Commonly known as a tick-borne condition, accurate diagnosis of Lyme disease continues to be a challenge in the U.S. Symptoms that are similar to 350 other diseases is the main challenge with diagnosis based on symptoms alone. Additionally, there are nuances associated with diagnostic testing that can confirm the infection—the tests are not sensitive enough to detect the infection at an early stage. This could lead to a false negative diagnosis.
For Grace Shults, recovery from Lyme disease was incredibly difficult because of the lack of accurate diagnosis. The diagnostic tests that are currently available do not capture every case, resulting in undiagnosed patients who continue to go untreated—being undiagnosed for four years resulted in significant damage to Grace’s body. While a Lyme Literate Medical Physician (LLMP) is key to getting better, they are incredibly difficult to find.
LymeDisease.org has a searchable database of physicians experienced in diagnosing Lyme disease. You do have to create an account (free) to access the database.
“It has been an arduous journey to get diagnosed, and unfortunately, I am still sick,” Grace told Patients Rising. “While I am not as sick as when I [first developed symptoms], I am certainly not better by any means—and I will likely never be fully better again,” she added, emphasizing that it is particularly difficult to face this fact at a young age of 22 years.
Struggles With Diagnosis and Overall Health
Typical symptoms of Lyme disease can vary based on the time that has elapsed after a tick bite. Early signs and symptoms include:
- Fever, chills, headache, fatigue, muscle and joint pain, and swollen lymph nodes
- Erythema migrans (EM) rash, seen in 70-80% of infected individuals
- Rash begins 3-30 days following a tick bite
- Not usually itchy, but may feel warm to touch
- May have a bull’s eye appearance
Later signs may include:
- Headaches and neck stiffness
- EM rashes on other areas of the body
- Facial palsy (loss of muscle tone, dropping on one or both sides of the face)
- Arthritic pain
- Pain in tendons, muscles, joints, and bones
- Irregular heartbeat
- Dizziness, shortness of breath
- Nerve pain
- Shooting pains, numbness, or tingling in the hands or feet
Grace first started feeling sick with flu-like symptoms when she was a junior in high school. “I went from being incredibly active in school, an honor student, and a lively kid, to being bed bound for months.” Despite several visits to multiple doctors and associated lab tests, she did not receive an accurate diagnosis of Lyme disease or any disease at all. The doctors simply encouraged Grace to go back to school.
Finally, after a few years, Grace’s mother found an independent pain doctor who suspected that she had Lyme disease but did not have the expertise to diagnose or treat “that late in my illness.” Instead, he referred Grace to her LLMP, which finally led to her diagnosis at age 20.
Nearly 23 years old now, Grace thinks that while she is closer to remission of her Lyme disease, she’ll remain a lifelong patient of autoimmune disorders—a combination of a late diagnosis and her genetic predisposition. “I advocate and fight for change so that no little girl has to go through what I went through,” Grace says.
Here’s some information on typical treatment regimens for Lyme disease.
Mounting Out-of-Pocket Costs
Since health insurance does not recognize Lyme as a chronic illness, Grace has not been able to find coverage for her Lyme-related treatments, which means that a majority of her treatment costs have been out of pocket—a huge financial burden. “My mother is a superhero single mom, and she always figured out a way to cover costs of things that we had to pay for with money we did not have. However, no patient should have to pay thousands of dollars out of pocket ever, especially when they are insured,” Grace affirmed. “I am grateful for insurance coverage, as I know not everyone has it, but we have a long way to go with that as well.”
Grace’s family has spent around $30,000 to date to improve her health, which includes paying 100% out of pocket for supplements and certain medications. Most LLMPs in the U.S., including her own, do not take insurance and Grace’s LLMP charges a few hundred dollars per visit. She considers herself lucky, though, because consulting charges for some LLMPs may be in the thousands. “The financial strain can make wanting to continue to heal harder. It has made me feel guilty that my family’s resources have had to go to my health,” Grace says, adding that getting medical care should not break the bank.
Currently a senior at the Ohio State University studying Psychology, Grace wants to work in community organizing and eventually go to law school. She likes to host patient support groups with Generation Lyme, and legislative advocacy is her passion.
Surabhi Dangi-Garimella, Ph.D. is a biologist who provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.
Surabhi on LinkedIn
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