My daughter Sierra is 12 years old. I don’t know when or how she got Lyme. I think she was born with it because it turns out her sister and I have Lyme too.
First, I have to say thank goodness for the internet where I could connect with other parents who were experiencing the same things as we were. They helped guide me and give some direction because our doctors were not helping us. Eventually my search brought us to LymeLight Foundation.
Sierra had her first strep infection at age 11 months old. She had chronic strep, sinus, chest and ear infections throughout childhood. When she was 5 she was diagnosed with sensory processing disorder. Occupational therapy helped manage the symptoms. It was at this time I realized I needed help, there was something seriously wrong with my daughter.
At age 6 she was diagnosed with gluten intolerance. We removed gluten from her diet hoping this would help her separation anxiety, unusual fears, emotional outbursts, and unreasonableness. It helped for a while, but then OCD, pain and unexplained periodic inability to walk began. At age 7, Sierra was diagnosed with PANDAS after a severe reaction to strep. Long-term antibiotics helped, but if she stopped the medication all her symptoms came back. It took 9 years to discover she had Lyme disease.
The medical costs for Lyme doctors who were not covered by insurance and traveling out of state to find them drove up our bills until I could no longer afford to take her or her sister to the doctor. Thanks to LymeLight and the support we found with them, we were able to start Sierra’s treatment again and get her on the right path to getting better.
Through this opportunity we found out she has the MTHFR gene mutation and this has been an important step in her ability to detox which will help her get even better!
After only 5 months of treatment, she sleeps in her room by herself, she gets herself ready for school in the morning, takes showers, brushes her teeth, puts her dishes in the sink, cleans her room and has very little pain. Things are so close to what I think may be normal now.
We still have more Lyme treatment to go and I don’t know what to expect when we switch her treatment plan because I know it is hard to really get over Lyme. But I know we are on the right path.
To all parents of children with Lyme and anyone with Lyme disease, keep trying; keep following your heart and what you know is right. You will find the answers you need. We all know Lyme disease is horrible, but I think Lyme disease brought us together as a stronger family and has made us the people we are today. Don’t get me wrong, I want us all to get rid of it and never get it again!