Hagerstown woman discusses living with Lyme disease
"It has taken 18 years of being misdiagnosed, but local resident and business-owner Marsha Knicley, 64, of Hagerstown, can finally say she has Lyme disease."
http://articles.herald-mail.com/2013-06-02/lifestyle/39696823_1_lyme-disease-borrelia-tick-bite
Hagerstown woman discusses living with Lyme disease
Mary Pat Kelley/Photography by D /
It has taken 18 years of being misdiagnosed, but local resident and business-owner Marsha Knicley, 64, of Hagerstown, can finally say she has Lyme disease
Those who know Knicley they would describe her as a smart and savvy businesswoman with a big personality and a big heart.
Knicley has owned Sagittarius Salon & Spa in Hagerstown for 40 years. Yet behind the hairspray and glamor is a woman fighting to survive a debilitating disease.
Lyme disease was first discovered in Lyme, Conn., in 1975, and it was there it found its name. The disease is found on every continent except Antarctica.
According to the Centers for Disease Control and Prevention, Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks.
“I thought a lime was something you put in your drink, I had never heard of this disease,” Knicley said.
After years of battling the disease, Knicley said she went to a specialist in Washington, D.C., for help and a diagnosis.
“After testing me, my doctor, Dr. Joseph G. Jemsek, called and said ‘I have good news, you have Lyme disease, I also have bad news, you have Lyme disease,’” she said. “It sounds crazy but I was relieved that I finally knew what was wrong with me. Sadly, there is no cure.”
According to the CDC, Lyme disease is the sixth-fastest-growing, vector-borne disease in the United States, and Maryland ranks in the top 10 states reporting the highest cases. A vector-borne disease is an illness that is transmitted from one host to another by an intermediate organism often an insect or arachnid, such as a tick.
Lyme is characterized by the bull’s-eye rash at where tick bite occurred. However, according to lymedisease.org, 85 percent of adults victims don’t remember a bite and fewer than 70 percent don’t develop a rash.
“You may never see a tick — I didn’t,” Knicley said. “I also didn’t see a rash.”
According to lymedisease.org, the disease is often called “The Great Imitator” because it tends to mimic other diseases, often making it difficult for diagnosis. However, Lyme disease can be treated with a course of antibiotics over several weeks if caught in the early stages.
“The first symptom I suffered was severe fatigue. I would leave work and go home and sleep for hours,” Knicley said. “Sometimes I would have to lie down during the day in the salon. Some days I would have a fever, my joints would ache, it almost felt like flu. I was tested several times for the disease using a small titre test. This came up negative several times.”
After collapsing several times and being tested for heart defects, fibromyalgia and many other ailments, it was a client at the salon who likened her symptoms to that of Knicley’s.
“I found a Lyme-literate doctor who carried out more extensive tests,” Knicley said. “I had a full panel Western blot. This revealed I had Lyme disease, that was almost four and a half years ago.”
Many medical insurance companies across the country don’t recognize Lyme disease, and therefore the cost of treating the disease is often not covered.
“I have spent over $40,000 trying to best this disease, but there is so little research that doctors are almost fighting the unknown,” Knicley said.
In recent weeks there has been great concern nationwide for a shortage of doxycycline, the drug used to treat Lyme disease. The Mayo Clinic reports that doxycycline “is a staple of treatment for early-stage Lyme disease.”
According to the American Society of Health-System Pharmacists, most of the drug companies that produce doxycycline predict how long it will last. The shortage began early in 2013 and has caused prices to soar. One manufacturer says it is providing the antibiotic only to current contracted customers.
Although Knicley has been treated, she still lives with the residuals of the disease.
“I have started to document my thoughts, as without question, the worst symptom of Lyme disease is the memory loss, or ‘brain fog,’ as I call it,” she said. “I can’t think of words. It feels like my brain is full of cotton wool.”
For Knicley, Lyme disease has robbed her of so many things.
“Lyme disease has taken away my life, and it could have been avoided if diagnosed sooner,” she said. “I have a wonderful daughter who returned from New York to run my business and she is amazing. I try to live each day to the fullest, but I have to face it — I will be on medication for life.”
Recognizing the symptoms of Lyme disease in adults and children
Early symptoms for adults and children:
Flu-like illness (fever, chills, sweats, muscles aches, fatigue, nausea and joint pain)
Rash
Bell’s palsy
Later symptoms for adults:
Headache
Stiff neck
Light or sound sensitivity
Cognitive impairment
Sleep disturbance
Depression, anxiety, or mood swings
Arthritis
Fatigue
Abdominal pain, nausea, diarrhea
Chest pain, palpitations
Shortness of breath
Tingling, burning or shooting pains
Later symptoms for children:
Headache
Stiff neck
Light or sound sensitivity
Cognitive impairment
Uncharacteristic behavior
Inability to sustain attention
Outbursts and mood swings
Arthritis
Fatigue
Abdominal pain, nausea, diarrhea
Chest pain, palpitations
Shortness of breath
Tingling, burning or shooting pains
For more information on Lyme disease go to www.lymedisease.org.
