My story: Living with Lyme disease
Katie Carpenter | 06.06.13
Linda's husband, son, daughter-in-law, and young grandson are all living with Lyme disease.
Linda Olley, a Registered Nurse, from Harrisburg, has been living with the devastating affects of Lyme disease for 30 years. She went without a proper diagnosis and treatment for 20 years. Yet, through her suffering, she’s been able to remain hopeful. And, she helps others who are living with Lyme find hope for themselves.
She says: “I just want public to be aware that there is help and there is hope… and to seek that.”
This is Linda’s story:
“I awakened one morning in 1984 with multiple symptoms- including a stiff neck, a temperature, a migraine headache, chills, sore throat. I literally was not able to lift my head off of the pillow. I was so ill that a family doctor made a house call and treated me for the Flu.”
Although antibiotics did help her return to a normal life, 3 months later, she experienced bizarre symptoms: a continuation of migraine headaches, muscle twitching, fatigue that was unrelenting and a plethora of symptoms that continued to progress.
“I saw probably 15 doctors all ending in ‘ologist’ because my symptoms transcended into so many different parts of my body,” she says. “I had heart palpitations, my eyes were affected, my hearing was affected, my nerves were affected, my joints, my brain… and no one able to identify what it was.”
Linda advocated for herself and kept saying that she felt that what she had was Lyme Disease.
“I kept saying that I felt that I had Lyme disease as I have a history of over 100 tick infestations from living in our summer cottage in the woods for so many years, but no one thought it was Lyme.”
“And, the more I read and empowered myself with knowledge, the more I was determined to persevere.” And she did.
Watch her powerful story in the video below:
Finding the right doctor:
She says that it wasn’t until she saw a Lyme literate doctor- Lyme literate meaning a physician who sees and treats lots of Lyme disease and is current with the scientific evidence and research- that she was able to get appropriate treatment which included long-term antibiotics.
A diagnosis was a relief after 20 years of not knowing. “It was finally believability that what I was experiencing was not in my mind. It was a real disease and it brought a sense of peace that now I know what I have and what am I going to do about it.”
“Finding the right doctor that knows the importance of treating long-term, and not just with antibiotics… it is the key to a person’s health and wellbeing. Because, had I been treated and diagnosed appropriately and early, I would like to believe that I wouldn’t have had to have 14 surgeries and 6 total joint replacements… which began at 40 years old.”
“My best advice is to find a doctor that treats lots of Lyme patients. And, the support groups in PA can help connect people with right doctors.”
“I have a wonderful doctor that has allowed me to be an active participant in making responsible decisions about my own health and wellbeing. I wouldn’t go to doctor where I wasn’t an equal partner,” she says.
Support groups provide education, comfort and hope.
Support and hope:
"The only thing that makes sense out of pain and suffering is to be able to give back,” Linda says. So, when her career as parish nurse ended, God nudged her to start a local support group in the Harrisburg area. And, that brought meaning and purpose to her life and experience. Over 250 people are in the support group’s database and it continues to grow each month.
If you’re interested in attending, the group meets on the 3rd Tuesday of each month at Country Meadows in Mechanicsburg from 7-9 pm. People can become educated about the disease and learn how to advocate for themselves, which is a key, she says. “People can turn to a loving group who are dealing with the manifestations of Lyme, and find hope and help in these support groups.”
Olley says, “I believe no such thing as a hopeless situation, just people who grow hopeless about them.”
Click here for a video on Lyme disease prevention, and a list of useful resources.
*Please stay tuned for more videos coming soon on Lyme disease prevention, awareness, and support.
Tell us: Are you living with Lyme disease? What have you experienced on your own journey? Has it been difficult to find the support you need and why? What are the key things that helped you? Please share your story in a comment below.