How Long Covid Exhausts (my) Body

Last night Seeking Boston's "crack" research team (also known as Mrs. Seeking Boston) sent me an article ("How Long Covid Exhausts the Body") from Josh Keller of the New York Times. As I slowly went through the words coming across the screen, it felt like they'd interviewed me and told my story. For those of you that still are wondering what Long Covid is, how it affects people, or why I drew the "short straw" like upwards of 30% of Americans (and worldwide) that get Long Covid; this article should help.

Source: New York Times

With that, ten key points from Josh's New York Times article to help you understand Long Covid and how it resonated with me.

1) "Long Covid is different" than onset of Covid symptoms. "A chronic illness with a wide variety of symptoms, many of which are not explainable using conventional lab tests. Difficulties in detecting the illness have led some doctors to dismiss patients, or to misdiagnose their symptoms as psychosomatic."

If you've followed my story, you know that I've had every lung and heart test there is among 150+ Dr and Hospital visits. Virtually all tests show "unremarkable results" that pre-2020 medicine cannot explain. I've had the heart Dr. tell me "your heart is fine, go out and run," and a Psychiatrist all but suggest it's "in my head" or that my obsession with healing is making it worse. F**k you Dr. Gaslight!

Fortunately, Mayo Clinic is my quarterback and diagnosed me with Long Covid in March of 2021--nearly a year after the onset of my illness.

2) There's a recent study that suggests there are four factors that makes it more likely that someone progresses from Covid to Long Covid. "high levels of viral RNA early during an infection, the presence of certain autoantibodies, the reactivation of Epstein-Barr virus and having Type 2 diabetes." I have two of the four including inflammation and previous exposure to Epstein-Barr. Not the lotto ticket you want to win.

3) Researchers suggest that viral genetic material can remain embedded in tissues for months (or in my case over two years.) "Ongoing studies are trying to determine if these viral reservoirs cause inflammation in surrounding tissues, which could lead to brain fog, gastrointestinal problems and other symptoms." In my case, I've had the worst three months, three weeks, and three days I've had since I got sick. Brain fog is thick. One of my earlier posts (and illustrations) suggests the "Rona" "tornado" left town but left destruction behind. The error in that post is the evil pathogens seemed to stay behind.

4) "Many long Covid patients struggle with physical activity long after their initial infection, and experience a relapse of symptoms if they exercise. Initial studies suggest that dysfunction in the circulatory system might impair the flow of oxygen to muscles and other tissues, limiting aerobic capacity and causing severe fatigue." In my case, I can have "bouts" of shortness of breath while simply sitting on the couch and the grocery store can be a nightmare. I hit the debilitating phase when my pulse oxygen drops to 92 or below which for some reason is happening more frequently of late.

There's much discussion in the forums around PEM or post exertion malaise. I have gone through two post-Covid clinics that tried to introduce gradual exercise. This is coming from a five-time Boston Marathon qualifier and sub twenty 5K runner. We're not talking the uphill sprints that my coach Benita used to prescribe but rather 10-15 minutes walking on the treadmill. We had to terminate the last program as my physical therapist noted that I was "digging a deeper hole."

My Small Fiber Polyneuropathy Biopsy Result

5) "One possible culprit (to the above breathing issues:) Chronic inflammation may damage nerve fibers that help control circulation, a condition called small fiber neuropathy." I had my local neurologist, Dr. Wicklund from UC Health repeat a test late last year which indeed showed I have small fiber polyneuropathy. The manifests itself in many ways and certainly explains the perplexing restless legs and burning feet that many Doctors couldn't explain in 2020.

6) Small fiber polyneuropathy part II. There have been many (early) unexplained symptoms; burning chest (see Alien--"The Monster Within" post,) chest pain, neck pain, and tender to painful skin--last week, as symptoms were heightened, simply brushing my hand on my arm was painful.

7) Hope theories. There are a few promising theories on the "Why" that is leading to some hopeful stories of treatment. One of those (see Resia Pretorius among others including Professor Doug Kell and his paper on microclots. Don't ask me as I was into journalism and art in high school but common sense would say that this "HAS" to be bloodstream (to explain shortness of breath) if lung and heart images are fine.

Source: New York Times

In terms of Microclots, it's definitely "research phase" which limits what conventional hospitals (like Mayo, National Jewish Health, and UC Health--all hospitals I've worked with) can do. Not a "knock against them"--imagine Polio or any other disease that first hit the planet. My beautiful bride did find another article on the topic that shared a company in the US; RTHM out of Redwood City, CA that's working with Dr. Pretorius and others. Stay tuned as I've reached out to them on potential treatments.

8) Hope part II. Along with microclots, you will see a lot of research, articles and forum discussion around mitochondria and cytokine "storms." 

"Inflammatory substances called cytokines, which are often elevated in long Covid patients, may injure the mitochondria that power the body’s cells, making them less able to use oxygen. Walls of blood vessels may also become inflamed, limiting the uptake of oxygen." Back to my "somehow I never took chemistry in high school" expert background (#NOT,) it HAS to be in the bloodstream or cellular level; otherwise, what can explain it attacking all parts of my body?

9) Close ties to ME/CFS. Much of my #longcovid twitter feed is comingled with those suffering from Myalgic Encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome--or ME/CFS. Debillitating is the most-often used word when describing this condition. 

My "theta waves showing cognitive issues and 
my brain working "double time" to manage
the chaos in my body

Josh writes,"Some long Covid patients meet the criteria for ME/CFS (also known as chronic fatigue syndrome), which often starts after a viral infection. Researchers have found that ME/CFS patients also suffer from a lack of oxygen triggered by circulatory problems. That puts enormous strain on the body’s metabolism and makes simple activities feel like strenuous exercise. Last year, one of my (what I call long covid) sub-diagnosis  was CFS from Dr. Ganesh from Mayo Clinic.

This would explain why Target or my local King Soopers shopping experiences can be a nightmare combining confusion with severe bouts of shortness of breath when shopping for as few as a few items. Absolutely brutal.

10) I started this blog talking about "brain fog" and will end with it. Simply put, I went from a high-performing software sales executive that now sometimes has to look up my kids birthdays, couldn't recently recite three items I was supposed to get from the store (five minutes later,) or having to pull over to Google where I am going to pick up dinner (when I'd suggested that night's dinner fare.)

"Even people with mild cases of Covid can experience sustained cognitive impairments, including reduced attention, memory and word-finding. Possible long-term neurological problems from Covid constitute “a major public health crisis,” according to Dr. Avindra Nath, the clinical director of the National Institute of Neurological Disorders and Stroke." (New York Times.)

Despite Dr. Gaslight suggesting I "roll over" and accept it, I continue to seek answers and treatment. Locally, I've been working with the Braincode Center which provided a "brain map" of what's going on in my coconut--I know, I know...I was afraid of what they'd find up there. It's "early" for Braincode yet they are seeing commonality in people coming in for Long Covid. 

My initial "brain mapping" shows my theta waves are going "berserk" (my words not theirs.) The bright red (top row second from the left) shows this overactivity which is indicative of my brain trying to manage all the chaos happening upstairs. They have also seen this in other patients dealing with cognitive issues. I'm five sessions in to their neurofeedback training which helps "re-map" the brain. 

I don't expect Braincode to be a panacea but if it can help calm the brain "sending fire engines" where there's no fire or help mitigate the clinical depression, it will be money well spent.

Thanks to Josh and the continued long covid coverage from the New York Times. I still find people who don't know what Long Covid is, or don't understand what's wrong with me. Awareness is key to funding research, so one step at a time.