The summer in between my 1st and 2nd grade year, when I was 6, I was bitten by a tick in Missouri. We did not see the tick and I did not have the “bulls eye” rash that happens in about 50% of people bitten by Lyme-carrying ticks. Those 50% are very lucky because you go on antibiotics for 30 days and it gets rid of the Lyme disease.
When my 2nd grade year began, I started having body aches, brain fog, headaches, tremor in my right hand, and I started blacking out. I felt horrible and it was very hard to get out of bed. My 2nd grade teacher noticed that something was wrong in October. I think the blackouts scared my teacher and my parents the most, and they all agreed something was wrong with me.
My parents took me to over 50 doctors. I had MRI’s, cat-scans,spinal taps, EKG’s, EEG’s, a liver biopsy, upper and lower endoscopy, I had my adenoids removed, and over 100 blood draws. I spent a week in the hospital. I was misdiagnosed with Wilson’s disease but the biopsy showed otherwise. Later, the doctors thought that maybe I was making this up. This went on for 18 months. My 3rd grade teacher would call my Mom and say that Icouldn’t lift my head off my desk, so they were letting me lay down to do my math. All my teachers would beg my parents to figure out what was wrong with me, and as my Mom tells the story, she would get off the many phone calls and cry because she didn’t know where else to take me, but knew that I was very sick.
Finally, another doctor did more tests and took the time to see what theother doctors had missed. On Jan. 29, 2013, I was diagnosed with Lyme disease. This doctor put me on 30 days of antibiotics and said I would be back to normal. By the 5th day of being on the antibiotics, my Mom said, she saw the twinkle in my eye that had been missing for 18 months. I felt much better and my 3rd grade teacher called my Mom and said, “I just met Olivia for the first time, and she is really funny.” They both started to cry.
Unfortunately, after my 30 days of antibiotics were over, I started to nose dive again. My parents knew they needed to find a Lyme specialist. My Mom’s friend knew a boy who had Lyme disease and was seeing a Lyme specialist. He had a two year waiting list, but after he heard that I had only been sick for 18 months and how young I was he took me on as a patient. The Lyme doctor found that I have 2 co diseases. Ticks can carry hundreds of other disease like West Nile Virus and Rocky Mountain Spotted Fever. I have bartonella and babesia. I now take 6 antibiotics, 1 anti malaria pill, lots of gross supplement drops and probiotics. I do this every morning and every night. I definitely started feeling better. But Lyme disease is a weird disease because you think you are doing great one day and then you can’t get out of bed the next. We call those “Lyme Days,” I use to have a Lyme day every day, then it went to a couple times a week, then a couple times a month. Now, after 6 years of having Lyme disease, and after 4 ½ years of treating my Lyme, I am down to about one Lyme day every 6 weeks.
A “Lyme day” is where my body just shuts down and all of my symptoms come back. My muscles and joints hurt, it feels like I have the Flu, and sometimes my eyesight is affected. So we are always changing my medicine.
Last April, I was told that I would have Lyme Disease for the rest of my life or until there was a cure. It was hard to hear and I was very sad. My parents promised me, that for the rest of their lives, they would always help me with my battle against Lyme.
I decided that I need to do something to help find a cure for Lyme so I started my own nonprofit called the LivLyme Foundation. My mission is to raise money to help children that cannot afford their Lyme medicine and to give money for research to find a cure. We have met a lot of families that cannot afford the Lyme drugs and Lyme doctors for their children because most insurance companies will not cover people with Lyme disease. So I would like to help children with Lyme. There is also great research going on to find a cure, and new drugs for Lyme and I think my foundation can make a difference.
Please remember that ticks do not discriminate. Ticks are in every state and can cause disease and infections in anyone. While Lyme disease is most often found on the east coast, Midwest, and pacific northwest, there are cases of Lyme disease in every state because we travel and ticks can travel too. It is the fastest spreading vector borne illness in the US. Lyme is also found on every continent. 200 children a day are diagnosed with Lyme disease.That is 4 school buses of children a day diagnosed with Lyme. 350,000 people are diagnosed every year with Lyme in the US. Most people are misdiagnosed 3-10 times. It takes usually 5-15 years to get a correct diagnosis. 40% of Lyme Patients end up with long term health problems. We are ALL one bite away from getting Lyme Disease. It is a huge epidemic and we need to do something about it. I know the LivLyme Foundation can help kids and find a cure.