begin to express how thankful I am for the healing that I have been able to experience in the past two years.
Now, I have the unique opportunity to look back and contemplate everything I've been through, and I often take time every day to allow myself to feel the emotional pain that comes from experiencing such large amounts of physical pain. I still struggle with severe anxiety, lower abdominal pain from Endo, and excoriation disorder and I'm still fighting to overcome. I now treat my Lyme with AmpCoil, and I've found that if I don't regularly practice treatment and self-care my symptoms will reappear. What helps me function is consistent 8 hours of sleep every night, drinking half my body weight in oz. of water every day, and only consuming organic and whole foods.
PTSD is a real thing that Lyme patients suffer from, and I often find myself having flashbacks of severe pain flares that leave me paralyzed for a time. With that said, I often find myself holding onto God's love in those moments, and that gives me a reason to keep going and keep striving for a cure. I am not "cured." I do not live an easy and symptom-free life at all times... but there have been so many blessings and miraculous amounts of healing that have taken place in the past couple of years, to which I am incredibly thankful for.
To anyone suffering from a chronic illness... I've learned that even in the darkest nights, there is HOPE FOR HEALING. Some of us in life are called to pass through the darkest nights and the scariest of circumstances, but those experiences are for our refinement and for our good. The road ahead may be full of darkness, but there's always a light. I've now gained the wisdom to know that it takes more than one protocol to find healing. It usually takes many tools in your toolbox to survive the depths of Lyme disease. I've also gained such a love for the concept of suffering and why some are called to pass through such deep adversities. I'm learning every day how to accept my illness and love and appreciate the good moments. I'm learning to love my scars, for they are my battle wounds that tell the story of how I overcame something horrendous. I'm learning how to be patient and flexible with God's timing instead of my own. And I've gained a passion for loving and helping people who suffer through dark misfortune and come out stronger in the end.
Chronic illness warriors are INCREDIBLE people! If you want to learn about resilience, dedication, desperation, hard work, and perseverance, love somebody who is sick. Because when you get sick for the long haul, something inside you begins to bloom that is the only thing that will keep you going during your most desperate nights. And then one day you'll wake up and realize that the bloom inside you grew into a garden of flowers that you didn't know you were growing.
Some days are good. Some days are bad. Some days are bland and some days are more than I feel like I can handle. Progress is not a constant upward motion, but a roller coaster that makes you want to scream at times and laugh at others. It's all about learning how to enjoy the ride. This is Lyme disease. This is invisible illness. This is my Lyme life.
You can find more information on the Sauna Detox Protocol HERE
Things to Know about Chronic Lyme
Chronic Lyme is tricky. It's such an inner battle that half of my symptoms I have I thought were totally normal for the longest time. I suppose that eventually you just numb yourself to what you're feeling and pretend it's normal. It's easier to do that than it is to face it, and endure to then end. With that said, there are so many people that are uneducated and naive as to how bad this illness can get. This is why I feel it is extremely important to educate ourselves and be aware of the horror that can take place simply because of a bacteria born infection.
Chronic Lyme disease is a bacteria born infection that primarily comes from the bite of what's referred to as a deer tick. With that said it can also be transmitted through the bite of a spider, mosquito, or any bug that just happens to carry the infection. Studies have also shown that pregnant women who are infected can pass Lyme disease down to their unborn children. That would be how I obtained it. My mother got bit by a tick when she was only nine, and the scary thing about Lyme disease is that sometimes symptoms don't begin to show until days, weeks, months, or even years later. (Which just happened to be my mom's case.)
Lyme is directly caused by a bacteria referred to as a spirochete- a spiral shaped bacteria that is capable of drilling into literally any part of the body. This is what makes Lyme so scary. Lyme can affect anything in your body and lead to problems in your brain, nervous system, muscles, joints, heart, etc. The symptoms are never ending. And depending on the severity of it all, it can dull your quality of life to almost nothing.
Here's the thing about Lyme that most people don't get. Something that I hope with all my heart that I can get the point across. Chronic Lyme IS REAL. It's as real as chicken pox, and as tragic as any other disease that people are actually aware of. It's painful, it's exhausting, and it's discouraging. Yeah, we look fine, but that's beside the point. When you have a chronic illness, you learn to numb yourself to the pain. You numb yourself to the exhaustion. You numb yourself to what's going on in your body and you keep moving forward because if you don't than your quality of life is reduced to almost no life at all. It's not just "all in our head." It's not all psychosomatic. It's not something we make up just to get attention. It's REAL. I've experienced it, and I've seen first hand how bad it can get. I can only hope that people understand that. And with that said, I can only hope that the people who fight this know that they are not alone.
For more information on Chronic Lyme you can visit: https://www.lymedisease.org/