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.
Tammy
03/14/2021 (11:51 am)
I’m getting my first vaccine in 3 days. Would it be good to start my Lyme protocol again as a precaution? Dr Buhner’s based tincture, etc? I’m so afraid but more afraid of getting Covid. Thank you.
Dr. Daniel Cameron
03/15/2021 (2:10 pm)
I am not sure what I would tell my patient with the same question. I would point out that it would be difficult to determine whether a symptom is a Herxheimer reaction from the protocol or a COVID-19 vaccine problem.
Tammy
03/15/2021 (4:31 pm)
Today I was thinking the same thing about herxing. I decided against it. Thank you.
Tammy
03/18/2021 (4:04 pm)
I just wanted to drop in and say that it’s been over 24 hours since I had my first shot of Moderma. I feel fine and ironically, it’s the first day I haven’t had a headache in a very long time. My arm is a little sore and I’m sleepy. A different tired than Lyme tired but that’s it. I am dreading that second shot but I’m going for it.
Cathy
03/19/2021 (7:51 pm)
Same here
I actually felt amazing… better energy and no mild headaches ( better than pre Lyme 10 yrs ago() for days 2-3.. then felt fatigue 4-7 and today feeling better
I am still nervous about dose 2of this Moderna
But I live in Florida where there are a lot of variants and no mask order … and I am a type A blood which have a worse outcome if we get it … as do people with EBV ..( new research u can fund in Google .. the connection w bad outcome of Covid and presence of EBV titres) . my titres are old but still high as many of us lymies
It’s a trade off, but I admit, I am nervous about it
Tammy
03/21/2021 (8:46 am)
Me again. I don’t know if this is Lyme related and have seen other women without having Lyme experiencing similar. I am a menopausal woman and yesterday (day 4 after receiving first dose of Moderna) I started bleeding like a light period. Still bleeding today and am very crampy. It has me concerned. I’ve been exhausted but sleeping much better than before the vaccine. I feel in more pain than usual and those darn daily headaches have returned.
Megan
03/22/2021 (1:54 pm)
Hi Tammy,
I’m wondering how you are doing? How interesting that it kick started your cycle. I just had a positive western blot in November and sort of thought it was false or should have been IgM but my initial fatigue and leg buzzing sensation symptoms increased to loads of weird neurological symptoms and now I am pretty sure I’m having active Lyme. I cannot decide about the vaccine and I feel so stuck. No access to J and J so I would have to go with another. I’m set to travel and see my family that I haven’t seen in two years, and I’m thinking maybe one dose would give me enough protection. Any more people have one dose reactions? (Should read IgG-can’t seem to go back and fix it)
Tammy
04/06/2021 (9:08 pm)
Hi Meagan. Thank you for asking about me. My post menopausal bleeding lasted about 4 days. Though Lyme makes me tired in general, I have to say I’ve been more exhausted since my first vaccine. I seem to be experiencing flares more frequently as well. I have been under a lot of stress and have heard that can trigger flares so who knows. I don’t bruise easily but have had a rather large dark bruise on my leg for a week that doesn’t seem to be fading which I found a bit odd and I don’t recall hurting myself. I am on the fence about getting my second vaccine. Mainly because of the bleeding. I saw where Israel is doing a study about this. I’m glad someone is.
Tammy
04/27/2021 (6:56 pm)
Hi. I thought I’d stop by and share this survey about those with Lyme receiving the Covid vaccines and how they did. https://www.lymedisease.org/covid-vax-lyme-survey-results/ As for me, I decided against getting my second Moderna vaccine. The post menopausal bleeding frightened me enough, especially after reading about women who have had worse. It’s been well over a month since my first vaccine and I’m still getting bruising on my legs but they’re not as deep in color. I’ve also been more exhausted than usual since the first vaccine and my pain has increased.
Dana Brenner
03/13/2021 (4:51 pm)
I had many long term tick borne illnesses and was successfully treated and in full remission enjoying life at the age of 51. I spent years trying to get them under control and finally found a doctor in Idaho who eradicated it all for me. I have had four years with my life back! My son has a rare genetic disorder that means his pulmonary/respiratory function is compromised. As a caretaker of a child like this, I was offered the Covid vaccine early. I was really on the fence. I had watched my doctor in Seattle lose his license for telling the truth and helping people. Like many, I don’t trust the CDC for very good reasons. But, in order to protect my son, I broke down and got the Pfizer shot series. It’s now about one month post-second shot. I’m deeply systemically ill. My liver is shot- with ALT numbers in the 200s. EBV, Hashimotos are back. Neuropathy, joint issues, I could go on….I’m as sick as I ever was. Cognitively I am ok this time, but the body is a mess. I’m trying to get back to Idaho to be treated but I can’t travel because I am so inflamed that I have terrible hemmeroids that keep me from being able to sit for more than a couple minutes and will require surgery. I honestly can’t say that I should or shouldn’t have had the shots. There are so many risks all around. But I can tell you that the vaccine deeply damaged my immune system, that I’m very scared, and that my son now has a mother who can’t care for him.
What will be even harder is determining whether to immunize HIM or not when the time comes. He was born with congenital l Lyme (treated), as well as the genetic condition. The mutated gene associated with his syndrome is CRELD1, and has been found to involved in the stabilization of the immune system. His father is adamant that he be vaccinated. We are divorced and I do not necessarily agree. I’m terrified that if he gets the vaccine, he will seize uncontrollably like others with more involved presentations and become in a vegetative state.
Karen A. Killeen
03/15/2021 (2:26 pm)
I’m sitting here after googling covid 19 vaccination (my first Pfizer last Wed 3/10) as I am dizzy, headache, exhausting fatigue, bouts of crying, muscle aches in my legs and joints have started. Last night I said aloud omg how could I have all these Lyme symptoms all over again. My chronic Lyme related tinnitus has escalated from its 3-4 to 7-8. I was first treated for Lyme in 2007,2010,2013 , and have done very well since then until last Thursday , 1 day after getting the first Pfizer shot it started and each day is increasing with last night’s crying bout and wipe out with headache. I realized I must be having a flare up? I retired in June 2020 from 40 years as a visiting nurse and Acupuncturist in Bronx NYC and was strong and healthy until this now happening to me since the vaccine. I should have thought of the Lyme before the vaccination, although I had unsuccessfully tried to find the J&J which I would have preferred but perhaps that would make no difference. By the way Dr Cameron was my LLD who successfully got me thru the hell of Lyme and I also used Stephen Buhner’s herbal protocol and Heiner Fruehauf’s herbal treatments.
I was thinking I need to call Dr Cameron today to ask him if I could be having a Lyme flare up and here is his article that came right up on Google. I am trying not to sink lower seeing that I am in trouble now and will need to do something to help my immune system. Thank you to everyone for posting here and for sharing and hope we all recover soon. Blessings to all of you.
Sheree Lines
04/09/2021 (6:57 pm)
Gosh, I don’t know what to do! My Lyme (2004- 2006) was ten times worse than my breast cancer (2009) but if I want to see my grandchildren in London, UK, I have to have a vaccine. We have Pfizer here with Astra Zeneca coming soon. I am terrified my Lyme will come back but chemo and a 9 hour double mastectomy didn’t bring it back? I could hold out until October because we just cancelled our April trip but my family really wants me to have it since our Island has high numbers now. I don’t think I could handle the knife pain throughout my body and weakness with Lyme symptoms ever again. I need to make sure that I never have to get that wheelchair. I am able to do Pilates and speed walk now! So torn!!
Sandy
03/26/2021 (6:06 pm)
Would you please give me the name of the doctor in Idaho that treated your Lyme disease.
Shelley Mack
03/28/2021 (8:53 pm)
I would like the name of the doctor in Idaho . I am working with someone in Oregon and I’ve gotten better but still lots of pain
Gina
04/11/2021 (2:45 pm)
Who was your doctor in Idaho?
Henry
03/11/2021 (12:24 pm)
I had the first of two moderna vaccines 9 days ago. I have had Lyme for 5 years, and my worse symptom is muscle and joint pain. I was OK for 2 or 3 days, then the pain started to increase significantly. I had a vitamin C drip and 2K shot of glutathione, and it got better but that only lasted a day or so. I am going back in for another drip in a couple of days. I am scared to get the 2nd vaccine, but also scared not to get it. :-/ I hate going backwards, but hopefully this won’t drag on for months and months.
Dr. Daniel Cameron
03/11/2021 (5:09 pm)
The pharmaceutical companies have recommended to not take the vaccine if there is an allergic reaction. I have not seen any advice regarding what to do when there is a flare-up. I would expect that it will be a tough decision as to whether to take a second dose.
Kelly Cicchino
03/10/2021 (8:12 am)
I have had “new” lyme diagnosis 5 times- different titers over the last 12 years. Yesterday’s recovery after 2nd moderna shot was all lyme feelings: achy, Fatigue, slow moving. This morning woke up energetic, more so than usual. I’m hopi g the vaccine shocked my system in some way. Hoping it continues. Good luck everyone!!
Gretchen
03/09/2021 (11:31 am)
I am slated to get the first shot of Moderna in a couple of days and am now have misgivings in that I tested positively for Babesiosis again 6 months after most likely having COVID-19 starting Feb 25, 2020. I tested negatively for antibodies to C19 in June but positively for Babesiosis again. The issues with thrombopecenia and the mRNA shots is freaking me out two days from shot time. What to do?!?! Husband got the J&J and now I am wondering if I should just wait and get that one instead. Officially exhausted with the entire situation. Thanks for any insight. I had red petichia when I was sick with COVID-19 and even prior at times.
Dr. Daniel Cameron
03/09/2021 (5:38 pm)
The Babesia antibody typically stays positive even if the infection is over. I base my treatment clinical presentation rather than the test. I have not reviewed information regarding the thrombocytopenia to answer your question.