Lyme Disease Awareness

Lyme. One word that has changed every second of my life for over 7 years and counting.  I’ve lost track of how many times my illness has been questioned or dismissed, even before it had a name. The embodiment of “invisible illness” which can make you feel even more invisible. The whole way through, even to this day, I am met with doubt and suspicion that I couldn't possibly be so incredibly sick, because I "look" so nice.

Sadly, our medical system has failed so many of us. Very few are truly educated on the severity of Lyme Disease. The condensed and honest truth? 

Borrelia burgdorferi (aka: Lyme - no “s” at the end) is caused by a corkscrew-shaped bacteria called a spirochete that can spread and infiltrate every part of the body through the blood.  It burrows so deep into organs and even bones creating biofilms to protect itself while changing its DNA, shape, and function often to avoid being killed as it escapes detection by the immune system and goes undetected on tests. There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the United States, and 300 strains worldwide.  Lyme disease gets its name from a small town in Connecticut called Lyme where many cases were first reported and it is the first cousin of syphilis.

Everyone responds differently to Lyme, which makes it even more difficult to diagnose and treat. Lyme Disease is most commonly transmitted by a tick, but can be transferred through other hosts of animals, insects & even from a mother to her child in the womb. Less than 50% of patients recall a tick bite and only 17% find the tick. Often people with Lyme disease don't experience a rash.  Currently there is no cure for this disease, though you can become symptom free.

Once Lyme crosses the blood-brain barrier, it can invade the nervous system, leading to a range of extreme and life altering neurological symptoms that slowly destroy one's life. It is able to infect any organ in the body, including the brain, nerves, joints, gut, heart and muscles, causing a range of serious systemic issues that closely resemble conditions like Chronic Fatigue Syndrome, Fibromyalgia, Bell's palsy, MS, ALS, Parkinson’s and Alzheimer’s. So often, people get diagnosed with these labels when the root is actually Lyme disease and any of the 18 tick borne diseases that can be transmitted from a single bite of a tick. There are 300 known symptoms linking just to Lyme.

There is no standard treatment that consistently provides effective relief for everyone who has this disease, especially cases that were undiagnosed for an extended period of time. For those patients, it cannot be cured with 30 days of antibiotics, anti-inflammatories, positive thinking, exercise, or even the right diet. It can take years to diagnose and then even more years to recover. It is common to have lasting damage from the havoc it creates. There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme disease has reached remission.

Lyme is as insidious as cancer. Despite this, it receives very little funding or research from our government.  The CDC's treatment guidelines are completely outdated and they don't even recognize chronic Lyme disease. Those doctors who do try to help are often penalized or worse. Treatment is not covered by insurance, leaving patients with out-of-pocket expenses in the tens of thousands of dollars each year in hopes of reaching remission or even just a break from the nightmare and trauma.

Lyme teaches you brutal and yet priceless lessons. How to smile through the pain and brush off how you are actually feeling. You learn very quickly what it really means to love. How terrifying it can be to lose others and yourself as you cling to any sense of normalcy. You learn how greed and profit directly affect healthcare and experience firsthand the true impacts of gaslighting. So many doors are opened that are dead ends as your finances continue to wither away faster than you ever expected.  You are stuck with needle after needle just praying that someone will catch the beast inside of you that is slowly trying to kill you and actually be able to do something about it.

Lyme is one of the darkest and loneliest illnesses a person can go through aside from mold illness and it will try to rob you of almost everything. Mold illness will try to rob you of what is left. Lyme and mold often go hand-in-hand because they impact the same detoxification pathways in your body.  Often a person can have dormant Lyme that comes roaring out after being impacted by toxic mold exposures. Alternatively, Lyme can make you far more sensitive to mold in your environment.

Through this journey you suffer heartbreak after heartbreak. There have been so many times I wanted to escape out of my body because of the pure torment that I was feeling inside of it. This illness has touched every part of my body, my life and my family. So much pruning and moments of faith being tested. It has changed me in hundreds of ways. I have often wondered how I can possibly take it anymore... yet God continues to meet me in those moments and give me a fresh outpouring of His grace and strength to keep pressing on. He continues to refine me into who I was always meant to be and enables me somehow not to grow bitter. There's so much more wholeness in my life now that is not dependent on whether or not people understand my journey. I am living for an audience of one.

I would not be here today if it wasn't for Jesus and Jesus alone.  He has sustained me, carried me and enabled me to find clear purpose in this valley. Walking the narrow road of healing can be lonely and utterly messy, but the glimmers of Him that I continue to find along the way are invaluable. To feel endless suffering inside my body and yet still breathe God in and know He's right there in the midst of it all. My healing is currently in small layers and victories. And I'm realizing how beautiful those can be.

Like others walking a similar path, there are many reasons for my sickness and Lyme is just one of the pieces of the puzzle that we have put together. And though Lyme is extremely difficult to treat, I know that God is able to do the impossible. That is where my hope is found. When I am healed and thriving again, it will be fully through my Jesus, because there is currently no earthly cure for Lyme.

It's Lyme Disease awareness month, and this is our families reality as Lyme as touched each one of us. This disease is a silent epidemic but the silence is growing louder each year as more people continue to be impacted. No one deserves to suffer from this disease, and no one can overcome it alone. I pray one day for full healing or remission. Until then, I will keep fighting, holding onto hope and declaring that the blood of Jesus speaks a better word over my body than Lyme.

"And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore and make you strong, firm and steadfast."

1 Peter 5:10