An Update on my Long COVID Journey and what I'm Learning

As some of you know, I originally caught COVID-19 toward the end of October in 2020. Since then, I’ve experienced a variety of symptoms, including (but not limited to) severe muscle pain and stiffness, heart palpitations, chest tightness, tachycardia, extreme fatigue, brain fog, uncontrollable tremors, acute anxiety, shortness of breath, post-exertional malaise (PEM), difficulty sleeping, GI issues, and a complete loss of appetite. I think what may have triggered my experience of Long COVID is that I exercised too soon, when I thought I was getting better from the initial infection. In late February of 2021, I went to 3 hospitals. It wasn’t until visiting the 2nd hospital that my phosphorous levels were checked, and found to be dangerously low. I was given an infusion of phosphate until my phosphorous levels were normal, and was sent home the same day. The next day, I went to another hospital and learned that my phosphorous levels had again dropped to a very low level. After staying there for 5 days, I left with a prescription for phosphate tablets, and I continue to take 1-2 tablets a day. I believe that doing so has helped me get my appetite back, and has reduced the severity of a few symptoms. Although I continue to struggle with this condition, I haven’t had those terrifying tremors or heart palpitations in quite a while, my anxiety has lessened, I’m sleeping better, and my breathing has improved.

Recently, I learned that COVID-19 caused me to have a reactivation of EBV (Epstein-Barr Virus), which could explain some of my symptoms. EBV causes Mono, which I had as a teenager. I would not have known to test for this if it weren’t for other Long COVID patients sharing what they found. Based on my research, EBV may be a cause of CFS (Chronic Fatigue Syndrome), and considering that a lot of Long Haulers have PEM (a hallmark symptom of CFS), it seems that many of us now have CFS. EBV is also associated with other illnesses such as Celiac and Encephalitis — conditions that some Long COVID patients now have. I believe this may help explain why Long Haulers don’t always experience all of the same symptoms. EBV is among other Herpesviruses which have also been reactivated within many Long COVID patients, and for some, other types of dormant viruses such as Lyme have been reactivated. To learn more about this, I suggest reading an article titled “For These 17 COVID Long Haulers, Reactivated Viruses May Be to Blame”. Although I will likely be getting more tests done, a reactivation of Lyme (which I had years ago) has been ruled out, and my test for Celiac came back negative.

All that being said, it seems to me that having a better understanding of what dormant viruses COVID-19 is reactivating, as well as what other illnesses some of those viruses are leading to, is crucial for Long COVID patients to get the right tests and potential treatments.

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