(I am not a doctor; this is not medical advice. I am just sharing information on what I have done myself, along with the support and knowledge of my doctor!)
My working theory on what is the underlying cause of our issues.
(This is just my thoughts and helps me to sort out how I address my health issues.)
Neural inflammation triggers a cascading reaction, which leads to Sickness Behavior. Sickness Behavior is what you do when you are sick so you can heal: Sleep, eat very little, cognition slows down, and otherwise hibernate. How can you tell your cat is really sick? He stops eating! That’s Sickness Behavior. The term actually originates with animal husbandry and veterinarians.
But after being sick, some people don’t get better, or are better for awhile before the post-infection symptoms manifest. In these cases, I think the immune system, the lymphatic system, and the glymphatic system (responsible for lymphatic movement in the brain) were barely keeping up with processing the debris and waste removal in the neural system. When the infection happens, or the person resumes to higher levels of activity too soon, it overwhelms the system, and the cascade leading to an unending illness feedback loop begins.
This cascade could be initiated by many different causes, but these are my top candidates:
- Pathogen Persistence (including Lyme!)
- Reactivation of a herpes-type virus
- Epstein-Barr (EBV)
- HSV-1 & -2
- Plenty of others!
- Activation of a HERV (Human Endogenous Retrovirus; they make up 10% of our genome!)
- Structural issues (more common with people who already have hypermobility and connective tissue issues.
- Cranio-Cervical Instability (CCI)
- Occult Tethered Cord
- Chiari Malformation
- Cerebrospinal Fluid leak (spontaneous or trauma caused) leading to the brain sagging down into the spinal canal like a sad jellyfish.
- Microbiome disruption
- Microclots, along with reperfusion injury once oxygen gets back into the tissues.
These could occur in isolation, but often there is more than one, and they can also cause the others, leading to the feedback loop.
The feedback loop cascade response symptoms (that I have had).
Not everyone has all of these symptoms, and others have some that I don’t have.
Fatigue and PEM (Post Exertional Malaise)
Extreme exhaustion, often including Brain Fog, and physically feeling weaker and heavier (like how you feel after swimming all day and finally climb out of the water.) Often this is mistaken for deconditioning, but on days when I don’t have PEM I am suddenly stronger and more capable. Doctors often think this is deconditioning, but as soon as we have the energy, we do ALL THE THINGS!
Exertion can be physical, cognitive, or emotional. One of my big triggers of it outside of those three is heat. If I get too hot, I will have a flare. Oh, and PEM can take 24 hours to a week to set in. Mine is about 36 hours, about the same as my DOMS window back when I lifted weights.
The most important action one can take to prevent and treat PEM is to do less! Stop, Rest, Pace!
This would be somewhere in the energy production and use within the cell. Are the mitochondria damaged? Starved of needed nutrients? Other? There are multiple theories out there, and probably all play some part. Overall, though, it seems that the Krebs Cycle is broken or otherwise limited, especially in the use of glucose. This could be due to the Sickness Behavior trigger, as ketones are more efficient and less inflammatory in healing, especially in the brain/neural system.
Lots of the micronutrients the mitochondria use to produce energy are also used by various pathogens, so locking these down to starve the pathogen out might be part of the body response, but this starves the mitochondria, too. And if whatever the body has identified as an invader (real or autoimmune response) doesn’t get cleared, the mitochondrial function will continue to deteriorate. This might be why it is often seen that people with MECFS seem to either get better within 3 years or have it lifelong (unless the underlying issue is addressed. Example: Jennifer Brea, of the Unrest documentary, is in remission!)
Mast Cell Activation Syndrome (MCAS)
This is one of the biggest ones to identify, and one of the easiest to initiate treatment as a patient, with or without doctor support. It is also one of the more escalating ones, especially as the sensitivities progress. I describe this as “allergies that aren’t allergies” as well as intestinal disruption. Everything moves too fast or too slow! It feels like you are always getting food poisoning, especially from leftovers or anything fermented. I can get full anaphylaxis if I eat enough garlic that I can taste it. Lower amounts and I just have intestinal disruption.
When mast cells degranulate, they release a lot of histamine. In MCAS, they are trigger-happy and release it from the slightest provocation, like getting a little bit embarrassed. Flushing is caused in large part by histamine, but in MCAS it is magnified. Often quite itchy everywhere, patients often show dermatographia, or “skin writing”, where the slightest scratch leaves a hive.
Sleep and anxiety issues in Long Covid can be caused by MCAS. Histamine is a stimulant, which is why antihistamines can make you sleepy. A common symptom is waking up at about 2AM, hot/sweaty, heart pounding, mind racing. That’s histamine! (We have a histamine dump around that time in our sleep cycle, and if you already have too much histamine it bumps you up too high.
For me, I was gasping and short of breath with very little exertion, but my pulse oximeter always said 95% or higher O2 saturation. The gasping and air hunger were likely hypoventilation, which was too much oxygen in the blood stream and too little CO2, which changes the PH of the blood, making it impossible to move oxygen into the cells. So the tissues are starved for oxygen, screaming for more, but the more you gasp, the worse the situation.
Turns out one of the reasons for this for me was Vocal Cord Dysfunction. My vocal cords would spasm partially closed when I exhaled. This could be part of the cause of what has been described as “Covid Strangle”. A specific type of speech therapy did help quite a bit!
Another reason for it could be whatever is causing PEM (I still get dyspnea when I am in PEM). This could be the mitochondrial issues, waste build up interfering with energy production, or maybe something else.
Breathing exercises (like those suggested by Wim Hoff) helped me. It was really interesting to see how my pulse oximeter would really change based on how PEM-y I was feeling.
My gut has not been “normal” for probably at least a decade. But with Covid, it really became extreme. I developed more and more sensitivities and had such constant problems. Despite not keeping much in my system long, it seemed, I was still putting on weight. That is actually because the body prioritizes calorie absorption above all else, and micronutrients may not get absorbed.
This disruption was caused by MCAS for me, so I had to really restrict my diet to find out what was the most triggering. Strangely, many people with it cannot have fermented foods, but those seem to be fine for me. Everyone is a bit different. I can’t have mushrooms, and there are only a few artificial sweeteners that don’t trigger the inflammation and speed of movement.
MCAS can really wreak havoc on the “good bacteria” in your gut, and then that leads to a lot of other problems, as those are critical for pulling the micronutrients out of food.
Postprandial heart rate increase and general malaise (feeling like crap)
After I ate, my heart rate would jump for 3 hours or so and I just generally felt awful. This is due largely to a intestinal secretion (incretin) called GIP (Glucose-dependent Insulinotropic Polypeptide). This is already getting too long, and I would spend way too much time talking about those theories. To sum up, this is found in Dysautonomia, like POTS (Postural Orthostatic Tachycardic Syndrome). Do you get dizzy in the shower or when you stand up? That’s probably POTS!
I found my diastolic blood pressure (the bottom number) would go up in these episodes, but not really the systolic. That is likely part of a cardiac response, similar to Heart Failure with Preserved Ejection Fraction (HFpEF).
There are more symptoms, but those are the big ones I’ve had.
How did I treat these issues?
Medicines and supplements (OTC and RX)
- H1 blocker – Fexofenadine (Allegra) twice daily
- H2 blocker – Famotidine (Pepcid) 20 mg twice daily
- H1 blocker – Cetirizine (Zyrtec) and noon and/or breakthrough MCAS reactions (itchy, brain fog)
- Mast cell stabilizer/blood thinner – Aspirin 82 mg once daily, then decreased to every other day
- It really made a difference on the brain fog!
- Montelukast – Leukotriene inhibitor, prescription only
- Tested for Folate, Ferritin, B12, and copper levels. Copper was a little bit on the low side, started taking it as a supplement. After two weeks I had my brain back! (These minerals are critical for aspects of mitochondrial function and are often “locked up” by the body systems and/or used up quickly.) Everyone can be a bit different on this one, definitely suggest getting the levels tested first! Lactoferrin is probably best if ferritin is low, but I am not an expert!
- Chondroitin Sulfate was a supplement I started to help stabilize my incretin balance (GIP vs GLP-1). The goal was to stabilize my postprandial heart rate and diastolic BP spikes. It took 8 weeks, but it was successful! There are a few other patients out there trying to expand on my n=1.
- D-ribose – a sugar that you use in your mitochondria. I would take it when I was dealing with postprandial heart rate issues and some lethargy. It helps quite a bit for those, but only if cells (like cardiac especially) are struggling to make enough. Other than that it is just a weird, faintly sweet substance to add to your coffee.
- Butyrate – a form of energy made in your lower gut and used throughout the body, even the brain. Note: be very careful not to brake the capsules open, or everything you touch will smell like stinky cheese!
- Low Dose Naltrexone (LDN) – Prescribed for different autoimmune conditions, like Fibromyalgia and MECFS.
- Nattokinase and Serrapeptase – This is a common pairing for treating microclots. I took them separately, as they might need to be titrated up for effectiveness, or down for tolerance. Natto breaks up the clots, and the serra mops up the resulting debris. Serra is also a mast cell stabilizer. I had to be careful in the beginning, and started the natto every other day due to the bruising issues I had with aspirin. Now I take both it and the serra twice daily, after gradually titrating up.
- NAD+ and Nicotinamide Riboside – This helped me quite a bit with overall energy and focus.
I had to go to the Keto Diet for hoping to develop mitochondrial repair. Turns out, it is actually pretty healthy for the brain, and a common diet for those with the postprandial heart issues, as sugar/carbs are common triggers. This was one of the treatments with the largest impact on my energy and MCAS stability (probably partly because of the food restrictions.)
Nicotine patches – still in the “test phase”, but WOW, it has made a difference!
I will add some links to some great resources tomorrow! Most of this is just what’s currently in my head after talking to others and treating myself.