For the record: the experience of "mild to moderate" COVID-19, days 120 - 150
The Economic Politics of Treatment
My recent holter heart monitor results showed 19 incidences of tachycardia and one incident of bradycardia, and my doctor says this may be causing some of my symptoms. Her seeming reticence remains, however, to look at the results definitively within the context of COVID-19, and to clinically assess all of my symptoms together as a set -- a very telling set -- that thousands of people have already painstakingly described in their ongoing struggle with the disease (including infected medical professionals). Granted, my doctor is not privy to this wealth of information because it remains nestled within online support groups frequented only by those of us who have fallen ill. So, instead, this one set of (late) test results has been assessed on its own, as falling within the limits of 'normal', mainly because there is no clear indication of known heart disease(s). It is far from normal for ME, however. While it's reassuring that I don't present as having impending heart failure, it does still indicate something.
The fact remains that I do still have unusual heart behavior (albeit less and less as the weeks pass), though that behavior may not originate in the heart, as the cardiologist suggested. I've seen recent research that suggests that the thyroid can be temporarily inflamed by COVID and this may contribute to numerous issues that I've been experiencing, including the tachycardia (as well as palpitations, diarrhea, night sweats, memory problems, irritability, weight loss, etc). My doctor did suggest, the last time I saw her, that my thyroid could also be a culprit since my last blood work showed TSH levels bordering on hyperthyroidism (again, I have never had this before in my life). So, she is sending me for a fifth round of blood work to determine what my thyroid is doing over a longer period of time. Ultimately, she is doing what she can in the usual compartmentalized fashion of conventional medicine -- such response indicates that doctors in general still do not know how to (or are not willing to) interpret COVID symptoms as overall, multi-systemic disease with an identifiable chronic form. This may be about to change, however, as the CDC just officially acknowledged that COVID can cause long-term disability in those who were never hospitalized, and who are young and were previously healthy.
There is another aspect to this, though, I suspect. Health Canada has STILL not acknowledged chronic COVID symptoms, despite the open letter that was sent to provincial and federal health ministers asking that they acknowledge long-haul COVID. I can only loosely speculate that this has something to do with how Canada's healthcare system works -- it is predominantly publicly funded. If Health Canada acknowledges the possibility of long-term disability due to COVID post-viral complications, it may mean that taxpayer money then must be allocated to establish new recovery centres, as well as fund the long-term therapies and recovery times needed, for tens of thousands of people who are unable to return to work. At present, there is no funding for this new course of reality. It is possible that my doctor is working around these limitations to ensure that I can get the best long-term care possible, by treating me not within the COVID framework, but in the separate symptom sets of various possible disorders.
More on the Economic Impacts of HAVING COVID-19: Some Perspective
There is growing outrage and indignation in the world, surrounding any strict measures to attempt to control the spread of COVID-19: lockdown, social distancing, masks, etc. When you've lived (and greatly suffered) through COVID-19, such petulance from the masses strikes one as ludicrous, a product of childish entitlement, and an outrage all its own. Please, let me tell you a little bit about loss of freedom, first, and then loss of income/ opportunities.
Insurance scams, medications/ supplements, therapies out of pocket, inability to work, possible repayment of government emergency funding, and the list goes on. Being immobilized by a life-threatening disease is far more restrictive than any mandate to stay home or wear a mask. Immobilization by being infected by coronavirus and becoming stricken with COVID-19 looks like this: being confined to bed for weeks on end, leading to deconditioning of the heart, lungs, muscles, brain, etc, so that when you are eventually able to move out of bed, it is at a snail's pace for many weeks to come -- even in 'moderate' cases like mine. It means that all of your favourite outdoor activities, or even just walking, become a challenge to regain any momentum with.
But wait, it gets better. Being stuck in bed is not just a matter of dodging boredom by watching Netflix for hours and days on end and waiting for the illness to pass. It is not knowing if or when the illness will pass. It is days or weeks of rushing to the bathroom with diarrhea and nearly passing out from disregulated blood pressure (or even puking), in the process. It is severe discomfort in the body, as the nervous system breaks down via swelling in the brain and veins, lack of blood oxygen saturation, electrolyte imbalance/ dehydration, spinal, thyroid and heart inflammation and disregulation, etc. There is no stay-cation during full body inflammation. It is not just "the government" telling you to stay home, but doctors who don't want to deal with you unless you're dying on the spot.
And with this kind of confinement, nobody's really paying you to stay put, either. My son, who works as a summer student for the provincial government, half-complained that he was basically being paid to play video games at home instead of being out in the field doing what he loves. I felt bad for him, having to swallow the frustration of not knowing when he'd be able to live life as he's always known it. But greater than my sympathy was my relief, that he did not have the disease and I didn't have to worry about him becoming gravely ill or dying while I struggled to return to some semblance of vitality myself. During my personal battle, I tried not to worry too much about the fact that I was receiving what support the government was doling out through the employment insurance act, while not actually being, "ready, willing and able" to work. I still don't know what it will all mean in the end, in terms of possibly being expected to pay some of it back.
Currently, my therapy options are thinning out as my substantial annual medical insurance limits begin to be met. My osteopathy limits have been exceeded. My massage therapy limits have now been exceeded. Psychotherapy and physiotherapy have slightly higher limits, so I can stay with those for now, but my acupuncture is not covered at all. My insurance company, Sun Life, will only cover acupuncture performed by a 'physician' who specializes in acupuncture (as if that person commonly exists) but NOT a certified, registered acupuncturist. I found out that small caveat too late, after plunking close to $600 into crucial acupuncture treatments.
Recovery takes a team
My acupuncturist has been extremely proactive in treating my neurological symptoms. I asked him specifically to help with my nervous system(s) dysfunction. His approach included intense acupressure on my spine, and on my toe and finger joints, moving upwards a bit more each session, to wrists, ankles, elbows, shoulders. It was painful as hell on my left foot, but mildly enjoyable on my right foot (everything is worse on my left side). He also employed acupuncture to my peripheral nerves (hands/ forearms and feet/ lower legs), as well as moxibustion on my abdomen and back. In the first session, he effectively stabilized my heart rate at its normal (pre-COVID) resting rate. I was a bit astonished, given the intense tachycardia I'd been consistently suffering from. It stayed stable for a full week after that, only shooting up again when I upset the balance of my system by discontinuing Pepcid.
I stopped Pepcid cold turkey after he informed me that my liver was compromised (which my massage therapist confirmed), and then doing some follow up research of my own. He noted that I had developed seriously painful pressure points for liver. I noted that this distinctly coincided with taking Pepcid (famotidine) for five days. He also saw that my tongue was coated, another liver stress indicator. I unfortunately discovered, after the fact, that famotidine can cause hepatic injury even after just one week. Discontinuing Pepcid brought back some of my COVID symptoms again, like the tachycardia, muscle aches, spine pain, tiny heart pains, acid reflux, and major congestion in my ears and sinuses. But, after another acupuncture session or two, my heart rate re-stabilized again, for the most part...
I do still have the occasional spike in heart rate during deep sleep, my Fitbit tells me, which is not so much a concern since it isn't consistent, and I'm not having palpitations anymore. However, my oxygen saturation has continued to fluctuate to low levels within a range of concern. My doctor is following this, and suggesting a 24-hour sleep oximeter and other sleep analyses if it continues, though she doesn't imagine it could be sleep apnea since I don't fit the usual profile of an older, overweight male who snores. I will keep her informed of my Fitbit data, as it seems that evidence is helpful for clinical medical assessment. My Fitbit has continued to show that my blood oxygen levels are dropping during deep sleep at least once a week. I think it's dysautonomia-induced sleep apnea, personally, but she doesn't seem to register dysautonomia, much like many medical professionals. It is a silent, little understood syndrome.
What I need most is to be assessed for dysautonomia and other neurological damage. For example, pre-COVID, I used to be able to type in my computer password, and other passwords, correctly on the first go. Now it takes me 6 or 7 times to get it right, almost like I have mild dyslexia. Phantosmia has also continued unabated at present. I have been repeatedly awoken at night by smells that aren't really there, but that I perceive as real nonetheless: burning or baking bread, hot or burning plastic, burning rusty iron pans, wood/ paper smoke, hot engine smells, and recently, rotten garbage, sewage smells and solvent or other chemical smells. This suggests an issue around my olfactory system or a new manifestation of the many lingering neurological problems. At this point, my doctor has decided, upon advice from an Ear, Nose and Throat specialist, to send me for a brain MRI and nasal camera scope to investigate my olfactory bulb.
My osteopath remains the single most knowledgeable person in my recovery team. She re-positioned my wounded arm twice to alleviate some of the strain and pain from my bike fall, giving me back significant mobility. But, this is not the main reason why she is so amazing. Her true gift is her incredible knowledge of anatomy -- the skeletal, circulatory and nervous system and all connecting tendons, musculature and fascia that are interwoven between them. Not only this, but her quick witted synthesis of all this knowledge in applying it to my particular set of circumstances, to piece together the COVID puzzle that has plagued me.
She has helped me to understand that some of my heart, and especially lung, problems are likely connected to the neurological system that operates them. I've had consistent nerve pain in two spots that sit at the ends of my clavicles, close to where my arms connect to my shoulders. She explained to me that this major juncture of spinal nerves is connected to all thoracic function, including airways. Of particular interest, is that the T7 vertebrae controls lung function, and this is the vertabrae that I have an old fracture in and which was attacked by COVID. This has all been a revelation, and this explains continued breathing problems/ oxygen saturation that people like me have during recovery, despite the 'clear' lung x-rays, etc. It's fucking neurological -- the lung hardware is now fine but the software is glitchy! So what is next for me? I'm about to begin therapy with a neuro-physiotherapist, and I feel this will be the most important therapy going forward, for dealing with all the remaining problems.
My massage therapist is also focused on the nerves and muscles in the upper thoracic area to help with my remaining breathing issues, and has used percussive hand cupping on my back to help bring blood flow and oxygen to my lungs. I have a good physio regimen already to re-strengthen the muscles around the bones in my wounded arm, and have been starting to get back on my bike for the Great Cycle Challenge. I have to take it slow, though. Slow and easy. It's hard to remember that until I get knocked flat on my ass.
And I have gotten knocked on my ass a few times in my quest for a return to some kind of physical normalcy. I am definitely negotiating some kind of post-viral fatigue -- not on a daily basis, but if I push myself too hard. If I go for a strenuous hike two days in a row without a day of rest in between, I am physically and mentally exhausted to the extreme the next day. It is a deep exhaustion like I haven't known before, like a struggle to exist, and I feel utterly useless. If I don't push myself too hard, keep with low-key activities and rest in between, then I am OK, energy-wise. I try to keep my heart rate below 140 when exercising. This is still difficult to accept since I have always been full of energy and on the go. In some ways, I feel as if I've aged a decade because of this disease and I wonder if I will ever again know the free, spritely person I once was.
My sights ARE set on full resurrection from this creepy ailment, though.
The Body's Profound Ability to Heal
The Christ-like wounds on both my palms (from my recent bike wipe-out) obliterated the ends of my lifelines, at the heels of my palms. "Hey, Jesus!" my partner said, joking about the central scabs. My lifelines became nondescript, mangled by asphalt. I pondered if this could represent what coronavirus has done to me, ultimately. Shortened my life? Watching my hands slowly heal, however, has been strangely rewarding and comforting, simply in the observation that my body CAN heal, and is actively regenerating itself a little bit more each day. Using the knowledge that I've gained from some of my PhD research -- namely, that menstrual blood contains stem cells that enhance skin repair -- I applied my own to my wounds to see if I could speed up the process (the timing of my cycle was impeccable), conducting my own little experiment. It worked too well, fusing the flesh of my palms together just on either side of my lifelines, and I had to rip them back apart again, creating a brand new end-of-lifeline on each hand.
If I can see myself healing on the outside, then everything inside must be healing reliably as well -- my heart, lungs, veins, nerves, etc. Internally, I can feel my body healing. I keep getting pin prick sensations, for example -- like tiny things are biting me all over my arms and legs. I experienced this somewhat painful sensation for about 12 hours and then it stopped, coming back again days later, and I suspect it is peripheral nerve regeneration, as I have read that this can happen. These little pin prick sensations are likewise comforting (albeit annoying), similar to an acupuncture session, since they are accompanied by the awareness that my wholeness of self is being restored and that my damaged wires are getting a reboot.
Below is a list of some things I am currently using, which are helping quite a bit at this stage of the recovery journey.
Latest remedies on the kitchen island:
Milk thistle (tincture) for liver repair
Gingko biloba (tea) for cognitive support
Neuro-mega fish oil (capsules) for brain repair/ support - mackerel, sardine and anchovy with thyme and Vitamin E
Siberian Ginseng (tincture) for energy
Lion's mane mushroom (capsules) for nerve and brain support
SALT - lots of extra salt in my diet now (even more than mentioned in my last blog post), as recommended by Dysautonomia International.
Glucosamine sulphate - for my joint pain - this seems to be working much better than the MSM did.
Avamys steroidal nasal spray - this helps with ears, sinuses and throat but caused heart palpitations the first day I tried it - they have stopped now, though.
Also, contrast hydrotherapy -- simply alternating between hot and cold water in the shower to stimulate my nervous system, or following up a hot epsom salts bath with a brisk cold shower. I've noticed that over the past couple of weeks, my skin is now becoming conditioned to tolerate cold water much easier.
Vibration -- I've been using a Crave Vesper vibrator on my arms, legs, back and neck to also stimulate the nervous system.
I play Trivia Royale (a game app) on my phone to try to improve my memory and reaction times. It's a competitive trivia game against different players around the world. It seems to be helping, as my reaction times have definitely sped up over the past couple of weeks.
Neurology Treatment Techniques - where I discovered the benefits of vibration, etc.
Natural Treatments for Coronavirus - much of this reflects what I've done all along, with a few additional suggestions, all backed by evidence, of course.
More media advocacy and testimonials:
Recent news on research updates:
How COVID-19 Causes Loss of Smell - hope for recovery!