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“Coming together is a beginning; keeping together is progress; working together is success.”
We’re one year into the pandemic, and lately we’ve been hearing more and more about “long COVID”, “COVID long haulers” and “Post-COVID Syndrome” in the media.
But what exactly is long COVID or Post-COVID Inflammatory Syndrome? Who are these people who had COVID, have since tested negative—but still have symptoms? And why are these long haul symptoms happening to some people, but not others?
In the next series of 3 articles about Post-Covid Inflammatory Syndrome, we’re going to take a deep dive into the illness—but first we have to understand what this condition is and, more importantly, we have to understand that Long COVID is very real. These are real people that are suffering from a real disease and complications which our current healthcare system doesn’t have any answers or treatments for.
But in the integrative and functional medicine world, we’ve been treating these patients since last summer.
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So, what exactly does it mean to be a long hauler or have Long COVID?
This is a post-infectious inflammatory syndrome. What that means is, someone gets a virus and clears the virus—but after the virus has gone, they still remain inflamed.
And we’re not just talking about a handful of patients, here.
These numbers are staggering, which is why I’ve starting referring to Long Covid as the “Post-Pandemic Epidemic.”
As the pandemic goes away and we get to herd immunity,
there are still going to be a large group of people
who will suffer from symptoms after they’re “better.”
Post-COVID Inflammatory Syndrome: Not (Entirely) a New Frontier
While Long COVID is a new concept for all of us, post-infectious inflammatory diseases and complications as a whole are not. We have many other examples and other paradigms that those of us in the functional medicine world are pulling from to help us address long hauler patients. To get a better understanding of Post-COVID Inflammatory syndrome, we can study these other illnesses that we have more experience with.
Other Post-Infectious Inflammatory Diseases
1. Post -ICU Syndrome or PCIS
- Post-ICU Syndrome patients are people who have residual symptoms for months and months (sometimes even years) after being in the intensive care unit
- Symptoms include fatigue, brain fog, muscle aches, shortness of breath, memory lapses. These are just some of the symptoms that can occur with this syndrome
2. Chronic Inflammatory Response Syndrome
- This syndrome can be caused by spending living in water damaged buildings or be associated with Post-Lyme Syndrome
- Chronic Inflammatory Response Syndrome‘s symptoms are very similar to those found in Post-COVID Syndrome and include chest pain, shortness of breath, palpitations, brain fog. These patients have a lot of inflammatory markers
3. Auto Inflammatory Syndromes
- Can be caused by traumatic brain injuries, chronic fatigue, fibromyalgia, or myalgic encephalomyelitis
4. ASIA Syndrome
- ASIA stands for Autoimmune/Inflammatory Syndrome Induced by Adjuvants. It can be brought on by metals, substances in vaccines or even breast implants.
The point is, is that we have other examples of auto-inflammatory syndromes that are very, very similar to long COVID or post COVID syndrome.
Knowledge of these examples help us in the functional medicine world, because obviously we’ve been here before. We’ve been dealing with these complex patients with multi-system, multi-symptom maladies for years and years and years.
But what is the SARS-CoV-2 virus? This virus is new and we are continuing to learn about the effects and variants—but, the good news is, we do have all kinds of tools in our toolkit to deal with inflammatory syndromes.
Getting a Post-COVID Inflammatory Syndrome Diagnosis
The first thing with Long COVID is you have to have the diagnosis of COVID. This gets a little tricky because many people weren’t diagnosed. The testing is not amazing. We still need to realize the testing we’re using has been approved for emergency use only. This is where it gets difficult.
If someone does not have a PCR positive or antibody positive or known exposure, they may still have Post-COVID Inflammatory Syndrome, but not know it.
We have to remember that for every 1 diagnosed case of COVID. There are about 6.5 people who got it, but did not get testing criteria or seek healthcare. These people can still get Long COVID, but not even know what’s going on because they didn’t even know they had COVID in the first place.
Long COVID Symptoms
There’s a whole host of symptoms that Long Hauler COVID patients deal with. These include (but are not limited to):
- Shortness of breath
- Palpitations and heart racing (all from just walking up a flight of stairs)
- Gut symptoms (diarrhea, nausea, slowing of stomach functions)
- Aches and pains
- Recurrent fevers
- Lymph node swelling
- Blood pressure fluctuations
- A whole slew of skin symptoms and rashes
- Skin flushing
In addition to the host of symptoms listed above, we’re also seeing a lot of psychological aspects attached to Long COVID.
Many patients are suffering from what appears to be some kind of PTSD or trauma-like effect where trigger events have them re-experience symptoms. Their brain goes in this fight or flight realm where they regress psychologically.
It’s a pretty profound symptom that I’ve observed in my own practice. I’m seeing a lot of these patients groups that have yet to me delineated in medical literature.
So, Where Do We Start?
To start to get to the bottom of this, we definitely need some kind of lab evaluation to see where the patient’s inflammation is at. Many of these patients will have a normal, critical lab evaluation with the standard labs.
According to the literature, as well a nice article from the BMJ, British Medical Journal, the labs we most urgently want to do are:
- A basic CBC comprehensive panel
- ESR or sub rate CRP
- BNP, or brain natriuretic, peptide
- Vitamin D
- Vitamin B12 folate
- Homocysteine level
These labs give us a general direction on how much direct inflammation the person has and will let us know if some basic nutritional deficiencies exist, as well. This is not a deep dive, but just a look to see if there any main things that need to be addressed as you start to address the patient’s symptoms.
The International Response to Long COVID
It’s really interesting to see how different states here in the U.S. and different countries around the world are responding to this Post-Pandemic Epidemic. The UK and Britain have been ahead of us anywhere from two to three, up to four months in addressing the needs of Long Haulers. They’re putting together clinics already.
However, most of the work coming out of the UK (and even a lot of the COVID clinics and academic institutions in the United States) is more symptom, diagnosis, and collection of data for research. They’re looking mainly at collecting symptoms to try and see if they can get databases for research and then figure out the next step.
This is helpful, but doesn’t address the patient’s who are already actively suffering from Long COVID.
What Needs to Happen
In the functional medicine world, we’ve been addressing Long COVID since last summer—and even some universities and medical systems like Eastern Virginia Medical School have been using integrative approaches in their care to treat Long Hauler patients.
But what we need to do is work together with primary care providers who will be seeing most of these patients. There are not enough functional medicine practitioners and integrated practitioners in the country to deal with the influx of Long COVID patients.
If you add both functional and integrated practitioners together, there might be maybe 2000 people in the country that are trained in this field. And that’s just not enough to care for the literally millions of patients that are going to be dealing with with Long COVID over the next two to three to six months to… we don’t quite know how long.
So that’s post COVID and long COVID explained and how we will need an integrative care approach to treating those who have been diagnosed with long COVID.
The next article, we’re going to talk about risk factors for COVID, how to address those and start thinking more individually—how can we make a personalized plan for each individual who has long COVID.