Lyme Disease and COVID: Survey Findings Discussed With Dr. Horowitz
COVID and Lyme disease may overlap
Patients reported symptom flare-ups and new concerns
Survey findings raise important questions
Lyme disease and COVID continue to raise questions for patients living with persistent symptoms. To better understand these experiences, we reviewed survey findings from hundreds of patients and discussed the results with Dr. Richard Horowitz.
The findings discussed here were later published and provide insight into how patients experienced COVID infection, vaccination, and symptom changes while living with Lyme disease.
Published study: COVID-19 and Patients with Persistent Lyme Disease: Experiences, Symptom Patterns, and Outcomes
The goal was simple: understand how COVID infection, vaccination, and Lyme disease symptoms may interact in real-world settings.
While surveys cannot prove causation, they can identify patterns that deserve further investigation.
Why Lyme Disease and COVID Create So Much Uncertainty
Patients with Lyme disease often describe symptoms that overlap with long COVID, including fatigue, cognitive dysfunction, sleep problems, dizziness, and exercise intolerance.
This overlap creates uncertainty for both clinicians and patients trying to determine whether symptoms reflect Lyme disease, COVID, long COVID, or multiple overlapping conditions.
Learn more about brain fog in Lyme disease and persistent symptoms after treatment.
What the Published Survey Found
The survey explored patient experiences involving:
- COVID infection and Lyme symptom flares
- Changes in fatigue levels
- Cognitive symptoms and brain fog
- Vaccination experiences
- Recovery patterns
- Persistent symptom burden
The survey findings, later published in the medical literature, suggested substantial variability between patients.
Some patients described worsening symptoms, while others reported little change.
Did COVID Worsen Lyme Disease Symptoms?
One of the most common concerns involved whether COVID infection triggered Lyme disease flare-ups.
Patients frequently described worsening fatigue, cognitive symptoms, autonomic complaints, and exercise intolerance following infection.
These findings do not prove cause and effect, but they highlight the importance of careful follow-up when symptoms change.
Symptom overlap between Lyme disease and long COVID may further complicate recovery and diagnosis.
What About Vaccines and Lyme Disease?
The survey also examined experiences following vaccination.
Responses varied considerably. Some individuals reported temporary symptom increases, while others reported no significant change.
Large differences between patients suggest individualized evaluation remains important.
Why These Findings Matter
Survey data provide insight into questions that remain understudied.
Patients living with Lyme disease and COVID frequently describe uncertainty, overlapping symptoms, and difficulty distinguishing one condition from another.
These experiences deserve additional study.
The publication of these findings offers researchers and clinicians an opportunity to better understand patient experiences in real-world settings.
Clinical Perspective
COVID and Lyme disease may share overlapping symptom clusters involving fatigue, cognition, sleep, autonomic dysfunction, and exercise intolerance.
The publication of these survey findings provides an opportunity to better understand patient experiences and identify areas requiring additional research.
Careful history-taking remains essential when evaluating changing symptoms.
Clinical Takeaway
Survey findings suggest Lyme disease and COVID interactions deserve additional study.
Understanding symptom patterns may help clinicians better support patients facing persistent or changing symptoms.
Related Articles
You may also find these articles helpful:
- Brain Fog in Lyme Disease
- Post-Treatment Lyme Disease Syndrome
- Autonomic Dysfunction and Lyme Disease
- Persistent Lyme Disease
- Lyme Disease Fatigue
References
- Cameron DJ, Johnson LB, Maloney EL, et al. COVID-19 and Patients with Persistent Lyme Disease: Experiences, Symptom Patterns, and Outcomes.
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