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

Dec 13, 2020

—

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”

Shannon

03/08/2021

I was diagnosed with chronic Lyme and 3 co infections in 2018 and was treated for 6 months by LLMD. I felt better and was more active for awhile but have been in bed for most part since January 1, 2021. I have been struggling with some of the original symptoms such as extreme fatigue, nausea and diarrhea that comes and goes, loss of appetite and weight loss, nerve and joint pain, ect. There are no LLMD’s in my area and I would have to travel at least 5 hours to nearest one. My PCP has advised against getting the Pfizer or moderna vaccines and wants to wait on more info before making a recommendation of the JJ vaccine but I want to get vaccinated to get back to some kind of normalcy but like most of your subscribers I am afraid it will make me worse. Should I get retested for Lyme and it’s co infections given my symptoms before taking the vaccine as I read you did not recommended people with active Lyme to get vaccinated until after they were treated? Thank you in advance for your advice.

Reply
1. Dr. Daniel Cameron
  
  03/09/2021
  
  I would typically treat Lyme disease first before other vaccines. The risk of holding off on the COVID-19 vaccine is high. I would have to work the risks and benefits with each patient. I would also make sure that Lyme disease is adequately treated.
  
  Reply
  1. Dr. Daniel Cameron
    
    03/09/2021
    
    The Babesia antibody typically stays positive even if the infection is over. I base my treatment clinical presentation rather than the test. I have not reviewed information regarding the thrombocytopenia to answer your question.
    
    Reply
2. Rita Richter
  
  03/25/2021
  
  I had Lyme 6 years ago, got the first Moderna Vaccine last Tuesday and have been having all Lyme stsmtoms. Joint pain, low grade fever on and off, muscle facsiculations, not comfortable and twitching on legs and arms I will not be getting the second dose of Moderna!
  
  Reply
  1. Lorraine Bee
    
    03/25/2021
    
    Same Rita. I’ve been struggling with chronic Lyme for 20 years and was just diagnosed with babesia. I was on doxy briefly again before having my first jab. Moderna. I have been having painful stiff neck , chills, aches and now symmetrical joints pain , both knees, both hands, etc. whereas before it was asymmetrical. I have crushing exhaustion. Didn’t feel that exhausted before. Can’t eat dinner no appetite as I’m too tired to eat.
    
    Reply
Andrea

03/07/2021

Thank you all for sharing your experiences. The information has been very helpful.

I am struggling with the decision on whether to take the J & J vaccine. Is there any information on side effects for those with Chronic Lyme?

Reply
1. Dr. Daniel Cameron
  
  03/08/2021
  
  I have been waiting for more information. For now I had relay on my patient’s experience and my readers. Most of my patients have been taking the vaccine after discussing the risks and benefits. There are a few readers who describe a flareup after the vaccines.
  
  Reply
Susan J.

03/01/2021

I found this blog bc I was googling Lyme and Covid vaccine…why was I searching for that? Because I had my 2nd shot of Pfizer (2/18) and have been in bed ever since with exactly the same Lyme symptoms I had when first infected over 10yrs ago.

In 2010, after at least 2 yrs of a constellation of now-obvious LD symptoms, I tested “off the charts” (Dr’s words) positive for LD & also had antibodies for RMSF.

Eight months of antibiotics had no effect (still tested positive for active Lyme) and I was unable to afford a LLD, but I was helped greatly by Stephen Buhner’s herbal & supplemental protocol.

Although many of the symptoms came and went and I had some serious relapses, I have made progress getting my life back on track.

Then came Covid and a year later the much-anticipated vaccine. I was nervous but grateful that I was eligible. I was assured by on-site staff that LD was not a problem. The first shot of Pfizer made me feel a bit sick but that passed in a couple of days. The second shot was another story. The first thing that happened was dizziness & my blood pressure was tested at 190 over something. Regardless, I left to get home through yet another blizzard.

A day or so later it all started: fatigue/insomnia, headaches, stiff neck, brain fog, nausea, panic attacks, crying fits, irritability, light hurts , sound hurts, everything hurts. All the same symptoms I had when I first got Lyme. All the symptoms I’ve worked so hard to either resolve or manage well enough to function.

That’s why I found myself, laying in bed, googling Lyme and Covid vaccine.

I am both relieved that I’m not “imagining” this and so very sorry that some of my fellow “chronic” (or whatever they’re currently calling it) Lyme sufferers are having a similar reaction.

(For reference, I’m a 67 y/o British-born, white female, living in NYC.)

Looks like I need to start Buhner’s protocol from the beginning again. I don’t expect any help from the medical professionals available to me (I may have Lyme but I’m not an idiot). And, no, I won’t be getting a booster if/when it’s available. That’s the last vaccine for me.

Yes, we all do have to weigh the pros & cons. I just wished I’d had more info about the possible cons, js.

Reply
1. Dr. Daniel Cameron
  
  03/01/2021
  
  Thanks for weighing in.
  
  Reply
2. Lauren Gray
  
  03/03/2021
  
  I am a nurse, and I work the COVID unit for almost a year now. I was diagnosed with Lyme disease two years ago, and because Lyme disease is so unfamiliar in the south, no one really understands it. I got COVID in December, and I do very well. I received my 1st COVID vaccination a week ago and about 13 hrs later. All the neurological issues I had when I was first diagnosed with Lyme disease resurfaced and have not gone away. My hands are numb and tingling, struggling with brain fog, etc. I am very nervous about getting my second shot, and I have made the decision not to. If the second shot is supposed to be stronger than the first, and I take it, I am screwed. Like I said, being in the south, I do not think I was appropriately treated for Lyme disease, to begin with, but I am kind of at a loss now on what to do. It’s hard when you’re in the medical field, and you still can’t find someone to help you because they are unfamiliar with Lyme disease.
  
  Reply
  1. Dr. Daniel Cameron
    
    03/03/2021
    
    It can be difficult to determine whether the symptoms are related to Lyme disease, the vaccine or another illness. You should work with your primary. I typically advise including a doctor experienced with treating Lyme disease as part of your evaluation if the symptoms persist.
    
    Reply
  2. Julianne Fox
    
    03/09/2021
    
    I think you might want to considered a Lyme doctor is another state. My Doc in Washington state is Dr. Klinghardt trained and now take appointments over the phone. I know tons of great lyme doctors. You could also consult with Dr. Phillips who just recently wrote the book Chronic and see if you can get some good recommendations.
    
    Reply
    1. Dr. Daniel Cameron
      
      03/10/2021
      
      You can also call my office at 914-666-4665.
      
      Reply
3. Sam W.
  
  03/05/2021
  
  Susan, as a chronic Lyme sufferer, I have the exact same concerns. Sick (literally) and tired (literally) of “professionals” telling me my symptoms are not real. If they don’t believe Lyme is “a thing” how am I to trust their judgment on this? Like you, I’ve finally got my baseline manageable. And when I say “manageable,” it simply means I am not in bed regularly any more. It has been TWENTY years of struggle – going from a fit, active person to a sporadically quasi-functional person who can fake it for a day and then must sleep for two. I am so not anti-vax and my education is in biology and organic chemistry. I get it. I just DO NOT want to be bedridden again. Like, at all. I’ve already lost too much of my life. Not sure which way I’ll end up going on this but it seems like wearing a mask for the rest of my life is a reasonable option when the other choice may very well mean a huge relapse.
  
  Reply
4. Carol Ba
  
  03/07/2021
  
  Thank you for sharing your experience. A friend just brought to my attention, possible problems for us chronic Lyme sufferers with the covid vaccine. I came upon your comment while trying to educate myself on this issue. I’ve had Lyme twice, luckily the second time I didn’t get near as sick as the first. I reacted to the usual antibiotics used for Lyme the first time, and had to stop mid treatment. I’ve been told by a Lyme specialist that is why I keep having flare ups. I am currently recovering from a serious illness that culminated in the removal of most of my stomach to stop the weight loss caused by my stomach disease. I’ve lost over 1/3rd of my body weight and experienced severe malnutrition for several months. Although I have recovered from the extensive surgery and am only losing a pound every week to 10 days now, I’ve yet to regain my strength and endurance. I’ve been very careful, basically a hermit to protect myself from getting covid in this run down condition. I’m concerned for my bodies’ ability to handle the affects of the vaccine. Especially since I am notorious for reacting to vaccines. Was sick for 3 months after my childhood small pox shot and every flu shot I’ve gotten has made me sick for days. I gave up getting them. Talked to my pcp’s office, but you know how that goes… I am a 67 year old white female from north FL.
  
  Reply
  1. Dr. Daniel Cameron
    
    03/08/2021
    
    You will have to work with your doctors to make a tough decision as you you report that “you are notorious for reacting the vaccine.”
    
    Reply
Sandra

02/27/2021

Any updates from Chronic Lymers who have had the 2nd shot for a while yet??

Reply
Laurie Edelstein

02/25/2021

Hi,
Now that JJ has been approved- is it better for Lyme folks
that have mass cell activation. Have appt on Monday that I keep changing my mind/ if JJ is better will wait.

Reply
1. Dr. Daniel Cameron
  
  02/25/2021
  
  I have not seen any information on the effect of a COVID-19 vaccine on Mast Cell Activation. The vaccines are intended to introduce the protein spike from COVID-19 to the body. The Johnson & Johnson vaccine introduces the protein by adding the spike protein from COVID-19 onto another virus, Adenovirus 26. The virus can enter the cell but cannot reproduce in the cell. Adenovirus 26 can deliver the spike protein to the nucleus of the cell.
  
  Reply
  1. Kate
    
    03/11/2021
    
    So do you think the J&J one may be less risky and less likely to cause a flare?
    
    Reply
    1. Dr. Daniel Cameron
      
      03/11/2021
      
      I have not seen a difference, yet.
      
      Reply
      1. Souzan
        
        04/16/2021
        
        I got Lyme disease in 2005 and I’ve never gotten my energy levels back or my mental sharpness. Three weeks ago I had the J&J vaccine and I have been in agonizing joint pain since which are just like the original Lyme disease symptoms. It occurred to me that there might be lingering connections to Lyme disease I’m glad I found this forum to hear others have similar experiences.