My Chronic Lyme Disease Journey
by Dr. Bill Rawls
Likely, you have come to this page in hopes of sorting out some of the confusion surrounding Lyme disease.
There is so much controversy around this disease because most doctors don’t understand it. Even many doctors, who consider themselves experts, do not completely comprehend its complexities.
But I have one qualification that most other physicians do not. My life—and a busy medical career—were disrupted midstream by fibromyalgia, later diagnosed as Lyme disease.
My late 40s were marked by debilitating fatigue, tremendous brain fog, aching all over, burning in my feet and tingling in my hands, skin rashes, joint pain, chest pain, heart palpitations, mood changes, and poor sleep. I know what it’s like to start and end every day feeling like you have a terrible flu. Over several years, I experienced virtually every known symptom of Lyme disease.
Ultimately, this caused me to stop practicing obstetrics. But because I didn’t have a firm diagnosis at the time, declaring disability wasn’t an option. As an alternative, I started a less demanding primary care practice that did not require night call. The practice provided me with the environment I needed to recover. I had control over my work hours and the intensity of the work.
However, the obligations of the practice prevented me from leaving town and working limited hours created financial constraints. Traveling to see specialists in Lyme disease or having expensive labs done simply wasn’t possible.
I had to figure things out using resources at my immediate disposal. Having since met numerous people who squandered life savings chasing heroic solutions that didn’t work, I now consider it a blessing in disguise.
Over several years of persistent effort, I was able to recover my health completely — the things that I learned along the way changed my life forever. My struggle with chronic Lyme disease taught me things that most other physicians do not know. I now use that knowledge to help others understand and overcome this often frustrating illness.
Borrelia, the Misunderstood Microbe
Retrospectively, I may have harbored Borrelia burgdorferi (the microbe that causes Lyme disease) for years before I actually developed symptoms. I’m an outdoor person; tick bites have always been an everyday affair.
It’s not uncommon for people to harbor Borrelia and not know it; stealth is this microbe’s middle name.
Lyme disease is mostly transmitted by nymphal ticks, which are about the size of the pin. They bite, transmit the microbe, and then drop off — most people aren’t even aware of being bitten. Because symptoms of the initial infection are so mild (if they occur at all), it’s not uncommon for people to be completely unaware of being infected.
And Borrelia isn’t the only microbe to worry about. Ticks carry many microbes that have similar characteristics to Borrelia. What they all have in common is stealthy characteristics that make them hard to find–and even harder to get rid of.
If immune system function is robust, a person can harbor these types of microbes indefinitely without ever having symptoms. When illness does occur, it’s typically chronic and debilitating, but not life-threatening. Additionally, the degree of chronic illness is highly variable. Some people are severely debilitated, while others are only marginally miserable.
What You Need to Know About Borrelia
Borrelia rarely causes life-threatening illness, but it can make you desperately miserable for a lifetime.
There are 20 known species of Borrelia that can cause human illness (not just Borrelia burgdorferi), and it is not uncommon for people with Lyme disease to harbor at least two species.
Beyond Borrelia, there are hundreds of species of stealth-type microbes that can be transmitted by ticks. Mycoplasma and Bartonella are the most common, but there are many many others. Most everyone on the planet harbors some stealth microbes without knowing it.
All these factors make Lyme disease extremely difficult to diagnose; lab tests are notoriously unreliable, especially in chronic illness.
Because Borrelia is so difficult to diagnose and can be harbored without causing symptoms, no one really knows how many asymptomatic carriers there are worldwide.
My Experience with Antibiotic Treatment for Lyme
When I was first diagnosed with Lyme disease, my first response was to try antibiotics. But every time I started a new round, I would be absolutely miserable by the second week.
Nausea, abdominal discomfort, and generally feeling terrible all over increased until I was forced to stop the drug. Probiotics didn’t help and the same response occurred to different types of antibiotics. While some people tolerate antibiotic therapy better than others, it became obvious that I would have to find a different solution.
I later discovered that my experience was not unique; many people seem to have the same response
I also met numerous people who had undergone 6-9 months of intravenous (IV) antibiotic therapy, only to be right back where they started within a couple of months of finishing the antibiotics.
Though there may be some logic in using antibiotics for 2-4 weeks during acute infection, many people develop symptoms despite initial use of antibiotics.
As I came to know the microbe better, I began to understand why antibiotics are not necessarily a good treatment for chronic Lyme disease. Though some people do overcome Lyme disease with antibiotics, it doesn’t occur consistently enough to be considered reliable. To date, no clinical studies have shown benefit from long-term antibiotic therapy for chronic Lyme disease.
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