Matt’s Healing Journey: A Lyme Disease Story

Matt asked me, his mom, to write his story because even though he lived it, his memories are sketchy. Between Lyme, pain meds, and all the other medications, the last few years are jumbled and gray. To be honest, I think he doesn’t like to dwell on it, and who can blame him? He’s a seventeen-year-old boy with a new, healthy life to live! He said I could share a poem he wrote for English, and I’ve included it here. I wish every doctor could hear the pain and anguish they can cause, straight from a child’s heart. You might be able to identify with it. His healing journey follows this poem, the cry of his heart.

Always and Never - By Matthew Crouch

I always felt like a top student, like every assignment was too easy, always finished early, and always got asked for help by others..

I never felt like I was doing badly in school, never felt like an assignment was confusing, never finished assignments at the last minute, or needed much help from anyone.

I always felt healthy, always was excited for doctor appointments, always had doctors be fast and decisive, always had helpful doctors, always trusted them, and always had a diagnosis and a plan.

I never had frequent absences or appointments, and I never am excited for them anymore, I never had a doctor give up, or call me a problem patient, I never got nervous that the doctor wouldn’t believe me again, never got any shrugs of uncertainty or uncaring.

I always was ready for school on time, always had a good memory, I always had energy, always woke up early to start a long, fulfilling day, always got over the occasional illness quickly, always had teachers who were happy to see me, always the model student.

I never was tardy, or forgot what I read or even ate every 5 minutes, I was never too exhausted to go somewhere, I was never sick for days, and weeks, and months, and years, and I never thought a teacher would not abide needing extra time or taking a test later.

I always thought school and healthcare were safe, fair, and equal places that kids could trust for comfort and help.
I never knew they’d abandon you, just for being different, and I never knew my never would become my always.

Matt’s Healing Journey

The summer of 2017 was truly amazing. Matt was fourteen years old. His brown hair was bleached silver-white by chlorine and sun, and he had enjoyed an amazing summer with his best competitive swims ever. He was vibrant, happy, energetic, and brilliant. Matt was “that” kid—the one who finished his studies early so he could help his classmates, who took advanced classes, who went to eight swim practices a week. He popped up at 4 AM for practice before school, ran miles in PE, and returned to practice again after school. He slept under an Olympic flag on his wall and an American flag comforter, swaddled in his hopes and dreams.

Matt dreamed of being in the Olympics, and he worked hard to achieve it. By the end of eighth grade, Matt was already faster than his future high school’s 100 yard backstroke record. He medaled at the USA Swimming Far Western Championships and in every event he swam at Junior Olympics, and qualified to swim at USA Western Zone Age Group Championships. He chose to miss his first three days of high school for that meet and was justifiably proud of himself for earning a spot on the regional team to compete against the fastest kids west of the Mississippi River. Afterward, his coach told him they would start preparing to qualify him for USA Open Water Nationals in the spring. Even as Matt tried to tell us nonchalantly, the sparkle in his eyes and lift of his eyebrow gave away his excitement. He was over the moon.

But on August 28th, 2017, Matt came home from school complaining of knee pain. We thought it was just another flare up of Osgood-Schlatters disease, a structural issue that causes inflammation with overuse but subsides with rest. When his knees hadn’t improved a few days later, we took him to the pediatrician, where we discovered he had a low grade fever of 99.9℉. Both his knees were swollen and painful to the touch, and movement hurt.

So began our medical odyssey. His pain increased, and he developed contractures in his knees. My vibrant, ridiculously energetic boy was now skipping laser tag parties, barely getting through his school days, and curled up on the couch in pain. X-rays revealed nothing wrong, and the MRI showed only mild effusions on both knees. Nevertheless, University of California Davis Pediatrics referred Matt to University of California at San Francisco Pediatric Rheumatology.

“A worried mom does better research than the FBI”, right? I started Googling his symptoms obsessively and by mid-September, I began to suspect Lyme Disease when Matt’s pain and inflammation matched classic pediatric Lyme symptoms.

But nobody listened to our concerns. It didn’t matter that we had removed an engorged tick from his neck when he was six years old, and Lyme can lie dormant for years. It didn’t matter that he mowed lawns and cut down high grass every weekend to earn money for travel meets, or that he had spent weekends sitting on lawns at swim meets all over California. It didn’t matter that we’d been camping in areas with Lyme warnings on the Sonoma Coast and in the Sierra Nevadas. None of it mattered. They dismissed my concern. Matt’s symptoms were extreme but didn’t fit juvenile arthritis. When blood tests didn’t support arthritis, the UCSF rheumatologist still claimed there was no Lyme in California.

Matt had not given up on his dreams, despite the pain. He continued to swim full workouts, miles at a time, with only his upper body. His tenacity, his competitive drive, and his determination that he wouldn’t lose his sport kept him going.

By the  time a sports medicine doctor saw him, Matt was miserable. His gait had been affected by foot drop, the inability to raise his toes due to weakness. The UCD physical medicine and rehabilitation specialist who was covering for sports med that day found muscle weakness and spasticity and dropped a diagnostic nuclear bomb on us: Hereditary Spastic Paraparesis/Parapalegia, a degenerative, rare, genetic, upper motor neuron disease.

We left with a referral to pediatric neurology, and on the way home Matt asked cautiously, “What does degenerative mean?” I told him as gently as possible, and silent tears fell down his cheeks for a few minutes. Then, he wiped them away and asked how he could get certified as a para-athlete and start training for the Paralympics.

By November, less than three full months since the first known symptom, our sweet boy had deteriorated from endurance athlete to wheelchair and was still declining, with symptoms piling up. A UCD pediatric neurologist examined Matt and ordered more MRIs, bloodwork, and an EMG to test his nerves. Of course, the MRI showed nothing but a synovial cyst at L4-L5—which wouldn’t cause these symptoms—and his blood work was clean. The EMG showed some issues with nerve function in his lower right leg, which explained the foot drop, and the neurologist agreed Hereditary Spastic Parapalegia was the likely diagnosis.

The problem was that HSP is a rare disease and didn’t run on either side of the family. He’d have to be a first generation mutation, which was even more rare. It would’ve been like finding a specific grain of sand on the beach.

We asked about Lyme again. In Europe, Lyme had been misdiagnosed as HSP and other upper motor neuron diseases, so I brought those studies to the doctors. We were met with dismissive arrogance disguised as comforting a distraught parent. “Europe has different strains of Lyme,” “American strains of Lyme don’t do that,” and my personal favorite, “I was trained on the East Coast, so I would recognize Lyme.” We pressed the doctor until he promised to test for Lyme, but he never followed through. We were referred for genetic testing and to the PM&R clinic for even more testing.

My husband and I cried quietly in bed that night, mourning for our son’s normal, healthy life and for all the should have beens that now whispered never will. I cried out to God, alone in my car on my commutes to and from work. I didn’t just yell at God, I screamed at Him. But Matt? He just processed it. He wanted to swim. “So, what’s next?” and “How do we manage the pain, Mom?” He was prescribed muscle relaxers, nerve pain medication, and ibuprofen. It wasn’t great, but it helped a little.

During his December appointment, Matt complained of having chest pain and tachycardia, so PM&R wanted him to be assessed by a pulmonologist and a cardiologist, but a new bomb dropped. Our insurance was no longer going to contract with UCD, so we needed to find a new primary care and new specialists. We were terrified to change doctors in the middle of this nightmare, but it was the best blessing ever. Why? Because in the new doctor’s office, the nurse practitioner listened. She read my notes and the studies we gave her. In January, she signed off on the lab orders for IGeneX...just a signature. She let us decide how much testing we really wanted to do, so we laid out a credit card and did ALL the things. Everything.

In the meantime, Matt was granted a permanent disabled parking pass by the DMV and accepted by Shriners to help monitor the supposed upper motor neuron disease. He was measured for a specialized foot brace which helped with foot drop, and referred to California Children’s Services for free physical therapy and monitoring. Next came the fitting for a fancy new custom, ultra-light wheelchair with power assist. His new wheels gave him back a modicum of freedom and he was back to leaving Mom and Dad in the dust. His friends were amazing, commenting, “sweet ride,” and “It’s almost like you got a car!” During therapy, the CCS physical therapist asked Matt what his primary goals were, expecting him to say he wanted to walk. He looked her dead in the eye and said, “I just want to swim. Get me strong enough to be back in the pool and on my team. Help me get classified as a para-athlete. I’m going to the Paralympics.”

February was a different kind of hard. The first labs came back from iGeneX. He tested positive for Babesia and Tick Borne Relapsing Fever. Finally, an answer that made some sense! The same day, we got the results from genetic testing—NEGATIVE! We felt vindicated.

When the pediatric neurologist called to discuss the genetic test results, I told him that we’d received partial results that he was positive for tick borne diseases. I can’t explain fully how much I enjoyed the silence on the other end of the phone, or how I wished he could see my own condescending smile, but if you’ve been the patient or the parent of the patient, you get it. It was liberating.

But that elation was short lived. Matt continued to deteriorate quickly while we searched for a Lyme Literate Medical Doctor. A cardiologist confirmed tachycardia and found evidence of PVCs on an echocardiogram. Although he agreed that Lyme could cause these symptoms, he had seen someone with HSP and was perplexed by that diagnosis. The cardiologist referred us to a doctor he called the “Dr. House” of pediatric neurology.

He was right. While the pediatric neurologist didn’t have a great bedside manner, he was thorough. We were not surprised when he didn’t understand how the UCD PM&R doctor and neurologist diagnosed HSP. He ordered more MRI’s and nerve density testing and agreed that Lyme could explain Matt’s ever-increasing symptoms and difficulty to diagnose. However, he also said he was unequipped to treat it correctly and suggested we skip the mainstream people and find a private practice experienced with Lyme. We were on the right track, but it takes time to find an available Lyme Literate Medical Doctor (LLMD).

While we were looking for another route, we took Matt to an immunologist whose snarky response, upon reading the test results (which included positives for c pneumoniae and m pneumonia with leukopenia) was, “What do you want me to do about it?”

We went home and continued to research LLMDs, but things took a turn for the worse. My daughter called me at work. Matt’s oxygen levels had fallen, and he was having trouble breathing. He couldn’t walk at all because of the excruciating pain. When the EMTs arrived, his heart rate and blood pressure were outrageously high, they transported him by ambulance to the hospital where he was admitted to the pediatric department. Sutter requested an infectious disease doctor and got Matt’s pain under control. The new neurologist ordered a sedated MRI of his brain and spine and found some small white matter spots indicative of neuro-Lyme, but not motor neuron disease.

We waited for days for the ID doc to show up, and they imported him from—of all places—UCD. The man did not believe the iGeneX tests. He wanted his own lab tests and insisted a simple ELISA and Western Blot would suffice. Statistics show those tests to be inaccurate, but he just refused to accept it.

And even in the hospital, Matt developed more symptoms: hand tremors, slurred speech, muscle fasciculations, and clonus, which is a type of neurological condition that results in uncontrollable shaking movements . One resident decided the symptoms were just too weird and suggested that yoga and counseling might help resolve these issues. I lost my mind on him. I told the nurses, and they were appalled. His attending physician banned him from the room, but he decided to return and reiterate his opinion.

We had another confrontation with the ID doctor, who disbelieved it was a tick borne disease. We badgered him into writing prescriptions for doxycycline, azithromycin, and atovaquone, and he sent us home with a fat bottle of norco to numb the pain. Evidently, giving a kid massive amounts of an addictive narcotic was more palatable to this doctor than admitting that he didn’t have the experience with Lyme to treat it effectively. Matt was still on the baclofen and amitriptyline too. The frightening cocktail of drugs made his pain more tolerable, but it didn’t go away..

Although we found a local LLMD, he said Matt’s case was too complex for him--in front of my fourteen year old. However, he referred us to Pacific Frontier Medical Group where we got in quickly and finally had the confirmation that yes, Matt has a positive, test-based diagnosis of babesia and tick borne relapsing fever, and a clinical diagnosis of Lyme. This amazingly kind Lyme Literate Naturopathic Doctor listened to his story and validated everything he’d experienced. She had seen and heard it before. She communicated with his cooperative primary care, and we had PICC lines, IV antibiotics, and home nurses...all covered by insurance. While we were still out of network and out of pocket for the LLND visits and herbal therapies, the IV antibiotics and everything related to them were covered.

He went out on “home and hospital school,” an  independent study program for kids who are too sick to attend school. I took family and medical leave from my job as an elementary teacher to be with him, to manage his daily IVs, and teach him, since the high school provided work but no lessons. When I ran out of leave, Dad took over, and when Dad couldn’t be there, his older sister was there.

Matt turned fifteen that spring, and his sweet friends threw him a surprise party. He made progress. It was slow, but it was progress. He finished the school year, and by midsummer he felt well enough to start swimming again, and we went camping. He was walking, and Shriners released him from care. In August, he walked to his first day of school and even went rock climbing for several hours.

Matt had a 504 plan at school to accommodate the lingering brain fog, word recall issues, and handwriting issues. He was on oral antibiotics still, but he did well—until the antibiotics were stopped in September.

Exactly seven days after stopping antibiotics, and two days before his first swim meet, the pain came roaring back. We called his LLND and primary care doctor in a panic, and they ordered shots of doxycycline.  Despite the pain, he was determined to go to the meet, so we traveled up to Tahoe, but when it was time to get in the warm-up pool, he just couldn’t. Even with Norco. We went back to the condo we had rented for the weekend and snuggled by the fire, watching movies and trying to salvage what was left of the weekend. We called the LLND and he started with treatment again on Monday.

Another PICC line was inserted, IV antibiotic protocols for persister cells were put in place, and he went back on home and hospital school for the rest of his sophomore year. Still no high school swim season— robbed of the opportunity to break that backstroke record he’d been after, again. Robbed of his school friends, again.

The out-of-pocket visits grew financially overwhelming, so during his sophomore year, we tried to see an ID specialist again. That was a bad call.

When the doctor sent Matt to UCSF, we brought those positive results and proof of improvements on antibiotics. Still, the doctor was defiant. He needs to go back to neurology. This isn’t Lyme. That Lyme doctor is a quack. The all-time worst comment from a doctor to my teenage son was made by this UCSF doctor: “The progress you think you made on antibiotics is a placebo effect. It’s all in your head.” Then, she had the temerity to suggest counseling.

On the car ride home, my sweet boy--the most resilient, cooperative, and respectful, teenage boy you’ve ever met--told me, “I just wanted to flip her off,” and  melted into a puddle of tears. “Why won’t the doctors help me, Mom?”

Why won't they help? His question pierced me, and I barely held it together. I think it is important to lead by example, so I don’t swear, but I would have let him give that doctor the finger. I would have high fived him and taken him for a treat afterward. A seriously un-Christian lack of forgiveness and the desire for vengeance flooded me. I wished Lyme upon this woman--that she would go through at least as much as Matt had been through. To this day, I struggle with forgiving a list of doctors for hurting my sweet boy.

Matt continued even more antibiotics for bacteria that persisted after typical first line treatments. He seemed to have an allergic reaction to one: his chest tightened, and he had trouble keeping his oxygen saturation up. We went to the Mercy ER, where two nebulizer treatments and steroids failed to raise his saturation level. They wanted to transfer him to UCD Medical Center. We begged them to send him anywhere else. We’d drive him to Stanford, over two hours away, or anywhere else. But UCDMC was the only place that would take him, so he was transferred by ambulance with the expectation that he would be directly admitted to get his breathing under control. But instead of admitting him, UCDMC redirected him to the ER, where the reaction started to suddenly subside. Another doctor with an attitude told us, “You need to be willing to accept that he has something other than Lyme.”

To make matters worse, the previous ER had not correctly copied Matt's medical records to the CD they sent with the paramedics, so we had nothing to prove his oxygen levels had been in the low 80s, or how doctors and respiratory therapists had tried to resolve it. UCD’s response? “He was doing it to himself by hyperventilating.” They discharged him with no rescue inhaler and sent us home, our faith in the medical system even more damaged than it had before.

Fortunately, Matt’s primary care doctor and LLND continued to advocate for him. His white counts started to drop and stay low, making his lab work look like he was on chemo.

He finished his sophomore year on home and hospital school again, and his sixteenth birthday passed without company because he wasn’t feeling well. Lyme—and possibly the treatment itself—had decimated his immune system. Matt had low total serum iGg and low subclass 3 iGg. The low numbers qualified him for insurance-covered IVIG therapy, which is no small feat. We stopped antibiotic therapy when it worsened his white counts and started a new off-label drug called Disulfiram. Some case studies indicated that it helped put people with neuro-Lyme into remission, and it had been on the market as a safe treatment for alcoholism. Something in the mechanism that makes people sick if they consume alcohol also breaks down Lyme in all its forms, including the ever-elusive biofilm.

Disulfiram was not an easy fix. Its potential side effects included brain-fog, headache, nausea, fatigue, and neuropathy—the very things a Lyme patient fights—plus it requires labs every two weeks to monitor liver enzymes. Matt had all of those issues, minus the liver problems, at various points, but he faced  it like an endurance athlete. He started the medicine in the summer between his sophomore and junior year, and by August, he had improved enough to return to school.

 Although he still used his wheelchair  when pain and fatigue grew to be too much, he was capable of walking with a normal gait. He missed days here and there when he was having a bad day, but he made it through an entire semester, and even started a heavily modified swim practice with his club team. His entire practice was only a fraction of what used to be his warm-up, but he was in the pool and smiling.

Disulfiram woke up all the things that were hiding as it worked through all the layers Lyme hides under, and we started to see a pattern. A symptom flared for a few days to a week, then disappeared. It was truly amazing to watch those symptoms disappear in reverse order of how they showed up. Matt was becoming Matt again. He was starting to spend more time walking, and he built up his endurance in the pool.

When February rolled around, he started practicing with his high school team. His first meet came, and we choked back tears when he stood up on the blocks in his team suit, ready to go to war for his varsity teammates. The kid looked like he’d never missed a practice and even posted a lifetime best in the 50 yard freestyle! He placed top three in both of his individual events, and his relay team won. Matt smiled ear to ear, lingering and chatting with the guys, one of the group again.

He got two meets in and placed top three every time before COVID shut down school and sports. Something about that seemed extra unfair given the last few years of struggles, but he took it like a champ. While everybody else complained about distance learning, he laughed. He’d already done that for two years and knew how it worked. Matt turned seventeen in quarantine. It crushed him to be out of the water again, but we eventually found a private indoor pool that allowed for socially distanced lap swimming and went there to lift his spirits.

Matt is now completely off of all the prescription pain meds. He remains on IVIG every three weeks, but his doctors are hopeful that his own immune system will eventually recover. Matt has been released by California Children’s Services because they found no neurological symptoms during his annual review appointment, and he’s been off the disulfiram for a few months with no regression. He’s currently doing the Rawl’s Restore program because his LLND thinks it might help with restoring his system after all the heavy antibiotics and medications he’s taken over the last two years. Matt’s energy and stamina continue to improve. He just stood up as a groomsman for his sister at her COVID micro-wedding and even helped with the photography. He’s reveling in his return to six day a week swim practices, and already has his sights set on earning a return to his swim club’s national travel team. Matt even took lifeguard training this summer and got his first job as a lifeguard. He prefers working at the pool near our home because he likes walking to work, and we think he savors his walks, just because he can.

Matt at his sisters wedding.

Throughout all of this, he’s maintained above a 4.0 and just started his senior year of high school with sixteen college units completed. He is happy for school to occupy his time, though on distance learning again, and he attended his “senior sunrise”; an event officially cancelled by the school, but revived as a bootleg, parent-sponsored event. We let him go because he has lost too many milestone moments already, and we weren’t going to let COVID steal another one. He’ll tackle calculus and music appreciation through dual enrollment with the junior college, and he is taking AP computer science, engineering, and professional photography through his high school. The wheelchair sits empty, gathering dust, a menacing specter of days past. Forearm crutches and the leg brace are long abandoned and ready for donation back to Shriners for some other child who needs them. Matt’s now focused on achieving the ultimate mobility: a driver’s license.

Life feels normal, and as I say that, I hold my breath because it is hard to trust that it will stay this way. Saying it feels like I’m jinxing it in the same way ER nurses hate the word “quiet”. But he smiles, and life is good. Through quarantine, protests, murder hornets, toilet paper shortages, inflation, and whatever other twist 2020 throws this year, Matt is healthy and happy, and THAT is everything.