What is a cytokine storm?

You’ve probably seen the term “cytokine storm” in the news a lot recently. That’s because COVID19 is able to unleash a cytokine storm in the most sick cases.

As someone who has survived 5 deadly COVID19-like cytokine storms due to idiopathic multicentric Castleman disease and who studies cytokine storms in my lab, I thought I’d share a bit about what it feels like to experience a cytokine storm.

  • Terrifying. Your immune system become hyperactivated in an attempt to control the virus but begins causing collateral damage and spirals out of control.
  • Excruciatingly painful. The simultaneous failure of your liver and kidneys cause fluid to accumulate all over your body, including in and around vital organs. The stretching of the sacs surrounding your viral organs causes knife-like pain.
  • Exhausting. When you feel tired with the flu or a cold, it’s actually the cytokines your body produces to fight off the flu or cold that make you feel so tired and lousy. Now, imagine having 100-1000X as many cytokines?
  • Confusing. Toxins begin to accumulate in your blood due to the kidney failure and become quite confused.

I shared a video below about cytokine storms while I received my monthly infusion to prevent a Castleman disease cytokine storm.

David Fajgenbaum, MD, MBA, MSc, is a groundbreaking physician-scientist, disease hunter, speaker, and bestselling author of the acclaimed memoir, Chasing My Cure: A Doctor’s Race to Turn Hope Into Action. Best known as the ‘doctor who cured himself’ (Doctor Cure Thyself, NY Times), Fajgenbaum went from being a beast-like college Quarterback to receiving his last rites while in medical school and nearly dying four more times battling Castleman disease. To try to save his own life, he spearheaded an innovative approach to research and discovered a possible treatment that has put him into an extended remission. Now, he is spreading this approach to other diseases (His method could save millions, CNN) and sharing lessons he learned about living from nearly dying through Chasing My Cure, which has been translated into five languages and named one of the “Best Non-Fiction Books of 2019” by Next Big Ideas Club.

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