Friday, December 3, 2010

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.



Nicole Speaks Out

"This road to health is something I find such a struggle. I get so angry at my loved ones when they cannot comfort me in my pain or when they want me to go out all night as 21 year olds are supposed to do but all i can think is that I'm so exhausted to tears and they don't understand.
How is that even fair? They don't know what it is like to be in pain everywhere to the point where it hurts to paint with a paintbrush that weighs nothing and your muscles feel so weak that that paintbrush feels like its 50 lbs... they don't understand what it's like when I'm sitting there and I feel extreme jolts of electricity shocking my tendons.. how could they? And how can I expect them to empathize when this is something so far beyond anyone who has not been diagnosed with a chronic illness.
Bless their hearts for trying.
" It's not fair, you are strong, just stay strong"
no it's not fair. but it could be worse. yes I AM strong. staying strong is the hard part.. but I will. My mom hasn't given up on our family's health and I wont either and I WILL get better for the sake of my life's quality.. so I can be a young adult for once and experience life the way I want to. And I WILL get better for my mom, I can tell she is so close to being fully recovered.. the light at the end of the tunnel." (http://partoflifespainting.blogspot.com/)


Nicole and her mom.


"Some days I think I am so close to that light, other days, I feel like it's pitch black and I am just L O S T in my own pity and pain. But I am still alive and my symptoms will come and go, and when they come I know that the medicine is working..
I WILL STAY STRONG.
I have always been strong but I didn't know how strong I would have to be for myself. This is a test and it makes me happy to see that I have made progress. I am trying so many alternative options. I'm tired of all the medicine that make me so nauseous I don't even want to indulge in my favorite foods. And makes me so tired I could sleep for days. Every day is a battle.. and soon it will be easier and happier. But how blessed am I that I get to heal with the ocean there to take away my pain and make me forget, and the mountains to look upon and meditate on. I have so many people back home that love me and am finding so many people here I can depend on. It makes my heart smile." 




We love you Nicole and we've got your back!

The ABC's of Lyme Disease

Lyme disease is a nation-wide problem

   The International Lyme and Associated Diseases Society published a brochure titled "Top Ten Tips To Prevent Chronic Lyme Disease". This brochure describes ways to recognize the signs of Lyme disease and ways of preventing yourself from getting it. Here are the top ten tips to prevent chronic Lyme disease:

1. Know that Lyme disease is a nation-wide problem - ticks known to carry Lyme disease have been identified in all 50 states and worldwide.

2. Check your tick facts - ticks can vary in size from a poppy-seed size nymphal tick to a sesame-seed size adult tick. 

3. "Wait and See" approach to treatment may be risky - up to fifty percent of ticks in Lyme-endemic areas are infected with Lyme or other tick-borne diseases. The onset of Lyme disease symptoms can be easily overlooked or mistaken for other illnesses. 

4. Show your doctor every rash - the bull's-eye rash is the most famous, but there are many other types of rashes associated with Lyme disease. 


5. Don't assume that you can't have Lyme disease if you don't have a rash - Lyme disease is difficult to diagnose without a rash, Bell's palsy, arthritis, or meningitis, but you can still have Lyme and not have any of those signs or symptoms. 

6. Do not rely on test results - currently, there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. 

7. Know your treatment options - there is more than one type of antibiotic available, and longer treatment is also an option.

8. Be aware of similar conditions - chronic Lyme disease is called the "great imitator" because it is often misdiagnosed as another condition such as multiple sclerosis, fibromyalgia, chronic fatigue, or anxiety. 

9. Don't be afraid to get a second opinion - it is worth getting a second or even a third opinion, especially if you are symptomatic and your doctor advises not to treat, or symptoms recur or persist after treatment.

10. Finally, Expect success - you should expect to get better!


  The medical community has not agreed upon the one best treatment for Lyme disease. There are many different options and the debate is heated. The Midwest Lyme Foundation is a dedicated group of volunteers who strive to provide community awareness, information, and physician training for the treatment and management of Lyme Disease in the Midwest. On their website they provide information about Lyme disease including various Lyme Treatments: 

- Two schools of thought on Lyme treatment - one is two weeks of treatment for early Lyme, but it does not recognize chronic Lyme, and the other recognizes individualized treatment, based on patient response to treatment. 

- In early Lyme, aggressive treatment with antibiotics is necessary.

- In late Lyme, antibiotics are used and administered orally, by intramuscular injections, or intravenous options, or a combination of all three.


These are just a "few" of the antibiotics that Nicole has to take on a daily basis.


- antibiotics impact beneficial intestinal flora (bacteria) and interact with nutritional supplements and foods, so, it is important to take probiotics as well.

- The use of natural herbs is a time-honored approach to strengthen the body and treating disease.

- Acupuncture may help relieve pain, increase mobility, and reduce fatigue. Chinese herbal formulas, used by many acupuncturists, may help resolve joint, muscular, and neurological symptoms after many courses of antibiotics.






It's time to pull away the veil of misunderstanding...