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

Dec 13, 2020

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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.

Lyme disease vaccine for humans: would you trust it?

Questions linger about the efficacy of the Lyme disease vaccine

Researchers race to develop Lyme disease vaccine

References:

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.

Comments

218 responses to “Opinion: Low COVID-19 vaccine trust among Lyme disease patients”

Vera

02/11/2021

I was diagnosed with Lyme Disease in May of 2007, was treated with doxycycline for one month, then again for 3 months, and had no reoccurrence of symptoms until 3 years ago when I was prescribed a statin for my cholesterol. Within a week I was having pain that made me believe I was having my first Lyme flare. I no longer take any statins, and have had no further issues. I received my first dose of the Moderna vaccine on January 7th, and experienced nothing but an ache in my arm. Received my second dose on February 5, and 15 hours later awoke with that familiar pain I had experienced when diagnosed with Lyme. Tylenol seemed to help somewhat with the pain, but then the fever and chills hit. Basically I was down for three days with fatigue aches and fever. My upper arm was red, warm and felt sore to the touch for 4 days. None of my coworkers experienced symptoms at the level I did. I am healthy and active, and work as a Physical Therapist Assistant, so am no stranger to different types and/or causes of pain. I firmly believe my reaction has something to do with my past Lyme diagnosis. I am interested in the experiences of others concerning the Covid vaccine.

Reply
1. Dr. Daniel Cameron
  
  02/11/2021
  
  I am sorry to hear you had symptoms after the second vaccine. Thanks for sharing. I know my other had problems the second and fourth day after the vaccine. She has never had Lyme disease. She is well now and turning 91 this week.
  
  Reply
Alex Harman

02/11/2021

My girlfriend is currently taking cefTRIAXone IV issued antibiotic once a day. She’s on day 9 of 28. This is her third bout with Lyme in 20 years. She is 44 years old. Would you recommend waiting until her treatment is complete before getting a COVID vaccine? Would the antibiotic lessen the efficacy of the vaccine?

Reply
1. Dr. Daniel Cameron
  
  02/11/2021
  
  I have typically advised my patients to postpone vaccines until they finish treatment. The severity of COVID-19 for some people leaves us with some risk of waiting. I have had to work with my patients based on risk benefit discussion. BTW, I do not believe the antibiotic would reduce the effectiveness of the vaccine.
  
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Lisa

02/05/2021

I’ve had 2 acute Lyme infections, one last summer and one the summer before. Both seemed to respond to 5 weeks of antibiotics. I got the 1st Moderna vaccine on December 29. Two days later I began the very specific and familiar symptoms of my previous Lyme infections (headaches, fatigue, and tingly pinprick sensations in my limbs). I live in the Northeast and my outdoor time this winter has been minimal, with the exception of long walks only on pavement, and picking up just a few sticks as yard cleanup. For that reason, I could not imagine that I contracted a Lyme infection, and wondered if this had something to do with my recent vaccine. As the weeks and symptoms progressed, I finally decided I should get tested for Lyme again. Sure enough, I was shown to have an acute Lyme infection.
Since my exposure to the normal deer tick environment was basically non existent, I can’t help but wonder if the vaccine may have triggered some latent Lyme in my system. How likely do you think this could be?

Reply
1. Dr. Daniel Cameron
  
  02/06/2021
  
  Thanks for sharing. I have patients with an overactive immune system after Lyme disease. They have a similar immune response to multiple events including stress, simple sugars, and antibiotics for other illnesses. I also have patients whose IgM western blot reappears over time. I can’t tell if it a recurrence, a new infection, a vaccine, or a false positive. I have to use clinical judgement to determine whether antibiotic treatment is necessary.
  
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2. Tracy
  
  02/06/2021
  
  I had my second dose of covid vaccine two weeks ago ….I developed an infection around injection site and been dealing with the uptick in my chronic Lyme . My Lyme has been “dormant” for 3-4 yrs. I am not again on antibiotics for my Lyme as well as the infection and steroids. If I had to do it again with Lyme I would not .
  
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  1. Dr. Daniel Cameron
    
    02/07/2021
    
    Thanks for sharing you experience.
    
    Reply
  2. Lori Boettinger
    
    02/11/2021
    
    Thank you for sharing your thoughts. I’ve been chronic with Lyme since 2007.
    In addition, I received a S.O.T. treatment (antisense) in June of 2020 to battle the BB bacteria.
    My doctors have advised me not to receive the vaccine because my immune system is hyper-sensitive. If given the vaccine, the cytokine storm is likely to occur for people with Lyme.
    The CDC has blatantly abandoned the Lyme disease communities and lied to us for many years.
    I trust my SOT and Lyme literate professionals much more than I will ever trust the CDC…. as well as WHO.
    
    Reply
Diann Hasseman

02/02/2021

I was treated for Lyme, Babesiosis and Ehrlichiosis with oral antibiotics for 3 years starting in 1998. I have been symptom free for about 15 years. I had the first Moderna vaccination on 1/14. Twenty-six hours later I started experiencing the neurological Lyme symptoms that I had when I was in treatment in the 90’s. These include numbness and tingling in the left side of my face, tingling in my head, tingling in my legs and mild tinnitus. It is now 2/2 and the effects haven’’t diminished. My doctor suggested getting an injection of Toradol. Would this be helpful, or could it be problematic for me? I fear getting the second shot.

Reply
1. Dr. Daniel Cameron
  
  02/02/2021
  
  Thanks for sharing your symptoms after your first covid-19 vaccine. It is tough to tell if side effects are related to Lyme disease after being well for 15 years. I am glad you have a doctor who can work with you regarding the risks and benefits. I have no experience to share regarding Toradol.
  
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Christina

01/31/2021

Hi there. I’m disabled with Lyme and every single one of its coinfections. I was in treatment for 8 years but haven’t been able to see my doc since the Pandemic began.

I am now 40 years old. I understand the risks of Covid-19 exposure, but not the risk factors of receiving any of the Covid Vaccines as a patient. Will you please elaborate on your concerns of vaccine usage for a patients like me who have multiple active infections, and organ/nervous system issues (MSIDS)?

Reply
1. Dr. Daniel Cameron
  
  02/02/2021
  
  I have a number of Lyme disease patients who share the same concerns. I have patients who have taken the COVID-19 vaccine. I have not seen any problems with the COVID-19 vaccines to date. I am watching.
  
  Reply
  1. K C
    
    04/25/2021
    
    My EBV is always high to where Drs think I have shingles but I don’t. I have lyme, POTS, NAFLD, Babesia and Bartonella, Dercum’s Disease, l treated with llmd- last round was disulfiram in 2019/2020- postmenopausal 52 with estring and scared to get the vaccine and scared not to get it too. With the J&J I read and was told least likely to cause issues but with estrogen ring worried about clots risks. Any ideas how long after ring removed that becomes a non issue and is Pfizer better option or should avoiding the shot be considered taking into consideration all my health issues. I am torn either way feeling at risk. Doctor, what is your latest update as to what you are seeing with your lyme patients and the vaccines at this time and suggestions? Are there others on the market we should be waiting for?
    
    Reply
    1. Dr. Daniel Cameron
      
      04/26/2021
      
      EBV levels are typically high in healthy patients. I do not have enough information regarding the length of time to wait for the vaccine. I have patients in my practice that have tolerated all 3 vaccine. I am not sure if other vaccines will become available.
      
      Reply
2. Kathy Rick
  
  02/02/2021
  
  I am also afraid to get the covid shot. I had Lyme and Bartonella for over 15 years before I finally got diagnosed right. I was IGenex positive for Lyme and Quest positive for Bartonella. I got sick on April 16, 1986. I had a huge bulls-eye rash on the top of my right foot. I had several CDC Lyme tests in 1986 but they were negative. I was so sick I had to crawl. I am now in a wheelchair because of severe POTS, I am in kidney failure, on my second round of lung cancer. My kidney doctor wants me to get a covid vaccine but I am scared. I react very poorly to vaccines, My immune system is so messed up that I get incredibly sick from just a cold. I have Hashimoto and have no thyroid gland because my immune system chewed it up and killed it. I couldn’t tolerate synthetic thyroid meds but I am fine with armour thyroid I am super sensitive to almost every medication., So trying to find out what everyone else with Lyme is doing with the covid vaccine>>
  
  Reply
  1. Dr. Daniel Cameron
    
    02/02/2021
    
    I have patients in my practice with the same concern.
    
    Reply
3. Barb
  
  02/05/2021
  
  This is my first post here. I had an operation to save my life in 1975 and was given a transfusion that infected me with several diseases that were not properly diagnosed until 2001. I was infected with Lyme, either uncomplicated malaria or Babesia ( the western Blot could have been cross reactive with either) and Hepatitis C. At the time I had Hep C ( late 1975 when I was 27YO) I was told it was non Hep A or B so not to worry. I was tested for Hep C when I turned 65 in 2014 and was positive. subsequent PCRs every 2 years say I’m negative, so I may have cleared Hep C in 1975. Lyme was a different and very long story as I was mis dx’d for years until I had ocular Lyme and was properly dx’d by PCR at Medical Disgnostics lab in NJ in 2001. I have been tested thru IgeneX every 3 years since, and remain IgG positive to this day. I had a lot of neurological symptoms with Lyme, so naturally I am a little leery of the Covid-19 Vaccines. I understand the differences in technology of the various vaccines and have thought long and hard about whether to get them. I have decided, that I will take the vaccine ( and I think it’ll either be Pfizer or Moderns mRNA vaccine) when it’s available to me – which should be at the end of Feb, beginning or March. I think the risks of Covid-19 outweigh the risks of the vaccines. I will report back after I get the first injection. I think everyone has to look at their own situation and weigh
  benefit to risk. It’s not an easy decision.
  
  Reply
  1. Barbara B Peck
    
    02/25/2021
    
    I am the Author of the above post (Barb 2/5/21). I received my first injection of the Moderna Covid-19 vaccine Monday 2/22/21 and I have had zero reactions over the last 3 days. My arm was a little sore the next day, but not even red or swollen. I had neuro Lyme pretty bad, so this was a big decision for me. I’ll report back after the second injection scheduled for 3/22/21.
    
    Reply
    1. KC
      
      03/23/2021
      
      Following. Eagerly awaiting your latest update.
      
      Reply
    2. Sam
      
      03/23/2021
      
      Following as well. Looking forward to your report / experience! – Sam from Seattle
      
      Reply
    3. Jenna
      
      03/31/2021
      
      I hope the second shot went well. I’d love to know how you did? I also have neuro lyme
      
      Reply
4. Pamela Cokeley
  
  03/24/2021
  
  I am 61 and had my first dose of Moderna vaccine today. I suffer from chronic Lyme disease, diagnosed in 2012 . I was sick for five years before being diagnosed and I’m unable to work. I suffered physical and neurological damage. I’m praying I won’t have a severe relapse. Just came out of a month long relapse with unbearable pain. Heavy dosages of Prednisone finally got it under control. Will keep you all updated.
  
  Reply