WILBRAHAM – Imagine being stationary for 80 to 90 percent of your day and every time you get up to walk around your home, your heart begins racing to 160 beats per minute. You become very short of breath and are nearly always in a state of extreme fatigue.
This has been a reality for 44-year-old resident Jennifer Corey for more than a year after she was diagnosed with late stage neurological Lyme disease from a tick bite she received nine years ago. She was undiagnosed for at least seven years.
“It’s destroyed me,” Corey said. “It’s taken away every aspect of my functional life. I’m basically a shell of a person, who I was before this and who I am now. Every single, most every single hour is a struggle just to stay positive and to have hope that there will be something that will eventually get me back on my feet.”
Nine years ago, Corey was bitten by a tick on her left elbow and did not develop typical Lyme disease symptoms such as a high fever, flu like characteristics, and a bull’s eye rash. When she found and removed the tick, it had been fully engorged with her blood.
She said she recognized most of the symptoms approximately four months after the tick bite, but test results for Lyme disease came back negative.
Corey said she received her current diagnosis in August 2014. Prior to her diagnosis she was suffering from insomnia, only getting about two hours of sleep per night, as well as other symptoms such as severe headaches, stomach and intestinal issues, and severe pain in her lower back, abdomen and sides.
Neurological symptoms included paresthesias in her left leg, neuropathy in all of her extremities, exhaustion, muscle weakness, despite being an avid gym member for at least two decades, and “the list goes on,” Corey said.
On May 18, 2014, she awoke and was unable to walk.
“My entire left side was completely numb, face including,” she added. “I had low grade yet unrelenting nausea, profound weakness, moderate shortness of breath and what felt like being electrocuted every time I took a breath. I was experiencing difficulty with talking and my face muscles would go rigid and my head would fog up whenever I would try to talk.
“[The Emergency Room] ruled out stroke and sent me home. I was told to follow up with [a] neurologist for possible [multiple sclerosis],” she added.
Corey said the reason she went undiagnosed for seven years was because “doctor’s don’t really know how to accurately diagnose it.”
She added that another patient who she befriended suggested that she might be suffering from Lyme disease and she sent her blood work to a specialized lab in California, which confirmed the disease.
“Mainstream medicine doesn’t know how to treat the diagnosis and there’s not really any research out there to show what’s effective for treatment,” Corey said. “So it can be really challenging traveling and finding doctors who will try to help me with some of my diagnoses. It’s more of a trail and error.”
Corey said the most important thing people should know is that when they go to get a Lyme test that’s negative “it does not mean that you do not have Lyme.” The tests can be up to 80 percent faulty.
“It’s just a nightmare and people don’t know that, especially myself, I didn’t know that,” she added.
The cost of intravenous (IV) medications for Corey was approximately $5,000 per month for seven months, which consisted of “home infusions.”
None of the thousands of dollars worth of treatments are covered by insurance, Corey said. She recently lost her job as an occupational therapist in the geriatric home health industry, which she had been doing for six years.
“It was my passion and now it’s gone,” Corey said.
She added that she has had a lot of support from her family, including her husband John and their 12-year-old daughter Emily, as well as friends and other relatives.
Corey is currently in Germany for a “last ditch effort” – hyperthermia treatment, which raises the patients internal body temperature to 107 degrees Fahrenheit for five to eight hours in attempt to eradicate viruses or infections.
This type of treatment is similar to letting a fever run its course and has been proven effective in cases of late stage Lyme disease and other illnesses such as cancer, she added.
“They’ll be using IV antibiotics along with the hyperthermia and they will be using a variety of other types of therapy,” Corey said.
The $25,000 treatment is scheduled to take place during the course of 15 days at the Klinik of St. George located about an hour outside of Munich, in the city of Badaibling, she noted. Corey left for treatment at the end of May.
“There is no cure for late stage Lyme and treatment is expected to last approximately three to four years with a goal of remission,” she added.
There is a GoFundMe page for Corey’s medical expenses, which has reached $4,965 as of June 1. The fundraiser’s goal is $10,000. Eighty-five people have donated to the page during the last seven months.
The GoFundMe page is for Corey’s medical expenses unrelated to her treatment in Germany.
For more information about the GoFundMe page visit www.gofundme.com/jencoreylyme.