Chronic Lyme Disease (CLD) Patient Stories: 3 Things Everyone Needs to Know About CLD From Someone Who Has It Opinion

I didn’t realize it at the time, but a split-second faint while stepping onto a bus in 2000 would become a turning point in life. I was 25 years old and suddenly found myself weak, lethargic and unwell – and, unlike most others in their 20s, I couldn’t shake it.

Sixteen years, hundreds of doctor appointments and what feels like thousands of questions later, I finally have an explanation for why I could not recover from those feelings of malaise. Sixteen years later, my way of life changed because it was affirmed that I was living with chronic Lyme disease (CLD).

To understand what it is like to live with CLD, you must first understand what it is. Lyme disease is transferred from a tick carrying a bacteria called Borrelia burgdorferi. Typical symptoms include fever, headache, fatigue and a characteristic skin rash called erythema migrans.

CLD is not formally recognized by the Centers for Disease Control and Prevention (CDC), and is not well understood by the medical community. So while I expected that I would be met with feelings of relief and understanding after being given a term to define my condition, my diagnosis left me with far more questions than answers. In the 19 years since my fainting episode and the three years since my diagnosis, I have had to make significant lifestyle changes to manage my symptoms and disease. I have now spent half my life fighting what sometimes feels like a losing battle. I am constantly seeking understanding, awareness, expertise and care in an area of medicine where even the breakthroughs seem to produce more questions than answers.

Day after day, doctor visit after doctor visit, I have almost become numb to explaining my diagnosis to others. I have lost track of how many doctors have been unable to provide answers, how many friends cannot comprehend my diagnosis despite my attempts to explain, and how many colleagues question why my desk is empty from time to time. The fact of the matter is: CLD is not that simple. In an effort to provide some education and color to this commonly misunderstood disease, I present to you this, an open letter about my experience living with chronic Lyme disease:

Three Things to Know about Chronic Lyme Disease

1. It could take years to get a proper diagnosis.

You may already know that Lyme disease is notoriously difficult to diagnose using conventional techniques and the variety of symptoms that patients can present with.

If you ask about the accuracy of Lyme disease detection, you will get a variety of answers. Some physicians say a positive test result cannot be obtained until antibodies to fight Lyme disease bacteria have developed, about four to six weeks after the initial infection. Others say that these tests may never show as positive given the nature of the Lyme disease bacteria, and its ability to “hide” from the bloodstream and stow away in our brains, joints and other places.

My experience perfectly illustrates how difficult it is to obtain a diagnosis for Lyme disease. You may be wondering what happened between 2000, when I fainted stepping on to that bus, and 2015, when I was finally diagnosed with CLD. In 2000, it was determined that my symptoms were a result of an autoimmune disorder called Graves’ disease. For 15 years, every symptom I’ve had, whether it aligned with common symptoms of Graves’ or not, was blamed on this diagnosis.

I visited countless doctors trying to explain what I knew: Graves’ was not the answer. Despite my attempts, it seemed each doctor grew more persistent than the last in convincing me that I the symptoms I experienced were the result of Graves’. I was told to make lifestyle changes and to be prepared for how difficult it would be to have children, based on this diagnosis.

What I now know for a fact is that my symptoms are due to chronic Lyme disease. To be honest, I never suspected it was Lyme disease, so it was hard to believe the diagnosis of CLD when it was finally made. By January of 2017, I was presented with indisputable evidence. A doctor I visited showed me what my blood looked like under a microscope, and it was clear as day – it appeared as if tiny bugs were crawling around my blood stream. While this experience may sound terrifying to some people, I finally knew I had the proper diagnosis.

2. Chronic Lyme disease is a lifelong, uphill battle. It is not well understood, it comes with debilitating symptoms, and it requires a special type of physician to treat.

The number of people diagnosed with Lyme disease each year in the United States is around 300,000. The number of those that suffer from chronic Lyme disease is estimated to be between 5 and 30 percent of total Lyme disease cases, which is to say that it is not fully understood how many people are impacted by CLD. Despite this, people like me are living with this disease, and the oftentimes debilitating symptoms that come with it.

People living with CLD experience a wide array of symptoms, from insomnia, food and exercise sensitivities, extreme exhaustion, caffeine, sugar, and dairy. For me, it has felt like pushing myself one way or the other too far on any given day can throw my body completely out of whack. Now consider that despite these debilitating symptoms, CLD patients access to doctors who can help them combat these symptoms is limited.

Insurance won’t cover it. Those of us who have the resources to pursue the right care, seek out “Lyme Literate” Physicians, or “LLMDs.” But finding a trustworthy LLMD can be difficult, because there simply aren’t that many of them. In the event that patients can identify an LLMD close to home with expertise in treating Lyme disease, it can easily become cost prohibitive to follow up with that doctor. Initial consultations range from $800 to $2,000, with each follow-up visit costing anywhere between $300 to $500. For many people, even an initial consult can price them out of obtaining treatment.

3. Chronic Lyme disease deserves more attention and awareness.  

With thousands of people estimated to be living with CLD, and the increasing number of Lyme disease cases every year, it’s clear that more answers are needed from the medical community. Beyond that, I believe it is more important than ever that our communities raise awareness and direct attention and focus to chronic Lyme disease.

The diagnosis of CLD has deeply affected my mental health, my well-being, and my quality of life. It has also impacted by husband, children, family and colleagues – and so much more. I still live every day with the intensity of symptoms of CLD, and it is likely that I will have further health complications as I age because of this diagnosis. I cannot tell you how much easier all of this would be if I felt my disease was truly understood by my community and society as a whole.

For those wondering how they can help, a strong start would be simply listening to and believing in these patients with CLD – and knowing that it is a reality for many, even if you don’t agree with the facts. It has been four years since my diagnosis, and now, I’m ready to speak up, speak out and be an advocate for the chronic Lyme disease community. I hope you will join me in doing the same.

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