COVID Vaccine Side Effects in People With Lyme Disease
Most participants reported common vaccine reactions
Overall symptom burden was not higher after vaccination
A small number reported severe symptoms lasting more than 72 hours
COVID vaccine side effects in people with Lyme disease were examined in a cross-sectional survey of 1,168 individuals with a history of Lyme disease. Among the participants, 616 had received a COVID-19 vaccine and 552 had not been vaccinated.
Overall symptom burden was not higher in vaccinated participants than in unvaccinated participants. The average GSQ-30 symptom score was slightly lower in the vaccinated group, although the difference was small and may not have been clinically meaningful. A small number of participants reported prolonged or severe reactions that warrant further study.
This article examines COVID-19 vaccination in individuals with a history of Lyme disease, including people with ongoing symptoms or post-treatment Lyme disease syndrome. It does not address vaccines developed specifically to prevent Lyme disease.
COVID-19 vaccine side effects in individuals with a history of Lyme disease
Highlights
Question: Some individuals with a history of Lyme disease have expressed concerns that their symptom burden would increase if they received a COVID-19 vaccine. What symptoms were reported by individuals with a history of Lyme disease who received a COVID-19 vaccine?
Findings: This cross-sectional study found a high symptom burden among 1,168 individuals with a history of Lyme disease. The GSQ-30 symptom burden score for the 616 vaccinated participants was significantly lower than the score for the 552 participants who were not vaccinated.
Meaning: Overall, COVID-19 vaccination was not associated with a higher symptom burden among individuals with a history of Lyme disease. However, a small number of participants reported prolonged or severe reactions following vaccination.
Background
Concerns have been raised that rare or serious outcomes associated with COVID-19 vaccines might not have been identified during Phase 3 clinical trials. An interim analysis of safety surveillance data from the Vaccine Safety Datalink raised questions about restrictive inclusion criteria, limited follow-up, and whether trial participants adequately reflected the general population that ultimately received the vaccines.2
Clinical trial exclusions that may have affected the results included recurrent severe infections, autoimmune conditions, serious psychiatric conditions, and “any other significant disease, disorder or finding” that could increase a volunteer’s risk, affect participation, or impair interpretation of the study data.3 Some individuals with a history of Lyme disease may have met one or more of these exclusion criteria.
Post-vaccination surveillance is important for identifying uncommon reactions, maintaining public trust, and informing vaccination policy. Some individuals with a history of Lyme disease have also expressed concern that vaccination might increase their Lyme disease symptom burden.
This cross-sectional survey compared the symptoms and overall symptom burden of 616 vaccinated and 552 unvaccinated individuals with a history of Lyme disease.
Methods
These findings summarize the results of a cross-sectional descriptive survey investigating symptom burden among individuals with a history of Lyme disease. Participants were recruited through a snowball sampling strategy using social media. The survey was conducted in accordance with the Declaration of Helsinki and was approved by the Western Institutional Review Board.
The General Symptom Questionnaire-30, or GSQ-30, is a self-report instrument designed to measure multisystem symptom burden in Lyme disease. Participants were asked how much they had been bothered by each of 30 symptoms.
Each symptom was rated on a five-point Likert scale. Responses included “not at all,” “a little bit,” “somewhat,” “quite a bit,” and “very much,” with scores ranging from 0 to 4. The maximum total score was 120.
The questionnaire evaluates four symptom domains relevant to Lyme disease: pain and fatigue, neuropsychiatric symptoms, neurologic symptoms, and viral-like symptoms.1
Results
Vaccination status
Of the 1,168 survey participants, 616 individuals, or 52.7%, had received a COVID-19 vaccine. Another 552 individuals, or 47.3%, had not been vaccinated. Among the unvaccinated participants, 17.9% reported that they were willing to receive a COVID-19 vaccine.
Among vaccinated participants, 55.5% received the Pfizer vaccine, 32.8% received the Moderna vaccine, 9.1% received the Johnson & Johnson vaccine, and 2.6% received another vaccine.
Overall Lyme disease symptom burden
The mean GSQ-30 symptom burden score for the 616 vaccinated individuals was significantly lower than the score for the 552 unvaccinated individuals: 43.5 compared with 46.6, respectively (p = 0.040).
Although statistically significant, the difference was small and may not have been clinically meaningful.
The average symptom burden among vaccinated individuals remained higher than scores reported for healthy controls, who had a mean score of 6, and individuals with an erythema migrans rash, who had a mean score of 24.15.
For comparison, the GSQ-30 validation study reported a mean score of 32.28 among individuals with traumatic brain injury, 42.28 among individuals with depression, and 42.38 among individuals with post-treatment Lyme disease syndrome.1
Common COVID vaccine side effects
Most vaccine recipients reported at least one minor side effect. Side effects were reported by 84.7% of Moderna recipients, 84.7% of Johnson & Johnson recipients, and 80.4% of Pfizer recipients.
The differences in overall side-effect rates among the vaccine groups were not statistically significant.
The most commonly reported reactions were pain at the injection site, reported by 88.92% of participants, and fatigue, reported by 72.97%.
Severe side effects were reported by 25.7% of Moderna recipients, 19.6% of Johnson & Johnson recipients, and 19.6% of Pfizer recipients.
Severe symptoms lasting more than 72 hours
Twenty-five of the 616 vaccinated participants, or approximately 4%, reported severe side effects lasting longer than 72 hours.
Among these 25 individuals, the most commonly reported symptoms were fatigue in 92%, fever in 66%, chills in 53%, body aches in 53%, headaches in 53%, vomiting in 26%, shortness of breath in 26%, dizziness in 20%, and heart palpitations in 13%.
Several participants provided detailed descriptions of their experiences following vaccination.
“`html
Participant Experiences
Several participants described their experiences after COVID-19 vaccination in greater detail. These reports illustrate the wide range of reactions observed in this survey but cannot establish whether vaccination caused the reported symptoms.
Cases 1 and 2: Participants who believed their tick-borne illness flared
Both participants believed their symptoms represented a flare of their underlying tick-borne illness. Because this was a cross-sectional survey, it cannot determine whether vaccination caused these symptom changes.
Cases 3–5: Severe symptoms reported after vaccination
These reports describe severe symptoms following vaccination but do not establish whether they were caused by the vaccine, underlying Lyme disease, other medical conditions, or multiple contributing factors.
Case 6: Improvement after vaccination
One participant reported substantial improvement following vaccination. The survey design cannot determine whether this improvement was related to vaccination or represented the natural variability of Lyme disease symptoms.
Discussion
Overall, COVID-19 vaccination was not associated with a higher symptom burden among individuals with a history of Lyme disease. Vaccinated participants had a slightly lower average GSQ-30 symptom score than unvaccinated participants, although the absolute difference was small and may not have been clinically meaningful.
Most vaccinated participants experienced only minor side effects, similar to those commonly reported in the general population. The most frequent reactions included pain at the injection site and fatigue.
The survey was designed to describe symptom burden rather than determine whether reported symptoms were directly caused by COVID-19 vaccination. Consequently, causal conclusions cannot be drawn from these findings.
Severe reactions were uncommon
Importantly, 25 of the 616 vaccinated participants (4%) reported severe symptoms lasting longer than 72 hours. None described the uncommon serious vaccine-related complications most frequently discussed in the medical literature, including thrombosis with thrombocytopenia syndrome (TTS), Guillain-Barré syndrome (GBS), or myocarditis.6-8
Instead, participants primarily described symptomatic presentations such as fatigue, fever, neurologic complaints, headaches, and worsening of existing symptoms. Three participants believed their symptoms represented a flare of their underlying Lyme disease. Although these reports were uncommon, they highlight areas deserving additional investigation.
One participant reported feeling substantially better following vaccination. Whether this improvement reflected vaccination, spontaneous improvement, or another factor cannot be determined. Similar variability has been reported in studies of individuals with long COVID, where some patients described symptom improvement after vaccination.9
Individuals with a history of Lyme disease should also consider the potential risks associated with COVID-19 infection itself, including increased symptom burden, hospitalization, and long COVID, when weighing decisions about vaccination. In this survey, prolonged severe reactions were uncommon, while the overall symptom burden was not higher in vaccinated participants.
Study Limitations
Several limitations should be considered when interpreting these findings.
First, this cross-sectional survey represents a single point in time and cannot establish cause and effect. Longitudinal studies are needed to determine whether vaccination changes symptom burden over time.
Second, participants were recruited through social media using a snowball sampling strategy. Individuals choosing to participate may differ from the broader population of people with a history of Lyme disease, introducing potential volunteer bias.
Third, the survey was not designed to determine whether persistent symptoms reflected ongoing tick-borne infection, post-treatment Lyme disease syndrome, coexisting medical conditions, or unrelated illnesses.
Author’s Conclusions
In this survey of 1,168 individuals with a history of Lyme disease, COVID-19 vaccination was not associated with a higher overall symptom burden. Most participants experienced side effects similar to those reported in the general population.
A small proportion of participants reported prolonged or severe symptoms after vaccination, while a small number described improvement. These differing experiences highlight the need for additional prospective research to better understand individual responses among people with a history of Lyme disease.
Call for Survey Participants
As of December 2021, 1,168 individuals had shared their experiences in this Lyme disease and COVID-19 survey. The survey remains open and is expected to provide additional insights into the effects of Lyme disease with or without COVID-19 infection or COVID-19 vaccination.
If you or someone you know would like to participate, please visit:
Click here to participate in the survey.
About the COVID Lyme Survey
This is one of the largest clinically based surveys of individuals with a history of Lyme disease who experienced COVID-19 infection, COVID-19 vaccination, or both.
“`html
Frequently Asked Questions
Does the COVID vaccine make Lyme disease worse?
In this survey, vaccinated participants did not report a higher overall symptom burden than unvaccinated participants. Although a small number reported prolonged or severe symptoms after vaccination, the study cannot determine whether the vaccine caused those symptoms.
Can the COVID vaccine trigger a Lyme disease flare?
Some participants believed their Lyme disease symptoms worsened after vaccination. However, because this was a cross-sectional survey, it cannot establish whether vaccination triggered a flare or whether symptoms reflected the natural variability of Lyme disease or other medical conditions.
What were the most common COVID vaccine side effects?
The most frequently reported side effects were pain at the injection site and fatigue. Fever, chills, body aches, headache, vomiting, dizziness, shortness of breath, and heart palpitations were reported less frequently, primarily among participants who experienced prolonged reactions.
Did Pfizer recipients report different side effects?
Injection-site pain and fatigue were the most commonly reported side effects across vaccine types. Although percentages varied somewhat among Pfizer, Moderna, and Johnson & Johnson recipients, overall side-effect rates were similar in this survey.
Should people with Lyme disease receive a COVID vaccine?
Vaccination decisions should be individualized after discussing the potential benefits and risks with a healthcare professional. In this survey, most vaccinated participants did not report a higher overall symptom burden than those who were unvaccinated.
Clinical Takeaway
This survey found that COVID-19 vaccination was not associated with a higher overall symptom burden among individuals with a history of Lyme disease. Most participants experienced side effects similar to those observed in the general population, while approximately 4% reported severe symptoms lasting longer than 72 hours. Because this was a cross-sectional survey, it cannot determine whether vaccination caused symptom changes in individual participants.
These findings support individualized discussions regarding COVID-19 vaccination while highlighting the need for prospective studies examining vaccine responses in people with a history of Lyme disease.
Related Articles
The experiences of individuals with a history of Lyme disease who contracted COVID-19
Persistent Lyme Disease: An Overview
Post-Treatment Lyme Disease Syndrome (PTLDS)
Case discussion: Side effects following COVID-19 vaccination
References
- Fallon BA, Zubcevik N, Bennett C, et al. The General Symptom Questionnaire-30 (GSQ-30): A Brief Measure of Multi-System Symptom Burden in Lyme Disease. Front Med (Lausanne). 2019;6:283.
- HKhubchandani J, Sharma S, Price JH, Wiblishauser MJ, Sharma M, Webb FJ. COVID-19 Vaccination Hesitancy in the United States: A Rapid National Assessment. J Community Health. 2021;46(2):270-277.
- Rane MS, Kochhar S, Poehlein E, et al. Determinants and trends of COVID-19 vaccine hesitancy and vaccine uptake in a national cohort of U.S. adults. Am J Epidemiol. 2022.
- Wagner AL, Porth JM, Wu Z, Boulton ML, Finlay JM, Kobayashi LC. Vaccine Hesitancy During the COVID-19 Pandemic. J Community Health. 2022.
- Troiano G, Nardi A. Vaccine hesitancy in the era of COVID-19. Public Health. 2021;194:245-251.
- Morales GI, Lee S, Bradford A, De Camp A, Tandoc EC Jr. Exploring vaccine hesitancy determinants during the COVID-19 pandemic. SSM Qual Res Health. 2022;2:100045.
- Khairat S, Zou B, Adler-Milstein J. Factors and Reasons Associated with Low COVID-19 Vaccine Uptake among Highly Hesitant Communities in the US. Am J Infect Control. 2022.
- Khalid MZ, Rogers S, Fatima A, Dawe M, Singh R. A Flare of Systemic Lupus Erythematosus Disease After COVID-19 Infection: A Case of Lupus Cerebritis. Cureus. 2021;13(7):e16104.
- Krajewski PK, Matusiak L, Szepietowski JC. Psoriasis flare-up associated with second dose of Pfizer-BioNTech BNT162b2 COVID-19 vaccine. J Eur Acad Dermatol Venereol. 2021;35(10):e632-e634.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
This is false information ! Tick borne infections cause hypercogulation the vaccine is known to cause blood clots . The Covid vaccine is known to cause immune deficiency & the cardiovascular system just like tick borne infections . Dr Cameron you should be ashamed of yourself circulating false dangerous information
Thank you for your comments. None of the survey participants reported hypercoagulation, immune deficiency or cardiovascular system issues. The Survey was not designed to determine whether these were conditions were present that the participant was not aware of.
Are you accepting insurance for clinical trials?
Hello. I am sorry to say we are not running a clinical trials.
I have had long hall Lyme for ten years. I was a bit unwell after my first two vaccines but since my booster on 05 January 2022 I have been extremely unwell with full blown Lyme symptoms again . Could not function. Only just coming out of it 2.5 months later.
You are not alone. There were others in the Survey who were ill for years with Lyme disease who had a severe flareup with the vaccine. There were others who have had a severe flareup after contracting COVID-19. In fact one in five Lyme disease patients reported suffering from long covid after contracting COVID-19.
I was bitten at 18 and diagnosed at 40. I spent 13 years on several antibiotics and now I’m only using herbals. I have severe shortness of breath and air hunger. I’m concerned about the worsening of these symptoms. After having taken two years off from working, I need to get back to work in healthcare. I feel slightly better about getting the vaccine, but I’m still scared of worsening SOB. It’s been so bad, I thought of going to ER as I feel like my breathing was shutting down. I also am taking a trip to Hawaii. I’m still on the fence about all of this. Thank you for sharing this valuable info!
Thank you for contributing to the body of knowlege we need to make sense of this 5000 piece puzzle. Anecdotally, I had no reaction to the vaccines. My lyme related discomforts are due to immaturaty: I’m an American goddammit, I can eat what I want! No. Can’t eat sugar. So, I’m glad vaccines are no longer dispensed on sugar cubes.
So it has been a few years, since I took the COVID VACCINES. I am now on my 3rd spring – 2022, 23, 24 – of coming down with Lyme. Not a FLARE. I have blood work proof showing I didn’t have it detectable, and then I did.. like 12 bands positive. I am wondering if the COVID VACCINE, somehow affected me.. I was Lyme free… for 2019, 20 and 21? Are we looking at long-range effects of the COVID VACCINE regarding Lyme patients?
I was looking at the role COVID-19 played on patients with a history of Lyme disease. Lyme disease patients with COVID or the COVID vaccine were not much different that Lyme disease patients who did not have COVID or the COVID vaccine. The take home Don’t get Lyme disease. The survey was not designed to address your question.