Should Lyme disease patients with an impaired immune system get the COVID-19 vaccine?
The Centers for Disease Control and Prevention (CDC) posted mRNA COVID-19 vaccination considerations for people who have a weakened immune system. “People with HIV and those with weakened immune systems due to other illnesses or medication might be at increased risk for severe COVID-19.” [1] Individuals with Lyme disease, who may have an impaired immune system, have expressed concern over the vaccine.
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.
Related Articles:
Are you reluctant to take the COVID-19 vaccine?
Opinion: Low COVID-19 vaccine trust among Lyme disease patients
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
Jennifer harrington
04/15/2021 (8:01 pm)
I have chronic Lyme disease and have had the moderns vaccine. I’ve had a reverse in my chronic fatigue and have more energy than I have in years. Just hope it continues! I was more afraid of getting covid 19. Just a personal decision
Margaret
04/16/2021 (8:32 am)
Hi, thanks for sharing your response. I have had chronic Lyme Disease for the past thirty years. Three days ago I had my second vaccine (Moderna). I had the flu for one day, and have felt weak the past two days but am recovering. The weird thing is that my Lyme symptoms are better! I have had minimal or no aches since I got the vaccine, and I had been waking up extremely achy every day before. This may be a temporary side effect of the vaccine, but I’ll take it! As for getting the vaccine, for me there was no contest between strong reaction to vaccine versus getting covid. The last thing I want is another chronic illness. Everyone must decide for him/herself.
Margaret
04/16/2021 (9:44 am)
Every Lyme patient seems to have a different compilation of symptoms. For that reason, I believe that each of us must decide what is best for our own unique health situation. That includes making an informed decision about the pros and cons of getting the Covid vaccine.
Simon Templar
04/20/2021 (4:08 am)
That’s great news, Jennifer. I hope your improvement continues, too.
Like many others, I’ve also been unsure what to do. There’s so many conflicting opinions.
Again, congratulations. Stay well.
Jess
08/25/2021 (12:52 pm)
Hi Jennifer. Could you tell me how you are doing now after the 2nd dose of Moderna?
Michelle Girod
04/12/2021 (4:06 pm)
I met w a new Lyme doctor today and she advised me not to get the vaccine at this time, she would like me to wait a couple weeks to see if any new data comes out regarding Lyme and our immune system. I’m very confused what is the right thing to do. I get a lot of pressure from family and friends that I need to get the vaccine. They say since your immune system is compromised why would you not get it? I said that’s exactly why I should not get it.
Dr. Daniel Cameron
04/13/2021 (7:59 am)
Thanks for sharing your concerns. I have Lyme disease patients in my practice who are facing the same tough decision. Normally my patients would wait. Unfortunately, the virus does not always wait. And the virus can affect the immune system.
LoriAnne Sewick
04/15/2021 (12:24 am)
Same thing happened today with advice from my doctor. He said to wait for the J & J to come back. The Pfizer and Moderna won’t jive with my Chronic lyme. Plus I have hypothyroidism with half of my thyroid deformed and missing, malaria and cat scratch fever was also found on my test for lyme.
Julie M.
05/01/2021 (7:47 am)
Hi there – While I’m very pro-vaccine in general I had an extreme reaction to my first Pfizer shot and landed in the hospital overnight. My immune system basically went into hyper-drive.
It’s a tough decision. My new LL Dr. recommended me seriously reconsider getting the 2nd vaccine. I broke down in tears, but once I decided not to go through with it I felt an immense wave of relief. Everyone’s body is different. I’ve had undertreated Lyme for a long time now so I suspect my immune system is even more whacked.
Best thing to do is sit with yourself and the decision. I too felt a lot of pressure from my family and friends who are now all vaccinated.
They need to understand our medical situation is a determining factor.
Personally I’m glad I got at least one but the way my body reacted lends me to the belief that a second would be risky. (I had uncontrollable vomiting, fever, chills, worst headache ever (next to Lyme meningitis) along with extremely high BP which is super unusable for me.)
Good luck. Ultimately it’s your decision.
Priscilla
03/27/2021 (10:26 am)
I am 73 years old. I was diagnosed with Lyme 5 years ago. Treated at onset for 10 days and had negative test. 10 months later I was in extreme pain and tested positive. Treated for 2 months with doxycycline. 6 weeks after treatment – symptoms returned but at a much lower pain level. The truth is I am very concerned about the vaccine and it triggering a stronger Lyme reaction. I’m being pressured by my family to get the shot. I would like to do a wait and see as I am able to quarantine.
Dr. Daniel Cameron
03/28/2021 (9:02 am)
As you can tell from the comments there are Lyme disease patients who describe a flareup of their symptoms. The only reason the COVID-19 vaccine is being discussed is due the severity of the virus from some patients. It might be helpful to weigh the risks and benefits with your doctor.
Nancy
03/24/2021 (5:46 pm)
Dr Cameron,
First let me thank you for putting this resource out there. This is a very overwhelming decision for us who have been ill for so long. I have chronic Lyme as well as recently diagnosed bartonella infection. I’m not on any treatment at this time other than anti seizure meds, gaba, pain meds and a few vitamins. I am on limited fluids because I have very low sodium 119 due to a medication im on. I also have hashimotos, Cfs, fibromyalgia, low sodium, Epstein Barr and several other co infections. I not doing any treatment at this time. I am slightly overweight as well. I developed a very painful neuropathy in my feet about 8 months ago and it’s near impossible for me to walk, wear socks, shoes, even slippers. We’ve found nothing that works on my pain and sleeping is nearly impossible. A punch biopsy has been ordered. I need help. First, Ive read that you are recommending patients get the covid vaccine. I have an appt for a moderna and a j&j. Do you recommended one over the other? Also, are you taking new patients. I’m not sure I’ve found the right fit for me and my issues. I may be seeking out a second opinion.
Thanks so much for you help.
Dr. Daniel Cameron
03/25/2021 (8:23 am)
I have reluctantly supported the vaccine because of the risk of short and long term complications of COVID-19. I walk my patients through the risks and benefits that work for them. I have not seen a difference between the vaccines, yet. I am taking new patients.
Sheila T
08/02/2021 (3:04 am)
I am also undecided about getting the covid vaccine not knowing the long term effects of it. I have chronic Lyme, babesia, bartonella, (since 2008) and hashimoto (hypothyroidism) since 1997. I’m literally on disability due to chronic Lyme disease and new my primary who is not Lyme literate says I should get the vaccine because he did. Ummm that’s messed up cause he’s not me nor suffers from my auto immune diseases. I’m reaching out to you and others suffering from Lyme and co-infections that received the vaccine and their side effects. With this vaccine becoming mandatory I’m really confused and need guidance. Thank you for your time.
Dr. Daniel Cameron
08/02/2021 (12:39 pm)
I hear the same concerns. I have patients who have had a flare-up following the vaccine. Most of them are doing well. I would encourage you to fill out the surve at https://danielcameronmd.com/lyme-disease-covid-survey/ to share your experience and concerns even if you never take the vaccine.
BTW I have encouraged my patients to consider getting the vaccine because of the risk of an acute COVID illness. I have to take them through the risks and benefits. The survey will help with that discussion.
Kelly S.
03/20/2021 (10:51 pm)
I have chronic Lyme, fibromyalgia, CFS, and Hashimoto’s (but the only one anyone ever believes is Hashimoto’s, lol). I had Covid 19 last summer for about 6 weeks (high fever the first ten days, low grade after that, general flu-like symptoms). I did not go to the hospital and my Covid test was negative, but after I was better and had bloodwork done, I had antibodies so my doctor said that I did indeed have Covid 19. I got the 1st Moderna vaccine last Thursday 3/11/21. I was very sick beginning the next morning and had a fever for 4 days. The following 5 days have been much better but I get a headache around midday and begin to feel very fatigued. I’ve been off from work this week so I’ve been able to take a nap for about an hour or so when that happens. Sometimes it helps and the headache goes away. Sometimes it doesn’t (like today). That’s where I’m at now. I go back to work Monday so I hope I’m feeling better and headache free. I’m worried about the second dose of the vaccine in April. I cannot afford to be sick another week. I have recently read that people who have had Covid 19 may still have lingering antibodies which cause a stronger reaction to the vaccine and they may not need a second dose. I’m on the fence about getting the next shot in April.
Sarah S
04/13/2021 (11:36 am)
Hi Kelly, I have chronic lyme, hashimotos, candida, ebv, and other co-infections as well. My symptoms were similar to yours and lasted a solid 8 days. It was absolutely horrible and I am scared of the second shot as well, but I’m also trying to weigh the risk of vaccination vs. contracting covid-19. I am going to review my symptoms to the 1st dose this afternoon with my doctor to get her opinion on the second shot. My symptoms were pretty severe, days 1-4 horrible fatigue, could not get out of bed, body aches, intermittent ear aches and headaches, loss of taste and appetite and on day 5, I had shortness of breath and wheezing just for one day. I almost went to the ER but it subsided late in the afternoon. It was still very scary though because nothing like that has ever happened. I am attributing it to the shot because I don’t know what else could have caused that.
Diane
07/14/2021 (2:22 pm)
Hi Sarah…. Thank you for your 1st vaccine experience… would you be so kind as to share an update of your journey today?