Tell us about your diagnosis…
As a carefree junior in college I couldn’t possibly imagine worrying about anything except my next test and my social plans. As I slowly became plagued with crippling arthritic symptoms in my hands and arms, blinding migraines, flu-like symptoms, swollen glands, chest pains and more, I could not understand what could possibly be wrong with me. My journey with tick-borne illnesses is sadly very similar to that of many other sufferers. Over the next two years following the start of symptoms, I visited dozens of specialists to try to find an answer. Each doctor referred me to yet another doctor who might be more equipped to deal with the mystery illness. Some doctors even told my mom to send me to a psychiatrist in case I was creating these symptoms to seek attention. I wasn’t. I pushed my way through junior and senior years of college, often dragging myself to classes and forcing myself to get through school.
With my mom continuously by my side, I finally made my way to a cardiologist who asked if I had ever taken a Lyme disease test. I had never even heard of Lyme disease at the time. Fortunately, my test came back positive. Many people, however, have tick-borne illnesses and show negative blood test results, as current tests are 55% inaccurate. Naturally, such false negative results makes receiving a correct diagnosis for those Lyme sufferers even harder. I thought now that my illness had a name, the treatment would be easy. I was wrong. Like most ticks, the tick that had bitten me carried a host of co-infections, making treatment and recovery even trickier. My journey to wellness was a long one fraught with frustration and worry. With the help of different Lyme literate physicians, I ultimately came up with a combination of eastern and traditional western treatment options to see which one would hold true, which one worked best.
As my health started to improve, I met my husband, Rich, through a mutual friend in New York City. As we talked about having a family, I feared that these diseases would be transmitted to my children—thanks to medication taken during pregnancy, they were not. I went on to have three children and in 2001 my husband and I decided to start the Turn the Corner Foundation. Our goal was to increase education and awareness of Lyme and tick-borne illnesses. In 2015, Turn the Corner merged with the Lyme Research Alliance and we morphed into the Global Lyme Alliance. Throughout my tenure, I particularly enjoyed seeing the long-term effects of the awareness, physician training and education programs that I spearheaded, which enabled doctors worldwide to learn firsthand about tick-borne illnesses by studying side by side with Lyme literate doctors.
Although even today, I still deal with some of the symptoms from Lyme disease, I feel extremely fortunate that this journey has led me to meet and help so many other passionate people all around the world. I am grateful that I have had such tremendous support from my family and friends throughout my illness and that everyone showed such eagerness to help us from the moment we began the foundation 16 years ago, dedicating much of their personal time and energy toward the cause.
Why is Lyme disease difficult to detect?
Lyme disease can be difficult to diagnose for a multitude of reasons, including:
- There is no accurate diagnostic test. The common diagnostic tests are 55% inaccurate, so many people who test negative may in fact have Lyme. This leads to high rates of patients being misdiagnosed and left untreated. And as many as 20%, even if they were properly diagnosed and treated early, continue to suffer persistent illness.
- Ticks are tiny! Most people who get Lyme don’t recall ever seeing a tick. Deer ticks can range in size from a 1.3 mm (nymph)—roughly the size of a poppy seed— to 3.7 mm, a full-grown female.
- Ticks are stealth. Ticks possess a substance that numbs a person’s skin, which may explain why many people never feel a bite.
- No rash may appear. Fewer than 50% recall seeing a rash of any kind, let alone the classic “bulls-eye” rash associated with Lyme.
- Hundreds of possible symptoms. Lyme shares a multitude of symptoms with other illnesses, such as fibromyalgia, rheumatoid arthritis, lupus, MS, and ALS, to name a few. This is why Lyme is called “The Great Imitator” for its complexity and contributes to the difficulty and delay in receiving an official Lyme diagnosis.
- The lack of Lyme-literate physicians. Early stage Lyme disease is widely accepted by most physicians, especially if there is a clear bulls-eye rash, the patient has the tick or recalls the tick bite. However, the lack of a reliable diagnostic test, conflicting definitions of Lyme, and its many symptoms, may puzzle healthcare providers, causing them not to review Lyme dis-ease as a viable diagnosis. Lyme-literate providers, on the other hand, will look at the entire health picture and environment of a patient before making a final clinical diagnosis.
Without an accurate diagnosis, thousands of patients are left without effective therapies while symptoms worsen, and while those around them question their illness, often including physicians not well-versed in tick-borne diseases.