October 5, 2022
From Michelle:
First of all, thanks for being here. Whether you donate or not, please know I'm deeply grateful you are taking the time to learn more about my lived experience. There are many facets and phases of illness and, in my case, my initial focus was on securing a competent medical team. Given the "relative newness" of Post-acute Sequelae of SARS-CoV-2, combined with my location in Central Oregon, it took quite a lot of time and effort.
I wouldn't have been able to write this (hopefully) cohesive synopsis of my journey a year ago. To say this has been the most difficult period of my life would be an understatement. Just when I think I have a steady anchor in the midst of all this, there is a medical setback. Learning to take the setbacks in stride and not let them dictate my emotional state is constant work. (I'll write more about setbacks in another update).
I'm finally supported by medical providers (near and far) who are knowledgeable and, equally important, curious. As some of you may (or may not) know, Long COVID is a diagnosis, but in reality it's an umbrella dx that merely provides the basis for other diagnoses, which are more specific to damage/dysfunction/dysbiosis in parts of the body. For clarity's sake, I'll list the diagnoses that resulted from damage caused by the spike protein:
--Hypoxemia (low blood oxygen) R09.02
--Endothelial damage I77.9
--Convergence insufficiency H51.11
--Deficient saccadic eye movements H55.81
--Small fiber neuropathy G90.09 (confirmed by skin punch biopsies in 3 sites - no false positives)
--Autonomic dysreflexia G90.04
--Mild cognitive impairment G31.84
--Tachycardia R00.0
--Pulmonary nodules R91.8 (I have seven pulmonary nodules and I was never a smoker).
I have other diagnoses that are co-morbidities: Autoimmune thyroiditis E06.3; Hereditary Alpha Tryptasemia D89.44. (a type of mast cell disorder confirmed by genetic test).
What this *what I* look/s like to an outsider is murky, that's why LC is lumped in with other so-called invisible illnesses (meaning the person often looks fine on the outside). In broad terms my body is (hopefully) recovering from endothelial damage within my vascular system --AND-- damage to my autonomic nervous system (i.e., the system that controls when you yawn, breathe, part of GI function, etc.). Fun fact: I didn't yawn for nearly a year (and now barely do, whereas pre-COVID, I yawned everyday). You may have heard that COVID is a vascular disease. One leading hypothesis is that there are micro clots in the blood of people with Long COVID. (see here: https://www.nature.com/articles/d41586-022-02286-7).
What this feels like (and it differs from day to day) is pain and numbness in my legs and face; headaches; episodes of pre-syncope; ocular motor dysfunction (that's the convergence & saccadic in dx list); memory and word-finding issues; inability to exert myself (both time + level of effort) due to poor oxygen transfer to the muscles, organs, and tissues; chest pain/pressure; POTS-like symptoms; internal tremors; external tremors; persistent disequilibrium; eustachian tube dysfunction; GI issues in the form of worsening of pre-COVID IBS-type symptoms. My doctors and physical/cognitive therapists say I present like a person with a traumatic brain injury (TBI) with the addition of the exertion-oxygenation issue. So many of my treatments align with treatment for TBI/post-concussion/post stroke. In regards to brain damage, the hope is that neuroplasticity will triumph and the damage can be mitigated by the creation of new neural pathways. (See Resources at end > Huberman Lab)
What I'm doing (i.e., what am I not doing?): Short of traveling to Germany for H.E.L.P. apheresis (heparin-induced extracorporeal LDL precipitation) a type of blood cleaning (it's not without risk and has mixed outcomes in treating Long COVID), I continue to follow the guidance of my medical team and seek modalities to support continued healing. I take a mixture of prescription meds and OTC supplements, which is regularly evolving. One hypothesis cites mast cell conditions as part of the Long COVID mix, so H1 + H2 blockers and mast-cell stabilizers are part of my regimen (Levocetirizine, Famotidine, Ketotifen (in capsule form) & Cromolyn Sodium). I also tried steroids and statins for a time (the idea was to reduce inflammation, nothing to do with cholesterol), but my liver enzymes have been elevated since May 2022, so I'm off steroid/statin and I titrated down the cromolyn sodium. Also, I eat very clean; no gluten, dairy, alcohol, and caffeine. I eat a lot of plants (trying!) and only eat sustainable/organic meat and fish. I've been focused on optimizing my gut microbiome (see resources at end for Huberman Lab podcast). I have a nutritionist and monitored my blood glucose for two weeks this fall, all in hopes of further optimizing my body's ability to heal itself. One of my doctors tested my hormones and neurotransmitters. My cortisol levels (over a 48-hr span) are very messed up. They are supposed to be high in the morning and decrease throughout the day, yet mine are flip-flopped. Interestingly, Yale immunologist, Dr. Akiko Iwasaki and team announced results of research showing low cortisol levels in people with Long COVID (https://www.medrxiv.org/content/10.1101/2022.08.09.22278592v1).
The slowness of the journey and the persistent uncertainty is a daily reckoning. No one gives you a road map with this illness. If you're lucky, you have a care team that is dedicated to seeing a way forward, which means resolution of the sinister aspects of Long COVID, particularly the vascular and oxygenation issues. If you're wondering why hematology isn't all over Long COVID, well, I'm just nodding my head and looking askance. The reality is that doctors can choose to stay in their "pre-COVID" lanes - regardless of speciality - or can choose to be curious about how COVID (spike protein) changed the physiological landscape in their areas of expertise.
Sadly, based on survey data (I'll share in another update) this illness has damaged relationships for many people with LC. Taking pause and owning where I am now and the tumultuous path to *here* has been difficult for me. All of this is a lot to handle, combined with the emotional stress on my family and the overall financial strain. To help with the emotional component, for the past several months I've been doing work with my therapist on nervous system regulation and also do acupuncture and yoga nidra. I've also learned some qi gong and breath work. Since late August, I've been able to go on short walks in nature, which is very restorative. Certain types of body work, especially lymphatic drainage, seem to move the dial, but in a more fleeting way. My sense is my body is responding to the healing work, but I still have a long way to go.
Being ill is expensive.
--Costs above and beyond health insurance coverage | I met my $1500 deductible in January 2022 and the out of pocket maximum of $6500 by the end of July 2022. We also pay for our own health insurance since my husband has his own business.
--Most of my Rx medications are compounded, so not covered by insurance. Unfortunately, many Rx contain fillers, like food dyes, corn starch, talc, etc., which can be detrimental, especially to a body already under immense stress. The monthly cost for my compounded meds is outside the insurance out of pocket and is approx. $300. Of course supplements (which are not a nice to have, but a need to have according to the entire care team) are not covered by insurance. A part of the Long COVID pathophysiology is metabolic dysfunction and, of course, immune system chaos, so the supplements address these aspects (I'll share my supplement protocol in another update).
--Travel for medical care | many providers are in Portland (nearly 3.5-4 hr drive). I've traveled to OHSU 4x in 2022 (for a cardiac MRI, autonomic nervous system testing, as well as to the OHSU Human Performance Lab to measure VO2 Max and an appointment with OHSU Neurology to establish care (since my neurologist in Bend indicated I should be in the care of a large teaching/research hospital).
--Compounding factor: I left my job in December 2021 and my doctors indicate I'm not capable of returning to the workplace at this time. See spoon theory: https://en.wikipedia.org/wiki/Spoon_theory. Another analogy is we only have a set number of matchsticks.
--All in all, we've spent more than $25k out of pocket on this illness thus far. In 2021 alone, according to our accountant we were just shy of accruing enough medical expenses to surpass the 2021 $25,100 standard deduction. I don't expect 2022 to be much different, maybe we'll exceed it this time.
Resources:
Huberman Lab - https://hubermanlab.com/how-to-enhance-your-gut-microbiome-for-brain-and-overall-health/
Andrew Huberman, Ph.D., is a neuroscientist and tenured Professor in the Department of Neurobiology at the Stanford University School of Medicine. He has made numerous significant contributions to the fields of brain development, brain function and neural plasticity, which is the ability of our nervous system to rewire and learn new behaviors, skills and cognitive functioning.
RTHM.com - https://rthm.com (private clinic w/Dr. Stuart Malcolm; founded by two Stanford researchers and a complex-illness MD)
Spoon theory: spoon theory: https://en.wikipedia.org/wiki/Spoon_theory.
Future updates:
--Setbacks
--Supplements
--Survey data
--V02 Max / Cardiopulmonary testing results from 10/11/22
XOXO Michelle
