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:
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.
Methods
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.
Discussion
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.
Study limitations
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.
Conclusions
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.
References:
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
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.
Comments
4 responses to “Severity of Lyme disease even without contracting COVID-19 or being vaccinated against COVID-19 findings”
Kathy
I have a grown son, who, because of an extreme environmental exposure to mold and an attempt to take his life, came to live with me. I had been I’ll with a toxin overload of mold and breast implants for over 15 years, and am retired. I realized his symptoms were the same as my mold related symptoms, so I took him to an MD near here, who is also a functional medicine practitioner, and studied mold and stealth infections for many years. She ran a lot of tests and blood work, and he tested positive for mold toxicity, and, to my surprise, he had manifested two types of Bartonella and Babesia. Before he could get any more ill, after Christmas, he got a bad case of Covid, despite having the vaccine. His symptoms skyrocketed in all directions,and he’s scared, I’m scared, and his father is scared, but we are at a loss.
He’s been on Ivermectin every other day, a multi-vitamin every other day, Nystatin, Biactin, and a prescription antihistamine. He’s also been prescribed some things from his psychiatrist, like 3 mg clonopin per day, gabapentin 3 x per day, and Mirtazapine. I may be missing something.
Despite these antibiotics and other drugs, he’s been SO sick since January, and it’s now May 2, that I dread every day of my life (which has been limited to taking care of him every day and not seeing anyone.), because my heart is breaking. He’s at his wit’s end and has wanted to be put in an inpatient hospital. I’ve been looking for one, but he has Medicaid, although I’d sell my house if I have to! I haven’t been able to find one who deals with this, or I’d take him there immediately. I did take him to two hospital emergency rooms, and they did a CAT scan, a urine lab, and blood work. As you can imagine, all were within “normal limits”, and his own family doctor told him this was all his anxiety. I told him I’d had mold toxicity, and it affects people both psychologically and neurologically, but he basically shook his head and walked out of the room.
This young man has gone through absolute hell since age 7, when he had meningoencephalitis. I knew something had changed in his brain after his meningitis, even though he was extremely smart, so he kept up with his regular grades. He then had several severe TBIs from sports and a severe fall. He now has a forward head posture, a history of impulsive behavior, severe anxiety, has been diagnosed as being bipolar, with other disorders .
He’s now 36 and just received disability, because he is so ADD, impulsive, forgetful, and has other issues like severe head pain if he eats corn.
However, since January, he now complains of neck pain, limb pain, organ pain, etc., but the worst is the absolutely unrelenting head pressure and ear popping . All the other symptoms of the mold and Lyme, worsened, like psychological and neurological disorders, the SEVERE anxiety and depression, the cognitive decline, forgetfulness, self-berating character assassinations, along with having had psychosis, severe paranoia, delusions, nightmares, hallucinations, which just started, significant pain all over, sweats, OCD, erratic fevers, pins and needle sensations, burning skin, dysregulation of body temperature, eye irritation, picking at his skin, nervousness, hair loss, reluctance to leave the house, mood swings, rage at times, being very disorganized, and the list is endless. I believe he has autoimmune encephalitis at this point and his symptoms are severe. We desperately need guidance.
My name is Shanna and I’m 45 years old. I’ve been sick for years and was blaming all my symptoms from a serious back injury in December of 2001. This is where my roller coaster ride begins. I was given every pain medicine under the sun over a 10year period. I was given injections, had a discography and had electro thermal disc decompression done at three levels of my lumbar spine. I was addicted to the pain meds but I was 80lbs and couldn’t keep food down. I was diagnosed with CRPS (Complex Regional Pain Syndrome). I sought out a specialist in that field and found Dr Timothy Lubenow number 2 in the US for treating CRPS. He wanted to place an epidural and do a ten day in hospital detox. I was so sick, walking death. I found out I didn’t have CRPS I had neuropathic pain. Dr Lubenow saved my life. My pain was still bad but not nearly as bad after I got off ALL the meds. I was a vet tech for year’s and was exposed to ticks all the time. I found a fully engorged deer tick on the back of my scalp. I did a 14 days of doxycycline and thought nothing of it (2013). I moved from northern Illinois to middle Tennessee in November 2017. I’ve removed several from me due to clearing land. None that I thought had been there for 36 hours. I became very ill on December 17th. My NP had some blood taken but didn’t tell me what she was testing for. On December 23rd I tested positive for Mononucleosis EBV/CMV induced. Then after Christmas I found out I tested positive for lymes. I had questions and they ran a few more tests. I had high inflammation level’s, two numbers off from having RA and my ANA panel was positive for RNP antibodies MCTD. In February I had a bunch more blood work done and a few more tests added but with a different lab. I tested positive for a past and present bite of lymes and tested positive for a past bite of Rockey Mountain Spotted Fever. I’ve not had Covid and have not had any shots my immune system is definitely compromised. I’m tired of just existing, I want to live again. The symptoms are awful and debilitating on bad days. I’ve had two chiropractor’s tell me I have fibromyalgia. (My grandmother had fibromyalgia and really bad RA). I’ve got an appointment with an unconventional Dr here in TN. We’ll see how it goes.
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