REAL LIVES. REAL STORIES.

“I work in a busy Emergency room and I can promise you that if a patient states that they have Lyme disease they are quickly and easily dismissed as insane, drug-seeking, or hypochondriacs. I have seen many highly educated and hard working people taken down and their careers and family lives destroyed by this bacterial infection that should be easily treated but isn't.”

Female, 45, WA

“I was at the top of my game at my occupation of 36 years. I rode and raced, and typically came in the top five in mountain bike races. I don't race, barely ride—sometimes don't get out of bed. I no longer work in my industry and I am scraping to get by. Nobody understands my problem. I have lost my personality and I certainly am not the same person I was two years ago because of Lyme disease.”

Male, 58, CA

“I went from being a happy, functioning teacher and mom of two girls. It took over two years, extreme persistence, and over twenty doctors to determine that I had Lyme disease. Everyday I wake up with pain that limits my ability to be the type of mother that I was prior to getting ill. This is a serious endemic that gets dismissed by doctors due to inaccurate testing and misinformation.”

Female, 35, CA

“I'm a 17 year old athlete who never missed school. But, I have been unable to be in school for the last 1-1/2 years because of Lyme Disease and the 3 co-infections I have. It's so unbelievably hard to have your life ripped away from you because of one tick bite that escalated into something that could have been prevented. I've had to sit on the sidelines and watch my peers move on with their lives.”

Female, 17, NJ

“I'm the one devastated by this disease, and the truth is, you don't know for certain how to treat it. With a condition fraught with so much uncertainty and unknown, the most we can be offered is the state of all available knowledge (even if they oppose each other), access to (and insurance that covers) all treatment approaches, and the freedom to make our own choices.”

Female, 51, OR

“A patient is the best source providers have to what is happening inside the patient's own body - it is imperative that each patient have input into his or her individualized treatment plan. Patients are the experts of this disease not the physicians. It is so important that they are listened to and taken seriously, or we will never come to better understand this disease in all its complexity.”

Female, UT

"I listened to a CDC seminar on persistent Lyme. I was amazed at the researchers finding results that it does exist. I was more amazed, that at the end of the seminar, one researcher wanted to discredit all the great info. It was pathetic. Like AIDS in the 80s‐90s people had to meet in parking lots to exchange antivirals. What a disgusting mess.”

Male, 55, TX

“I've made significant progress with individualized treatment, but I have had to FIGHT for it every step of the way and it has cost me my dream job in NYC, my retirement, my savings, and my social life. Lyme patients deserve better advocates in the medical field.”

Female, 31, IL

"I am functioning but my life as a typical teenage boy does not exist due to Lyme disease. My parents spent $15,000 to get me back on my feet. My cardiologist wouldn't let me go to school for 9 months. Please take this disease seriously, encourage more doctors to become LLMDs & demand insurance companies to cover Lyme disease treatment.”

Male, 16, CT

“I was a firefighter for 23 years. Lyme has changed who I am. I got Lyme from fighting forest fires. I hurt everyday but nobody wants to hear that.”

Male, 40, Oregon

“Please do something about the faulty testing for Lyme disease by the CDC. The numbers of people suffering from Lyme is rapidly growing. It is maddening that the CDC wants to turn their back on us. Faulty testing and limited physician training to recognize Lyme is the reason I'm in this situation.”

Female, 48, Florida

LYME DISEASE STUDIES FOR THE
People That Matter The Most — PATIENTS

THE STUDIES

What We Do

For more than ten years, LymeDisease.org has been conducting patient surveys to bring the perspective of patients to the forefront.

Why We Do It

We give voice to the Lyme patient community. We publish the results of our surveys either in peer-reviewed journals or as reports. We share that information with lawmakers, journalists, and others in the healthcare arena. Some of our surveys have drawn more than 9,000 responses.

MyLymeData is LymeDisease.org’s new survey tool that tracks patient progress over time

LYME DISEASE STUDY HIGHLIGHTS

Quality of Life

This study examined health-related quality of life using standard Health Related Quality of Life questions from the Centers for Disease Control and Prevention and other government agencies to compare the quality of life in Lyme disease patients with the quality of life of people in the general population and people with other chronic illnesses. It found that chronic Lyme disease is associated with a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. It also found that patients visited the emergency room, had more physician visits and more overnight stays in the hospital than the general population. Many patients were unable to work or to concentrate while at work. This study was published in PeerJ, a peer-reviewed journal in 2014 and has been downloaded over 4,000 times.

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Access to Care and Burden of Illness

This study looked at the difficulty that patients have receiving diagnosis and treatment. It was published in Health Policy in 2010. It revealed that 65% of patients with chronic Lyme disease have had to cut back or quit work or school and 25% have been on disability.

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IDSA Survey: Real Lives/Real Stories — Outcomes important to Patients.

On March 24, 2015 LDo launched a survey focusing on which outcomes were most important to Lyme patients. Over 6,000 people responded. Patients contributed personal stories about how Lyme disease affected their lives and provided insights into their values. The comments were submitted to the IDSA during its guideline comment period.

One patient said: I’m the one devastated by this disease, and the truth is, you don’t know for certain how to treat it. With a condition fraught with so much uncertainty and unknown, the most we can be offered is the state of all available knowledge (even if they oppose each other), access to (and insurance that covers) all treatment approaches, and the freedom to make our own choices.

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FDA Survey on Lyme Diagnostic Testing.

In January, 2015, we conducted a survey on the Food and Drug Administration’s proposed restrictions on Lyme testing. We included survey results when we talked to the FDA about how much the proposed regulations would harm Lyme patients. Notably, patients were unhappy with the poor quality of currently available testing, and feared they’d be even worse off if the FDA restricted the development of new tests. They were more concerned with under-diagnosis and treatment delays than the possibility of a false positive test result.

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