This Family Battling Lyme is Giving Back to Their Community

PW Contributor Alexis Plofchan is 22 years old and a student at William and Mary. She and her parents have been fighting Lyme disease for the past eight years. In Part 1 of her interview, she detailed her diagnosis and treatment journey. Now, she lets us in on the affects Lyme has had on her entire family, including her two older brothers.

“Although I was diagnosed first, Lyme became a family affair a month later, when my dad was diagnosed, followed by my mom a year or so later. My brothers were out of the house at this point, which left the three of us dealing with Lyme as a trio. Every conversation we had at that time was about Lyme because we were going through it and learning how to live with it together. We were each other’s sounding boards and support systems, and our lives separately and together became consumed by it.

My mom was really the one that handled everything for all of us, especially because she wasn’t diagnosed until a year after my Dad and me. My doctor describes it best— she says in my first visit with her I was dead in the eyes. She tells me, ‘I kept asking you questions and you would turn to your mom for the answer.’

Granted, this was partly because of my age, but for a couple of years I was too sick and unaware of what was happening to handle simple questions from my doctor.

Looking back, a lot of that was because of my memory issues at the time and because I had a tendency to lose track of time; all caused by Lyme. I would say, ’I haven’t been sleeping for 3 weeks,’ and immediately my mom would interrupt and say ‘it’s actually only been 4 days.’  My mom was the one who was constantly looking for doctors and new forms of treatment, while I just trusted her and did what I was told since I wasn’t able physically and mentally to be as present. She is the main reason that I ended up getting the treatment I needed- she never gave up in finding what would work.”

Not only was Lyme (understandably) the topic of conversation most of the time, but just the presence of it could often have negative effects on each person in her family’s health.

“Lyme consumed our lives completely, and even being at home equated to a depressing environment. When I took a semester off last spring, I considered living somewhere else because I thought that if the environment wasn’t helping me get better, I felt that it may have actually been preventing me from being emotionally and mentally in the best place. For example, if one person felt good on a particular day, two others might not, which could bring down the healthy person.”

Alexis admits that although there are advantages to having family members around who can empathize, it’s obviously very challenging to watch those you love suffer.

“The two of them are the only ones who can relate to me on an actual level.  That part is great – and I cherish the ability to have people around me who fully understand what I am going through –yet the situation is also horrible, because your family is sick and you can’t get away from it.”

Alexis also has two older brothers, both without Lyme disease, and this has no doubt affected each of them.

“They both very much understood just how toxic the environment at home was for me and for my parents. There were many conversations on what all of us should do because everyone had their own opinion about what was the best plan of attack. I think that was Tommy’s way of helping the situation—trying to figure out how he could help all of us individually. He would always check in on me to make sure I was holding true to some of the goals and restrictions I had set for myself. As I look back over the years and try my best to put myself in their shoes, it was hard for them too- more so then I can probably imagine. When it was consuming all of our lives, it crept into their lives.”

Tommy, the oldest, has been a crucial support for Alexis.

“Tommy had to see doctors in the year or so after he was affected with mercury poisoning while studying in Egypt. I can’t say for sure, but I think having to go through that helped him understand what was going on with us better. Once he was doing a little better, he really got more involved.”

As part of his treatment for mercury poisoning, Tommy switched to a paleo diet and after some time, saw the positive affects that the switch had on his health. He then used this method to help Alexis in her treatment. This actually helped her to track her symptoms more closely and to be more aware of what her body needed.

“Tommy came to me around Christmas of 2013 and said ‘Hey I want to help you with your eating and want you to do paleo with me.’ I was gluten-free at this point, but still wasn’t eating the best or really sticking to being gluten-free as much as I should have been. So I did paleo with Tommy’s help for six to nine months, and it was a very, very good thing for me to do. I cut everything out of my diet but veggies and meat and then slowly introduced everything back in.

It really helped me learn exactly how to be in touch with how my body worked and to help notice what foods made my symptoms worse- ultimately it gave me more control.

Until then, and especially when I was still eating gluten, if I had a symptom I would think ‘Is this Lyme? Is this stress? Is this because of something I ate?’ But now, if my back hurts and I feel like I am 90 years old when I have only eaten clean food, I know it’s not what I ate and that it’s 100% Lyme.”

Andrew, the youngest of Alexis’ older brothers, has had a unique perspective on this whole ordeal- especially during the time when he was the only healthy one in the family.

“Andrew helped in his own way. In many ways, he kept me going because through it all, he always brought with him a sense of humor and energy. He kept me laughing and was a constant reminder of what normalcy was.

Andrew and Alexis
Andrew and Alexis

Both of my brothers obviously sympathize for all of us. However, there is something to be said about having the same experience that enables you to actually understand it. My mom once said that she’s glad she got sick because she said there was only so much she could do and understand before. And until she actually felt it, she couldn’t actually understand it.”

When one person in a family has Lyme disease, navigating the complexities of the disease is incredibly demanding on time, energy and patience. But because Alexis, her mother, and her father have it, it’s an even more formidable task. It requires prioritizing getting better, while supporting those around you, all while being able to ascertain when to let your family know when you need help without making them sicker. Alexis describes the dissonance she felt when she needed her mom, but also wanted to look out for her mother’s health.

“For two years my mom wasn’t completely addressing her illness—the first year or more of me being sick, she wasn’t even diagnosed. Mom was not putting herself first by any means. That’s par for the course because of who she is and because she is a mom, but that’s not ideally what should have happened.

My mom and I are best friends and I tell her everything- that was the case even before I was sick.

I remember my freshman year of college when my symptoms were really, really bad- I wasn’t handling it well. I constantly texted my mom, every day. I am a very independent person, but because of Lyme disease, I did not go to college and do the typical ‘gain more independence from my parents’ thing. I would call her about every symptom or issue that was happening. I was worried about it all and needed someone to express that worry to. But that wasn’t good for my mom because her personality is such that she takes on everything I am feeling and worries about my problems as if they are her own. This is a quality I admire and never want to make seem like a negative thing; however, when she is battling her own fight with Lyme, the added stress from hearing about how I am not doing well does not help with her ability to focus on her own health.”

Of course as one might predict, Alexis’ brother brothers and dad offered their support in order to make it a bit easier on her.

“I remember being outside of my dorm one day when Tommy called to tell me that ‘Before you call mom you need to call me, Andrew, or dad.’ My immediate response was, ‘But you’re not my mom!’

Tommy, Andrew and my dad all had gotten to the point where they knew they needed to help me adjust and spread out who I reached out to, for the sake of both me and my mom. I learned that often times, my dad and brothers approaches were beneficial in their own ways. It took my brothers and dad challenging me to reach out more to them, for me to realize that their responses being different than my moms wasn’t a bad thing.

My mom is the strongest person I know and even though I know she could have handled the amount with which I initially depended on her- there was no reason for it all to be put on her shoulders.

I have become much better at not calling on my mom, or anyone for that matter, as much, and only call at the very last minute when the situation warrants it- which is good for both of us individually but also for our relationship together.

Though this method helped Alexis gain more independence and look out for her mom’s health, there is no “perfect” way to go about dealing with Lyme as a family. It definitely took her and her mother some getting used to. Both of them being sick has shifted the mother-daughter relationship many times but they are learning, which is a natural part of dealing with an illness.

 “In a perfect world, if she could be there for me every single time my health got me down and not have it negatively affect her health in any way; I think for her that would be ideal because she always wants to be there for me. But honestly it’s been good for me to be much more independent, and frankly, Lyme is so all-encompassing and overwhelming that it is impossible for someone to manage their own treatment, and that of two other people, alone, despite a nearly indescribable amount of love, compassion, and strength.

As we’ve each gotten better (and I’ve gotten older), our relationship together and in regards to Lyme has evolved. This year I have been doing much better. At one point I remember calling my mom and saying ‘I am sorry I haven’t been calling and texting as much, I have just been busy.’ Her response shows just how far we have come. She said ‘In a way, I am happy when you don’t call and text about Lyme – it means you are doing better and that is all I want!’”

If you are at all familiar with chronic Lyme disease, then you know that battling it is a daunting financial task. As a part of the positive energy they are trying to continue to create, the Plofchan’s have since created the Westlake Foundation, a charitable foundation which allows all five of them to work together towards common goals.

“The way I would describe it is a foundation to give back to and help aspects of our society and the community that we see as under appreciated. Every year we decide which organizations we want to support through charitable giving and co-sponsored events.”

The family recently put on a fundraiser event at the Gold Cup Races in the Washington, D.C. Metro Area, proceeds going to the National Capital Lyme Disease Association.

Alexis and her family at the Gold Cup Races this year.
Alexis and her family at the Gold Cup Races this year.

“For instance, the [races were] our first big fundraising event. As a family, we wanted to support awareness of this disease and thought that it was also important for people close to us to see a little bit into what it has been like battling Lyme and better understand why we want to focus on combating the disease.

I am excited about the Foundation because I think it will be cool to see what good we can do together. All five of us have very strong personalities that can get a point across pretty well! Putting the five of us together on one thing we are all passionate about will hopefully start a conversation within our little bubble of the world. Being able to start the conversation about what Lyme disease is, how it can be prevented, and how it can be treated is something that we have the ability to do in our little space.”

Alexis continues,

“I cannot imagine the last eight years without my family.

I will forever be thankful to my parents and brothers for their support and will forever be thankful we have had the ability to pay for the treatments and doctors that we have seen, who have helped get us to where we are today. To think that there are people who know what illness they have and can’t afford treatment in order get better—it is heartbreaking and something I know later in life, I want to be able to address and help in whatever way possible.”

With all of Alexis’ trial and error in treatment over the years, it’s extremely inspiring to witness her and her family’s refusal to give up or give in to the disease. Stay tuned for Part 3 of Alexis’ interview, detailing how she’s managing young adulthood, relationships, and demanding schoolwork, all while tackling Lyme disease.

Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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