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”

LA

02/19/2021

I had Lyme 10+ years ago and have lingering symptoms that wax and wane. I had my 2nd Pfizer shot a week ago and regret getting it. It is like the early days of Lyme all over again. Fully body aches, nausea, diarrhea, headaches, exhaustion, and brain fog. If this becomes an annual shot, I will probably pass on the boosters. But that is my personal opinion. Everyone should weigh their own situation with your doctor. Best wishes!

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1. Dr. Daniel Cameron
  
  02/19/2021
  
  Thanks for sharing.
  
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2. Matt
  
  02/20/2021
  
  I currently have the same symptoms. Got Lyme about 10 years. Had 2nd moderna vaccine 1 week ago. Feel awful ..headaches fatigue soreness how long did this last for you,
  
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  1. LA
    
    03/04/2021
    
    It has been 3 and a half weeks since and still not better.
    
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3. Liza
  
  02/25/2021
  
  Exact same for me. I was also diagnosed with Lyme through a positive ELISA and Western Blot over 10 years ago, and my symptoms still come and go. My reaction to the 2nd dose of the Pfizer vaccine has been awful. The typical symptoms of fever, fatigue, insomnia the first night after, body aches, etc. But then this awful headache in the back of my head set in, difficulty thinking, sore neck, and it’s been a week. I’m having second thoughts about any kind of booster as well.
  
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  1. Karen Joy
    
    04/06/2021
    
    BRIEF HISTORY: Six years before I was diagnosed with LD, I let an Allopathic nurse talk me into getting the flu vaccination in 2000, I had avoided all flu shots prior , intuitively sensing my immune system was not “normal”. I developed a fever that ran between 100-102 degrees for EIGHTEEN days. NO OTHER SYMPTOMS (no sore throat, cough, vomiting, dirarhea, more runny nose)! Resting MORE did not change these symptoms . I was diagnosed with Lymes Disease almost 15 years ago. I had really good luck with using Samento 2x daily after 7-9 months…slowly cut down the umber of drops and days taken starting 5 year ago (kicking myself –why did I do that?) and have had more fatigue and SI inflammation over the last 5 years . When the Pandemic hit, I realized I needed to “get back” to ramping up the daily doses of Samento . I’m 3 months in and counting!
    THE VACCINE (Pfizer dose one and two). I felt yucky first day after does one, improved but did not feel great. Just functional. Then on 11 days after dose one, I spike a fever (NO OTHER SYMPTOMS–sound familiar?), which lasted 4 days ..varied between 1-1.5 degrees. May appetite remained poor for 2-3 weeks. Fever gone, but still did not feel great.
    Not feeling feeling fully recovered, dose number two happened. fatigue was noticeable, just on the edge of a fever reach night. On day 14 after second dose, I spiked a fever again (appetite better this time) between 1-1.5 degrees above normal. Rest is helping slowly, but I still have to work 4 days a week. It has been about 5 days with fever this time and I still a good degree above normal.
    I am comforted to read these updates from fellow Lymes sufferers, at times freaked out! I have to surrender and listen to my bodies need for deep rest right now. THANK YOU DR CAMERON FOR CREATING THIS FORUM FOR US!
    BTW, when I search Youtube for video blogs about people with Lymes and their reactions to Covid vaccines, I found ZERO–is this a ” thing” other people have found strange , maybe a bit disturbing ? Grateful to find you all- glad I am not alone…
    
    Reply
Bobbie

02/17/2021

I have registered for the vaccine/Lyme webinar from GLA on March 3rd. I was hoping between you, Dr. Cameron, and the other health professional, I would arm myself with good information to make a decision of whether or not to get the COVID vaccine. I was sick on and off since the early 1990’s. I was only diagnosed 2.5 years ago with Babesia and borrelia. Treatment at the medical office where I was diagnosed was abysmal. Finally, in Jan., I started treatment with a very experienced and knowledgeable nurse practitioner who specializes in Lyme disease. I am on two medications and another one coming in a month. I am starting to feel better. Question: In the middle of treatment, would it be advisable to get the vaccine or should I wait?

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1. Dr. Daniel Cameron
  
  02/18/2021
  
  I typically advise my patients to postpone the vaccine if newly diagnosed and treated. I have had to question that advice given the severity of COVID-19 for some people. My patients have successfully taken the vaccine but some have shared their concerns on my blog and the internet. Everyone has to make their own decisions. Perhaps, your NP will help you.
  
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Maude Muto Cangiolosi

02/14/2021

Hi Dr. Cameron. You treated my daughter and were always so kind. I’ve been in remission from Lyme and Bartonella for almost two years now. I’m terrified of getting Covid and am considering the vaccine but fear reigniting my Lyme. Any suggestions? Thank you

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1. Dr. Daniel Cameron
  
  02/15/2021
  
  I am happy to hear your daughter is better. The fears around the vaccine have to be weighed against the fears of COVID-19. Not easy. I have had Lyme disease patients who have done well with the vaccine. I have patients with Lyme disease who have had COVID-19. My readers have shared their concerns to include a flareup in some cases. I am still advising the vaccine despite my concerns to date. My patients still have to make their own risk and benefits decision.
  
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Joan

02/13/2021

I got my 2nd moderna covid 29 vaccine yesterday, even though I was still experiencing some lyme symptoms flareup after my last antibiotic treatment in March — (first diagnosed in 2001 after Ill with it for 1 1/2 years)… I quit treatment back then after around 4 1/2 years of antibiotic treatment. Last year tested very positive for lyme, still. After the first vaccine I had very sore arm, but didn’t notice any new symptoms … Very sore arm from yesterday’s vaccine again, but very achy in all joints and fatigue, so I’ll see how long it lasts … My daughter in her late 30’s still has damaged lungs(60% function), and vocal chords after 8 months after having covid–she was not a smoker and in the healthcare field -my co-workers mom died last week of covid and she was 8 years older than me–after seeing what my daughter and her husband went through with covid, I decided to chance taking the vaccine…. Time will tell….

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1. Amber
  
  03/26/2021
  
  Joan, how are you doing?
  
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M Lawless

02/12/2021

I have had Lyme for a very long time. Probably about 30 years. I was told I had everything else my whole life but Lyme was never checked. 3 years ago after a horrible bout of arthritic lyme I was finally tested for Lyme and my levels were off the chart. I have now been diagnosed with neurological lyme.Just had my first Covid vaccine yesterday. Approximately 13 hours after I woke up with debilitating pains all over my body. Very similar to lyme pain but everywhere. I was nauseous, had a fever, intense chills, headache… basically all the side effects. Then I fainted and my husband heard it and was about to call 911. I came to and knew I would be ok so I didn’t go to the hospital. I wanted to share so others can think about getting this vaccine. It seems to be much more potent than other vaccines I have had in the past. I am not going to get the second one.

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1. Sandra
  
  02/26/2021
  
  Oh no, that’s terrible, M Lawless!!! I”m so, so sorry. (Chronic) Lyme basically turned my life upside down about 7 years ago, not fun at all, especially with difficulty getting diagnosed for years and years, then pretty sketchy/guesswork for treatment. Anyway, I got the shot today, and am so nervous!!! I’m ok so far, but it’s only been about 7 hours. I figure it may be awful for a week or so, but better than dying !? But if I get as bad as you after this first, I don’t know!! Good luck, I so hope it didn’t last too long!!
  
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