Syracuse Native Battles Lyme Disease, a Common Foe that Doctors Couldn’t See

It is Easter. Monique Villani finally manages to drag herself down the staircase from her room to the dinner table. Her fingers are so swollen that she can’t bend them. Her mother cuts her food for her. She’s 22 years old.

Today it was her hands. Tomorrow it will be her knees, her neck, and her arms. She was only able to spend an hour with her family during the holiday — she needed to go back to bed, maybe that would make it better. Her pain was excruciating.

Lyme disease is the most common infectious disease in the United States to be reported, according to the Center for Disease Control and Prevention. Lyme disease is usually contracted after getting bitten by a tick, and some of the most common symptoms include fevers, headaches, fatigue, and a skin rash. Just in 2017, there were 29,513 confirmed cases of Lyme Disease in the United States — 3,502 in the state of New York, which is third in the number of cases right after Pennsylvania and New Jersey, which had 9,250 and 3,629 cases respectively.

Villani first got sick in August of 2018. Her “flu” was not going away. The former law student at the University of Albany took a midterm with a 104.7-degree fever. “It’s law school, you have to take every exam,” said Villani, laughing.

Soon after, her mother drove from Syracuse to Albany to take her daughter to the emergency room. That was the start of a long and arduous process until doctors gave Villani an official diagnosis in April of 2019: Lyme disease.

Lyme is a fairly common disease to get, especially during the summer months and in Central New York. This is why when the doctors could not figure out what was wrong with her, Villani’s friends kept saying that she should get tested for Lyme disease, as the timeline of events would make sense. Villani and her mother asked multiple times.

“We asked like four times, ‘Have you tested me for Lyme?’ and we were told, ‘No, you don’t have Lyme’ by people at the hospital when I was admitted in October,” Villani said.

It was the hospital, the infectious disease doctor, rheumatology, and then immunology. Doctor after doctor told her she did not have Lyme disease, but they could not offer her an answer for what was happening.

Villani would not know that she was never tested for Lyme after requesting it multiple times until she went back to Albany Medical in June to ask for her medical records — specifically the test for Lyme — and the staff told her they could not find any records of that test.

As part of the quest to find out what was happening with Villani, doctors at Albany Medical made her see a cardiologist and check if there was anything wrong with her heart since her symptoms included lightheadedness. There was nothing wrong with her heart, but the cardiologist recommended her to go to the Stram Center for Integrative Medicine in Albany.

It was there where Villani finally gets listened to. Medical practitioners ran the blood tests needed to check for Lyme. Sierra Garrett, a nurse practitioner at the Stram Center finally gave Villani and her family answers after months of dealing with two misdiagnosis and incorrect treatments.

She was still one of the lucky ones. Because she was diagnosed within the first year after getting infected, Villani’s Lyme can be cured according to her and her mother. This is not the case for everyone. The CDC’s website says that most people can get cured in 6 to 8 weeks with antibiotics but will still feel unwell for months. But Villani said that some people she has met during Lyme treatment have been dealing with the symptoms for over 20 years.

“It’s definitely changed me as a person,” Villani said. “I used to be a lot more positive and energetic and happy. It’s so depressing because it’s like, I can’t do anything, and what did I do? I did nothing.”

two women in grocery store
Villani with her mother, Regina Villani, as they walk through the grocery store in search of doctor-approved snacks. Photo by Rocio Fortuny.

Villani has been diagnosed with one strand Lyme disease and five other tick-transmitted diseases. These bring a variety of problems to Villani. For example, she suffers from memory issues now — something that never used to happen before getting sick, as well as extreme lightheadedness.

Surprisingly, Villani was told that she was bitten by a baby tick, but was ever able to find it or remember getting bit.

There are days when the joint pain, the swelling, the rash, and the lightheadedness are not that bad, and she can go grocery shopping with her mother. Other days, she is bed-bound in her house. Even telling me her story is hard — her memory tricks her and sometimes, she is not sure of specific dates or names.

Being diagnosed with one strand of Lyme disease means that under the CDC standards, she does not have Lyme — the requirement to be diagnosed is to be infected with two strands of Lyme.

Villani said this means that she won’t get medical insurance coverage for her treatment, medicine, and doctor’s appointments. So far, she and her parents have spent over $15,000 dollars out of pocket.

“I’ve maxed out everything, and that’s not even all of it,” said Villani’s mother, Regina Villani. “We still owe the doctor and we still owe the hospital. It’s really easy to just not answer your phone anymore.”

As a Syracuse native, Villani attended Nottingham High School. There, she met Deanna Eure during their freshman year, and the pair later became best friends. After Villani told Eure she was sick, the longtime friends were able to bond even more as they now shared similar experiences.

When they were in high school, Eure went through a situation as Villani’s — she was sick and getting a diagnosis and treatment was challenging. Villani was with her through that process, and now it is Eure’s turn.

“It is frustrating to see her put her life on hold and put her dreams on hold because of this diagnosis and this disease that she’s been facing,” Eure said. “I mean, she still tries to smile through it, but you can tell some days it’s hard on her.”

Now, a girl who wanted to go to law school to help others and make the world a fairer place, who liked reading and staying indoors to avoid the sun and mosquitoes, has no other options.

Villani’s allergies make it hard for her to follow the treatment given to her by her doctors and recommended by the CDC.

She’s going into the next eight weeks of treatment, and she feels better. She hopes to come back to school in January even if it means becoming a part-time student to work towards getting her law degree.

“The only thing I foresee stopping me is my brain because it’s not even where it used to be. I was never the best at remembering things but now I seem to make a lot of false memories,” Villani said.

Today, Villani only needed a cane to walk. She was capable of taking part in the grocery shopping trip, and she was able to bend her fingers.