Ticked off at Lyme Disease- Please help Joe Day
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In December of 2019 the life of a loving and supportive father of two changed forever. Joe is a full time caring father of two young boys, husband to a hardworking wife, and a full-time professional firefighter in the city of Utica. What began as a presumably minor neck pain quickly became a life altering disease that has created many hardships for Joe and his family.
In January of 2020 Joe went to the Emergency Room for what seemed to be a minor neck pain. However, Joe’s pain worsened and the doctors in Utica subsequently referred Joe to a neurosurgeon. Joe was then tested for MS, ALS, Lupus, a Brain Tumor, Leukemia, and Lymphoma. All of which came back negative.
With no diagnosis, Joe’s condition continued to decline where he was losing his ability to walk, talk, open his eyes, and needed someone to be with him at all times. He had multiple ER visits, in Utica, Syracuse, and even Albany. In Albany the doctors there administered many tests, including a CT Angio, MRI, multiple Spinal Taps, and numerous occurrences of constant bloodwork.
With lack of a concrete diagnosis Joe was then referred to the Stram center, located in Delmar, NY, which specializes in various cancers and lyme disease. After extensive testing, it was determined that Joe suffers from Chronic Neurological Lyme Disease. It was also at this center that it was determined Joe carries a genetic mutation called the Methylenetetrahydrofolate Reductase Gene, more commonly known as MTHFR gene. This gene mutation inhibits the body’s ability to efficiently rid the body of toxins. The body generates many toxins in its fight against chronic Lyme disease. As a result, Joe’s inability to rid his body of those toxins requires more extensive and complicated treatment.
The CDC has stated that Lyme Disease is the fastest growing vector-borne infectious disease in the United States with the number of cases reportedly increasing annually nearly 25-fold since reporting began in 1982. On average a Lyme Disease patient will see 5 or more doctors over a span of 2 years before they receive answers and even begin treatment. The CDC and private insurance companies do not recognize chronic lyme disease as a coverable illness and that it simply does not exist. They also associate it with costly experimental and expensive treatments. Despite a patient having insurance coverage the insurance companies pick and choose what they cover and what they deem are “unproven treatments.”
This has forced the Day’s to fund a good portion of Joes recovery out of pocket. They pay for transportation to and from his out of town appointments and at times hotels for when he has multi-week treatments and is too sick to make it home. They cover consultations, thruway tolls, gas, food, supplements and daily regimented medications. Most importantly, the cost of the Joe’s treatments. Currently, Joe spends 4 hours a night hooked to IV bags of medication via PICC line. This is Joes second PICC line in one year. Joe also has a home health aid that comes to his house weekly for blood work. Once Lyme disease becomes chronic, extensive and comprehensive treatments are required which take time to yield results.
Chronic Lyme Disease has also prevented Joe’s ability to perform his regular assigned duties as a Lieutenant of the Utica Fire Department. In addition to Joe's duties as a Lieutenant on the line he is also the coordinator of the Utica Hazmat unit, works in the fire marshal's office, and until recently, was a Deputy Fire Coordinator with Oneida County. When he is physically able to, Joe returns to work in a limited capacity requiring him to work off the line as a day worker. However, Joe’s ability to take overtime, and work additional duties to support his family are no longer a possibility for Joe.
The financial burden of the illness, coupled with the decreased income has created overwhelming stress for Joe and his family. To date, they have spent over $20,000 on treatments and care. Joe's doctors have suggested treatment protocols they feel will greatly improve his condition. However, the lack of insurance coverage and already costly road to diagnosis and treatments, make further appropriate treatments seem unattainable. It is not at all uncommon for someone with Lyme to spend at least $100,000 or more to get well.
The Days have built professions around helping others. Joe as a civil servant and Tracy as a dedicated nurse. They have helped and supported so many within our community. Now is our opportunity to show our support. Joe and Tracy need our help, whether it be extra prayers or monetary donations. In an effort to provide Joe with the opportunity to have the proper treatments he requires in order to continue to get well, we are seeking any and all help.
In January of 2020 Joe went to the Emergency Room for what seemed to be a minor neck pain. However, Joe’s pain worsened and the doctors in Utica subsequently referred Joe to a neurosurgeon. Joe was then tested for MS, ALS, Lupus, a Brain Tumor, Leukemia, and Lymphoma. All of which came back negative.
With no diagnosis, Joe’s condition continued to decline where he was losing his ability to walk, talk, open his eyes, and needed someone to be with him at all times. He had multiple ER visits, in Utica, Syracuse, and even Albany. In Albany the doctors there administered many tests, including a CT Angio, MRI, multiple Spinal Taps, and numerous occurrences of constant bloodwork.
With lack of a concrete diagnosis Joe was then referred to the Stram center, located in Delmar, NY, which specializes in various cancers and lyme disease. After extensive testing, it was determined that Joe suffers from Chronic Neurological Lyme Disease. It was also at this center that it was determined Joe carries a genetic mutation called the Methylenetetrahydrofolate Reductase Gene, more commonly known as MTHFR gene. This gene mutation inhibits the body’s ability to efficiently rid the body of toxins. The body generates many toxins in its fight against chronic Lyme disease. As a result, Joe’s inability to rid his body of those toxins requires more extensive and complicated treatment.
The CDC has stated that Lyme Disease is the fastest growing vector-borne infectious disease in the United States with the number of cases reportedly increasing annually nearly 25-fold since reporting began in 1982. On average a Lyme Disease patient will see 5 or more doctors over a span of 2 years before they receive answers and even begin treatment. The CDC and private insurance companies do not recognize chronic lyme disease as a coverable illness and that it simply does not exist. They also associate it with costly experimental and expensive treatments. Despite a patient having insurance coverage the insurance companies pick and choose what they cover and what they deem are “unproven treatments.”
This has forced the Day’s to fund a good portion of Joes recovery out of pocket. They pay for transportation to and from his out of town appointments and at times hotels for when he has multi-week treatments and is too sick to make it home. They cover consultations, thruway tolls, gas, food, supplements and daily regimented medications. Most importantly, the cost of the Joe’s treatments. Currently, Joe spends 4 hours a night hooked to IV bags of medication via PICC line. This is Joes second PICC line in one year. Joe also has a home health aid that comes to his house weekly for blood work. Once Lyme disease becomes chronic, extensive and comprehensive treatments are required which take time to yield results.
Chronic Lyme Disease has also prevented Joe’s ability to perform his regular assigned duties as a Lieutenant of the Utica Fire Department. In addition to Joe's duties as a Lieutenant on the line he is also the coordinator of the Utica Hazmat unit, works in the fire marshal's office, and until recently, was a Deputy Fire Coordinator with Oneida County. When he is physically able to, Joe returns to work in a limited capacity requiring him to work off the line as a day worker. However, Joe’s ability to take overtime, and work additional duties to support his family are no longer a possibility for Joe.
The financial burden of the illness, coupled with the decreased income has created overwhelming stress for Joe and his family. To date, they have spent over $20,000 on treatments and care. Joe's doctors have suggested treatment protocols they feel will greatly improve his condition. However, the lack of insurance coverage and already costly road to diagnosis and treatments, make further appropriate treatments seem unattainable. It is not at all uncommon for someone with Lyme to spend at least $100,000 or more to get well.
The Days have built professions around helping others. Joe as a civil servant and Tracy as a dedicated nurse. They have helped and supported so many within our community. Now is our opportunity to show our support. Joe and Tracy need our help, whether it be extra prayers or monetary donations. In an effort to provide Joe with the opportunity to have the proper treatments he requires in order to continue to get well, we are seeking any and all help.
Organizer and beneficiary
Friends of Joe Day
Organizer
Utica, NY
Joseph Day
Beneficiary
