Opinion: Low COVID-19 vaccine trust among Lyme disease patients
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.
Related Articles:
Lyme disease vaccine for humans: would you trust it?
Questions linger about the efficacy of the 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.
Alyssa
03/28/2021 (8:58 am)
I just wanted to add my experience to help inform other people with Lyme. I’ve had long term Lyme for 11 years now with mostly neurological symptoms. I’m a 28 yr old female. I got the first shot of pfizer three weeks ago, and only experienced strange dreams and sleepiness for a couple days. Yesterday I received 2nd pfizer shot. A couple hours later I was very drowsy. Then I began feeling irritated and angry. I became confused and a bit delusional, I couldn’t recognize my father and I was saying very strange things to my parents (I live at home with them). After taking prescribed Xanax, the neurological symptoms calmed down a bit. Then I began having extreme chills and fluctuations in temperature, with unbearable ringing in ears. In the middle of the night I started throwing up. Almost 24 hours later, I feel a bit better. Was this horrific? Yes… but I would do it again if it means protecting myself and others from covid. I can only imagine how I would have reacted if I had actually contracted covid. I recommend staying with a close family member or friend if possible after getting the doses, if you have severe neurological Lyme like me.
Sam Flowers
04/06/2021 (2:31 pm)
20 years ago, I contracted Lyme and was undiagnosed for several years, spent a TON of money with no help. I was treating folks with lyme and advocating for them but in denial of my own condition. A patient said to me one day, “you have Lyme ” amazing. Life Finally, went on all organic fruits veggies, walking, and HBOT. I am a PT and a child on my caseload who has CP was using it and I went in with her. After the first time in, all of my neurological symptoms (extreme dizziness, spinal contractions with pain, fatigue, brain fog) went away, completely, I did 10 day rounds off and on for 2 years and have NO symptoms of Lyme. I feel so fortunate and want to share whenever I can. I know HBOT (oxygen) is expensive so I now have an ozone machine. I’m worried about the vaccine but am gearing up to get the first shot and see how I do. I also am a CA and Hep C survivor. And I”m vertical with good lifestyle choices. Best to everyone, Perfect storm!
Jason P
03/27/2021 (11:29 am)
So I was recently diagnosed with a new acute lyme infection. I was on doxycycline for 4 weeks. My main symptom was joint pain in my knee. I fished my antibiotics about 4 weeks ago and was finally feeling better. I was able to run again and felt like I was back on my path to normal. Last Wednesday (3/24/21) I had my first dose of the pfizer vaccine. Within 24 hours my knee pain started up again. At first it was just a slight pain when bending but now I can’t bend my knee. I have no idea of it’s related to the vaccine, I just find it curious that 24 hours after the vaccine, my knee pain that had been gone for weeks kicked up! I’m going to my PCP on Monday. Currently the joint pain has remained flat. With my lyme infection, the pain just ramped up until I couldn’t bend my knee much. I’m hopeful this is just a charged up immune reaction to the vaccine. I guess the will tell
Simon
03/25/2021 (10:02 am)
I had my covid vaccine 4 days ago and ever since my lyme symptoms have gotten much worse everything hurts neuropathy, muscle pain, joint pain, …certainly not looking forward to the second jab ..I wasn’t in remmision but was certainly having more good days than bad. hope this calms down soon
KATY
03/19/2021 (4:51 pm)
I had the Pfizer vaccine a month ago, now I have major joint pain flare ups, especially across upper back, hands wrists, arms , shoulders and more recently in my buttocks, and sleep problems and constant tiredness. I’ve had a load of blood tests done and nothing is showing other than my ongoing low WBC. I had covid in November but was offered the vaccine for work purposes. I’d been relatively free of Lyme symptoms for a couple of years after getting it 6 years ago. I will not be getting the booster that’s for sure but I also wonder how to treat myself moving forwards? Is it a case of treating myself for Lyme all over again with a protocol? At a loss with how to move forward and hoping this subsides and won’t be chronic forever.
Dr. Daniel Cameron
03/20/2021 (8:26 am)
I understand you had COVID-19 November 2020 followed by the vaccine February 2021. I wonder if part of the issues are long-hauler COVID-19. Your doctor will have to work out a plan.
Mike
03/17/2021 (3:15 pm)
I’m wondering what rate of abnormal post-vaccine side effects (beyond a few days) lyme patients are experiencing?
Also, if this is above the general population average, would this imply chronic lyme is an autoimmune issue, and not an active infection?
Dr. Daniel Cameron
03/18/2021 (2:27 pm)
I have the same question.