Is ‘Long Vax Syndrome’ A Rare Covid-19 Vaccine Side Effect? Here’s What’s Known

Long Covid has long been a problem that has not gotten enough attention throughout the Covid-19 pandemic. And now researchers are longing to better understand “Long Vax Syndrome,” a potential rare condition in which people’s immune systems may be overreacting to the Covid-19 vaccine. It’s being called “Long Vax” not because they’ve gotten vaccinated with a particularly long needle but because the symptoms have resembled long Covid. This has included headaches, major fatigue, blood pressure issues and abnormal heart rates that have lasted days, weeks and potentially even longer. The long and short it, though, is that the number of reported and confirmed “Long Vax” cases have still been far, far fewer than the number of reported and confirmed long Covid cases so far. Nevertheless, any potential real side effect of Covid-19 deserves a long, hard look by real scientists who really understand this area.

It’s been tough to study this syndrome in large part because the number of reported cases has been so low to date and there hasn’t exactly been an abundance of funding and support for such work. A pre-print posted on medR_xiv back on May 17, 2022, did describe what happened to 23 patients who had reported seemingly nerve-related symptoms that began within a month of getting vaccinated against Covid-19. The patients ranged in age from 27 to 71 years with the median age being 40 years. All but two were women. None of them had any evidence of previous neurological illnesses.

However, after getting vaccinated, all 23 experienced funny sensations—funny as in pins and needles and not ha-ha funny—that were quite severe on their faces or limbs. Nearly, two-thirds (61%) had experienced POTS, as well as heat intolerance and irregular heartbeats. Now, in this case, POTS doesn’t refer to the cookware as most people have experienced cookware at some point. Instead, POTS here stands for postural orthostatic tachycardia syndrome. This is a medicalese way of saying increases in your heart rate above 100 beats per minute (hence the word tachycardia) when you change positions (hence the word postural) going from a lying position—meaning what you might do on a bed rather than what some politicians do a lot—to a standing one (hence the word orthostatic). Your heart ends up beating faster because your body cannot maintain enough blood flow to your brain when you shift to the standing position. This may be accompanied by lightheadedness, dizziness, fainting, fatigue or a drop in measured blood pressure.

Testing of 12 of these patients confirmed the presence of POTS in six of them. At the same time, the research team found that seven of the patients actually had reduced sweat production in their limbs. So what is the possible connection between POTS and not being able to sweat as much? Well, you could say the nerve of such findings.

The research team led by Farinaz Safavi, M.D., Ph.D. and Avindra Nath, M.D., from the National Institute of Neurological Disorders and Stroke decided to put some skin in the game, so to speak, and take samples of skin from the lower legs of 16 of these patients. These biopsies revealed changes in and around the nerves of some of these patients, including 19% having abnormal swelling of their nerve axons. There was also quite a reaction in some cases. Some of these biopsies also showed collections of complement C4d—a chemical produced when the immune system reacts to something—in the cells lining blood vessels. All in all, over half (52%) of the patients had objective evidence of what’s called small-fiber peripheral neuropathy.

So, it looked like the immune system may have been generating a reaction against nerve cells in the patients’ bodies, causing inflammation. When you have an immune system reaction and inflammation, one general way is to give corticosteroids. Corticosteroids is sort of like the song “Don’t Stop Believing” by Journey. They can be overused but can make you feel better regardless of the issue.

Eventually, 12 of these patients received oral corticosteroids treatment with seven experiencing either complete or near-complete improvement of their symptoms over the course of two weeks. By comparison, only one of the 11 patients who did not receive immunotherapy experienced full recovery from their symptoms at the 12-week mark. Further down the road, five to nine months after they first experienced symptoms, three of those who hadn’t yet recovered were given intravenous immunoglobulin. All three had resolution of their symptoms within two weeks

Keep in mind that the pre-print was uploaded quite a long time ago, long at least in Scaramucci time. That was back when Taco Bell was running out of their Mexican Pizza as opposed to all the shortages that are occurring these days. This study still hasn’t been officially published in any respectable peer-reviewed scientific journal. So, of course, you’ve got to take any pre-print with a fanny pack of salt. Pre-prints are a bit like videos on YouTube. Anyone can upload a pre-print as long as they have Internet access and opposable thumbs, although a seal could potentially upload a pre-print as well, assuming that the keyboard were large enough.

Moreover, this was a case series and not a study with adequate controls for comparison. A case series such as this alone can’t determine whether the observed symptoms were actually due to the vaccine versus some other coincidence. Remember science is not about simply “casing” the joint, so to speak. While a case series can bring attention to something that may merit further investigation, it cannot determine cause-and-effect. Additionally, one study is never enough. Before any stronger conclusions can be drawn, you’ve got to conduct other types of scientific studies and see what the collective evidence shows.

Nevertheless, this pre-print hasn’t been the only report of POTS and various pangs after Covid-19 vaccination. If you are curious, there was that case report published on May 4, 2021 in the journal Cureus of a 42-year-old man developing POTS after getting an Covid-19 mRNA vaccine. There was also that study published on December 4, 2o22, in Nature Cardiovascular Research co-authored by Alan C. Kwan, MD, and Susan Cheng, MD, of the Smidt Heart Institute at Cedars Sinai Medical Center in Los Angeles, California. They analyzed over 280,000 Covid-19 vaccination records and over 12,000 severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection records from Cedars Sinai Medical Center sing a sequence-symmetry analysis in over 280,000 COVID-19 vaccination records. They found that patients were 33% more likely to have a POTS-related diagnosis after vaccination compared with before vaccination. However, their analysis revealed that patients were 435% more likely to have a POTS-related diagnosis after exposure to SARS-CoV-2 infection than after vaccination. This suggested that POTS seemed to be possibility after vaccination but really at a much, much lower rate than after SARS-CoV-2 infection.

All of this has prompted more real scientists to listen even more closely to anyone expressing nerve-related symptoms after vaccination against Covid-19. Akiko Iwasaki, PhD, a Sterling Professor of Immunobiology and Molecular, Cellular and Developmental Biology, and Harlan Krumholz, MD, SM, a Harold H. Hines, Jr. Professor of Medicine at Yale University are leading the Yale LISTEN Study. LISTEN stands for Listen to Immune, Symptom and Treatment Experiences Now, as opposed to some other day. The stated purpose of this LISTEN study is “to understand Long Covid, post-vaccine adverse events and the corresponding immune responses by collecting information about symptoms and medical history from participants who are members of a patient community, and by collecting blood and saliva samples from some participants.”

It is important to listen to any person who may be experiencing unusual symptoms after Covid-19 vaccination. You can’t let the noise from various anti-vaccination politicians, TV/podcast personalities, and anonymous social media accounts drown out any real concerns. No, there’s no real evidence that Covid-19 vaccines can turn you into a giant magnet or a refrigerator door, as I’ve covered for Forbes. No, there’s no real evidence that people are using Covid-19 vaccines for genocide or to inject microchips to track and control people. No, there’s no real evidence that many athletes are dying suddenly because of Covid-19 vaccines.

But this “Long Vax” possibility may have some real legs and deserves more investigation. Again, at this point, it seems to be a rare occurrence, although the scientific literature is currently short on studies to tell the true incidence. And there’s always the chance that some more people have been suffering in silence. Sure, the potential benefits of the Covid-19 vaccines still appear to way outweigh the risk of “Long Vax” and other possible side effects. After all, you don’t want to say, better long Covid than long Vax. Sure, you don’t want to inadvertently support the unfounded claims of anti-vaxxers looking to cause chaos. But this doesn’t mean that long Vax doesn’t deserve a much longer and much harder look. In short, vaccine advocates shouldn’t get into a POTS calling the kettle black situation and deny something that data may be showing. It may be a waste of time listening to those pushing unfounded claims about Covid-19 vaccines, but it is important to listen to those who may be suffering real problems after Covid-19 vaccination.