Article written by Casey Tutalo
How long have you had Lyme disease? What were/are your symptoms?
I have struggled with Lyme Disease and a co-infection of Bartonella since I was five years old. When I was sixteen years old, I was re-infected causing extreme and debilitating symptoms. My neurological system was deeply impaired and I was having burning sensations in my neck radiating into my head. I was unable to speak full sentences, experiencing facial paralysis, brain fog, intense migraines, trouble swallowing, seizure like activity, allergic reactions, deep muscle pain, hyperreflexia, night sweats, respiratory attacks (gasping for air), exhaustion followed by insomnia, night terrors, emotional outbursts, heart palpitations, neuropathy, candida overgrowth, and gastro intestinal symptoms. I treated for five years before I reached a point where I was considered to be in remission. Lyme disease made me more susceptible to bacterial and viral infections due to my impaired immune system. I had a tonsillectomy due to recurrent bacterial infections that would lead to septic episodes and I had to have an emergency lithotripsy (kidney stone removal) due to temporary impaired kidney function related to long term antibiotic use. I am now 28 years old and I experience flare ups that I have learned how to manage due to my medical knowledge obtained in nurse practitioner school and through the progressive knowledge provided by the Lyme community, that I have followed on social media over the years.
How did Covid affect your Lyme disease?
When I was sick with Covid it presented in a way where I knew prior to testing positive, that it was in fact the virus. The first symptom I had was a swollen parotid gland (these glands are located in front and beneath the ear). Due to my underlying Lyme Disease this is a red flag when lymph nodes become swollen, because this indicates my immune system is struggling. It was during this time that I developed a rash all over my body that appeared to look similar to a heat rash. Within 24 hours, my chest felt as if there were weights sitting on it and a tightness occurred leading me to go get tested again. My throat was aching and it was further verification that I was sick. My PCR test came back positive this time and it was during that day where the extreme joint pain started to radiate from my upper thighs down to my toes. This is a classic and residual Lyme symptom for me, that occurs even when I get a sinus infection or a cold. I developed a dry cough, high fever (103.0), extreme exhaustion, and irritability. When I become overly emotional this is an indication that my Lyme is flaring. Emotional coping becomes difficult for me during a flare up and I will feel the need to cry and become more susceptible to increased anxiety or panic attacks. Over the next three days congestion developed and migraines started to occur. I have not had a migraine of this severity since I went into remission years ago. My sense of taste and smell vanished and my fever did not break during these days. My joint pain lingered, my Lyme induced brain fog returned, and I lost my center of gravity causing me to trip and fall over. Becoming imbalanced while walking was one of the indicators that I was suffering from Lyme disease in my neurological system when I was first diagnosed, and I was sad to see it return during Covid. My fever broke in the middle of the night on the fourth day and did not return for the remainder of the healing process. Day five through eight, I noticed an increase in my energy levels but my chest was still tight and sputum production was moderate to heavy. The leg aches were still very intense and I would have periods of confusion and increased brain fog. There was one day where I experienced shortness of breath but it resolved the following day. Day ten through twelve I experienced diarrhea, nausea, and reoccurring sore throat. The congestion returned and I felt extreme pain and burning in my sinus cavities. By day fourteen all of the symptoms resolved besides brain fog and fatigue. The following week I was without symptoms but I was feeling depressed and irritable without much to trigger these feelings. It has been a month since I have recovered from Covid. The depression and emotional outbursts have subsided and I feel very happy and grounded again. I notice there are days where my brain fog continues and I am feeling an increased in fatigue by the end of the day which has promoted an earlier bed time.
What has this time been like for you living through a pandemic with Lyme?
Living through this pandemic has been challenging for me. It caused a lot of anxiety, sadness, confusion, and stress as I was in my last year of nurse practitioner school while trying to navigate this situation. I was scared for my family, friends, the nation, and myself. I knew that I had a duty to fulfill and I stayed committed to finishing school, my clinical rotations, and serving my community during this time despite the risk to my health. It was challenging hearing others talk about how they weren’t fearful about contracting the virus due to having good immune systems. Knowing that I was on the front lines of this pandemic and having an immune system affected by Lyme, increased my awareness and I followed strict PPE measures to protect myself and those that I love. I isolated away from my friends and family that entire year for their protection (my parents also struggle with chronic Lyme disease). I felt lonely during this period of time (as did the nation), but it led me to graduating and accomplishing the goals I intended to achieve while protecting myself and the ones I love. It is ironic that I actually contacted the virus a year later, not in the clinical setting.
Have your friends/family been understanding and supportive of your health concerns during this time?
My friends and family have been supportive of my decisions to isolate and to remain cautious during this time. As a whole we all have different opinions and feelings towards the pandemic but they do not interfere with the lifestyle changes I have made in order to feel comfortable. For instance, to this day I limit who I see and the duration of time I see them for. I always wear a mask and distance when around my parents and those with compromised immune systems, because I empathize for those in a similar situation to mine. It is tough because most of the general population doesn’t recognize the Lyme population as immunocompromised and again, this population is being underserved during this is pandemic.
"Others may not understand what it takes for you to stay healthy because their level of health is different than yours. Do not let opinions of others steer you into making choices that you feel uncomfortable with. If your safe zone is in your house getting groceries delivered to you, do exactly that."
One piece of advice for others regarding Lyme and COVID-19?
My piece of advice to the Lyme population during Covid is that despite how others may perceive the choices you are making in order to maintain your own health, just remember it is not their choice to make. Own your health, own your choices, and do not let anyone make you feel inferior for advocating for yourself and your health needs. Others may not understand what it takes for you to stay healthy because their level of health is different than yours. Do not let opinions of others steer you into making choices that you feel uncomfortable with. If your safe zone is in your house getting groceries delivered to you, do exactly that. If your safe zone looks different than that example, again do exactly that. Just have a game plan ready for if the day comes that you become sick with Covid. Have a covid kit at home prepared with the essentials needed and a support system of friends and family that you can rely on to check in on you or to assist if needed.
Opinions expressed by contributors are their own.
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