"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
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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