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.
Diane K
05/06/2021 (5:41 pm)
I was diagnosed with Lyme disease by an infectious disease specialist in 2012. I was given a cycle of doxycycline by my primary post diagnosis. By that point, I was barely able to walk. I had to use a walker and had major issues with my legs feeling like they were not there and other neuro issues. With time, I did get better and have functioned fairly well with Lyme. I received the 1st Moderna vaccine in early Feb and the 2nd March 13, 2021. The first went fine; a mild hack/cough and slight fever for a day. However, with the 2nd one it was quite a bit more serious. That evening I broke out on welts on my face; some the size of a half dollar. The injection was around 7PM and by the next morning I was unable to even stand on my own. I had to be helped out of bed. Both of my knees (mid shin to mid thigh) felt like there was a vice around them. I could not bend my knees and when attempting to stand they felt as if they might explode. For the first time in many years, we had to drag out the old walker so I could get around. Getting up/down from a chair or toilet was painful and near impossible. I found that if the chair was elevated high enough that my feet didn’t touch the ground that was somewhat easier. I gradually was able to step down to the use of a cane and now, almost 2 months later, I am walking on my own unassisted but still have lingering pain in my L knee. I’ve had a couple of Lyme tests run as this feels exactly like the disabling effects on my legs around the two years prior to my initial diagnosis and for some time after. 4 weeks post vaccine and the strangest thing has happened. The “bullseye” has reappeared in the initial spot. It had disappeared about 8 years ago. Since the 2nd vaccine, I’ve also experienced multiple rashes on my arms and back (same as 2012 and prior). My primary referred me to a rheumatologist and we’ve done labs, so far. MRI is scheduled for mid-month. I have absolutely no doubt that the 2nd Moderna vaccine has kicked up my Lyme with a fierceness. I called Moderna and reported this as a serious adverse event. I have not heard a word back from anyone.
Dee
09/11/2021 (11:30 am)
Have you reported your reaction to VAERS?
Maureen Davidson
05/06/2021 (8:40 am)
I am 69 years of age and was diagnosed with Lyme disease 9 years ago after having the chills and a bulls eye and big red circular patches appeared over my entire body. I was diagnosed with Lyme and given a 3 week treatment. I believe I was extremely fortunate in that I was diagnosed very early as I did not experience any other symptoms associated with Lyme. I never gave a second thought to receiving the COVID vaccine, which I took and shortly after my second dose I started to experience intermittent burning sensation in my legs and joint pain in my knees. It has been over three months and I assume this has to be associated with Lyme. In reading all the blogs I see most many people are using herbal treatment but I am absolutely clueless as to what herbs are successful in Lyme treatment. The internet is flooded with varying opinions for different therapies, I would appreciate any advice to help me navigate treatment.
Dr. Daniel Cameron
05/06/2021 (8:55 am)
Long hauler COVID-19 and Lyme disease are similar likely due to an ongoing overactive immune system. I typically recommend to my patients to look again at whether an antibiotic might be useful.
Cindy Brinkler
07/01/2021 (9:44 pm)
I used Kroeger Herb Product. .. SPK Formula with good results. I am 65 and had no more reoccurences for 15 years after having three bouts and months of antibiotic treatment in the first 7 yrs.
Cheryl G.
07/08/2021 (4:56 pm)
Maureen: Read the book Unlocking Lyme: Myths, Truths, and Practical Solutions by Dr. William Rawls – who also suffered from Lyme disease. There are several herbs mentioned there which are especially beneficial to gut health and reducing inflammation: Cat’s Claw is among the one recommended. Dr. Rawls also has ongoing webinars. It’s helped me to learn more – and I’m starting a herbal protocol now.
Lisa Wood
04/30/2021 (1:03 pm)
Hello!
I’m 35 years old strong, sporty woman but fightening with chronical Lyme Disease for 18 years. My LD was not treated never before but I felt so much different symptoms (strong headache with vomit, vision problems, anaemia, IBS, reflux, tooth, hair and skin problems and etc…). I found a doctor here in my Country, who is according to my symptoms and WB test say I have Lyme disease. We started my treatment more than 2 years ago. My treatment as well as all of the LD patient is very personal and special. But I’m going to acupuncture, infrasauna, massage, physioterapist and I’m getting some medicine of course.
But honestly my question is not related the Lyme disease but Covid-19 vaccine.
Last end of October I had Covid with minor problems. I’m saying minimal problems because I was not hospitalized. So I’m lucky I guess. I had fever for 1,5 days, weakness, smelling and tasting problems and I could not eat anything. I’m only drinking lots of water and tea with lemon. And other hand I was turbozing myself C and D3 vitamin, Zinc and CBD oil and fruits.
So I’m building up myself almost 3 weeks.
Where I am live the vaccine for Covid is not mandatory and I know that is nowhere.
But here honestly almost mandatory the vaccinating! It seems that at workplaces will request the vaccination card. So without this maybe I will be disadvanteges.
Here now cannot go the common places (spa, wellness, gym, theatre, cinema etc…) if you don’t have vaccine card.
I’m only worried and hesitating for vaccination due to my Lyme disease. But I think If I would like to my job no other chance.
I cannot how will reacting my immune system for this. My unluckyly body is fightening with this stupid illness almost 19 years and now quite busy because the LD is brougth some other problems with itself (hormone, endocrin system problem etc…)
Could you advise or share anybody the experiences which type of vaccine is possible “good” or “much better” for Lyme disease?
Now here is available: Moderna, Pfizer, AstraZeneca, Sputnik-V, Sinopharm.
Honestly I’m a little bit clueless…
Thanks to everybody!
Becca Claire
05/05/2021 (8:54 pm)
Thank you for posting, Lisa, and to all of y’all sharing experience. I got sick in 1999. Unable to walk, seizures, uncontrollable involuntary movements, light sensitivity & overall sensitivity. Was misdiagnosed until 2004 by which time I was in a wheelchair, needed supplemental o2. Finally tested and saw LLD. Treated w/ abx, supplements, energy work, and hyperbaric o2 chamber which I think helped turn the tide. Basically and invalid until 2009. 80 % better. Some symptoms linger, but I have my life mostly back. Deep intuition tells me to not get shots or the vaccine. LLD says wait and see. Environmental functional MD says NO, period. I live solo in a gorgeous nature sanctuary &enjoy a life of solitude for the most part.. I would like to chat with others who have decided not to get shots or vaccine. I send good wishes to all of y’all and hope to be in touch. Grateful to have survived and to be walking, talking, and using my mind. Love, Becca Claire
David E Birren
08/10/2021 (2:35 pm)
Hi Becca,
Like you, I live a solitary life. I see people when I go to the grocery store, pharmacy, and my son’s house (all vaccinated there). Otherwise, I’m a hermit. I’ve been suffering from Lyme symptoms for six years, triggered by an immune-suppressing drug I was given during a-fib surgery. Symptom were severe – extreme fatigue and dizziness, among other things – and then moderated after the first year. Having found a (barely) tolerable level of symptoms, I’m terrified of my immune system being upset again. So I get what you’re saying. My gut says to continue as I’ve been doing. My head – and everyone I communicate with – says get vaccinated. Supposedly people with chronic Lyme (called PTLDS) have a somewhat better response to the Moderna and Pfizer vaccines. I’m not persuaded, and apparently neither are you. This is tough, isn’t it?
Amy
04/29/2021 (4:49 pm)
I’m experiencing this as well. Have been in remission for Lyme and since my 2nd moderna , seem to be having a relapse. Has anyone seen improvement since their vaccine induced flare-up?
Melissa
11/24/2021 (12:04 am)
Are you feeling better since this post
Etienne
04/28/2021 (5:59 pm)
Really interesting stuff in here.
To share my experience, I have had chronic Lyme for about 18 months and started treatment with an LLD a year ago. Went from being a marathon runner to not being able to do much, groceries included. Main symptoms being fatigue, brain fog and joint pain. Lyme was confirmed through a Western Blot test.
3 months ago I started to feel better and better, regaining some energy and starting light workouts (biking…). I got my first Pfizer shot 6 weeks ago since I was terrified of getting Covid with my low WBCs. I was ok for 2+ weeks, them all of a sudden got extreme fatigue – like the flu but without symptoms. Had to take naps and could barely work. I got my second shot two weeks ago; the fatigue and brain fog are still pretty strong. My LLD (who recommended that I take the vaccine) thinks this is likely vaccine-related.
Hopefully this is a temporary thing but I do feel like the vaccine has reactivated Lyme. I’m going on a strong regimen of herbal treatment, diet and detox to try to contain it.
No regret taking the vaccine but I didn’t foresee that. Hopefully it doesn’t last too long.
Meredith
04/29/2021 (5:42 pm)
I would caution Lyme patients to think carefully (and talk with their doctors) before getting the covid-19 vaccine. I wish I had NOT gotten the vaccine. My Lyme/babesia/bartonella symptoms have largely been in remission for the past two years; but, unfortunately, ALL of my symptoms came RAGING BACK after the Johnson and Johnson vaccine this month, and I cannot seem to find any relief. Now I suspect that I’ll begin the long, arduous climb back to remission ALL OVER AGAIN.
I understand that covid-19 is a dangerous disease, so the vaccine might be necessary for some. I simply encourage every Lyme patient to proceed with caution!
Nicole
05/01/2021 (9:06 pm)
merrideth me too but wasn’t diagnosed.. what are symptoms
Hugh
05/21/2021 (5:06 pm)
Hello Meredith
I have chronic Lyme for a long time now over 20 years. A month ago I got the Johnson & Johnson vaccine and have a lot more exhaustion and flue like feeling since. No fun. I hope it starts to wear off after a while. I feel like I should have researched it more before I took it.