by Melissa Wright
Director of Patient Outreach for MyLymeData

About a third of Lyme patients participating in MyLymeData’s COVID-19 Vaccine Survey said they have been vaccinated.

Those who were vaccinated reported similar side effects as the general population.

In fact, MyLymeData participants reported slighter lower rates of side effects from the vaccine than those reported by the general population.

It is not clear whether these differences are meaningful, however.

(Click here for details of the general population numbers.)

In January, MyLymeData launched the COVID-19 Vaccine Survey. We asked Lyme patients whether they had gotten the vaccine and whether they had any side effects. We also asked whether those who had not gotten the vaccine intended to get it in the future.

The survey is ongoing, but we are sharing preliminary results from the first 1,200 who participated. We encourage people who have not taken the survey to do so now.

More than 32 million people in the US have been infected with the novel coronavirus, and more than 500,000 have died. Many others have become COVID long haulers, who survived their initial illness but continue to have persisting and sometimes debilitating symptoms.

Are Lyme patients at higher risk for COVID?

Many Lyme patients believe that they are in a high-risk category for a more severe disease (61%).  A majority of patients believe that their chronic Lyme disease places them in a high-risk category for severe disease (75%).

Approximately 13% of survey respondents have contracted COVID-19 and 14% say that a member of their household has contracted the illness.

To date, approximately 27% of the US population have been vaccinated since vaccine distribution began in mid-December 2020.

In our survey, 33% of Lyme patients report having been vaccinated. Of those, 53% received the Moderna vaccine, and 47% received Pfizer’s. Close to 59% had received one dose of vaccine, and 41% had received two doses.

These numbers are likely to increase over time as the vaccines become more readily available. (Note: When our survey was launched, there were only two vaccines available. We did include a category for “other.” So, those who have since received the Johnson and Johnson vaccine can use that. Preliminary responses reported here only include Moderna and Pfizer vaccines.)

Some vaccinated while actively on antibiotics

Sixteen percent of patients who report having been vaccinated were actively on antibiotic treatment for Lyme disease when they received their shots. Nearly 93% of those vaccinated recommend that their friends and family receive the vaccination when able.

Of those who have not been vaccinated, 35% intend to get the vaccine when it is available to them and 39% do not intend to receive the vaccine. The remainder are unsure. For patients who do not intend to get vaccinated, 49% cited safety concerns and worries about potential side effects.

A large majority of patients report that they take precautions to reduce their risk of exposure by wearing a mask in public (92%), washing their hands and/or using hand sanitizer often (91%), sheltering in place (69%), or limiting contact to a small group of people with low risk (71%).

If you have not yet taken this survey, we hope you will do so. If you are already enrolled in MyLymeData,  just log in and click on the survey COVID-19 Vaccine Survey for Lyme Patients from your participant dashboard.

This survey is different from the COVID-19 Impact survey we launched last year, so please make sure to take it. If you have not yet joined MyLymeData, now is the perfect time to sign up.

More than 14,000 people have enrolled in MyLymeData since LymeDisease.org launched it over five years ago. It allows patients to privately pool information about their Lyme disease experiences—and is now the largest observational study of Lyme patients ever conducted.

Visit www.mylymedata.org to register and complete the entry survey(s).  If you have questions or experience trouble, please email us at mylymedata@lymefaces.com

Melissa Wright is LymeDisease.org’s Director of Patient Engagement & Outreach, and a member of the MyLymeData team.