by Brad Leahy

When I was growing up in Maryland, Lyme disease was something we all heard a lot about. We knew to wear bug spray, check for ticks, and look for the telltale bull’s-eye rash. What we didn’t hear about is what to do when the traditional signs of Lyme disease aren’t present, and the normal treatment methods don’t work.

What you may not know about Lyme disease is that not all patients are cured by the normal regimen of antibiotics. For many people, if the disease is caught early, symptoms resolve after a two to four-week antibiotic treatment. I, unfortunately, didn’t fall into that category.

It’s ironic that the owner of a pest control business would contract Lyme disease! However, I’ve spent much of my life working outside and have been bitten by hundreds of ticks over the years. The fact is, it only takes one tick bite to be infected. That one instance happened to me around October of 2013.

Struggling to Find A Diagnosis

When I first contracted Lyme, I was recovering from back surgery and started having odd muscle spasms, hip and joint pain, and headaches every day. At first, I played down my symptoms, chalking them up to side effects of surgery. But, as my back recovered, it got harder and harder to blame my symptoms on the that.

I began to develop other symptoms, too. I couldn’t sleep, my heart would race, I had pain in my teeth and every muscle in my body, along with high fevers and night sweats. I was at my general practitioner’s office every one to two weeks, where I received a different diagnosis every visit for what my symptoms could mean. In March 2014, nearly six months later, I was finally tested for Lyme. Since I didn’t ever have a bull’s-eye rash, it never crossed my doctor’s mind that I could have Lyme.

I got the call saying, “The doctor wants to see you in the office right away.” Finally, I had a name to put with my symptoms. I was told I had tested positive for Rocky Mountain spotted fever and potentially two other tick-related diseases. However, I found out it was not Rocky Mountain spotted fever when I got a letter from the CDC six months later confirming that I had Lyme disease. Oddly enough, I felt relief at that news, thinking, “Now we can finally begin treatment and I can feel better.”

I was put on 20-days of antibiotics, the normal course of treatment. When the first cycle didn’t work, I started a second round of antibiotics for 30 days. By my third round, I knew it was time to start looking for another solution.

Seeking a Treatment

Treatment for Lyme disease is not one-size-fits-all. There is wide disagreement on how to treat chronic cases of Lyme. Most general doctors are not what are referred to as “Lyme-literate,” meaning they do not have any specialized training in Lyme. While general practitioners may be familiar with treating “normal” cases of Lyme, chronic Lyme disease is a different ball game. In most cases, your best chance of finding a solution to manage your symptoms is a Lyme-literate medical doctor (LLMD), affiliated with the International Lyme and Associated Diseases Society. There are relatively few of them in the country.

Luckily, one such doctor was located just one hour away from me. I had a three-month wait to get an appointment. The LLMD worked with me to treat my whole body. I changed my diet and started a new treatment protocol. My doctor prescribes me a different assortment of antibiotics and supplements, and then I monitor clearly over the following months how I feel. When I go back, we assess how it worked and then do it all over again. I worked with my doctor for a year and a half to get things somewhat under control.

Now, two years later, I am doing okay. I feel okay today. I have to look at things on a day by day basis because the disease still affects me differently each day. Over the past two years, I would often miss at least one or two days of work each week when my joints hurt so bad I couldn’t get out of bed. I am lucky enough to have a great staff that not only accommodated but helped and continues to help me throughout my treatment.

Advocating for a Cure

In my daily job, I help Maryland residents protect themselves and their families from ticks by helping make their homes and yards safer. Although awareness about ticks and Lyme disease is growing in the general population, I feel that doctors and medical care are where we can make the biggest gains. We lack enough medical professionals who can think outside the box when it comes to Lyme.

Traditional antibiotics don’t work for everyone, so finding a medical professional that can work with you to find alternative solutions can be difficult and costly. Many Lyme patients have to travel long distances just to be seen by an appropriate doctor. Beyond the travel costs, most LLMDs don’t take insurance. Patients with chronic Lyme disease often have to spend upwards of $10,000 per year, just to be able to function.

Institutions like Hopkins and the Mayo Clinic are devoting time and effort toward Lyme research and training. General practitioners, however, need to be trained further on the Lyme disease so that we can test and treat patients early.

With better awareness in our medical staff, we can help identify and treat Lyme earlier. Having more Lyme-literate doctors will mean greater access to medical care for all those affected with Lyme disease.

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Brad Leahy is co-owner and vice-president of Blades of Green lawn care and B.O.G. Pest Control in Annapolis, Maryland.