Early in the COVID-19 pandemic, there was much discussion and warning about the potential impact of the virus on those with underlying pre-existing conditions. Now, with a 3 year learning curve, we have a better understanding about the devastating impact on those with pre-existing conditions, such as cancer, diabetes, obesity, etc. In addition, during the first few months following a coronavirus infection, even mild cases of COVID-19 are associated with subtle tissue damage and accelerated losses in brain regions tied to the sense of taste and smell, as well as a small loss in the brain’s overall volume, as a new British study has found. Also, having a mild case of COVID-19 is associated with a cognitive function deficit. These are the striking findings of the new study led by University of Oxford investigators, one that leading COVID researchers consider particularly important, because it is the first study of the disease’s potential impact on the brain that is based on brain scans taken both before and after participants contracted the Coronavirus.
There are, however, others who have experienced a devastating impact after COVID-19 infections: those with autoimmune disease, and those dealing with long-term COVID-19 issues. Both have reported long term physical symptoms, as well as brain injury-like symptoms, after being infected. Based on research and our experience, it turns out that these two groups seem one and the same, it’s now called long COVID, or COVID long-hauler. We will summarize our findings and experience about long COVID in a discussion that follows below. Regardless, those of us who are all too familiar with brain injury symptoms, will advocate for the inclusion of anyone who experiences brain injury symptoms, regardless of how the symptoms came to be. This webspace is not about any sort of diagnosis or treatment, but rather we have experience with, and offer mentoring and support for, anyone who is experiencing brain injury symptoms.
In the following section, we will attempt to explain what happens in cases of those with autoimmune disease and COVID-19 (long-hauler or long COVID), via our real life experience, including what we have learned through our experience and research.
Autoimmune disease –
My wife Diane has had an autoimmune disease all her life, hyper-mobile Ehler-Danlos Syndrome (hEDS), also referred to as Hyper-mobile Spectrum Disorder (HSD). But she was not diagnosed until her early 50’s. Prior to that diagnosis, she was a hard worker and a fit athlete who practiced and competed in Taekwondo regularly. She thought all her past 30+ surgeries were just the usual consequences of her practice and workout routines, unaware that hEDS would factor greatly as the primary cause of most of her surgeries and joint replacements. However, when her hand surgery and hip replacement surgeries were not successful and required multiple operations to correct, her doctors started to dig deeper. After some testing and lab work, her geneticist diagnosed her with hEDS, also known as HSD. The news was hard, but somewhat expected, and over the years we have learned to accept and adapt. Some of those adaptations included finding a special type of crutches that are made in South Africa (as ordinary crutches destroyed her hands), the multiple hand and finger splints that she wears daily, and the metal hip braces she had to wear, and often slept with, for months at a time.
Autoimmune & digestive issues –
While we accepted the reality of her diagnosis, aging brought with it another major problem. She started rapidly losing weight, experiencing gut pain, and other digestive and abdominal issues. Some of these abdominal and digestive issues that were present during childhood are now more severe. Despite following up with specialists and undergoing every test imaginable, the situation deteriorated quickly until she crashed. Physicians and specialists explored the causes of her digestive issues; they were largely unsuccessful in helping with a solution. Meanwhile, I searched the internet, across the USA and the western world, looking for anything that could help. During my research, one thing that popped up a few times, and sounded like a last resort, was the phrase “management by diet”. In retrospect this made sense – she needed foods and fluids to survive, but her body was sensitive and reacting to the foods and fluids that she was consuming. So, I began breaking down her intake and looking at all sorts of diets and explanations. Once I figured it out, we started implementing new dietary and hydration plans and that made a big difference. While this was not a cure (as there is none), it was definitely the next best thing, and things were getting better.
Please use this link to review our white paper “EDS-Digestives” – with years of experience managing food allergy and sensitivity, as well as hydration, for EDS patients and others with similar digestive tract issues.
Autoimmune & COVID-19 –
The COVID-19 pandemic brought with it additional challenges. Given Diane’s autoimmune hEDS (HSD) condition, she has maintained full vaccinations, and has been taking each booster once available, masking in public settings (she stills masked when in public). In addition to the standard side effects of the vaccine, she had experienced increased heart rate, but she was managing okay so far. Unfortunately, in December 2022, she became infected with COVID-19. Her symptoms were mild, and she recovered within days. A few days after she was feeling better, she tried to stand up from a seated position, then immediately went down on the floor in pain. She could not breathe, as each breath caused excruciating pain throughout her chest and radiated to her back. She laid flat on the ground to try to find a position that did not hurt. This went on for over 20 minutes. Now what? Her increased heart rate returned and became more frequent, more intense, and debilitating. Each time she would stand, her heart would race and she doubled over. Then, she started to become fatigued often while experiencing nausea and all sorts of pain in the chest, radiating in the back as well. She felt like her heart would not calm down until she was seated with her legs up. The pain was intense, like sharp stabbing pain that was also hot. You can imagine the anxiety that came with those feelings. Things were not going well. This included reduced activities, additional weight loss, etc. During this time, doctors were not sure what was going on, they ran tests and bloodwork. In any case, Diane had just retired, and prior to her retirement, she worked as an HR Coordinator for a local school district. Her responsibilities included interviewing and hiring teachers and principles, as well as helping maintain their certifications, etc. During the COVID-19 pandemic, she inherited the additional responsibility of triaging teachers and principals who had been infected with COVID-19. So, Diane reached out to people she knows who have had similar problems after recovery, and based on her conversations, she was sure she had POTS. So, I started researching POTS in the western world, in order to gain some understanding.
POTS & Long COVID –
Based on my research, it is now commonly believed that most people with long COVID are those with autoimmune disease who developed POTS after being infected with the Coronavirus. This does not include pre-existing conditions such as cancer, diabetes, obesity, etc. So, what is POTS? POTS is Postural Orthostatic Tachycardia Syndrome. It is a form of Dysautonomia, which is a disorder of the autonomic nervous system. This branch of the nervous system regulates functions we don’t consciously control, such as heart rate, blood pressure, sweating, body temperature, etc. The key characteristics of POTS are exaggerated by an increased heart rate when standing. Symptoms include fatigue, lightheadedness, dizziness, fogginess, headaches, nausea, vomiting, trouble focusing, and attention and memory issues, just to name a few. POTS is often misdiagnosed as a chronic anxiety or panic disorder. But POTS is considered to be an autoimmune disease, and affects those with other autoimmune diseases, such as EDS (HSD). POTS is usually triggered by an infection, including a viral infection, most commonly Lyme disease and COVID-19. In Diane’s case, her hEDS or HSD condition led to POTS after being infected with COVID-19.
Progressives MDs & POTS –
Currently, there are no specialized doctors who can treat long COVID or POTS in the USA. There are however, clinics that have started to form sporadically, which are manned by doctors who are interested in the subject, although not subject matter experts. POTS is a complicated condition, but there is a strong belief in the progressive medical community that POTS and long COVID are one and the same. Being an autoimmune disease, POTS has roots in dysautonomia and is believed to be the result of the disequilibrium between the “fight or flight” system, and the “rest and digest” system. Meaning, patients tend to spend more time in “fight or flight”, and less time in “rest and digest”. POTS is also believed to be attributed to inherited genetic vulnerabilities, especially those with autoimmune diseases, and an infection like COVID-19 will unleash this vulnerability. POTS results in legs holding on to circulated blood, as a result of the autonomic nervous disorder and gravity, which prevents sufficient blood from reaching the brain, especially in standing position. This will lead to faster heartbeats and rapid breathing in order to compensate, results in patients reporting pain and feeling terrible all the time, and all other sorts of physical symptoms.
Remedies for POTS –
While there is no cure for POTS, it is not a life threatening condition, and there are steps to take in order to help manage the physical symptoms. Please note that the adolescent segment of the POTS population are outside the scope of this discussion, and therefore excluded. For the rest of the POTS population, the physical symptoms of POTS can be managed by avoiding warm environments, minimizing carb intake, greatly increasing fluids, increasing salt and electrolytes (or the use of salt and electrolyte tablets), using compression socks, and deep breathing techniques. Slow and low impact cardio exercises are highly advised in order to help the body and muscles stay in shape, and offset consequences of decreased patient movement. This includes walking, rowing, recumbent type cycling, and leg exercise in a laying-down position. Beta blockers have also been shown to help, but you need to consult with a physician. In case of desperate measures or emergency, administering 1-2 liters of saline solution in the vein can provide relief for a couple of days (this is based on a study done in Akron, Ohio).
Please note – hEDS (HSD) patients also report typical symptoms of myofascial pain, along with POTS, after their COVID-19 infection. This is due to the nature of their connective tissue disorder that is typical with hEDS (HSD).
POTS does not cause brain injury, but the ongoing lack of blood circulation in the brain, brain tissue damage, or decrease in overall volume can lead to symptoms that are similar to those with cognitive functioning brain injury. Therefore, we believe that those brain injury-like symptoms should all be managed the same way as CFBI. This is all new to us, but we will keep updating this webspace as we learn more.