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How I Healed From Long Covid

Let me start this post by telling you just how uncomfortable I am about making it at all. I know millions of people continue to suffer and die because of Long Covid, and I do not think I have any magic answers. I have posted some encouraging things on social media about how, 20 months after first contracting covid-19, I am finally feeling back to (mostly) normal. I did this to give people hope. At my sickest with this illness I wanted to die. I needed hope. I thought about ending my life every day for more than a year, because the pain was that horrific and unrelenting.


Every time I post about being better now, I get a flood of direct messages and comments from people with Long Covid asking me how I did it. So I am posting this here, for those who want to know. This is in no way, shape or form me saying I know how to cure anyone else of this horrible disease. Long Covid manifests in endless ways, and seems to be different for everyone. What worked for me might not work for anyone else. I am not telling you what to do, and I encourage you to consult with a health care professional before doing anything new or different. I cannot be held responsible for anyone's choices but my own.


I'd also like to say that I am not posting this to invite argument from anyone. I am aware that many of you will take issue with what I am about to say, and you'll want to rage at me and fight with me. I am not going to engage in anything stressful. I am not here to convince you of anything. I am not interested in being convinced of anything, either. I am sharing what I did to get better. That's it. It is not open to debate, because it is a description of things I have done or am doing, that have nothing whatsoever to do with anyone else. If you don't like my approach, that's fine. Just don't expect your hostile comments or outrage to find approval for comments on my website. I will not respond to you on social media, either. I will probably block you, as part of my healing.


First, a quick recap of my Long Covid journey. I was first infected in March 2020. The acute phase was hellish. First symptoms were dripping-faucet nose; altered sense of smell; chills so severe they felt more like seizures; shortness of breath; lowered oxygen (93% from 99% but could not get supplemental oxygen); tachycardia; hypnic jerks/myoclonous every time I tried to sleep; hallucinations; insomnia; complete loss of appetite resulting in 30-pound weight loss; endless diarrhea that started bright yellow, progressed to green, and eventually went beige and white as my liver failed; severe abdominal pain; blood in my urine; a period after 4 years of menopause; constant sense of something stuck in my throat, with throat clearing; pain in sternum and chest; upper back pain between my shoulder blades; agitation and depression; adrenaline surges awake and asleep; mouth sores; swollen tongue; red eyes; changed vision; high temperature then low temperature. My gallbladder died. Literally died in my body and had to be removed in an emergency surgery. Swollen blood vessels everywhere; skin peeling off; livedo on legs and palms; inability to exercise without heart palpitations and dizziness; hair loss; weird blisters in my armpits; tingling and numbness in my limbs; tingling in my scalp and temples that felt like worms crawling on my head for a year; blood so thick it had to be suctioned from my arm and clotted immediately in the tube - looked like chocolate pudding; constant low-grade fever; burning pain in my chest and upper back that I could only describe as devil's wings unfolding in my torso; skin that wrinkled and dried up like I'd aged 20 years overnight; bleeding skin, eyes, gums. In all, I tracked 107 distinct symptoms for more than a year, and found very little help from doctors. There was evidence of changes to my brain on MRI but they attributed this to "normal aging" even though a head MRI from one year earlier showed no such thing.


I finally began to recover after about a year. Then I got vaccinated and after dose 2 of the Pfizer vaccine I became paralyzed and could not walk; I also developed myocarditis and suddenly had irregular EKGs that no doctor seemed all that concerned about. The chest pain after the vaccine was terrifying. After three months those symptoms resolved and I trusted the CDC about being safe from delta and safe to have meetings with other vaccinated people indoors. That's how I got delta the first time I went anywhere in more than a year. All the old symptoms were back, only this time the fever was higher. I was sick for six weeks. Because I'd used up all my savings supporting me and my son (also a longhauler) I needed to find work. My first job interview, double masked with N95s at a school where many teachers and kids were unmasked, resulted in a THIRD infection, August 24, 2021. This lasted another month, a month of pure hell in which I was sure I would finally die.


Since the end of September I have been feeling much better. Like most people with Long Covid or ME/CFS I have had ups and downs, but I can securely say the ups are lasting longer and going higher and the downs are fewer and shorter in duration. All the way through, I have been using my reporting skills to keep up with the latest research, and, in the absence of any real treatment from the medical establishment, I have cobbled together a treatment plan for myself that has 7 main components. They are as follows.


Oh. I also take the usual supplements everyone recommends in the online Long Covid groups: Quercetin, aspirin, resveratrol, magnesium, Nuun electrolytes, green tea, curcumin, zyrtec, pepcid, b-complex, folic acid, vitamin D (megadoses). I also take a Chinese herb shown to control autoimmune diseases, called Thunder God Vine, and another herb, Red Yeast Rice, as a natural statin. As for foods - nothing processed. I buy only single-ingredient foods wherever possible.


  1. Endothelial preservation and support

  2. Microbiome rebuilding for the gut and elsewhere

  3. Lower my histamine levels

  4. Neurological rehabilitation

  5. Pacing

  6. Trees

  7. Spiritual (Buddhist, in my case) practice


ENDOTHELIAL PRESERVATION AND SUPPORT


The medical establishment and news media wrongly presumed that SARS-COV-2 was a respiratory-only disease at the outset. They even gave the virus a whopper of a misnomer - Severe Acute RESPIRATORY Syndrome, which was a massive error. As information came flooding in about how the virus actually attacks the entire body, using neurological and vascular pathways to injure any and all organ systems, the only backtracking the establishment did was to start saying "though it is primarily a respiratory disease it sometimes yadda yadda yadda." This still isn't good enough, but once you name something incorrectly it is almost impossible to convince the public of anything else - propaganda 101. Tell a lie often enough and long enough and it becomes what people believe is true.


But it doesn't matter, in the end, what people THINK is true about this virus. The virus is not going to adhere to the stupid name humans gave it. It is going to do what it does - which is, attack the entire body. The blood vessels take a massive hit. Whether this is because of direct viral infection or autoantibodies seems to be unresolved so far. But what I knew was I needed to figure out how to do the least additional oxidative damage to my already injured vascular system (the endothelial lining of your blood vessels, if laid out flat, would be roughly 60,000 miles).


So I cut out foods and drinks that cause endothelial damage. Sugar is the biggest one.

Sugar is always poison, but if you have Long Covid, it is going to be the number one reason you relapse.

I don't get cheat days. I can't just have a little. If I do, it is relapse city. It needs to go the fuck away, forever.


The sharp shape of sugar molecules literally rips into the endothelium. Think of it as you, swallowing a billion tiny knives. Yum.


More than once I have seen posts from people despairing over their Long Covid, with photos of them eating sugary bullshit. One mother posted a photo of her dismal Long Covid teen in the hospital, nursing a massive Dr. Pepper. I begged her to stop poisoning her child. Stop thinking of sugar as a "reward." It is a death sentence.


I have lost all patience for people who cry about Long Covid yet continue to poison themselves with trash food. Oh, and for our purposes, "sugar" also includes any alcohol, white flours, white grains, excessive fructose from fruit, honey, etc. If I have to have something sweet, use Monkfruit sweetener. Monkfruit sweetener is a good substitute, but too much of it causes more delightful diarrhea. I have found it easier to just stop eating sweet stuff. When I do that for a while, soon things like carrots begin to taste like candy.


So that's what NOT to do for the endothelium. To support endothelial function I load up on leafy greens, and polyphenols. My entire idea of lunch has changed. Gone are the sandwiches. Now I put two hearts of organic romaine lettuce in a blender with some water, a green apple, cucumber, kale, and lemon juice. Sometimes I'll toss in half a beet - not too much, as beets are high in sugar. But basically if it sticks to the blender, it's not a good choice.


I try to have mostly low-starch vegetables at every meal. Arugula, watercress, radishes, dandelion greens. I'm careful with my veggie choices, to avoid those that cause histamine levels to rise.


I encourage you to do more research and reading on your own, about how to support and heal your endothelium. Start here.


MICROBIOME REBUILDING


Tons of research shows that people with Long Covid have drastically altered microbiomes. A microbiome is the population of bacteria living in and on your body. Most of the cells in and on a human body are not our own, but bacteria. These microbes interact with our bodies in millions of ways, some of them understood and others not so much. Among their many jobs, bacteria control our inflammation and immune responses. When the microbiome gets out of whack, so can those processes. Whether the microbiome is altered by the virus itself or by the immune system, it can continue to cause problems unless the bad bacteria that flourish with covid are gotten under control again, and the good bacteria that all but die out with covid are supported to flourish again.


This is not a mere matter of taking some store-bough probiotic, though that won't hurt, provided it doesn't come with added sugar and dairy. I should mention here that cow dairy is a very bad idea. It always causes a relapse for me. There is no real reason for humans to suckle on cows, so this makes sense. It was probably always problematic but in my weakened state that just seems more obvious now. Anyway, I don't get prebiotics and probiotics from yogurt - and definitely not sweetened bullshit non-organic highly processed yogurt. I get them from pills, but also from food. The good bacteria we want to support like veggies, and specifically love yellow kiwi, jerusalem artichokes, asparagus, sweet potato.


For a while, I cut out all lectins, because there seemed to be some leaky gut stuff going on. I am back to being able to eat beans and, sometimes, tomatoes. I listen to my body all the time, though. It can be a day to day thing.


Two things I specifically did seemed to heal my gut a great deal. One, I went mostly plant based. I only eat meat once a week now, and it is always local, organic, grass-fed, and I make sure to eat organ meats when I can - liver being the best. Two, I go to remote wild places in the mountains and sit in the forest. I touch the forest floor with my hands, and then I touch my lips and nose. This probably sounds crazy to some of you, but humans are not separate from the ecosystem in which we live. We evolved to get dirty, in a good way. Our lives are far too sanitized now, and our microbiomes suffer for it. There is tons of research about the benefits of a little healthy topsoil on our microbiome. At least three times a week I drive an hour or more to the forest, and I legit just sit under ponderosa pine trees, playing in the fucking dirt like a little kid. I will also pick juniper berries and eat them right from the trees.


This podcast is pure gold for microbiome and endothelial advice in Long Covid.


LOWER HISTAMINE LEVELS


Long Covid is not my first post-viral chronic illness. After a flu back in 2005 I got similarly sick, for two years. Part of that sickness was extreme mast cell activation - hives, anaphylaxis, itching, dermagraphia. I had it all. I have a genetic predisposition to histamine issues, and my body has a hard time clearing it. I suspect this is the case for many longhaulers.


I take Zyrtec and Pepcid daily. These are H1 and H2 blockers. With Covid the histamine issues seem relegated mostly to my esophagus and digestive tract. When I eat high-histamine foods now, my belly bloats like I'm 8 months pregnant, gets hard as a bowling ball. It's horrible. I also find my shortness of breath is related to histamine and esophagus issues. Covid attacked my esophagus more than any other body part.


I follow a low-histamine diet. This means saying no to a lot of foods that are otherwise good for you, like spinach and avocados. Cross-referencing all the dietary restrictions of Long Covid has been like trying to find a hidden treasure with seventeen ancient maps. It can be done, though. The thing I've most hated giving up is balsamic vinegar on salads. Lemon juice works as a substitute for me, but might cause histamine issues in someone else.


Most fermented foods are off-limits because of high histamine levels. One exception is traditionally made Kimchi. It actually lowers histamine for me, and others. Again, case by case basis.


NEUROLOGICAL REHABILITATION


Because the medical system in the United States is a giant pile of steaming turds, I have not been "approved" for actual neurological rehab, though I needed it. So I researched it and came up with my own strategies. Basically, Long Covid can leave you with a damaged brain. People with Long Covid are improving with rehab designed for stroke and head injurty victims. So, I do what I can. I wash dishes and brush my teeth with my non-dominant hand. I am studying Swedish and Navajo. I dance, to music, because people who do have healthier brains. When I felt the coordination slipping in my legs, as a lifelong dance teacher, I was mortified. So I started dancing, every single day. I know lots of us can't get out of bed. I would dance in bed. Even if it was just wiggling my toes in time to the music. There is something about the anticipation of beats, and synchronizing motions to rhythm, that is healing to the brain, in my opinion.


I also hike. Walking on sidewalks is fine. But getting onto rocky terrain where I have to be vigilant and constantly monitoring the terrain is better. The reason EMDR and tapping work to reduce trauma responses in the brain is that the eyes or senses are moving back and forth from side to side, the way our eyes do when we are moving through unfamiliar natural terrain. And when climbing on the trail, I consciously use my non-dominant foot to lead. I also listen to music and try to walk in time to the beats. Sometimes, I dance on the trail.


My vagus nerve was damaged by covid-19. So I do things to improve it. At the end of my shower I turn the water to freezing cold, and stand there as I long as I can tolerate it. I sing. I gargle. And, as you will see in this next section, I meditate.


PACING


This seems self-explanatory. I have figured out what the limits are on my ability to exercise, work, or deal with stress before relapsing. I work within those limits, even if I feel like I could do more. This means being cool with letting lots of things go, including friends, chores, or really anything that gets in the way of healing.


TREES


I am highly intuitive, and from the start of this thing felt called to the forest. I live in a city at the foot of the southern Rocky Mountains, about an hour from unspoiled national forests. At my sickest, I would drive to the forest and drag myself a few feet, to sit among trees for hours. I did not know why, then. Now I know. It was the phytoncides. Trees release chemicals that lower blood pressure and improve insulin resistance. In Japan, doctors routinely prescribe "forest bathing" to sick people. The trees have healed me. I know this is true. I don't think trees in parks are the same. These are wild, self-determined trees, in thriving ecosystems.


SPIRITUAL PRACTICE


This will be the most controversial part of what I post here today. If you are a militant materialist and atheist, you probably want to stop reading now. I for sure don't want to hear from you about anything I have to say. Have a great day.


Okay. quick background here. I was raised by a Marxist atheist and until I died in 2015 was prone to ridiculing anyone with spiritual beliefs. Then I died, for a while, and was revived, and was in a coma, then came back. When I died, I definitely left my body and went somewhere else, and there were absolutely two spiritual being there with me. They were nothing like spiritual beings are portrayed in pop culture. They were hilarious. It was an incredible experience that I will not detail here beyond what I've said. I do believe in an afterlife. I do not believe any organized religion fully understands or captures what the spirit and soul are, but I also know that our thought forms create whatever we will see in those early moments of death, and that everyone is right about their own afterlife, and wrong about everyone else's.


When I died in 2015 I killed myself. I did that because, unbeknownst to me at the time, I had a mental illness that is caused by extreme abuse and neglect in childhood. The trauma I endured, I learned once I came back to my body and was diagnosed and treated, rewired my limbic system. It made me feel pain more than was normal. It made me unable to regulate strong negative emotion on my own. It made life HURT. I was the person everyone thought was always overreacting, because my brain was overreacting. The therapy I did for this disorder was called Dialectical Behavior Therapy, and its roots are in Buddhist mindfulness meditation practices. The two years I spent in DBT were harder than getting my master's from Columbia. Through diligent, hard work, I was able to LITERALLY rewire my damaged brain, to the point that I could finally have "normal" emotional responses and a joyful life worth living.


When Long Covid struck, I began to suspect that the trauma I'd endured that damaged my amygdala and limbic system did not just cause overreaction in my emotional responses, but perhaps also my immune response. I felt this intuitively, that my cells were acting out against the trauma and pain of covid the way my emotion mind had reacted to breakups or disappointments. It felt the same, but different. I looked into this idea, and sure enough found that there is a direct relationship between Adverse Childhood Experiences and all physical diseases and illnesses. Traumatized children grow up to be far more likely to get sick and die of those illness than children who are not abused, and this is not all related only to lifestyle choices. Being traumatized primes to fight-or-flight system to be hypervigilant, as a protective mechanism. This is autonomic, and subconscious. When exposed to any sort of trauma from then on, including a horrific virus, the trauma-wired brain will overreact, overcompensate, panic, and the person can remain sick longer than others.


This has been misinterpreted, at least from what I've seen of it, by many scared, angry, hurting people with Long Covid. They think this is saying the illness is imaginary. But that is not what I'm saying at all. The illness is real. It is physical. Trauma wiring is PHYSICAL. The electrical pathways tunneled into our survival brains as children is as real as the brand burned into the flank of a calf on a ranch. Unfortunately, many people who have trauma wiring are also on high alert for anything that feels like unjust blaming, and will get very angry if they feel insulted or demeaned. I have seen many in the obsessive Long Covid communities online grow FURIOUS at the idea that there is any mind-body connection at all, because to them this feels like an invalidation of their very real physical symptoms. I also have little doubt that many doctors DO think Long Covid is imaginary, and they can go fuck themselves.


Anyway. In my case, I knew from the past work I'd done to rewire my autonomic emotional reactions that I probably needed to do something similar to get my immune system to stop attacking me. I do not think this is 100% of what's going on with Long Covid, but I do think in my case it had a huge role to play. For instance, I am able to lower my low-grade Long Covid temperature by meditating on feeling loved. I visualize the Mother Mary (sue me, my mother is Catholic, I use what works) holding me and looking at me with all the love in the world. My temperature after ten minutes of this has dropped as much as two degrees F. I have seen other people talk about how they can get a fever just from a Zoom call now. That's not a virus. That's a stress response, an overreaction in the limbic system.


The trouble with trauma wiring is that merely KNOWING about it does not change it. It isn't like talk therapy. You have to bear down and do some very, very hard work to begin changing the way your brain is wired. For me, this has meant NOT indulging in painful, stressful things. That's hard, when you are close to dying. When you are in the worst pain of your life. It is natural to PANIC when you feel like your life is ending and no one is listening to you. It is tempting and even addicting to constantly search for solutions online in Long Covid communities, and I know that for a time I did that. It only made me more afraid, and sicker. So I began to limit the amount of time I could spend indulging in that kind of thing. Ten minutes a day. No more than that.


I want to be clear about something here. I am not saying to "think positive(ly)" AT ALL. In fact, as a Buddhist I would say this instead. Think realistically, but do not despair in reality. Buddhists believe that pain and loss are inevitable parts of life for all living things, but suffering is optional. Suffering occurs when we actively RESIST pain and loss that we are helpless to actually change. Being dumped by someone you love is painful. But begging them to come back, beating yourself up for ruining things, all of that is unnecessary and takes pain to the terrible realm of SUFFERING. Long Covid is real. It is painful. But being ANGRY that you have it, being FURIOUS that your doctors are gaslighting you, being COMBATIVE with people whose minds you will and can never change - that is all going to take the pain of this illness and turn it into suffering. I am not saying we don't need activists, but I am saying that for some of us, taking on a crusade, being outraged on social media all day long, feeding our worst fears, will make the illness worse.


For me, healing began in earnest when I finally made peace with the disease and with the possibility of dying. Buddhists have a death meditation, that to westerners would seem morbid. But the radical acceptance of one's own impending death is a clarion call to LIVE. If you are fearing death, resisting it, being pissed off about it, if you have a disease like Long Covid, it's a bit like running from a hungry mountain lion. The running itself invites attack. It is counter-intuitive, but I believe you cannot begin to heal until you accept, with loving kindness, that you are sick, without being angry about it. Continuing to despair over who you used to be and all the things you used to be able to do is NOT HELPING YOU. It makes you sicker because it triggers the trauma circuitry.


I remember the day I chanced my outlook. I could not even walk around the block anymore. I had been a trailrunner and dancer before this. So I asked myself to stop thinking about the past. It's gone and not coming back. And I asked myself, "If you were born right now, today, into this body, exactly as it is, what would you find that was interesting or worthwhile?" And I realized I could still see colors. I could feel the sun. I could bury my fingers in my cat's soft fur. I challenged myself to find the BEAUTY instead of the TRAGEDY in my situation. I did not do this with the aim of getting "better." I did this with the aim of finding joy and beauty in whatever life I had left. I radically accepted my situation, with no struggle against it, with no expectation or attachment to a better outcome, with no need for doctors to listen or care, with no anger. It was what it was, and I was like this now, so how could this little time I had left not be wasted?


To my great surprise, the more I did this, the more I opened my arms to the illness, the better I began to feel. There is a Buddhist story about how the Buddha saw Mara, his nemesis, lurking around hoping to hurt him. The Buddha did not respond by getting angry and fighting. He invited Mara to tea. That's what I try to do. I feel the pain, and accept that it is there, and then I move on.


Now. All of this said, I am better, but not what I was before the tsunami of Covid-19 and Long Covid. I have what might be permanent damage. But I am able to live a fairly normal life again, at the moment, and have been this way for two straight months. I might have gotten better anyway. I don't know. And I don't know if my methods will help anyone else. There are people in far worse shape than I was in. People who can't walk, people having endless seizures. I mean no disrespect to anyone. This is just my story, and I am fully aware it could change for the worse again at any time. I could get infected again, and die this time. But I do feel comforted in knowing that I can and will endure whatever is endurable, and that if I need to die, I will die, and that death is not the end.

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