LC 15 – The Trigger Event

Readers following the Long Covid (LC) series may note that I referenced a “trigger event” that increased my symptoms in 2023. Today I want to share about this, hoping it is of some use to other LC patients. The event was related to a covid vaccine. To be very clear, I am not anti-vax and am not advocating for people to reject vaccines. The choice to receive or reject any medical treatment is a personal decision to be made under guidance from medical professionals who are well informed about the treatment’s efficacy and the patient’s medical profile. If the trigger event had not happened, I would likely know nothing about LC and other chronic conditions that now affect millions. Given that mine is a life of service, this new dimension has provided a lot to be grateful for. Had the event not happened, I would not be writing the LC series that is both helpful for my own healing process and hopefully providing a service to others.

To begin, I had SARS CoV-2 in late 2019, prior to its pandemic status. In January of 2020, about a month after initial symptoms resolved, I had episodes of severe allergic reactions and anaphylaxis. I now know that these conditions are common in the LC community. My primary doctor prescribed an epi pen, but because of the 2020 lockdowns, it took almost a year to get in with an allergist. During that time, I had to be careful about certain foods, cats, and yellow jackets, but otherwise I was feeling well. When I did get to the allergy team, they were astounded by a blood test that revealed extreme sensitivity to 47 allergens. “I’ve never seen a report like this, Aleia” said the doctor in charge. They put me on sublingual immunotherapy drops in the fall of 2021.

I had been taking the drops for 14 months when I received my third covid vaccine, a Pfizer bivalent booster (December of 2022). The next day I developed a low-grade fever; spent a week in bed, feeling weak and lightheaded. I added apple cider vinegar (ACV) to my diet, thinking it could give my health a boost. A few weeks later a small hive appeared on my back. Then I caught a chill walking barefoot on the cold bathroom floor tile. My body temperature and blood pressure suddenly dropped to dangerous levels and I nearly fainted. The small hive turned into a big rash that spread rapidly up and down my back. I was nauseous, dizzy, and shaking uncontrollably. My heart rate was erratic and breath shallow. It was the middle of the night and snowing hard. Epi pen instruction is to call 911 immediately after use and get to a hospital for follow up. I recognized this as an anaphylactic event but was afraid to use epi because the hospital is half an hour away on clear roads; getting there could be impossible. Thankfully, my husband, Robert was there to support and help me to stabilize. I used rescue meds (Benadryl, Zyrtec, Tylenol), extra blankets and ginger tea.

Being afraid to fall asleep, I stayed awake all night listening to the storm outside and doing self-acupressure and Reiki. The next morning, I had a routine tele-med appointment with my allergy team. I reported the event to the physician’s assistant who recommended suspending both the ACV and the drops until I could meet with the doctor. She said the description of my experience was severe allergic reaction with borderline shock, and I should have used the epi pen. She said I was lucky and reiterated that if any of those symptoms returned, I must use the epi pen immediately and call 911. I was appropriately terrified. After our call I read about cold urticaria, shock, mast cell activation syndrome (MCAS), and anaphylaxis. I have since learned that MCAS can be triggered by all sorts of stimuli, so my event was likely the result of a perfect storm involving several factors.

At the time, I had no idea that I had Long Covid. Neither did I connect the event to the vaccine. I now know that for some LC patients, covid vaccines improve and/or eliminate LC symptoms. There are many success stories about this miracle in my LC Support Group. Conversely, for some LC patients, vaccines exacerbate LC symptoms, and can spark additional symptoms. There can be a lag time between the jab and onset of worse or new symptoms. I fall into the latter category, the lag time being about a month, which is like the lag time between my initial infection and the onset of LC symptoms.

Following the trigger event, my allergy symptoms worsened. Additionally, I was short of breath, lightheaded, dizzy, had headaches, post-orthostatic tachycardia (POTS) episodes, painful tingling in toes and fingers, chills, goosebumps, vertigo, pre-syncope, and was constantly fatigued. My digestion was off, I didn’t want to eat anything because I was afraid it would cause another event. I was fortunate that a friend recommended  Four Peaks Healthcare, where I connected with Dr. Natalie Metz. At our first appointment they asked when I had been sick with covid. I said, “Oh, I have not had covid”. They were not convinced, so we discussed the “cold” I had in late 2019, then proceeded to labs and many tests. Bottom line: I have residual damage from having had covid, and a vaccine made it worse.

I have now investigated covid and covid vaccines in depth, along with the scientific, medical, and governmental responses to covid vaccine injury. A recent New York Times article states that of 270 million Americans receiving (about 677 million) vaccines, 0.001% experienced serious side effects (i.e. neurological, autoimmune, cardiovascular). Over 13,000 covid vaccine injury claims have been filed and only 12 paid out as of April of this year. The response is horrific for those who are unable to work. It’s estimated that between 2 and 4 million people are out of work due to LC, and that is likely an undercount. The Vaccine Adverse Event Reporting System (VAERS) is the place to report a suspected injury. When I tried to report my event, the site timed out before I could finish. This happened twice, so I gave up trying. I learned in my support group that many patients are dismissed or gaslit when reporting a vaccine injury. In this excellent article, immunologist, Dr. S. Corbett-Helaire, recommends that reports of vaccine injury should be properly investigated and met with empathy. I heartily agree with all she says.

I’ve been reluctant to write about this aspect of my journey. Both covid and covid vaccines have been widely politicized and can lead into a distracting conspiracy theory rabbit hole that, to me, is not useful. Playing victim to the virus, the vaccine, medical science, the government, or really anything related to covid is the last thing I’m interested in doing. Has the virus wreaked havoc on my biology since 2020? Yes. Did it get worse after the booster? Yes. But I’m unwilling to let that be the only story. This whole experience has expanded what it means to me to be of service. I have learned so much along the way. To say that I feel grateful is an understatement. These experiences have unveiled a new level of trust that often surprises me, a peace that is humbling, and a community with similar lived experience that reciprocates care, kindness, and compassion. Just for today, that is enough.

Thank you for reading! Next time in the LC Series I’ll share a bit more about what lingers.  

Please Note:  The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions.

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