Callie and Her Journey with Lyme

Meet and read about Callie and Her Journey with Lyme. I met her parents before she was ever a speck in their eyes. Our families were neighbors. Her mom, Lesley, and I were pregnant at the same time with the girls 🙂 It was lovely! Callie was born a couple of weeks before my daughter, V. We raised our big girls together. It has been a blessing to know this family for over 20 years. Please read the story that spurred my desire to have this Lyme Disease Series. 

I’m so proud of this young lady; her testimony is one that only God could orchestrate! If you have ANY questions, please feel free to email me at barefootfaithjourney@gmail.com, and I will personally put you in touch with Lesley, and she can share the details of how God chose an unconventional method to heal this sweet beauty of a crapola disease!

There’s No Suffering Without Glory

Callie Emerson

I’m sure if you’ve been keeping up with the Lyme series on Brandi’s blog up to this point, you know quite a bit of my story and a significant amount of information about Chronic Lyme Disease. So while my blog post is based on Lyme awareness and my battle with the disease, I’m hoping that the more incredible message will come across is that no suffering occurs in vain when it is for the glory of God.

Before I delve into all of the medical mess, I want to give a little background information to those reading this. I grew up in a Christian home, and at age seven, I knew that the Father dearly loved me, that I loved Him in return, and that I desperately wanted Jesus to rid me of my sin debt so I could spend my eternity with Him. I want to be clear that I came to know Jesus as my Savior long before I had any medical issues.

My journey with Chronic Lyme Disease

It began in sixth grade when I started to faint at completely random times. I eventually reached the point where I was fainting roughly ten times a day. My symptoms only continued to increase from there. At age 13, my knee pain was so severe that I received steroid shots in both knees and yes, shots in the knee are as awful as they sound.

As I proceeded into eighth grade, my back, shoulder, and neck pain began to develop. By the end of my eighth-grade year, my pain was so severe that I was physically incapable of opening my bottom locker. I relied on others to open my locker for me.

This following symptom, for me, is the hardest one to reflect upon. I began to experience what I now know to be “Lyme rage.” During this time, I was so unkind to my family and even to a couple of close friends. There is no exaggeration when I say that one of my family members could look at me, and I would begin to feel angry. My life was lived in a state of unjustified, uncontrollable anger.

Worst Part

The worst part is that I could feel myself getting angry, so I would try to assess why I was so mad, and even after I couldn’t find a single reason, I found myself unable to stop the anger from welling up inside of me. My family is a fantastic group of people for not only dealing with me during this time but continually showing me grace and love.

At this point, I was angry, sore, and dizzy. I continued, and my symptoms grew worse, and I continued to be given misdiagnoses and pills. Luckily I have an awesome mom who went above and beyond for four years, ignoring ten misinformed doctors to find the only Chronic Lyme Disease expert in the area. We saw this doctor sometime around my sophomore year of high school. I’m not sure if anyone picked up on this idea from my mom’s post, but

GOD’S TIMING IS PERFECT

Right before we discovered this doctor, I went to church camp. While I know, it’s super cheesy, going to camp allowed me a much-needed break from distractions and to learn what it meant to be a Christian. You probably think that you haven’t heard much about my walk with Christ until now, and you’re right. That’s because, at age seven, most of us aren’t dwelling in sin that requires us to make an extreme life change. I made no changes as the years passed, and my spiritual growth was stagnant.

Fortunately, attending camp allowed the Spirit to convict me while I wasn’t distracted by soccer, school, or being sick. I became aware that I behaved well and made good choices because I have strict parents, and that’s how they raised me to act, not because I was trying to live a life worthy of the gospel (Philippians 1:27).

My eyes were opened to what being a Christian entailed, and believing that He had a plan for my illness. Until then, when I asked, I would half-heartedly respond that God had a plan for it. After learning what it meant to follow and pursue Christ, I could finally fully grasp the concept that I was enduring this trial for a purpose.

God had a Plan for Me.

God blessed me by allowing me to understand that He had a plan for this illness right before I entered the most challenging time in my life. I can never communicate how gracious He is for doing so, enabling me to rely on Him wholly during this time. My physical difficulties began when I started taking some powerful oral antibiotics to fight off the Lyme. I reached the point where I was taking roughly 15 pills a day.

During Lyme treatment with antibiotics, your body can respond in weird ways, and often you have to go through phases of feeling worse before you can feel any better. I would wake up for school in the morning and be unable to sit up. I’m not exaggerating when I say I couldn’t move. There would be days that I would make it to school, but I would be sitting at my desk, and I would be in so much pain that I would be on the verge of tears or would be unable to hold my head up without using my hands because of how badly my neck hurt.

Because of how many pills I was taking and how potent the drugs were, I struggled to keep anything down. I threw up almost daily-which defeated the purpose of taking the medications. Because I couldn’t keep all the tablets down, my doctor decided to pursue a different route.

PICC Line Life

At this point in my life, I got two PICC lines. PICC lines are inserted into your arm and run through your vein, all the way to your heart. PICC lines allow IV medicine to be dropped directly into your heart. The PICC line is used because it can reach your entire body much faster. As much fun as this sounds, the whole process can become twice as great as my body begins responding to the medicine.

Random parts of my body would go numb, as much as one entire side of my body would lose all feeling. I would also start shaking uncontrollably. At this point, Lyme’s rage was taken over by random crying. I am completely serious when I say that I would be bawling, but telling my parents that I wasn’t sure why I was crying.

While switching to IV antibiotics prevented me from throwing up medicine, the antibiotics were still so strong that I continued to get sick regularly. During the rough times, I typically ran a fever of 103°F. The physical turmoil the antibiotics put me through left me overly weak. I had to sleep on an air mattress in our living room because it was too difficult for me to walk from my room to the bathroom. My mom even had to sleep next to me on the couch because it was unsafe for me to be left alone all night. Because of this, I missed 50 days of school from August to December of my senior year.

Patterns with My Body’s Response

During this time, we noticed a pattern in my body’s response to antibiotics. After about two weeks, I would become allergic and need to switch medicines. These allergies happened with roughly five different medications. Eventually, I ran out of possible drugs to use to treat Lyme. While contemplating our PICC line options, my PICC line got clogged.

For PICC line users, clogs, infections, and blood clots will force you to remove your line…so at the time, this clog was a big deal. We were able to go to the ER and have it unclogged. In hindsight, the clog was likely God’s kind way of telling me to take it out.

So naturally, my perception skills were not up to par, and I missed this, even after five failed medications and a clog. The night I got my PICC line unclogged, I got a blood clot. That blood clot sent me to the hospital for a week. The PICC line was removed. My mom and I had no idea what type of treatment to pursue next. We felt as if we had exhausted all of our options.

After a Lot of Prayers

God led us to a small homeopathic clinic. This clinic is about 12 hours away from our home in western Kentucky. I will not delve into the details of the treatment that I received. You can obtain that information by contacting my mom if you are interested. I will tell you that after only three days, I felt better than I had in years. Total healing continues for several years after the initial treatment. Two years later, I am still continually improving and adjusting to life as a healthy college student.

Reasonably often, well-meaning friends will ask about my experience with Lyme and say, “Oh my goodness, that’s terrible! I bet you wish you had found that homeopathic clinic sooner.” Or, “I bet you wish you could erase that from your past.” My answer is always no. I don’t answer this way because I am trying to get attention. There is no desire to appear more “religious.” I answer the way I do because I would be vastly different without this season in my life.

This Time of Suffering and Trial

This time of suffering and trial made it clear that God was directing me toward a specific profession. This profession will continue to carry out His will. How many 18-year-olds confidently say they know what job they want to pursue? I cannot stress enough how pivotal this illness has played in my life. It did this by shaping me into who I am today. More importantly, it has firmly rooted my relationship with Jesus.

I’ve thought about my walk with Christ without those six years. Every time I feel the same thing: thank goodness I was sick. God was able to use something so dark in this illness to shed light on my life. He used Lyme Disease to draw me near to Himself.

While I was awakened to the profession, I needed to pursue it to bring Him glory. My time of sickness allowed me to see how I could use this experience. This experience can be used to glorify Him and bring healing to others. All this can be done before I’ve attended graduate school. These are the reasons why I agreed to write this for Brandi’s blog.

God has used my mom and me to share healing personally. We have also been able to share the gospel with over 300 people. Countries include the US, Canada, and Norway. I want you to come away from this post with new knowledge about Chronic Lyme Disease. Hardships you encounter can be used to bring God glory. It can also reveal a purpose for your life that is far beyond what you could have ever conceived.

Welcome, My Newest Guest Blogger Lesley. Les and I have been friends for an eternity. We met moons ago in church, then moved into her neighborhood and became her neighbor. We were pregnant with our oldest girls together. Those sweet girls are now 20! A story of a mama who didn’t give up on her girl or God. I’m excited to be a platform for her and their powerful message! Maybe, just maybe, I can get Callie to write her story out, too. We shall see! Just watch what FAITH and DETERMINATION can do!

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So faith comes from hearing and hearing through the word of Christ. Romans 10:17

I remember hearing God speak to me, through my prayer time, about my daughter. I was so very guilty of half-heartedly praying for each of my children. For my children, prayers are for protection and to grow in grace. These are all the things a “good Christian Mom” begs. I did this each day for my children. Like us all, I was going through the motions. Thankfully, God is who He is and still chose that time to speak to ole ½ effort me.

For a solid month, I was able to pray for both my boys. Amazingly enough, when I would begin to pray for my daughter, Callie, God would speak over me. I know many looks for ways that God is speaking to us. Believe me; I would rather have the less direct approach. My Father knows me well, though. He intended for me to listen. As I struggled to pray daily for Callie, He would speak over me and say, “Heal her.”

Hearing His Voice Clearly

Those were His only words. They told me we, as a family, would face a season. Also, He would, in the end, heal her. Honestly, this wasn’t the first time I audibly heard His voice. I didn’t doubt those words were His. However, I did wonder how He could be so confused. Honestly, Callie was a healthy 12-year-old.

She had never been sick. Seriously, even as a small child. She played soccer to the point that I was exhausted just driving her around. There were many different teams and commitments. Nonetheless, His words were clear. So, I stood tearfully in front of my husband, Erik. I told him to prepare that God had told me Callie was sick.

Two weeks later, her first symptom began.

Callie began fainting in her first year of middle school. Seriously, as if that year isn’t awkward enough. She fainted up to ten times each day. We felt pretty confident in the initial diagnosis. A cardiologist diagnosed her at Kosair’s Children’s Hospital. He said his daughter had the same issue. That during stressful times, she would faint. He even said to expect her to faint on her wedding day. There was nothing to do but continue with life.

He claimed it was a dip in blood pressure. This was because Callie was an athlete. Her BP was already low, so it didn’t have far to drop. He’s a pediatric cardiologist, and his daughter also has this. He knows and has certainly checked this all out, right? A pediatric neurologist at Vanderbilt and a host of other doctors agreed with his diagnosis. So we went on with life with the occasional flops onto the floor.

Every season there is a new symptom of Lyme disease

Each year Callie added a new sign and became sicker. In 7th grade, she began having knee trouble. She couldn’t bend to open her locker. Thankfully, all her sweet friends did that for her. Multiple trips to her orthopedic doctor and several knee steroid shots didn’t find a solution.

She played soccer with two knee braces. Also, she fainted while on the field. We left the area with ice packs all over her legs. She was the definition of a total mess! Fortunately, fainting on the field to many just looked like the most awkward trip in the world. Anyone that knows Callie knows she is fully capable of the most uncomfortable travel in the world. So it was very believable.

Feelings of Judgment

We often felt judged by other parents for allowing her to continue to play. Still, we knew mentally we could not take that from her, and now in hindsight staying physically active was what likely saved her and kept her from becoming bedridden.

Before leaving middle school, she added extreme fatigue to the daily list of things affecting her. I would pick her up from school, and she would fall asleep in the car before we could even pull out of the parking lot. Her moods confused us because her nature is typically very kind and grace-filled. Often she would get furious over minor things and look embarrassed at herself for acting so over the top. We wrote it off as teenage girl hormones, but it was Lyme rage.

Getting Sicker

Sadly, there were more doctors, tests, and no answers as to why she continued getting sicker. All her blood work for every test came back perfect, and each doctor would say, wow, she’s too young and healthy to have so many diseases, but they offered no answers, only pills, and more pills. I remember at 14 from one doctor, and she was given medicines for pain, muscle cramps, and sleeping aids, none of which we chose to fill. We were not going down that path.

Homeopathic

I knew a more natural approach had to be our route. Still, I honestly didn’t trust natural doctors or natural medicine, and I certainly did not have much faith in my ability to decide if they were legit or crazy. Looking back now, I think my prayer was ½ hearted because I thought what I was asking for didn’t exist. I asked God to send us an MD that was also a homeopathic doctor. That couldn’t exist. They are so different in their approach that there can’t possibly be a doctor who is both. Oh, yea (Lesley) of little faith!

Two weeks after I began my prayer, a sweet friend from high school made a Facebook post about her new job. I clicked on her link to see where she’d be working, and it was in the office of an MD that was also a homeopathic doc! God, you are so good!

He is Relentless

God also began relentlessly placing the word Lyme in front of my face. I sat up many nights reading as I had for the first four years, trying to find anything we could be overlooking to help Callie. As I read, all things pointed to Lyme disease. At this point, she had three negative Lyme tests on her records. How on earth could it be Lyme? I don’t remember her being bitten. She was never sick. It couldn’t be Lyme. 

Truly the hand of God

Not only did God send via Facebook of all ways a doctor I could trust because he had a familiar to me traditional medical approach, but he also happened to be the one Lyme literate MD in our area! There was only a handful of them, but we had one nearby, and he was the very doctor I had asked God to help me find. God’s provision was beyond what I knew to ask for in prayer!

At 16, Callie was diagnosed with Chronic Lyme disease, just what God had been revealing to me and preparing us for weeks.

Two years in the desert 

Jesus often taught through examples, and the best tool is a non-example. My Mom’s heart hurts when I think about Callie’s two years of treatments (from 16-18) because now I know it is an example of how not to treat Lyme. I am not sure I could have done what she did. That tenacious spirit almost killed us when she was a preschool kid drove her through this time. I never once heard her ask, “why me?”

So Much Pain

From 16-18, we aggressively treated Callie’s Lyme disease with high doses of antibiotics. She took 14 pills daily, fought to keep them and any food she could manage to get in, and continued to do everything asked. Many days she could not get out of bed at all. Her body would go numb, or the pain would be too much. Sometimes she would have to leave school because her neck and back pain had become unbearable. Insomnia was also a big issue, or as Callie called it, Lymsomia. Many days she wouldn’t fall asleep until 3 or 4 am, and then we would drag her out for school because if she could move, she had to go.

Support System

Her teachers were beyond gracious, and the school system could have easily made her go on homebound, but she took all advanced/AP courses, so we felt if she could get one day in class per week, then that was better than having to self-teach herself all of the material. She barely attended high school, yet she kept all A’s and pushed herself with the promise that God would heal her and the hope that she would be a college soccer player driving her.

One of the biggest hurdles to get through with this treatment was to keep all the pills down. Callie felt nauseated 24/7 and threw up every single day. Many days she only ate popsicles because that was all she could keep down. Because this was an issue, Callie had to get two IV PICC lines to receive her doses of antibiotics. So around the clock, she got up, flushed her lines, and started her IV medications every six hours.

Trudging Through

I am still not sure how she did this using only one hand, but that is her spirit in a nutshell. The medications were much harsher this way and often caused horrible side effects. Eventually, one by one, her body rejected each of these meds until we reached the point that all antibiotics that could kill Lyme bacteria were now not an option because her body had rejected them all.

Deepest of Valleys

I’ve never felt the valley so profoundly. I tried my best to keep a positive spirit around Callie. I often encouraged her that God told me he would heal her. Sadly, deep down, I am human. I was full of fear she could not be cured. I knew the one source of fear, but it swallowed me. I had become her doctor and researcher over the past six years, and I thought I had to find the solution. Too many I’s in my sentence. Right!

Sometimes being faithful means going through the motions, and you must step forward in faith even when you are overcome by fear and doubt. God’s plan is always better for us than our own, and Callie and God were about to remind me that!

God’s plan revealed

Lymies clump together. Clump together to compare notes on meds, things that are working, or what on their body has gone south since the last time we saw each other. When you see another Lymie out, you are just drawn to them for a hug because you are the only people that understand just how hard it is to be that sick.

During one particular Lymie clump in Kroger, a friend we had been able to help get appropriately diagnosed shared a different type of treatment with us. It was new to us and sounded completely crazy, but what did we have to lose? We went for it! After four years of misdiagnosis and two years of harsh treatments in three days, Callie’s Lyme was gone. The Lyme was not just a little gone but GONE! This is how God has planned to heal her!

Why so long?

It is easy to wonder why God didn’t put this treatment in our path years ago. Like Kevin Bacon’s six degrees, this answer was only one degree away! The person who had successfully had this treatment lived in my hometown of Benton and was my gym teacher growing up and friends with my Mom! I’m not even sure she counts as a full degree away from us.

God’s Timing

God’s examples are sometimes non-examples, so we can share what not to do. We can share a bad experience and use it as a teachable moment for others we help along the way. God’s timing is often so we can grow and see his full majesty in the process. His glory is often better when it is revealed slowly, and we can fully appreciate God’s awesomeness.

God’s timing is so that we may be polished. Before this season, Callie was the shyest and most backward kiddo. She was a happy girl if she could go a day with no attention. This fire has transformed her to be a bold servant of God. She still doesn’t want you to look at her much, but she boldly serves even where it’s not comfortable or cool.

God’s word is true. When he speaks, what he has told us in his word is all true. There is no maybe with God. Rest in Him in the valley and wait on him.

The Bad Guys

I try hard not to come across as the crazy conspiracy lady. I do-haha! I do so for myself and those we try to help. If I sit and think about how long Callie suffered and unnecessary it is, I can turn into a crazed Momma bear. But, Momma bear mode doesn’t accomplish anything and turns my spirit into something less than what God wants me to be, which affects my witness and my ability to help others.

Bottom Line

The bottom line is the American Medical Association, and the CDC are both working against us. They continue to approve the wrong test for Lyme which, unless a tick bit you yesterday, will come back negative, and even then, it throws a false negative 50% of the time. Our doctors are not told about the Western Blot test through Igenex labs, which isn’t flawless, but it is the best we currently have. Some labs have even started calling their test the Western Blot test, which must be illegal. I’m not a lawyer, but I may have to make that my next research project-ha!

AMA

The AMA will not allow doctors to treat patients on long-term antibiotics beyond a month for Lyme disease. OHHHHH, but you can be on antibiotics for years to treat acne, so that makes perfect sense! Doctors’ hands are tied. They cannot risk their license to treat it, so why test properly? Lyme docs are watched closely by the AMA and even their fellow doctors and live knowing they are at risk. If you don’t believe me check out a Lyme page on Facebook. No one will say the name of their doctors. They are protecting them.

Proper Diagnosis

Because the AMA will not allow treatment beyond 30 days, insurance will only pay for 30 days, so many Lymies cannot afford their meds. At one point, we were paying $700 per week out of pocket because our insurance wouldn’t pay for treatment. Sadly many Lyme patients eventually run out of money, are too sick to work, and die from Lyme. Everything works against you to get properly diagnosed, and you must take it into your own hands. Don’t be afraid. You can do it!

Where We Are Now

Callie is now a healthy and active 20-year-old enjoying college, and yes, she did reach that dream of attaining a scholarship to play college soccer. Her favorite verse to share when she speaks of this season in her life is 1 Peter 4:13.

But rejoice since you participate in the sufferings of Christ so that you may be overjoyed when his glory is revealed.