LIVING WITH LYME DISEASE
“I remember specifically the night [my daughter Kate] started talking to me, and she paused, and I said, ‘what’s wrong honey?’ and she said, ‘I can’t find the words.’ I just I put on a happy face. I turned around and I just had tears,” said Cheryl Houser. “Then, I remember we were driving, and she always has been an avid reader, and she said, she couldn’t read and I said, ‘what do you mean you can’t read?’ and she said, ‘I can’t read it mom, I can’t read the words anymore.’”
“It’s been about six years since I first started exhibiting symptoms. For the first year and a half or two years, no one knew what it was,” Kate Houser said.
19TH TIME’S THE CHARM
Granville High School senior Kate Houser has been through more in her 18 years of life than most people will ever have to go through.
“I went to 19 doctors,” Kate explained. “The 19th doctor was the one who diagnosed me. Through that journey, I was diagnosed with lots of different things: arthritis, fibromyalgia, nerve damage, just a whole bunch of things.”
“How many pills were you on at one point?” her mother asked.
“Sixty-three a day,” Kate responded.
“I was finally after about two years able to find a person who was able to diagnose me and then I found another doctor who treated me, and I started getting better. At that point I was completely not going to school I couldn’t speak coherently. I wasn’t able to read, because it had infected my brain. I was 14 at this time. I was just completely bedridden. I slept for about 22 hours a day,” explained Kate.
FACTS ABOUT LYME
“Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics. Steps to prevent Lyme disease include using insect repellent, removing ticks promptly, applying pesticides, and reducing tick habitat. The ticks that transmit Lyme disease can occasionally transmit other tickborne diseases as well.”
Over the past 20 years, the number of confirmed Lyme Disease cases nationally has more than doubled, according to the Centers for Disease Control and Prevention. In 1997, there were 12,801 confirmed cases. In 2017 (the most recent numbers available), there are 29,513 with more than 13,000 additional probable cases being investigated. In Ohio, there were 233 confirmed cases in 2017.
“It isn’t insane to think about the amount of people in the area who have Lyme Disease,” Kate said. “When we did a fundraiser for the International Lyme and Associated Diseases Foundation, the amount of people that came up to me and said, ‘hey I’ve had Lyme since I was 16 and I’m still dealing with it’ or ‘my brother-in-law has been ill for such a long period time and he was just diagnosed with Lyme Disease.’ It’s really fascinating how all these people in the area can have this illness, and still not much is known about it.”
“Even our local hospital… some of the people who came to the charity event… several of the nurses said, ‘we don’t have Lyme Disease in Licking County.’ We know at least 12. Not before, but through someone who says, ‘hey Kate Houser has Lyme Disease. Go talk to her and her mom.’ It’s remarkable how the coverage is not there,” Cheryl continued.
BE YOUR OWN ADVOCATE
“A lot of doctors and health professionals just really steered me in the wrong direction, and they were adamant that it wasn’t Lyme Disease because blood test came back negative twice,” explained Kate. “But I have since learned through my own research, through multiple doctors who specialize in Lyme Disease that the blood test is it 100% accurate. If you have Lyme Disease you have about a 50% chance of having it come back negative, so that is one big thing that I want to talk about because if you are exhibiting the symptoms and your doctor tells you “no,” and you keep getting worse and keep having the symptoms, get a second opinion, get a third opinion, just keep going until you find a treatment that works, until you get the correct diagnosis even if it isn’t Lyme disease.”
“We went to the doctor to doctor… hospital to hospital– big-name hospitals– and they would just say, ‘oh, it’s arthritis’ or ‘I don’t think it’s anything. You need to get out of your wheelchair,'” Cheryl said.
SIGNS AND SYMPTOMS OF LYME DISEASE, ACCORDING TO THE CDC
- Fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes
- Erythema migrans (EM) rash:
- Occurs in approximately 70 to 80 percent of infected persons
- Begins at the site of a tick bite after a delay of 3 to 30 days (average is about 7 days)
- Expands gradually over a period of days reaching up to 12 inches or more (30 cm) across
- May feel warm to the touch but is rarely itchy or painful
- Sometimes clears as it enlarges, resulting in a target or “bull’s-eye” appearance
- May appear on any area of the body
- See examples of EM rashes
Later Signs and Symptoms (days to months after tick bite)
- Severe headaches and neck stiffness
- Additional EM rashes on other areas of the body
- Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
- Facial palsy (loss of muscle tone or droop on one or both sides of the face)
- Intermittent pain in tendons, muscles, joints, and bones
- Heart palpitations or an irregular heart beat (Lyme carditis)
- Episodes of dizziness or shortness of breath
- Inflammation of the brain and spinal cord
- Nerve pain
- Shooting pains, numbness, or tingling in the hands or feet
- Problems with short-term memory
“We assume that it’s a tick because I did notice a rash just above my knee after I had been… for a long period of time… outdoors, spending a lot of time with animals, that kind of thing. I just thought nothing of it because I have kind of sensitive skin… thought it’s just a rash, you know whatever, but we do believe that was a rash from a tick bite,” Kate said.
“Even when I saw the rash, it wasn’t a horrible bullseye, so I wasn’t even sure. It could’ve been many things… spider bite, ringworm, anything… so I didn’t know what that was,” Cheryl explained. “Even when she got really sick, I didn’t know the symptoms of Lyme Disease, so I think especially going into the spring and summer, I think it’s so important… I know kids love to be at the parks and the playgrounds and walking down the water by the creek bed… I think it’s just so important to just check them when they get back up to the house.”
“And animals, too, because ticks on your animals can spread to you,” added Kate.
According to the CDC, the summer months are when symptoms of Lyme peak.
THE COST OF TREATMENT: FINANCIALLY AND EMOTIONALLY
“Unless you have a chronically ill child, I don’t think you realize how stressful it is,” said Cheryl. “Not just on the patient but also the entire family. We noticed that with her two sisters. It was just a stress emotionally. Her sisters were feeling so bad for her because she was in so much pain. They didn’t know what to do for her. I would just take care of her, but the fact that nobody had any answers, I think that was just the most frustrating part. Then, the worse she got, I think the more stressful if you came in. I felt like our family became his own little bubble, because it was so stressful just watching her suffer with no answers that we kind of secluded ourselves.”
Many of Kate’s initial doctor’s visits, scans, and testing were not covered by insurance. Kate is no longer on any prescriptions; however, the more than a dozen supplements she does still take to deal with lingering symptoms have to be paid for out of pocket.
“One thing is awful about Lyme Disease is that the Lyme Disease doctors they don’t take insurance, so you might see someone for an hour or two and it’s $850 just out-of-pocket. That’s just tough in itself, and it adds up. The extra testing, the testing that they send out to California, that’s not covered. Nothing is covered,” Cheryl said. “There’s a lot of speculation about insurance companies, because when you have Lyme, you have all of these co-infections, so it takes a long time. These parasites are very tricky. They breakthrough the cell membrane. It’s hard to kill them, so it takes so long to treat Lyme Disease… all the infections… that I have heard that insurance companies don’t want to pay for that, because it is common to go to Lyme-literate doctor and spent two hours because they go through every single symptom.”
BEING PROACTIVE AND CELEBRATING VICTORIES
“We always have to celebrate the good things that were going on. All through this journey, it took so long for her to get better, but we would say, ‘oh she can take three steps now’ or ‘she’s awake more than an hour,’ so along the whole journey we just remain positive that someday she would get better,” Cheryl said. “Now look at her. She’s going to Ohio State University, and she wants to be a doctor. Yesterday senior night one of her favorite memories was finally getting to go to school full-time as a junior. I mean it had been since fourth grade. I know a lot of people heard that [and were confused], but for her dad and I… we were just overjoyed.”
“As I started going to doctors and was seeing how everything worked, I kind of was burdened by a lot of medical professionals and they really just didn’t… they weren’t really the what kind of doctors that you would want as your doctor. So I came to the conclusion that… if no one’s going to be a good doctor, then, I should be! I finally obviously did find good medical professionals who have helped me heal, but I think there’s a shortage of people that can really understand and sympathize with patients, and so I want to be that doctor,” Kate said. “I’m really excited for college, and I can’t wait to get started on the next part of my life. I really think it’s gonna go amazing.”