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.
Jackie
04/25/2021 (10:46 am)
Wow, I am really glad I found this forum. I have been suffering from a mysterious illness for the past 7 years. I am now in my 30’s. Previously I was healthy other than having IBD. Prior to my mysterious symptoms starting I was on a high dose prednisone for my IBD. I was camping in upstate New York and pulled 2 nymph ticks out from the back of my head. At the time I didn’t think anything of it and I didn’t develop symptoms until 2 months later, after a minor car accident. I have been to countless specialists (multiple PCP’s, ENT, neuro, ophthalmologist, neuro-ophthalmologist, rheumatoid, infectious disease, etc) and none could find a definite diagnosis. Three of these doctors stated that I had neurological Lyme disease but without a positive ELISA or Western Blot I have been denied treatment. My symptoms were mostly neurological with fatigue and exercise intolerance. I took matters into my own hands and was able to pull myself into a functioning level with supplements. I decided to get the Pfizer vaccine since I work in healthcare and felt very pressured. A few days after receiving the first dose I was hit with a violent episode of vertigo. It’s been a month since my attack and I have been dealing with constant dizziness, tinnitus, balance issues, aural fullness, and just feeling incredibly unwell. I have been seeing physical therapy and ENT which I’m sure will pawn me off to neuro. I’m not blaming it solely on the vaccine but vaccines in general are known to trigger an immune response. I was doing pretty well for the past 2 years and now I am fighting to keep my job. It’s unfortunate that clinical trials were only done on healthy controls. I am trying to remain positive that these symptoms will eventually dissipate. If I could do it allover again I would have never risked getting the vaccine knowing my history. Thank you for listening to my story.
Ely
04/26/2021 (3:23 pm)
Don’t know if the controversy of Lyme by the CDC is still going on. You need to find a Lyme literate doc. in your area, regular docs even specialist don’t get it. My advise is a Lyme lierate doc. I also got biomagnetic theray , conventional and alternative treatments x a year and beat it. Best of luck. Do lots of research and get info from fellow lymees.
Jackie
04/29/2021 (9:11 pm)
Thank you, I appreciate your advice. It has been a long, exhausting and expensive struggle. Just when you think you are getting better, something knocks you back down.
Tina Rhode
04/27/2021 (10:44 am)
I have posted before, I had the first Pfizer shot one month ago, and have had a big flare up of symptoms, especially my eyes, behind my knees more swollen than ever before, fatigue and shortness of breath-my main treatmnet has been energy work and traditional chinese medicine. I had an IgG antibody test this week (4weeks after shot) and it came out negative for antibodies to Covid. I have read that the testing is controversial? Does anyone have any ideas on this? If it is controversial, I do not understand how there can be a vaccine given to everyone and no way to assess by testing its effectiveness? Thanks.
Jackie
04/29/2021 (9:29 pm)
The first Pfizer shot offers 80% immunity to COVID. It is still possible that you did not develop antibodies after the first shot. A small amount of people do not develop antibodies to vaccines due to their immune system. Taking immunosuppressants can also alter the immune system’s ability to generate antibodies. I think there is still a lot unknown. I also saw that the COVID vaccines only offer protection from COVID for up to 6 months.
Ely
04/24/2021 (7:02 pm)
Had lyme 8 years ago. After a year treatment with specialist and magnet therapy beat it with very few symptoms left if I followed a clean diet.
Thought very hard about getting the Covid vaccine. My doc advised me to be careful.
Got the 1 dose of Pfizer vaccine 2 weeks ago. Only very mild symptoms x 1 day.
Today is been 2 weeks since. Since 2 days ago I’been feeling under the weather so I went to get tested x covid yesterday. My result today was negative (going back tomorrow for another one) Last night felt achy, some sore throat that went away, se sensitive to light, light anoying head ache. I’m in bed all day today. No fever, Motrin helps some only. Going back to retest. Can’t put my finger on anything yet 🤷🏼♀️
Ely
04/26/2021 (3:17 pm)
Update: April 25th.
My covid test was negative 3 days ago. Chills and sore throat have gone away for 2 days, mild annoying migrane with sensitivity to light still here for 5 days now. Getting a last test today to make sure I didnt get a false negative result. Hope migrane goes away.
Cindy Souder
04/22/2021 (10:04 am)
I found a tick on me two days ago. Yesterday it was itching a lot. Today has the definite bullseye and itching terribly. I am going to the doctor today my question is if it is limes or if I start antibiotics today should I go through with my scheduled 1st Madonna shot tomorrow?
Dr. Daniel Cameron
04/22/2021 (1:31 pm)
I would typically focus on Lyme disease first. It would be hard to tell if you would get the immunity you are hoping for while being treated for Lyme disease. You will need to work it out with your doctor,
Bea Garth
04/17/2021 (9:03 pm)
I have had Lyme Disease twice, though both times were years ago. I have struggled with it resurfacing if my immune system gets really challenged. This is happening again after getting my second Moderna jab for covid19. Initial reaction was awful first two or three days. But then tired unable to focus, sleepy, feeling like all my energy is sapped, increased itchiness, occasional bouts of sweating while at rest. I finally figured out now that its been nearly three weeks that the shot got my old Lyme disease out of remission. OK rather slow to catch on. I have started taking more of my anti Lyme and anti Candida herbs and follow my anti Lyme and Anti Candida diet even more earnestly, plus make sure I sleep more and it is helping. It actually makes sense it would re-stimulate the Lyme disease out of dormancy. Nevertheless I am glad I got the second shot since I don’t want to live in a bubble. Nor do I want to chance getting one of those nasty variants. I think with my diet and herbs plus food grade bentonite and diatomaceous earth I can counteract this again. By now am allergic to most antibiotics and have a host of food sensitivities, so hospitalization is not something I would ever take lightly. I had what I think was Covid19 in late December 2019-plus my husband, co workers etc. After I had gone to an art festival all day with a bunch of mainland Chinese. Of course they didn’t know they were carriers either. No one knew. I treated myself with herbs and diet, steam etc–it took two months before I got over the pneumonia. A friend of mine almost died and had to go to the hospital for an unknown virus. He is still not 100% even though its been well over a year. He gets all kinds of treatments from the hospital for his heart and lungs etc. But now finally doesn’t need as much now. So I think one needs to treat this potential disease with kid gloves. I am having issues but I am dealing with it and feel confident I will overcome my current status. Its not near as bad as the original Lyme Disease or Covid19. And yes my brother with Downs Syndrome died of Covid19–yet another reason I want to avoid going into a hospital to treat this bug if at all possible. Science shows No one dies or has to go to the hospital for Covid19 after receiving these antiviral shots. It may be frustrating and way uncomfortable, but I think its worth it.
Donna Brooks
04/08/2021 (12:12 pm)
I am 65 and had Lyme disease almost 4 years ago. I was never so sick in my life. I couldn’t get my fever down below 102 1/2, I could not breath, going up flight if stairs and I was gasping for breath. Sitting outdoors in the sun a d I was gasping for my breath. My doctor diagnosed me with bronchitis and gave me a Z-Pack which did absolutely nothing and an inhaler for my breathing. I started to do some research a wow I realized I had every symptom for Lyme disease. We live in an area in NJ that is heavily invaded with deer. I was gardening in my back yard in early May and must have been bitten by the tick. I will tell you that I did eventually find the tick burrowed behind my right knee where it bends but I never developed a bullseye. I did develop a rash around my wrists which my doctor said was poison ivy I must have gotten from my back yard. The Z-PAC did not help and I was not feeling any better. I am a very active woman and by 1pm everyday I was on my couch wrapped in a blanket trying to get my fever to go down. After doh f some research on my own I realized I had every symptom of Lyme Disease and I I went back to my family doctor and asked him to do a Lyme test, to which he answered me “you did not have Lyme disease”. That was on a Friday and Monday morning my doctor called to tell me I did indeed have Lyme Disease and immediately started on the doxycycline. Almost 4 years later I still have brain fog at times (my kids have no patience for me, lol), I have a constant ringing in my ears and I have to ask everyone to repeat themselves if they are talking to me from behind as their voices sound muffled to me. But my biggest long term side effect from Lyme Disease is Leaky Gut Syndrome. Tick borne infections such as Bartonella and Babesia can directly affect any organ system in the body including your gastrointestinal tract. 80% of your immune system is located around your digestive track so digestive health influences the immune system. Gastro symptoms of Lyme disease range from food intolerances to constipation which I have both. I suffer from severe bloating and abdominal pain after eating. . My infectious disease doctor and gastrointestinal doctor both suggested vitamins, supplements and a prescription to help move the bowels, a change in my diet and some gods old fashion exercise. Yoga Pilates and barre workouts are my go to and all 3 help with muscle and joint pains I also have from the Lyme Disease. I now have my Lyme Disease under control but the bloating and stomach pain are still is a constant when I eat the wrong food. I am so afraid to get the Covid 19 vaccine and I am scheduled to get my first dose of Pfizer on April 14. The thought of my immune system going crazy or my Lyme disease becoming activated again scares me. I take Vitamin C, Zinc, and D3 all which have been recommended to boost your immune system to reduce your chance of contacting Covid 19. I have been exposed to Covid 3 times and all 3 times I tested negative. Most recently in Feb my daughter and granddaughter were exposed to Covid and my grand daughter tested positive and my daughter tested negative. I babysat my granddaughter the day before my daughter was contacted. I was hugging and kissing my granddaughter for hours and when my daughter called me the next day to inform me she and her daughter were exposed to Covid she suggested I get tested also. I waited a couple days to get tested and when my test results came back I was negative for Covid. My daughters husband started feeling ill after a couple days after my granddaughter tested positive and he went to get tested for Covid and tested positive. With being exposed 3 times to Covid and testing negative all 3 times I feel the D3, Vitamin C and Zinc are doing there job and the fear of the side effect of the Covid vaccine in conjunction with still suffering from long term issues from the Lyme disease is why I am afraid to get the Covid 19 vaccine. After reading all the comments above, I am almost 99% sure I am going to cancel my Covid 19 vaccine. Thank you to everyone for your comments, they are very helpful for the Lyme Disease population that is looking for some guidance to getting the Covid 19 vaccine.
Cathy
04/09/2021 (8:30 am)
I wrote here about my experience with first shot and feel I should update as to second shot
First shot I felt GREAT .. like pre Lyme great for 4 days and then was tired , headache and nauseous for a week like a low grade herx
My acupuncturist who is a PhD microbiologist /immunologist believes that the vaccine also recognizes other virus fragments and “ cleans them up”… so that those days after we’re like detox reaction days bc my body was tired
I got my second Moderna yesterday
No real reaction.. my temp only has gone up 1/2 a degree.. my arm is less sore than first shot and nothing else… but I will keep an eye out in the next few days
I also believe that some reactions listed in this forum are not as a result of Lyme but of this from a site re vax reactions 👇🏼
“In the Moderna Clinical trial, 16% of vaccinated people had symptoms of new or worsening joint pain after the first shot. While 45% were more likely after the 2nd shot. 23% of people vaccinated were more likely to have new or worsening muscle pain (not at the sight of the shot) after the first shot. And 61% were more likely after the 2nd shot.
Systemic worsening in symptoms after the vaccine was more likely to happen in those < 65 years of age in both trials.”
Having said this , each persons body is different and age , sex , additional underlying conditions , environmental toxic burden have a role
Will update … I’m glad I did it .. it was a VERY difficult decision , but I know what would happen if I got it given my age . (71 today!!)… and the B117/P1 variants are like wildfire
Good luck to you all . Honestly, after I read some posts here , I was considering NOT doing it . Glad I did listen to my gut and weigh the risk/benefits and got it .
BTW.. I have fought AND survived late diagnosed Lyme for 11 years .. two bites /infections
tina osberg
04/10/2021 (6:23 pm)
It is great that you did not have a bad reaction, but that does not negate the experiences of people who are having a bad reaction, such as myself. I think we all know that many people without Lyme have reactions, especially to the second shot, and especially the Moderna, which typically last a day or two. Two weeks ago I had the first Pfizer and I am still sick, my knees are very swollen,(front and back) my eyes really hurt, I have extreme fatigue and more numbness and more shooting pains than usual. I took a chance. No one knows the intermingling of the vaccine with lyme and the mechanisims involved. My husband, age 65, who is healthy and no lyme had both shots with absolutely no symptoms. As you did note, each person is different, most especially with such a very difficult disease.
Tammy
05/01/2021 (11:33 pm)
I’m glad you did well with it. Older people have less side effects to the vaccine than younger because of weaker immune systems. Women also have much, MUCH more side effects than men, mainly because most of the test subjects were men. You can’t test male majority and deem it safe for everyone. I can’t believe in this day and age this still goes on. We are different!
Michelle A Statham
04/09/2021 (7:50 pm)
I am waiting it out for now I am in Texas where Lyme disease is considered not real and as the vaccines were only tested on well people I am really concerned about getting any with Lyme disease.