Living with Lyme: Mrs. Delaware 2015
As part of Lyme Disease Awareness Month, 47 ABC is taking another in-depth look at this illness, with a follow-up to our award winning Special Report “Tiny Tick, Big Controversy.” It’s set to air on Saturday, May 21st, at 7:30 pm.
“No one could give me a clear definition of what was really wrong. It was very frustrating.” Alina Pfeifer, Mrs. Delaware 2015, is a Lyme advocate and one of the dozens of first state residents who testified before the Lyme Disease Prevention Task Force last year. Their stories helped lawmakers draft the recommendations which eventually led to the creation of 2 new bills being considered right now.
House Bill 290 plans to give DNREC, the Department of Natural Resources and Environmental Control, the authority to address tick mitigation, similar to mosquito control. House Bill 291 would create an oversight board to educate health care professionals about tick-borne illnesses.
Alina says there is a huge need for “Lyme literate” doctors in the First State, “When I went to my primary care physician she barely knew what it was. She literally gave me a google print out and said, ‘Here, this is what Lyme is. Here’s your referral.’ And I was just like freaking out.” This was in October 2014, “3 years prior to that, I have been in and out of doctor offices for chronic pain and chronic fatigue. You name it.”
Alina recalls it was around the time she got married to her high school sweetheart, Mike, that her symptoms took an unbearable turn. Their wedding was July 26th, 2014.
“When we were getting married, we had a lot of stressors. I was going back to college. His dad died of cancer. And we’re planning a wedding. So it was like all this stuff wrapped into one.”
“By the time we got back from our honeymoon, that’s when everything hit the fan. And I woke up in excruciating pain, literally screaming in terror…I felt like someone was cutting off my leg.”
Alina says her knee swelled to the size of a softball. She says an orthopedic doctor put her on crutches until her test results came back, “Everything came back negative. and he was like ‘I don’t know what to tell you’…I’m just sitting there saying, ‘Well, it has to be something!”
Eventually, she was tested for Lyme, which came back positive. Alina also found out she has a number of tick-borne co-infections: Bartonella, Babesia, and Ehrlicia. She says she doesn’t remember being bitten by a tick. She never got a bulls-eye rash.
Alina said she sought out a Lyme literate doctor, who put her on a number of antibiotics. At one point, she says she was taking up to 20 pills a day, as well as B-12 injections for energy, to combat her symptoms.
“The worst is when the right side of my body is uncontrollable. It twitches like I’m going into seizures. I have no control. I can’t really speak. It’s just really hard because I can’t control anything on my body.
“That typically happens on the weekends, after I’ve been go-go-go throughout the week, and then it’s just, I finally sit and then it just all sinks in. But it can happen throughout the week as well.
“It’s like you poured cement in me and I can’t move and he’s got to carry me up the steps and put me to bed. You know, even going to the bathroom. There’s been times where he put me on the bathroom…just so I can go. I’m thankful I have him to support me.” Alina admits on the verge of tears. “Just to have that, and have him, and my mom, and all my other friends…It’s really special. And I can’t thank God enough that I had that in my life.”
Alina was on crutches for 3 and a half months because she couldn’t put weight on her right leg. She admits her first big breakthrough was not needing the crutches anymore, “That was a relief because my mother-in-law didn’t have to come pick me up for work and drop me off. My mom didn’t have to, or my younger brother. Or mike.”
Despite making some stride, Alina says she recently decided to find another doctor, and she quit taking her antibiotics cold turkey.
“I was just talking to my husband the other day,” explains Alina, “and I said, ‘How do I politely say that I’ve given up? Not on just life…but just on the whole process in itself.
“I feel like I’ve gotten worse on some of the medications, so I just got fed up, and I said, I don’t want to do this anymore.”
Mike Pfeifer admits it’s hard to watch his wife struggle, “Yeah, that’s the worst part. Just the physical aspects of it. Because she used to run marathons. And seeing her on the couch where she can’t really get herself a drink. That’s heartbreaking.”
Another heartbreaking aspect, how Alina’s health is affecting their decision to have children. Alina says the drug treatments prevented her from getting pregnant, but now that she’s off the antibiotics she admits she’s fearful of the chance that she could pass Lyme disease on to her kids.
“We’ve lost a lot in our families just recently, so that’s really important to us…to start our own family.
“You’re asking me almost, to just give this child Lyme. I live it. And I see (Mike) helping me, and I can’t imagine not being able to help our baby. Or the baby then growing older and presenting symptoms and to have him care for both of us…that thought is just really hard to seriously wrap my head around.
“So I have thought about, ‘What if we just adopted?” Or I have really great family. My cousin, she was like, ‘Well, I’ll carry for you.’ And it’s like, you know, you cry because it’s like that’s really sweet that someone would do that for you. But, it’s like, I just want to experience it. But at the same time, it’s like what are the benefits? and what are the cons?”
Because of her chronic fatigue, Alina admits she cannot drive long distances. The 26 year-old learned this lesson the hard way. After a day of volunteering for the Food Bank of Delaware, Alina says she fell asleep at the wheel, “I said, ‘Oh, I feel really tired,’ but I only live 3.5 miles away or so from the food bank. So I was like, ‘I’ll be fine.’
“Well, I wasn’t fine. I started driving…I put down my windows, cranked up the music, I was like ‘I’m almost home, I’m almost home’ before I knew it…I woke up in my airbag.
“I actually hit a co-worker of mine. And luckily she knew my story and everything, so she immediately didn’t care about the car accident, ran to me – and I had an angel somewhere because luckily I didn’t get hurt. The E-M-T said because I was asleep, my body was limp. I mean, the worst I had was bruises just from the seat belt.”
With this frightening experience now behind her, Alina is focused on getting her non-profit “Lyme Strong” up and running. The hope is that she can use her influence to help others, “I remember one time I posted and someone reached out to me…right before I went to Mrs. America…it was like, ‘You know, I really felt like I was going to kill myself. And seeing you go to this pageant, and to advocate, that gave me that hope.’ And I just hope that I can say or help someone and give them that hope.”
“Alina’s always been a force,” Mike said with a laugh. “That’s just her nature. When she has a goal, she’ll do it. Whether it’s marathons, or pageants…and now it’s first get yourself better…and then see if we can help anybody else.”
Alina’s message to those going through similar struggles:
“Never look at what you were. I think that’s what my self deprecation was about…I kept comparing myself to what I once was and not to where I am now. And I think that’s what people need to realize. That you are still you. You’re just a little bit different. And you just need to keep finding that new you…that new normal.”
We’ll have more details on the Lyme legislation Alina is fighting for in the state of Delaware, in our 47 ABC Special Report “Tiny Tick, Big Controversy 2”. It airs on Saturday, May 21st, at 7:30pm, right after Delmarva Sports Insider.