This is a story about our youngest son’s fight with Lyme disease - a disease transmitted by a tick bite.
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It’s a story about a boy who went from being healthy, crazy active and rambunctious to critically ill in just 6 weeks. It’s a story about a medical system that has failed to get on board with diagnosing and treating this rapidly spreading infectious disease that is a threat to the health of all Canadians.
The travesty of Lyme is that if it is detected, treated early and appropriately, it can be cured. However, if it's left undiagnosed and untreated it can become an incurable chronic illness that wreaks havoc on every system of the body - making it difficult to treat. Lyme disease can attack the joints, brain, nervous system and organs. It can be fatal. And there is a huge lack of awareness in the medical community about it and a systemic bias against diagnosing and treating. This lack of awareness and ignorance nearly cost our son his life.
This is Sparky's fight.
Parker was born in 1999. His sweet, sunny disposition and winning grin won our hearts – and earned him the nickname Sparky. A good ol’ Canadian boy who loves sports - but basketball is his passion. A pint-size shooting wonder with crazy mad skills. His coaches called him Mr. Hustle.
IT BEGINS...
September 2009
He was excited to start school. Grade 5! He came home from his first day of school feeling sick. He said he was tired and it hurt to breathe. His deterioration was swift. Within 6 weeks he had developed joint pain and fatigue so severe that he was often confined to a wheelchair.
He was excited to start school. Grade 5! He came home from his first day of school feeling sick. He said he was tired and it hurt to breathe. His deterioration was swift. Within 6 weeks he had developed joint pain and fatigue so severe that he was often confined to a wheelchair.
THE DESCENT
That was just the beginning.... Over the next 5 months he got progressively sicker. New symptoms developed and ravaged his body. Weight loss – (15lbs in 3 weeks). Extreme fatigue. Sensitivity to light and sound. Chest pain and heart palpitations. Migraines, tremors, body heat dis-regulation, air hunger and shortness of breath. Cognitive dysfunction. Swelling and rashes. His pain would become so severe it warranted many trips to the ER for IV narcotics. Albeit, they barely took the edge off.
In the meantime, we began seeing specialists. Several hospitalizations multitude of tests, a plethora of possible diagnosis considered - leukemia, lymphoma, rheumatological and autoimmune diseases. Tests came back normal. Everyone was baffled, but no answers to what ailed our little guy.
What was so radically altering his life?
In January 2010, the tremors in his limbs began. Every day they came and would last 4 hours at a time. Back to the hospital. Doctors were determined to get to the bottom of this and kept him in hospital for nearly a week. But all test results came back "normal"....or so we were told...
A MISDIAGNOSIS
He was released from hospital with a diagnosis of Idiopathic Pain Syndrome & Movement Disorder. The treatment plan included physiotherapy, pain management psychology and antidepressants. He did not improve at all. In fact, by the end of the month, he was unable to walk, crawl, feed or clothe himself. He had bouts of psychosis, hallucinations, delirium, rages and pain, always the searing, unrelenting pain. I (Sparky's dad) took time off work to be with him. We wouldn’t dare leave him alone.
What on earth was happening?
This wasn’t the boy who once tore around the house laughing and playing. His spark was gone. He was a vacant eyed, pain riddled shell of his former self. It ripped out our hearts. There were many sleepless nights.
He lost his spark.
Leave no stone unturned.
We began to question the Idiopathic diagnosis. Given that Idiopathic means unknown cause, we weren’t willing to just lie down and accept this. Our son was wasting away before our eyes. We were determined to leave no stone unturned in our quest to uncover the mysterious illness that was systematically stripping him of his abilities. We requested copies of all his medical records and began to research.
Interestingly, his chart revealed a positive test for an infection often associated with Lyme disease. This was news to us. We had been told by the infectious disease doctors in the hospital that there was no evidence of infection. Maybe it had been missed. We questioned several doctors about this and shared with them that we found that Sparky had 60/75 symptoms on the clinical diagnostic checklist for Lyme.
The response?
“British Columbia is not endemic for Lyme.”
We thought that very odd.
Another doctor categorically dismissed Lyme - shouting that
“It is impossible to get Lyme disease in BC”.
Those seemed like pretty hostile responses to a simple question. And confusing. The BC Center for Disease Control lists British Columbia as endemic for Lyme. But we weren’t surprised by their response. We were learning that there is profound ignorance and lack of experience in the medical community with respect to Lyme disease. In fact, the ELISA test they use to screen for Lyme in Canada is accurate less than half of the time. It was no surprise then when Sparky's test came back negative.
Another test, called Western Blot, is more accurate and available in Canada but doctors refused to test him with it. We were told it was "too expensive and time consuming". In their mind, Lyme was out. Their heels were dug in.
We felt abandoned by our medical system.
Sparky was so ill we feared we would lose him. We knew we were running out of time and we realized it was a waste of time trying to sort out a diagnosis for our son in our own medical system. Shortly after this realization, we took Sparky to San Francisco, CA to be evaluated by a leading expert on tick borne illnesses (TBI). DR H is a board certified, licensed specialist and has treated over 2,000 patients with TBIs.
THE RIGHT DIAGNOSIS
DR H gave Sparky a full exam and laid out all the puzzling medical pieces and together they formed a clear picture of Lyme, Babesia and Mycoplasma. To help confirm the diagnosis he ordered the more accurate Western Blot Blood Test that had been denied to us in Canada. Sparky’s blood came back positive.
By the time he was seen by Dr H, he was an emaciated shell of his former vibrant self. He could no longer walk, feed or clothe himself. His infections were deeply entrenched and life-threatening. Dr. H immediately began an aggressive treatment protocol. He told us that we were in for a long and brutal fight.
THE ABANDONMENT
With his lab-confirmed diagnosis and treatment plan in hand, we returned to Canada with high hopes that Canadian doctors would partner with Dr. H to provide treatment. This did NOT happen. Rather, BCCH doctors harshly critized his diagnosis, scoffed at his positive blood test for Lyme and flat out refused to work with Dr H - despite his repeated requests asking for such.
Sparky was abandoned by our health care system.
THE COST OF IGNORANCE
The ignorance of Lyme in BC resulted in a failure of the health care system to recognize and diagnose Sparky in a timely manner. THis nearly cost him his life - and resulted in an entrenched infection that was no longer considered curable. His best shot at recovery was to knock the infection into remission with long courses of both oral and IV antibiotics and boost his immune system to help keep him in remission.
The systemic bias against the long term antibiotic treatment of Lyme has nearly cost us everything in all areas - physically, emotionally and financially. Since December 2009, his medical treatment has been under the care of two American LLMDS (Dr H & Dr D) and paid for out-of-pocket by us. This has meant countless phone appointments, flying to Cali to see Dr H every 3 months and visits to his other doctor in Seattle, WA in between.
THE VALLEY OF THE SHADOW
December 2009 to October 2013
It has been said that fighting Lyme is a marathon battle of one step forward and two steps back. This was very much the case for Parker. The years of treatment that followed his diagnosis were a marathon of debilitating fatigue, unremitting joint pain, cognitive decline, hallucinations, seizure-like tremors, migraines, sound and light sensitivity. Sparky could rarely walk independently and was too ill to go to school or play with friends. His childhood was consumed by daily regimens of IV meds, pills and doctor's appointments.
During this time frame, we often felt like we were living in the valley of the shadow of death and yet, there were glimpses of light that gave us hope that underneath the barrage of symptoms, he was healing.
“Fighting this disease is a battle that makes my brain and my bones hurt, but in the end the bugs will die and I will win.” ~Sparky,12
SIGNS OF LIFE
October 2013 - May 2014
We finally began to see sustained levels of progress. He was able to walk more steadily and with less pain for longer periods of time. His most debilitating neurological and psychiatric symptoms began to resolve. He began intensive physiotherapy to rehabilitate his body. Then came that first epic trip without the aid of his wheelchair. At the time, we had been flying from our home in BC to CA to see Dr H every 3-4 months since December of 2009. In January 2014, Parker made this trip without his wheelchair for the FIRST. TIME. EVER. This was an epic and monumental trip!
REMISSION AND RESTORATION
Summer 2014 - January 2015
It's official - Sparky's Lyme is in remission! He is slowly weaned off of all his medications. He begins the process of re-integrating into life!
In Fall 2015, he returns to school! He was so excited and nervous. The last time he was in school he had been in grade 5 - he was now in grade 10! Talk about a steep learning curve...yet, his transition went remarkably well. He made friends, had sleepovers, hung out and was excited to head to school each day. Well, most of the time - he is 15 after all!
October 2013 - May 2014
We finally began to see sustained levels of progress. He was able to walk more steadily and with less pain for longer periods of time. His most debilitating neurological and psychiatric symptoms began to resolve. He began intensive physiotherapy to rehabilitate his body. Then came that first epic trip without the aid of his wheelchair. At the time, we had been flying from our home in BC to CA to see Dr H every 3-4 months since December of 2009. In January 2014, Parker made this trip without his wheelchair for the FIRST. TIME. EVER. This was an epic and monumental trip!
REMISSION AND RESTORATION
Summer 2014 - January 2015
It's official - Sparky's Lyme is in remission! He is slowly weaned off of all his medications. He begins the process of re-integrating into life!
In Fall 2015, he returns to school! He was so excited and nervous. The last time he was in school he had been in grade 5 - he was now in grade 10! Talk about a steep learning curve...yet, his transition went remarkably well. He made friends, had sleepovers, hung out and was excited to head to school each day. Well, most of the time - he is 15 after all!
He made his high school basketball team! This had been a long held goal of his - playing varsity basketball was a dream he had tightly held on to through his long years of illness. He discovered new interests - like long-boarding and mountain biking. His dad, who has run a mountain bike club in a local high school for 15 years, was ELATED! Sparky proved to be a natural - effortlessly ripping single track on trails all over the lowermainland - Northshore, Whistler and Delta Watershed to name a few. Most of the time, he easily blew past dad and left him to eat his dust.
His recovery was a sight for sore eyes! During this time, just seeing him effortlessly walk into a room still caught us off guard, so the sight of him on a bike or on the basketball court felt completely surreal. It was a miraculous sight to behold!
ON TOP OF THE WORLD
January 2015
At the beginning of January 2015, he went on a 4 day back-packing trip with his class to Tetrahedron Park (near Sechelt, BC). He was one of three students who completed the climb up Mt Steel (summit 5400+ feet).
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| Parker and two classmates on the summit of Mt Steel, Jan 2015 |
He came home pumped and looking healthy and vibrant after his mountaintop experience. Through the long dark years of his illness, we had always held on to the hope that he would recover but never in our wildest dreams had we ever anticipated his recovery would be so full and complete. We were all on top of the world! WE finally felt it was 'safe' to exhale and fully embrace his recovery.
Three days after the trip, he got sick. We hoped it was "just the flu" but as the weeks passed and we once again watched or son deteriorate that hope faded.
RELAPSE
March 2015 to present
"We are stumbling numb through a twilight we dared to believe we'd left behind - how do you even find the words to explain the devastation we feel." ~ sparky's mom (excerpt from her blog post, "Reality of Relapse")
In March 2015, Parker's relapse of LYme and Babesia was officially diagnosed by Dr H. Aggressive antibiotic treatment was started.
Aside from a handful of days since January 2015, he has essentially been housebound - most days it is a struggle just to get from his bed to the couch. He is no longer able to attend school. Visitors are few and very far between. His days are pain filled, long and isolating but he is not one to complain or be bitter. His sweet smile is always accompanied by an upbeat or witty remark and he gives the best hugs. ever. Yet, his grief and loneliness over being cut off from life again and his deep discouragement over being back in a place of great suffering are palpable.
His recent relapse has been a gutting and devastating blow for the entire family. Hopelessness is a pervasive feeling we all struggle with on a daily basis and yet, we solidly believe this - there is a road out of this disease and into remission for every person fighting Lyme. We found Parker's way out once and we hold on to the hope that we will find it again. Healing is possible. There is hope. Always there is hope.
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| This picture of Parker was taken on the beach in Santa Cruz, Ca during a visit to Dr H in January 2014. This was during that first epic trip he ever made there without his wheelchair. This was the day we felt like we were finally seeing Parker emerge from the shadow-lands of Lyme. |
As a family, we firmly believe that in the face of life’s greatest trials, we have a choice to make. We can focus on what Lyme disease has taken away or we can look beyond all that has been lost and find what is to be gained. We will not let it rob us of our dignity, our hope, our faith or our sense of humor!
And this is where we stand today - with our son. Many of you have chosen to stand with us. Standing together is always better than alone. We need your help. There’s no way we can do this alone.
Will you stand with us?
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We desperately hope that Sparky’s fight will one day pave the way for the diagnosis and treatment of Lyme disease in Canada. We hope that his case will spark change and ignite a flame of awareness, compassion, and care that is currently lacking in our system here.
Thank you for reading Sparky’s fight. Thank you to our friends and family for walking this journey with us and persevering in prayer.
Never underestimate the power of prayer.
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Follow our family's journey with lyme: www.ticksandtrust.blogspot.ca
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