LGB: First off, do you consider yourself in remission?
Allie: I do. Though I still deal with symptoms that are related to issues stemming from Lyme/Lyme treatment, I think I have the tick-borne disease under control. Remission is a word that suggests that it will probably come back at some point. My life so far has been a series of healthy times and sick times. I have no reason to believe that won’t continue, but I do have a feeling that if/when I get sick again, it won’t be as bad as it once was.
LGB: When and where did you contract Lyme disease? Did you know right away that you were infected?
Allie: I was first diagnosed with Lyme disease when I was seven years old, in 1998. I had the most classic presentation of the disease. I had a tick bite. I had a fever. I had a bull’s-eye rash. I had a positive blood test. I was a textbook Lyme case.
LGB: Did you take antibiotics?
Allie: I did. I was diagnosed right away and was prescribed a short round of antibiotics. I can’t remember exactly how long it was, but I know it was much less aggressive than it should have been. Most doctors now recommend three to six weeks. I was on antibiotics for less than two weeks.
LGB: How old were you when your Lyme came back? What doctors did you consult? What treatments did you use?
Allie: My symptoms started to reemerge just as I began puberty (around 12 or 13). By the time I was 14, they were impossible to ignore. I was in constant pain and was even struggling to walk at one point. A local doctor in my town actually approached my parents to ask if I had ever been diagnosed with Lyme. She was the person who first re-diagnosed me. I was on and off oral antibiotics without seeing much improvement at all. Eventually, she put me on a daily IV. I’d go to her office before school every day for my treatment. It was both physically and emotionally exhausting. Just before my sophomore year of high school, we decided to leave her to go and see Dr. Raxlen, who was practicing in Connecticut at the time. My dad also had Lyme and saw much more improvement with him than I was seeing with the local doctor in town. Raxlen started me on a PICC line, and I finished up my longest and most aggressive round of antibiotic treatment with him that year.
Junior year of high school was my healthiest year since elementary school. I was off antibiotics and started working with a naturopathic doctor in Connecticut to build my body back up after all that treatment. He started addressing the candida issues and the massive nutrient deficiencies I had in my body. I was still in and out of his office for treatment all the time, but I felt healthier than I had ever been.
LGB: What was it like to be sick as a teenage girl? Did you tell your friends about your illness?
Allie: I was always a pretty shy kid, but it’s hard for me to know whether or not I was shy just because I was shy or if I was shy because of my experience with illness. I missed weeks of school every year, and even on days I was there, I was regularly missing class for doctors’ appointments or treatments. Even still I was really private about everything I was going through. I rarely told classmates about my Lyme. Only my closest friends knew what was going on day to day, and even they didn’t know the extent of my challenge with the disease.
I think I was afraid people would be grossed out by me or would think I was weak. I worried about how my swollen knees and ankles made my legs look fat. I worried about how pale I was or the dark circles under my eyes. At the time, I always played things off like I didn’t really care. I pretended like I was above all the high school drama and image-focused thinking. It’s only really in hindsight that I’ve been able to understand that confidence was a façade.
I felt best when I was in a play or in acting class. I wasn’t bad at it, which was fun, but I also got to play in someone else’s body, which I think I loved more than I knew at the time.
LGB: What led up to you being diagnosed with neurological Lyme and co-infections? What were your life and family circumstances at the time?
Allie: The summer before my senior year of high school, my father landed a job in Boston, and my family needed to relocate. I was finally feeling healthy and finally starting to get into the swing of things at school. My parents and I decided it would be best for me to stay in New York and finish school there. I’d live with a family friend in our house until it sold and would commute back and forth to see them whenever I could.
I was (and am) incredibly close to my family. And my boyfriend also left for college that summer. It was a pretty stressful time, and I didn’t really know the impact stress could have on my body.
That summer all my symptoms slowly started to come back. I was working at a camp, so I blamed them on the sun, on being out of shape, on not getting enough sleep, etc. Within just a couple weeks of starting school, I had my first major neurological flare. I was struggling to read, to write, even to speak. I was getting lost in the hallways of the same school I’d been in every day for four years. I was in six car accidents in just six weeks.
It became very clear that something was wrong. But, at first, it didn’t look like Lyme disease to me.
LGB: How did you view your doctors and what they were telling you at the time? Did you believe you were sick?
Allie: My parents got an appointment with one of the best pediatricians in Boston. In my mind, these people were the experts, and I didn’t know very much. They told me that it was physically impossible that my symptoms were related to Lyme or TBD [tick-borne disease]. And instead told me I was regressing to a stage of infancy in response to my parents’ move. Effectively, I was having a mental breakdown.
This did not resonate with me at all. I was certain that there was something physical going on, even if I didn’t know what that was. That certainty made me ignore a lot of my emotional experience and ultimately created this rift in my mind between physical and mental health.
Doctors told me it was either all in my head or all physical. I had a really hard time understanding how my mental health and my physical health influenced each other.
Still, all that thinking came much later. I was terrified and distraught by this doctor’s immediate dismissal of my symptoms as “all in my head” and started doubting my own perception of what was happening in my body.
Ultimately, I found out I was still dealing with Lyme and also with Babesia, Bartonella, and Ehrlichia. Once I got back to aggressively treating the TBD, I was able to start to see a light at the end of the tunnel again.
LGB: Were you still sick and undergoing treatment when you went off to college? How did you handle being sick as an undergrad? Were you able to graduate?
Allie: I’ve actually always felt relatively healthy since my senior year of high school, even when things aren’t as good as they should be. When I went off to college, I wasn’t nearly as sick as I was earlier that year, but I was certainly still symptomatic and was still on antibiotics. A few months into my freshman year, I went off antibiotics for a while and then back on that spring.
I did graduate on time from both high school and college with a ton of support from both of my schools and also by slowly learning how to take better care of myself and how to manage the waves of sickness and wellness that seem to shape my years.
LGB: What was your relationship to your body at this point?
Allie: I’m always working on my relationship with my body. My mind and my body feel so separate from each other, and I think the reason is that I spent so much of my time trying to ignore or hide how my body was feeling. College was no exception. I’m still working on trying to take care of both my body and mind and not just one or the other.
LGB: When did things start turning around for you? What do you think was responsible for the shift?
Allie: As I’ve said, I was (and maybe still am) in a pretty constant cycle of health and illness. I go through phases where things are fabulous and then phases where things are not. I am noticing, though, that the sick periods are getting farther and farther apart and are getting shorter and shorter.
There was a turning point for me when I started to change my lifestyle to accommodate my disease and also accepted the fact that this was something I needed to learn to deal with. It wasn’t something I could just wish away. I know it sounds weird and cheesy, but I think the biggest shift for me was when I really accepted my anger, accepted my disease, and accepted that it was my job to take care of my own body.
This all started happening as I was working on my book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial. I had the privilege of talking to many other people about their experiences with Lyme, and I think doing that helped me to accept my own.
I’m living a very normal life these days. I’ve been able to let go of so much of my grief and anger. In some way, I think that was holding me back from living the life I wanted to be able to live when I got healthy.
LGB: What are the top three things you did that you attribute to getting your life back?
- Antibiotics and Western Medicine: I am a firm believer that if you have an infection, you need to treat it as aggressively as possible. I attribute a lot of my success to the work I did with Dr. Raxlen on treating the infections and keeping them at bay.
- Supplements and Dietary Support: That being said, I also think that you need to make sure your body is strong enough to handle that treatment. For a long time, I didn’t take any supplements, much to my parents’ and doctors’ chagrin. Once I started down a more holistic path, I was able to do much better
- Acceptance: I couldn’t get better until I learned to accept what this disease did to my sense of self, to my body, and to my relationships. Once I could accept that, it was much easier to let go of some of the grief and focus on moving forward.
LGB: When did you stop taking antibiotics? Have you had any Lyme symptoms since then?
Allie: I was last on antibiotics in the spring of 2014. I had another neuro-flare in January of 2016 but was able to get my symptoms under control with strict diet changes, with the PK Protocol, and with tons of vitamin support.
LGB: Do you still maintain the lifestyle and dietary changes you made?
Allie: I should, but I’m not the best at it. Intellectually, I know and understand the importance of maintaining that lifestyle. But I’m still learning and doing my best to take better care of myself every day.
LGB: Are you afraid of a relapse?
Allie: I do not look forward to when I have to deal with symptoms again. I’m always afraid when I first feel them. But I don’t think I’m afraid in the bigger picture. I am armed with so many resources, so much information, and so much support. I truly believe that if I do get sick again, I will know what I need to do to get healthy.
When we go through this awful disease, we don’t come out with nothing. We come out knowing ourselves much better than we did going in. I think that is an incredible weapon we can use against illness. And so, no, I’m not nearly as scared as I once was.
LGB: Do you have your full energy back?
Allie: On my good days, I am operating at pretty much 100 percent. That being said, I do need to be very careful about running out of gas. I’m doing a million things at once right now. I tend to accelerate as fast as I can, and then I end up hitting a wall. My crashes are still pretty bad, but they’re also getting better.
LGB: Do you still think about Lyme and/or illness? What is your relationship to illness in general?
Allie: I still think about Lyme and illness every single day. But I think that’s because my work is so directly tied to it. If I wasn’t working in this space, I don’t think it would take up as much of my brain space as it does now.
LGB: What are you doing now that you have your life back?
Allie: I run Suffering the Silence, an organization dedicated to leveraging the power of art, media, and storytelling to raise awareness around life with chronic illnesses. We encourage people to speak up about their experiences in an effort to ultimately break down the stigma that so many of us feel every day. I get to travel all the time with STS, and I am also still writing quite a bit. In October, I also got married to my boyfriend of ten years (we met in high school!) and it was amazing to reflect on everything we have been through with Lyme, and how far we have come.
The content of this interview is not intended to replace the advice of each reader's own medical professional nor is it intended to diagnose, treat, or cure any illness or medical condition. When making healthcare decisions, such as stopping or starting treatments or medications, please consult with a licensed medical authority.