posted
Just curious about how the vaccine affects those of us with Lyme. Looking to hear the positive and negative experiences so I can make an informed decision
Which vaccine did you get? What were your symptoms if any and how long did they last? If you haven't gotten the vaccine, why not?
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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I was very nervous of it. You can ask ask my friends and family all last year and up to a few months ago I was petrified of getting it or thinking I'd be forced to at my job. 2 years ago I was injured by a vaccine that throw my Lyme and Co's from 0-60.
There were nights I literally wouldn't sleep because of this. Would I be discriminated against for not like traveling, going to a concert, a ballpark etc.
I started a new job 6 months ago which I absolutely love after being out of the workforce for so long from Lyme. I was afraid my hesitancy on vaccines would interfere with my job. I work in a hospital. My boss and coworkers have been so understanding!
I did my own research and talked to other people in the Lyme community who received one ( all 3 kinds) and other non/Lyme acquaintances who had autoimmune issues and they were all fine. My LLMD even said it was a good idea.
At the end of the day however it was MY decision and mine only. It should be yours too. It's your body. I refuse to get bullied into getting it or shamed for taking it either way. I did say summer the earliest I would start thinking about it.
I got the Phizer. I was fine and even cried after with relief and prayed so much right before that it wouldn't trigger something and make me sicker, or worse. I got my 1st dose on May 14th and my 2nd on June 4th. Both times minimal side effects.
The 2nd dose the sore arm lingered a bit longer but it was certainly tolerable. I had a bruise and a rash that now has disappeared (I was told this is normal happened to some of my coworkers and their family members).
I don't regret it, nope. 💚
Posts: 597 | From Massachusetts | Registered: Mar 2019
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I'm an old-timer around here, but have been in remission for over a decade after a decades long battle with LD & co-infections. I was nervous about the vaccine, but got it because I lost a family member to Covid 19 last year and have elderly parents.
My husband (also in remission with LD) and I both got Moderna because it was the first we could find. I had what they call the Moderna Flu symptoms with immune activation. He did also to a lesser degree. It was astonishing how all the worrisome symptoms shut off 48 hours after they started, as if someone turned off a faucet.
I would have preferred to get Pfizer because typically it seems to have fewer side effects in autoimmune patients based on what medical professionals have told friends, including one with severe MS. She had both her Pfizer without setback.
It is so nice to get back to living normally. I still shop with a mask on and wear a mask when working with transport or the clinics that do vetting. With close friends who have been vaccinated, I don't worry about it unless they have symptoms of colds or flu.
Posts: 487 | From USA | Registered: Feb 2002
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I went with the Moderna vaccine because it was the first one available to me.
I checked with LLMDs, and the one thing that stood out is that there may be a set back with the vaccine, but that's nothing compared to getting Covid-19
A friend who works in our local hospital, and so is in the middle of treating the pandemic, told me that even surviving it, it's far worse than the vast majority of those who have reactions to the vaccine.
This friend and I had decided not to get the vaccine right away. But by the time it was available, we both got it without hesitation.
People are still dying every day from this virus. Some of my healthy friends who got covid-19, and weren't sick enough to go to the hospital, are still noticing problems.
I also was reminded that LD causes the immune system to go into overdrive. So, getting the vaccine may cause reactions because the vaccine is effective.
I felt a little worse for a few days--fatigue, body aches and headaches. It wasn't anything I'm not used to. I even wondered if it was just me, and not the vaccine causing it.
We don't know if problems will show up down the road with the vaccine. But, we do know that this virus has killed many.
I respect the decision that a person makes about getting the vaccine, or not, because they know their own situation the best. They also will be the one who lives with their decision.
I'm glad I got vaccinated.
Posts: 559 | From New Mexico, USA | Registered: May 2007
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I got the Moderna. My LLMD said not to get it but I had to. I catch everything, like most everyone here, because my immune system is shot.
My IgM is very low and in 2019 I caught the flu twice, had four colds and mono. In 2020 nothing, because I stayed home and was extremely careful going out.
With the Moderna, after the first shot I had a sore arm. After the second, it was just like having a bad Lyme day. I hurt and was exhausted, it did not make my neuropathy act up.
It showed up after six hours and lasted about 12 and I just slept it off. It was no biggie.
Posts: 43 | From Grand Rapids, MI | Registered: Aug 2007
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I got Pfizer. I had 12 days of severe fatigue (which honestly I only linked it to the vaccine because it disappeared on day 12) and migraines after the first dose, then about a month of fatigue and headaches (but only when exercising) after the second dose.
LLMD said they were here for me for Lyme flare, and would prefer that (the devil we know...) to me getting covid. At the time I was working in a high risk job.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
FYI: An informative review of people's personal experiences with Lyme and Covid "vaccine" reactions. Scroll down to blog section:
Also...people with Lyme can contribute to the information base by taking the survey on Dr. Cameron's website:
"You are invited to share your experience with Lyme disease if you are at least 12 years of age and if:
You have had COVID-19 You have had the COVID-19 vaccine You have had neither COVID-19 nor the COVID-19 vaccine Your experience will help others living with Lyme disease in a COVID-19 Pandemic."
Additional posts re personal experiences with Lyme and the "vaccine" can be found by scrolling down on the survey page.
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I know that it is a very difficult decision for those of us with a chronic illness like Lyme - especially when you have neurological symptoms, which I do. I was afraid initially, and after doing lots of research, I eventually decided to get vaccinated, because I was more fearful of catching Covid than the risks of being vaccinated.
I have had both the first two Pfizer vaccines and recently got the booster. I had a low grade fever, pain at the injection sight, and mild flu-like symptoms the day after the booster. But the day after that, I felt back to myself. It was similar with the first two shots.
I feel very fortunate that my body handled the vaccine the way it was supposed to. I had some Lyme symptoms that have not changed following the vaccine. I have entered my information in Dr. Daniel Cameron's survey.
There is another big data pool (MyLymeData) that you can enter your information in for those suffering from lyme and getting Covid or the vaccine. So far it appears to show that those with chronic lyme are at no more risk than others in the general population to be vaccinated. This is very encouraging!
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The
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