Lyme Disease in Hawaii: Nicole's Story

My beautiful and strong roommate Nicole

At 22 years old, my roommate Nicole is living with Lyme Disease. Nicole first started to have symptoms when she was 16 years old. Her symptoms included: debilitating fatigue, inflammation of her joints, and at age 18 she began to have heart problems and cognitive symptoms. Her cognitive symptoms included: moodiness, depression, and anxiety. It became so bad that she had to quit track because the disease made her extremely weak. It wasn't until four years later, at the age of 20, that Nicole was actually diagnosed with Lyme. 

Even though Lyme is mostly attributed with a tick bite, Nicole is one of the rare cases where she was not bit by a tick and she did not show any rashes or visual symptoms of the disease. To this day Nicole is not 100 percent sure of how she came to have Lyme disease. Nicole's parents both have Lyme disease and even though her brother does not have any Lyme symptoms, his test came up positive for Lyme. Nicole believes her mom was born with the disease and passed it on to her and her brother. One of the houses that Nicole lived in had a really bad mold problem that their family did not find until they had lived in the house for a few years. Nicole thinks that the mold in the house weakened her immune system and this is when the Lyme took over. "When the immune system goes down the disease takes over and you can't come back from it," Nicole explained to me. 

In high school, when Nicole began to first have these symptoms, she would just push them aside and not think twice about them. "When you're young you just tend to ignore certain signs because you just think that they are the "pains of everyday life"," explained Nicole about her initial feelings towards her symptoms. It wasn't until Nicole was diagnosed with Lyme that she began to take her symptoms seriously. After high school, Nicole attended Milikin University for one year. Then, she transferred to the University of Hawaii at Manoa. It wasn't until the summer after her first semester out in Hawaii that she found out she had Lyme disease. The following semester after returning to Hawaii she had a really rough time. In the beginning she had a lot of energy and would bike ride and surf everyday, but towards the end of the semester the Lyme began to take its toll on Nicole. She became so fatigued and exhausted, and her grades began to slip because she was too tired to go to class and do her homework. 

Nicole began to take her medicine regularly, but the medicine even had rough effects on her. The Lyme medicine works by trying to kill any infections and bacteria. While it is killing the bacteria it makes the body and mind feel horrible. You start by feeing worse, but in the long run it makes you better. At first, Nicole explained that she was in denial. She pretended like it wasn't real that she had this awful disease. She would skip her medicines to "party" because she didn't want to miss out on things that her friends were doing. This made it harder and harder for her to stay healthy and have strength each day. 

It wasn't until the beginning of this semester, around August and when I moved in with Nicole, that she began to see a doctor out here and she began to take her medicine and treatments more seriously. Beginning in August, Nicole's doctor put her on a strict diet of just fruits, vegetables, and beans for three months. This way her system would cleanse out, and at the end of three months she would begin to start introducing foods again and see what she was having bad reactions too. Not only does Nicole have Lyme disease, but she also has a gluten allergy. 

In the past few months of living with Nicole she has had really bad days and she's also had really good days. There are times when the three of us, Gaby is our third roommate, go to the beach all day and surf for hours at a time. On these days Nicole feels like she can conquer the world. There are also days when Nicole cannot even get out of bed because she is so exhausted and weak. Nicole is one of the toughest people I know to have to live her life based on a day to day battle. When she has her bad days I wish I could just zap away the disease for her because she's in so much pain. This semester she has had two trips to the hospital, an all day visit and a emergency trip to her doctor out here. There is not one standard cure for Lyme disease, and it could take years and years to cure. Nicole says she knows people who are going on eight years of having Lyme with a cure not in sight. 

Recently, Nicole has been having many good days and on Thanksgiving she was able to splurge and eat turkey, mashed potatoes, green bean casserole, and pumpkin pie. As the semester is coming to an end Nicole is looking forward to her family trip to Kauai, and she is praying that these good days continue. In the past few months I have learned so much about Lyme disease from Nicole, and that it is a battle that you have to fight for if you want to overcome it. She's so strong, especially because she is living here in Hawaii with her family and regular doctor about an eight hour plane ride away. 

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Nicole splurging away from her food restrictions on Thanksgiving Day.

Nicole staying strong on one of her better days, enjoying what she loves to do.

Nicole's family and support system.