This is Joe Keenan, author of Covid Long Haulers. Welcome to the next edition of my Covid Chronicles.
I want to firstly thank all of my followers for taking the time to check out my blog and listen to my first podcast. Your kind words of support are appreciated and feedback is welcomed. I started this blog to try and help others by sharing my experiences. I am very pleased to see that my goal is being achieved, even if only to help out in a small way.
One of the most common comments that I have received from those that have visited my blog, is a request for me to share more of my story so that others might know more about what my Long Haul experience has been like and what am I doing about it. So to be fair to those that have taken the time to comment, I will dedicate this post to answer those questions.
In the world of Covid Long Hauler’s, I am still a short timer. There are many around the globe that are still dealing with the effects of the virus dating back nine to twelve months ago. But none the less, the symptoms being shared by others are similar regardless of the date of origination.
Its been 94 days since I first started feeling the early symptoms. In my case it manifested in my chest and made me feel like I was having angina. It was 71 days ago that I tested positive for Covid 19, two days later I was admitted to the emergency with full blown Covid symptoms. On January 26, 2021 I was cleared by my doctor of Covid pneumonia and stepped down the medications that I was taking to combat its effects. Soon afterwards I started to realize that the effects of the virus were not going away and I was no tsure what was happening. At the time, I had never heard of the concept of Long Covid. Today, a full three months after starting to feel the onset of the virus I feel 85% recovered. But I am still impacted by brain fog, fatigue, leg pain, numbness and tingling or burning skin sensations. Every day is a step forward but I still have days when I can’t manage the fatigue and require extensive rest.
Who Cares About My Care
Queries about who is managing my care is a common question that I get from people asking about my recovering. What kinds of doctors are you seeing and how often? Who is telling you which doctors to see next? To those dealing with the daily grind of Long Covid it can be very overwhelming. In the article that I published in my blog, “Multidisciplinary Teams Are Key” it clearly lays out the need for Long Haulers to manage multiple healthcare providers and treatments at one time. Some, but not many Long Covid patients have been selected by Covid research groups or a research hospital that is managing the diagnostics and appointments on their behalf. Other like me are being treated in an integrated health network that allows the multitudes of medical professionals to share your file electronically and centrally build a file for your primary physician to review as needed. While others are left completely to their own devices and need to fully project manage their own care. Regardless of how you are managing your recovery, it is time consuming and requires patience and tenacity.
Advocate For Yourself
If I can only give one message to those facing the daunting task of Long Covid recovery is that it is everyone’s responsibility to advocate for yourself. Don’t take NO for an answer, don’t accept less than stellar attention and make sure you push the system as hard as you can. In my case, I am the type of person normally that would not even think of attending an emergency room. I don’t want to take medical attention away from those that are really sick. That attitude may have prolonged my pneumonia recovery as I was being very stubborn about going into the emergency. When I did finally go in, my CT scan showed a very progressed pneumonia. Was that avoidable? At first I struggled to get a proper diagnosis even when presenting with clear Covid symptoms. To that end, my previous primary physician (no longer my physician) sent me home with an inhaler the week of my hospitalization claiming that I was having an asthma attack. On top of this, I had to force him to give me a Covid test because I had tested negative in November! It was actually the next day when I attended an after hours clinic that I received a rapid test that confirmed what I already instinctively knew. Don’t accept poor service from your health care provider. It could save your life. My hospital stay at Porter Hospital in Denver, put me into the Centura Health Network and I have not looked back since. I was able to secure a fantastic new primary care physician, out patient Covid recovery support and currently all of my specialists and care integrate into their centralized system. This change of medical providers has made my experience as a patient immensely earlier.
Autoimmune Or Not to Autoimmune
Much of the research that I have been sharing on my blog has a strong indication that Long Covid is actually an autoimmune response. This means that your body is in a heightened level of response and is burning out your immune system. So what is the bodies response to the Covid virus? According to the article that I posted by the Scientist on how Covid could trigger chronic disease in some people, they stated;
“Normally, the body reins in the immune response after an infection is tamped down, but perhaps SARS-CoV-2 infections could cause the immune system to get stuck in that overactive state in some people, pouring a persistent shower of cytokines into the blood, notes Yale University immunologist Akiko Iwasaki. It’s theoretically possible that the virus could seek long-term refuge in an organ such as the brain that isn’t easily accessible to the immune system, Iwasaki says. This could cause a consistent trickle of virus particles to escape into the blood, where they aggravate an unceasing immune response, she adds, although with a few exceptions, this has never been shown for RNA viruses such as SARS-CoV-2, Nath says.
Alternatively, the virus itself may be completely eradicated from the body, but leave behind snippets of viral RNA in a reservoir organ. The RNA itself, or the translated protein—which the human body’s own machinery would readily manufacture from the viral RNA—could set off immune reactions once they’re found by the body’s B cells and T cells, Iwasaki and Nath suggest. Possibly in line with this theory, there are some reports of persisting fragments of viral RNA in the throats of people who recovered from COVID-19 months before. ”
Regardless of which theory you or your doctor agrees is correct, what is very clear from the research is that for many their bodies are at war with Covid long after the initial infection.
The Scientist also outlines several scientific studies that tries to link the bodies immune responses post Covid, including early work on the relationship between viral infections and patients that suffered post illness cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a debilitating and poorly understood condition associated with some viral infections.
The Scientist article goes on to state that, “Although it’s still a mystery what causes the (ME/CFS) disease, according to one survey, nearly 75 percent of ME/CFS patients have described viral infections prior to the onset of their symptoms. Other studies have linked particular pathogens, including West Nile, Ebola, and Epstein-Barr viruses, with the development of ME/CFS-like symptoms in substantial numbers of infected people. This association was also observed with SARS-CoV-2’s close relative, SARS-CoV, which caused the SARS epidemic of 2003. One study conducted a year after the SARS outbreak in Toronto found that fatigue was common among survivors, and 17 percent of them still hadn’t returned to work due to long-term health issues. Even three years after Toronto’s SARS outbreak, a study found widespread fatigue and achiness among those who had been infected. ”
The symptoms of Chronic fatigue syndrome include;
- Pain in muscles or joints
- Tender lymph nodes
- To name a few.
Similarly, the Epstein Barr virus has lasting impacts on the body that mirror chronic fatigue syndrome. Interestingly, the blood work that I completed in late November 2020, showed a raised level of Epstein Barr in my results. At the time the doctor described this as unusual and probably because I was fighting something off. Was it a precursor to Covid? Is it just coincidence? I am scheduled to get new blood work again this month and I will be interested to see if the same indicator shows up in the results.
I am going to close off this post by saying that my research is pointing very strongly to the fact that Covid Long Haulers are experiencing similar symptoms and effects to those that suffer from better known autoimmune diseases. That being the case, then the cure for Long Covid might lie in the same treatments as chronic fatigue syndrome or Epstein Barr.
In my next post, I will explore more about the autoimmune diseases listed in this article, there triggers, and any research that can be applied to Covid Long Haulers. Until then, thank you again to all of my followers.