Growing up in Maryland, Lyme disease is something we’ve all heard a lot about. We know to wear bug spray, check for ticks, and look for the telltale bullseye rash. What we don’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 an estimated 10% of patients can’t be cured by the normal regimen of antibiotics. For most, if the disease is caught early, symptoms are resolved after a two to four-week antibiotic treatment. I, unfortunately, fell into that 10% that couldn’t be cured by the normal treatments.
It seems 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, and one instance to be infected. That one instance happened around October of 2013.
Struggling to Find A Diagnosis
My story is far from traditional when it comes to Lyme disease. When I first contracted Lyme, I was going through recovery for a back surgery when I 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 from the surgery. As my back recovered, it got harder and harder to blame my symptoms on the surgery.
I began to develop other symptoms; 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 week to two weeks where I received a different diagnosis every visit for what my symptoms could mean. It wasn’t until March of 2014, nearly six months later, that I was finally tested for Lyme. Never having the traditional bullseye rash, it never crossed my doctor’s mind that I could have Lyme. According to a survey done by LymeDisease.org, only 17% of survey participants had the classic bulls-eye rash.
I got the call saying, “The Doctor wants to see you in the office right away,” and finally had a name to put with my symptoms - I had tested positive for Rocky Mountain Spotted Fever and potentially two other tick related disease. I soon found out, however, that 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 when I got my diagnosis. I thought, “Now we can finally begin treatment and I can feel better.”
I was put on a 20-day treatment of antibiotics, the normal diagnosis, and then started the second round of antibiotics for 30 days when the first cycle didn’t work. 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). There are a limited number of LLMDs in the United States.
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; I started a different regimen of medications. My doctor prescribes me a different assortment of antibiotics and supplements where I monitor clearly over the following months how I feel. Then I go back; we assess how it worked and 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 luckily enough to have a great staff that not only accommodated but helped and continues to help me throughout my treatment. **Part of missing work was from side effects from medication**
At some points in my treatment, I was taking over 50 medications a day. Although I’ve been able to taper off more recently, medications and doctors appointments are something I, along with the rest of those with chronic Lyme diseases, will be dealing with the rest of my life.
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. While there is a lot of awareness about ticks and Lyme disease in the general population, I feel that doctors and medical care are where we can make the biggest gains. We lack medical professionals that can think outside the box when it comes to Lyme.
The 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. I am lucky enough to live just an hour away from a Lyme specialist, but there are only a limited number specialists in the country. That means most have to travel long distances just to be seen. Beyond the travel costs, most LLMDs don’t take insurance, meaning patients with chronic Lyme disease often have to spend upwards of 10 to 12 thousand 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. According to a survey done by LymeDisease.org, 61% of 6,000 survey participants with Lyme disease took over two years to receive a diagnosis.
With better awareness in our medical staff, we can help identify and treat Lyme earlier. More Lyme Literate doctors means greater access to medical care for all those affected with Lyme disease.