TL;DR – here’s some research that I’ve learned about long COVID, that your PCP or ER doctor doesn’t know. I wanted to share some best practices that I’ve seen. I, like everyone else, am still trying to figure this out, and often feel like I am all by myself trying to figure that out. An excellent article talking about this issue is from the NY Times.
I first want to say that I’m not a doctor.
But, I am a social scientist – which doesn’t mean a whole lot other than I know how to research and quantify/qualify sources of information based on the information presented – I also know how to read a research study and understand it’s findings and evaluate biases and scope.
I’ve had Long COVID (LC) since November 2021.
I finally feel like I’ve found the thing that made me feel better (and by that I mean, I don’t think I’ve actually solved anything except a major depressive symptom of my own). What worked for me was a result of having low Vitamin B12 levels. My iron was also low and much to be desired. I’m still exploring this one, as I know it’s not good to have too much Iron. Another woman shared this same story.
My LC symptoms look like a constellation of issues and various diseases. They include or included:
- Extreme Fatigue
- Dizziness
- Lightheadedness
- Brain Fog (Best description I’ve heard is that it’s like a cotton ball in your head)
- Headache
- Chest Pain
- Heart Palpitations
- Extreme Heart Rate Variability
- Forgetting words or having difficulty finishing a thought
- Pulsations/Tremors in all of my muscles, but especially from my diaphragm
- Anxiety
- Inability to Sleep / Sleep Well (insomnia)
Much to my dismay, every day feels like a different day. Which is good and bad. Because there are days that are definite bad days, and I don’t want to do anything. But there are good days as well. A good day looks like I don’t feel like I’m going to pass out. The average day for me feels like I’m teetering on the edge, where I’m feeling functional most of the day until about 2 or 3, and then around that time, I’m looking for somewhere to lay down for the rest of the day.
What have my doctors said? Much to the dismay of many LC individuals, I’ve been told everything from doctors being concerned that I’m having a heart attack, a stroke or something in between – but then, after every test is completed, nothing. You appear to be physiologically fine. Follow up with your PCP.
Needless to say, this is a hard thing for anyone to go through, especially LC patients. We are constantly examined under a microscope by friends, family and coworkers that what we are going through is apparently exaggerated or made up. I can tell you confidently that is not the case, and there is help for you in this arena, if you want to reach out. I joined the Long COVID support group on Facebook, and it was such a relief to know that I was not alone, much like sufferers of any other mysterious disease. It was also a relief to see that the US Department of Health Human Services and US Department of Justice released joint guidance on LC being a Disability under the ADA. President Biden also announced yesterday that he is wanting the federal government to look into this more.
There is hope.
Here are some of the things that I’ve read through, that I think are interesting conversation starters with your doctor, if you have LC:
- Long COVID may be stuck in your small intestine, in addition to circulation in several other systems.
- Long COVID mimics other viruses, diseases and parasites that cross the blood-brain barrier, which include Epstein-Barr Virus, Toxoplasmosis, Cytomegalovirus, Tape Worms, Vitamin B12 and/or Iron Deficiency, POTS, etc….
Here are some things that you should ask your doctor should rule out for you:
- Vitamin Deficiency (B12, Folate, Iron & Ferritin)
- Blood-Brain Barrier reactivated viruses/diseases/parasites
- Glutathione (GSH) levels
All of these things are way cheaper than going to the ER 5 or 6 times like I went, and 100% more productive as well, unless they are also up to date on the research being conducted. I’ve also seen some research in several other areas and treatments that may help as well, including:
- Enhanced External Counter Pulsation treatment for those who are experiencing cardiac / respiratory symptoms of LC. (I never fully explored this, but did find a clinic 2 hours away from me that has this; not a standard treatment)
- Oregano Oil (which is dangerous to take long term with it’s antibiotic / antibiotic / ant parasitic properties) (Helped me some, but not all the way)
- L-Arginine / L-Citrulline as standard therapy (This has helped me some, but not all the way)
- Exercise may or may not help
The fight to the finish is obviously a group one – here are other articles sharing the same insight here from my own experience:
- https://experiencelife.lifetime.life/article/how-to-treat-long-haul-covid/
- https://orthomolecular.activehosted.com/index.php?action=social&chash=6f3ef77ac0e3619e98159e9b6febf557.213&s=6039e875e9433b4654d216aca2c64d85
- https://www.youtube.com/watch?v=-8pIW06vpko (Vagus Nerve)
Wherever you are in this fight, you’re not alone.
I’m still in this fight myself, and continue to look for answers; but I wanted to share that Vitamin B12 has been the only thing that has shown the most dramatic effect on helping me through my current symptoms, and while I know it won’t help everyone, maybe it will help you too – but as always, you should talk with your doctor to check your levels before taking any supplements. (As a complete side note, my sleep has also dramatically improved, due to the relationship between B12 and natural melatonin)
(My working theory for myself at this moment is that COVID is hanging out in my small intestine and blocking micronutrient absorption (much like a parasite))
I’ll post more, as I learn more or go through more myself. 🙂
Here is my current regimen:
- Claritin 10mg twice a day
- B12 (methylcobamalin and hydrocobalamin in one) 750-1000mcg (Taken in 250mcg doses 3-4 times a day, but never after 6pm)
- Quercetin (on bad days, on and off schedule)
- Vitamin C + Acerola 500mg (waning this one down)
- Ashwaghanda once a day
- Ancient Probiotics (just added prebiotics due to bloating)
- Grape Seed Extract
- Magnesium
- Small Multivitamin
- PepZinGI
- Occaisional Fish Oil and Turmeric
- Nightly two tea bags of chamomile tea
- I also use Apollo Nuero to sleep – surprisingly very effective and necessary on high-stress days.