A rare disease patient’s medical odyssey often begins with a search. Rhisa Perera wrote a narrative in lymedisease.org about her long journey navigating the medical world to find answers and the decade of symptoms when she struggled with Lyme disease before receiving a diagnosis. She wrote,
“In 2009, after a few weeks in Puerto Rico, I came back to New York City and one day I got super dizzy, with a pounding headache. That headache literally did not stop for 10 years.”
Lyme Disease
Lyme disease is a rare disease spread by ticks. The symptoms are caused by the presence of a bacteria Borrelia burgdorferi, which is carried by the vector (usually a tick) and transferred to humans. Symptoms develop progressively, beginning with a fever, headache, tiredness, chills, muscle and joint paint and aches, swollen lymph nodes, and a rash at the site of the tick bite within a month of infection. After, patients may incur more severe headaches, joint pain, dizziness, shortness of breath, general pain and inflammation, arthritis, neck pain, and inflammation in the brain and spinal cord.
Rhisa’s Disease Onset
For Rhisa, her symptoms began when she was 19. She was raised in New York. Her mother had come from Puerto Rico and her father was Irish-Spanish. She had just returned to the US when her headache began. As she searched for an explanation, none left her satisfied. She explored every avenue. She visited her GP and specialists, took all the tests, and began physical therapy. Her doctors couldn’t identify any particular issue, and her labs came back normal. They concluded that her symptoms must be the result of depression and was treated accordingly. Rhisa said,
“I was never examined, never asked any questions, nothing. That is basically how I’ve been treated by every medical professional I’ve ever seen.”
She spent the next decade trying every antidepressant out there, with doctor’s prescriptions unable to adequately deal with her headache. One day in 2019, she struggled intensely to make it out the door because her neck was, as she described, stiff as a board. Rhisa wrote,
“I made it to work but was in such bad shape that my supervisor called an ambulance. The hospital ran the usual blood tests and then told me: ‘Your labs are normal, you’re most likely in pain because you’re depressed.'”
Her periods of vertigo, headaches, and fatigue continued to come in waves. She was planning her wedding between jobs and healthcare, so she powered through with upped antidepressants. By the the summer her body couldn’t keep up. Back in New York, one day she had a feverish wave flash over her:
“Out of nowhere, I felt like I’d been hit by a truck.”
She went to hospital where she was given medicine for pneumonia.
An Accurate Diagnosis
Still, this time she pursued answers to her incessant headaches. The next doctor popped the question, “Have you been tested for Lyme disease?”
Her results came in and confirmed it, giving light to her years of headaches and muscle and joint pain. They prescribed her doxycycline- antibiotics to treat Lyme disease. But by the end of the prescription she was worse than before. Her vertigo prevented her from walking straight and when she returned to the doctors, she was once again told it must be something else. Instead of pursuing a new diagnosis, she looked into Lyme disease support groups on Facebook.
Connecting to the Lyme Disease Community Online
As Rhisa became more informed about Lyme disease, she found out about the complexity of the disease within the medical community. Some don’t believe the disease can be chronic or that treatment will end it. So she knew she needed to find herself a qualified physician to help guide here through. She said,
“When I was finally evaluated by someone who knew what to look for, I found out I had Borrelia (Lyme), Babesia, Bartonella, Rocky Mountain spotted fever, mycoplasma, Ehrlichia, high levels of candida in my gut, Epstein-Barr, and schistosomiasis (parasitic flatworms).”
Now, she manages her symptoms with what she can control- her diet, detoxing, and different treatments.
“It’s tough and I go through periods where I am super angry that it’s taken this long to get some relief. It’s a weird life to live but I’m doing it.”
