Running NYC Marathon to raise funds and Lyme awareness
By Dierdre Keenan
On Sunday, November 5, I will run the TCS New York City marathon. It has been 19 years since I ran my last marathon.
While running this marathon is something I am doing for me, it is also something I am doing to raise awareness and donations for LymeDisease.org. I am running the marathon 2023 in honor of my son Ryan.
Ryan was diagnosed with Lyme disease when he was 10 years old and treated with the antibiotic doxycycline. Throughout his high school and college years, he suffered frequent bouts of chronic fatigue-like symptoms. Ryan was an athlete and overachiever at school, so everything was written off as fatigue due to work overload.
Then, in October 2018, while working in London, his life changed. Ryan was hospitalized with a host of symptoms. He had abdominal pain, tachycardia, joint pains and extreme brain fog. Various tests were run on him, but blood work and scans were more or less normal, so he was discharged.
His diagnosis was chronic fatigue syndrome. They referred him to a specialist. That December, he returned home to the United States still feeling terrible. He saw four different doctors during his three weeks visit home.
What the doctors said
First, he saw a primary care doctor who came highly recommended by a family friend. This doctor tested Ryan for Lyme disease, and it came back negative. He offered him antidepressants.
The next doctor was a chronic fatigue specialist. She also tested him for Lyme disease, and again, it was negative. She offered a very extreme drug regimen which Ryan declined.
His condition continued to worsen, and he soon ended up in Lenox Hill Hospital’s emergency room, where he was seen by one of the ICU intensivists. They, too, found nothing, but referred him to a neurologist.
The neurologist worked him up for multiple sclerosis and some other conditions. Again, his results were all negative.
After Christmas, Ryan flew back to London to return to work. But only a few days passed before I received a call from him with saddening news. He said he was going to have to quit his job because he could barely get himself to work. This was a heart wrenching decision for him as he LOVED his job and his colleagues. He was on a path to his dream career…to be a writer.
He continued to stay in London under the care of a chronic fatigue doctor who treated athletes. This doctor helped him maintain an existence with supplements, lymphatic drainage and physical therapy. Yet, Ryan never stopped trying to understand and uncover what was causing his sickness.
Finally, positive for Lyme disease
Months later, I heard about a lab in Germany that specialized in Lyme disease testing. So, at my insistence, Ryan got tested. He tested positive for Lyme disease. We all felt so much relief. Finally, there was a diagnosis, and now he could get treated. It was now December 2019–one full year since he had started this journey.
He returned home for Christmas that year and found a Lyme disease specialist. This doctor said Ryan would need to move back to the United States for treatment. He felt the National Health System in England was unequipped to manage chronic Lyme disease patients.
Ryan moved home in February of 2020, just as the world came to a halt. The pandemic hit. It became impossible for us to navigate doctors and treatments during this time.
Since then, it has taken Ryan many years of failed doctors and treatments, countless hours of research, and thousands of dollars to finally find doctors who can manage his Lyme disease, mold toxicity and a host of co-infections.
The invisible disease
Ryan is one of hundreds of thousands of people suffering with chronic Lyme disease and all the struggles that go along with it; everyone has a similar story. It is sometimes referred to as the invisible disease because most people look normal but can be deathly ill. It can mimic other diseases such as multiple sclerosis, Parkinson’s, Alzheimer’s, lupus, depression and countless others.
Prior to falling ill, Ryan was a happy and extremely energetic 26 year old. He completed triathlons, he had a passion for his work writing and pitching screenplays and scripts for television and films, and he had a promising future ahead of him.
I am happy to say that Ryan is finally making progress in his recovery. In true Ryan fashion, he has never lost sight of that bright future and continues to fight his way back. The courage and strength Ryan has shown–while enduring the struggles this disease has thrown at him–is nothing short of inspiring. But this disease that so many others– like Ryan–suffer with each day, does not get the medical attention it deserves.
In addition to raising money for LymeDisease.org, I hope to raise awareness about the severity and prevalence of Lyme disease. Hundreds of thousands suffer with this disease today. CDC estimates that as many as half a million people may contract Lyme disease, EACH YEAR.
Yet too often Lyme disease patients are turned away, misdiagnosed and generally overlooked. The uncertainty of this disease is as troubling as the horrid symptoms. Thank you for taking this time to read Ryan’s story.