Long Haul Covid: A Problem With Many Faces
Two things I want to get out of the way from the beginning. One, I have Long Haul Covid. Also, I know several colleagues and friends who are dealing with the same thing. It is obvious to us that there is a “before Covid” period and an “after Covid” period. It’s interesting that when you start to dig into some of the disease processes and look at health care professionals who are treating and studying long haul Covid, many of them are experiencing the same symptoms as the people they are treating.
The second thing that I want to address, is that Long Haul Covid is real. There are now objective measurements that detect abnormalities in people with Long Haul that involve how oxygen is delivered to muscles and there are definitely some immune system dysfunction abnormalities that can be tested by blood tests to confirm the disease. There are also some rate of breathing abnormalities and heart rate anomalies that are commonly observed in Long Haul Covid patients.
Very Few Experts
For the sake of clarity and honesty, let’s be clear about one thing, when it comes to Covid, especially at the beginning of the pandemic, there were no experts. Except in rare instances, I would venture to say the same thing about Long Haul Covid. The area of study involving Long Haul Covid is so new that the research is very sparse. We will know much more in the next 2 to 4 years.
In the Spring of 2020, when we were taking on the first surge, it was plainly evident that what we as physicians considered to be standard and accepted care for these patients was not working. When it comes to medicine, this is one of the rare times when going to the cookbook was not the right approach. That is why it’s called the “art of medicine”. We have to get creative at times because you get thrown a curveball once in a while and you have to make adjustments on the fly.
In the Spring of 2020, when the ICU survival rates of Covid patients on a ventilator were hovering around 10 percent, critical care physicians and emergency room physicians began to adjust their approach to very sick Covid patients in order to improve their chances of survival. I myself was sitting in on weekly Zoom calls organized by emergency room physicians in academic centers all over the country so we could share the experiences of physicians who were getting hit by large numbers of very sick Covid patients.
What wasn’t being reported nationally, is that in many instances, emergency room physicians and critical care physicians were steeped in frustration and to be honest, were a little afraid because when you’re facing an enemy who is killing your patients and you are running out of bullets in your gun, that is a little bit scary. One of the most sobering ideas that many people who were on these Zoom calls began to realize was that when we took a by the book, standard of care medicine approach, there was a distinct possibility that it was actually harming our patients. In other words the treatment was worse than the disease, which is a scenario no physician wants to be involved in.
The question is, could this be exactly what is going on in Long Haul Covid?
Long Haul Covid: It’s Not In Your Head, It’s Everywhere Else
It’s funny to me that I was just going over some of the symptoms I was having with my mother, telling her about my fatigue and the problems I am having doing just the normal day to day work of being a physician seeing patients. My mom responded, “oh, that’s all in your head.”
If you are suffering from some of these symptoms, I just want to tell you, it’s not in your head, it may be everywhere else.
Let’s just get that out of the way right now. Estimates of Long Haul Covid sufferers in the United States are around 11 to 24 million people. That’s way more than the number of people who are diagnosed with cancer every year (1.6 million people).
Researchers who study long COVID, which has been estimated to afflict about 14 to 30 percent of people infected with the coronavirus, say that because Omicron appeared so recently, they can make only educated guesses about its long-term impact. But the scientists note there are reasons to be both cautiously optimistic and very concerned.
https://www.scientificamerican.com/article/long-haul-covid-cases-could-spike-after-latest-wave/
The number of symptoms associated with Long Haul are up to around 200, but we know that there are major symptoms that are important to note because they are associated with several disease states or processes that are felt to be related to Long Haul. The most prominent symptoms are listed below,
- Difficulty breathing or shortness of breath
- Tiredness or fatigue
- Symptoms that get worse after physical or mental activities (also known as post-exertional malaise)
- Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
- Cough
- Chest or stomach pain
- Headache
- Fast-beating or pounding heart (also known as heart palpitations)
- Joint or muscle pain
- Pins-and-needles feeling
- Diarrhea
- Sleep problems
- Fever
- Dizziness on standing (lightheadedness)
- Rash
- Mood changes
- Change in smell or taste
- Changes in menstrual period cycles
https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html
From what I have been studying and researching over the past few months, the biggies when it comes to symptoms are fatigue, post-exertional malaise, cough, shortness of breath, brain fog, and joint or muscle aches.
One Problem: Many Faces
So what do we know now? Well, not as much as we would like. The problem with this unique disease phenomenon is that it looks very similar to other disease entities. So what we are seeing when we look into Long Haul Covid is physicians or other health care professionals who have an interest or an expertise in a certain area attribute the symptoms of Long Haul Covid to the disease entity that they have the most experience with. It’s a “when all you have is a hammer, every problem is a nail” kind of phenomenon. So let’s look at some of the “many faces” that people have ascribed Long Haul Covid to be a manifestation of. These are the most common
1. Mast Cell Activation Syndrom (MCAS)
2. Myalgic encephalomyelitis/ Chronic Fatigue Syndrome
3. Dysautonomia or Postural Orthostatic Hypotension syndrome (Pots)
4. Hyper Oxidative Stress
5. Hyper Inflammatory or Immune dysfunction state (possible retained viral antigen)
So when people are going to their physician to treat their Long Haul Covid symptoms, most physicians don’t know much about it and refer their patients to the nearest medical facility or Long Haul clinic at the closest medical center if you live in an urban area. Most often, these patients are then tested by whatever specialist they are being referred to like cardiology or a pulmonary specialist. The specialists who are doing the work ups start with the testing that they are most familiar with including stress tests, ct scans or pulmonary function testing. When the extensive workups come back negative, they are told to exercise. This can sometimes make their symptoms worse. What now?
Is There a Root For This Problem?
There are some treatment regimens that are specific for some disease entities, but what if your symptoms are not directly related to any of the disease states listed above? That is the problem that physicians and experts in their respective fields are grappling with at this time.
Sure there are symptoms based treatments that can make you feel better for a short period of time, but are they getting at the root of the problem? What exactly is the root of the problem?
Well, if there is one purported expert of Long Haul Covid at the current time it would have to be Dr Bruce Patterson. He has been working on research that has demonstrated persistent viral proteins from previous Covid infection. He has also shown that in his study patients, there was an ongoing immune response to persistent viral antigens up to 15 months after infection. This is an important finding that could explain long hauler symptoms.
It is important to note that the S1 protein detected in these patients appears to be retained from prior infection or phagocytosis of infected cells undergoing apoptosis and is not the result of persistent viral replication. Full length sequencing of the five cases submitted for genomic analysis failed to identify any full-length sequence in the spike protein gene, or any other gene, that could account for the observed spike protein detected by proteomic analysis.
In contrast, the data reported here supports the hypothesis that an immune response to persistent viral antigens, specifically the S1 fragment of the spike protein eliciting an the PASC immune response previously published (5) and marked by elevated inflammatory markers including IFN-γ, IL-6, IL-10, and IL-2, among others.
Here is the research article title and the co-authors listed. You can dig more deeply here,
https://www.frontiersin.org/articles/10.3389/fimmu.2021.746021/full
Persistence of SARS CoV-2 S1 Protein in CD16+ Monocytes in Post-Acute Sequelae of COVID-19 (PASC) up to 15 Months Post-Infection
- 1Department of Research and Development, IncellDx Inc, San Carlos, CA, United States
- 2Department of Anesthesia, Lawrence General Hospital, Lawrence, MA, United States
- 3Department of Molecular Diagnostics, Bio-Rad Laboratories, Hercules, CA, United States
- 4Department of Allergy and Immunology, New York University (NYU) Langone Health, New York, NY, United States
- 5Lab of Tumor Chemosensitivity, Research Center on Tropical Diseases (CIET)/Research Center on Surggery and Cancer (DC) Lab, Faculty of Microbiology, Universidad de Costa Rica, San Jose, Costa Rica
- 6Department of Computer Science and Informatics (ECCI), Universidad de Costa Rica, San Jose, Costa Rica
- 7Department of Molecular Biology, Avrok Laboratories, Inc., Azusa, CA, United States
- 8Vaccine & Gene Therapy Institute and Oregon National Primate Research Center, Oregon Health & Science University, Portland, OR, United States
So this is a good place to start when it comes to a therapeutic intervention and that is the next leg on this deep dive into trying to come up with some type of effective treatment for people who are suffering from Long Haul Covid.
Until next time,
Johnny Cavazos MD
bravethewaveweride@gmail.com
PS, Here is the follow up post to why we should be concerned about Long Haul Covid, the studies and the data are extremely noteworthy. https://bravethewave.org/2022/03/24/long-haul-covid-a-medical-emergency/