Updated: Nov 14, 2022
Acute COVID is waning. Here comes Post-COVID Syndrome (PCS).
Evidence is mounting that COVID-19 is leaving a host of long-term issues.
The U.S. has taken huge strides in the last month to tame acute outbreaks of COVID. Our understanding of how and when the virus spreads is getting clearer, as is our knowledge of who’s at the most risk. Vaccination appears to be effective at reducing infection and spread, so inoculation rates are climbing. There are more and more treatment options are available and the weather in the North is finally providing an assist, allowing people to return outdoors to open spaces and soak up some vital vitamin D. Life is returning to something that resembles normal for many Americans.
Sadly, this won’t be the end of COVID. One of the unfortunate aftermaths of an infection with the SARS-COV-2 virus is what is being dubbed “long hauler syndrome" or Post-COVID Syndrome (PCS). People afflicted with PCS report cognitive changes, headaches, tingling, dizziness, pain, fatigue, and mood changes.
Though the virus was novel, battling long-term symptoms from a pandemic is hardly unique. We have known for years that pathogens can lead to long-lasting health effects. Strep infections are linked to heart disease and neurological changes. Human papillomavirus (HPV) can lead to cervical cancer. H. Pylori can cause stomach cancer. Epstein-Barr virus can lead to cancer and multiple viruses are linked with chronic fatigue syndrome. Indeed, every major pandemic for which we have medical records has been followed by an increase in chronic ailments.
The official definition of PCS is evolving, but most country's national health organizations define it as “symptoms that continue more than 10-12 weeks and aren’t explained by another diagnosis.” Britain, which has led the world in tracing, studying, and vaccinating against SARS-COV-2, estimates that 14% of the people who’ve tested positive for COVID report post-COVID symptoms. A summary review in The Lancet found even higher rates of symptoms 6 months after infection. Over 33 million Americans have had a confirmed diagnosis of COVID, which means well over 5 million are likely still suffering.
Generally speaking, post-COVID symptoms fall into three categories (all well-known to those suffering from a chronic condition):
Exercise Intolerance (fatigue), where patients feel exhausted after even small tasks.
Brain Fog (cognitive impairment) where patients experience memory issues and/or trouble with everyday tasks like sentence formation or simple recall.
Dysautonomia (issues with the Central Nervous System - an umbrella term for a variety of issues governed by the CNS including irregular heartbeat and breathing). Patients may indicate dizziness, nausea, tingling, and even heart palpitations.
For many of our patients at CIH, this all sounds way too familiar. It may also be a blessing in disguise, to the extent that these long-hauler complaints are drawing attention and research to these conditions.
Let the Research Begin!
Hypotheses about post-COVID fall into one of three categories:
Long-COVID is caused by a persistent viral infection
Long-COVID is an autoimmune disorder
Damage caused by inflammation during the acute phase has impaired life after recovery
The Virus that Won’t Quit
The first hypothesis is that the body doesn’t clear the virus after infection. There is some evidence for this idea. A study in the The Journal of Medical Virology found traces of SARS-COV-2 RNA months after the initial infection. Urinalysis detected viral products as well.
History is on the side of this hypothesis as well. Viruses such as measles and Ebola (which share similar RNA to SARS-COV-2) are understood to transform once in a body. The bacteria Borrelia burgdorferi, responsible for Lyme Disease, are known to change shape, hiding in various forms including round bodies, cystic forms, and in biofilms. In short, bacteria and viruses are experts at survival. It’s why a single prescription is rarely effective at treating these chronic infections.
Hiding in plain sight
The second hypothesis suggests that long-COVID creates an autoimmune response – hijacking the body’s own defense system to protect itself. Again, the similarities to other chronic infections are quite relevant here. Borrelia burgdorferi doesn’t just mutate in the body, it changes the immune system as well.
For one, it creates a deficit in the host’s ability to induce and/or maintain long-term protective antibodies by interfering with the quality of B-cells created (the white blood cells that make the custom antibodies that target a specific pathogen). In English, that means your body doesn’t create long-term antibodies to fight the infection
The bacteria work their way into your cells and tissues and then focus the immune system on the extra-cellular space (or the space outside of the cells). To paraphrase the immortal Obi-Wan, the bacteria is basically telling your body “these are not the infections you are looking for.” Satisfied that the initial threat has been neutralized, your immune system then looks for a new target- itself.
Early research suggests that long-COVID may wreak havoc on the immune system in a similar way. Patients are found exhibiting abnormal B-cell activity, or a low number of interferons (molecules that fight viral infections specifically). Several studies have found depleted and weak T-cells (responsible for activating B-cells in the immune response). Lab studies in post-COVID patients with cognitive impairment demonstrate different t-cell responses than those who have recovered from COVID without symptoms.
Inflammation Strikes Back
Regular readers of our blogs will know that most of our content references inflammation. This is another catch-all term for immune activation. Inflammation is at least a contributing factor, if not the cause for most of the conditions we treat.
The COVID infection seemed particularly effective at triggering a cytokine storm of inflammation (something I wrote about last year). The hypothesis here is that the duration and severity of the storm somehow damages the autonomic nervous system, lung walls, or lining of the blood vessels. If true, this could constrict the flow of blood to the brain and cause the cognitive decline that patients report.
Rehabbing from Post-Covid
As with all chronic conditions, long-COVID is likely a combination of all three hypotheses and additional factors. Understanding the root cause is key to untangling a patient's issues. Antiviral drugs might be highly effective if PCS is caused by persistent viruses, but they could also be totally ineffective if the issue is damaged blood vessels or constricted airways. As research provides better insights into why an individual suffers from PCS, we will be better equipped to tailor treatments.
Until the day arrives when PCS can be treated with a single protocol, the best option is a Functional Medicine approach. Here’s where the tables turn and the work done on Lyme, CFS and other multi-factorial, multi-symptomatic conditions can inform PCS treatments.
Start with the root cause. Make sure your doctor is digging deep into your life to understand all the factors that are contributing, then designing programs that specifically address those root causes. Intervening at the source for the symptom is the best way to restore function on an ongoing basis. There are a multitude of tests that can help pinpoint underlying issues, so there's no excuse to leave stones unturned. When dealing with patients suffering from chronic infections, it's not uncommon to find depleted levels of nutrients or high toxin levels. Relieving symptoms may be as simple as restoring levels back up to normal.
Next, trace the root cause through your body's other major systems. Issues with one system frequently cause strain on others as they try to compensate. Your individualized plan should check for, test, and rehab ALL sources of issues, not just your original complaint. For example, patients complaining of brain fog will frequently have hormone levels outside normal ranges. To regain full function, both the nervous system and hormone levels need to be checked.
Finally, use every tool available in the medical tool chest! When fighting an acute COVID infection, medical teams use everything at their disposal (such as prescription drugs, devices like ventilators, and vitamin IVs like C or Zinc). Your plan for fighting post-covid should include at least as many options.
If your long-covid is caused by persistent viral material, a prescription might be part of the plan. If you have extreme inflammation, then anti-inflammatory protocols of supplements and vitamins may be coupled with specific exercises. The upshot: make sure your medical team is providing you with a comprehensive set of options and tailoring it to your specific case.
Long after acute covid-19 is behind us, PCS will remain. This is a big problem to be sure, but not it's not a unique problem and my hope is that the work we've done to understand how to rehabilitate patients today, coupled with research on PCS coming out tomorrow will make the world a less chronic place for everyone.
Dr. Casey Kelley