Minnesota Lyme Association
Zoom Presentation with Simone Childs-Walker, MD
Tuesday, May 10th at 6:30PM CST
Osteopathy for Tick borne Illness and Other Chronic Illness
We are honored to have Simone Childs-Walker, MD sharing her knowledge about the various ways patients can utilize osteopathic manual medicine to heal. Dr. Walker completed her family medicine residency with Hennepin Healthcare and received her certificate in integrative therapies and healing practices from the University of Minnesota.
Osteopathy is a tradition of hands-on healing that aligns the body’s structure to promote optimal function and health. By opening blood flow, lymph drainage, and nervous system innervation to all tissues in the body, Osteopathic Manual Medicine can help facilitate recovery from almost any illness – including tick-borne disease.
Pharmaceutical treatment: Lyme is a bacterial infection, and you can’t improve cognitive function without killing the bacteria that’s causing it. Sometimes symptoms can get worse as bacteria die off faster than your body can eliminate them (a Herxheimer reaction), but in my experience, the payoff is worth the temporary increase in discomfort and decrease in capabilities. Your doctor may want you to pulse antibiotics in order to give your body time to recover. There are particular antibiotics that work best to penetrate the blood-brain barrier and improve cognitive symptoms. Because every single case of tick-borne illness is unique, there is no set protocol, but your Lyme Literate Medical Doctor (LLMD) can tailor one to your needs.
Supplements: Certain supplements can help reduce inflammation and neurotoxins. Glutathione and Essential Fatty Acids are two that are commonly used (but again, I can’t give specific medical advice; you need to check with your LLMD about which supplements, and what dosage, would be appropriate for you). I’m wary of doctors who sell supplements themselves (you want to make sure your health, not their financial gain, is their top priority). Though supplements may seem good because they’re “natural,” they can have side effects and contraindications, so don’t always assume that natural is better. For me, I’ve needed a combination of both pharmaceutical treatment and supplements to improve all of my symptoms of Lyme disease, babesiosis, and ehrlichiosis.
Rest: Your body needs adequate sleep to heal. This can be really hard to come by for Lyme patients, and it also can be aggravating and downright boring to be in bed all the time. But your body is working really hard to fight infection, and it needs all the rest it can get in order to do so. Even now, a decade into remission, I still can get neurologically overstimulated and experience a flare-up of cognitive symptoms. When that happens, I need to wind down, give myself some quiet time, and get extra sleep.
Anti-inflammatory foods: In my post “The Lyme Diet,” I discuss foods that help with reducing inflammation. There are good foods to avoid, like gluten and processed sugar, and good foods to include, like fruits, vegetables, and proteins. Certain foods have antioxidant properties. Whether eating them has helped my cognitive function, I can’t say for sure, but I know it hasn’t hurt, and I’ll take any excuse to have a piece of dark chocolate!
Pacing: It can be enticing to keep reading a book that you’re really into, or to binge watch a show, but doing either can be taxing on a Lyme-riddled brain. Often, I don’t know I’m overstimulated until it’s too late. I feel fine reading one page, and then another, and then all of a sudden, my head feels like it’s full of molasses. I’ve learned to stop while I’m ahead. You might tell yourself, “I have to stop reading after two pages, even if I feel fine, and rest for twenty minutes.” Eventually, as your infections get better, you’ll be able to do more, but you have to think of improving cognitive function as a marathon, not a sprint.
Making lists: Because memory can be so impacted by tick-borne illness, it can help to make to-do lists for each day. You can literally write down tasks like “shower” and “eat lunch,” and check them off when you’ve done them (it’s especially helpful to set reminders, either in writing or on your phone, to take your medications). Write out only what you can handle for one day at a time, and put other items on lists for later in the week. Remember to include self-care items, too, like “rest” or “take a bath.”
Neurofeedback: This non-invasive brain training program helps your brain to work optimally (the system I use is called Neuroptimal). I use it to help quiet my brain down; others use it to sharpen their thinking. The process uses your brain’s own information to figure out what it needs. It’s a relaxing process that involves watching kaleidoscope images on a screen (you can close your eyes if those feel overstimulating) and listening to gentle music while sensors are attached to your head. You’ll hear occasional skips in the music, which are signals that help your brain get back to its optimal state. Neuroptimal is great because it works on the whole brain at once. The neurofeedback practitioners I’ve worked with have cautioned against doing neurofeedback that only works on one section of the brain at once, saying this can actually worsen Lyme brain. I first got connected with my practitioner through a sleep clinic (which meant that sessions were covered by insurance). Your LLMD may want to do a sleep study, or refer you to a practitioner; you can also find one through the Neuroptimal site.
Body work/cranial sacral massage: I do a type of hands-on therapy called Integrative Manual Therapy, which encompasses cranial sacral therapy and neurofascial processing. This gentle, light touch helps lymphatic drainage, and often calms my limbic system Easing these symptoms reduces my brain fog, allowing for better cognitive function. Some physical therapists offer this type of therapy (which again means that insurance can cover it).
Play word and memory games: To help sharpen my brain (and keep me busy), a friend used to play writing games with me over email. He’d set rules such as, “Tell a story about a dog using only three syllable words” or “Tell me the name of someone we went to school with, and then come up with another using the first letter of that person’s last name.” I think these games helped improve my memory. It was nice to do them over email because I could take as long as I needed to complete them.
Recall the music or games of healthier times: Memory care units for the elderly sometimes use music therapy to help prompt long-term memory. People struggling with short-term memory are often able to recall and sing entire songs from their youth. In the midst of convalescence, I played an old card game, “Scrooge.” This elaborate version of double solitaire requires memory, quick thinking, and strategy. These were not functions that I could generally execute well in those darkest days of illness, but while playing that card game, I suddenly could. When I won handily, my opponent quipped, “There’s nothing wrong with that brain of yours!”
Limit stimulation: I quickly learned that loud noises, crowded rooms, and flashing screens would stimulate my brain to the point of shut down, and then brain fog would settle in. By limiting the amount of time I spent on screens, and avoiding particularly fast-paced shows, I was able to keep my brain calm so I could engage in other activities like writing and reading.
Accept that there will be setbacks: Healing from tick-borne illness is not linear. You will regain some cognitive function, and then have periods of brain fog, and then start improving again. Eventually, if you follow your doctor’s protocol and stick to some of these tips, you should start to see more good days than bad. I still sometimes struggle with cognitive issues, but they are slight now. When I was at my sickest, I couldn’t read or watch TV. I mixed up my words. My head ached. Now, I can write, teach, read and watch TV in short segments, and generally carry on with good cognitive functioning, so long as I work to maintain my health.
Jennifer Crystal
Writer
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her using her email.
Lyme/MSIDS patients often benefit from Chiropractic care. Chiropractors need to be educated on tick-borne illnesses as they are often the first health practitioners sought after as many patients will not attribute their joint pain & other physical ailments to tick-borne illness.
This case report demonstrates this as a patient seeing a chiropractor with joint popping with each articulation and a continual joint subluxation issue, was found to be infected with two strains of Bartonella. I also had these symptoms in my knee.
Many are unaware that the first two years of chiropractic education is exactly the same as medical doctor education.
Many are also unaware of the history of collusion within the American Medical Association in attempting to destroy the chiropractic profession.
This is important history to know as the AMA is an extremely powerful organization with a ongoing history of vilifying anything considered competition(compounding pharmacies, naturopaths, homeopathy, herbalists, etc). The saying, “Those who do not learn from history are doomed to repeat it,” comes to mind.
Finally – the Whole Truth about the AMA’s campaign to Contain and Eliminate Chiropractic
In 1975, a whistleblower, who called himself “Sore Throat,” fed information about how the AMA’s Committee on Quackery was aiming to “contain and eliminate” a competing profession, chiropractic.
The new book, “Contain and Eliminate: The American Medical Association’s Conspiracy To Destroy Chiropractic,” answers previously unanswered questions about conspiracies within conspiracies involving the Church of Scientology v. the AMA and the AMA v. chiropractors in one of the longest antitrust cases in U.S. history.
This story has never been told in its entirety.
“CONTAIN AND ELIMINATE is a story that needs to be told not for revenge but for restoration and rehabilitation to the image of chiropractic which was disparaged and destroyed resulting in millions of patients who would never seek the services of a doctor of chiropractic because the image of the profession was so tarnished by the ACTIVITIES of the American Medical Association.” Who should get a copy of the book CONTAIN AND ELIMINATE? Everyone who has been either positively or negatively impacted by the decades of illegal activity of the American Medical Association.
From your interested patients, to your medical physician friends to your attorney and especially your library, this story needs to be shared with those who may never have understood the plight of the chiropractic profession and your struggle to survive.
Another book written by Wolinsky and worth checking out is The Serpent on the Staff: The Unhealthy Politics of the American Medical Association
Fancy ergonomic chair or not, spend any length of time at your desk—or slumped on the sofa with your laptop or phone—and you’ll start to feel the effects. Tension between the shoulder blades, tightness in the upper back and shoulders, and pain radiating along the neck are all symptoms of sitting for too long. Not to mention, you may notice other side effects like bad posture, neck strain, circulation issues, and even shallow breathing. And you’re not alone: The American Chiropractic Association reports that half of all working Americans experience back pain symptoms, and as much as 80% of the population will deal with back problems at some point in their lives. Factor in our largely sedentary lifestyles, and it starts to make sense.
Here’s the good news. In addition to keeping our muscles flexible and strong, stretching can help alleviate pain and tension so you can get on with your life. We spoke with Lynelle McSweeney, D.C., a holistic chiropractor in Reno, Nevada, for her input on the value of stretching and the most effective stretches for upper-back pain. (See link for article)
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.
In 1975, a whistleblower, who called himself “Sore Throat,” fed information about how the AMA’s Committee on Quackery was aiming to “contain and eliminate” a competing profession, chiropractic.
“CONTAIN AND ELIMINATE is a story that needs to be told not for revenge but for restoration and rehabilitation to the image of chiropractic which was disparaged and destroyed resulting in millions of patients who would never seek the services of a doctor of chiropractic because the image of the profession was so tarnished by the ACTIVITIES of the American Medical Association.” Who should get a copy of the book CONTAIN AND ELIMINATE? Everyone who has been either positively or negatively impacted by the decades of illegal activity of the American Medical Association.
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.
Madison Area Lyme Support Group 