Note: This is NOT a place to debate anti-vax arguments, vaccines and autism, etc… This is a place for me to share my experience with personal and family history with allergic reactions to vaccines.
Having rare allergies can be very isolating, and my hope is that sharing my experience will offer some help or encouragement others who might be dealing with similar situations.
Anti-vax or COVID misinformation or commentary will be deleted.
Disclaimer: I am not a medical professional and nothing in this post is meant, or should be interpreted, as medical advice. If you have questions about your health or vaccinations, speak to a medical professional who is familiar with your health situation and medical history.
The last 15 years or so has been rough on anyone who isn’t vaccinated. Contrary to what you might read on the interwebs or hear on daytime talk shows, there are people who can’t be vaccinated safely. It has nothing to do with what someone wrote on a crunchy parenting blog or what a celebrity says in their interviews or their book. There have always been a very small percentage people who have personal or family history that indicates that the risks of vaccinations outweigh potential benefits. I’m one of those people. I haven’t been vaccinated against a communicable disease for over 30 years, because my risk of serious allergic reaction (including anaphylaxis) is too high.
For the better part of my life, I have been protected by herd immunity – a term that has been thrown about a lot in the last year. According to the Association for Professionals in Infection Control and Epidemiology, “herd immunity (or community immunity) occurs when a high percentage of the community is immune to a disease (through vaccination and/or prior illness), making the spread of this disease from person to person unlikely. Even individuals not vaccinated (such as newborns and the immunocompromised) are offered some protection because the disease has little opportunity to spread within the community.” The majority of my peers being vaccinated prevented the spread of diseases, making me less likely to come in contact with an infected person and becoming infected myself. I’ve been lucky to have never had measles, or mumps, or most of the other childhood illnesses we vaccinate against.
In a sentiment that is already cliché because it is so often true, COVID changed all that.
The rapid spread of COVID and the amazing response by the scientific communities who created very safe vaccines to combat this illness forced me to once again weigh the question: to vaccinate myself or not vaccinate myself? Unlike the decision to remain unvaccinated for other communicable diseases that I’ve never had, this was a very different scenario: I’ve had COVID. TWICE.
The first time was February 2020, before we were even aware the virus was in my state. It was the worst illness I’ve experienced and I truly thought I wouldn’t survive. As more information about SARS-CoV-2 emerged, it became clear to my doctor and myself that what I had survived was COVID-19 (without the benefit of testing, treatment or best practices like avoiding laying on your back or staying away from ibuprofen). The second time was late January 2021 and thankfully, this round with ‘rona was much milder. I didn’t know I was sicker than a sinus infection or fibro flare until my husband got flagged as positive in the asymptomatic testing conducted weekly by his employer. I tested positive as well, but didn’t require more than rest and hydration for the next 14 days as I waited out our quarantine.
The biggest lingering symptom from the second round of COVID for me was dread. Dread that I was going to get this illness repeatedly until I died from it. There were talks of vaccination efforts coming to the general population, but was that an option for me?
The decision to vaccinate or not to vaccinate for various illnesses had come up a handful of times with my husband’s family in our decade+ relationship, both in casual conversation (since vaccines have been such a cultural topic in the past 15 years) and from a medical standpoint, as I have several family-in-law members who work in healthcare. My personal and family reaction history is quite interesting if you like to problem solve, and Dr. MIL certainly does.
During a conversation about COVID vaccination, and treatment during our second bout of coronavirus, Dr. MIL and I talked about the risks to the COVID vaccine and, for the first time in my adult life, I was keen to be vaccinated. Or at least try. The CDC had a warning out for those who had previous allergic reactions to any vaccines already in place, which gave me pause. (Spoiler alert: It has since been updated to include PEG.)
Enter the news reports about anaphylactic reactions to the COVID vaccines from the UK and US, like this one and this one.
Being licensed to treat patients in our state, Dr. MIL has been kept in the loop for all things COVID for the last year (a step by her medical system to ensure all licensed medical professionals are up-to-speed if hospitals become inundated with patients and they need more providers during a surge). When the reports of severe allergic reactions hit the news, Dr. MIL saw scientific communities’ informed responses to the potential allergen. Her diagnostician brain kicked into gear when the first potential allergen was hypothesized as polyethylene glycol, abbreviated as PEG.
In late January, I got a message from her, asking for a list of things I had had reactions to and what medications I’ve had problems with in the past, including what symptoms I experienced. The CDC had just released a warning about individuals with PEG reactions should not be vaccinated with the mRNA COVID vaccines. After a few ingredient searches, looking for ALL ingredients – not just active ingredients, we found that my 3 anaphylactic-type reactions were all to products that contained PEG.
PEG is a widely used petrochemical for all kinds of purposes in all kinds of products. If you’ve had a colonoscopy, you’re probably familiar with MiraLax or GoLytely? PEG. It’s a very potent laxative. It can also act as an emollient (to soften and lubricate the skin), a humectant (which brings moisture to skin), a surfactant, an emulsifier (keeping ingredients evenly mixed – think any no-shake version of a mixture that contains both oil and water, i.e. make-up remover), a thickener, an excipient in medicines and a penetration enhancer for topical products like cosmetics (getting the active ingredients further into your body/skin/cells/etc.), a lubricant (both mechanical and, ehm, personal), a stabilizer, a propellant (yes, like jet fuel), a dispersant in sprays, an anti-foaming agent in food and drinks, and the main ingredient in paint ball filler.
Dr. MIL immediately recommended a visit to my primary care physician to look into this further. This article encapsulated why this needed to be sooner rather than later: “A low awareness of the allergenic potential of PEG among consumers, manufacturers and doctors leads to under-diagnosis and under-reporting of allergy to PEGs, putting patients at risk of repeated severe reactions.”
I’ve already had 3 events in the last 8 years. Living day to day not knowing if the next thing you breathe in or ingest could potentially kill you and you’re powerless to prevent it takes a real toll. Once you have a reaction like that, your chances of repeated episodes go up, and the intensity can increase as well. Even scarier, some preparations of epinephrine (which can counteract anaphylaxis) contain PEG. I’m trying not to get taken out, y’all.
After I made a preliminary list of my reactions and symptoms, I had enough evidence to justify doing a trial elimination of PEG to see what, if anything, happened when I did so. That was a whole damn process.
Moderna & Pfizer’s mRNA vaccines for COVID both contain PEG; Johnson & Johnson’s viral vector vaccine contain polysorbate-80 (a chemical created using PEG, that has documented cross-reactivity to PEG, but more on that later…).
To vaccinate or not to vaccinate? For now, there won’t be any COVID vaccination for me.
Donita Westman 