Basic Stuff

• Name: Amy S.
• Country: United States
• State: New York
• City: Cortlandt Manor
• Gender: Female
• Age: 47
• Education: Masters Degree
• Primary Illness: Long COVID
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Postural Orthostatic Tachcycardia Syndrome (POTS)
  • Neurally mediated hypotension
  • Migraine
  • Mast Cell Activation Syndrome (MCAS)
  • Long COVID
  • small fiber neuropathy, gut dysbiosis
• Year Illness Began: 2020

Functioning Interrupted

Most Impactful Loss

My 25-year career in non-profit victim services was a huge source of pride and a big part of my identity. I went out on disability in May 2022 and was officially separated from my job at the end of 2022, and I am still questioning who I am without this part of my identity.

My Story

I became symptomatic with COVID-19 on March 25, 2020; it started with shortness of breath, and followed two weeks of intense, 14-hour days at work. On March 26, I received an email at work saying I had been exposed to someone who tested positive. On March 27th, I had a PCR test at a local hospital, which eventually came back negative. My PCP at the time told me to act like I had COVID and stay home and quarantine, and only go to the hospital if I could not catch my breath while sitting upright, since the ERs and hospital units were packed.

I was considered a 'mild' case - mostly SOB, fatigue, slight GI distress, lung burn. However, I remember one night during my acute illness where I was scared I might not wake up in the morning. I worked through the entire acute illness except for one day.

I was sick on and off until May, and by late May, I felt 100% recovered. I began doing medium-high intensity workouts again, including running and weight-lifting, and hiking. Then mid-June came, and even though I was feeling a bit fatigued, I celebrated my birthday with lots of different foods, sweets, and...alcohol. I had two big drinks with my birthday dinner. A few days later, I permanently crashed.

That is when I started my relentless medical journey to figure out what was happening. My longtime headache specialist ordered an MRI for me, which came back showing a white lesion in the corpus callosum that hadn't been on an MRI I had a year prior. She sent me to a specialist to rule out MS. After a spinal MRI, it was thankfully ruled out.

Around that time, I saw an infectious disease doctor and I told him I thought maybe I was having long-term effects of COVID. He ran a battery of tests for all kinds of other infectious disease markers, all of which came back negative. On the call where he shared these results, he said to me "I need you to consider the fact that this might not have been COVID," to which I responded, "I am. That's why I came to you, to see if it might have been something else. But I need you to consider the idea that you may have just seen your first long hauler." (Two months later, his nurse called me to find out the name of any long COVID specialists I may have found, because he had another patient with similar complaints).

Later that summer, I also saw a rheumatologist, who treated me kindly. She also ran a battery of rheumatological tests, which all came back negative. She is the first doctor who diagnosed me with ME/CFS, because she said I had prolonged fatigue and unrefreshing sleep and it had been 6 months since my acute illness. I quickly went home and began researching ME/CFS and scouring the internet for support and specialists. In late September, I began seeing Dr. Susan Levine, infectious disease specialist out of NYC who has specialized in treating and researching ME/CFS for decades. She ran a slew of tests that finally showed things: my EBV virus had been reactivated and I had T cell deficiency/exhaustion. She also tested me for MCAS, which I had. Finally, tests were starting to show what was going on inside my body. Simultaneously, I saw a pulmonologist and had a PFT, which showed that I now had asthma.

These things were all quite a shock, because prior to getting COVID, I was an avid exerciser and health nut, eating a vegetarian/pescatarian diet and working out 6-7 days a week, plus playing competitive volleyball, amateur tennis, and hiking regularly. I was 44 when I caught COVID and other than about 8 years of chronic, near daily migraines from ages 35-43, endometriosis, and Hashimoto's thyroiditis (which had been under control), I would have considered myself very healthy.

I took a leave of absence from work from August-December 2020, as the fatigue was severe. I attempted to apply for short term disability through my employer, but was denied initially and then upon appeal. I was forced to return to work in January 2021 because we needed my income. I worked p/t at home with accommodations, and for the next year and a half (Jan 2021-May 2022), I did a 'dance' of part-time and full-time as my symptoms waxed and waned. Ultimately, I believe I made my condition worse by continuing to work and as of late May 2022, I went out on leave again.

Also during that time, I continued to see doctors and get various tests. I started going to the local Post-COVID center; it was at a very large medical center in my area and I was one of their first patients. After a few months of acupuncture and failed physical therapy, I felt that the center was not helping me. They did not have any advanced or special understanding of long COVID. They simply hung out a shingle that they felt they could hang because they had many types of specialists affiliated with their larger medical center. But each of these specialists made me repeat my whole story and also disbelieved that I had had COVID. Some also didn't know that their own medical center had a Post-COVID treatment center. It was humiliating and a waste of time.

Other tests I received were an EMG and later a punch biopsy for small fiber neuropathy, the latter of which came back positive. Indeed one of my worst symptoms was burning and buzzing limbs and extremities. I experienced significant brain fog (cognitive issues, word retrieval issues, using wrong verb tenses or the wrong words for things, coordination problems, memory and concentration issues), especially in the first year. My fingernails have turned purple routinely every three months from June 2020 to the present. My functional medicine doctor more recently said he believes this may be a sign of microclotting common in long haulers.

I have had peeling hands, eczema, and bouts of significant hair loss. I have lost my voice a lot and have had GI issues (chronic constipation) for the entire COVID journey. I have had tinnitus, vertigo, and increased anxiety. I have POTS and neurally-mediated hypotension.

From April-October 2021, I participated in Bruce Patterson's IncellDx treatment program, which got me about 80% better, but four months in, I crashed and all my gains were lost. In April 2022, I began seeing a functional medicine doctor, whose testing revealed mitochondrial dysfunction, low butyrate, low metabolic and immune functioning, low cellular functioning, low testosterone, and adrenal fatigue. He has had me try a variety of supplements and medications, with little relief.

In July 2022, I went for the two-day CPET (cardiopulmonary exercise test) at Ithaca College. The test report showed 'moderate to severe' functional impairment, including low peak VO2, dysautonomia, hypocapnia, and abnormal energy production. My muscles and my brain do not get the oxygen needed to power me through an hour, let alone a full day. This test helped me obtain short term disability upon appeal, and then to receive long term disability. I am currently also applying for SSDI.

My EBV early antigen continues to be off the charts high, in spite of being on famvir and/or valtrex for years now. At 47, I am now on a statin for high cholesterol, metformin for pre-diabetes, and a beta blocker. I never imagined I would need such medications. My infectious disease doctor says that cholesterol and diabetes numbers are trending upward for long haulers as the years go by.

I am no longer employed as a non-profit executive, as the fatigue and other symptoms are too debilitating. I am focusing on recovery through acceptance, therapy, gentle yoga, and meditation.