The Lyme Labyrinth: a Crushed Spirit Before a Faithful God

"The Lord is near the brokenhearted and saves the crushed in spirit."  Psalm 34:18  

Ten years ago, I would never have thought much about Lyme disease.  My mother-in-law and a few family members were infected with it at one time or the other, but they recovered with antibiotics and moved on.  After experiencing Lyme disease first-hand, that all changed.  Over the past four years, I have written several articles to raise awareness about Lyme disease.  This blog is not intended to be specifically about Lyme disease; however, I have prayerfully considered what I believe God is leading me to write about, and this seems to be where I come back to.  In the story of my Lyme labyrinth, I would like to walk people through the raw pain amidst the battle of treating Lyme disease.  I am not looking for sympathy; however, I am offering validation to those who are suffering with Lyme disease.  People need to know they are not alone, and they need their experiences to be validated by sharing a common ground.  This is for all the courageous Lyme warriors out there and their family members and friends who are fighting alongside them.

INTO THE LABYRINTH

It was a beautiful day in early October.  Fresh air was pouring in through an open window decorated with bright fall mums.  While on the phone with my mom, I noticed a sharp irritating pain on my left foot.  There was an angry red mark on top of my foot that itched like crazy.  I discovered something about the size of a freckle attached to the irritated spot on my foot, and I pulled off the tiniest tick I had ever seen--a deer tick.  My heart skipped for a moment, and I told myself not to worry about the tick bite.  I had just finished treatments a few months ago from a reinfection of Lyme.  The healing process was difficult, but I rallied through.  I also had a horrific battle with Lyme disease in 2011 and never fully recovered, since we had determined that I had undiagnosed Lyme for at least two years.  On that October day, I knew my body was still vulnerable and that a third infection would likely agitate my already compromised nervous system, but anxiety and fear would only make the situation worse.  

My previous symptoms of joint pain and impaired mobility resurfaced so I contacted my practitioner to start up treatments again.  I thought that recovery would be fairly short since we started the treatments right away.  I didn't worry much about it or stay on top of it.  Unfortunately, the treatments did not get it all.  A few weeks later, I was feverish and weak.  When I spoke to my practitioner's office on the phone, they told me they believed I had a more serious case of Lyme this time.  I sat on the side of my bed and sobbed.  I didn't have time for this.  I had a family and a husband who needed me to be well.  My 40th birthday was coming up, and we were planning a trip to see my relatives from Kansas.  I needed to see my parents.  I just didn't want to deal with this all over again!  Realizing I had no choice and knowing what was likely ahead of me, I picked myself up and moved forward. I would just have to take it a day at a time.  

HERXING HORRORS

Many Lyme warriors report that the side effects of treating Lyme can be as painful if not worse than having Lyme itself.  This is because of a reaction called Jarisch-Hersheimer or herxing that occurs when the spiral shaped bacteria known as a spirochete die off and flood the body with toxic substances.  When detoxing certain substances and fighting other infections/diseases, we can also experience herxing or a "healing crisis" which cause temporary unpleasant and upsetting symptoms.  I think herxing from the Lyme spirochetes is much worse and scarier than other detoxes.  Hersheimer reactions can affect everyone differently as well as cycle through the course of treatment and recovery period.  Those of us with compromised immune systems and who are genetically predisposed to impaired detoxification pathways can have more significant herxing reactions.  

For me, herxing manifested in various stages and symptoms that rotated in duration and severity.  My herxing symptoms included both nerve and joint pain, weakness, nausea, intestinal pain, vertigo, tachycardia, heart palpitations, blurred vision, brain fog, air hunger, painful tightness in my chest/ribs, involuntary muscle movements/tremors, and numbness.   My herxing also resulted in severe sensitivities to electromagnetic frequencies and external stimuli such as light, visual movement, noise, and smell.  The joint and nerve pain made it difficult for me to bear weight on my legs, and I wore shorts/loose clothing that did not rub against my body or joints.  At times, the herxing caused a diminished sense of balance and my legs didn't seem to want to work correctly with ambulation, resulting in my falling over.  To lighten things up, my daughter and I would joke that I had a few too many "cocktails."  I remember one day I was trying to walk with my walker and lost control of my legs.   My two sons busted out laughing because it looked like my legs were "running" as I fell onto the couch.  These symptoms were typically upsetting and disturbing for my family, and humor made it easier for us all to cope.  

THE DARKEST HOUR

A few weeks into the Lyme herxing battle, I found myself in the darkest hour, engulfed by waves of pain and weakness.  I was mostly bedridden for almost two months.  Some days, I could barely lift up my head because the room would start spinning every time I moved.  When I tried to get up or stand my heart would start palpitating and I would have involuntary movements in my arms and legs. The bed was next to the bathroom which made things easier for me.  When the weakness and shaking was difficult to manage, my husband helped me in and out of the tub.  He arranged for friends from church, neighbors, and members the VFW help with laundry/light housekeeping and fix my lunch while he was at work.  Our three children did what they could to help with meals, laundry, and picking up. I was too weak to walk on my own so I would crawl around the house and lean on a seated walker for support.   I was determined to keep the household going and would have bouts of crying in pain and frustration over my body that seemed to be failing me.  When my husband found me attempting to do dishes and other chores on my hands and knees, he would admonish me for not asking for help.  Then, he would pick me up and carry me back to bed.  Those were heartbreaking times for all of us.

THE CUP OF SUFFERING

" 'Father, if you are willing, remove this cup from me.  Nevertheless, not my will but yours be done.'... and being in an agony, he prayed more earnestly; and his sweat becomes like great drops of blood falling down to the ground."  Luke 22:42,44

Some people say that the number one cause of death in Lyme disease is suicide.  I can't even begin to describe how hard it is to go through the battle of the Lyme labyrinth.  It is by far the most difficult experience I have ever had.  At my most compromised moments, I was completely overwhelmed by neuro-Lyme symptoms and filled with a sense of dread and fear.  There were moments when any light or sensory stimuli would cause involuntary muscle movements and horrible neurological reactions.  Some nights, I would wake up my heart racing, the room spinning, and a sensation that the bedroom walls were closing in on me while my brain was vibrating with spasms.  My body felt like it was constantly vibrating.  Everything around me seemed to be shaking and racing, and I feared losing control of my arms and legs.  I would take slow deep breaths and repeat phrases like "easy now", "slow down", or "Jesus."  I compartmentalized my thoughts from one minute to the next and talked myself into staying calm while working through the disturbing symptoms.  My life was like waking up in a never-ending nightmare, and I felt very alone and detached.  I was fighting to maintain use of my body and brain. I was fighting for my own sanity.   I didn't think I could emotionally handle the pain and neurological symptoms anymore.  I cried out for God to change my circumstances and lift up my suffering.  I could relate to Jesus's prayer at the Garden of Gethsemane when he was begging God to remove the cup of suffering.  I felt a strong sense kinsmanship to Christ in those moments.  

TRUST THE LORD

"Trust him at all times, O people; pour out your heart before him; God is a refuge for us."  Psalm 62:8

I felt completely alone, yet I had God.  No one else had the capacity to enter those dark places with me because they weren't experiencing them.  It felt like my independence was stripped away, so I had to rely on God each and every moment of the day.  Prayer and the Bible was my only weapon that got me through.  I carried around a ring of note cards with verses on them that I would recite whenever symptoms escalated and the sense of dread and fear threatened to engulf me.  When I cried out to God and begged him to do something, His silence seemed to taunt me.  Then, I closed my eyes and two words echoed like a whisper in my heart... "Trust Me."   

Proverbs 3:5 became a mantra for me as it rang through my mind over and over again.  "Lord, I can't do this anymore!"...  "Trust Me"...  "Haven't I suffered enough?"... "Trust Me"...  "I want to be normal again and able to take care of my family."... "Trust Me"...  "I'm begging you, please make it go away!"...  "Trust in the Lord with all your heart, and do not lean on your own understanding.  In all your ways acknowledge him, and he will make straight your paths."  Proverbs 3:5

He remained by my side, patiently directing me and giving me just enough strength to cope with each moment, but no more.  He was a faithful God, and I embraced His grace and held on to His promises for dear life.  I lost all of my own strength, but I gained a supernatural grace that carried me through.  In those painful moments, I lost pieces of myself, but gained a new dimension of a God that brought me to the other side of my labyrinth nightmare.  In the process I had a deeper understanding of His character and ways.  In the end, I was even able to thank Him for allowing me to share in His suffering and the ability to more fully empathize with the pain of others.  Only God has the capacity to turn something so heartbreaking into a blessing.

REBUILDING FROM THE GROUND UP

I recently read an article that described recovery from Lyme to be like rebuilding your body from the ground up.  That is exactly how I felt.  Lyme can infiltrate every system of the body, tearing down the immune system and acting as a conduit for other diseases and conditions to wreak havoc.   I spent hours poring over books on health, nutrition, gut psychology, and functional medicine; and I implemented some changes in my diet and lifestyle as a result.  My practitioner was very involved in my care and his office kept in touch with me weekly, sometimes even two to three times a week.  They were encouraging and let me know they were praying for me.  My practitioner has experienced a sense of heaviness for his patients with impaired health conditions, and spent much of his free time researching treatment options and the latest studies.  I knew he was doing everything he could to assist me in fighting this disease and rebuilding my body.  

My husband and I recognized that we needed to reach out for help, and I am so glad we did.  The first time I had Lyme, I originally thought I was crazy and had no idea what I was dealing with.  This time, I was much more educated and had a much stronger support network.  Our support network was a tremendous blessing for us, especially our friend Ron who frequently stopped by to help out and drop off supplements/treatments, and he offered rides for appointments.  He was very invested in our situation and offered spiritual encouragement and support to our entire family.

RESTORING LOST GROUND

" I will restore to you the years that the swarming locust has eaten..."  Joel 2:25

This battle with Lyme disease was very eye opening for me, as I came to realize that I had given up hope for recovering from my previous health problems.  I felt guilty for wanting to be healed because I thought I was questioning God's sovereignty.  I felt robbed of pieces of my life over the last six or seven years.  Too many times, I have missed out on family events and gatherings, concerts, ballgames, church worship, and doing "normal" everyday things with the people I loved. I didn't realize the depth of my grief until I experienced more loss.   I also discovered a part of me that was still overly focused on what others thought of me.  Almost everyone in my life have been extremely caring and supportive, but the voices of those one or two people who questioned the legitimacy of my situation and how I was handling it seemed to ring louder than the voices of encouragement.  Despite my forgiveness of others who hurt me, I felt weighed down by painful memories and grief.  

My grief and insecurity reached a turning point when our dear family friend, Ron, advised me to "nail it all to the cross."  He explained that Christ died for that and I don't need to dwell on my insecurities anymore.  When the truth of it hit me, I felt a tremendous joy and exhilaration.  I think I knew it all along, but I wasn't set free from my grief until I was torn down once again and lifted up by the hands that were once nailed to a tree.  I could trust in God's sovereignty and will free of the guilt. When I am in the perfect will of God, NOTHING else matters!  God wants me to look up and ahead towards His promises instead of down and backwards to where I've been.  He is by my side, calling me to fight for my health and not give up on gaining ground back in my life.   God has been faithful to me through each hardship, and I am grateful for joyful gifts He delivered out of my crushed spirit. 

"It was good for me that I was afflicted, that I might learn your statutes.  The law of your mouth is better to me than thousands of gold and silver pieces.  Your hands have made and fashioned me; give me understanding that I may learn your commandments.  Those who fear you shall see me and rejoice, because I have hoped in your word.  I know, O Lord, that your rules are righteous, and that in faithfulness you have afflicted me.  Let your steadfast love comfort me according to your promise to your servant.  Let your mercy come to me, that I may live..."  Psalm 119:71-77

RESOURCES

I highly recommend this video that visually demonstrates a heartbreaking yet redeeming battle with Lyme disease:


https://www.youtube.com/watch?v=So2K68r8pOY&feature=youtu.be

*I am not a doctor or an expert on Lyme disease.  The information shared in this article is based solely on personal experience and is not intended for diagnosis or treatment.  For more information about Lyme disease and my experiences with it, you can read other blog articles I have written:

lhttp://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html

http://dzehm.blogspot.com/2012/12/chronic-lyme-disease.html

http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering.html

http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering-2.html

lhttp://dzehm.blogspot.com/2015/07/the-good-fight-my-lyme-relapse.html

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Care in our Culture Part Two: Invisible Illnesses and Holistic Medicine

"Put on as God's chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness and patience."  Colossians 3:12

THE WIDENING GAP

In the fall of 2013, I watched my dear friend and mentor victoriously battle through the end of her cancer journey as she left behind a legacy of faith and courage.  Although there was some controversy with her decision to treat her cancer holistically, neither she nor her family expressed any regret in this decision.  Her desire was to raise awareness about the value in taking care of your body and engaging in a healthy lifestyle.  She was also very passionate about educating people, especially the church, about providing compassion and care for those who struggle with chronic conditions and invisible illnesses.  Around the time of my friend's death, I became increasingly aware of the widening gap in our culture, the medical community, and in the church when it comes to understanding and showing compassion for individuals struggling with these conditions, especially for those who choose to use alternative healthcare.  

Several of my friends and acquaintances who battle invisible illnesses and use alternative healthcare have shared with me their personal struggles of being hurt by criticism and insensitive comments from family, friends, and members of their church.   After spending some time in prayer and having discussions with a few Christian holistic practitioners in my church as well as my friends with chronic/invisible illnesses, I felt compelled to speak up on their behalf.  This led to some enlightening conversations and discussions involving the lead pastor and elders of my church.  They have been very open and understanding in regards to this gap.  I believe that most people have a desire to be of service and support to others; however, they may be unaware of how to help and they lack understanding of the struggles that this vulnerable group faces.  A chronic condition embarks each individual on a very personal journey that can be extremely draining--physically, emotionally, and financially.  In order to foster care and compassion in our culture, it is imperative we understand how the condition affects the individual and their unique experience that has led them to use a specific medication, treatment, or therapy for their condition.

WHAT IS HOLISTIC HEALTHCARE?

Complementary and Alternative medicine, or CAM, is a broad term used to describe a variety of therapies and medical interventions that are available through different types of health care providers.  These providers use alternative approaches to address certain diseases and/or conditions.  Chiropractors, acupuncture therapists, holistic or naturopathic doctors, massage therapists, nutritionists, and Field Control Therapy (FCT) practitioners are some of the more commonly known CAM providers.  CAM focuses on and addresses the whole person, viewing the mind, body, and spirit as interwoven together.  CAM differs from conventional or allopathic medicine.  Each approach to heath care has its place and benefit.     

Why People Choose Holistic Healthcare

●      Some desire a healthier lifestyle and prefer not to take medications or undergo invasive therapies that may expose them to radiation or other harmful substances.  

●      Adequate health insurance coverage has become more difficult to obtain over recent years and medical costs continue to rise.  Supplements and alternative treatments/therapies sometimes are significantly less expensive than the prescriptions, tests, and standard treatments/therapies that conventional healthcare offers. 

●      People often choose CAM because they are struggling with a health issue that conventional medicine has not been able to fully address.  Some have come across medical practitioners who have been unkind to them, blaming the patient or minimizing their situation when conventional medicine failed to appropriately treat their condition. 

●      Holistic practitioners treat the whole person, and they are more likely to provide services and treatments with compassion and greater sensitivity to what the patient is going through.

●      There are countless testimonies of individuals who have successfully treated their illness/condition naturally with nutrition, supplements, and non-invasive therapies.

*There are no guarantees that either conventional or alternative medicine will heal the person.  Only Jesus Christ has the power to heal and restore lives. 

Challenges and Struggles People Face When Using Holistic Healthcare

●      CAM Therapies seek to address imbalances that can lead to a disease or condition.  Often, the longer an individual has had a health challenge, the longer the length of time before the individual sees improvement and/or recovers.  In my situation, it took at least a couple of years of therapies before I saw significant improvements.  Then, when I was reinfected with Lyme disease twice in 2015, I lost a lot of the ground I had gained.  It takes a great deal of patience, faith, and prayer to endure. 

●      CAM therapies may include a process of eliminating harmful substances that can cause some individuals to have temporary unpleasant symptoms in order to detoxify and heal.  I have found that when I am being treated for the root cause of a symptom, that symptom will worsen for a time before it gets better.  That can be somewhat frightening if you do not understand what is happening.

●      Alternative practitioners do not focus on a diagnosis but can often identify factors such as the presence of harmful substances or conditions that appear to be associated with the symptoms being experienced.  This approach to health can be difficult for a patient to explain to others and can make CAM appear less believable when they are unable to do so. 

In my experience, some individuals who use CAM to treat their health conditions can feel isolated and may become withdrawn or depressed.   I believe there are several reasons for this, including the following. 

●      There is a prevailing attitude that Conventional Medicine is superior to CAM.  Conventional Medical professionals may not be aware of the extent of research or level of success CAM has had in helping individuals with their health challenges.

●      Family members and friends may not understand the holistic treatments/therapies the person is utilizing and question the legitimacy of alternative therapies.  They may also minimize the individual’s condition or suggest they see a doctor without taking the time to understand the specific circumstances.

●      There can be a perception in the Christian community that CAM involves New Age, false religions, and deceptive practices.  Well-meaning Christians may verbally reprimand the person, telling them they are deceived and practicing something that is “spiritually wrong.”  

  I have talked to a few Christian alternative healthcare practitioners about this and they all have openly admitted that in this venue of healthcare there are practices and practitioners that utilize New Age and other pagan philosophies that should be avoided.  They have told me there is a line you draw and don’t cross—that is where prayer and discernment must come into play.  On the other hand, God is holistic in nature and He uses many ways to heal and provide healing. I believe there are many legitimate alternative therapies out there that do not cross this line.

*When individuals are both physically and emotionally vulnerable and family/friends as well as those in the church body speak words of judgment and scorn without trying to learn more about the therapies the person is doing and why they have chosen holistic healthcare, those individuals have the potential to shut down emotionally and isolate themselves from others, feeling as though they have to face this journey alone!  We as a church should be aware of this situation so we can Bridge the Gap for them!

A HUMBLE LEGACY- KELLY'S STORY

"My heart and flesh may fail, but God is the strength of my heart and portion forever."  Psalm 73:26

When Kelly Peterson was diagnosed with breast cancer in 2010, she made the informed decision to treat her cancer holistically despite the overwhelming fear, scorn, and opposition from doctors and other people in her life.  She had an incredible support system throughout her cancer journey; however, she also received criticism from those who disagreed with her decision to use alternative healthcare.  She also witnessed the loneliness and isolation of others with similar experiences.  Instead of feeling sorry for herself or holding on to any resentment towards others, Kelly let it go to God and trusted His guidance to use her situation as an opportunity to help others.  Kelly decided to use her insights to take action and instigate change.  In the last 2 years of her life, she took notes for a book she planned to one day write.  Her goal was to guide individuals with family/friends who have cancer or a chronic illness and use alternative therapies to treat their conditions.  She also wanted to educate the church body on how to better assist and care for these individuals.  Although Kelly did not have the opportunity to complete her book, she did put together a list of the insights that she discovered during her journey.  Kelly's family has expressed a strong desire to share these notes with the public in order to raise awareness about individual needs and to improve the quality of life for those facing these struggles.  The following information was derived directly from Kelly's notes and personal observations.  

How to Help and Encourage Someone with an Invisible Illness or Chronic Condition 

• Remember that they are sick and trying to fight a disease/condition, even if they may not LOOK like it.
• It is more beneficial to LISTEN and be there for the person instead of questioning if their illness is real or not, questioning the legitimacy of their treatment/therapy, or offering excessive advice.
• Sympathize and be understanding of where they may be at or may be feeling (mourn with those who mourn).
• While it IS good to ask them how they are doing, don't let that be all you ask them.
• Tenderly, tactfully, and timely speak hope into their hearts and minds.
• Rejoice with them in their small victories.
• Call periodically and ask them how they are doing.
• Pray with them in person and on the phone.
• Send cards with notes and prayers of encouragement.
• Send unexpected flowers to brighten their day.
• Show them genuine interest in their treatments/protocols by listening and asking SPECIFIC questions.
• Offer to do some research online for them.
• When telling someone "let me know if there is any way that I can help", keep in mind that while you may think this is helpful, it is not because #1) It is very hard for anyone to ask for help and #2) They have so much going on they do not have the time or energy to think of ways you can help and sometimes they are just trying to make it through the day.  Instead come up with specific ways in which you can offer to help.
• If you live near the person, ask them, "Would it be helpful if I texted you before I run errands so that I can pick something up for you?"
• If they are housebound, offer to run errands, grocery shop, take their kids shopping, etc.
• Offer to do some chores and clean for them so they can rest, i.e. vacuum, laundry, cook meals, clean bathrooms/kitchen, etc.
• Offer to help "declutter" their homes, work on the computer for them, or assist with other household tasks.
• Offer to take their kids out for the day or weekend-- the situation can be very stressful and upsetting for the children.
• Offer to do seasonal outdoor chores, i.e. plant flowers, weed garden, mow lawn, shovel driveway, rake leaves, wash windows, clean gutters, etc.
• Put together a support team for them.
• Organize a phone chain where people are calling regularly to check on them.
• Coordinate the regular delivery of meals for them and their family (ask about specific diet restrictions).
• Coordinate a schedule of individuals to help with daily chores/house cleaning, rides to appointments, and other needs.
• Assist in putting together a schedule of daily protocols for alternative therapies.
• Get them a massage (great for the lymph system) or offer to take them out to see a comedy show (laughter is good medicine!).
• If you live in the same household, adopt a healthier/similar diet. 
• Help reduce any unnecessary stress in their lives, i.e. relational/family, work-related, household clutter, etc.
• Read some of the books they are reading with them.
• Go to appointments with them and/or drive them there if they are not physically able to drive on their own.

What the Local Church Can Do To Help

• Arrange for elders in the church to pray with them and anoint them with oil.
• Coordinate individuals to call and/or come to their homes to pray with them on a consistent basis.
• Call and check on them regularly.
• Post specific needs on a website or email.
• Coordinate financial assistance, offerings, donations, etc.
• If they are unable to physically leave their homes, offer to bring "church" to them by singing worship songs with them, studying the Bible together, etc., as they may be yearning for the fellowship and spiritual connection that occurs in corporate worship.

How to Assist Individuals Financially

• Coordinate a fundraiser to offset medical costs, treatments, and therapies.
• Ask what therapies they are doing and if you can pick something up or help pay for it.
• Offer to pay for one supplement each month.
• Offer to buy a piece of at-home medical equipment or device/treatment.
• Deliver organic groceries to them.
• Offer to purchase a book they have expressed a desire to read in order to learn more about their disease or condition.

BRIDGING THE GAP AS A CHURCH

"What good is it, my brothers, if someone says he has faith but does not have works?  Can that faith save him?  If a brother or sister is poorly clothed and lacking in daily food, and one of you says to them, 'Go in peace, be warmed, and filled,' without giving them the things needed for the body what good is that?  So also faith by itself, if it does not have works, is dead."  James 2: 14-17.

We as a church have the opportunity to show support, compassion, and minister to individuals in their unique and vulnerable situations, but we can’t do that without understanding their struggles and taking the time to hear them out.  It is crucial that we are made aware of these issues so that we are better equipped to help and come alongside them.  I believe that God can equip us to come together as a people with compassion, love, humility, and forgiveness when necessary.  We just need to open our hearts and our eyes to see where He leads us and the love He provides.  Then, we are able to bridge the Gap!

"Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind."  1 Peter 3:8

RESOURCES

To see the first part of this article on Invisible Illnesses/Disabilities:

http://dzehm.blogspot.com/2015/10/care-in-our-culture-part-1-invisible.html

For more information about Kelly's story, alternative healthcare, and how to help individuals with chronic illnesses, you can read these blog posts.

http://dzehm.blogspot.com/2014/05/kellys-hope-womans-life-legacy-and.html

http://dzehm.blogspot.com/2014/06/kellys-hope-part-two-building-on-legacy.html

http://dzehm.blogspot.com/2014/08/kellys-hope-part-three-bridging-gap.html

http://dzehm.blogspot.com/2015/02/the-voices-of-lyme-voice-of-battle.html

http://dzehm.blogspot.com/2013/11/health-wellness-and-beauty-of_4739.html

http://dzehm.blogspot.com/2013/06/embracing-wellness-through-alternative.html