STAUNTON – Susan Horne used to be bed-ridden. It was a struggle to get to the bathroom, walk down the hall and even play or take care of her two boys.
It comes in waves, the Staunton resident said. Some days she’s completely fine and others, she’s not.
She was diagnosed with Lyme disease in 2016, but she believes she’s had it since 2010 — according to some homeopathic doctors. It just went undiagnosed because she had no symptoms. But when she got pregnant with her first son, there were some definitely red flags, she said.
Diagnosed with Lyme disease, Susan goes about her daily life where at times even small tasks can be a challenge. Even everyday tasks such as cooking can prove physically challenging.
“We didn’t know what was wrong with me,” she said. “The doctors didn’t know if I had gotten bit earlier in my life because my face was paralyzed on the left side when I was pregnant with my first son, so I had Bell’s Palsy. Now we know that’s a common thing in Lyme disease.”
“We couldn’t go out to dinner, because she’d either feel so bad that she didn’t want to go, she couldn’t sit up, and she couldn’t sit still,” her husband Chris said. “You see her jittering here, it’s not because she’s trying to readjust, that’s how she does now. She constantly does that.
“You’re talking to a person who had thousands of friends where she was going out to lunch with this person and that person. She had a scrapbooking business. It went from that to nothing,” he added. “She wouldn’t leave the house, not only because she felt bad, but because she was embarrassed.”
Everyone would say that she was just depressed, or she was making it up, or why can’t she just get better?
“When you’re this sick and people say you’re just faking it. No, you’re faking you’re well,” Horne said.
It’s been a constant battle of ups and downs, doctor visits and unanswered questions. Not to mention the amount of money her and her husband have shelled out of pocket for numerous doctor visits — the sum of around $150,000 in the past eight years.
“My whole life is doctor appointments, pills and money,” she said. “It’s so hard putting out all that money.”
Her nervous system isn’t the same. Bright lights bother her. Mold is an aggravant to her. Her jaw is just bone to bone due to her cartilage and muscle wearing down — all due to Lyme.
Horne thinks she was bit by a tick years ago, before her first son was born nearly 15 years ago. That’s how she got the Bell’s Palsy and other symptoms during her pregnancy. But, she was healthy and her body fought it off.
“It took me later on down the road to put two and two together, that it was the tick bite,” she said. “A lot of people get sick with flu symptoms right away. I don’t remember getting sick right away with flu symptoms.”
“The first pregnancy she was very active, she had lost weight, she was very fit,” her husband said. “Through her first pregnancy she was working, she was going to the gym and I would consider her very healthy. I think that’s what pushed her through.”
She stopped working after her first son was born, to be a stay-at-home-mom. After her second son was born, that’s when things started to go south.
“We were playing in the yard one day. We were playing with a ball, just kicking it around,” she said. “Then I came in the house to give my son a bath, he was three at the time he’s 11 now, and there was a tick on the floor.”
Days later she noticed a rash, which she now knows was what is commonly known as a “bull’s-eye” rash that is associated with Lyme. She didn’t go see the doctor, though.
“I was like, who goes to the doctor for a bug bite? Nobody goes to the doctor for a bug bite.”
What is Lyme?
According to the Centers for Disease Control and Prevention, Lyme disease is an infection caused by the bacterium Borrelia burgdorferi. In the majority of cases, it is successfully treated with antibiotics. People can exhibit non-specific symptoms, like fatigue, pain and joint and muscle aches.
She waited and about three months later some weird symptoms started to happen. She was getting dizzy, had terrible headaches and she couldn’t get out of bed. It often felt like she was on a boat, like there was constant movement under her feet and she couldn’t remain steady.
“The dizzy spells kept coming on to the point where you had to get on the floor.”
She went to her general practitioner, but he couldn’t find anything. He suggested high blood pressure or even depression.
“I’m not depressed, I love being home with my kids. Why do they keep telling me I’m depressed?”
She was starting to get fed up. Many doctors and dollars later, she started doing her own research. Her legs started to ache, she had joint pain and one doctor would just refer her to another doctor.
“I understand why the doctors couldn’t believe that this was happening to me, because I couldn’t believe that all of this was happening all at once.” she said. “When you first get it, it lives in your blood. Once you have Lyme long enough it just starts drilling holes … through the tissue, connective tissue, your joints.”
In 2012, she went in to be tested for the Western blot test, which tests for Lyme. But, her test wasn’t “positive enough.”
The CDC currently recommends a two-step process when testing blood for evidence of antibodies against the Lyme disease bacteria. Both steps can be done using the same blood sample.
The first step uses a testing procedure called “EIA” (enzyme immunoassay) or rarely, an “IFA” (indirect immunofluorescence assay). If this first step is negative, no further testing of the specimen is recommended. If the first step is positive or indeterminate, the second step should be performed. The second step uses a test called an immunoblot test, commonly, a Western blot test. Results are considered positive only if the EIA/IFA and the immunoblot are both positive.
The two steps of Lyme disease testing are designed to be done together. CDC does not recommend skipping the first test and just doing the Western blot. Doing so will increase the frequency of false positive results and may lead to misdiagnosis and improper treatment.
Horne doesn’t blame the doctors, she understands they are following regulations.
“What I’ve learned from this is what might help you, might not help me.”
The tick that bit Horne also gave her Bartonella and Babesiosis, which are co-infections of Lyme. But, she’s been checked for a number of things like lupus, multiple sclerosis and chronic fatigue syndrome, the latter of which she was diagnosed with.
In 2013, she saw another doctor, who put her on antibiotics.
“It was horrible. I couldn’t get out of bed to take care of my kids,” she said. “I was so dizzy I couldn’t walk from my bed to the bathroom. My 10-year-old had to bring me food to the bedroom. I couldn’t sit up, I couldn’t stand up, I couldn’t walk, I could barely go up and down the steps. The kids had to pretty much fend for themselves.
“I couldn’t take them to the park, or the pool or the movies. That was the hardest part,” she added.
She’s extra vigilant about going outside. She’s makes her own tick spray from essential oils and limits her time outdoors, away from trees and tall grasses.
For ticks, their season is a long one. The CDC says from April to September and in warmer months, ticks are most active. (Have link to a tip page)
Early this year she was back where she started. She couldn’t move, couldn’t do anything. It was more doctors that couldn’t help and even a trip out to a facility in Kansas, that ended up making her worse. That’s when she turned to her own research.*