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.
NR
07/13/2021 (4:14 am)
Dr Cameron,
Or, if anyone here participated in the Novovax trials…
Any thoughts on whether Novovax might be tolerated better? Is the spike protein causing the adverse side effects, or is it the mechanism (mRNA, Adenovirus/DNA delivery).
Thanks!
Kimberly Delgado
09/03/2021 (1:18 am)
This is a great question with all the pressure to get vaccinated. Is this a safer
Option for us who had their immune system affected due to Lyme disease?
Carmen Seidelmeier
11/24/2021 (7:04 am)
I have been vaccinated with Pfitzer, after the second vaccination my Lyme got very bad and I am still on antibiotics and Cowden protocol as well as Immoglbine G Infusion. Now the government in my country made it mandatory to get the booster shot. Shall I got the booster shot while the Lyme treatment?
Carolyn Glassford Ames
07/05/2021 (3:44 pm)
I had three TBDs for 23 years before finally receiving a diagnosis and treatment in 2018 in New York State (I’m in Ontario). In 1995, I had two expanding bullseye rashes one on the right thigh with a pus filled hole in it and the other opposite on the left thigh. Despite showing all of the classic symptoms of Borrelia, Bartonella and babesia, I was repeatedly refused a diagnosis or treatment. My health never recovered and I was off work for 2.5 years, supposedly with Rheumatoid Arthritis. Through the years I had many strange symptoms that every MD I saw either said I was fine or alternatively to see a psychiatrist. I’ve now been in treatment (including antibiotics) for 3.5 years and showed remarkable improvement to about 60% of my pre Lyme self.
I now am under the care of one of the few LLMDs in Canada, and was advised to not take any of the vaccines. I did a lot of research and carefully considered her advice but in the end decided that since I’d never had a bad reaction to any vaccine before and because COVID19 represented the greater threat, I received the Moderna mRNA vaccine on 23 April 21.
Within 4 hours, I had a huge inflammatory reaction, including but not limited to, a fever of 38.5C, nausea, vomiting, sweating, dizziness, balance issues way beyond what I have experienced with TBDs, a significant drop in cognition, bloody diarrhea, severe pain throughout my body (which felt like one big angry nerve, with my brain on fire) but the biggest worry for me was my pounding heart, arrhythmia for the first time ever, and heart/chest pain so intense, I had difficulty breathing. It felt like someone was pressing down hard on my chest. It was impossible for me to bend over or even be vertical for more than a few minutes.
I stubbornly did not go to ER as I figured it would pass in a few days. But it didn’t. Two and a half months later, my inflammatory symptoms have eased, my chest pain is ever present, but not as severe, loss of taste and increased sensitivity to smell are still with me, this despite being diagnosed and treated for arrhythmia and pericarditis. My LLMD also put me on Ivermectin, which certainly reduced the intensity. I have not vomited for over a week, still zero appetite, cranial nerve pain that starts at the back of my head, follows around the left side of my head into my left ear, eye, jaw and lower left teeth, comes and goes now, like my arthritic pain (which I had not experienced for several years) and my intermittent low grade fever. My balance has recently started to improve. To drop from 60% improvement to 30% starting four hours after the jab and still not be able to exert myself in any way, is a disheartening experience, to say the least. I’m still waiting to have more cardiac testing done to determine if there’s more at play than pericarditis. I’m offended when people hear my story and call me an anti-vaxer . I grew up with two MDs and a chemist, so am most certainly not against vaccines. Having said all of this, the fact that the CDC has only looked at heart inflammation in young people, is totally missing the point. You can’t just assume that all of us who have had similar reactions but are not under 30 are not worth looking at. There is definitely a pattern of inflammatory reactions, including of the heart amongst some of us with late disseminated TBDs. It’s quite possible there is more at play here, such as genetics, damage already done as a result of untreated TBDs, perhaps including even those with chronic inflammatory responses. I’m a patient, not a virologist, microbiologist, or an ID MD, but I know what happened to me was a direct result of the mRNA vaccine. Hoping this might help inform the usually biased coverage whenever the word Lyme comes up. Thank you for your time.
Eric
07/12/2021 (4:41 pm)
So sorry to hear about your awful reaction to the vaccines. I’ve been a long term PTLDS sufferer and have been on medication including a years worth of Rocephin IV. My wife and I decided to wait until Novavax came out before taking any of the vaccines. We have wanted to “cave in” just so we could see family and friends again but have held firm to waiting for Novavax which seems very promising to Lyme Disease patients.
After 2 months of writing letters to the CDC and the FDA I did finally get a call from the FDA about the vaccines and how it relates to Lyme disease patients. I will not give the name of the woman at the FDA who called me but she spent over 45 minutes with my wife and myself going over our symptoms and she stated that we were absolutely correct in “waiting until Novavax is approved” to get vaccinated … that the mRNA vaccine may very well exacerbate all of our worst conditions and that anyone with severe Brain Fog and neurological symptoms (including MS/CFS/Parkinsons/Alzheimers) could see their condition suddenly and very rapildly “Fast forward” into an untreatable condition. The woman at the FDA was also quite surprised that doctors have pushed the vaccine on patients with auto-immune and neurologic disorders when she said it is plainly stated that these people should not be vaccinated. This is right from the FDA folks… so I’m not saying don’t get inoculated. I don’t want to see anyone fall prey to this terrible virus. However… we are going to remain double-masked (with N-95) at all times when we leave the house until Novavax gets an EUA.
The Novavax which also serves as a Malaria vaccine is very promising to Lyme patients as we are probably all on anti-malarials … we are on several. So its possible the Novavax could have a very positive effect.
We’ve sent a lot of messages to Novavax pleading for them to apply for an EUA but they just keep pushing it off and we don’t understand why. The people who need it most are so very vulnerable right now.
Novavax has not replied to us at all. The woman at the FDA did say she did not think that they would turn down an EUA if Novavax applied for one. So this is actually all on Novavax right now. They seem to be playing a money game with the only safe vaccine for the rest of us here playing russian roulette everytime we leave the house.
Sarah
08/11/2021 (10:44 am)
Have you been able to find any literature or research to support/demonstrate this? I would really like to present this to my doctor and have a discussion. I had a terrible response to the vaccine personally and have been doing extensive searches but haven’t been able to come up with much. Thank you!
Dr. Daniel Cameron
08/11/2021 (10:58 am)
I have not seen any more than anecdotal stories and through my patients. I launched a survey to contribute to the literature to help you and your doctor work through the risks and benefits. I would most appreciate it if you could complete the survey at https://danielcameronmd.com/lyme-disease-covid-survey/ to share your experience and concerns. It would also be helpful if you would encourage anyone you know to complete the survey.
Elisabeth Beaulieu
06/22/2022 (7:54 am)
I have been Very ill since October 2019 after an insect bite in Florida. I didn’t know what was happening at the time so 4 months lapses and I ended up not working for 3 months from March to may 2020 with flu like symptoms, feeling ill overall, pain and aches. I had the Ana test and antibody and they came back doubtful but not conclusive. I ended up going back to work for a year with some small relapses here and there but nothing major. In July 2021 I started feeling really Ill (I had the first Pfizer vaccine in late April 2021 against my will and we were being forced to in order to keep our jobs) I had colitis for 10 years and was on immunosuppressants so they said it was a drug induced lupus (redid the Ana and antibody and it was positive) I had to ask to be seen by all sorts of specialists and they would practically all tell me there is nothing wrong. I asked for Lyme disease test which came back negative but I know I started feeling ill one month after a bite from something which gave me a big round spot on leg (not bulls eye) but after the vaccine everything came back and with dizziness, vibrations across my entire body, my left side of the head and ear always vibrating and feeling pressure. Symptoms were more persistent and worsened. I developed tinitus as I also took planquenil as they thought it was drug induced lupus and made me stop the immunosuppressants for colitis. I had to cancel trips, camping, shows basically my life was falling apart and being a single mom was so hard having my son seeing me that way for so long. I was off for 6 months. They still never figured out what was wrong. I went to emergency in December 2020 as the dizziness and head vibrations were so bad I thought I was going to pass out. They said I had sinus infection. I had received the 2nd dose of pfeizer in October and coincidentally 2 months later just like the first time, I felt even worse. I had worse tinnitus and all the brain / nervous system symptoms worsened. I started having anxiety attacks which were not something I had before. All this combined was and continues to be a painful struggle and discouraging. I went back to work slowly managing head spells when I needed to which was daily. I was seen by an llmd as well and tried many different things to remove the symptoms as there was also a thought that mould may have contributed on top of the insect bite and vaccines. I saw an nose ears throat specialist who doesn’t see any thing . I did one mri last year and 2 head scans in the past 2 weeks . First one at emergency as I couldn’t deal with the head vibrations and pressure. They didn’t see anything. They put me on anti anxiety pills which felt as though activated aches and pains in joints, tendons, muscles and overall pain I could barely walk. So I stopped them. No one wanted to refer me to a rheumatologist in all these years. My family doctor who just retuned from
Mat leave read my file and a few weeks ago called me as she could see I was in agony and unable to manage things or how I felt inside. She agreed to put me on antibiotics for Lyme or other tick/insect Bourne infections but we are almost 3 years from the original bite. I’ve been taking them for 8 days now. I don’t know that I’m seeing a difference other than the pressure in my head moving around but it’s still there more on my left side. I feel like I’m losing my mind, I can’t stand my body and my insides as well as my cognitive senses are all over making me feel as though I don’t recognize myself. I no longer know what to do anymore as I feel very sick and unsupported as no one seems to know what’s wrong. It’s been worsening in last few days where joint and muscle pain has returned so was probably not related to the anxiety pills. I am having 3-4 big attacks weekly where I’ve been taking Ativan. I am despaired as I feel I’m losing my mind and that everything inside me is shutting down. I had some good days but they are very few and far between and these last few have been the worst as my brain and insides are bothering me so much I don’t know what to do. I’ve gone to emergency twice in past two weeks where symptoms weren’t this bad and they didn’t do much other than ct scan and prescribe anxiety pills. I’m not well and don’t know where to turn anymore
Judi
09/12/2021 (8:52 pm)
Wow… have Lyme and suffered with it fior close the 40 years! You just gave me the info I need to make my decision….. which was my gut feeling all along ! I hope your side effects improve. Lyme is bad enough! Nobody needs to add more pain to an already exasperated condition.
James
09/24/2021 (11:58 pm)
I wouldn’t make a decision based on an anonymous, anecdotal comment on a blog.
Dr. Daniel Cameron
09/25/2021 (9:02 am)
I am hoping my Lyme disease and COVID-19 survey will help with this important decision making process rather than having to rely on anecdotal comments. For now, that is all we have. The enrollment has been great. I still need volunteers to complete the form even if someone with Lyme disease is not sick now or ever had COVID-19 or taken the vaccine. Here is the link. https://danielcameronmd.com/lyme-disease-covid-survey/
Stephanie Allen
06/29/2021 (6:32 pm)
Does anyone have experience with the J and J vaccine? I am scheduled to get it next week and an extremely fearful of it reactivating Lyme and Bartonella symptoms that I have struggled to get under control for over 20 years. Any advice for or against getting it would be greatly appreciated. As much as I love you Dr Cameron, you saved my life once, I do not want to have to become a patient again and you have to save it again!!! 😃
Amy Schroeder
09/09/2021 (7:59 pm)
Sadly I got the j&j and within 2 days I was sick and I hadn’t ever had. Bullseye when I had LD when I ws pregnant 12 years earlier and now I was laying in a hospital bed thinking I am having a stroke begging for to be tested for lymes and sure enough it was positive where it wasn’t before. Here we are 5 months later and rounds of treatment later and magically its still positive and I am miserable with 2-3 migraines per week. Bodys always sore and I am always exhausted. I wouldn’t Go this route. ID drs at Mayo were a waste in my opinion and literally am in tears as I type this looking for help to feel better.
Anita
06/20/2021 (8:50 am)
I have Lyme 20 years before knowing, I had seizures and a lot of the normal stuff, I got Covid I went to bed and couldn’t breathe I have a fit bit, blood oxygen dropped to 80 that night. Months later I had what felt like a heartache. Walk across the room pulse would go up to 134.
So with that experience I got the vaccine. (I’m able to work before vaccinations, I was doing best in years) then shot 1 flared up lyme never felt good go the second one had a mini seizure felt bad for like 4 weeks. Now I feel better then before the shot.
A large kill off usual is called herx. Your body is overly toxins from dead lyme.
My experience
Steven Hanson
06/07/2021 (9:05 pm)
I was diagnosed with Lyme after 5 years of doctoring. That was in 2018. It took two years to get it under control, suppressed but not cured. I don’t have access to a Lyme literate dr where I live and my Lyme doctor wouldn’t see me due to coronavirus travel restrictions… I did a quick search “is moderna safe if you have Lyme” short answer, yep. I get the shot within two days my Lyme has flared up and is shutting me down again… So after a couple weeks I search “Moderna Lyme complications” and that’s where I should have started. This sucks, I thought I had it under control. Our Canadian government says it is safe, I told the nurse I have Lyme and they gave me the shot with no hesitation. I understand the need to get vaccinated but I’d rather get covid again instead of Lyme. I won’t be getting the second shot.
E-LIZ PS
06/25/2021 (3:54 pm)
Awesome Steven .. I’m right there with you friend. 14 yrs neuro late stage Lyme and only self treatment with bees cannibis and natural remedies.. I’ve made it this far but try my hardest to stay on top of it though seems I’m living through a Holocaust. I try to live without a lot of mention. And even now for myself on a wild rampage to decide but I’m sticking to my guns … Thank you for your wisdom and truth 🦋☠️🔥🐕🦺🥺 GODSPEEDS you on this hell of a journey
Daniel
10/25/2021 (12:22 pm)
My husband has Lyme for 20 years. He’s 46. Had the Pfizer vaccine 2 months ago. Within 5 days he collapsed on a golf course and tKen to hospital . He’s been a healthy fit guy running for miles daily.
Now hes been told he’s got Myocarditis, he can’t run or exercise and has pain in his chest daily. The doctors won’t do any more and won’t go near him to advice anymore.
It’s devastating to see him going from a healthy guy running and doing sport to being in pain and no one can help. He hasn’t had his second vaccination.
We are upset about it all.