In 2012 Simon was dating a lovely young woman who happened to have mono. She warned Simon against kissing her as she might be contagious, but he threw caution to the wind assuming catching mono would only be a temporary setback. Indeed he did get sick with mono, and was concerned that 6 months later he was still experiencing fatigue. The first doctor he visited diagnosed him with chronic fatigue syndrome (myalgic encephalomyelitis), a post viral illness for which there is no known cure. His condition continued to deteriorate, an experience Simon calls a “slow erosion of everything I considered myself to be.” He existed on his back in a dark room where even feeding himself became frighteningly difficult, occupying himself by researching his illness. He sought help from specialists all over the country who charged exorbitant amounts while providing no relief. Simon began to wrestle with his mortality as he withered over the course of 5 years, feeling like it was time to prepare to die.
In this episode of the Major Pain podcast, Simon describes his hellish journey through chronic fatigue syndrome and remarkable recovery. During his research he amassed a list of substances that might offer a road to improvement. He called these his ‘silver bullets,’ and started trialing them one at a time. One of these was low-dose naltrexone (LDN), an idea he found while scouring Reddit message boards. Naltrexone is traditionally used to help those recovering from drug and alcohol addiction, but Simon found accounts of individuals with chronic fatigue, fibromyalgia, Crohn’s disease and other immune disorders finding relief when micro-dosing this drug. Luckily his doctor agreed to prescribe LDN, and Simon began noticing positive effects right away. Very slowly he started crawling back to a functional life over the course of five years. Towards the end of that time he fell in love, got married and had a child, dreams he had thought impossible during the worst of his illness. Now fully recovered, Simon looks back on his 10 year journey with CFS/ME in awe that he not only made it through, but learned invaluable lessons that reshaped his outlook on life.
Although LDN proved Simon’s salvation from chronic fatigue syndrome, it is important to note that he has spoken with other CFS patient’s for whom it did not help. This podcast is intended to share his history and spark ideas for other chronic illness patients. It is not intended as medical advice or recommendations, as we are unqualified to do so.
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