A Note from the Director - 2019
In September 2015, four days before our wedding, my husband was diagnosed with Lyme Disease. He had been experiencing weird symptoms for a year by that point with no answers. Severe headaches, dizziness, brain fog, inability to focus, stuttering and unable to think of words… plus, forgetting how to get home while driving… were some of the scarier symptoms that lead him to see a neurologist in August 2015. She ordered blood work and MRI’s and in the meantime prescribed him an antidepressant (what??), but still couldn’t give us any answers.
Then one week before our wedding, Mark ended up in the hospital unable to breathe. A nurse that evening asked if he’d been tested for Lyme Disease which prompted his cousin (who is a doctor… thank God for that!) to look at his blood work from August again. Sure enough, Mark had tested “equivocal” for Lyme, but didn’t meet the CDC criteria for a lab diagnosis… so it had been dismissed by the neurologist's team. Since false negatives are super common with Lyme tests, our cousin decided to treat him for it and Mark instantly felt… well, worse. But that was a good thing! We learned later that he was having a herxheimer reaction as the bacteria was dying off.
After spending our honeymoon with intense pain and exhaustion (...from the Lyme, people), we got him scheduled to see Dr. Joseph, a Lyme specialist in Hermitage, PA. In January 2016, Dr. Joseph put Mark on a regiment of antibiotics to treat what had finally been labeled as chronic Lyme. You see, because Mark had gone so long without being treated for Lyme, it had permeated his body in debilitating ways, affecting his nervous system, joints and muscles, digestion and breathing.
In May of 2017, Mark started noticing muscle spasms all over his body. Given the previous neurological symptoms along with these new spasms, Dr. Joseph prescribed 8 weeks of Intravenously delivered antibiotics. After the treatment, the spasms disappeared and Mark felt better than he had in years. He was finally ready to stop taking antibiotics. The battle was over… or so we thought.
In October 2018, the fasciculations came back with a vengeance. By Thanksgiving, he was experiencing extreme fatigue, weakness and numbness in his limbs to the point where walking became difficult and he had fallen over multiple times. In mid-January, Mark was rushed to the ER 3 times over a span of 5 days because of his inability to walk, excruciating headaches and once because his face was drooping and he started slurring his speech and I thought he was having a stroke. After ruling out ALS, MS, and more, an updated MRI of the brain showed what’s called demyelination and called out a “potential infectious process” as the agent. It was suggested to us by a UPMC neurosurgeon that he go back to the doctor who treated him for Lyme. We called Dr. Joseph that week.
It had taken us 4 months to get in to see him the first time, but when we called in January, he happened to have a cancelation and we were able to see him the next morning. (Praise the Lord!) Dr. Joseph confirmed that patients can have relapses of Lyme and he prescribed Mark another 8 weeks of intravenous antibiotics. After completing the treatment in early April, Mark felt unbelievably better than he had in January. There are some bad days still, with flare ups of pain and other symptoms, but we’re now exploring other treatment options as Mark continues to courageously fight the disease.
I share this story with all of you because Pennsylvania is an epidemic area for Lyme. It has changed our life and has affected just about every aspect of Mark’s body, and if our story can spread some awareness, hopefully it will save a few lives out there.
There are a few things we recommend to prevent Lyme Disease and other Tick-Borne Illnesses from infiltrating your life as it has done ours. First of all, wear protection when you’re outside. Whether you’re gardening, hiking or playing in the front yard, Lyme-carrying ticks are on average the size of a poppy seed and often not even noticed. When you or your pets come in from being outside, check the entire body. Again, these nasty little buggers are small. Second, If you or a loved one does get bit by a tick, ask your doctor for antibiotics regardless of test results (recommend at least 28 days for adults). The current test for Lyme is faulty and people often get false negative results. Lyme is a time sensitive issue and if it isn’t treated within 30-60 days, systemic issues will arise. Finally, if you ever start experiencing weird symptoms like Mark’s and no one is able to give you answers, explore the possibility of Lyme Disease. Like Mark, A large percentage of people with Lyme never recall getting bit or developing the tell-tale bull’s eye rash.
The battle isn’t over, but we have hope. Thank you so much for all of your thoughts and prayers and the countless moments of making us feel loved by asking me how Mark’s doing. Your flexibility and understanding over the last several months made a huge impact on our ability to make it through this time. Thank you for your continued prayers and support. It means so much to me to have a dance family that cares about us. From the bottom of my heart, thank you. <3