The Long Haul
Well, well, well.
Recent studies are beginning to show mitochondrial dysfunction to be a possible cause of long-haul COVID symptoms. Articles have quoted doctors saying “We can’t treat separate parts anymore, we need to look at the patient as a whole person.”
YOU DON’T SAY!
Sorry if I seem a little hostile, but these recent developments are nothing short of vindicating. As someone who was a “long-hauler” before COVID existed (I’ll explain later), traditional medicine failed me in more ways than I can count. I found answers and support in functional medicine, whose mantra is to “look under the hood” to see how the systems of the body are co-existing and where support or correction might be needed. Optimizing mitochondrial function is one of the cornerstones of functional medicine treatment, as where the mitochondria go, the body follows. And suffice it to say that “whole person” and “mitochondria” were terms that never came up at medical appointments when I was riddled with debilitating symptoms, but words like “anxiety” and “psychosomatic” did.
My “long-haul” journey began in 2009, about 10 years before the rest of the world began to experience long-COVID. I had “normal” symptoms develop, such as asthma and congestion. But it was the weird symptoms that freaked me out. I began having dizzy spells lasting days, weeks, and months. I felt unsteady and disoriented, as if I just got off a boat. Sometimes my legs felt detached when walking. And I often felt unreal, removed, and foggy. Getting through days with three small children was challenging, and all the while I thought I was dying. There was no precedent, no diagnosis to explain what I was experiencing. Not that I didn’t try to find out. I went to several doctors, only to be told that my CBC panel was normal, but I should consider nasal spray and anti-depressants. I went to each of these visits with high hopes, and often left completely dejected if not in tears. Here are a few highlights of my encounters with doctors:
I was explaining the series of events to an ENT, who said “Are you going to tell me your symptoms or give me your self-diagnosis?” He also said my ears looked fine, despite my dizziness. I mentioned that my general practitioner had seen fluid in my ears, and he said “Who are you going to believe, him or me?” And did I mention, this guy was brash, cold and intimidating?
Another doctor said he wanted to do surgery on my face. “How will it help my dizziness?” I asked. A valid question, right? “I’ve already spent too much time in here, other patients are waiting. Karen will get you on the surgery schedule.” Needless to say, I was not going to let that guy anywhere near me with a knife.
I went to a doctor who suggested my issues were trauma-related, and that I really did not want to feel better. “I am seeing a therapist about my fight-or-flight,” I told him. “Well, you have to want it to work,” he responded. What?????
The list goes on. My symptoms were not textbook, so no one knew how to deal with me. When they couldn’t help, they instead turned the tables and dismissed me as a needy, demanding nut job looking for attention. And with what I was dealing with physically and mentally, I absolutely did not need this kind of “care” or lack thereof.
I muddled through until things came to a head in summer 2017, when my symptoms became so debilitating that I barely left the house. Extreme dizziness, headaches, nausea, and fatigue flattened me. I lost 20 pounds and went from doctor to doctor seeking help. I tried all kinds of treatments, including SSRIs, IVs, you name it, desperate for any kind of hope or relief. I avoided everyone, not wanting to explain my inability to participate in day-to-day activities. If doctors dismissed me as a loon, I could only imagine what my friends and family would think. My Pinterest board from around this time really tells the story...lots of inspirational quotes about journeys and their purpose, resilience, and staying hopeful. I was really trying, and hoping every day I woke up that THIS would be the day that things started to improve.
It was in December 2017 that a functional medicine doctor suggested mold exposure, which was 100% the root cause of my symptoms. Labs and a home inspection revealed a very big problem. All I could think was “I am not crazy. I am sick. I am NOT crazy!” At a cost of $30,000, the mold was removed from my home, and I was on the road to recovery.
Unfortunately, the road to recovery was long and winding. This is where the mitochondrial dysfunction comes in. Mold has been shown to extensively damage the mitochondria, which are known as the “powerhouses of the cell.” (They help take energy from our food and convert it into energy we can use.) Poor mitochondrial function affects nearly every system of the body, and would definitely explain why my body struggled in the recovery process. It takes time and consistency to rebuild.
My immune system was another issue. I likely had some form of POTS (Postural Orthostatic Tachycardia Syndrome) for a few years after mold exposure as I often felt like I was going to pass out. It was either POTS or continued vestibular symptoms…either way, it was disturbing to be out in public feeling like I could black out at any time. I was constantly getting sick; if someone sneezed within a 25-mile radius, I caught their bug. (Only a slight exaggeration.) On the flip side, my allergies were over-the-top, leading to unbearable dizziness and earaches. And I was still exhausted. I tried to work full-time and keep up with the needs of my family of five, but sometimes, my body just gave out. I had to accept that after all it had been through, it was not going to recover overnight.
This is the juxtaposition of chronic illness; you want to fight, to deny, to believe that you are a pill, a treatment, or a day away from being “fine.” And you have to have some “fight” in you to get better. But I have found that acceptance goes a long way. These are the cards I was dealt. I try to mitigate symptoms by taking supplements, eating right, exercising and getting plenty of sleep. But there are some things I have no control over.
Sometimes, you have to sit back and give your body the time it needs to recover and rebuild. Trying to force a recovery on your timeline is futility…this I learned the hard way. Relinquishing control is one of the hardest things to do, but I finally started to heal once I stopped trying so hard.
I have read many articles about COVID long-haul patients and seen my own frustrations echoed over and over again. “When am I going to get better? When am I going to get my life back? Does anyone care how much this is affecting me and my family?” Fortunately for COVID long-haulers, there are so many people suffering that the medical community cannot ignore them. There is research being done and treatments being tested. And doctors are being forced to recognize that patients are whole people, not just a combination of parts. After my own experience, I immediately suspected mitochondrial fatigue and an overwrought immune system to be among the root causes of long-COVID. I am actually hopeful that the research being done will help lots of people who have been suffering indefinitely from “mystery” illnesses.
COVID has affected a lot of things, and most of us will not look back at 2020-2021 fondly. But let’s hope that these latest findings are only the beginning, and that traditional and functional medicine will meld together to give patients the best possible support and results in the future.
