Capri contracted Lyme disease in May 2011. We never saw a tick but we saw the bull’s-eye rash. We were camping when her dad’s friend pointed out the rash. I actually think the tick bite happened at our house and not while camping. She had been itching that spot for a week. We live in a wooded area and she played outside a lot. She was extremely fatigued while camping, but I just thought that was from the amount of activity and fun she was having. After our camping trip I made an appointment with the pediatrician who put her on several weeks of an antibiotic. We never got a Lyme test since the bull’s-eye rash is the clinical diagnosis. She was too young for doxycycline so she was put on amoxicillin. In the meantime a friend of mine from church had recently been diagnosed with Lyme disease. She was seeing one of the top Lyme doctors in the country and recommended him to us. We managed to get an appointment when the antibiotic treatment from the pediatrician was almost over. We started more aggressive antibiotics and were told it could take approximately a year for the treatment to work.
In the beginning she had so many symptoms – extreme fatigue, joint pain, headaches that felt like ants were crawling in her head, shooting pains, sharp pains, muscle weakness. When first diagnosed, she only had a few more weeks of school (first grade) left in the year. I had to really encourage her to push through and just finish the school year. She had already missed many days of school due to strep throat. Then in her 2nd grade year she missed A LOT of school. I had many meetings with her teacher and school nurse. Though they were compassionate, I don’t think they truly understood. She made good progress with our Lyme doctor that first year. Then in 3rd grade she hit a plateau. She still had severe headaches and sometimes joint pain. She didn’t get worse but didn’t get better throughout third and fourth grade. By fifth grade the headaches got increasingly worse and she had many bad days. Then she hit an all time low when she lost her ability to walk. She completely lost control and feeling in her legs. She needed my help to get around. I had been thinking about switching doctors for over a year. My cousin recommended a doctor in my area. Then a mutual friend, who had a daughter with Lyme disease close to Capri’s age, recommended the same doctor.
When Capri lost her ability to walk, my friend asked me to come to her daughter’s appointment and just sit in. I loved the new doctor. She spent an entire hour talking to my friend and her daughter. They had someone draw blood right there in office and they had an IV area. Lyme doctors are expensive so switching is a big deal and requires lots of thought and prayer. I decided to make the switch and my daughter loved it. Our new doctor was more hands on and more into detoxing, which I think Capri needed. The doctor wanted to see us every 3 weeks. In the beginning she wanted us to get IV’s twice a week. This was very costly. We also ended up getting a PICC line. Capri was diagnosed with POTS and she started seeing a heart doctor and getting many tests. This was also very costly. We drained our savings account. We had several family members help us financially. We reached the point where the family member, who was the biggest financial supporter, told us that he could not keep giving us money. Then the LymeLight Foundation grant came along just at the right time. We are so thankful!
We have been seeing the new Lyme doctor for three years now. Along with her other issues, Capri was diagnosed with a mold allergy. We treated our house and our doctor treated Capri. Capri is getting weekly IV’s. She recently had her tonsils removed. Our doctor thinks an infection was hiding in the tonsils, and removing them would help her have a break through with her healing.
Capri is doing better. She’s continuing to be treated for a mold fungus. Our doctor has cut her back from seeing her every three weeks to every four. She has seen much progress and we are optimistic. She’s still doing weekly IV’s, seeing a heart doctor for her POTS, and an ENT about her tonsils. We are hopeful that she will get 100% better. We have seen so much progress in the past year since seeing this new doctor. We could not have done it without LymeLight. Thank you.