Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

A Journey of Healing

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A Journey of Healing

I will only discuss this last leg of our journey as we step out of our finite “reasonable” box and into infinite faith.

Hope

Our journey is hard to explain without sounding like I live on another planet. So trust that God is good even when we don’t understand. That with Christ, all things are possible. HOPE. Here is a taste of what the Lord has been showing me.

Several years ago, my friend shared the story of her daughter’s journey with Lyme disease and how this place, this whack-a-doo treatment, and faith saved her daughter’s life. She tried to explain it to me, but I had no clue what she was talking about, so I listened, asked questions, and rejoiced in her daughter’s healing.

I have mentioned this place to several friends, who struggle with autoimmune issues, and I just put a bug in their ear, and then I give them Les’ number. Take the middle man out of it. I praise Jesus every January because that is when Les and her family stepped out on faith and tried something different than traditional medicine.

June 6, 2017

When H woke up from his nap on June 6, 2017, our lives changed forever. Our first dx was from a local hospital. In reality, a chigger should not EVER go there, but whatever. They diagnosed H with Strep, though he tested negative. “Give him these antibiotics, and he will be fine in 10 days.”

Uhm, did you get your degree from a Cracker Jack Box?

He cannot walk.

Hospital 2

We left and immediately drove to a children’s hospital out of state. We stayed there for several hours and then got the second dx. They said he had Cerebellitis. It is a common diagnosis when a child presents with the symptoms he presented with when we got there. The dr said it would run its course (virus type thing), and he should be better in 10 days.

Yep. That did not sit well with me.

 So, we made some calls to a friend who worked for a Neuro. Another friend has boatloads of experience with Neuros because her daughter has TM. Also, we talked to our parents and my sister (H’s Mamaw). Then we decided to take him to a different children’s hospital and see if that neuro agreed with the first neuro.

Hospital 3

We came home, spent the night, and then I got up early with H and headed to another hospital, alone, genuinely thinking this neuro would agree with the last neuro. Yep, that didn’t happen.

That was the beginning of our worst nightmare.

It is so easy to praise God when all is good in the world. When things are running smoothly, and all things are moving and grooving in a good flow. I picture my family and me sitting around a campfire singing Kumbaya. Then, you see your fire starting to go out, and it is getting cold outside, and you are frantically searching for anything and everything you can burn to get that fire back.

Before you know it, a bird flies overhead and pees on your ember. Your flame is gone, and you are sitting there, cold and in the dark. You think it can’t get much worse but have eaten that last s’more. Now you have no heat, light, or food. It is doable, sucky, but doable. Then the monsoon hits, and you feel like you will never be out of this space, and your fire will never come back.

Offical “Clinical” Diagnosis

Our official clinical diagnosis was made at another hospital. Sadly, there is no definitive test you can do. There is no amount of MRIs, LPs, blood work, X-rays, or EEGs. Nothing can officially say this is what you have. It is a combination of symptoms and what they equal up to after you test for everything else on the planet.

Opsoclonus Myoclonus Syndrome was 1 in 10 million. Once this diagnosis took hold, I did TONS of research. I joined a wonderful online support group and received encouragement and a wealth of information.

Protocol by Dr. Frank Pranzetelli

We started high-dose steroids while hospitalized. We also started our first of many IVIG treatments. IVIG was done monthly. Closely following coming home (in the hospital for about 12 days), we start Rituximab (a type of chemo). The total on that was about four treatments. Since those were not working, we moved to add in ACTH. Acthar (ACTH) is a shot that we give him daily. It is another type of steroid. We did this for about three mths. All this did was to MAGNIFY his rage, insomnia, and severe OCD tendencies. My sweet little boy was not there anymore. He was like a raging animal that always stayed in a fight or flight mode.

Second Opinion

I was getting a second opinion without permission! Dr. Lightner answered so many of my questions. She was open, honest, and forthright, and in-my-face wording helped me immensely. Dr. Lightner was a breath of fresh air, though I did not care what she said.

 She stated that H’s condition was more progressive. Dr. Lightner did not see the ocular flutter, which, to her, ruled out OMS. She wanted to run all the tests again. The previous test had been a year ago. Note that she was wrong. He did have OMS. H was assessed correctly and diagnosed at UPMC in Pittsburgh by the amazing Dr. Kavita Thakkar.

Part 2: Have You Ever Tried to Nail Jello to a Wall?

 All tests returned the same, and while he was at the hospital, the ocular flutter reappeared, making her believe that it was OMS (confusing, I know). So, in the end, we felt confident in this “clinical” diagnosis. She said, in her opinion, she would try the protocol again, but that is something I needed to discuss with our regular neuro, as she was confirming a diagnosis.

Zebra versus Okapi

In the medical field, a ZEBRA means an unlikely diagnostic possibility. It comes from an old saying used in teaching medical students. These students are taught how to think logically regarding the differential diagnosis: ‘When you hear hoofbeats, think of horses, not zebras.’ H was not a horse. We THOUGHT he was a zebra. Then, we discovered that he is NOT a zebra. He is an Okapi (incidentally my all-time favorite animal). They are incredibly rare.

 Unconventional Treatment

As we were finishing up an “unconventional” treatment plan for our son, we decided to give our family a bit of respite—SonRidge Health and Healing Center in St. Augustine, Florida. Dr. Marty Monahan took over the business with Jack Garvy retired.  

I have 11 people in my immediate family. Everyone is going in a different direction. We have one struggling with depression, one planning her life, and one who can’t keep her head above the waves. There is one who is ready to launch, one whose deficit and valley get larger and larger, and one who is stepping into puberty. Then there is the one who can either walk or not walk based on any given day and circumstances.

Add that to a mentally exhausted mama, an overworked daddy, and a strained marriage, and you see that we all needed new scenery.  5 Days After my Son’s Treatment.  

This Happened: My Boy is WALKING

My Boy is WALKING after three intensive days of therapy. I can’t even adequately verbalize my emotions. Amazingly, I watched him stand up by himself. As a result, this was a moment I will never forget. Then, because He is incredible, he RUNS to the ocean. I’m so thankful that I caught that on my camera. I got the best video; ironically, my camera attached a still shot. Yes, it is framed in my house. H, running to the ocean, carrying a stick. Fearless, confident, and strong. I’m amazed at God’s goodness. We still have a long road to go. Realistically, this is an unknown condition. God has healed him. We are just waiting for the complete manifestation of that healing in his little body.

Let’s Absorb

My Boy is WALKING!!!!!!!!!!! He is still shaky, but he is out of that damned wheelchair. Honestly, he does not even need the gait walker. He gets tired quickly, but when he is up, he runs. It is a miracle from God. I know that the stripes of Jesus have already healed him. Today, I have seen with my eyes instead of hearing with my ears.

Meet My Okapi Miracle

What a miraculous moment. God is always good, yet when you see your son walk unassisted for the first time in MONTHS.  You CHOOSE to give God the glory because He is the only one who deserves it.  God is writing H’s story. He has been writing since before He created the Earth.  I get to sit on the sidelines and enjoy the view.

He has all the provisions in place for H. For what he is dealing with and all trials that he is currently going through.  God is good. He is faithful.  Our family will heal. Our son WILL heal.  He is strong, kind, brave, and good. I will hold onto this moment for the rest of my life. My heart almost explodes every single time I see it.

He just got up, running to the ocean. The ocean is his haven and his safe place. The bathtub, not so much. The shower, not on your life. He is not even fond of the swimming pool.  When you see the ocean’s vastness, one would think he would be afraid. 

Fear. It is not in this boy’s vocabulary regarding the ocean.

He is simply fearless.

Guest Blogger, Lyme Disease, Medical Issues

Lyme Disease Information, Diagnosis, and Healing

 

Lyme Disease Information, Diagnosis, and Healing

Lyme Disease Information, Diagnosis, and Healing

My friend, Lesley Emerson, wrote about her daughter’s Lyme Disease journey a few years ago. Soon after that, we did a series of informational posts on Lyme. After the series, Callie was brave enough to write and bear her soul on this journey of illness, healing, and faith. To ensure this story is not buried amongst other blog posts, I thought I would consolidate them all.

What is Lyme Disease

What IS Lyme Disease? Borrelia: A tick-borne illness that can cause fatigue, flu-like symptoms, and a bulls-eye rash. The bulls-eye rash is only one part of Lyme Disease. There are about a billion other things that are comorbid with this disease. The bulls-eye rash is unmistakable. What starts as a tiny little bump begins to get bigger, warmer, and hard around the center. That’s when you know it is more than a typical tick bite. Seek treatment. Do not settle.

It is a corkscrew-shaped bacteria that gets all up and “screws” into place. The shape makes it incredibly hard to get rid of in the body. There is so much information on the CDC website.

I mean, look at that list above. ALS! MS! Alzheimer’s! Lupus! Bi-Polar Disorder! There are so many more. I’m so thankful for where the Lord led us.

As we followed His path, Callie was healed through non-typical methods. Step out of your box—color outside the lines. Be the patient who does not settle for a blanket diagnosis. Find the root of your illness. You can do this because you are capable and strong.

Lyme Disease Easy to Diagnose

Lyme Disease is easy to diagnose and is easy to treat. You might assume that if it were a possible cause of your illness, your medical provider would have considered that before your diagnosis, and there’s no need to discuss it now.

If Lyme Disease is easy to diagnose, why isn’t it standard practice for anyone showing signs of autoimmune illness, mental illness, autism, or other related illnesses? It’s pure and simple, and nothing shows it better than this picture of Callie administering her IV antibiotics that cost us (with insurance) $700 per week. 

Yes, we had insurance, but they paid for only the first 30 days of treatment. Thirty days is not nearly enough. Callie did this 3-4 times each day and would become very ill afterward. Our medical system has been taken over by greed, thus tying the hands of and misinforming our medical personnel.

I admired his conviction, but honestly, I cannot imagine risking my livelihood for someone I barely know. Please do not assume your doctors considered the possibility of Lyme before diagnosing you with something else.

Btw we found a much cheaper alternative, so don’t let that scare you.

Guess who has Lyme disease: Hereditary??

Hey! Guess Who Has Lyme Disease? ME!

By definition, the word hereditary means determined by genetic factors. Simply put, it can be passed down from generation to generation because Lyme is not correctly diagnosed (or misdiagnosed) or treated promptly. Lyme disease and co-infections are a generation-to-generation gift.

Although I’ve never been sick like Callie was, I know I am a carrier of this little gem because she had it. A tick can carry Lyme disease. However, Lyme is likely to be congenital.

Have you ever noticed that people in your family have similar health issues? Do you ever wonder why or think you are next in line for XY or Z? It doesn’t matter that you have had a negative test for Lyme.

Callie Had Three Negative Tests

The discouragement is real. Also, the weird and random symptoms were real. Fighting, going against the grain of society, and seeking out alternative healing methods is the key. I’m not saying that modern medicine is not something you need. It is. What I’m saying is sometimes you need more.

Lyme Disease does not travel alone. It’s important not to think chronic Lyme disease only stems from ticks. It is most often congenital and is a gift handed down from your parents.

One of the reasons it can be challenging to diagnose or be considered is because the symptoms are so broad. The signs are widespread because several co-infections go along with Lyme, and everyone has a different combo of them.

Lyme never comes alone. It always brings at least one co-infection. Your symptoms may be fatigue and pain, while another has migraines or depression. That’s because you have different co-infections.

Callie had Lyme and four co-infections. Guess who tested positive (although symptom-free) for Lyme and the same four co-infections?

My parents–yup!

Why are they symptom-free? Here’s how it works: God made you with a fully functioning immune system, and if we left it alone, it could handle all the gunk we inherited, plus things we are exposed to now.

Any number of things can give it a whack and make it limp a bit where it cannot fight at its full potential. When that happens, some of these fundamental things can pop up. Of course, we all know that the food we eat and all the junk we are doing to ourselves are a factor. Then other things can give your immune system a whack that’s just enough to be a trigger.

For Callie, it was an exposure to an insecticide (probably while playing soccer). Then she had her 6th-grade booster shots. That whacked her body just enough that she began having her first of many symptoms a month after having them. Because Lyme Disease does not travel alone, she not only Lyme but four other co-infections her body was battling.

Any Big Stressor

I’ve heard others have been in a car wreck or gone through a divorce (any significant stress). Some had gotten a flu shot, had anesthesia or had a significant health crisis. Afterward, their symptoms began.

All of those things can affect the function of your immune system letting congenital Lyme take over. Once Lyme Disease takes over and does not travel alone, other symptoms begin to emerge.

So if your family tree looks similar to the one below, there’s probably a good reason.

ALS and Lyme

ALS and Lyme Sneaky Little Bug. Lou Gehrig’s Disease is often misdiagnosed. However, the root is undiagnosed Lyme Disease. Lyme is such a sneaky little bug.

There are so many things that run comorbid with Lyme. The comorbid diagnosis is the one with the name, when Lyme gets away, undetected. Again, have your doctor do testing through Igenex. That is the key. Please, advocate for yourself if something seems off.

Sadly, it is the beast that is Lyme Disease.

This disease is horrible. A cure needs to be found. It saddens me that one little thing can cause and wreak so much havoc. So often, it is misdiagnosed, and people suffer. Needlessly. I mean, I had Lyme show up because my mom had it. We have to advocate for ourselves and our health. No one else will do it because only you know you.

For more on ALS, please check out The ALS Association.

Where does it hurt?

So, where does it hurt? Your joints, your head, your fingertips, your back? Why are there so many symptoms of Lyme disease?

The bacteria is corkscrew-shaped and can bore into any tissue or organ in your body. How scary is that? It makes me think of something that bores into my skin or organs.

Some people have neurological issues because it is predominantly in their brain, some in their digestive tract or back, or anywhere from the top of your head to the bottom of your toes, making it difficult to diagnose just based on symptoms alone.

Testing is super easy with the Western blot test from Igenex Labs!

When your body is hurting, it is time to enlist the big guns at Igenex Labs! Igenex is the lab that has the most accurate test results. Other tests may come back as a false negative. You want to be accurate in determining whether or not you have Lyme Disease. Please be wise. Ask questions. Be an advocate for yourself. It can be challenging and intimidating, but you are your only advocate. Be loud and be heard.

Lymsomnia

Insomnia, or as Callie used to call it, Lymsomnia, is a prevalent symptom of Lyme disease.

Before treatment, insomnia kept Callie up all night, anywhere from 2-4 nights per week.

That fact adds up over several years. Erik and I took turns sitting with her so she didn’t feel alone. Sadly, this is why we have so many wrinkles, haha! Insomnia is so hard to handle. Losing sleep, restless sleep, or interrupted sleep can cause many other issues. It is a never-ending cycle. Maybe the term “Lymsomnia” should be in the dictionary.

Sleep Deprivation

Some signs that you may be struggling with sleep deprivation are memory issues and critical thinking skills. There can be mood changes, high blood pressure issues, weakened immune systems, etc. Most people blindly accept what diagnosis they are given. Then, they do as the instructions say on the bottle. But. What if it is more.

Sound Familiar?

If you are reading this and these things sound familiar, do not ask your doctor for a Lyme test. A Lyme test will likely come back negative. A negative test is one of the reasons so many people are slipping through the cracks. Also, not getting a proper diagnosis. The test most doctors use is entirely ineffective. There is one test and only one reliable lab in the country. Igenex Labs.

Crohn’s IBS Colitis Behcets

Crohn’s IBS Colitis Behcets Most of the “Lymies” I know have been told they have IBS.

IBS is “a common disorder that affects the large intestine. Signs and symptoms include cramping, abdominal pain, bloating, gas, diarrhea or constipation, or both. IBS is a chronic condition you’ll need to manage long term.”

Crohn’s Disease Symptoms are “inflammatory bowel disease (IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss, and malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people.”

Colitis

Colitis Symptoms is “a chronic digestive disease characterized by inflammation of the inner lining of the colon. Infection, loss of blood supply in the colon, Inflammatory Bowel Disease (IBD) and invasion of the colon wall with collagen or lymphocytic white blood cells are all possible causes of an inflamed colon.”

Behcet’s

Behcet’s Symptoms are “a rare disorder that causes blood vessel inflammation throughout your body. The disease can lead to numerous signs and symptoms that can seem unrelated at first. They can include mouth sores, eye inflammation, skin rashes and lesions, and genital sores.”

It’s on my list of medical things that have popped up. However, we’ve given it a name. Surprisingly, we did not check to find a root cause. For example, with Lyme, any muscle in your body can spasm. Also, tummy troubles and Lyme go hand in hand.

Please, be aware, ask questions, do not take NO for an answer, and advocate. You are an expert on your body, do not let anyone tell you any different.

 

Guest Blogger, Lyme Disease, Medical Issues

Callie and Her Journey with Lyme

Callie and Her Journey with LymeCallie 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.

Guest Blogger, Lyme Disease, Medical Issues

Welcome My Newest Guest Blogger Lesley

Welcome My Newest Guest Blogger Lesley

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.