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.
Julie
04/08/2021 (7:03 am)
I had no idea other lyme patients have had problems like I had to the vaccine!
I got my first and only COVID vaccine on March 7th. I was hospitalized overnight for observation on the 9th with a fever, worst headache ever (saying a lot,) non-stop vomiting that didn’t respond to anti nausea meds, sweats, chills and general flu like delirium.
For background; I have been disabled since 2010 having left an awesome job as a full time university museum photographer due to mystery flares of profound fatigue, unexplained muscle burning and agitation, blurred vision, body pain, recurrent herpes flares, insomnia and chronic migraines.
My disability has been based upon my migraine diagnosis although no doctor could explain the worsening mystery flares I’ve been having since the mid-2000’s other than them possibly being related to the chronic herpes virus. (I had no idea I had herpes until 2008.) It must have been latent as my partner at the time was negative. In 2018 I was hospitalized for two days with Lyme meningitis after a new tick bite and subsequently have had severe acute flares of Lyme in 2019 and then all throughout 2020 when I became progressively sicker with neurological issues (blurred vision, lack of coordination, rage, mental confusion.) there were no new tick bites in 2019 or through the Winter of 2020.
After finding a reasonably competent local rheumatologist in the early Spring 2020 who tested me for literally everything under the sun, including a spinal tap for both herpes and Lyme, I was diagnosed with neurological Lyme. My C4a was 6800. A month on IV Rocephin in October 2020 provided a huge amount of relief. I now suspect I may have had a smoldering case of Lyme since the mid-2000’s based upon symptoms which became neurological with the new bite in 2018. I literally walked away from my identity and lifelong career as a photographer. Luckily I had good benefits through my university; although it took an 18 month fight with two sets of attorneys to get on SSD as well as my long term university disability.
I now have a new LLD in Syracuse who upon hearing my reaction to the vaccine strongly cautioned me to think very hard about getting the second one. Honestly I was crushed despite being filled with abject terror at my upcoming 2nd vaccine appt. I know I’m very sensitive to histamines (and hyper-sensitive to many medications), but other than that had no idea my immune system would be so hyper-reactive to the vaccine. My primary care now agrees that I should hold off on the second. Luckily my friends and family are all successfully having both doses of the COVID vaccine.
My new LLD suspects co-infections of either or both Babesia and bartonella; one of the glands in my neck has been off and off swollen in addition to constant sweats, neuro symptoms and severe rage flares. Or possibly lingering Lyme. Some though not all of my Lyme/co-infection symptoms have returned since getting the first vaccine dose.
I reported my reaction to the CDC, but like many here now distrust the CDC after what I’ve learned over the past year about the split in the medical community regarding Lyme. Our local infectious disease doctors are an absolute joke. It’s not worth elaborating, but needless to say despite multiple acutely positive bouts of Lyme they literally sent me out the door with zero tests despite being wildly symptomatic. Their arrogance is/was confounding. Incidentally I live in the country on a farm and face high exposure to repeated tick bites.
I’m so relieved to find out from this blog I’m not alone in having a severe or adverse reaction to the COVID vaccine. I am still pro-vaccine in general but know that like every vaccine based upon the millions of doses safely given there will always be a tiny cohort than has an adverse response.
I’m starting another round of antibiotics in another week once I become acclimated to the supplements my LLD prescribed to take in conjunction.
Thanks for reading.
Julie
Nancy
04/08/2021 (10:53 pm)
Thanks for sharing about your Lyme and your reaction to the vaccine in detail.
Could you please share the name od your LLD in Syracuse, NY?
Julie
04/09/2021 (3:39 pm)
I just started seeing Dr. Heidi Puc at Integrative medicine of CNY
Becky Engelby
06/26/2021 (10:52 am)
I acquired Lyme in 2014 after it went neuro with on-going flare-ups. I consulted my doctor regarding getting vaccinated and she strongly recommended Pfizer as the safest option. I also have Multiple Chemical Sensitivity after the city sprayed Roundup and 2,4-D that poisoned my dogs and I in 2010. In 2018, I was diagnosed with Stage IV endometriosis and have now had 2 surgeries to separate my organs. I was hesitant to get the vaccine but I was told it would be dangerous for me if I contracted COVID with my other conditions so I did. For the next five weeks my feet and legs were swollen to the point of extreme pain when I tried to walk. Felt like tendons were being pulled from my bones. Fatigue, joint pain, night sweats and brain fog was bad too. I declined the second shot.
Monica Davis
04/06/2021 (6:55 am)
I have had chronic Lyme since Oct 2018, and received my second Pfizer vax on 3 April. I left my “Lyme specialist” Summer 2020, b/c I honestly felt like she dooped me, just throwing expensive supplements my way and never seeming to truly care about me – and go figure, within a month of stopping all her recommended treatment, and creating my own routine – I started feeling better. Better than I have in years. I would even go as far to say my Lyme went into remission when I took control of my own treatment. So I was nervous about the vax, but had recently (and finally) receive my tetanus shot without any issues. I had waited to get it b/c I was told I may have a bad reaction due to my Lyme being so active. So I stopped treatment, felt better, got my tetanus shot, had no symptoms, and felt better about getting the COVID shot. First shot was on 12 March, I felt tired and had minor arm pain. That was it. I was feeling SUPER energetic, super joyful, and all my Lyme symptoms were at bay. My biggest Lyme symptoms are cognitive decline, anxiety and panic, irritability, fatigue, sensitivity to light and noise, joint and muscle pain, and GI issues (yeah you guys get it). After my second vax on 3 April, I was soooooo tired the night of, slept okay, and as an avid athlete, woke up the next day, pushed through and did what I would consider a mediocre cycling workout and took my dog for a long walk. Was still relatively okay around 6pm that evening, but at 8pm I began feeling super irritated, anxious, and tired. I went to bed, had night terrors, and woke up with a fever (so this was yesterday). I spent the entire day on the couch, it was 70+ degrees outside, so then I felt really depressed about not doing anything. I ended up having crying spells last night, and my irritability was through the roof. I cried myself to sleep, had more night terrors, and this morning I am feeling exhausted and had a small fever that has now gone away. I have some brain fog, headache, I am feeling really low, and my appetite is gone. I am going to give it a few more days, but I really believe that the vax reignited my Lyme symptoms. I probably didn’t help matters stressing my body by working out either (but I did that after the first shot and was fine). I am just hoping these symptoms are temporary, and not my Lyme coming out of remission with vengeance. Even though it has been over two years after my Lyme diagnosis, I feel like a newbie in the Lyme world, so seeing this article has made me feel less alone and heard. I look forward to reading more. Thank you for reading 🙂
Kristie
04/06/2021 (5:06 pm)
Monica,
I am so sorry to read your reaction. I am quite worried about getting the vaccine so will be watching for an update on your symptoms over the next few days. Hopefully it’s temporary and you will be feeling better soon.
karla scarlatti
04/01/2021 (10:12 pm)
I’ve had Lyme and Bartonella for 30 years, and mostly I’ve managed well with herbs. Unfortunately, 2 years ago I went into anaphylaxis and for months after had to deal with a whole histamine drama that was totally new to me. ( These days I never know when an avocado, or yogurt, or some unknown thing will make my face swell up and cause difficulty breathing). I want to get the Covid vaccines (J&J, so I only have to do it once) but my concern is the possibility of another over-dramatic response or just more reactivated Long Lyme . I’ve decided to stick with an anti-inflammatory diet for the next few weeks, and I’ve ordered some Buhner tinctures for calming cytokine cascades. If anyone here has other suggestions or ideas, I’m really eager to hear them! Thanks. I’m wishing you all the best, as well.
Tina Osberg Rhode
04/05/2021 (7:26 pm)
I had read with great interest comments on lyme and covid vaccine-I saw alot of negative results from taking the vaccine, and now I can add myself. I am 73, got lyme age 65, had a tick on me for 2 days, southern NH, could not get treatment at all for 2 months(dr was in Boston). (took the prophaletic, had no rash). Tick tested positive for lyme. now a slow non ending progression, eyes, mouth sores, both knees front and back, numbness-fatige, sciatica shooting pains. I thought I was going to die when I had the shot 10 days ago, shortness of breath, heart, walked around to get a grip-since then exaggerated lyme symptoms, fatigue, feel ill. Felt I had to get some protection, but if these symptoms do not resolve, not taking the 2nd Pfizer shot. Way back when I saw Under My Skin, and it saved me psychologically-that was me and no one understood or believed me (same old story I guess).
Leslie
04/05/2021 (7:48 pm)
I’ve been dealing with Lyme and babesia for about eight years. I am now also the 24/7 caregiver for my mother since her stroke. ( this is almost impossible because I can barely take care of myself). I got my mother fully vaccinated for COVID and her only side effects were a sore arm and a slightly elevated temperature. Needing to be able to bring in caregivers I weighed the risk/benefits of my condition vs vaccination for myself and decided it was worth the risk. Unfortunately I had a bad reaction to the Pfizer vaccine. I expected to feel worse than most people but I was not prepared for the severe spinal cord inflammation that occurred about five hours after that first shot. I was unable to sit or stand due to the heat and pain along the length of my spine , and even taking a deep breath was extremely painful where my ribs joined my spine. Thankfully this agony only lasted about seven hours and then started to fade away , leaving me with more common symptoms of just a sore arm and fatigue and nausea. I am sad that I cannot take the second shot. But after this experience I know I can’t.
Catherine
03/30/2021 (10:25 am)
Are you participating in the CDC survey using their app?
Susan
04/16/2021 (5:05 pm)
Why would you want to take the second shot after such a severe reaction!? I have had Lyme disease over 10 years. Was treated finally by a LLD for 2 years and went into remission for 5 years. Then started having migraine like headaches again which my doctor said was the babesia. I have been in treatment again for the last 3 years mainly for babesia and bartonella. I have had leaky gut issues and allergy issues ever since contracting Lyme disease in the 1990’s. I have learned to live with these chronic issues by taking herbs, supplements and digestive enzymes every time I eat!! I also have constant ringing in my ears and constant watery eyes and anxiety. I also have glaucoma. The insomnia has gotten better, but I still have joint pain, rib pain, restless legs and muscle twitching at night. I have done research on the vaccines and hear that people with allergies should be cautious because the mRNA is incased in PEG which about 70% of the population is allergic to and can cause reactions. The vaccine was fast tracked through the system therefore did not go through all the safety trials. It is not FDA approved yet and they are unsure of the long term effects. I have read it is not recommended for anybody with immune dysfunction, autoimmune diseases, cancer, diabetes, Lyme disease and EBV. I personally don’t choose to be a lab rat…..I believe in a more cautious wait and see approach. Besides I choose to be proactive with my health by taking supplements like vitamin D, C E and zinc etc. to keep my immune system strong rather than going straight to the vaccine first. I am not anti-vaccine either! I work in health care and usually get the flu shot.
Dennis P
03/29/2021 (7:54 am)
5 days ago, I got a tick bite which resulted in a raised redness area at the bite site. I suspect it’s the beginning of Lyme disease. So I guess I will need a Lyme disease antibiotic. I am between doctors as mine has retired. I am scheduled to have the 2nd Moderna shot in 2 days. My question is how long I should wait between the 2nd Moderna shot and Lymes treatment.
Dr. Daniel Cameron
03/29/2021 (8:31 am)
Good question. I wish there was an answer. I have advised my patients to follow the Moderna schedule to achieve the immunity described in the trial. Your doctor will have to decide if the raised redness is from the tick bite or from Lyme disease.
Kris
03/29/2021 (9:08 pm)
I have what the CDC terms Post Treatment Lyme Disease Syndrome as I was treated at onset 11 years ago with a couple of weeks of amoxicillin after testing positive (I was lucky my doc recognized the symptoms as I didn’t have a bullseye rash) but had Lyme flares after treatment for many years. I have been doing pretty well with only maybe one bad flare the last 2 years so am quite worried about the unknown of the vaccine and if it would reignite Lyme symptoms. Any thoughts on post treatment Lyme patients and the vaccine? Has anyone had better luck with the J&J vaccine?