Medical Issues

Callie and Her Journey with Lyme

Callie and Her Journey with LymeCallie and Her Journey with Lyme

This is all 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, Victoria.  We raised our big girls together, so I’ve been blessed to know this family for over 20 years.  Please read the story that spurred on my desire to have this Lyme Disease Series.  

I’m so proud of this young lady, and 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 going to be based on Lyme awareness and my personal battle with the disease, I’m hoping that the greater message that 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 I was dearly loved by the Father, 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 next symptom, for me, is the hardest one to reflect upon. This is the point where 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 myself getting angry. 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. Needless to say, my family is a really 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 on, and my symptoms grew worse, and I continued to be given misdiagnoses and pills. Luckily I have a really 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 afforded me the opportunity to learn what it actually meant to be a Christian. You’re probably thinking that you haven’t heard much about my walk with Christ until just 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. In fact, I made no changes at all as the years passed and my spiritual growth was utterly stagnant.

Fortunately attending camp presented the Spirit with an opportunity 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 actually entailed as well as actually believing that He had a plan for my illness. Up until this point 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 really, I was finally able to 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 into the most challenging time in my life. I can never communicate how gracious He is for doing so, this enabled 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. For me, this meant 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 literally be unable to hold my head up without using my hands because of how badly my neck hurt.

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

PICC Line Life

This was the time in my life that I ended up getting two PICC lines. PICC lines are inserted into your arm and run through your vein, all the way to your heart. This allows IV medicine to be dropped directly into your heart.  This is it can reach your entire body much faster. As much fun as this sounds already, the whole process can become twice as great as my body began 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 really rough times, I typically ran a fever of 103°F. All of 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 throughout the 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 began to notice a pattern in my body’s response to antibiotics.  After about two weeks I would become allergic and I would need to switch medicines. This happened with roughly five different medications. Eventually, I ran out of possible medications 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 more than likely God’s kind way of telling me to take it out.

So naturally, my skills of perception were not up to par and I missed this.  Even after 5 failed medications and a clog. The night after I got my PICC line unclogged, I ended up getting 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 good ‘ole western Kentucky. I will not delve into the details of the treatment that I received.  If you are interested you can obtain that information by contacting my mom.  I will tell you that after only three days, I was feeling 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 a vastly different person without this season in my life.

This Time of Suffering and Trial

This time of suffering and trial made it very clear that God was directing me towards a specific profession.  This profession will continue to carry out His will. How many 18-year-olds are able to confidently say that they know what job they want to pursue? I also cannot stress enough how pivotal of a role 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 where my walk with Christ would be without those six years.  Every single time I end up feeling 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 need to pursue to bring Him glory.  My time of sickness allowed me to see how I can 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. This is why I agreed to write this for Brandi’s blog.

God has used my mom and me to personally share healing.  We have also been able to share the gospel with over 300 people.  Countries include the US, Canada, and Norway. I do 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.

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Medical Issues

Lyme Disease Easy to Diagnose

Lyme Disease Easy to DiagnoseLyme 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 that 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, then why isn’t it standard practice for anyone that shows 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.

She did this 3-4 times each day and would become very 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.

What is a PICC Line?

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Medical Issues

Where Does It Hurt?

Where Does It Hurt?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 creeps me out to think of something that bores into my skin or my 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, all over, it is time to enlist the big guns at Igenex Labs!  This 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.  Advocate for yourself.  It can be hard and intimidating but you are your only advocate.  Be loud and be heard.

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Medical Issues

Lyme Does Not Travel Alone

Lyme Does Not Travel Alone
Tick with its head sticking in human skin, red blotches indicate an infection

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 difficult 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 well 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 is not able to 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 a month after having them, she began having her first of many symptoms.

Because Lyme Disease does not travel alone, she not only Lyme but four other co-infections that her body was battling.

Any Big Stressor

I’ve heard others have been in a car wreck, gone through a divorce, (any significant stress).  Some had gotten a flu shot, had anesthesia, or 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 Lyme Disease 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 for it.

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Crohn’s IBS Colitis Behcets

Crohn's IBS Colitis Behcets
Lyme and Co-infections illustrated on Blackboard

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, and diarrhea or constipation, or both. IBS is a chronic condition that you’ll need to manage long term”

Crohn’s Disease Symptoms are “a type of 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

Behcets Symptoms is “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, advocate.  You are an expert on your body, do not let anyone tell you any different.

 

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Part 1: A Journey of Healing

Medical Issues

ALS and Lyme

ALS and Lyme Sneaky Little Bug

ALS and Lyme

ALS and Lyme Sneaky Little Bug.  Lou Gehrig’s Disease is often misdiagnosed, however, the root is undiagnosed Lyme Disease.  This is one reason that 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.

This is why it is so easy to be misdiagnosed and miss.

Sadly, that it is the beast that is Lyme Disease

This disease is absolutely horrible.  A cure needs to be found.  The other items, listed above in the picture, are also hard.  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.  This is crazy and 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.

 

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Medical Issues

Lymsomnia?

Lymsomnia?

Insomnia or as Callie used to call it Lymsomnia is a very common 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 up with her so she didn’t feel alone.  Sadly, this is why we have so many wrinkles haha!  Insomnia is so hard to deal with.  Losing sleep, restless sleep, or interrupted sleep can cause so many other issues.  It is a never-ending cycle.  Maybe the term “Lymsomnia” should be in the dictionary.

Sleep Deprivation

Some of the 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, and more.  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.  This will likely come back negative.  This 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 completely ineffective.  There are one test and only one reliable lab in the country.  Igenex Labs.

 

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Welcome My Newest Guest Blogger Lesley

 

 

Medical Issues

What IS Lyme Disease?

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.  This 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 out as a tiny little bump begins to get bigger, warmer, and hard around the center.  That’s when you know that it is more than a typical tick bite.  Seek treatment.  Do not settle.

It is a corkscrew-shaped bacteria that gets all up in there and “screws” into place.  This makes it incredibly hard to get rid of because of that shape.  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 chose to follow 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.

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Guess Who Has Lyme Disease?

Guess Who Has Lyme Disease?

Guess who has Lyme disease:  Hereditary??

Hey!  Guess Who Has Lyme Disease?  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 properly diagnosed (or misdiagnosed) or treated promptly

Lyme disease and co-infections are a generation to generational gift.

ME!

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.

Ever notice that people in your families have similar health issues?  Do you ever wonder why or just think that 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 then seeking out alternative methods to healing 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.

For more information on hereditary Lyme Disease, please head over to GARD Website.

 

Medical Issues

Welcome My Newest Guest Blogger Lesley

Welcome My Newest Guest Blogger Lesley
Lyme disease or Lyme borreliosis. is an infectious illness transmitted by ticks that can affect dogs and people. Signs and symptoms. Human silhouette with highlighted internal organs

Welcome My Newest Guest Blogger Lesley.  Les and I have been friends for an eternity.  We met moons ago in church and then we moved into her neighborhood and became her neighbor.  We were pregnant with our oldest girls together.  Those sweet girls are now 20!  This is the story of a mama who didn’t give up on her girl or her God.  I’m so 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.  Prayers for protection and to grow in grace.  These are all the things a “good Christian Mom” prays.  This was done 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 for many we look 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 each day 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.  Now, this wasn’t the first time I have heard His voice, audibly.  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 her.  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 is sick.

Two weeks later her first symptom began.

Callie began fainting 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.  She was diagnosed by a cardiologist 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 on with life.

He claimed it was a dip in blood pressure.  This was because she 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.

To every season there is a new symptom with Lyme disease

Each year Callie added a new symptom 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 steroid shots in her knees didn’t find a solution.

She played soccer with two knee braces.  Also, she fainted while on the field.  We left the field 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 awkward trip 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 but 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 list of things affecting her daily.  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 were confusing to us because her nature is normally very kind and grace-filled.  Often she would get furious over the smallest things and look embarrassed at herself for acting so over the top.  We wrote it off at teenage girl hormones but it was actually something called Lyme rage.

Getting Sicker

More docs, more tests, and no answers as to why she was continuing to get sicker.  All of 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 she was given pills 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 but 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 again 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, right?  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……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 and 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 in 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 the familiar to me traditional medical approach he also happened to be the one Lyme literate MD in our area!  There are only and 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 even 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 often 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 that 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 the ages of 16-18, we aggressively treated Callie’s Lyme disease with high doses of antibiotics.  She took 14 pills per day, fought to keep them and any food she could manage to get in down, and continued to do everything asked.  Many days she could not get out of bed at all.  Parts of 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 she had to get two IV PICC lines to receive her doses of antibiotics.  So around the clock every six hours she got up, flushed her own lines, and started her own IV medications.

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 deeply.  I tried my best to keep a positive spirit around Callie.  Most days I encouraged her that God told me he would heal her.  Sadly, deep down I am human.  I was completely full of fear she could not be cured.  Honestly, I knew the one source of fear but it swallowed me.  I had become her doctor and her researcher over the past six years and I thought I had to find the solution.  Too many I’s in my sentence, right?  Right!

Sometimes being faithful just means going through the motions and you must step forward in faith even when you are overcome in 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 properly diagnosed shared with us a different type of treatment.  It was new to us, sounded completely crazy but what did we have to lose?  We went for it!  After four years of misdiagnosis, two years of harsh treatments in three days Callie’s Lyme was gone…not just a little gone….GONE!  This is how God has planned to heal her!

Why so long?

I think it is easy to wonder why God didn’t put this treatment in our path years ago.  Just 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 that we can share what not to do.  We can share a bad experience and use it as a teachable moment for others that we help along the way.  God’s timing is often so we can grow and see his full majesty in the process.  His glory revealed is often better when it is revealed slowly and we can fully appreciate the awesomeness that is God.

God’s timing is so that we may be polished.  Before this season Callie was the shyest, and backward kiddo you would meet.  If she could go a day with no attention she was a happy girl.  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.  Really I do-haha!  I do so for myself and those we try to help.  If I sit and think how long Callie suffered and how absolutely 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 both are 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 a flawless test but it is the best we currently have.  Some labs have even started calling their test the Western Blot test which has to be some sort of 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!  Doctor’s 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 will have to 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 insasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

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