This is Joe Keenan, author of Covid Long Haulers. In this edition of my blog, I will be sharing with you my experience in getting my first Maderna vaccine shot and its effect on my Long Covid symptoms.
For those of you that follow my blog and podcast, you will know that I have been ill with Long Covid symptoms for several months. As illustrated in my earlier posts, my Long Covid symptoms included brain fog, cough, headache, leg numbness and fatigue. These are very typical symptoms for those recovering from the virus. Treatment for my symptoms has varied but has included the use of thyroid medication, an Albuterol inhaler, steroids, increased supplement intake of vitamin C, D, Zinc, Fish Oil and Niacin. I have also been taking a hydration drink to help with my daily dehydration and muscles cramps. All of these medications, supplements and drinks have improved my overall percentage of normality to 85% to 90%. Functional but still not able well enough to return back to my normal routine.
Will the vaccine help me or make me worse?
This question has been on the mind of many Covid Long Haulers for months. For those that have survived Covid and come out of the infection with this long tail of debilitating symptoms, the last thing that they want to do is put themselves back into that position. Unfortunately, there is not a lot of data available to understand the benefit or impact of Long Haulers taking the vaccine in hopes of feeling better.
In a recent post, I introduced my followers to Gez Medinger a Kiwi born, U.K. film producer and long COVID patient. Gez published on YouTube the results of an informal survey of long COVID patients from various Facebook groups and the Slack group, another organization that has been tracking COVID long-haulers. Medinger’s survey had 473 responses which included 80% from the U.K. and 15% from the U.S. with 86% of participants being women. The majority of patients received Pfizer’s vaccine (60%), followed by AstraZeneca (30%) and Moderna (9%). The results showed that one week after their first dose, 9% of patients said their long COVID symptoms had improved, and by 2 weeks, 16% said their symptoms were much better. Those who had their vaccine 2 weeks ago or longer, 27% said their long COVID symptoms are slightly better, while just 14% said their symptoms were slightly worse. About 5% felt completely back to normal and only 3.8% felt much worse than previously.
“Taking the vaccine is more likely to completely resolve your symptoms than it is to make you feel much worse,” Medinger said. “It’s almost twice as likely to make you feel slightly better than slightly worse.”
So why are some Long Haulers feeling better after the vaccine?
The idea that the vaccine is giving Long Haulers relief from their symptoms is wonderful news. The informal study by Medinger gives hope to those that have suffered without many options. But to understand why the vaccine is helping some Long Haulers, we need the help of experts. In a recent article by NPR called, “Mysterious Ailment, Mysterious Relief”, they sited the following;
“There are several theories for why vaccines could help some patients — each relying on different physiological understandings of long COVID, which manifests in a variety of ways.
“The clear story is that long COVID isn’t just one issue,” says Dr. Eric Topol, director of the Scripps Research Translational Institute, which is also studying long COVID and the possible therapeutic effects of vaccination.
Some people have fast resting heart rates and intolerance to exercise. Others suffer primarily from cognitive problems, or some combination of symptoms like exhaustion, trouble sleeping and issues with smell and taste, he says.
As a result, it’s likely that different therapies will work better for some versions of long COVID than others, says Deeks, the UCSF professor.
One theory is that people who are infected never fully clear the coronavirus, and a viral “reservoir,” or fragments of the virus, persist in parts of the body and cause inflammation and long-term symptoms, says Iwasaki, the Yale immunologist.
According to that explanation, the vaccine might induce an immune response that gives the body extra firepower to beat back the residual infection.
“That would actually be the most straightforward way of getting rid of the disease because you’re getting rid of the source of inflammation,” Iwasaki says.
Griffin at Columbia Medical Center says this “viral persistence” idea is supported by what he’s seeing in his patients and hearing from other researchers and clinicians. He says patients seem to be improving after receiving any of the four different COVID vaccines, generally about “two weeks later when it looks like they’re having what would be an effective, protective response.”
Another possible reason that some patients improve comes from the understanding of long COVID as an autoimmune condition, in which the body’s immune cells end up damaging its own tissues.
A vaccine could hypothetically kick into gear the “innate immune system” and “dampen the symptoms,” but only temporarily, says Iwasaki, who has studied the role of harmful proteins, called autoantibodies, in COVID-19.
This self-destructive immune response happens in a subset of COVID-19 patients while they are ill, and the autoantibodies produced can circulate for months later. But it’s not yet clear how that may contribute to long COVID, says John Wherry, director of the Institute for Immunology at the University of Pennsylvania.
Another theory is that the infection has “miswired” the immune system in some other way and caused chronic inflammation, perhaps like chronic fatigue syndrome, Wherry says. In that scenario, the vaccination might somehow “reset” the immune system.”
Many theories from numerous experts point to reasons as to why the vaccine might help the symptoms of Long Haulers. As a Long Hauler myself, my interest is maybe more selfish.
Will I be one of the 30% of Long Covid suffers to get relief from the vaccine? Or will I get worse?
On March 24, 2021 a week ago today, I finally received my first Maderna Covid vaccine shot. I had tried several times over the previous month to get onto a list somewhere, but was faced with cancelations due to shortages. But just 10 days before my vaccine I landed an appointment at a pharmacy two hours from my home. My shot was to be delivered at the City Market Pharmacy, located in Canon City Colorado. A small but scenic town with great mountain views. I arrived 15 minutes prior to my appointment and found my way to the line for check in. The check in process was quick and easy and the team at the pharmacy was professional and courteous. Once checked in, those ready for vaccine were positioned outside of a locked door. One by one, all of the patrons were ushered into the room to receive their shots. Inside the door was a makeshift clinic that looks like it was used as a storage and office prior to being repurposed for the vaccine shots. in the adjacent room was the large freezers that contained the vaccine storage. The pharmacist administering the shot was very knowledgeable and efficient in her work. After the shot I was told to wait 15 minutes to see if there was a reaction. If not, I was free to leave. I did not have a reaction and so I was back on the road for home.
My post injection diary
For the past week, I have been tracking my post injection experience. The following log are brief notes that I captured to describe how I felt;
Injection plus one hour. I felt some stiffness in my injection arm but nothing severe and I felt some all over butterflies. All in all, I felt fine.
Injection plus six hours. My arm remained a bit stiff but no pain or redness at the injection site.
Injection plus twelve hours. My body was feeling stiff and I had developed a headache. There was still no redness or pain at the injection point.
Injection plus eighteen hours. I was feeling very fluish, with all over body aches and my injection arm was very sore to the touch. Rolling over on that arm while sleeping would wake me from the sharp sensation.
Injection plus twenty four hours. I was feeling very fatigued, my body ached a lot and my arm remained very sore. At this point, I decided to take two Advil and return to bed. I slept for a full six hours more.
Injection plus thirty hours. When I woke up from my sleep, my body aches were gone and I was feeling quite energetic. My arm was still tender but not sore any longer.
Since the second day after taking the first dose of the vaccine I have felt much better than I did prior to taking the shot. I have been more energetic and my headaches are gone. I am still fatigued but to a much lesser extent. I have also found that while I am still coughing after some exertion, my leg cramps and numbness have improved. All of this is progress and notable following the first injection of the vaccine. I would describe my recovery at 90 to 95% after the first shot on most days. I do note that I did have a relapse on the 6th day where I felt very fatigued. But in general, I am feeling better!
I will continue to track my progress for the next few weeks prior to my second Covid vaccine shot. I will report back following that experience and update you on how I am progressing with my symptoms following the next shot.
Until then, say strong.
Joe Keenan