Lyme Disease and COVID: Survey Findings With Dr. Horowitz
Lyme and COVID symptoms overlap
Survey findings
Questions remain
Lyme disease and COVID continue to raise questions for patients living with persistent symptoms. To better understand these experiences, I conducted a survey involving individuals with a history of Lyme disease and discussed the preliminary findings with Dr. Richard Horowitz.
In this video discussion, Dr. Horowitz and I reviewed the early survey findings and considered the questions they raised for patients with Lyme disease. The survey was subsequently published with Sean McWhinney in the peer-reviewed journal Antibiotics.
Published study: Consequences of Contracting COVID-19 or Taking the COVID-19 Vaccine for Individuals with a History of Lyme Disease
The goal was to understand how COVID-19 infection, vaccination, and Lyme disease symptoms may interact in real-world settings.
While surveys cannot establish causation, they can identify patterns and questions that deserve further investigation.
Why Lyme Disease and COVID Create So Much Uncertainty
Patients with Lyme disease may describe symptoms that overlap with Long COVID, including fatigue, cognitive dysfunction, sleep problems, dizziness, and exercise intolerance.
This overlap creates uncertainty for clinicians and patients trying to determine whether symptoms reflect Lyme disease, COVID-19, Long COVID, or more than one condition.
Learn more about brain fog in Lyme disease and persistent symptoms after Lyme disease treatment.
What the Published Survey Examined
The published cross-sectional survey included 889 individuals with a history of Lyme disease. It compared groups who had contracted COVID-19, received a COVID-19 vaccine, or neither.
The survey examined patient experiences involving:
- COVID-19 infection and Lyme disease symptoms
- Fatigue and overall symptom burden
- Cognitive and neurological symptoms
- COVID-19 vaccination experiences
- Long COVID
- Persistent symptoms affecting multiple domains
The findings demonstrated substantial variability among participants. Nearly one in five participants with a history of Lyme disease who contracted COVID-19 reported Long COVID.
Participants reporting Long COVID also described a greater neurological symptom burden than participants who contracted COVID-19 but did not report Long COVID.
However, the survey did not include a comparison group without a history of Lyme disease and was not designed to determine whether Lyme disease increases the risk of Long COVID.
Did COVID Worsen Lyme Disease Symptoms?
One concern discussed with Dr. Horowitz was whether COVID-19 infection could trigger a worsening of symptoms in individuals with a history of Lyme disease.
The published survey found that the overall symptom burden among participants with a history of Lyme disease was not significantly different after contracting COVID-19. However, participants who reported Long COVID had significantly worse neurological symptoms than those who contracted COVID-19 but did not report Long COVID.
These findings do not establish cause and effect. They highlight the importance of carefully evaluating changes in fatigue, cognition, neurological symptoms, autonomic complaints, and exercise tolerance following infection.
The clinical overlap between Lyme disease and Long COVID can make it difficult to determine which condition—or combination of conditions—best explains persistent symptoms.
What Did the Survey Find About COVID Vaccination?
The survey also examined experiences following COVID-19 vaccination.
The overall symptom burden was not significantly different between vaccinated and unvaccinated participants with a history of Lyme disease. Neurological symptoms were significantly lower among vaccinated participants than among those who had not been vaccinated.
Participants reported varying short-term experiences following vaccination. These findings describe associations within the surveyed population and should not be interpreted as proof that vaccination caused improvement or worsening of Lyme disease symptoms.
Individual medical decisions should be based on a patient’s health history, risk factors, and discussion with an appropriate healthcare professional.
Why These Findings Matter
Survey data provide insight into clinical questions that remain understudied.
Patients living with Lyme disease who contract COVID-19 may experience uncertainty, overlapping symptoms, and difficulty determining whether a change represents Long COVID, an exacerbation of an existing illness, or another medical condition.
The publication of these findings gives researchers and clinicians an opportunity to better understand patient experiences and identify questions requiring additional controlled research.
Dr. Horowitz’s participation in the video discussion offered an additional commentary on the preliminary findings. He was a discussant in the interview but was not an author of the subsequently published study.
Frequently Asked Questions
What did Dr. Richard Horowitz discuss with Dr. Cameron?
Dr. Richard Horowitz and Dr. Daniel Cameron discussed preliminary findings from a survey examining COVID-19 infection, vaccination, and symptom burden among individuals with a history of Lyme disease.
Was Dr. Richard Horowitz an author of the published survey?
No. Dr. Horowitz participated in the video discussion of the preliminary findings. The subsequently published study was authored by Daniel Cameron and Sean McWhinney.
Did the survey prove that COVID-19 worsens Lyme disease?
No. The survey identified symptom patterns and associations but could not establish that COVID-19 caused Lyme disease symptoms to worsen.
Does a history of Lyme disease increase the risk of Long COVID?
That has not been established. Nearly one in five surveyed participants with a history of Lyme disease who contracted COVID-19 reported Long COVID, but the study did not include a comparison group without a history of Lyme disease.
What did the survey find about COVID vaccination?
The overall symptom burden was not significantly different between vaccinated and unvaccinated participants. Neurological symptoms were significantly lower among vaccinated participants, although the survey could not establish causation.
Clinical Takeaway
Lyme disease and COVID-19 may involve overlapping symptoms affecting fatigue, cognition, sleep, neurological function, autonomic regulation, and exercise tolerance.
The published survey describes patient experiences and identifies questions requiring additional research, but it does not establish that COVID-19 or vaccination causes Lyme disease symptoms to improve or worsen.
Careful history-taking remains essential when evaluating new, persistent, or changing symptoms in patients with a history of Lyme disease.
Related Articles
Long COVID or Lyme disease? Key differences
Autonomic dysfunction and Lyme disease
Persistent Lyme disease overview
Lyme disease fatigue
References
- Cameron DJ, McWhinney SR. Consequences of contracting COVID-19 or taking the COVID-19 vaccine for individuals with a history of Lyme disease. Antibiotics. 2023;12(3):493.
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
Resoundant no to vaccine. propylene glycol,,,,,,,,,polusorbate,,,,,,,graphine oxide/hydroxite. All allergic to all of them. Long term studies for example 10 months out would be more accurate.
Interested on up dates having stage 3 Lyme disease
Dr. Horowitz discussed the early results with me. He is the link https://danielcameronmd.com/covid-lyme-disease-survey-first-findings-a-discussion-with-dr-horowitz/
I am still encouraging anyone with Lyme disease even if they have never had COVID-19 or taken the vaccine to share their experience to allow me examine the questions in more depth. Here is the link to fill out the survey. https://danielcameronmd.com/lyme-disease-covid-survey/
I have had chronic Lyme. I always carry some old diminished symptoms. I had both of my covid shots and the booster. I had moderna shots and was impacted from all three for a few days. Mostly very tired. I got covid in January. I had was sick with a very bad cold for at least 14 days. I just got bit by another tick two days ago. Found it attached and engorged. I estimate it was on for over 36 hours. It was quite painful. I now have a bullseye. Any suggestions on treatment. Doxy for 10 days?
In my family we have a number of us with chronic Lyme, either from years of misdiagnosis for my wife and me, or congenital for our children. Three of us got the. Moderna vaccine and two got pfizer.
My reaction to the vaccine was that it only.made me tired for a few days after the first injection. Nothing after the second. My wife was completely knocked down with headaches and muscle pain combined with an overall flu-like feeling for about 3 days to a week for both injections. Our 22 year old daughter had a similar reaction.
Oh Pfizer daughter had a similar, but more intense reaction to both shots, but her 13 year old daughter who is in the next generation of congenital Lyme had no reaction.
All in all, we are not seeing any residual affects of the shots on our Lyme. I still have many of my old symptoms..
Hi . I am new to this forum. My 16 year old son had Covid in late July 2021 ( likely delta) and on day 12 had severe hives that needed a trip to the ER. They resolved after a few days and he recovered however he contracted Lyme disease later in the summer/ early fall. The acute case of lyme has caused sudden onset of hypothyroidism and Hashimotos disease, weight loss of 15 lbs and extreme fatigue. His immune system had likely not recovered from Covid when he got the lyme. He just finished a month of doxycycline and we are retesting his blood this month and next month to see if the thyroid resets. Anyone with any insight would be appreciated
I have not found blood tests useful as a measure of success. I sometimes order a test a month after starting treatment to check if another tick borne illness is present or to rule out other illnesses. I have to use clinical judgment to determine treatment even without COVID-19
My son contacted Lyme Bart Babs in utero. He also had heavy metal poisoning which resulted in form of autism & high levels of tetanus etc He was diagnosed by Dr. Jones 15 years ago.
He suffers from debilitating fatigue that has not yet been managed. When he was tested for allergies within minutes of those pricks; he was raging. It was scary. Luckily I had a foot detox bathe.
I’m petrified of additional damage or even worse, if he gets the vaccine. My father pressures my son about it.
What would we do if he had a reaction?
Thank you!
Ranson’s mom
Tara