A family touched by Lyme disease trying to make a difference. Our story.

Part 1. The Mom

It’s the third set, second game, up 2-0. “We got this…, ”I convincingly repeat in my head while I grit my teeth and firm my grip on that racquet of mine, staring intently across the court at my soon to be victims all while fighting the intensity of the 90-degree heat.

I arm myself for the return serve while stamping a creeping toe cramp that mysteriously emerged. We won the point and the game, but the toe cramp began to crawl in severity quickly attacking my calves - making me the victim. I insisted on playing through the pulsating sensations determined to take the next game until I physically couldn’t. Before I knew it my machine of a body became something I didn’t recognize. I was brought to the ground of clay, unable to move my toes, calves, and thighs. I was paralyzed with excruciating, piercing and stabbing pain. It felt like aliens invaded my body. 

Hydration and my body’s inability to metabolize electrolytes is what I was told by my internist that next day. I was a “perfect specimen of health” with all my bloods verifying just that. My only known sickness or health issue that entire year was one month prior where I had a sudden fever and flu-like symptoms that came on suddenly but only lasted less than 24 hours. This was of no concern to the doctor as well. So off I went…

I was sore for the next few days, but soon after resumed activity, work and my tennis game. Until of course the next incident presented itself under the same heated conditions and third set competitiveness. This time, I took the necessary health precautions in advance of the match, hydrating effectively, consuming a full breakfast and adequately stretching my calf muscles. While this episode was not nearly the severity of the first, my legs did once again give out to the cramping and debilitating pain. Again, I followed up with my internist, now truly scared that something was really wrong with me. Again, I was dismissed. And again, I followed up, as the recovery turned into zapping to my calves like my finger was stuck in an electrical outlet, and tingling and numbness persisted in all my extremities. Soon I couldn’t walk properly. It was as if a dead weight was placed on my feet, and I had to drag my legs in order to move them. I was now panicked but powered through as I convinced myself I was fine and my body for the first time in 41 years just broke down. My internist after the next call referred me on to a rheumatologist who took a full panel of blood to screen for auto-immune conditions, including the Lyme Elisa test, which was negative. While my ANA titer was slightly elevated, there was no concern so off I went…

As I pushed myself to resume normal activity, the paralysis feeling soon turned into back pain, so intense I went to the emergency room straight from work one day. Again, the full battery of tests were conducted, once again revealing I was “a perfect specimen of health” and so off I went…

The back pain became so severe and traveled, leading me to a physiatrist who was convinced there was disc displacement and a neurologist as well until the lumbar spine MRI was negative. The additional three MRI’s including the brain and an EMG also concluded I was “a perfect specimen of health”. After two weeks of anti-inflammatory meds the back pain mitigated, but the tingling and zapping sensations persisted at this point I tried to convince myself once again it was part of the healing process and trauma to my body, but my instincts told me otherwise. Something was wrong with my nervous system. But based on the findings and conclusions of all these top doctors, I hushed these voices in my head and just accepted these sensations. And off I went…

These symptoms persisted for another two months into October 2016, along with increased anxiety and mind racing. I was urged by a family member and led to a psychiatrist to consider an anti-depressant as I was not right. Perhaps this was all in my head. If I calmed down, maybe my symptoms would as well - I would heal, and I would be back to my old self. I walked into the appointment with the goal of getting on an anti-depressant but walked out with a Lyme disease diagnosis. I was weeks away from being wheelchair bound. This one doctor out of a dozen saved my life. My only known tick bite was at age 11. 

Part 2. The Daughter

It was in eighth grade when our daughter felt pressure in her head. At the beginning, the headaches were manageable and intermittent, interrupting her time during class or in the evening, when she was knee deep in homework. Any ailments were atypical for her.  She was rarely under the weather; she mainly saw her pediatrician on well visits. However, she didn't think much of these sensations that introduced themselves to her, increasingly coming around more and more like an itch you can't scratch. Somehow she powered through her rigorous course load, kept up with her activities and social calendar - all the things that made her shine and make her who she is.

We remember the day when our daughter came to us. In fact, she was scared when her tolerance for this head pain became intolerable. "Mom, Dad, I think something is wrong with me," she said. Our daughter's best qualities are that she knows who she is, even at a young age. She has her own mind and feels comfortable in her own skin. She is confident in her decisions and has a clear and wise rationale and understanding of why she has made them. She is exceptionally bright, extremely hard-working and takes pride in her accomplishments. With her incessant conversations, singing, twirling and dancing, she fills silence and space with her own music. So when this music started to pause, we also knew something was very wrong. Our daughter was right. Something was very wrong. And so her journey to look for answers and heal began.

Her pediatrician believed these mysterious headaches were probably the stress of a teenager. He gave her breathing exercises. Our instincts told us otherwise. He referred us to specialists to rule out other causes. Physcian after physician and even a full battery of tests by a pediatric neurologist was considered normal. After digging deeper with specialists and having been touched by Lyme disease myself, it turned out that our daughter's crippling headaches were actually the root cause of two tick-borne infections. Thanks to the correct diagnosis and treatment by our hero Dr. Charles Ray Jones, a pediatric LLMD, in New Haven, Conneticut, who has saved and treated an overwhelming number of children from all over the world infected with Lyme and tick-borne diseases, our daughter is now completely clear of headaches. He saw something deep in these sick children that other doctors did not see. The parents of all his patients knew that there was something more behind their children's "labeled" diagnoses, and so did Dr. Jones. He fought tirelessly for them and sacrificed himself for the children. Our daughter was one of the lucky ones; lucky enough to have been graced by his brilliance and care. 

This experience stimulated and inspired our daughter's interest in science research, advocacy and helping others. She is now a Global Lyme Alliance Ambassador and an integral part of this platform, using her academic interests for research and education. 

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