In the spring of 2012,
Jessica had just turned 20 years old and began feeling unexplained pain in her hands and feet. As the pain progressed and more symptoms arose, her doctors tested for arthritis, lupus, and MS, but none of her tests came back positive. After 3 months had passed and more tests were run, Jessica’s symptoms were getting worse. Her fatigue was extreme, her pain spread to her entire body, her heart was racing, and she was constantly faint and weak.
Fortunately, a last resort test was ordered for Lyme Disease and Jessica was part of the lyme disease population that exhibited a positive result. However, we had no idea that even with a positive test result, we were about to embark on a difficult journey to improve her health. A journey filled with little answers from doctors and intense treatments.
The next year was a blur of confusion
trying to find physicians with proper Lyme experience to treat Jessica’s advanced disease. Countless doctors visits, tests, and treatments often made us feel helpless. There was a specialist in Denver who told Jessica she did not have Lyme despite her very positive test, and an infectious disease specialist in Phoenix who performed many invasive and painful tests only to tell Jessica, once again, that she did not have Lyme. Meanwhile, Jessica was getting sicker.
Now Jessica was 21 and finishing college
despite her intense brain fog, partial hearing loss and mild bell’s palsy symptoms, in addition to her ongoing pain and fatigue, we finally found a doctor to treat Jessica for Lyme, but it was all cash pay and no standard protocols. At that point, I would have sold my house to help her. Jessica was unbelievably sick and no one we were used to counting on as medical experts were able to help her. I constantly asked myself, why?
Jessica had a port placed in her chest and started IV antibiotics 4 days a week, 5 hours a day for an entire year at the recommendation of a Lyme specialist. I was aware that was an extreme amount of antibiotics and the cost was outrageous, but she needed help.
When someone you love is becoming sicker by the day and there is no help in sight, you will do anything to help.
The next step in our journey
is that I found an amazing Lyme doctor in New York and with his care Jessica showed improvement. After several, months, Jessica began to get better. Today, years after her initial diagnosis she is about 80% of her normal self.
Our story is surprisingly better than most, but there is still no cure in sight. We are still contacted by many people who have Lyme, or are trying to help a loved one, asking what helped Jessica. There were so many steps in her treatment that we are not completely sure what truly played a role in her improvement. At the end of the day, she is not cured and there is too much confusion, sickness, cost, and unanswered questions around Lyme.
I became so frustrated which motivated me to try to ensure no one had to experience what we did. With a strong background in events and funding medical research, I put my experience to work and created Focus On Lyme. With your help, we will make a difference. Thank you for reading our story.
Founder, Focus On Lyme
Mother to Jessica Crawford, Lyme disease patient