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

woman receiving lyme disease vaccine

I have Lyme disease patients who do not trust the COVID-19 vaccine. Apparently, there is also a low trust for the COVID-19 vaccine among Black Americans, writes P.R. Lockhart in an NBC News article entitled, “Experts warn of low Covid vaccine trust among Black Americans.”[1] The Black American concerns are similar to the concerns of Lyme disease patients.

Some individuals with Lyme disease do not trust the COVID-19 vaccine. They are not alone.
As the author points out, a December poll by the Pew Research Center reported that 71% of Black respondents knew someone who had been hospitalized or died from Covid-19, yet fewer than 50% of Black Americans polled would get the vaccine.

“Many of them fear that the vaccines aimed at stopping the spread of Covid-19 will be harmful to Black Americans.”

My patients are concerned that the vaccine will be harmful to their immune system. Some Lyme disease patients developed autoimmune issues after receiving the Lyme disease vaccine. The vaccine by SmithKline Beecham was pulled off the market by in 2002. The manufacturer was unable to determine if the autoimmune issues reported by patients was, in fact, due to the vaccine.

But right now, the one thing that may be more important than getting vaccines in the hands of Black Americans is increasing their trust in the process that created it, and in a medical system that has mistreated them in both the past and the present.

Some of my Lyme disease patients have lost trust in the CDC in addressing their issues. The CDC took years to acknowledge that the number of cases of Lyme disease were at least 10 times higher than that the numbers reported in their surveillance program. When they adjusted their figures the actual number of cases skyrocketed from 30,000 to at least 300,000 per year in the U.S. alone.

The CDC also took years to acknowledge the existence and severity of chronic manifestations of Lyme disease. And then, the CDC only acknowledged the existence of Post-Treatment Lyme disease Syndrome (PTLDS). Studies have shown that PTLDS patients suffer from pain, fatigue, difficulty thinking, and poor function for at least 6 months after antibiotic treatment. Between 10-20% of Lyme disease patients develop PTLDS. Furthermore, the CDC has concluded that patients with ongoing symptoms do not have an active infection, even though there is no reliable test that can determine if a persistent infection has cleared.

“The reality is that their worries have been earned and will not be corrected until medicine and public health and the government reckon with the past and what has been done to Black and brown people.”

Medicine and public health and the government have not reckoned with the past.

Others have said that they want to wait and see how the first wave of vaccine distribution is handled.

COVID-19 remains a concern for my Lyme disease patients. Some of my patients are taking a wait and see approach to the vaccination, given their concerns with medicine, public health and the government.

  1. Experts warn of low Covid vaccine trust among Black Americans by P.R. Lockhart in NBC News. https://www.nbcnews.com/news/nbcblk/experts-warn-low-covid-vaccine-trust-among-black-americans-n1250743 Last accessed 12/12/20.

218 Replies to "Opinion: Low COVID-19 vaccine trust among Lyme disease patients"

  • Cynthia
    01/27/2021 (11:15 pm)

    I had Lyme disease in 2017 and had some residual joint pain in my right wrist until maybe a year ago. I received the Moderna vaccine on January 5, 2021 and by January 15, I could barely hold a hairbrush in my right hand. My wrist swelled up like when I was originally diagnosed with Lyme disease. I started taking ibuprofen and within a few days the swelling was down and it felt so much better but the pain has not subsided yet. I’m debating on getting the second dose. I don’t want long term pain. I know there are no guarantees. Side note, last year I had Covid with no repercussions regarding my Lyme’s disease.

    • Dr. Daniel Cameron
      01/28/2021 (6:51 am)

      I am happy to hear your Lyme disease did not get worse after contracting COVID-19.  I am sorry to hear you had pain and swelling after your vaccination. 

    • Suzanna
      02/04/2021 (1:16 pm)

      Hi Cynthia,
      Hoping you and Dr. Cameron will see this… can you tell me what you ended up deciding? I diagnosed with Lyme and babesiosis a couple months ago, but at the time was, to my knowledge, asymptomatic (it came up in routine bloodwork), and based on some sort of levels in my blood, my doctor (just my primary, not an LLMD) told me it was a recent infection, and put me on 3 weeks of ceftin bc I can’t tolerate doxy. *more below about why I’m not believing anymore that it’s a recent infection, but first my question about the vaccine…

      I got my first moderna dose on 1/6, and had some normal reaction symptoms for a couple days (headache, chills, nausea) but nothing major, but then my stomach continued to have issues, and now I’ve been dealing with some level of gastro pain and other gastro issues, tiredness and aches in my back and trunk area on and off for a month. I’m scheduled for my second shot tomorrow and I’m really worried it’s going to be a worse reaction than the first.

      Dr. Cameron…
      Is it actually possible to tell when someone was infected with Lyme based on levels in the blood? Because although my doctor was confident it was recent, I have been dealing with a “mystery illness” since 2015 after getting a terrible virus…all of the acute symptoms went away after a few days, but I had 6 solid months of shortness of breath (feels like someone pressing on my diaphragm), which finally abated, but now I get episodes of the same whenever my body has a big upheaval, and the same tired/achiness/gastro issues I described above. I’m wondering if all this time, it was the Lyme/Babesia, and my doctor is mistaken in his belief that the infection is recent…

      Thank you for any response. This has been really overwhelming to deal with in the middle of the pandemic. I also waited a month and a half to get in with a local LLMD, who I ended up not feeling comfortable with, and I just feel really adrift and unsure of what to do now, and with my second shot scheduled tomorrow, I’m starting to panic.
      Any advice is greatly appreciated.

      • Dr. Daniel Cameron
        02/04/2021 (7:01 pm)

        Thank you for sharing your symptoms after the vaccine. We are all still learning about the vaccines and COVID. The severity of COVID-19 for some individuals some of the time makes everyone make tough choices.

        You are likely referring to an IgM Western blot test.  I find some patients in my practice have IgM for months to years without progressing to an IgG western blot test.   Some doctors toss the IgM western blot as a false positive if the IgG does not become positive within a month.  I have had to rely on clinical judgement. I have also had to rule out other illnesses. I have had patients who have had Babesia without developing a positive test. Again I have had to use clinical judgment.

  • Scott
    01/24/2021 (1:01 pm)

    Does Lyme disease allow one to be higher up on the priority vaccine waiting list? I have many lasting issues from my ongoing 10 battle with Lyme and Co’s. Specifically severe neurological, muscle wasting, severe digestive issues, Mast Cell, etc. etc.

    Thanks, Scott

    • Dr. Daniel Cameron
      01/25/2021 (3:13 am)

      I have not seen Lyme disease or its complications included on a priority vaccine list. Sorry.

  • Heather
    01/22/2021 (10:14 am)

    Hello Dr. Cameron,

    Thank you so much for your post. I’ am 52 years old, have had Chronic Lyme Disease for 20 years and was infected with Rocky Mountain Spotted Fever in 2019 which almost took me out. I received the Moderna Covid 19 vaccine on 1/20/2021. Though I luckily did not have an acute allergic reaction, I have felt pretty lousy with flu like symptoms including, nausea, systemic joint aches, low grade fever, chills, and exhaustion. These are common side effects of the vaccine I have read. However this is my first of two vaccines. The second is supposed to be worse! Yikes! It’s a conundrum as with 400,000 people dead on this country alone and millions infected with Covid, I wanted this vaccine. I intend to get the second one. I have elderly parents, one with Alzheimer’s. In order to care give, I need the vaccination. I do fear for chronic illness uptick as I’m so flattened post vaccine. Thank you for all
    You do, Heather

  • Dorothy Welborn Smith
    01/20/2021 (2:57 pm)

    I had Lyme,,babesiosis and ehrlichiosis all at once in MA in 1999. Lyme again in 2013 and 2014. Since having anaplasmosis in 2015 that is what keeps recurring every year. And now this year twice in a few months. Every illness occurred after a death of a family member. This year my daughter after 5 years with lung cancer. I’ve just finished 3 months of doxycycline 100 2x a day without cure. How can I improve my immune system. I have no allergies and always have a flu vaccine. I am 87 years old and my only health problem is the tick disease which nearly keeps me from walking.

    • Dr. Daniel Cameron
      01/22/2021 (3:21 am)

      I have advised my patients with a history of multiple tick borne infections to be sure they have been adequately treated. For example, doxycycline is not effective for Babesia. I also advise my patients whether they are 87 or 27 to avoid alcohol and simple sugars, exercize, and seek out emotional support of friends, family or a doctor. I also review their health to make sure there is not an underlying illness that has been missed. That is a start.

      • Marcie Wolf
        02/07/2021 (9:34 pm)

        Dear Dr. Cameron,
        I have been diagnosed with Lyme and Babesia. My symptoms are improving after several months on antibiotics. I walk mile most days, and occasionally hike from 3-7 miles on a weekend. I’m an avid mushroom hunter (yes, that’s how I got bitten). Why would I stop exercising?

        • Dr. Daniel Cameron
          02/07/2021 (10:59 pm)

          I encourage my patients to exercise even it they have to start slow.

    • Richard Sauerer
      01/27/2021 (7:08 pm)

      Google “VitalPlan Dr. Rawls” … a natural supplement regimen for Lyme’s Disease sufferers. I’ve been on the supplement regimen for several years after a tick bite without any need for antibiotics. It’s been a life saver!

    • Micah Torrez
      02/02/2021 (3:36 am)

      Disulfiram is the only thing that worked for me for Lyme and babesia

      • Janet Hess
        03/20/2021 (7:04 am)

        Hi –
        Did you get the Covid Vaccine? If so which one? I have a close relative on Disulfiram also and we were wondering if there would be a reaction with the Covid vaccines? One doctor said ok to have but we are cautious because of a possible interaction with polyethylene glycol in Pfizer snd Moderna vaccines.

  • Tracey Silver
    01/18/2021 (5:37 pm)

    Dr. Cameron, Thank you for this blog. I have had Lyme since 1997. The good news is I have been feeling well for a good 3 years. I am concerned about the Covid Vaccine. I had a Malaria Vaccine in 2007 before I took a trip to India and had a relapse of Lyme from the vaccine. I fear this will happen again with the Covid Vaccine. I have not had any vaccines since, not even a flu shot .My questions are: If someone was to have an allergic reaction to the vaccine, would that be known immediately? What might be some of the signs of an immediate allergic reaction? If someone was to have a Lyme relapse post covid vaccine, I would imagine this would happen over time? This is such a difficult decision.

    • Dr. Daniel Cameron
      01/18/2021 (6:32 pm)

      Great question. I would suspect an allergic reaction reaction would occur early. I am more concerned with delayed symptoms if one gets the COVID-19 vaccine or is left with the risk of long hauler COVID.

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