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"

  • Mary J. Rohlfing
    08/14/2022 (9:57 pm)

    I have been reluctant to get the current covid vaccinations because of all the side effects, namely many Lyme patients having a recurrence of their lyme that was in remission. The Novavax is now available in my area. Have any Lyme patients taken this vaccine, and if so, have you had any adverse effects? So far, I have not had covid and feel very blessed. I would appreciate any information on your experience with Novavax that you would like to share. Thank you!

    • Dharma
      08/20/2022 (12:20 am)

      Hi Mary, I feel like I live under a rock sometimes… and there’s SO much info out there nowadays.
      Alas this is the first time I’ve heard about NOVAVAX. I looked into it and it reminded me of something I took at the beginning of COVID called homeopathic Nosodes. An extreme dilution to innoculate the body with a 1/1,000,000 dilution of covid. I wonder if they’re similar. I have lyme (diagnosed 2020 and had it for unknown amount of years), and the nosodes worked great for me. I was exposed many times and only got it once. Not sure where to get the nosodes anymore.. ask your nearest naturopath?

  • JD Donovan
    03/01/2022 (12:40 pm)

    Pfizer vaccine brought my Lyme disease out of remission, it took 3 rounds of antibiotic treatment before getting it back into remission, 1st round Oral, second round IV for 21 days, then a third round of oral finally worked. My biggest symptom this time was insomnia. After 3 months of treatment I’m finally able to sleep more than 3 hours a night. My Lyme was in remission for approx 6 yes before the vax.

    • Kathleen Coleman
      04/06/2022 (4:49 pm)

      Has anyone from the covid vaccinations got nickel sized hives / plus red raised rash , facial swelling , swollen eyelids

      • Kathleen Coleman
        04/06/2022 (4:51 pm)

        I forgot to say my son has had both lymes disease and Tularemia, could the vaccine have caused a re-emergence of the tick borne diseases

      • tina
        04/29/2022 (10:12 am)

        Yes, my eyes have really been affected from the vaccines, and now I have contracted the omicron and one of my eyes is really swollen underneath-also my gums, I had a few long term swellings, and after the vaccine it spread to my whole lower jaw.

        • Michele
          06/12/2022 (10:52 am)

          My friend with Lyme and bartonella got huge hives starting on her feet and ankles and then progressed up her legs. She went to urgent care twice as it was affecting her breathing as it went up her body. This was after her second Pfizer shot. They put her on steroids. Even afterward, it took months for her feet rashes to subside.

          She later got IV NAD treatments in advance of her booster shot which seemed to work for about 2 weeks, when she drank alcohol and it reignited the hives and inflammation

        • Joan
          09/27/2022 (10:18 am)

          I have become very ill after taking the Moderna vaccine last year. I had Lyme in 2008 that went undiagnosed for over 1 year. After taking Moderna, my liver enzymes were very high and I lost over twenty pounds in a few weeks. After months of many of the symptoms mentioned here, I was diagnosed with PSC a rare disease of the liver. Now I wake up every day feeling as if it will be my last.

      • Joan
        09/27/2022 (10:25 am)

        Facial swelling and eyes swelling and rash on face, hair loss, joints locking, abdominal pain, tingling, burning and numbness, all over, near hypoglycemia, CFS, high liver enzymes, and finally, primary schlerosing cholangitis base on biopsy etc., all after receiving Moderna after being in I believe a remission from Lyme since 2010.

    • Lori
      05/22/2022 (5:55 pm)

      How many shots did you have I got the second booster Feb 14 ever since insomnia no sleep and like a histamine headache problem is don’t have a llmd right now she went awol and I am dying

    • Lori
      07/19/2022 (5:18 pm)

      Who do you see saw if yesterday think it’s addissons afraid it’s LD was treated for 8 years till 2016 but he’s retired never had a positive test if had it got it over 30 years ago

  • Tara
    08/05/2021 (6:55 pm)

    My son was born with LD. Anyone have exp w vaccine and being born w LD?

    He is being pressured now he’s 18. Is like to provide something to read but I’m assuming there is not alot out there.

    I believe he already has vaccine injury brain damage-from undiagnosed Lyme and getting vaccinated.

    Thank you!

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