Dr. Bill Rawl's book, Unlocking Lyme: Myths, Truths, & Practical Solutions for Chronic Lyme Disease, comes from an interesting perspective because Dr. Rawls himself was diagnosed with Lyme disease. I appreciated a doctor who is willing to use the term "chronic Lyme disease" in the title of his book.
Because Dr. Rawls has chronic Lyme himself, there is a strong sense of empathy for the patient in the book. I especially appreciated this description of the Lyme experience:
"Just when you think everything is turning around, you have a setback for seemingly no reason. On top of that comes the fear of slipping back into a cycle of never-ending misery. How long will this last? Will it ever get better, or will I have to live this way for the rest of my life?"
In the beginning of the book, Dr. Rawls discusses why he believes it has been so difficult for chronic Lyme patients to get recognition, funding for research, accurate testing, and better treatment:
"The status quo is the accepted norm that most everyone follows. While it isn’t always correct, it’s assumed to be correct, and most people never veer from it their entire lives. When it happens not to be correct, changing it is like swimming against a stiff current.
People typically don’t voluntarily choose to swim against the current because it’s difficult and sometimes hazardous - the choice is often made for them by life’s situations."
For Dr. Rawls, it was being diagnosed with chronic Lyme disease. His life situation forced him to critically evaluate his practice as a conventional medicine doctor. He educated himself and learned all he could about alternative therapies, and the result is this comprehensive book.
Unlocking Lyme has good readability. It seems Dr. Rawls took into account it would be read by Lyme patients who need larger print and short paragraphs. It is complete without being overwhelming.
One thing this book helped clarify for me was how I could've been bitten by a tick so long ago, only to have symptoms show up years later. Dr. Rawls has a very similar story. It turns out, my body was in a stalemate the borrelia microbe. Some people can remain in this state for the rest of their lives, but in my case a stress and a breakdown of my immune system caused me to become symptomatic. The microbe broke the stalemate and was beginning to win the battle.
Along these same lines, Dr. Rawls asks an interesting question: "Are people getting sicker from Borrelia today more than they were in the past?"
He speculates that it is not an increase in tick bites or borrelia infections, but an increase in immune dysfunction is causing our simmering pots to boil over. The increase in immune dysfunction is caused by artificial foods, stress, and toxins in the environment. He calls these factors, "system disruptors." He comments, "Once chronic immune dysfunction becomes established, the misery can last a lifetime."
Dr. Rawls encourages the Lyme patient to start with a self-assessment of personal system disruptors and make the ultimate goal of increasing wellness, not eradicating disease. He gives detailed insight into how to minimize system disruptors in all areas, dedicating a chapter to each.
To treat chronic Lyme disease, Dr. Rawls recommends a holistic approach. He believes in primarily treating with herbal therapies, specifically the Buhner protocol. If this is your treatment of choice, it will be extremely helpful in determining your herbal and supplement regimen. I was grateful to learn that houttuynia herb (the herbal treatment I currently take) is recommended for Lyme and Babesia.
I have a couple of criticisms of the book. One, Dr. Rawls states that antibiotics have a place in Lyme treatment, but that there are serious concerns about long-term antibiotic use. He recommends very restricted use of antibiotics citing lack of research. While I respect his preference for — and expertise in — herbal protocols, I think there's an opportunity for a more broad-minded perspective on the vast range of treatments for Lyme.
My second criticism is not of Dr. Rawls specifically, but about discourse on Lyme treatment in general. Dr. Rawls does not discuss cost, which is one of the most challenging aspects of supplementation and protocols for Lyme patients. Dr. Rawl's list of recommended herbals and supplements isn't excessive; however, it is significant, and wouldn't be covered by insurance. The cost of high quality supplements and herbal protocols, especially when regimens are constantly changing, is a burden on Lyme patients. I feel in a comprehensive book about Lyme, addressing ways to minimize the cost would've been a refreshing addition.
For me, the most useful sections of this book were the thorough lists of types of medical providers, laboratory testing, and symptoms for each type of microbe. Unlocking Lyme will stay on my shelf next to my other Lyme books as a great reference, and I would recommend you check it out.
"Breathing in, I calm my body. Breathing out, I smile. Dwelling in the present moment I know this is a wonderful moment." - Thich Nhat Hanh
It's no secret to me - stress kills.
Even so, prior to reading The Last Best Cure: My Quest to Awaken the Healing Parts of My Brain and Get Back My Body, My Joy, and My Life, I thought stress, like my love of French fries, would manifest in problems later in life. At only 35 years old, how could stress be the cause of my autoimmunity and a serious relapse of Lyme disease?
The answer is in Donna Jackson Nakazawa's important book. It's about the science behind "psychoneuroimmunology" or PNI for short. This is an exciting discovery about the connection between the nervous system and immune system. Basically, emotional stress suppresses the immune system and may trigger chronic disease.
The Last Best Cure chronicles Donna Jackson Nakazawa's very personal story about the stress of childhood trauma leading to a potentially deadly autoimmune response in her body.
As you read on, you will see this isn't a typical book review. This is a review of how this book changed my life.
Unlike Donna, I didn't experience childhood trauma. However, reading the introduction to her book felt like she was speaking directly to me. Like Donna, I battled lifelong anxiety; and like Donna, I experienced daily fear that my body would continue to attack itself to the point where I, to put in bluntly, would die.
At age 29, I was diagnosed with an autoimmune thyroid disorder called Grave's Disease. Then, at age 33, an autoimmune spine disorder called Anklosing Spondylitis. Then, at 34 I was finally diagnosed with Lyme disease. In December of 2014, coinciding with a period of extreme emotional stress, I found out my immune response started attacking a different part of my spine and the soft tissue in my back. This type of response baffled my doctors and introduced me to the growing population of people with autoimmune responses which don't fit into the disease boxes conventional medicine has developed.
I imagine others in this box feel similar to how I felt, hopeless and scared. If in 2016 we can create a bionic hand that is controlled by the brain, why can't they figure out what is wrong with me and, furthermore, why can't they fix it? I related to Donna's experience of living in constant "fight or flight" mode. My days were filled with a non-stop inner dialogue of worst case scenarios and health setbacks when I couldn't calm myself down.
The worst part was not being able to trust my body or my mind. People who haven't developed chronic health issues know when they need to go to the doctor. They might develop a rash or spike a fever, but other than that they just go on with their day. For those of us with chronic issues, we never know what to believe. Are my heart palpitations from anxiety or heart failure? Is my headache stress or inflammation in my brain? And when you look on the internet (and as much as people say don't do it, you can't help it) it always says to call you doctor. Well, after the first month of bi-weekly emails we know they don't want to hear from us anymore, or we fear they won't take future symptoms seriously from the patient who constantly cries extremity numbness.
As I continued reading The Last Best Cure, I struggled to find the connection between Donna's disease triggers and my own. As far as I could remember my childhood was free of trauma, but with the similarities of lifelong anxiety and autoimmune diseases, I feared a trauma occurred before my memories began. In my case I believe it was a tick bite sometime in my preteens. The Lyme bacteria triggered immune dysfunction, triggering a fear response, triggering immune dysfunction, and so on and so forth. Then, a period of extreme stress brought it to the forefront and where I am today.
Donna made herself into her own personal science experiment. Changing nothing else, but practicing mind body techniques she changed the disease process in her body. She practiced mindfulness meditation and yoga, and also received acupuncture.
I use the ideas presented in this book on a daily basis trying to keep my autonomic nervous system in check. How truly amazing the human mind really is. What a gift - consciousness - and the ability to fully experience this life.
The quote at the bottom of this post really spoke to me in relation to the discoveries I had in reading The Last Best Cure: "If you woke up tomorrow and your biggest problem was gone, how would you know? What would you do differently?"
How would I know? Well, a clear MRI and a lower sed rate would help, but also I would be able to live in the moment most of the time and not live in a heightened state of fear and panic. As was Donna's goal, I would find and reclaim my joy.
What would I do differently? Well, that really has been the lesson in all this.
Donna talks about how when you feel "bad" physically you lose your sense of self, because in one or many ways you feel broken, defective. My whole young life I identified myself as an anxiety ridden, fearful person, but now I know I was a simply person with a misfiring immune system. I thought it was my fault. My fault, because I was emotionally weak. Now I know it was not my fault. To regain my sense of self, I must learn to trust myself.
This realization in relations to the question: "What would I do differently?" or to rephrase the question "How will I rediscover my sense of self" is going to change my life.
Here's what I'm going to do: I'm going to go out and engage with this wild, magnificent world we live in. I'm not going to be afraid anymore, because I'm literally not going to be afraid anymore. The "scared of the world" persona isn't who I am anymore. Who knows I might even jump out of a plane.
Please read this book. It's for everyone. Anyone who has been diagnosed with a chronic illness, anyone who loves someone with a chronic illness, anyone who experienced childhood trauma, anyone with anxiety or depression, anyone who wants to feel better, anyone who wants to be inspired.
I feel like a new purpose is unfolding in front of me. What if I can find my joy? And what if I can help others find the same?
Next up is reading hew new book, Childhood Disrupted: How Your Biography Becomes Your Biology, and How You Can Heal:
"If you woke up tomorrow and your biggest problem was gone, how would you know? What would you do differently?" - Unknown
I've tried every low-inflammation diet out there. Every. Single. One. There were times where I was eating only vegetables and meat and there were times when I fell off the wagon and ate everything in sight.
On the most restrictive diet I was losing too much weight and my quality of life suffered. No one wanted to invite me out to dinner or to a party, because they knew there would be nothing for me on the menu. On the standard American diet my aches and pains were unbearable. I couldn't sleep at night, because of the aching in my back and hips. I'd spend hours tossing and turning.
Enter The Lyme Diet. Dr. Nicola McFadzean's plan is the perfect balance. Don't get me wrong, compared to the standard American diet, it is extremely restrictive with the basic principles being no gluten, no dairy, and no sugar. But compared to an incredibly restrictive diet, like the autoimmune protocol, it is a diet you can stick to while still being able to dine out and not spend every waking hour cooking from scratch.
Like most anti-inflammatory diets, there are restrictions on gluten-containing grains and dairy, but unlike some anti-inflammatory diets, one is still allowed eggs, rice, beans, and potatoes. I think any anti-inflammatory diet has to be individualized. Personally, I avoid eggs, some types of beans, and limit my grain intake to 1-2 servings a day. Over time, I've been able to determine which foods increase my symptoms and limit those in my diet.
The Lyme Diet is also a quick read. It's not published by a major press, so there are some aspects are slightly unpolished, but, for me, it didn’t take away from the information presented. This is also a comprehensive book about Lyme and wellness. It gives clear and concise suggestions about things like detoxification, supplementation, and natural treatments. There is also a list of resources and referrals. After reading this book, I hesitated to put it back on my shelf, because it feels like it should always be with me.
Many doctors have told me, "You have to live your life." If I have a cupcake at my sister-in-law's wedding, it's okay. I might have physical consequences, but if most days I stick to the diet, it’s better than no days.
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.