Q&A with author Jana Steck about Lyme disease

In this first Odyssey of the Body interview, I talk with Jana about her experience with Lyme disease, the swirl of emotions sparked by a diagnosis, the solace of Epsom salt baths and writing, and more

Hello! We have a handful of new readers, so welcome! I’m glad you are here. The Odyssey of the Body newsletter explores the experience of illness and wellness, and the tools and information that can help. On Wednesdays, I send out a collection of 3 interesting health-related things I’ve run across lately. On occasional Sundays, I sent out a longer essay or interview. I learn so much from doctors, nurses, and researchers, but there is a side to illness and wellness that can only be fully understood by experiencing it. Patients carry a special wisdom.

I’m excited today to share the first Q&A in the Odyssey of the Body newsletter. In this interview, I speak with a dear friend, Jana Steck, who has written a memoir about her experience with Lyme disease. “The Battle Within: My Lyme Story” follows Jana’s life from childhood through her training and career as a ballerina to the diagnosis and difficult treatment of Lyme disease. It’s available in print and ebook formats. Jana also blogs on her website, UnitedByLyme.com, where she shares her experience in hopes that other people with Lyme disease will feel less alone.

A little background from the CDC: Lyme disease is caused by a bacteria transmitted to humans through the bite of an infected tick. Early symptoms can include fever, headache, fatigue, and a rash. (Not everyone gets the bull’s eye rash commonly associated with Lyme disease.) If left untreated, the bacterial infection can spread to the joints, the heart, and the nervous system. About 476,000 people are estimated to be infected by Lyme disease each year in America.

As with all illness — and wellness — each person’s experience is particular to them. This newsletter does not contain medical advice. Please seek out a healthcare professional for medical questions or concerns. If you know of additional resources for Lyme disease that would be helpful, I would be grateful if you would share in the comments.

Thank you! — Brianne

Brianne: Your journey started a long time ago. Could you talk about how it began, when you first realized you were sick?

Jana: I think it's important to say, first of all, that I can't honestly say for certain when I actually contracted Lyme disease. Having the experience now of knowing what the symptoms are and how they manifest over time, I do believe that I've had Lyme disease since I was very young, possibly 5 or 6 years old.

I have memories of illness from a very young age that are indicative of Lyme disease. I was having chronic urinary tract infections, which is a fairly common symptom of Lyme disease and fairly uncommon for a young girl. I remember being tired most of my life. I know my parents took me to the doctor a number of times and tested me for things like anemia/iron deficiency, diabetes. None of these things ever came back [positive].

When it really started to get scary for me was in my mid-twenties. I had this bizarre period of time where I was really dizzy. Thankfully, I had good insurance at the time and did a gamut of tests. We did a tilt table test to test my blood pressure. I had a heart monitor on for about a week. I was tested for MS (Multiple Sclerosis), tested for a hole in my heart, had major inner ear tests done to see if I had some sort of imbalance going on there. All of these came back negative.

Jana Steck

And then, within about four months, I stopped getting the dizzy spells. They just went away! That's another thing that's fairly common with Lyme disease — symptoms can appear and then just go away. Part of that is your immune system and its ability to fight off the disease, as I understand it.

When it really exploded for me was about 2016. I had a series of pretty major symptoms that I couldn't ignore anymore.

I think part of me for most of my life knew that I was sick. And I was afraid because I had a feeling that it was fairly serious, and so I, kind of, just didn't want to know, you know? I was afraid it was something really bad. And also, due to the health system in this country, I honestly was afraid financially I wouldn't be able to treat it even if I was sick.

That’s such a horrible part of our healthcare system in the U.S. In your book. there's a part where you talk about when you're told you have Lyme disease and how you feel this terror and dread, but you also feel relief and justification. Could you talk about that, the mix of all those feelings?

To some extent, I feel I have this ache in my heart that I've just never been good enough. No matter how hard I tried, I just couldn't succeed. I would get a good job and be doing really well, but then over time, my body couldn't take the strain of it.

When I was finally diagnosed, there was this huge relief, of like, Oh my God, thank God I'm not this loser at life. There IS a reason why I have struggled so hard to just get through a normal day of work. And so there was a validation in that. It was a huge relief to finally have an answer and a title, something that I could say, This is why I've been struggling so much: I have Lyme disease. I have this bacteria that has been slowly eating away at every organ and system in my body since, I don't know how long, possibly, since childhood. And so that relief was heavily mixed with a fear and a dread.

It was an interesting dichotomy for me because I really didn't know anything about Lyme disease. And I think that's true of so many people. I knew it could be serious. I had heard of folks being hospitalized, but I didn't know how debilitating it could be.

I thought that for the people who were hospitalized, it was sort of like pneumonia. Some people get pneumonia really bad. They go into the hospital and they get better in a week or whatever, some IV fluids, and everything is fine. That was what I thought Lyme disease was. That, or like a really bad flu. You were sick for a week, and then you were better.

When I got the diagnosis, I was shocked at how terrified I was. Why am I so afraid of this?

I had a gut feeling that this was going to be really hard, and it was going to be a really long battle.

How would you describe it to someone who also doesn't know much about Lyme disease? What is the treatment like? It can take a long time.

It can. I think it's important to say, up front, for anybody who reads this or sees this or hears it, that it really depends on a number of factors. It can be very different for each individual depending upon where the bacteria has taken up residence in your body and how long it has been there. It's important to say if you get bit by a tick and you find it, and you immediately go to the doctor and get antibiotics, then, chances are, you might be sick for a couple of weeks but with early treatment you’ll get better.

However, if it goes undiagnosed, as it does for so many people, then it can take a long time to treat. The longer it's in your body, the Lyme bacteria can take on different forms that are really good at hiding in different areas of your body and also really difficult to treat.

So for me, my treatment was about 2 to 2 1/2 years. I was on antibiotics the entire time, and depending upon which symptoms were the most obvious or flaring at the time, my doctor would choose antibiotics that treated those specific areas. So about every two months or so, she would put me on a different antibiotic. It's scary because as those antibiotics and those medications attack the bacteria, it releases toxins, which causes many of your symptoms to get much worse before they get better. It takes a long time, and it's scary.

There's very little knowledge out there. I think it's actually gotten quite a bit better in the last five years since I was diagnosed. But I had a difficult time finding other people who were experiencing what I was experiencing. And so it was very lonely and it was very scary.

I'm sorry you went through it, Jana.

Thank you.

You mentioned that it helps to find a Lyme-literate doctor, to find someone who really knows a lot about the difficulties of Lyme disease. Is it a blood test, is that right, to ultimately get diagnosed?

It is a blood test, yes. I'm not a scientist, I'm not a doctor, but from what I understand, it can evade blood tests because eventually that spirochete, that bacteria, goes into muscles and bones and eyes and brain tissue. And so it may not at all times be present in bloodwork.

The very first thing you should do if you suspect you have Lyme disease is to find a Lyme-literate doctor. They will know what test to order. Most of the medical community, Western medicine, isn't fully trained in how to treat Lyme disease. It can affect so much of your body, which has a ripple effect, and ultimately it ends up acting like an autoimmune disorder.

I ended up having serious adrenal fatigue. My adrenals were barely functioning. It attacked my hormones, my reproductive system, my bladder, my eyes and my ears. And so a Lyme-literate doctor is going to be aware of the full gamut of symptoms and how to treat the whole body and not just try to kill this one form of the bacteria.

As if it wasn't challenging enough.

Yeah, exactly.

What are some of the other things that helped other than the antibiotics? I remember you were writing about your Epsom salt bath and how powerful those were.

The Epsom salt baths were medically prescribed as a way to pull toxins out of my body as the antibiotices killed off the bacteria, and to quiet down the Herxheimer reaction.

I eventually found those baths to be not just medically helpful, but a time for me to feel like I had power over my disease and what it was doing to my body. I think that's a big theme throughout my treatment — feeling powerless and feeling like a victim.

When I took a hot bath, I made a switch mentally to not be a victim, but to be a fighter and a warrior. To gain some control and some power over what was happening. I would lay in the bath, soaking in the Epsom, and imagine the bugs coming out of my pores, and I would tell them to go away.

I would thank them for what I was learning, because people tell you, You should be grateful (laugh), but then I would tell them, much like you hear an exorcist tell the demon in a scary movie, that they're not welcome here anymore.

You can't be here. I want you to leave. Get out of my body. Go away.

That was definitely one thing that made me feel like I had power over what was going on.

I never heard about the Herxheimer reaction before I read your book and another book from someone who had been diagnosed with Lyme disease. (The Herxheimer reaction occurs in patients with spirochetal infections when they are undergoing treatment to kill those bacteria, such as antibiotics.) Could you describe what it feels like and how long it lasts?

Most of the time when I would experience a Herx, it felt like I was having a heart attack or like my body was just shutting down. I would start to tremble really badly in my whole body. Oftentimes, I felt like my heart was racing. I would get really light-headed and dizzy.

Later in my treatment, when [my doctor] started treating my brain, I was having a lot of difficulty with word recall and memory loss. I remember, in particular, one really bad day, I called the doctor's office because I was really afraid that I was actually having a heart attack or something was really wrong and I couldn't get the words out to explain to them what was happening.

It's a particularly scary part of Lyme disease. Really I think that that's probably the worst part of it — and it's just a reality. Your body is constantly ridding itself of toxins as you're killing off this terrible bacteria, so you're going to have that reaction.

At the very beginning, when you first were diagnosed, you went out to get two things. Your doctor directed you to go on a paleo diet, so there's a part in the book where you go with your boyfriend — now husband — shopping to buy certain foods and you get very frustrated. And then you also buy a journal. And I wonder if you could talk about that, how that played a role in processing or recording your experience. Did you find that helpful?

The journaling? 100%. My doctor suggested it for tracking symptoms. And particularly in the beginning, I was having a low-grade fever off and on throughout the day — 90, 99, 99.5, 100, on occasion 101. So I was tracking my temperature, as well as a large amount of symptoms. I probably had a list of about 80 symptoms to begin with.

But as time went on, I spent a lot of time alone because my husband was at work. Monday through Friday, I was home alone. And depending on where I was in treatment, my mind would ramble, and I was just so scared all the time.

So I started writing these things down, and it was cathartic to get it out. I didn't have anybody really to talk about what was happening to me. I mean, I could tell my husband and he was great and understanding to the best of his ability, but I certainly didn't understand when I started treatment how scary and difficult it would be.

I knew that there was no way possible other people could understand what was happening. And so I wanted a record of how scared I was and how wretched I felt and what was happening to my body. And the fear.

I talk in my book about one day in particular when I took my dog for a walk. I was incapable of walking long distances, especially in the heat, which felt sapping. The heat would take everything from me. But for some reason, this day I ended up like a block and a half from my house.

And all of a sudden I felt like I was going to blackout. The heat felt like a heavy blanket. I couldn't stand any longer, and I was shaking and trembling and my heart felt like it was racing — that sensation you get when it feels like all of the blood is just draining from your body. And I thought, Oh my God, how am I going to get back home? I'm not going to make it.

Back on the day when I got the diagnosis, I had watched the documentary "Under Our Skin" [about people with Lyme disease] at the suggestion of my doctor. I remember so vividly this image of one woman in particular who was walking in her front yard. You could just see the determination, but also this fear and the weakness. And my heart kind of stopped then. I was thinking, Oh my God, is that what this is going to be like?

When I was on that walk with my dog, I thought, Oh my God, that IS what it's like. It was such a terrifying moment. There were cars going by, and I remember staring down people as they were driving by, hoping that they would see the fear and the desperation in my eyes and they would pull over and offer to give me a ride home. And of course, nobody did.

So I started walking in the grass along the sidewalk because I was afraid that if I did pass out that I would fall on my head and further injure myself. I was walking just one step at a time until I could get home.

And I made it.

But that day definitely sticks out like a huge throbbing sore thumb in my memory.

It must have been so frustrating. A lot of times when you get a diagnosis, there's a treatment and there's a course where, you hope, every day it's a little easier. But it sounds like with this, it got much harder before it got easier. Did you have a turning point where you started to realize, I am going to get out of this, or is there a stamp on day where the doctor said, you're in remission now?

There are memories that signal a turning point. My husband and I started going to trivia night once a week, which was a big deal. My brain was still too discombobulated and jumbled for me to be any good at trivia night. But just the fact that I was able to get out of the house and sit at a table and not feel exhausted by it was so exciting for me.

And the first time I went for a bike ride. Being able to go for short walks in the woods with Oliver, my dog, and my husband. I see turning points.

It took much longer than I ever would have imagined that it could have.

And then I, in fact, did have a doctor's appointment where my doctor said, Yes, you are in remission. You can stop taking antibiotics — finally! — and we'll just monitor you. So that was a great feeling.

Let's shift to the book. At what point did you decide, I'm going to actually put this into a book and publish it?

Fairly early on. I was still in treatment when I decided I wanted to write this book. It started out much differently. My initial thought was to write a children's book or at least a young adult book. And I had that version; it was about 40 pages long, and I even sent it to an editor to have it edited and was moving forward with it. Some of her comments forced me to dive deeper into certain areas.

Eventually, I realized that this wasn't a children's book, at least not yet. I still have in mind to someday write something for children because there are a lot of children who are also suffering through this.

I've always loved writing. At about the age of 25 or so, I had the aspiration to write a book. I always wanted to write a fantasy fiction book. I never thought that it would be about something so deeply personal and painful.

Again, I think it made me feel like I had some control or some power over what was happening to me. At least I could take these experiences and the pain and the fear and hopefully help other people who are going through the same thing. I want others to realize that they aren't alone. That when you wake up and your tongue is black, it's okay! Somebody else has experienced that. Because it's really scary when you wake up and look in the mirror and you have a black tongue! I mean, I think that would be frightening for anybody.

At that time, I could Google, “black tongue” and “Lyme disease,” and I might get one hit of somebody that kind of sounds like they had something similar, but it was just really a lonely, lonely battle. And I want other people to not feel so alone.

Writing was also something for me to do once I was finally to that point where I could actually take a shower without my husband being home and get dressed without feeling exhausted. I would put on real clothes, not pajamas, and go to the coffee shop to write. It was sort of a treat for myself, as well. I had a purpose again.

I think it’s also important for the general public to understand what it is to battle Lyme disease.

That's a really amazing accomplishment. You finished it.

Thank you.

Can you describe the program you used to publish your book?

It's super easy. It's an awesome program. You go to Draft 2 Digital; you sign up and log in. There's no fees, there's no upfront cost. They have a program where you upload your manuscript. It formats it for you into a book. You have to have your own cover art and upload that, and there's a couple of questions, and you hit publish.

I'm making it sound extremely simple. You do have to write a biography for yourself, and you have to write the marketing for the back of the book, which is much harder than one would think, to write a synopsis of your own book. You have to provide a photo and that type of thing, and decide where you want to price your book.

But once you make all of those decisions, it's really quite simple.

Back cover of The Battle Within by Jana Steck

And then they handle the sales. You don't have to buy a bunch of your books up front. It's print on demand. They take, of course, a commission from the price of your book. But once I found them, I wish that I had known about them upfront, because I spent weeks and hours and days researching other avenues. For a while, I had considered submitting it to publishers and seeing if I could get it published. But this was the avenue that worked best for me.

Do you have any last advice or reflections or thoughts you want to make sure get shared? I know there's a lot we didn't talk about — your path as a ballerina, your later diagnosis of PTSD. People can find much more on your blog, UnitedbyLyme.com, and of course, in your book.

I think if I leave people with anything, it is: Don’t ignore symptoms. I don't care what they are and whether it's Lyme disease or cancer or whatever. Don't ignore your symptoms. Don't let them get worse and worse, which is what I did.

And if it is determined that you have Lyme disease or you suspect you have Lyme disease, find a Lyme-literate doctor.

Thank you, Jana.

Read more about Jana’s journey on her website and in her book.

More resources:

• How to find a Lyme-literate doctor