Should Lyme disease patients with an impaired immune system get the COVID-19 vaccine?

Jan 15, 2021

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People can have an impaired immune system from an overactive and underactive immune response. “A strong immune system responds appropriately to the challenge; a weak immune system may over-respond or under-respond,” explains Kostoff and colleagues in the journal International Journal of Molecular Medicine. [2] Should Lyme patients get the COVID-19 vaccine?

They added, “A weakened immune system appears to be the main determinant of serious/fatal reaction to viral infection (for COVID-19, SARS, and influenza alike).”

Lupus, rheumatoid arthritis, and Hashimoto’s thyroiditis are examples of an over-response of the immune system. Lyme disease is another example of an overactive immune response. [3]

The CDC report touched on the risk to individuals with a weakened immune system in developing a severe COVID-19 infection. [1] It acknowledges that there is limited safety data on the use of the mRNA COVID-19 vaccination in individuals with an impaired immune system. “Information about the safety of mRNA COVID-19 vaccines for people who have weakened immune systems in this group is not yet available.”

The report pointed out that, “People with weakened immune systems should also be aware of the potential for reduced immune responses to the vaccine, as well as the need to continue following all current guidance to protect themselves against COVID-19.”

The CDC guidance report was issued to allow individuals with a weakened immune system to make “an informed decision about receiving the mRNA COVID-19 vaccine.”

The authors point out that there is little information above the vaccine’s impact on individuals with autoimmune conditions. “They should be aware that no data are currently available on the safety of mRNA COVID-19 vaccines for them.” Nevertheless, the authors advised treatment.

Editor’s note: It is clear that COVID-19 can be severe for some individuals. There is a paucity of information on the risks and benefits of the mRNA COVID-19 vaccination for Lyme disease patients. I have been advising my patients to take the mRNA COVID-19 vaccination based on a review of the risks and benefits. Some doctors have advised against taking the COVID-19 vaccination based on their risk and benefit assessment.

Are you reluctant to take the COVID-19 vaccine?

Opinion: Low COVID-19 vaccine trust among Lyme disease patients

Researchers race to develop Lyme disease vaccine

References:

Vaccination Considerations for Persons with Underlying Medical Conditions. Centers for Disease Control and Prevention (CDC). https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/underlying-conditions.html Last accessed 12/31/20.
Kostoff RN, Briggs MB, Porter AL, Aschner M, Spandidos DA, Tsatsakis A. [Editorial] COVID19: Postlockdown guidelines. Int J Mol Med. Aug 2020;46(2):463-466. doi:10.3892/ijmm.2020.4640
Aucott JN, Soloski MJ, Rebman AW, et al. CCL19 as a Chemokine Risk Factor for Posttreatment Lyme Disease Syndrome: a Prospective Clinical Cohort Study. Clin Vaccine Immunol. Sep 2016;23(9):757-66. doi:10.1128/CVI.00071-16

Comments

174 responses to “Should Lyme disease patients with an impaired immune system get the COVID-19 vaccine?”

Ann Maher

01/16/2021

If we Lyme disease Patients have a choice of Vaccines, which one would you recommend.!.

Reply
1. Dr. Daniel Cameron
  
  01/16/2021
  
  I am unclear which is the best vaccine. Sorry.
  
  Reply
Elicia Brand-Leudemann

01/16/2021

What if you have Lupus and Lyme Disease. Do you still recommend getting the COVID vaccination?

Reply
1. Dr. Daniel Cameron
  
  01/16/2021
  
  I have been following the findings for individuals with autoimmune diseases including Lupus. I have not seen an issue despite their impaired immune system. Individuals with Lupus present with an overactive immune system as in Lyme disease. The CDC advised individuals with autoimmune disease to take the COVID-19 despite the paucity of evidence.
  
  Reply
  1. donna
    
    06/02/2021
    
    seriousley in all due respect Dr C . The cdc also said postlyme did not exist and we all know that story, I would never listen to them. I suffered too many years of hell and thanks to DR R and llmds like you Im alive.
    donna
    
    Reply
Ellen Marshall

01/16/2021

Thank you for keeping this discussion current. I am of the wait and see crowd. Also I must point out that having been so sick with Lyme and co-infections for decades, the my answers to the standard screening questions for Covid-19 could all be yes.

In other words, it is hard to think of throwing one more thing at my immune system.

Reply
1. Dr. Daniel Cameron
  
  01/16/2021
  
  I wrote this blog to capture the uncertainty of making a decision whether to risk the effects of COVID-19 affecting the immune system or the COVID-19 affecting the immune system.
  
  Reply
Kathleen Meyer

01/16/2021

Since the beginning of my Lyme journey in 2012, age 55, I have been advised to use my best judgement regarding flu vaccines etc. I believe the 2012 vaccine caused a chain reaction which set off a long dormant Mononucleosis, age 18. I was very sick for 4 weeks, 2-3 of which I was bedridden and unable to walk normally. I believe the flu vaccine caused or contributed to my downfall. I have not has a flu vaccine since then. I am very reluctant to have ANY vaccines right now. I would like to see an article from Lyme patients and what their reactions are to getting a Covid vaccine. I will wait and see. My Lyme is now in remission and I’m walking again.

Reply
1. Dr. Daniel Cameron
  
  01/16/2021
  
  Great comments. I understand your reluctance. I am also hopeful the Lyme disease can share their experience with COVID-19 or the COVID-19 vaccine to help individuals make an informed decision.
  
  Reply
Christine DeSimone

01/16/2021

Twenty two years ago my Lyme Specialist told me not to do any vaccines and not donate blood.

Reply
1. Dr. Daniel Cameron
  
  01/16/2021
  
  I share similar views on donation of blood given the problem with Babesia. The risk of a COVID-19 infection is high enough to question your doctor’s advice on the vaccine. I find the risk of COVID-19 is worse that the risk of the COVID-19 vaccine.
  
  Reply
  1. Lauren
    
    01/17/2021
    
    I think it’s not a one size fits all, COVID. Everyone reacts differently. I had it and was grateful not to have been hospitalized, but was close. None the less I would not get this vaccine due to my lack of immune system from chronic lyme. My doctor advised me to not get an updated tetanus shot due to my immune system being weak. Unless there are lyme patients willing to be guinea pigs, I think it will be a few decades to see true reaction and effects of this vaccine for everyone regardless of their health issues or lack there of, especially in the lyme community. Thanks for the info and your honest thoughts Dr.
    
    Reply
  2. Dana
    
    01/22/2021
    
    Dr. Carmeron,
    I was advised about not getting vaccine by my LLMD when I was first Diagnosed a very long time ago. Two things.
    1.
    I had Covid19 was like have a really bad case of the flu.
    I had a high fever bad cough, congestion, I had to use my oxygen, I had no energy, my Dr did end up writing me a
    prescription for cough medicine.
    So I am not sure where getting the vaccine is worse than getting Covid19 especially if the vaccine sets off a reaction in your body with your immune system and your Lyme goes crazy. Or worse you get covid from the shot. Please don’t tell that doesn’t happened I have many friends of mine that are ER Doctors, Covid Doctors and Nurse that have gotten the vaccine and got Covid19.
    .
    
    Reply
    1. Dr. Daniel Cameron
      
      01/22/2021
      
      The COVID-19 is produced using a messenger RNA. The COVID-19 vaccine is not a virus and therefore cannot cause COVID-19. We do not know if the vaccine can lead to changes in the immune response of individuals with or without COVID-19.
      
      Reply
      1. ST
        
        04/20/2021
        
        Your ability to respond to such questions while also not getting entangled in the pseudoscience is great. You’re like a Ninja who also knows the Jedi mind trick.
2. dawn
  
  06/02/2021
  
  same here my LLMD
  
  Reply
  1. Susan
    
    09/11/2021
    
    Dr. Cameron,
    I was treated for late stage Lyme back in 2002 by LLMD after being undiagnosed for 8 years. Was on high doses of antibiotics, with plaquenil and kept on antibiotic for maintenance for a year or so after my symptoms improved. Although nothing like what I experienced back then, I continue to have pain in my joints, especially my knees, inflammation and chest pain. A vaccine mandate has gone into effect at my work and I was able to get a medical exemption from my doctor for holding off on the vaccine at least for now. I am really struggling with the decision as I know I cant go back to being in bed most of the time, feeling like I cant function and not being able to work again like when my Lyme was at its worst, should I have a bad reaction to the vaccine. I think about how having Lyme for that long without being treated more than likely changed my immune system and its response. I get the flu shot because work requires it and have had symptom flare ups. I remember when I was finally diagnosed with Lyme and treated with high doses of antibiotics, I felt like I was getting so much worse and told my LLMD I didnt know how much longer I could continue treatment and he said that feeling worse in the beginning of treatment was a good sign because my body was fighting the Lyme. I keep thinking if I take the vaccine my body could have the same reaction if not worse since these vaccines are supposed to produce a high inflammatory response. It is such a scary time and trying to decide what to do has been very stressful. I am also concerned for my daughter who is 14 now and was hospitalized for over a week with Lyme two years ago. She was finally treated and her symptoms improved to a point where she could get out of the wheelchair and go back to school. She is now on the soccer team at school and is finally able to get back to living her life again. She still has breathing issues, chest pain and some joint pain as residual effects, but overall is doing better. There has been a stronger push for vaccination in her age group and I hold all of the same concerns for her in trying to decide what is best for her. My husband, who works in healthcare, got Covid 4/2020. He ended up with long hauler, was out of work and in physical therapy since 12/2020. He is just returning back to work on a part time basis now. I’ve seen the impact Covid had on him and on some of our close friends and do not want to get Covid. I am so thankful that I didnt get it and my daughter and son didnt either when he had it. I was surprised being in such close contact with him, I didnt get it and tested negative for antibodies. Everything I hear and read has been a mixed bag of information and nothing seems definitive. I worry about us not being protected, but worry just as much about my daughter and I having a major setback with Lyme. Do you know if they have started any clinical trials on long term Lyme patients with any of the vaccines yet? I havent been able to find information on it. My LLMD is excellent but has now retired. I’m looking for a new LLMD. I’m in MA and was wondering if you know of anyone? I feel like I need more guidance on this from someone who is Lyme literate and understands the reasons Lyme patients are having such a difficult time right now trying to navigate through all of this. I find this blog to be extremely helpful to be able to see what other Lyme patients are experiencing and your responses as well. Thank you!
    
    Reply
    1. Joseph cook
      
      01/08/2023
      
      I have chronic Lyme no luck been sick off and on since I 2017 got flu shot and caused more flare ups best of luck. Nasty Lyme. Took lots of fun out of me. Each day. Is who knows. No shots for me
      
      Reply