“Although abdominal pain is generally not considered a sign of LD [Lyme disease], in this case report we describe a patient with unexplained severe abdominal pain that eventually turned out to be LD due to radiculopathy,” explains Stolk from the Haga Teaching Hospital in the Netherlands. [1]
The 71-year-old woman underwent an exhaustive evaluation to determine the cause of her abdominal pain. Tests included: CT scan of the chest and abdomen; whole body emission tomography-CT scan (PET-CT); colonoscopy; gastroscopy, and an MRI of the small intestines. Initially, doctors did not consider testing for Lyme disease as a cause of the patient’s stomach pain.
The woman was admitted to the hospital for pain management and other diagnostic workups.
Approximately 8 weeks prior to her hospitalization, she experienced temporary lower back pain, myalgia, fever, burning sensations and tenderness on her head and upper legs and moderate stomach pain. Several weeks later, her abdominal pain worsened.
“Going over the history again, she emphasized that she had stayed in a high endemic area for ticks and had suffered a possible tick bite without any sign of erythema migrans,” writes Stolk and colleagues.
Lyme disease associated with stomach pain
Serologic testing and a spinal tap were consistent with Neurologic Lyme disease. The spinal tap revealed an elevated IgM antibody to Borrelia burgdorferi (Bb), a lymphocytic pleocytosis, markedly elevated IgM antibody index to Bb, and markedly elevated IgG antibody to Bb.
The authors point out that “Since the incidence of LD is rising it is important to realize that severe abdominal pain could be the first clinical manifestation of early neuroborreliosis.”
After a 2-week course of intravenous ceftriaxone to treat Lyme disease, the woman’s symptoms, including stomach pain, resolved completely.
This case demonstrates the importance of re-examining a patient’s history when symptoms cannot be explained, the authors point out.
“Instead of doing extensive diagnostic tests, it is important to scrutinize the patient’s medical history in the presence of unexplained clinical signs.”
The authors note: Abdominal pain in the presence of facial paralysis has been described in Europe as Bannwarth Syndrome.
Editor’s note: I often see Lyme disease patients in my practice who present with stomach pain severe enough to warrant extensive diagnostic testing before Lyme disease is suspected.
UPDATED: May 28, 2021
References:
Stolk JM, van Nieuwkoop C, van der Voorn M, van Erp S, van Burgel ND. Ticking off diagnoses of abdominal pain: early neuroborreliosis with radiculopathy. Neth J Med. 2018;76(7):336-338.
PODCAST: SEVERE NEUROPATHIC PAIN DUE TO LYME DISEASE
Hello, and welcome to another Inside Lyme Podcast. I am your host Dr. Daniel Cameron. In this episode, I will be discussing the case of a 36-year-old man with severe neuropathic pain due to Lyme disease.
I first read about this case in the journal Neuromodulation by Karri and colleagues.
A 36-year-old man suffered with a chronic pain syndrome associated with post-treatment Lyme disease syndrome (PTLDS). [1] PTLDS is a complication of Lyme disease. Individuals with PTLDS remain ill with pain, cognitive impairment, and fatigue and find it difficult to function.
The patient described severe neuropathic pain in both feet and categorized the pain at a level 10 out of 10 despite treatment with methadone 5 mg every 4 hours as needed. The doctors assumed that the tick-borne infection had resolved and elected not to treat with antibiotics.
Instead, they treated the patient’s symptoms. The pain remained severe despite trials of gabapentin, duloxetine, bupropion and narcotics. “The patient was unhappy with associated adverse effects, especially drowsiness and recurrent constipation,” the authors wrote. [1]
Surgical treatments for pain due to Lyme disease
Two surgical procedures were performed, which improved the patient’s pain. First, the man had a spinal cord stimulator surgically placed in the Dorsal Root Ganglion to mask the pain signals before they reach the brain. The pain dropped to a level 3 out of 10.
A spinal cord stimulator alone does not come cheap. “The Journal of Neurosurgery: Spine published an article estimating the cost per patient of spinal cord stimulator implantation at $32,882 for Medicare patients and $57,896 for Blue Cross Blue Shield, with annual maintenance reaching $5,071 to $21,390,” wrote Laura Dyrda in Becker’s spine review. [2]
The doctors then surgically placed a pulse generator in the right paraspinal-flank area. The patient reported the pain dropping to level 0-2. Narcotics were rarely needed and the man was able to return to work as a health-care provider.
The authors stressed the need for novel approaches to pain management for patients with pain associated with post-treatment Lyme disease syndrome.
Some of the following questions are addressed in the podcast:
Have you seen severe pain in Lyme disease?
What types of pain have you seen in Lyme disease?
What is the treatment for Lyme disease pain?
What is Post Treatment Lyme disease Syndrome (PTLDS)?
What are the symptoms of PTLDS?
What is controversial about PTLDS?
What are your concerns with a surgical approach to Lyme disease pain?
Would additional antibiotics have helped resolve the Lyme disease pain?
Thanks for listening to another Inside Lyme Podcast. You can read more about these cases in my show notes and on my website @DanielCameronMD.com. As always, it is your likes, comments, reviews, and shares that help spread the word about Lyme disease. Until next time on Inside Lyme.
Please remember that the advice given is general and not intended as specific advice as to any particular patient. If you require specific advice, then please seek that advice from an experienced professional.
Inside Lyme Podcast Series
This Inside Lyme case series will be discussed on my Facebook and made available on podcast and YouTube. As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.
References:
Karri J, Bruel B. Dorsal Root Ganglion Stimulation for Post-Lyme Disease Chronic Peripheral Neuropathic Pain. Neuromodulation. 2020.
5 Findings on Spinal Cord Stimulator Effectiveness for Failed Back Surgery Syndrome in Becker’s Spine,. Written by Laura Dyrda May 29, 2014. Last accesed April 22, 2020.
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**Comment**
I am happy to report that after dealing with pain of a magnitude I never knew existed before, I am PAIN FREE. What got me here? Antibiotics, herbs, blood ozone, and YEARS of treating this monster. I want to offer hope that treatment can rid of you all pain or at least get you to a place you can manage it.
It’s truly unfortunate the ‘authorities’ made the decision that this man’s pain had nothing to do with a persistent infection. The CDC/IDSA is directly behind this bad decision. Antibiotics and other antimicrobials will not cost near as much as this surgical device, which comes with plenty of its own risks, BTW.
I had one experience where the pharmacist did not notify me they gave me 250mg tablets instead of 500mg so I was inadvertently taking half the dosage. My pain shot through the roof. When I finally read the bottle myself and realized the error, within ONE dose, PAIN GONE. This little exercise taught me the importance of the right dosage. Dr. Burrascano discusses this along with other treatment nuances: https://madisonarealymesupportgroup.com/2018/12/28/the-history-of-lyme-disease-dr-burrascano/
Treatment for this takes finesse, savvy and experience. Do not trust mainstream medicine with this or you may find yourself getting needless surgeries to mask something that appropriate treatment could resolve.
Take a moment to consider: How often does your intuition play a role in how you decide to treat your Lyme disease? For instance, maybe you decided not to pursue a certain healing modality despite rave reviews because you felt deep in your belly that it wasn’t right for you. Or, perhaps you were drawn to a particular therapeutic intervention (i.e. herbal therapy, detoxification, a specific healthcare provider) because something seemed “right” about the decision.
Most of us have had these types of “gut feelings” about some aspect of our lives. Although these feelings are attributed to your gut, they’re actually the interaction between your brain and the vagus nerve. The longest and most elaborate cranial nerve in your body, the vagus nerve is a primary pathway by which the sympathetic and parasympathetic nervous systems can be balanced.
People with chronic Lyme disease often report feeling hyper, irritable, and anxious from time to time — evidence of a nervous system that’s shifted into high gear. To cultivate conditions that are more conducive to healing, the overworked nervous system may need to be reset. One way to do this is by stimulating the vagus nerve so that the body can reach a greater state of tranquility.
Here, we’ll examine the vagus nerve, its role in chronic illness, and what you can do to improve its function and restore your health.
Vagus Nerve Basics
There are 12 pairs of cranial nerves in the body. Each originates from the brain and has a specific set of tasks to perform that affect sensory and motor function. Each nerve has a Roman numeral from I through XII assigned to it. The vagus nerve, for example, is the 10th cranial nerve and corresponds to the Roman numeral X.
Vagus is a Latin word that means “wandering,” and indeed, this intricate cranial nerve lives up to its name because it wanders throughout the body. It acts as an information superhighway from your brain, through the neck and thorax, and stops in the abdomen.
While some nerves influence only the senses or only movement, the vagus nerve is unique in that it has an impact on both. The primary functions of the vagus nerve include:
Additionally, the vagus nerve is a crucial component of your parasympathetic nervous system, the relaxing side of the nervous system, which helps bring your body back to a state of calm after a stressful period or event. However, the challenges of living life with Lyme or Lyme coinfections like Babesia and Bartonella can disrupt the communication to and from your vagus nerve, activating your sympathetic nervous system.
“The stress associated with being chronically ill sends the sympathetic nervous system, the part of the nervous system associated with the ‘fight-or-flight’ response, into overdrive,” says Dr. Bill Rawls, Medical Director of RawlsMD and Vital Plan. “Sympathetic overactivity releases stimulating chemicals like norepinephrine and dopamine, which can leave you feeling wired, tired, and anxious.”
The flight-or-fight response is critical when our circumstances demand a high state of alertness. But prolonged periods of stress can hinder sleep, recovery, repair of tissues, and more — the exact opposite of the resting state brought on by the vagus nerve.
“If you feel revved up all the time, you’ve got adrenaline surging through your system, and it makes your system very fragile,” says Dr. Rawls. So how do we best support the function of our parasympathetic nervous system and vagus nerve? The answer lies in the biological process carried out by the vagus nerve called vagal tone.
Vagal Tone and 4 Ways to Bolster It
The concept of vagal tone has seen a recent surge in interest among integrative health and wellness professionals, but some of the first-known research on the subject dates back to the early 1900s. By increasing vagal tone, your body is better equipped to tap into the calming and reparative mechanisms of the parasympathetic nervous system when stress ensues.
Your vagus nerve is involved in many different bodily processes, so it’s essential to understand how to get out of the chronic flight-or-fight mode. Let’s take a closer look at some options.
1. Get a Daily Dose of Cold.
When you think about experiencing cold temperatures, vagus nerve stimulation probably doesn’t come to the forefront of your mind (heavy layers, coats, and thick blankets are more like it). However, research indicates exposure to cold may indeed improve vagal tone.
Upon initial introduction to cold weather, study participants demonstrated an increase in activity of the sympathetic nervous system, as measured by their cardiovascular function. However, once the participants acclimated to the temperature, their parasympathetic activity rose, suggesting that adapting to the cold may balance the response of the vagus nerve.
To get your daily dose of cold and stimulate the vagus nerve, consider alternating 60-second intervals of hot water, directly followed by cold water when taking a shower. Then, repeat the process two or three times. If you need to calm down in a pinch, try splashing some cool water from the sink on your face. The quick rush of cold may be just enough to produce a desired calming result.
2. Improve the Health of Your Microbiome.
“The microbiome is the sum of all the microbes that inhabit the body, including normal flora that typically causes no harm as well as potential disease-causing pathogens,” says Dr. Rawls. “The microbiome is vast and more complex than anyone could have ever imagined.” Though the science of this expansive micro-ecosystem continues to advance, research — like that found in the Journal of Medicinal Food — suggests a sea of possibilities for how the gut and brain interact with one another.
The main mode of communication? It’s the vagus nerve, which gives and receives information from your gut, via a two-way, or bidirectional, throughway called the gut-brain axis. Additionally, the vagus nerve facilitates the production of relaxing chemicals like serotonin and GABA in the brain, slows breathing, reduces heart rate and blood pressure, decreases inflammation, and promotes healing.
Gut bacteria can impact the vagus nerve because the microbes stimulate nerve impulses that send signals to the brain, affecting such functions as sleep, reactivity to stress, cognition, and more. When the gut flora is healthy, there’s a more harmonious relationship among the types of signals being sent along the lengthy cranial nerve. However, the persistent symptoms of Lyme disease can fuel chronic stress, altering your body’s normal microbial load and, along with it, the signals they send.
Additionally, “Stealth microbes that are deeply embedded in tissues generate low-grade inflammation throughout the body and the brain,” says Dr. Rawls. The shift in the body’s terrain may trigger an overproduction of excitatory chemicals like adrenaline, norephinepherine, and dopamine.
But there is hope to strengthen the microbiome and improve communication through the vagus nerve. Dr. Rawls suggests herbs as an efficient, natural solution: “Taking the appropriate herbs provides phytochemicals that work to restore the microbiome and support vagus nerve function.” His top recommendations for gut-balancing herbs include:
Berberine: An herb with substantial anti-microbial properties, berberine helps manage the gut microflora.
Slippery elm: Due to its ability to form a protective film in the gut, slippery elm soothes irritation in the mucosal lining and keeps foreign substances out of the bloodstream.
Dandelion root: Known as a bitter herb, dandelion root activates bitter receptors throughout our GI tract, releasing the saliva, enzymes, and bile we need to break down our food.
Andrographis: Originating from India, andrographis has antiviral, antibacterial, and antiparasitic qualities. It helps to restore the GI tract and is a powerful anti-inflammatory herb.
3. Practice Calming Breathing Exercises.
Since the vagus nerve assists in regulating your respiration and heart rate, one way to improve vagal tone is by engaging in breathing exercises. Research has shown that practicing slow breaths lessens the activity of the sympathetic nervous system and boosts parasympathetic functions. In contrast, rapid breathing — something we tend to do when we’re on edge — doesn’t provide the same benefits.
Activities like meditation, yoga, tai chi, and qigong can facilitate a slow breathing practice.
But if you can’t get to a class, belly breathing is an excellent alternative, and it’s easy to do. Here’s how to get started:
Sit or lie in a comfortable position.
Place one hand on your belly and the other hand over your heart.
Breathe in deeply through your nose to the count of 4, allowing your belly to move your hand out or up. Note that your chest shouldn’t move with the breath.
Exhale for 4 counts. Notice how your belly lowers back to the starting position.
Repeat until you feel an increased sense of calm.
4. Hum a Tune.
Did you know that humming to yourself may be a healthy habit? That’s because the vagus nerve runs through your throat and provides sensory input to the ear. The act of humming offers a mechanical way to stimulate the vagus nerve and lessen heart rate and respirations, which may be the reason why many people find humming to be soothing to them.
Other vocal activities such as repeating a mantra or singing may improve vagal tone and promote a more peaceful state of wellbeing as well. So, go ahead — pick your favorite tune and start humming, or just wing it!
The Bottom Line
The key to improving vagal tone is to be on the lookout for factors that raise adrenaline during the day and, when levels are rising in the absence of a true emergency, introduce activities that curb the excessive fight-or-flight response, says Dr. Rawls. Though not a cure-all, when combined with a comprehensive natural protocol and a nutrient-dense diet, increasing vagal tone is a low-cost and simple tool to maximize healing and restoration.
Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme. You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.
REFERENCES 1. Bonaz B, Bazin T, Pellissier S. The Vagus Nerve at the Interface of the Microbiota-Gut-Brain Axis. Front Neurosci. 2018;12:49. Published 2018 Feb 7. doi: 10.3389/fnins.2018.00049 2. Breit S, Kupferberg A, Rogler G, Hasler G. Vagus Nerve as Modulator of the Brain-Gut Axis in Psychiatric and Inflammatory Disorders. Front Psychiatry. 2018;9:44. Published 2018 Mar 13. doi: 10.3389/fpsyt.2018.00044 3. Clancy JA, Deuchars SA, Deuchars J. The wonders of the Wanderer. Exp Physiol. 2013;98(1):38-45. doi: 10.1113/expphysiol.2012.064543 4. Mäkinen TM, Mäntysaari M, Pääkkönen T, et al. Autonomic nervous function during whole-body cold exposure before and after cold acclimation. Aviat Space Environ Med. 2008;79(9):875-882. doi: 10.3357/asem.2235.2008 5. Pal GK, Velkumary S, Madanmohan. Effect of short-term practice of breathing exercises on autonomic functions in normal human volunteers. Indian J Med Res. 2004;120(2):115-121 6. Vickhoff B, Malmgren H, Aström R, et al. Music structure determines heart rate variability of singers [published correction appears in Front Psychol. 2013 Sep 05;4:599]. Front Psychol. 2013;4:334. Published 2013 Jul 9. doi: 10.3389/fpsyg.2013.00334
FDA-approved pain medicines are dangerous, but the government is systematically attacking safer, non-addictive natural treatments. Action Alert!
A recent study in Switzerland found that acetaminophen poisoning increased by 40% following the approval of 1,000mg doses. This is just the latest data to indicate the public health problems caused by this commonly used pain drug, which is the active ingredient in Tylenol.
Despite the dangers of FDA-approved pain drugs, the federal government aggressively attacks and censors natural pain medicines like homeopathic treatments, CBD, medical foods, and supplements. This needless suffering must end.
We’ve written for years about the dangers of acetaminophen. It is the most commonly prescribed class of drugs despite causing50 percent of all liver failure in the US. According to the FDA’s adverse event database, acetaminophen has caused more than 100,000 adverse events and more than 78,000 serious adverse events, including 24,000 deaths. It has also been linked to asthma and hearing loss.
Now consider the federal government’s approach to natural pain medicines. The FDA essentially banned all injectable homeopathic medicines, which includes Traumeel, a prescription-only homeopathic medicine for pain with an extremely robust safety profile.
Previously, the FDA went after Limbrel, a medical food for the treatment of osteoarthritis. In a letter to Primus, the FDA stated that 194 adverse event reports for Limbrel were received between 2007 and 2017—about 20 a year.
Then, of course, there’s CBD. The federal government’s approach to CBD right now is frankly a mess, and we’ve sifted through the details in previous coverage. In short, hemp and its derivatives have been legalized at the federal level, but FDA laws still apply to products containing hemp, such as supplements, lotions, cosmetics, etc. Since 2018, the FDA has been trying to figure out how it will treat these products. Recall, too, that the agency has approved a CBD drug, and according to FDA rules, this means that CBD cannot legally be sold as a supplement.
We ultimately don’t know how the FDA will treat CBD supplements. If history provides any clues, the FDA will protect the drug-approval process and ban CBD supplements. To add to the confusion, Congress is directing the FDA to release an interim policy (called a policy of enforcement discretion) explaining how it will treat CBD products in the marketplace as the agency develops its final regulatory framework. Will the FDA release an interim policy that allows CBD supplements for the time being before banning them outright when a final policy is released? We just don’t know, but we should assume that the FDA will not do the right thing, especially when Big Pharma profits are at stake.
It is unconscionable, but unsurprising, that the FDA would reduce access to safe, non-addictive alternatives to dangerous opioid drugs that killed 30,000 people in 2018 alone. We’ve also seen basic information on natural health censored to protect drug industry profits during the COVID-19 pandemic. This cronyism has to stop.
Action Alert! Write to Congress and the FDA, telling them to issue a policy of enforcement discretion that protects consumer access to hemp-derived CBD supplements at therapeutic levels and full-spectrum hemp oil. Please send your message immediately. By sending this message, you will also be supporting our petition to ungag doctors so that they can share with patients the benefits of supplements and natural treatments for COVID.
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**Comment**
Our government shuts down anything that competes with its own lucrative products.
Looking back on her teen years of Lyme-related pain. (Life’s better now!)
By Resiliently Rachel
I sit in my wheelchair at the front office of my junior high. Tears sting my eyes as I explain to the school receptionist I need my mom to pick me up. She doesn’t understand. She asks why I need to go home.
Why? My feet and legs are on fire. It feels like pins and needles stabbing me everywhere at every second. I’m hanging on by a thread, using up everything I’ve got just to tell her I need my mom. As I start to panic, my friend steps in and repeats we need the phone so we can call my mom. I’m not well.
We don’t yet have words for what’s wrong with me. That answer won’t come for another six months. I watch as my friend reaches over me to bring the phone closer so I can dial the number. I feel the receptionist judging me, but I avoid eye contact and dial my home phone. My mom picks up on the first ring and before I can get a word out, I burst into tears. My mom says she’s on her way.
No one knew why I was in pain
This was my new reality. I went from being a healthy, athletic 13-year-old soccer player, to a girl who could barely sit up in a wheelchair. My knees hurt so bad, and my back felt like I was being stabbed in my spine, over and over again. It was constant.
Rachel age 13
We went to what felt like every doctor in California. Each week, it seemed I saw a new specialist who would take more blood, more x-rays, more scans… only to find out no new information. No one knew why I was in pain. And no one knew why the pain was spreading.
It started with my knees. Then my back, and my neck. Soon my shoulders were so hypersensitive even a feather-light touch could send me screaming in agony.
I described it to my family and friends as ‘being stung by a thousand bees’ but it wasn’t even that. There was no word in our language to describe what it felt like when someone touched the skin on my shoulders or upper back.
I learned to be on the lookout constantly, protecting myself from simple things such as a gentle pat by a well-meaning stranger.
This new and unforgiving symptom was especially hard, because at a time when I could have really used a hug… I could not receive one. It would be more than three years until my parents could hug me again.
Finally, a diagnosis
After six months of doctors’ visits, hospitalization, and no concrete answers, we finally found our first bit of hope. I was diagnosed with Lyme disease. After months of uncertainty, we had found the root cause of my pain. But it was still a long road ahead.
I began the prescribed antibiotic treatment, and within days, I felt worse than I ever had before. The pain was excruciating, the fatigue was overwhelming, and suddenly, I struggled to breathe when I was sitting up straight or lying down flat.
We tried propping me up with pillows and found being at a reclined angle made it easier to breathe, so we rented an adjustable bed from a medical supply company. The bed helped somewhat, but I still got sicker and sicker.
There was no way I could continue the eighth grade, and at this point, the pain wasn’t even the only issue anymore. I could no longer focus. I couldn’t think properly. I struggled to remember simple things that had happened hours earlier. A home health teacher came to my house twice to attempt some sort of education, but that was not in the cards for me.
The longest year ever
The year 2006 was the longest year ever. Although my own life seemed to have stopped, somehow the rest of the world kept going. Each day while my friends were at school, I would count down the hours until someone would be able to sign on to our instant messaging chat room.
I spent my time adding new movies to my Netflix queue, pondering life’s big question of which movie I wanted to arrive in the mail first. My family bumped up our plan to five DVDs at a time, so we had a constant rotation of movies coming to the house via snail mail. There were no video streaming services back then. Kids these days won’t ever understand the satisfaction of seeing those bright red envelopes in the mail.
I spent my days either watching TV, looking at the TV guide to find more shows to watch, or watching DVDs from Netflix. I spent all of my nights awake in bed, listening to infomercials through a 10-foot long headphone cord attached to my TV. I listened to the Home Shopping Network—or that guy selling barbecue grills—while playing solitaire on my mom’s laptop.
For a large portion of 2006, I got only a few hours of sleep at best each night. It was a constant nightmare I couldn’t get away from until we finally found a sleeping pill that worked for me. I didn’t care for infomercials, but I also didn’t want to be alone while the rest of the world was asleep without me. Each night, I listened to the voices of people trying to sell me gadgets I didn’t need, while I passed the hours until dawn.
I longed for connection to someone outside our house. When my friends were busy living their own lives, in their own homes, instant messaging was it for us. This was way back before we had all the social media sites so many of us now find so addicting. I couldn’t mindlessly scroll through Facebook, Instagram, or Pinterest to fill my time. I didn’t even have a cell phone, so texting wasn’t an option.
I was stuck in bed for eight months. My lowest point was when I hadn’t seen my own kitchen or living room for 30 days—since my last medical appointment. A combination of terrible insomnia, constant pain, and gripping depression controlled my mind and thoughts and made my life unbearable. I was exhausted, encompassed with despair, and had no hope for a bright future.
One shining light
But there was one shining light that kept coming back each day. That light was my neighborhood group of friends. I had grown up with these kids. Together we had climbed redwood trees, played tag until it was too dark to see, and spent hours picking cherries from the orchard by my house. My world was very different now. There were no more trees to climb or games of tag.
Instead, my friends came over—sometimes alone, and sometimes in twos or threes—and sat by my bed to keep me company after school or on the weekends. We rarely left my room. My standard wheelchair required me to stay in an excruciatingly painful position, so I used it as little as possible.
My neighborhood buddies found a partial solution to that problem. One day, my friends Julianne and Tenaya showed up with a reclining patio chair strapped to a wheeled platform. My chariot had arrived!
It was eccentric looking, to say the least, but it was also my passport to the outside world. After months of seeing nothing but the four bright green walls of my bedroom, I was escorted around the neighborhood, feeling the sun on my face and breathing fresh air. I couldn’t stop smiling.
The last time I had seen the trees outside, they had been barren from winter. Now they were budding with bright green leaves, bursting with color in early spring. I enjoyed seeing all the green as I sat with a fuzzy blanket on my lap, being pulled through the streets of my neighborhood by friends who were only slightly grunting at the combined weight of me and this cumbersome contraption. Eventually, my family procured a reclining wheelchair, which made forays into the outside world even more attainable.
A beauty makeover
On another day, my friends gave me a makeover, doing my hair and makeup in bed, followed by a photo shoot.
I could only sit up straight in a chair for a minute at a time, so we did the photo shoot in short bursts: one minute of rapid-fire picture taking, followed by a rest back in bed. Then repeat. It was moments like these that brought life back into my room. Back into me.
Alternative reality
Another thing that brought me joy was learning to shoot and edit videos. Working on my videos pulled me into a blessed alternative reality where I could somehow get away from my pain.
We used a hospital bed table—the kind that swings over the bed—to hold my computer and put a wireless mouse and keyboard on my lap.
I spent hours editing. I filmed music videos of me lip-syncing in bed. I filmed myself taking pills. Getting my PICC line dressing changed by a home health nurse. Playing games with my friends on the PlayStation. I filmed everything.
I was always in need of more footage because while everyone else was spending eight hours a day at school, I needed to cling to something that gave me a reason to keep fighting. That something became my passion for film making.
Then things shifted
Three years later, my reality changed again when I stood up and walked for the first time.
After recent work with a specialized upper cervical chiropractor, I had noticed a big decrease in pain. Almost like a switch had been turned off after years of malfunctioning.
Just a week prior, we had been able to adjust my wheelchair to sit up straighter. I could once again breathe in different positions. Now here I was, alone in my bedroom, standing up on crutches.
I stood there for a moment, looking at myself in my full-length mirror. I felt the hardwood floor under my bare feet, and I watched my reflection as I called down the hall for my parents to grab the video camera. I knew we would want this on film.
It took me 15 minutes to graduate from walking on crutches to a walker to just holding on to my mother’s arm for support. In 20 minutes, I was walking on my own, unaided, giving myself a tour of the house.
Everything felt different now. I was used to looking at the world from the vantage point of my wheelchair. Now, I stood taller than I ever had before, since I’d grown an inch and a half over the past three years.
To my surprise, I had to bend down to wash my hands in the bathroom sink. To my delight, I could see inside the microwave oven and easily retrieve a water glass from the kitchen cupboard. As I explored my new world that whole magical night, I kept ducking as I passed through doorways, afraid I might hit my head as I went through!
My journey wasn’t over…
Rachel and Bryan
I had a long journey ahead of gaining back strength in my legs and body, but I wasn’t wasting any more time. Three days after I was on my feet, I got my driver’s permit. I was turning 17 and I wanted to finally have a normal life!
I wouldn’t necessarily say it turned out normal—but I graduated from an independent study high school. From there I went to community college while I continued health treatment at home.
Two years later, we packed up the car and drove to Portland State University, in Oregon, where I transferred as a junior. While I was moving into the dorm that day, a guy on my floor remembers looking out his window and seeing me walk into the building. We didn’t know it then, but five years later, that man would be my husband.
My health challenges have no doubt helped shape me into who I am today. For most of my teenage years, I felt I was being dragged through life. I didn’t know how to imagine a future where I could be healthy. I didn’t want to hold hope for anything, in fear it would never be realized, and I’d be stuck where I was forever.
But something changed in me after I began walking again. I had done what I thought would never be possible, and it forever altered my outlook. Even with the wheelchair gone from my life, I would still face struggles with my health, but I now knew about resilience, a gift silently bestowed upon me during those many long years in bed.
Resiliency
Resiliency became my motto. After a difficult battle with toxic mold exposure in college, ‘Resiliently Rachel’ became part of my identity as well, as I launched a blog to create a space for me to share my journey with Lyme and mold.
Over the next few years, I dealt with new and scary health challenges, which brought me into the world of neuroplasticity and learning about the power the brain has over the physical body.After countless hours of brain retraining work, I overcame the last of my symptoms that had been lingering from mold and Lyme treatment, specifically food allergies and chemical sensitivities.
I now live in Arizona with my husband and dog. I work in an elementary school doing speech therapy, and in my free time, I enjoy hiking, as well as filming and editing videos—an activity that still brings me happiness and peace. I wouldn’t change any part of my story growing up with Lyme disease. It made me who I am, and it allows me to give back to others by sharing my story and hopefully inspiring those facing similar challenges to keep holding on a little while longer.
Every August 8, my family celebrates what we call “Walking Day.” Here’s a video I put together about it.
Since Lyme/MSIDS patients can experience pretty much everywhere, chiropractors need to be educated about tick-borne illness as they will often be sought out first by patients.
prescribed antibiotic treatment, and within days, I felt worse than I ever had before. The pain was excruciating, the fatigue was overwhelming, and suddenly, I struggled to breathe when I was sitting up straight or lying down flat.
Three years later, my reality changed again when I stood up and walked for the first time.
