After hours of being asleep and unable to speak, she finally came back to herself. Like nothing had happened to her just hours before. We left the hospital to go home having no idea what just happened. Was it going to happen again?

Over the next few months, we visited multiple neurologists and other specialists with zero answers except epilepsy! We were baffled because there was no family history of epilepsy. We were told, “Here are some pills to take, see you in three months.” They didn’t warn us how those pills make you feel and that they may not even work! No blood tests, no further exams or testing. Bella developed this overnight and this was now her life. Something in my gut told me there had to be more to it…

We took a leap of faith and met with a holistic doctor who immediately suggested Lyme disease. I’ve never even seen a tick on my girl, but I was willing to test for it. We tested her hormones, vitamin levels, genetics and everything you could think of. To our surprise Bella’s test came back positive for two variants of Lyme disease. Holy cow! We had our answer finally. I thought antibiotics will fix her up, no worries!

Bella started treatment. Within days, she was so sick, she couldn’t get out of bed most days. She was so tired she couldn’t lift her head, her body ached all over like pain she’d never known before. Her seizures increased to almost daily—sometimes multiple times a day for hours. She suffers from multiple kinds of seizures, myoclonic seizures (body jerks like electric shocks that are uncontrolled) atonic (drop attack) seizures and full grand mal seizures. Each different and with no warnings. Bella was scared, sad, depressed and sick.

She delt as best she could, trying to be normal, trying to be a kid, trying to dance like everyone else. Emergency Room visits became a normal part of her life. Bella had to go from being an independent teen to having to be treated like a toddler all over again for her safety. Every morning, we had the same routine. She woke up and waited in bed for an hour to see if she would have a seizure or not, then I would walk her arm-in-arm to the bathroom to go to the bathroom, brush her teeth, get dressed. Walking downstairs by herself, forget it!

Months went by and Bella continued to get worse. We did more testing we found she had mold mycotoxins in her body and neuroinflammation, called Autoimmune Encephalitis. She took 17 different pills every morning and night and was not any better. We start treating the brain inflammation with IV steroids, followed by five months of high dose prednisone. We started to see some improvement. We were so hopeful we had finally started to see her getting better. Bella had to deal with body image issues from the steroids that made her gain weight and changed her appearance. People who knew her and saw her would ask her why she looked weird.

Bella was then diagnosed with a tick-borne Bartonella. Overnight, she developed these large dark reddish purple stretch marks like rashes all over her body that itched like crazy. They changed and grew daily until they took over her entire body. She faced insecurities once again.

Bella had to deal with brain complications from the inflammation like forgetting her words, not being able to complete a full sentence, loss of balance issues and memory problems. We still had zero help from any doctor other than the holistic one.

She lost all her school friends because she had to leave school and start homeschooling because she was so sick. She missed every social event, like birthday parties, trips to the mall and movies, or sleepovers. She lost it all. She was alone and sick and still trying to hold it all together.

Summer came and she once again had another setback. Her seizures started happening increasingly and for worse. She was in and out of the hospital once again. We begged for help from so many doctors and hospitals but all we were ever told from them was Bella’s not sick, this is all in her head. Can you believe that? We have come to realize that most everyday doctors know nothing about Lyme disease and, therefore, are zero help to patients looking for help!

Her Lyme-literate doctor has been her rock, researching and trying everything she could think of to help Bella. Even the doctor needed help to figure this whole thing out as Bella’s case is rare. She is not the only one out there with Lyme-related seizures, but it is still rare. There weren’t enough resources out there to help people like her.

By the end of August, she finally gave up on everything. She quit dancing and that was the hardest thing she has ever had to do. She lost the last of her friends that she had through dance and that broke her heart. She was so alone and isolated and it also broke my heart to watch, as her mother.

At the end of the fall, we finally got some extra help from a specialist in NYC who suggested IVIG infusions. It took months to get insurance approval. We were able to start treatments to fix the encephalitis! They are not easy by any means; they make her sick and give her horrible migraines to the point of being bedridden once again. They are eight hours long. Bella is poked and poked every month for bloodwork and this IV treatment. Yet, she keeps a smile on her face, imagining a world where she is healthy again.

Today, after a year and a half after being diagnosed, Bella is still in treatment and is not 100% better yet. There have been so many setbacks along her journey. As a family, we all learned so much that we didn’t know about this awful disease. But she is finally in a place where she is feeling a little better. Life has changed for our girl and for our whole family in a way I can’t explain! Every day we are hopeful that she will one day again be healthy and happy.

Imagine you are in this situation. How would you handle things? Would you lay in bed and shut out the world? Would you give up? Bella has had a lot of those days, and she has had to learn a lot of hard truths about friends and life in general that no child should ever have to learn. She carries herself every day with grace, with her head held high and never gives up this fight! She is the strongest person I know!

Bella started dancing a little bit again. It’s difficult, but she is putting herself out there and trying to be her old self again. Bella has made some new friends at dance, and they have really helped her smile again and that has been such a blessing. Bella will never give up her hope of being her old self again and we know with the continued help of her LLMD she will get there! This is Bella’s Lyme disease story.