Partner in Lyme
Unexpected Blessings of Lyme
When I (Gillian) first starting volunteering with Partner in Lyme, Jess and I had a long conversation about the importance of sharing a narrative of hope and celebrating stories in the midst of chronic illness. From that conversation this interview series was born! On the blog, we’ll be talking to people from all stages of life about their journey with Lyme, not only discussing their diagnosis, but also the treatments, silver linings, and unexpected blessings that fighting Lyme has presented.
This week we are featuring Erin, who I had the opportunity of video conferencing. Erin was first diagnosed with Lyme in 2o11 and ever since has been an active member of the Lyme community. She shares her experiences with both tenderness and humor on her Instagram page @beatingbartonella. This was our conversation:
Q: Could you start by just telling us a little bit about your Lyme journey? When did you first get your diagnosis?
A: I was first diagnosed around 2010, 2011. I wasn't feeling right at work and was sent home by our doctor on site. I saw my GP later that day and happened to have on shorts. During the appointment, he goes, what's on your leg. And I was like, Oh, I don't know, I think it’s from my water bottle. It's like not a big deal. He replied, no, that looks like a bullseye rash. It was a perfect circle rash, just a ring. He diagnosed me with Lyme disease. He prescribed me two weeks of amoxicillin (I'm allergic to doxycycline) and then I started pursuing infectious disease doctors. My dad had Lyme disease when I was little, and I knew how serious it could be, so I went to two infectious disease doctors. I finally managed to convince one of them to prescribe me an additional two weeks of antibiotics, but both dismissed me for having Lyme. It's interesting because the ring rash that I had, only lasted five minutes and by the time I walked out of the office it was gone. After that I figured everything's fine, I'm not sick. Looking back, I never “stopped having Lyme”, I was still sick. I just learned to live with it and frankly, ignored all my symptoms until I couldn’t. In 2014, I went on vacation with my family and I was bit again. I never saw the bite, but exactly three weeks to the day after vacation, I woke up and was beyond exhausted. I could barely brush my hair to get ready for work and ended up calling out. I started to rapidly decline and had horrendous nerve pain, anxiety, debilitating fatigue and then cognitive and neurological issues. I stopped driving for fear of not being able to react appropriately and hurting someone. I began pursuing a diagnosis trying to figure out what was going on. I thought maybe it was just a virus or just a fluke that will magically go away. I went from doctor to doctor. My GP immediately told me that I was negative for Lyme and Mono. When I asked him what was next, he told me he didn’t know. So, I went back to infectious disease and pretty much called everyone I know who works in the medical field. Because then, you know, what do I do? I had appointments booked with rheumatologists, neurologists, endocrinologists, other GPs. I had appointments with a neurologist who ordered an MRI to rule out MS. Around this time my dad was talking to a friend whose daughter had neurological Lyme Disease and he felt my symptoms were similar to his daughter's. I managed to book an appointment with her doctor in late November. By then I was working from home full time because I couldn't commute, and I needed a mid-day nap (I’m beyond lucky that I had such a supportive boss and team). That appointment I had iGeneX testing done and was diagnosed the first week of January. I was diagnosed with Lyme Disease, Bartonella, Babesia, Mycoplasma, and Epstein-Barr.
Q: What has been your favorite or most effective treatment?
A: Most effective was IV Rocephin for me. That was groundbreaking. Also, when I first saw my Lyme doctor, I was in such cognitive decline with Bartonella that I was having tremors and I wasn't remembering anything. I was put on Azithromycin and that stopped my decline in its tracks. It was actually amazing looking back. So, for Bartonella that was a very effective drug in helping my improvement. IV Rocephin really pushed me along because I had plateaued on oral antibiotics.
Q: What is the biggest way that Lyme has impacted your life:
A: The biggest impact is probably that it has really opened my eyes to the relationships in my life. I immediately learned who my true friends were and who was going to be there for me, who were my “ride or dies.” It also has made me really value my relationships. I've made a lot of friends through having Lyme. Not really the way I want to make friends, but it's been a silver lining of Lyme. I'm really grateful for that. Lyme has also changed my mindset a lot. Before I was very focused on work and my definition of success was very different than it is now. When I go back to work, I'm going to be very focused on having a balance between work and play. Where pre-Lyme I was work, work, work, now health really is wealth. I don't think I would have had such an appreciation for the small things in life and for the big things too, like vacations and, being able to go out with friends. So, it's given me a bigger appreciation for life in general that I wouldn't have had otherwise and that I really do appreciate from Lyme. I think it's one of the silver linings.
Q: If you could go back in time and give yourself a piece of advice at the beginning of your Lyme journey, what would that piece of advice be?
A: Know that it's going to suck but keep going. Take joy in the small things and try not to set a timeline for yourself. Be easy on yourself. I was very hard on myself when I first got sick but remember this isn’t your fault. This is not something that you asked for. It's not something you wish for. So be easy on yourself.
Special thanks to Erin for sitting down for this interview. Your story and wisdom are a valuable resource to the Partner in Lyme community and those in the midst of their fight against Lyme. To follow along with the rest of Erin’s Lyme journey, check out her Instagram account @beatingbartonella.