Crossing The Chasm - Does Neuroplasticity Play A Role In Healing
Soulful Sunday #5: February 12, 2023
Science was never my forte, but years ago, I began a journey to uncover the answers to a mysterious disease.
I’ve written about my trip down the rabbit hole, following every clue in an attempt to uncover the cause of my illness. But it was a different event that led to my research of neuroplasticity and its role in healing.
While learning to live with my chronic illness, an unexpected event occurred that would further change my life.
In May of 2017, when my son was eleven years old, he began experiencing frightening neurological symptoms out of the blue. At the time, he was an active, athletic, happy child who did well in school and had many friends. Seemingly overnight, he began to lose his ability to walk across a room, read a book, or write his name. Within a month, I was in an ambulance with him headed to the local children’s hospital. I’ll never forget that evening and the fear on his face. I tried to make him laugh while my thoughts raced about the sudden turns of events. What was happening?
Little did I know that what began that day would lead us on a six-year journey through hell and back.
Would Science Hold The Answers?
After eight hours in the emergency room with physicians who were not only unsympathetic but accusatory, I felt I had entered an alternate reality. I was questioned about my son’s level of stress (he was 11), how long I had been divorced (7 years), and if he had any emotional issues (he did not).
Despite my many requests and demands, it became apparent that no testing would be done. Instead, we were left in a room where he could be ‘observed.’ He was discharged at 2:00 AM after the doctor who had been observing him suggested I was unaware of an issue he was having at school. I had all I could do to restrain myself from reaching across the desk. I’m not violent, but boy, did I want to punch someone that night.
Writing about this is still difficult. But it’s not the point of this piece today. I provide this as background because it’s relevant to understand in context.
“Into the forest I go to lose my mind and find my soul”
– John Muir
Following that first visit to the hospital, we embarked on an 18-month journey through New England and New York, traveling hundreds of miles to see dozens of specialists while his symptoms worsened by the day. A three-day hospital stay in Boston a month later resulted in more questions than answers and a prescription for physical and occupational therapy.
I was quickly taken back to my experience twenty years earlier. I knew what was next. The girl who loved writing and telling stories and hated biology and chemistry needed to figure it out. I would take what I had learned in my search for answers to my illness and apply it to yet another mysterious case.
My Crash Course In Neuroscience
Through a series of unlikely connections, I met a functional neurological chiropractor who was helping patients with Traumatic Brain Injuries (TBI) regain function utilizing a variety of alternative therapies. He didn’t have answers about the cause of my son’s illness, but he was willing to help and helped many patients overcome neurological symptoms after a TBI.
The non-invasive, atypical therapies were so far from mainstream medicine that I wondered if I had strayed too far off course. My physician father was supportive but understandably skeptical at first. But with few options, we had to try something. For months, my son worked with him several times a week to calm the nervous system, even following a concussion protocol. After a few months, the improvements were significant. I couldn’t argue with the results, but slowly the symptoms crept back.
The clinician couldn’t explain why the illness began or what was causing it, but I hypothesized that we had slowed the progression of neurological changes through the nervous system. Had we stopped specific networks from misfiring? I didn’t have the answers, but the progress was enough to regain hope, and we definitely needed more of that.
I accepted the small win and continued my research.
What Is Neuroplasticity
“Neuroplasticity, also known as neural plasticity or brain plasticity, is a process that involves adaptive structural and functional changes to the brain. A good definition is the ability of the nervous system to change its activity in response to intrinsic or extrinsic stimuli by reorganizing its structure, functions, or connections.”
-Puderbaugh M, Emmady PD. Neuroplasticity. 2022 May 8. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan–. PMID: 32491743.
Neuroplasticity is when the brain is rewired to function in a different way.
Through the various therapies used by the chiropractor, I saw the benefits of neuroplasticity and the effect of calming the nervous system. Still, I couldn’t tell you why it worked, how it worked, and why the improvement didn’t last. First viewed as a failure in approach, I would later understand why the changes were only temporary.
Crossing The Chasm
I knew with absolute certainty that my son was not suffering from a psychological issue. I also knew that the multiple seizures a day were not caused by stress, but most of the literature on seizures left questions about the cause of seizures. I also learned that the prescribed physical and occupational therapy my son faithfully did for months was worsening his condition. The therapists agreed, and we stopped.
The search for answers next led to a young neurologist in New York who specialized in neuroinfectious and neuroimmunological diseases.
My son was too ill to travel, so I first had a phone conversation with her. In advance, I had compiled an extensive summary of the onset of his illness, his symptoms, the progression, who we had seen, what they had done/NOT done, what worked with the functional chiropractor, what happened with PT/OT, etc.
She wasted no time ordering a battery of tests, including obscure blood tests that were done in labs and clinics all over the country as well as an MRI. For the first time in 18 months, someone was taking his illness seriously!
As soon as the results were ready, we headed to NY to meet her in person. By this time, my son was in a wheelchair, having dozens of seizures a day and numerous other disabling symptoms. He was losing his vision and could no longer write his name legibly. He had not been to school in 15 months. In fact, for 18 months, we only left the house for medical appointments.
We sat in her small, bright office, hoping for answers but not wanting to be disappointed. My son, who has a keen intuition and the ability to quickly read a room, would tell me within five minutes of meeting a new physician whether they would help or not. He was right every time. This time we didn’t need to wait five minutes.
She wasted no time and was direct. “I know what is wrong.” She looked directly at my son, “You’re suffering from Systemic Bartonellosis, Babesia, Lyme, and Autoimmune Encephalitis. I need to do more tests to rule out some other things. We need to start treatment today. I know you’ll have questions.”
For the first time in nearly two years, I felt able to breathe. Then I thought, what did she say?
I didn’t know what Systemic Bartonellosis was. I also didn’t know the complexity of his diagnosis, the damage done by the previous 20+ doctors who ignored his symptoms and insisted they were psychological, what treatment would entail, and how long it would take.
More importantly, I wondered if he would ever be the same.
The following day we returned to her office for more testing. He was then diagnosed with a rare neurological autoimmune disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). It is a progressive disease that affects the peripheral nervous system and requires monthly intravenous therapy.
We had crossed a chasm into the unknown.
My son started treatment for multiple bacterial infections after the first appointment. He would continue treatment for the next six years.
With a clear diagnosis, I was anxious to dig into the research. I was quickly disappointed when I learned there was little research and more contradictions.
I also found a medical system that denied the existence of chronic, persistent, vector-borne infections despite physical evidence, an insurance company that refused to pay for ongoing treatment, and questioning looks from anyone that asked how he was doing.
I didn’t have time to fight a losing battle, so I focused on what I could do instead.
Neuroplasticity And Healing
Because my son’s brain had been under attack for nearly two years, I clung to the idea of neuroplasticity and the ability of the brain to heal. I continued to explore therapeutic tools that could be utilized during treatment, including vagus nerve stimulation, neural retraining, meditation, breathwork, music therapy, and more. The neurologist was open to alternative therapies, although it wasn’t her forte. We saw her every month for the first year, adding new treatments and therapies along the way. A year later, we added another experienced physician in New York who utilized alternative therapies in addition to traditional treatments.
A neurological optometrist was added to the care team in the second year, a leading specialist who had developed a protocol to rewire the neural connections that had affected my son’s vision. He was knowledgeable about Systemic Bartonellosis and Lyme disease and their dramatic effects on one’s vision. That alone was surprising as few in the medical field have heard of Systemic Bartonellosis.
Despite finally having answers and a best-in-class team of clinicians, no one could tell us how long treatment would take, what would work, and what wouldn’t. Much of what we tried was trial and error because when infections cross the blood/brain barrier and embed themselves throughout the body, the effects vary widely from person to person. Protocols changed frequently, and a combination of treatments was always in play.
When I spoke to the chiropractor sometime later and told him of the diagnosis, he explained why the therapy was only temporary. He explained that his work had been a band-aid, given the active infections that continued to affect the brain’s network. It made sense and restored my faith in neuroplasticity if we could tackle the infectious cause.
Neural Networks-Connecting The Dots
During my research, I learned that, like our brain, our nervous system is also ‘plastic.’ Sensory pathways are integrated within the nervous system and help us interpret our environment. Like regulating emotions, the ability to process sensory input determines the ability to think and learn.
Sensory pathways can become more flexible and better at processing information with specific input, such as vagus nerve stimulation. I knew vagus nerve stimulation was used in various clinical applications and studied across multiple disciplines.
I had read a 2009 article in Brain a Journal of Neurology, “Harnessing neuroplasticity for clinical applications,” which was the result of a workshop sponsored by the National Institutes of Health Blueprint for Neuroscience Research and brought together twenty-seven leading scientists to understand and promote opportunities for the translation of neuroplasticity and circuit retraining research into effective clinical therapies.
Experts in neurotrauma and stroke, mental and addictive disorders, pediatric and developmental disorders, and neurodegeneration and aging identified examples of human neuroplasticity in these conditions.
The review article concluded:
“Neuroplasticity plays a significant functional and ameliorative role across a wide spectrum of brain diseases as well as in normal ageing and health. Measures of plasticity can provide insights into disease pathogenesis, improve treatment strategies and help identify substrates of treatment effects. This report describes a number of principles of neuroplasticity common across several forms of CNS disease. Many forms of neuroplasticity can be ongoing in parallel.”
At the time, this gave me hope, although there were so many unanswered questions and unknowns.
…..Look for Part Two of Crossing the Chasm in next week’s edition of Soulful Sunday.
Master Your Monday
A mindful tip to help you start the week.
Attract what you want by being who you want.
We have the power to change who we are and how we want to live our lives. That includes the people in our lives. Surround yourself with people that encourage you, support you, and bring out the best in you. In turn, you’ll add to their life and grow in ways you never imagined.
A Vision For You
This week I’m thrilled to share the launch of a friend’s book, a guided journal called “Love Vision Clarity: Define the vision to manifest your partner and cocreate your dream relationship” by Kat Nieh.
I had the pleasure of reading an early-release version. It’s a beautiful addition to a mindful way of living. Whether single or in a relationship, “Love Vision Clarity” will help you enhance your relationships. Kat brings her energy and light to the process and asks you to consider your vision for an ideal relationship. The prompts are thought-provoking and inspire the reader to consider what’s important.
As Kat says:
"We are not meant to be alone. Our relationships are one of the most valuable resources we have. Your romantic relationship has a massive influence on who you are, who you become, and how you experience your daily life. So choosing the right person to spend your life with is essential.
Yours is unique to you. No one else can define or identify any of this but you. This guided journal will help you discover and create a clear vision and detailed blueprint of your ideal partner and dream relationship.
What you want is possible, it just requires some work to get there. “Love Vision Clarity” will not only show you how but also simplify the process for you, too.”
Kat Nieh is a dating clarity coach who empowers singles to manifest who and what they want in a relationship. Discover more of her content on loving consciously + living intentionally @thoughtfullykat (Twitter, Instagram, Substack, or Medium) or www.thoughtfullykat.com. “Love, Vision, Clarity” is now available.
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