She wrote “Lyme Disease, Ticks and You” to help people help themselves
By Shelley Ball, PhD.
In the spring of 2019, I discovered a fully engorged tick on my back. Alarmed and distressed, I headed to my local hospital, knowing they would remove it and let me know what else I needed to keep myself safe.
The ER doctor gave me a single “prophylactic” dose of the antibiotic doxycycline. He assured me it would kill any Borrelia bacteria transmitted by the tick, and that I could rest easy. I trusted my doctor and had confidence in what he told me.
That turned out to be one of the biggest mistakes I have ever made! It has cost me my health, and my life has not been the same since. I have experienced more pain and illness in the past two years than I ever have in my entire life and it’s not over yet.
Trying to navigate the health care system in Canada for treatment of Lyme disease and two other tick-borne infections (caused by Bartonella and Babesia) has been both an eye opener and a nightmare. It introduced me to blatant discrimination by our health care system, which does not recognize chronic Lyme disease as a treatable illness.
It doesn’t matter that hundreds of thousands of people across the United States and Canada are ill with chronic Lyme. Most doctors in Canada (and to a lesser extent, the United States) will tell you it’s all in your head. Infectious disease doctors will often refuse to even see you. This was my experience.
I struggled to find help. My family doctor gave me six weeks of doxycycline. It got me feeling better than I had felt in a few years. But once the medicine was gone, I felt sicker than ever. I turned to the medical system for more help, but that is where it ended.
Desperate for help
I was on my own. No doctor would prescribe more antibiotics. I was so sick and desperate for help. That is when I sought out fellow Lyme and tick-borne disease (TBD) patients for advice.
Through them, I heard about a private clinic in Ontario that has Lyme-literate medical doctors. There was a four-month waiting list to get into the clinic. However, for me, that was better than the alternative, which was to go to the United States for treatment.
Treatment is expensive. As a Canadian, having to pay in U.S. dollars would only increase the financial burden of getting treatment. Thus, I opted to receive treatment from the private clinic in Ontario, paying out of pocket.
I am 17 months into treatment from the private clinic and I have improved compared to my condition in the fall of 2019. But I remain ill. There is still a long way to go.
As with many Lyme/TBD patients, my treatment consists of both prescription drugs (antibiotics and anti-malaria medication) and herbal supplements. About 80% of my treatment consists of herbs and other naturopathic treatments. They work. It just takes time. Years.
Recovery from chronic Lyme and TBDs is a marathon, not a sprint. And the evidence from the peer-reviewed science literature as well as anecdotal reports from Lyme-literate doctors across North America and their patients, strongly suggests that for those of us with chronic tick-borne infections, our goal is remission.
Complete eradication of these infections is unlikely, especially for those of us who have had them for years or even decades. But attaining much better health IS possible. I have seen others attain it. I am on the road to it.
When I began my Lyme journey, people who had battled tick-borne illnesses (or those whose loved ones had) helped me the most. Several months into my recovery and beginning to feel somewhat better, I began to think about how to help other Lyme and TBD patients.
How could I pay it forward? I have a science background. I used to be a university professor and research scientist. And although infectious diseases were not my area of speciality, my science background meant that I could read the peer-reviewed literature on tick-borne illnesses and understand most of it. So I got busy reading the research and trying to understand what I was up against and how to recover from it.
Birth of a book
While I was pondering this, Firefly Books approached me about writing a book about Lyme disease and I jumped at the chance. I had learned a lot. I thought a lot about what I know now that I wish I had known when I was first bitten. What information could have helped me? And what information can help others deal with these insidious diseases?
There are some excellent books out there about Lyme and other TBDs. They are great resources. But many are very detailed. For people without a science background, they are not an easy read.
So, I wrote my book, Lyme Disease, Ticks, and You, as a primer for those who need to access the fundamentals of Lyme disease and TBDs, quickly. I wanted to write a book that could help others navigate diagnosis and treatment of Lyme and TBDs.
I have learned from experience that to recover from Lyme and TBDs, we need to be our own vocal advocates. To do that, we need information . And so, my book is there to help, to give you the knowledge you need to help yourself. It will help you prevent tick bites while still enjoying the outdoors.
If you are already battling tick-borne diseases, my book will help you navigate diagnosis, treatment, and give you hope that recovery is possible. I hope it helps you or your loved one to regain health and get back to enjoying life to its fullest.
Shelley Ball, PhD, is the Founder and President of Biosphere Environmental Education, a social enterprise focused on connecting people with nature. Her book, Lyme Disease, Ticks and You: A Guide to Navigating Tick Bites, Lyme Disease and Other Tick-Borne Infections is available here and here.