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Jefferson Health

Home of Sidney Kimmel Medical College

It’s a Marathon, Not a Sprint:
My Battle with Long COVID

Alexandra Hackett has been battling long COVID for almost a year and half. Here, she shares an update on her journey to health, including frustrating setbacks and new holistic treatments with micronutrient infusions and acupuncture.

Before I contracted COVID-19 in March 2020, I would not have considered walking three miles to be a strenuous activity. Fast forward to July 2021, its reason to celebrate. As I am writing this, I just got home from the third, three-mile walk I have taken in a week. It is the most exercise I have attempted in a few months, but I have been hesitant to share this type of good news with anyone.

I have been battling long COVID for almost a year and a half. Mild to moderate COVID-19 lasts about two weeks for most people, but with long COVID, people experience lingering symptoms or a myriad of new symptoms for an extended period of time after initially contracting the virus. It is also referred to as post-COVID, post-acute COVID, and long-haul COVID. People with long COVID may refer to themselves as long haulers.  Early research points to as many as 10 percent to 30 percent of people who contract COVID-19 will go onto be COVID long haulers. That equates to millions of people.

One of the things I have learned about this illness – recovery is not linear. It may appear that your health is improving, then there’s another setback.

That’s what happened to me around the one-year mark from when I contracted the virus – long COVID brought on a bout of mononucleosis. However, I am embarking on a new treatment plan and that is giving me some hope.

How It All Started

I shared the first seven months of my journey with long COVID on The Health Nexus in November 2020. I had what’s considered a mild case of COVID-19. Flu-like symptoms lasted the entire week of my 43rd birthday. I started to feel better and resumed my working from home duties. Prior to my illness, I worked out five days a week, running, indoor cycling, and CrossFit classes. When I started back up with the running three weeks later I found I had no endurance.

More symptoms emerged over the months ahead, including heart palpitations, chest tightness, chest pain, breathlessness, anxiety, depression, memory loss and brain fog. The heart palpitations, chest tightness, and stabbing and burning sensations got so bad, a friend took me to the emergency department at Thomas Jefferson University Hospital in September. Subsequent visits with Jefferson cardiologist, Dr. Gregory Marhefka and pulmonologist, Dr. Saqib Baig, and numerous testing during the fall of 2020, showed my heart was healthy. There was evidence of minor lung damage, but Dr. Baig attributes the pain and discomfort in my chest to nerve damage. At times it was excruciating, but on most days it was tolerable. I was encouraged to exercise when I felt up to it. Dr. Baig said it was possible to regain much of my endurance but it would take a lot of work.

Cognitive deficits persisted as fall turned into winter, such as brain fog, memory loss and concentration issues. I had forgotten conversations with people. Thoughts constantly bounced around inside my head like a pinball machine. Sometimes it was difficult to process information.  I sought outpatient neuro rehab at Magee Rehabilitation – Jefferson Health. My treatment was approached as it would be with someone who was high-functioning with a minor concussion. A concussion affects a different part of the brain, but my symptoms are similar. I met with speech-language pathologist, Sarah Lantz, through December and January to develop strategies and tactics to help me sharpen my cognition and allow me to be more productive throughout the day. I found it to be very beneficial. After two months, though, I seemed to hit a plateau.

Major Setback

Twelve months after I contracted COVID-19, I was consistently working out three times a week, going to a class at an indoor spin studio, or a three-mile walk-run interval session.  I had been working up to this over a span of a few months. I had more energy. The breathlessness and chest tightness were improving. The nerve pain in my chest was lessening in intensity and frequency. It wasn’t anywhere close to the fitness level I had achieved prior to COVID, but I felt echoes of my old self coming back.

Then it all started slipping away. I was getting weaker with each passing week. The brain fog was getting worse. Jefferson neurologist, Dr. Kimberly Atkinson, ordered an MRI of my brain and numerous blood tests. Everything came back normal. I stopped exercising for a few weeks to give myself a break. At beginning of April, I took a few spin classes and I couldn’t make it through a session on the lowest resistance. One day I left class early and stopped at a CVS to pick up a few items, but when I was inside the store, I kept forgetting why I was there. I found myself walking around in circles and I started having a panic attack. It felt like the walls were closing in. I finally got what I needed, rushed to my car and cried.

My legs felt like tree trunks when I tried to jog.  One day I was so tired while out for a walk that I didn’t know if I could make it home. My body ached. My head felt heavy from the brain fog and at times it was difficult to process information. Then came the fevers. By the end of April, I was getting fevers daily, ranging from 99.5 to 101.1. None of this made any sense. Nothing with long COVID ever makes sense.

Desperate to Feel Better

I came down with mono several years ago. I remember reading somewhere that the Epstein Barr virus, which causes mono, lies dormant in your body after you recover. However, serious illness or stress can trigger the virus to reawaken. I messaged my primary care physician, Dr. Jessica Bricker, through the MyChart patient portal and asked if she would order a blood test to see if this was what was happening with me. In the meantime, I got an appointment with Jefferson rheumatology. I was scared. Many long haulers have shared in online support groups that the illness has caused autoimmune disorders such as postural orthostatic tachycardia syndrome (POTS) and lupus.

‘Is that what’s happening to me?’ I wondered.

Rheumatologists did an extensive evaluation and ordered numerous tests. While I was waiting for those to come back, I got the results of the test for the Epstein Barr virus reactivation. It was positive.

Fortunately, all of the tests for autoimmune disorders came back negative. That was a huge relief. Unfortunately, there’s not much you can do to recover from mono other than rest and nutrition. The exhaustion was relentless and I continued to get fevers every day for weeks. It made me feel imprisoned in my own home with no end in sight.

I was desperate to feel better. So I turned to the internet, one of the best weapons so far in my fight against long COVID.  By googling keywords I found published studies that showed intravenous vitamin C infusions had been successful in fighting the Epstein Barr virus. Then I discovered that these types of infusions were offered at Jefferson’s Marcus Institute of Integrative Health.

Holistic Health

To meet the growing demand for evidence-based, holistic care, physicians with the Marcus Institute of Integrative Health utilize traditional medicine, innovative technology, and proven complementary therapies to treat and prevent a range of chronic health issues. I met with Dr. Birgit Rakel virtually in the beginning of June. She asked me a lot of questions about my battle with long COVID, the reactivation of the Epstein Barr virus, and my overall medical history. She looked over the results of the many tests performed in the last year and notes from the other Jefferson physicians that had treated me.

Alexandra Hackett pictured alongside vitamin bottles with her hand extended, filled with her daily supplements

Alexandra with her daily dose of supplements.

From there she laid out a holistic treatment plan which includes:

  • Eliminating dairy from my diet
  • Eating organic foods, increasing consumption of fruits and vegetables, and limiting intake of sugary and processed food
  • A regiment of vitamins and supplements
    • L-lysine
    • Vitamin B-12
    • Vitamin C
    • Vitamin D
    • Multi-vitamin
    • CoQ10
    • Zinc
    • NAC
    • System Well
    • Rhodiola Rosea
    • Quercetin
    • Probiotic
  • Intravenous micronutrient infusions
  • Acupuncture
  • Mindfulness/meditation
  • Exercise/movement

Holistic medicine aims to improve health and wellness through the body, mind, and soul.  Studies have shown the body’s inflammatory response plays a crucial role in the clinical manifestations of COVID-19. In my case, the treatment plan for long COVID and mono targets several methods to reduce inflammation and boost my body’s natural defenses.

Improving gut health is an essential component to reducing inflammation. Sensitivities to foods such as dairy may increase inflammation in people. Processed sugars can also raise the risk of chronic inflammation, whereas other foods like fruits and vegetables can decrease it. Acupuncture has also been known to help calm inflammation associated with chronic symptoms from post-COVID syndrome.

@itsallnewstome2#PepsiApplePieChallenge #mylife #holistichealth #medicaltiktok #longcovid #longcovidawareness #longhauler #chronicillness #epsteinbarrvirus #healing♬ Drink – Clean – Lil Jon

Living With An Invisible Illness

So far I have had the first of four micronutrient infusions. At the Marcus Institute’s office in Center City a nurse hooked up an IV bag to my arm and I sat there for 15 minutes while the nutrients were absorbed into my body. I didn’t feel any different that day or the next, but having the ability to do a little exercise is a marked improvement over what I have been able to do in months. Acupuncture treatments begin in August.

Woman with mask on receiving an IV infusion

First IV micronutrient infusion on July 2, 2021 at Jefferson’s Marcus Institute of Integrative Health.

My experiences with long COVID have given me a new level of empathy and compassion for anyone living with a chronic illness. Whenever I am asked, “How are you doing?” it’s a tricky question to answer. People anticipate the standard reply, “I’m good. How are you?” The honest answer is that I have been struggling.

When people look at me they don’t see a sick person. You’d never know that my body is still fighting to recover from a virus that has long left my system.

As a member of Jefferson’s marketing and communications team, I have managed to continue working full-time from home. People get a brief peek of my life over zoom meetings, phone calls and emails, so they naturally assume I am doing well. They don’t know about the many days I’ve been sidelined by chest pain, fatigue, brain fog, and fevers.

Occasionally, the ongoing nature of the illness puts a strain on my emotional wellness. I miss the healthy and active person I was before COVID. I try not to dwell on the past. That’s not going to help me get better. I don’t focus too much on the future, because so much is still unknown about the condition.

The good days far outnumber the bad ones lately. Battling long COVID is a marathon, not a sprint. As a former marathon runner, I have relied on that mental endurance to make it this far and still have a ways to go. I remain committed to my treatment plan. I practice mindfulness and self-care. I am active when I am able, which sometimes looks like taking three walks a week. Every small victory is celebrated.

Editor’s Note: Tune into The Health Nexus podcast for a recent interview with Alexandra on her battle against long COVID:

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COVID-19, Patient Perspectives