Wednesday, May 23, 2012

Lyme Disease Awareness Month: Jake's Story

Lyme Disease is one of the fastest growing infectious diseases in the nation. It is caused by the bite of a tick infected with the bacteria Borrelia Burgdorferi, and poses the highest risk to children ages 5-14. Contrary to some opinions, Lyme Disease does exist in Florida. Read below to educate yourself on methods to recognize, prevent and treat the disease. Then read about Jake, an 8-year-old Floridian who, with his parents, faced an enormous struggle not only in combating the disease's devastating effects but in finding a doctor to properly diagnose it.

How to Recognize the Symptoms

Early symptoms can be flu-like and some people may develop a bulls eye rash. While a rash is unique to Lyme Disease, it is not always present. Later symptoms can mimic illnesses such as Arthritis, Lupus, Multiple Sclerosis, Parkinson's and Lou Gehrig’s Disease (ALS). Lyme Disease is often misdiagnosed.  Many victims do not remember being bitten by a tick and have no history of tick attachment.

Simple Ways to Prevent Lyme Disease
  • Avoid likely tick-infested areas such as wooded, bushy areas or places with high grass and leaf litter. If you can't avoid these areas, ensure your children are sprayed with insect repellent containing DEET, covering both their clothes and exposed skin. Dress them in light-colored clothing, including a hat, long sleeves and pants. Tuck their shirts into their pants and their pant legs into their socks. Before going indoors, perform a tick check on your children, as well as yourselves.
  • Have your pet vaccinated for Lyme Disease or use medication that will prevent tick bites. Consult your veterinarian for more information. 
  • Add a tick preventative to your monthly lawn service. Remember that knowledge is power. We protect ourselves from the harmful rays of the sun by applying sunscreen. Take necessary precautions to prevent tick bites that could result in Lyme Disease!  
What to Do if You Find a Tick

  • Remove it. Use fine-tipped tweezers to grasp the tick as close to the skin’s surface as possible. Pull upward with steady, even pressure. Avoid twisting or squeezing. Remove any parts of the tick that remain in the skin with your tweezers. 
  • Save the tick!! Place it in a plastic bag with grass, leaves, or a moist paper towel. Label the bag with your child’s name, site of the bite, and how long the tick was attached. Store it in the refrigerator until you can have it tested by a lab, health department, or a veterinarian.
  • Clean the site of the bite and your hands with alcohol, iodine, or soap and water. Also, contact your child’s pediatrician. 

For more information, visit the Northeast Florida Lyme Association website at or call (904) 631-6536.

Jake's Story -- by Dave and Amy Alex

Our son Jake was diagnosed with Lyme Disease last year. We learned a lot and hope that by sharing his story, we can provide information about this disease that empowers other parents.

“Hi, my name is Jake and I have Lyme Disease. I am eight years old and attend Beaches Episcopal School in Jacksonville Beach, Florida. Until last May, I was a typical, happy, and energetic kid. But all of that began to change at the beginning of last summer. I was really tired all of the time and did not want to do anything but lay on the couch. It was a different kind of tired, not sleepy, but just exhausted. I had what my Mom called a low grade fever every single day and sometimes my head, knees, and ankles would hurt. 

I spent my summer mostly in different doctor’s offices. I had a lot of blood work done, which I really hated. But, my Mom got some cream that made my arm numb so that I could not feel it. I had lots of procedures done like x-rays, something to look at my heart, some other thing where they stuck wires all over my chest, and they used some thing to run all over my body and I could see these pictures on a screen. I hated that, too. I would have rather been at the pool, but really I was too tired anyway. I  had to quit the swim team because it started getting too hard for me to swim the length of the pool. 

My Mom and Dad kept taking me to different doctors because they said no one could find anything wrong. If there was nothing wrong with me, why did I feel so rotten? I couldn’t even walk sometimes because I was so tired and my Dad would have to carry me places. I had to ride in a stroller on the way home from the beach one afternoon in front of my friends because my ankles hurt so badly. And my house isn’t that far from the beach! I just wasn’t getting better and I was tired of being sick ...”
Every physician that examined Jake last summer asked if we had been camping. When we responded, “Yes, Jake and his Dad camped with the Cub Scouts in Hastings in late March,” Lyme Disease was quickly dismissed because, “Lyme doesn’t exist in Florida.” Jake’s blood work was unremarkable for signs of autoimmune diseases and cancers. Because everything looked good on paper, he was diagnosed with a viral syndrome and chronic fatigue that would resolve in six months. But, otherwise he was a perfectly healthy boy. Meanwhile he continued to deteriorate. As parents, we knew in our hearts that something was terribly wrong with our child and that the doctors were missing something. At one point in July, he presented so badly that we truly felt like he was dying right before our eyes. But according to his doctors, there was absolutely nothing detrimentally wrong with him. We felt the doctors thought we were crazy.   

A breakthrough came when a friend took it upon himself to do some research and, feeling very strongly that Jake had Lyme Disease, convinced us to find a Lyme Literate Doctor. We were fortunate to find one, who determined after further testing and evaluation that he did indeed have the disease. Jake immediately began aggressive treatment, both Western and alternative therapies, and has made remarkable progress. Had more time passed without a diagnosis and proper treatment, his excellent prognosis would have been drastically different. It has been a roller coaster recovery process. The Jake before Lyme Disease emerged with his boundless energy. His full of life personality shone through once again. We still continue to manage his disease, but we hope that one day he will be Lyme free! 

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