If Pain Had a Sound: The Hunt for Relief is Riddled with Hope and Madness

Written by: Katie Liljedahl, Lyme patient

BAL Spotlights Series

 

Spine strangled, muscles on fire, bones buzzing
I will migrate within you
I am relentless
My address is your body
This is the kind of pain that rages silently in
the caverns of marrow and suffocates hope.
It gyrates and bangs clamors and rattles
A parasite upon the soul~
it drowns out the voice of God.

– Katie’s journal; August 16, 2012

After years of symptoms and countless doctors, I was diagnosed with fibromyalgia in 2008 while living in Santa Barbara, CA. Thankful for a “diagnosis” (spoiler alert: it isn’t), I left the doctor’s office with a prescription for an antidepressant and the advice to “go swimming.” 

This marked the first step in me coming unraveled from my intuition as the men in the white coats busted out their pad for scripts in a decade-long pursuit to pump me full of serotonin. In 2010, chaos reigned over my body, and the fibromyalgia that I had been managing flared into an inferno of pain. It was as if the pain had its own heartbeat, its own rhythm, its own battle song as it mocked my pathetic attempts to defend my bones.

Desperate for relief, I used my curled fists to bang upon my hip bones in attempts to rattle the pain out of my body. I bought every type of pain lotion imaginable, slathering myself head to toe while massaging electrical toothbrushes into my jaw and hitting my shoulder blades with wooden spoons. I was a mad woman. My madness and my mission—my single pointed obsession—was upon one thing and one thing alone: relief.

Yet nothing—no pill, no supplement, no fancy hybrid of weed, no latest and greatest CBD oil, no diet, no mantra—nothing provided a degree of that which I sought. Just stop hammering me. Just stop squeezing me. Just stop.

I gave up gluten, I gave up alcohol, I gave up sugar, and then one day it got so bad I gave up coffee. I followed the AIP protocol, the lecithin diet, and the body ecology diet. The pain didn’t care what I ate. And then the migraines set in. Searing into my right eyeball and jabbing my right temple like a caffeinated northeasterner with an ice pick on a mission.

The hunt for relief from fibromyalgia is riddled with hope and madness. From CBD to colonics there was a different approach each week with each one targeting something as a scapegoat to the pain. First was the medical goose chase in which my uninsured self spent years’ worth of savings on tests to check hormones, genetics, food sensitivities, mono, autoimmune—and yes—Lyme disease.  “Your blood work is fine,” the doctors said. “Everything looks fine. You look fine.”

Then it was toxins. Toxins—like bed bugs—were now the invisible and malicious culprit that needed to be purged out of my blood, bones, and bile. So, off to the spa I went with a 24% APR credit card spending money I didn’t have for a kind, over-tanned lady to stick tubes up my behind and flush my intestines clean. Ten colonics later, I was thinner and more regular, but the pain raged on.

“ ‘Your blood work is fine,’ the doctors said. ‘Everything looks fine. You look fine.’ ’’

– Katie Liljedahl

Exercise and sleep; exercise and sleep; exercise and sleep. That was what the doctor ordered. My Type-A personality was getting the exercise part done. I ran religiously, but each run was a deeper warning that I wasn’t who I used to be, and that six-mile runs were no longer part of my path as one unbearable mile jog slowly replaced my running routes that had been the foundation of my mental and spiritual health since age 15. As my runs dwindled from five miles…to three…to one…to zero, I began to feel for the first time in the illness’s life…elderly.

I was twenty-eight years old. I had been an all-star pitcher making headlines in high school along with being star forward of the soccer team. I was a runner, a surfer, and a yogi. I had traveled from Connecticut to Charleston for my degree in English and flew to California with the love of my life. I could do anything. Yet here I was hobbling to the bathroom. How did I become elderly? What was happening to my body? Please stop hammering me. Please stop squeezing me. Please stop.

Thus began the pill popping goose chase that drained hundreds of dollars and left my body a sad, empty shell of serotonin and dopamine. I gave up on wondering why the men in white coats were so focused on whether or not I was depressed. Just give me the pills. Just make it stop.

All of this, instead of relief, resulted in me lying weak and lifeless in a hyperbaric oxygen chamber in Dr. Issels’ office in Santa Barbara for Alternative Cancer Treatment receiving oxygen therapy treatments that a magazine article recommended for fibromyalgia. If I was an alcoholic this would have been rock bottom. 

“I was twenty-eight years old. Yet here I was hobbling to the bathroom. How did I become elderly? What was happening to my body? Please stop hammering me. Please stop squeezing me. Please stop.”

– Katie Liljedahl

Instead, I was a fibromyalgia patient, and this was hell’s foyer. The exhaustion had heaved its way into my bones making me too tired to pursue the hunt for relief. Instead, I succumbed to the warm world of hospital gowns and linoleum floors as I surrendered into the spaceship-like oxygen chamber and felt the embrace of the maternal nurses covering me with blankets and asking if I needed the lights dimmed.

With fibromyalgia flares it is often like time stops for you and you alone. The flare ends. In like a lion out like a lamb and you are left with your life unhandled and untouched since time froze you. You pop your head up and assess the damage. How much is recovering from this flare gonna cost?

I recently read a story about a woman who suffered from chronic pain who told her doctor that her family just didn’t understand, and with three boys and a husband, she wasn’t getting any help at home. The doctor put a cast on her arm and the whole family started pitching in. Out of sight out of mind. 

What if pain were not silent? What if it were not invisible? What if it were a noise or a color? What if pain had a sound? While sitting in a doctor’s office recently, I felt like I was in a science fiction movie as my body was screaming in agonizing pain, but nobody turned to look. I wanted to turn to the woman seated next to me and say, “Can’t you hear that?”

“What if pain were not silent? What if it were not invisible? What if it were a noise or a color? What if pain had a sound? I felt like I was in a science fiction movie as my body was screaming in agonizing pain, but nobody turned to look. I wanted to turn to the woman seated next to me and say, ‘Can’t you hear that?’ ”

– Katie Liljedahl

“But you look fine.” This is what someone well intentioned told me during a flare when I told her how much pain I was in (which for my own sake I don’t often divulge). 

Until recently, I didn’t miss work and I don’t complain. Yes, I did look fine when I was fine (which was often). Flares would go underground for weeks to months, even years, at a time. But I also looked fine when I wasn’t fine.

April 2, 2021
I am lying in a hospital bed—confused, puffy, and wondering why I have clown feet. Am I in a different room? Where are my legs? Am I tripping? No, just discombobulated. There are people in this room. A nurse. What time is it? Is it over? Where are my legs? I’m on ketamine. Or at least I was for the past four hours as it intravenously dripped into my bloodstream in hopes of reversing chronic pain once and for all. 

Machines are beeping. I am in a hospital bed. Everything feels like a carnival fun house mirror. A nurse says something like, “Hey hun…”  She is fuzzy and nice. I am warm. This will be the first day of the rest of my life.

Sixteen days after an FDA-approved ketamine treatment for chronic pain, I am in the heat of another flare up. My spine is being squeezed with might and fury while simultaneously being jammed into my occipital. Someone lit a match to my muscles; I think it was the devil himself. My jaw is locked along with all the muscles of my face—I had no idea I had so many muscles in my face. Searing pain collides with my temples. Ketamine shmetamine.

“It is not always the tears that measure the pain. Sometimes it is the smiles we fake.”

– Jane Lourd

The two-day ketamine infusion treatment costing $2,400 and totaling 1200 mg of ketamine infused into my bloodstream was the desperate Hail Mary pass of ending this once and for all. Pain makes you do things. Desperate things. The thought of chasing something much less FDA-approved and is currently destroying the lives of family and friends across the great US crossed my mind oh so many times. The flare that ensued after the treatment was the most mentally challenging of my life.

Dr. B. is a gentle, honest, and humble doctor practicing ketamine infusions in New York. He was the kind of doctor who squeezed my toes and said, “You are gonna make it kid,” and you felt like your grandpa was cheering for you. When I called him crying out, “It didn’t work!” he refunded half my money and once again mentioned Lyme disease.

“My spine is being squeezed with might and fury while simultaneously being jammed into my occipital. Someone lit a match to my muscles; I think it was the devil himself. My jaw is locked along with all the muscles of my face—I had no idea I had so many muscles in my face. Searing pain collides with my temples.”

– Katie Liljedahl

He had been mentioning chronic Lyme upon our initial consultation, and I repeatedly told him I had tested negative on four ELISA and Western Blot tests over the past decade. Dr. B. had informed my already ketamine-committed mind that the testing for Lyme is drastically flawed and that these tests do not even test for the equally hellish co-infections that Lyme most often comes with. He had mentioned two labs upon our consultation. I had emailed them to myself as we talked and then dismissed it altogether. Now listening to him once again, I sifted through old emails and found the email reading: Lyme labs, iGeneX.

I googled fibromyalgia and chronic Lyme disease and came across a video where Dr. Rawls tells of his own misdiagnosis of fibromyalgia and the years it took to uncover that it was Lyme. Then he spoke about his symptoms and said, “Then one night I stopped sleeping.” With that I closed my laptop and lay on my bed as if the wind had been knocked out of me.

Lyme disease, you have my full attention.

Thus far I have not mentioned sleep. All I have to say is my story with sleep is better suited to be written by Stephen King. And as of now that is all I care to say about the matter.

“Not until chronic Lyme and its treatment is covered by insurance is the medical community expunged from medical malpractice and disgracing the Hippocratic oath.”

– Katie Liljedahl

Dr. B. gave me the name of a Lyme literate doctor in CT. A week later I forked over $1,700 and watched Dr. S. fill up six vials of my blood to ship out to iGeneX labs in California. 

For three weeks I barely made it through work, downing kratom to hold back the pain and holding my breath for the results. 

On May 12, 2021, my iGeneX came back positive for Lyme and co-infections Bartonella and Rickettsia. I was at work when the results came. I walked into the bathroom, lay on the linoleum floor and cried in utter elation.

Bartonella is hell and rickettsia is no picnic. When it has gone untreated for long periods of time, often people are on antibiotics or other treatment protocols for years. The treatment is complex and multifaceted and—as most of this journey has been—all out of pocket. Yet it is not the life sentence that fibromyalgia is. I had a diagnosis. I had a root cause. I had validation to this nagging feeling that something had hijacked my brain and why I hadn’t been able to walk into a Best Buy since the ‘90s.

“On May 12, 2021, my iGeneX came back positive for Lyme and co-infections Bartonella and Rickettsia. I was at work when the results came. I walked into the bathroom, laid on the linoleum floor and cried in utter elation.”

– Katie Liljedahl

Over the next few weeks, riddled with pain and face down in a pillow, I listened to every audible book available on healing Lyme. Slathered in tiger balm and fending off migraines that felt as if they were sent from a demonic realm, I became well versed in spirochetes, the MTHFR gene, Bartonella, Herxing, detox pathways, mold, Candida, biofilms, and natural remedies. I pieced together what I could of the Buhner Protocol and began.

So, why did I have to become a CSI detective to uncover this? Little did I know that while spirochetes burrowed into my brain for the past decade the medical establishment has been steeped in controversy over every single part of Lyme disease from testing to treatment. Lyme disease, and its equally life wrecking coinfections, could be argued to not just be an epidemic but possibly a pandemic according to Dr. Tania Dempsey in the talk: The Bartonella Epidemic (see resource section). A silent and insidious one at that, in which infected ticks inject bacteria that can literally shapeshift into spirochetes, blobs or cylinders as if in a Tetris game the Devil himself designed enabling them to drill into the tissue of merely any part of the body and then morph back into spherical shapes creating biofilms of pathogens that stealthily go undetected from the immune system all the while scoffing at the ELISA and Western Blot’s pathetic attempts to detect it and mocking the CDC’s archaic diagnostic tools.

“Why did I have to become a CSI detective to uncover this? Little did I know that while spirochetes burrowed into my brain for the past decade the medical establishment has been steeped in controversy over every single part of Lyme disease from testing to treatment. Lyme disease, and its equally life-wrecking coinfections, could be argued to not just be an epidemic but possibly a pandemic.”

– Katie Liljedahl

The IDSA’s 2020 Guidelines for Lyme Disease (which dictate insurance mandates) blatantly ignore the body of peer reviewed medical literature with nine out of the 12 members having associated ties to insurance companies, test manufacturers, and the financial gain in patenting microbes (yes, you can own a microbe) all leading to CDC standards that are as useful as a pet flamingo in the insidious, rampant, and unrecognized epidemic of Lyme disease and its relationship with a multitude of other diseases including autoimmune, MS, ALS, Parkinson’s, and Alzheimer’s. Not until chronic Lyme and its treatment are covered by insurance is the medical community expunged from medical malpractice and disgracing the Hippocratic oath.

But I don’t have the bandwidth to think about the IDSA. I cannot energetically afford it. Self-care has become an act of radical self-preservation. I have been on Buhner’s herbal protocol for a month now and as anyone with chronic Lyme knows the process is far from linear. Out of work, and taking each day, often each moment, at a time. I do not know what lies ahead. I am grieving, celebrating, wondering, orientating, herxing, detoxing, healing—all simultaneously. I am excited, curious, exhausted, angry, validated, heartbroken, often all at the same time. I am many things… But above all I am a #lymewarrior.

With special thanks to Dr. Hinchey of Tao Vitality and above all, my mom.

• Katie Liljedahl