Severity of Lyme disease even without contracting COVID-19 or being vaccinated against COVID-19 findings
Dr. Cameron highlights the burden of symptoms for individuals with a history of Lyme disease even without contracting COVID-19 or without a COVID-19 vaccine.
Question: What is the clinical presentation of someone with a history of Lyme disease who has not contracted COVID-19 or taken the COVID-19 vaccine?
Findings: This cross-sectional Survey reveals a high symptom burden in 289 individuals with a history of Lyme Disease who had not contracted COVID-19 or taken the COVID-19 vaccine. They had been ill for an average of 8.1 years. Of those who were treated with antibiotics, approximately three in five were treated for at least a year. Almost four in five (78%) were chronically ill at the time of the Survey. Their average burden of illness was high, with a GSQ score of 52 out of 120, which was higher than individuals with a history of depression, Traumatic Brain Injury (TBI), and Post Treatment Lyme Disease Syndrome (PTLDS).
Meaning: Individuals with a history of Lyme disease can report a high burden of symptoms for years despite antibiotic treatment, even without contracting COVID-19 or taking the COVID-19 vaccine.
Background, method, results, and conclusion
The symptoms of Lyme disease enrolling in three National Institutes of Health (NIH) trials symptoms have included extreme fatigue, sleep disturbances, mood disturbances, poor memory and concentration, headaches, dizziness, neck pain, tingling in hands and feet, and joint pain1-3 who fulfilled Centers for Disease Control and Prevention (CDC) case definition for Lyme disease. Moreover, a growing number of chronic and debilitating manifestations have been described, including:
- Lyme encephalopathy1,2
- Lyme neuropathy4
- Neuropsychiatric Lyme disease5
- Pediatric acute-onset neuropsychiatric syndrome – PANS6
- Lyme carditis7
- Autonomic dysfunction – POTS8
- Post-treatment Lyme fatigue – Post-Lyme disease3
- Neuropathic pain9
- Persistent symptoms after Lyme disease10
- Lyme disease with co-infection (e.g. Babesia)11
But what are the symptoms and their burden for individuals with a history of Lyme disease who have not contracted COVID-19 or taken the COVID-19 vaccine? In this cross-sectional Survey, 289 individuals fitting this description shared their experiences.
These findings summarize the results of a cross-sectional descriptive survey investigating the burden of Lyme disease (BOLD). While the 1,168 respondents may have contracted COVID-19, and may have taken the COVID-19 vaccine, these findings pertain only to those 288 individuals with a history of Lyme disease and a COVID-19 infection. Participants were recruited through a snowball sampling strategy via social media. This Survey was conducted in accordance with the Declaration of Helsinki and approved by the Western Institutional Review Board.
The GSQ-30 measure of symptom burden for 288 individuals with a history of Lyme disease and COVID-19 was significantly higher than the symptom burden of burden for 715 individuals with a history of Lyme disease who have not had COVID-19 (48.2 vs. 43.1, p = 0.008). Moreover, the GSQ-30 measure of symptom burden for 288 individuals with a history of Lyme disease and COVID-19 was greater than the GSQ-30 measure of symptoms for healthy controls (mean=6.00) and patients with an erythema migrans (EM) rash (mean=24.15), traumatic brain injury (TBI) (mean 32.28), depression (mean 42.28), and PTLDS, (mean 42.38) described in a validation paper.1
In this cross-sectional Survey of 1,168 individuals with a history of Lyme disease, 289 individuals had not contracted COVID-19 or taken the COVID-19 vaccine at the time of the Survey. They had been ill for an average of 8.1 years (SD=10.9).
Of these 289 individuals, 252 had taken antibiotics (87.2%), and 37 had not (12.8%). Of the 252 who had taken antibiotics, 109 (43.3%) had taken antibiotics for at least 3 years, and 47 (18.7%) had taken antibiotics for at least 1 year but no more than 3 years. Of those treated with antibiotics, approximately three in five (61.9%) were treated for at least a year. Of the remaining respondents, 33 (13.1%) were treated at least 6 months up to one year, 40 (15.9%) were treated for at least one month but less than six months, and 23 (9.1%) were treated less than a month.
In addition, 226 (78.2%) were chronically ill at the time of the Survey. Another 54 (18.7%) had been chronically ill but not at the time of the Survey. Only 9 (3.1%) had never been chronically ill. Finally, 66 (26.2%) were being treated with antibiotics for their tick-borne illness at the time they completed the Survey. The remaining 186 (73.8%) were not being treated with antibiotics.
The GSQ-30 measure of symptom burden for these 289 individuals of 46.3 was greater than the GSQ-30 measure of symptoms for healthy controls (6.0) and patients with an erythema migrans rash (24.2), TBI (32.3), depression (42.3), and PTLDS, (42.4) described in a previous report.¹ For those 37 respondents who had never been treated with antibiotics, the mean GSQ was 47.4 (SD=25.6), which was not significantly different from those 252 who had been treated with antibiotics (46.2, SD=27.9; t(287)=0.26, p=0.796).
The most common symptom cluster in individuals with a history of Lyme disease who had not contracted COVID-19 or taken the COVID-19 vaccine was pain/fatigue, followed in rank order by neuropsychiatric symptoms, neurologic symptoms, and flu-like symptoms. The scores for the symptoms in each domain are listed in Table 1.
Nearly four out of five respondents who had not contracted COVID-19 or taken the COVID-19 vaccine reported being chronically ill at the time of this survey. While some medical professionals have questioned the existence of chronic manifestations of Lyme disease,13,14 two NIH-sponsored Lyme disease trials suggested their existence.2,10 The present findings further support the existence of these chronic manifestations, and detail them in the absence of COVID-19 and its vaccination.
The symptom burden in these individuals was severe. Some have questioned the existence of chronic manifestations of Lyme disease, likening the symptoms to nothing more than the aches and pains of daily living.13,14 However, the symptom burden of individuals with Lyme disease was significantly higher than for healthy controls in two separate trials.2,10 The severity of their symptoms was confirmed using the validated GSQ-30 measure of the burden of symptoms in individuals with PTLDS.12
These symptoms can be long-lasting. In our sample, individuals had been ill for an average of 8.1 years. In a retrospective evaluation of 214 patients from Westchester County, New York, who fulfilled the Centers for Disease Control and Prevention (CDC) case definition for Lyme disease, six out of ten (62%) patients remained symptomatic at a mean of 3.2 years after initial treatment.15 In a population-based, retrospective cohort study, 38 Lyme disease patients were significantly sicker than controls at an average of 6.2 years after antibiotic treatment.16 The average duration of illness was 4.7 years and nine years in the Klempner and Fallon NIH-sponsored trials, respectively.2,10 These studies all suggest long-lasting manifestations of Lyme disease.
Moreover, many individuals can remain chronically ill despite treatment. Nearly all of the respondents in this survey with a history of Lyme disease (96.7%) described being chronically ill, either at the time of the study, or in the past. Moreover, almost four in five respondents (78.2%) reported being chronically ill at the time of the Survey.
Another study indicated that more than a third of individuals with neurologic Lyme disease who were treated with two weeks of intravenous ceftriaxone had relapsed or were not better six months after treatment.1 The authors noted that even though half of participants reported receiving antibiotics appropriate for their stage of the disease, there was still progression of the illness. This was theorized to result from failure to eradicate the spirochete completely with a two-week course of intravenous ceftriaxone. The authors also suggest that patients whose condition did not improve may have had irreversible damage to the nervous system, particularly since the response to therapy tended to be worse in patients with longer duration of illness.
The present survey revealed wide variability in the duration of treatment. The form of treatment was also highly variable among physicians in a retrospective analysis of claims to a nationwide health insurance company.17 From 2020 to 2012, the mean duration of treatment was 85.7 days ranging from 35 to 404 days. The most common antibiotics were doxycycline, amoxicillin, cefuroxime, and azithromycin. Two in five patients (43%) were switched from one antibiotic to another, while one in five (18%) were prescribed a combination of treatments. The average treatment duration and use of multiple antibiotics did not differ based on whether treatment providers were experts in Lyme disease, suggesting that variability in treatments likely stemmed from other factors such as patient symptom differences or practitioner preferences.17
The present findings show that the chronic symptoms of Lyme disease have not changed substantially since the 1990 description of neurologic Lyme disease. At that time, the most common symptoms described were memory loss (81%), fatigue (74%), headache (48%), sensory loss (44%), spinal or radicular pain (41%), depression (37%), sleep disturbance (30%), irritability (26%), paresthesias (26%), difficulty finding words (19%), distal hearing loss (15%), and fibromyalgia (15%).1 Notably, memory loss, fatigue, sensory loss (numbness) and headache were among the highest-ranked symptoms in their respective domains in the present sample.
Finally, it is not clear why over one in ten from our sample (12.8%) had never been treated with antibiotics for Lyme disease. However, the burden of symptoms was not significantly different in these individuals relative to those who had been treated with antibiotics. While this might suggest that antibiotic treatment does not affect chronic manifestations and long-term symptom load, these findings would need to be validated on a larger scale.
There are several limitations to this survey. First, a cross-sectional approach does not provide evidence for causality as the data represent a snapshot of time. A longitudinal design will be needed to address changes over time and causality. Second, the Survey may be subject to volunteer bias, where participants who actively decide to participate in the research may differ from the general population of individuals with a history of Lyme disease. Third, the Survey was not designed to determine if the ongoing symptoms were related to a persistent tick-borne infection and may be related to co-morbid conditions. Fourth, the Survey was not designed to determine whether the lack of treatment was the responsibility of the patient or their doctor.
Individuals with a history of Lyme disease can report a high burden of illness for many years despite antibiotic treatment, even without contracting COVID-19 or taking the COVID-19 vaccine.
Call for Survey participants to share their experience
As of December 2021, 1,168 individuals had shared their experience in this COVID-19 and Lyme disease Survey. The Survey is still open and expected to offer more insights into the effects of Lyme disease with or without a COVID-19 infection or COVID-19 vaccine. If you or someone you know are able to share your experiences, please click here to participate in the survey. Click here to participate in the Survey.
About the COVID Lyme Survey:
This is the largest clinically-based survey of individuals with a history of Lyme disease with or without a COVID-19 infection or COVID-19 vaccination.
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. Front Med (Lausanne) Nov 22 1990;323(21):1438-44. doi:10.1056/NEJM199011223232102
- Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. Mar 25 2008;70(13):992-1003. doi:10.1212/01.WNL.0000284604.61160.2d
- Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. Jun 24 2003;60(12):1923-30. doi:10.1212/01.wnl.0000071227.23769.9e
- Halperin JJ, Little BW, Coyle PK, Dattwyler RJ. Lyme disease: cause of a treatable peripheral neuropathy. Neurology. Nov 1987;37(11):1700-6. doi:10.1212/wnl.37.11.1700
- Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. Nov 1994;151(11):1571-83. doi:10.1176/ajp.151.11.1571
- Sigra S, Hesselmark E, Bejerot S. Treatment of PANDAS and PANS: a systematic review. Neurosci Biobehav Rev. Mar 2018;86:51-65. doi:10.1016/j.neubiorev.2018.01.001
- Muehlenbachs A, Bollweg BC, Schulz TJ, et al. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. Am J Pathol. May 2016;186(5):1195-205. doi:10.1016/j.ajpath.2015.12.027
- Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiol J. 2011;18(1):63-6.
- Simons LE. Fear of pain in children and adolescents with neuropathic pain and complex regional pain syndrome. Pain. Feb 2016;157 Suppl 1:S90-7. doi:10.1097/j.pain.0000000000000377
- Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. Jul 12 2001;345(2):85-92. doi:10.1056/NEJM200107123450202
- Krause PJ, Telford SR, 3rd, Spielman A, et al. Concurrent Lyme disease and babesiosis. Evidence for increased severity and duration of illness. JAMA. Jun 5 1996;275(21):1657-60.
- Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224. doi:10.3389/fmed.2017.00224
- Wormser GP, Nadelman RB, Dattwyler RJ, et al. Practice guidelines for the treatment of Lyme disease. The Infectious Diseases Society of America. Clin Infect Dis. Jul 2000;31 Suppl 1:1-14. doi:10.1086/314053
- Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. Nov 1 2006;43(9):1089-134. doi:10.1086/508667
- Asch ES, Bujak DI, Weiss M, Peterson MG, Weinstein A. Lyme disease: an infectious and postinfectious syndrome. J Rheumatol. Mar 1994;21(3):454-61.
- Shadick NA, Phillips CB, Logigian EL, et al. The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study. Ann Intern Med. Oct 15 1994;121(8):560-7. doi:10.7326/0003-4819-121-8-199410150-00002
- Tseng YJ, Cami A, Goldmann DA, DeMaria A, Jr., Mandl KD. Incidence and Patterns of Extended-Course Antibiotic Therapy in Patients Evaluated for Lyme Disease. Clin Infect Dis. Nov 15 2015;61(10):1536-42. doi:10.1093/cid/civ636
Links to Lyme and COVID-19 series
- Severity of Lyme disease in a COVID-19 pandemic
- A 16-year-old girl and a 28-year-old woman with a history of Lyme disease shared their experiences after contracting COVID-19 – case discussion
- The experiences of individuals with a history of Lyme disease who contracted COVID-19
- 28-year-old woman with a history of Lyme disease describes side effects following her COVID-19 vaccine – a case discussion
- Side effects of COVID-19 vaccines in individuals with Lyme disease
- A 45-year-old woman who has been hesitant to take the COVID-19 vaccine. Next Lyme science blog
- Concerns of individuals with a history of Lyme disease who have been hesitant or have refused to take the vaccine. next Lyme science blog
duals with a history of Lyme disease who have been hesitant or have refused to take the vaccine. Next Lyme science blog.