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.
Jerry
06/05/2021 (5:17 pm)
I had Lyme for many years before getting diagnosed. A moldy house made my symptoms much worse. I had the house remediated. was also treated for a slight growth on my pituitary gland and returned close to normal health for 18 months. After my 2nd Moderna shot I started getting muscle and back pain. The back pain went away but the muscle pain and stiffness spread to my legs and arms. I feel as though the lyme has been reactivated. I am back on antibiotics and am using ozone. I’m hoping that this will subside soon so that I can go back to an active life. it is miserable.
Amy
05/22/2021 (12:33 am)
I had Lyme as a 12 year old and it resurfaced 30 years later though after 4 years of testing, I didn’t have a positive test . My provider diagnosed me with Lyme despite a positive test . I received the Johnson and Johnson vaccine two months ago . Last weekend, I went in to have routine bloodwork done . On a whim , I asked to have a Lyme test . Well, it came back positive . Now, I’m wondering if the vaccine triggered it ? I suppose I’ll never know but if I could do it all over, I wouldn’t have gotten the vaccine .
Sheila
06/28/2021 (4:35 pm)
Unfortunately, your not the only one. Had Lyme 2x, back in Early 90’s, and early 2000’s, tested positive both times, took Doxycycline both times, good to go! 4 weeks after J&J, get out of bed, searing fingers of fire from my feet to butt, pain and inflammation all over my body, old injuries on legs and arms flaring up, left knee so swollen, can barely walk, high elevation (1.71) of antibodies, but test borderline negative. I live in the “Lyme “ area, what it’s named after, many Lyme denying docs here, in Lyme disease land!!! crazy!!!Got the doxycycline after begging for it, got bad herx reaction after 4 pills. Going to get my gut and diet, pro-biotics, etc. in better shape and will try again with the rest. I will Never take another vaccine again!!!
Diane
05/18/2021 (9:58 am)
I was treated for Lyme and Babesiosis from 1998 to 2001 with antibiotics. My first symptoms were severe neck pain, headache and vertigo which abated with treatment right away. During treatment I had numbness and tingling in the left side of my face, mild tinnitus, a feeling of stiffness and lack of fluid movement, and mild difficulty with depth perception. I had a one time episode of a shower of floaters in my eyes and brief paralysis on my left side. For about 15 years I haven’t experienced any symptoms. I have been diagnosed with BPPV and have had bouts of vertigo after ceasing antibiotic treatment for Lyme. On January 14 I had the Moderna vaccine. January 15 I had mild tinnitus. The next day I had numbness and tingling in the left side of my face, pressure in the left side of my head, tingling in my lower legs, and mild twitching in my lip. The tingling in my legs went away after about a week. The other side effects were present for several months. I also had severe vertigo at the end of the 3 month period, worse than any vertigo I experienced before, which lasted 9 days. I went for vestibular therapy and was treated for crystals in the horizontal canal and the vertigo abated although I still get brief episodes of lightheadedness. I did not get the second shot of the vaccine on recommendation from my doctor. I am planning to have an antibody test next month., but I would like to have the second shot for travel. Still, I would be worried about getting the Lyme symptoms again.
Leslie
09/19/2021 (4:40 pm)
I got the Pfizer vaccine (2nd dose in May). Then almost 4 months after my second vaccine dose I had a severe bout of vertigo (BPPV). It was gone the next day, but high ear pressure, imbalance and a toxic feeling remain. My first Lyme symptoms in 2003 included inner ear infection and BPPV. I had a patulous eustachian tube in my right ear due to Lyme and that resolved after 18 years. Now I fear my left side has a patulous eustachian tube from this latest infection.
Still, I figure that Lyme didn’t kill me and covid could. Also want to protect my family and friends. So, I don’t regret getting the vaccine.
Eric
05/17/2021 (7:35 pm)
Not sure if anyone has heard about this but the Novavax vaccine is not only used to prevent Covid but it looks like it is effective against Malaria as well. I know many of us are on Malaria based drugs (plaquenil / malarone aka atovaquone) and the LLMD that i’m associated with is hopeful that the Novavax vaccine could be helpful to the Lyme community when it finally presents itself. I’ve heard quite a lot of issues with the J&J as well as the mRNA and have resorted to double masking only and continuing to be hermits until further notice. Just wish Novavax wouldn’t keep delaying its EUA which was supposed to be in May and now looks like July at the earliest. At least 10 years with misdiagnosed Lyme until igenix test proved positive, in a wheel chair for excessive lower body and lower back and hip inflammation for months at a time including severely swelled knees and ankles, Lyme heart carditis, chronic pancreatitis, significant glaucoma like issues, vicious gout and plantar fasciitis like symptoms flare ups, severe brain fog and bed ridden fatigue, high mycoplamsa pneumoniae and pertussis results. Tried every drug therapy, every tea, every herb, 1 year of Rocephin IV Nothing works. Nothing helps.
Kris
05/18/2021 (8:41 am)
I am waiting for Novavax as well as it seems to have a lot less side effects and all of these comments of re-triggered Lyme after the mRNA ones has me too scared. I am hoping they don’t keep delaying as it looks like a promising alternative to the other vaccines currently offered.
Candy
05/25/2021 (3:20 pm)
I am also waiting for the Novavax vaccine. My Lyme doctor says I might be able to handle that one . I’ve had chronic Lyme for over 10 yr because of delayed diagnosis and treatment.
Lynn Harris
08/20/2021 (9:12 am)
My experience was almost identical to that of Carolyn Glassford Ames. I live in the midwest, and was diagnosed with Lyme disease 2015, treated with 5 days doxycillin, but was not seen by a gp until the rash was a week old. I was very very sick for 6 weeks, then slowly improved. I continue to test positive for Lyme, and have the arthritic condition and general unwellness that goes with it.I received the Moderna injection April 6. My arm became huge and fluid filled the next day and very painful, and I experienced flu like symptoms. These progressed, rather than diminished. The chest pain and rapid heartbeat I had was like nothing I ever experienced before. I was afraid to go to the ER, as I was afraid I would get covid there. The chest pain diminished overnight. The headache I had also began at the back at the base of the skull, then wrapped around to my eye and teeth, but on the right side. I experienced cough, headache, fever, shortness of breath, cognitive problems, fatigue, general body pain, terrible diarrhea, nausea, altered taste/smell, most of which have only recently resolved. There is still mild chest wall pain present. My gp sent me for a covid test mid may, which was negative. I was able to get an appointment the first week of June at which time I was diagnosed with possible cracked ribs due to extensive, violent cough. I had a negative chest xray and was prescribed 7 day course of erythromycin. I am only just now beginning to feel somewhat well.
Dr. Daniel Cameron
08/20/2021 (9:47 am)
Thanks for sharing.
Tara McEown
09/20/2021 (11:38 am)
I have Lyme disease and I would like to know about vaccine exemptions. I read about ten of the comments all the way through and skimmed through about ten more. Each comment expressed negative side affects and worsening Lyme disease symptoms post CoVID-19 vaccination. Does anyone have any info about the process of getting legal documentation for vaccine exception in the basis of being immune system compromised from having a pre existing neurotically condition?
Korina Flint
09/22/2021 (7:38 pm)
I just know my personal experience. My doctor wrote a letter stating that I have a high likelihood of complications from the vaccine, due to auto-immune and inflammatory disease. I also have a history of reacting to the flu vaccine, which he included. I haven’t received an answer from my employer yet, but they are mandating the vaccine by 11/15/21.
I want to thank everyone for sharing their experiences. I’ve just agonized over this decision. It’s caused me so much anxiety. But I’ve fought my Lyme so hard to get to a point where I am functional again and it’s terrifying to think of starting over. You all have helped strengthen my resolve not to give into social pressure when I know myself and my body (given that I react unusually to almost everything, even mild natural treatments). Thank you!
Serena W
05/23/2021 (1:39 pm)
Thank you for chiming in about Novavax. I would like to hear more about it and do research on the trials that have been done and see what ingredients are in it.
Linda Skillett
09/25/2021 (1:15 am)
I’m so sorry. God bless you and praers.
Allie
05/06/2021 (10:24 pm)
While I do not have Lyme disease, I have for the last 23 years dealt with Chronic Fatigue and Fibromyalgia. In March I receive my 1st Moderna vaccine. Major flareup. I slept 22 hours a day for 3 weeks after that. Fatigue, brain fog, migraines, weakness and joint pain. I’m going on week 5 since my vaccine and the brain fog has lifted and I’m sleeping half the day now.
Discussions with my specialist concluded not to get the 2nd vaccine.
Thank you for posting your experiences. It’s hard to find other stories on the internet about bad reactions.
Amy
05/13/2021 (3:30 pm)
Curious if you are continuing to improve. I’m having the same reaction and need some hope.
Marcie
05/17/2021 (8:14 pm)
Hi Amy
I am in the same situation. I received the Pfizer and after the second dose my symptoms are really bad. I was feeling really good before the vaccine. Not sure how long this will last but keep posting if you have any improvements. I’m not even sure what to expect since this is so new.
Kathleen Coleman
06/25/2021 (2:47 am)
The same happened to my son after the 2 bd Pfizer shot he developed the same symptoms he had when he had Rabbit Fever from a tick bite Tularemia , he had confirmed case of Tularemia 4 years ago , seems like the covid vaccinations reactivated the symptoms , need blood testing to see if the Tularemia is back ?