This spring marks the five-year anniversary of the Sars-CoV-2 (COVID) pandemic and my personal five-year anniversary of living with Long Covid (LC). Since December of 2019, I don’t get sick with colds and flu like many people do. I get sick in other ways that I’ve written about extensively in the LC Series blog posts. I still wear a mask in public places, don’t dine in restaurants or use public transportation (including no air travel). I live in a bubble, constantly vigilant about “catching a cold” that could be COVID or Respiratory Syncytial Virus (RSV) or now, measles. Anyone of those viral infections could result in triggering LC and Mast Cell Activation Syndrome (MCAS). There are times when I must be more vigilant, and this is one of those times.
I’m hearing reports of COVID cases nation-wide. Many are surprised because they had COVID during the holidays (or in deep winter), and didn’t think it could happen again so quickly. It can and does. Many don’t test anymore because tests are difficult to come by and expensive. This is unfortunate because one in ten people infected with any covid variant is at risk for LC. This excellent ten-minute video with Dr. Akiko Iwasaki brings us up to date on various aspects of LC research and treatment. She also reports on a small cohort study held to determine if vaccination improves LC symptoms. Of the 16 people in the trial, 10 showed improvement, 3 had no change, and 3 had worse outcomes. Dr. Iwasaki also discusses LC as an umbrella for several diagnoses that can result from a Sars-CoV-2 acute infection. While she doesn’t touch on it in this video, she and others studying LC have concluded that MCAS is often triggered for people with LC.
When I started this journey, I did not accept LC as a “life-long diagnosis because there are no cures.” I felt the same about MCAS and the other two diagnoses that top my health chart now. But here I am, five years in, and despite my disbelief (denial) and relentless search for a return to my old life, I still experience MCAS flares that can feel like the end-of-life is near. So, I accept this situation as “life-long, but manageable.” I keep an eye on the latest trending viral infections and with a measles outbreak on the rise, I exercise caution and calculate health risks. Because of covid’s (and now measles’) asymptomatic spread, I call it “rolling the dice” when I socialize with others indoors. It has been a major lifestyle adjustment. I now accept that I was born with a predisposition to MCAS, and it was brought to life with the Sars-CoV-2 virus in a whole new way.
Five years into this and given my biological reality, I feel I’m not living my Best Life Ever, but I am living my Best Life Possible, and I’m grateful for that grace. So why worry about measles if I live in a manageable bubble? Because it can be a fatal virus for some people; maybe even me. In the early 1900’s measles caused as many as 6,000 deaths per year. Vaccination against measles resulted in its eradication as of the year 2000. But today, the Center for Disease Control and Prevention (CDC) reports 1,088 confirmed measles cases nationally. For children that number is likely an undercount. Of the 1,088 confirmed cases, 12% have been hospitalized, 30% are under the age of 5, and 32% are over 20 years of age. The outbreak is happening in 33 states and in NYC. The CDC website offers links to each state that reports measles outbreaks. There was a case reported last week in my (Colorado) neighborhood.
In the nearby Lea County, NM an individual tested positive for measles after they were deceased. The official cause of death is under investigation, but the Lea County Health Department has advised caution and is offering a free vaccination clinic. The Texas Department of Health and Human Services has announced the second death of a child from health complications due to measles. They report that during an outbreak, one in five children will be sick enough to require hospitalization; one in twenty will develop pneumonia. In Texas there are detailed vaccine recommendations for infants, children, teens, and adults of various ages.
With measles, symptom onset can occur up to 21 days after exposure. The virus is transmitted by direct contact with infectious droplets or by airborne spread when an infected person breathes, coughs, or sneezes. Measles virus can remain infectious in the air for up to two hours after an infected person leaves an area. Early symptoms include high fever, cough, runny nose, and red, watery eyes (like allergies or a cold). A few days later, an itchy rash breaks out as flat, red spots on the face and can spread to the rest of the body. A person is contagious about four days before the rash appears to four days after. Symptoms can resolve within two to three weeks. Complications include pneumonia, ear infections, brain swelling and/or inflammation that can be fatal. What do measles have to do with MCAS, and why am I concerned about measles as a full-grown person who had both a measles vaccine and the measles as a child? That’s complicated but I will try to break it down here.
Dr. Lawrence Afrin’s excellent book “Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity” helped me to understand the role that mast cells play in the body’s complex systems and what happens during an MCAS flare. Some symptoms are shortness of breath, dizziness, presyncope, uncontrolled cough, allergic asthma, POTS, anaphylaxis, tachycardia, and dysregulated gut symptoms. Yes, I can experience all that and more. Things that trigger these symptoms for me are tomatoes, pine nuts, extreme hot or cold weather, chocolate, coffee, strong smells including perfume, aftershave, cleaning products, scented candles or plug-ins, laundry detergent, loud noises, barometric pressure changes, flashing lights, virtual or in person group activities (even if they are enjoyable and safe), over-stimulation of any kind (even from talking too fast or long), walking too fast or too far, and cats. There are more things on this list, but you get the picture. LC and MCAS have changed and weakened my immune system.
Last week, when I read the local county health alert that a confirmed measles patient was shopping at a nearby market on a specific date and during a specific hour, I took a deep breath. Was I there at the same time? I wore a mask to the market, but can measles transmit via touching the cart handle? Did I use enough hand sanitizer? I checked my calendar to see what I had done that day. Whew. I had not gone to the market on that day. But what about the next day? How long does the virus linger in the air? How many people have measles and don’t know yet? These were my initial thoughts.
My next thoughts were about MCAS and measles. As a child, I had measles, received a measles vaccine, and then got measles again (and was very ill with it). Do I have lifelong immunity from the infections or the vaccine? Are my measles titers abundant enough to protect me from contracting the measles again and/or from becoming seriously ill if I do? I’m not sure. There are lab tests for measles titers in my future. Another experience was in my early twenties. I received the swine flu vaccine and within days, contracted swine flu (which led to acute bronchitis, then strep throat). Reflecting on these events, got me wondering about vaccine efficacy for people with MCAS; people like me. Clearly in my case the vaccines did not convene a robust immunity to infection. To be clear, I am not an anti-vaccine advocate, but I do think more research is needed (perhaps genetically) about LC, MCAS and vaccines.
In closing, Long Covid and MCAS leave me with a vulnerable immune system that may not be robust enough to deal with measles (or another Sars-CoV-2 infection). I weave this word tapestry not just for myself, but for others in the LC community with concerns about these very same things. There is still no cure for LC. But there is a way to manage symptoms and have a Best Life Possible (BLP). Dr. Iwasaki recommends wearing a mask in public places, testing for COVID-19 if sick, and securing anti-virals (like Paxlovid) if the test is positive. Finding a physician versed in complex illnesses such as MCAS and LC is still difficult. The Long Covid Alliance offers a partial list of COVID-Competent Providers. My doctor, Harper Metz, at Four Peaks Health in Flagstaff, Arizona has helped me to find and maintain my BLP. Please feel free to contact me with comments or questions about these important health topics. Thank you for reading!
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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