How long have you had Lyme disease? What were/are your symptoms?
I first felt off in university when I began having reactions to foods I had been eating my whole life. I didn’t have the energy to complete classes and do activities after school. After growing up playing multiple sports at once, I knew something was off. I ended up moving to Kelowna to take a Holistic Nutrition program since I noticed eating certain things would make me feel worse or better (now understanding inflammation, it makes a lot of sense). A friend of mine had a tick on him and we joked about Lyme, after doing some research about Lyme, I asked my doctor to test me for Lyme and I came up positive on the Canadian test, which is very rare. The symptoms started out minor stomach problems...and fatigue but over the they expanded to include vision problems...and a need to nap every afternoon. I saw a total of 5 naturopaths and other MDs and tried different treatments over the years.
How did Covid affect your Lyme disease?
I was extremely run down working every single day (13-16 hours) in a busy restaurant since the pandemic hit, so I knew I was already running a risk of my Lyme returning. When Covid hit me it was the first days I had off for the summer, so I wasn’t sure if it was all Covid or my body trying to catch up on months of rest. I have my body dialed in and knew I was pushing a little too hard. Once I got sick with Covid I never went back to normal. My MD checked my lungs as I was still having breathing issues and explained it was Air trapping, an abnormal retention of air in the lungs where it is difficult to exhale completely. I thought it was Covid running its course until I felt like it was matching my Lyme symptoms a little too much. My naturopath retested me for Lyme, babesia and mycoplasma pneumoniae, and sure enough Lyme and pneumoniae came back with a weak positive.
Run down of my initial daily symptoms
Day 1 – runny nose/dizziness/fatigue
Day 2/3 – Fatigue/Migraine/Nausea /muscle aches began and never ended
Day 4/5 – Extreme Fatigue, air trap (coughing for air) – Still present 2 months later
Day 6 – Frost bite feeling in hands and feet followed my extreme cold (still present 2 months later)
Day 7/9 – Burning in my nose/extreme fatigue/dizziness
Day 8 – Could get out of bed for small spurts
Day 9/10 – Extreme fatigue bed ridden
Day 11 – Back at work – dizzy spell – trouble breathing
Day 12-15 – General fatigue and weakness trying to carry things
What has this time been like for you living through a pandemic with Lyme?
I fully healed from Lyme a few months before the pandemic, so I was extremely excited to live a normal life, work a full-time job and get myself out of medical debt. (Which I was fortunate enough to do throughout the pandemic! Yay!) When the pandemic hit, I initially felt isolated, defeated, scared, angry and many more up and down feelings. I had PTSD feelings of what it was like to go through Lyme and the fear of it coming back. I was terrified Covid would flare it up, and deciding what to do was very stressful. When I first started my healing journey, I promised myself to avoid negativity but it was impossible managing a restaurant as some people wanted to express their feelings towards the wrong people this past year. Fortunately, I found it helpful to focus on the stress coming from rapidly changing pandemic rules rather than from possibly getting sick again.
Have your friends/family been understanding and supportive of your health concerns during this time?
Yes and no. It is a worldwide pandemic, and every single individual is having a hard time in some way, whether it be emotionally, financially, or physically. Lyme has always been a very isolating disease as few understand it and trying to re explain it I wouldn’t expect people to truly understand. When I healed from Lyme I was trying to not associate myself with Lyme as I was putting it in my past. So there weren't a lot of people that knew what I was going through, the few that did know were very supportive and would always call and make sure I was taking care of myself. The ones in my city are professionals at taking my mind off the bad and making me laugh about dumb stuff and it is a beautiful thing. Two of my best friends have Lyme so I am fortunate and grateful to have people close to me that understand the details of what goes on. The only thing that would be better is if we all lived in the same city! The people who don’t understand I try to avoid the topic with because it is tough for people who have never seen it to understand how a chronic illness can be so debilitating.
One piece of advice for others regarding Lyme and Covid?
Listen to your body. Healthy people should be taking extra care and anyone with Lyme should take extra care. Don’t push your body if it needs more time to heal, then take it! Our bodies and health are the number one focus, and as much as it sucks, they will always be the number one focus of anyone who wants to live a normal life with any chronic illness. It sucks, but so worth it to feel and experience normal life.
Remember, Lyme was in the rearview mirror before and will get there again.
Be easy on yourself.
*Opinions expressed by contributors are their own Jenifer Heloe participated in Global Lyme Alliance's COVID-19 and Lyme disease Series