Our Lyme Disease Story
Rebecca Roll, Founder, Lyme WNY, a non-profit group in Buffalo, NY centered around Lyme disease patient support, Lyme disease awareness and prevention, and Lyme disease facts and information, writes about how a Lyme disease “nightmare” turned into a nationally recognized Lyme Warrior advocacy group.
This is not an easy story to tell in a page or so. It could probably be written into a book someday. 2013 started off as a normal year: I was a wife, a mother of a 2 and half year old sweet girl, and working as a first grade teacher. It was the beginning of the summer and I can remember it as clear as day - my very healthy, very handsome, 34 year old hardworking Landscaping husband, Chuk, came home from work with a 104 fever. In the years I’d known him – he was my high school sweetheart! - he had never had even a sniffle, let alone a 104 fever. As an adult it is not typical to have that high of a fever - he was fatigued, having neck pain, headaches, sweats, and a myriad of other symptoms. Finally, in the middle of the night, we went to the emergency room.
After many hours and many tests, we were relieved to find out that he was diagnosed with an Urinary Tract Infection. (UTI) and put on a ten day regimen of antibiotics. All symptoms quickly went away and he was back to normal. But, fast forward to August 2013. The fever was back, the pain was back, he had severe conjunctivitis, he couldn’t concentrate, and he was having vision problems. What was happening?
We quickly called our primary doctor, but the doctor refused to see him. The doctor instead scheduled him with a young Physicians Assistant (PA) fresh out of college. However, I am actually thankful for this because my husband was a mystery. The PA needed advice from veteran doctors. Did he have cancer? Lupus? Fibromyalgia? Multiple Sclerosis? Reactive Arthritis? ALS? All of these diagnoses were thrown at us. The young PA reached out to the very best Infectious Disease doctor in Buffalo, NY, who is, in my opinion, the best in the world. He agreed to take him on as a patient, knowing something was wrong.
After more tests, MRI’s, a spinal tap, hundreds of vials of blood drawn, my husband had a diagnosis: Lyme disease. I will never forget when the nurse called me: “Mrs. Roll, your husband has Lyme Disease.” It was a relief! A blessing! This was it!
“Now what?” I asked the nurse. “What do we do? Who will help us?” The nurses response: “No-one.” Click. I was dumbfounded.
Luckily the doctor was able to help us for a bit, but even eventually Chuk’s case became too complicated. Anyone who knows the logistics of Lyme disease knows that Infectious Disease doctors are usually hands off, or it is quite controversial for them to continue to treat patients with diagnosed Lyme disease. We ended up traveling to Pennsylvania once a month, a six-hour round trip drive. There, my husband saw a Lyme Literate Medical Doctor (LLMD) to receive the proper medications and treatments for Lyme, Mycoplasma and Bartonella – all of which were caused by that single bite just months earlier.
He did this – the drive to Pennsylvania once a month and the treatment - for over four years.
Thankfully after four complicated years, and even questioning if my husband would ever have his health again, he reached, what we considered, remission. We even welcomed a second baby along the way. As I type this, there is so much more I want to say, so many more grueling details I can include, but like I said in the first sentence: This story, this nightmare, we lived through could be a book.
Throughout our journey my husband and I decided to start a group to help others, Lyme WNY in 2016, a non-profit organization to help people during their Lyme disease journey. What started out as five people who had Lyme disease meeting in a restaurant turned into 50 people meeting every month at a local Fire hall. We didn’t want anyone to ever experience what we did. This is when I, and my co-chair, Patty Regan, took a leap. We decided to attend the Global Lyme Alliance Gala in New York City. Maybe we could make some connections, and maybe this event could help our members. Well, I ended up sitting next to Chris Fuentes, Founder and CEO of Ranger Ready Repellents, and members of his team. They were developing a new insect repellent – safe and effective with the DEET-alternative Picaridin 20%. Who knew this brief meeting would turn into a partnership.
One of Lyme WNY's main goals is prevention and Ranger Ready has been with us throughout. We have been able to provide hundreds of bottles of spray, and education to both children and adults. We are able to provide hope and help year round due to the generosity and determination of Ranger Ready’s relationship with Lyme WNY, and we know prevention is key.
I wish in 2013, I would have known the devastating effects Lyme disease and other Tick-Borne Illnesses have on one’s health. I wish in 2013 I knew to use preventions such as Ranger Ready. I wish in 2013 we had local support to talk to other people going through the same experience. Now, it is 2021 and a lot of these wishes have come true.
What do I think of when I think of now, when I think of the future? I think there is hope. I think there is a way to prevent this awful disease from happening. I hope you listen to our story and I hope you use preventions such as Ranger Ready, do your tick checks, listen, and learn. I hope you have a safe and healthy 2021, and beyond.