Pilot
Disclaimer: I have never created a blog before nor had I even considered it before becoming ill. However, because so much of my time is now spent indoors, and having been inspired by reading others' experiences with ME/CFS, I have decided to electronically document my own journey. This pilot post is a summary of the onset of my illness to present day. I hope that if you are reading this and are scared and/or looking for answers, you are not alone.
...
I first became ill in December of 2016, with a terrible virus. I flew home for holiday break and felt odd the first night I arrived, but assumed it was from the cross country flight. When I awoke the next morning, I could barely get out of bed. I felt hungover, high, and like my body was someone else's. It was the worst illness I have ever had and I proceeded to spend the next 10 days on my mother's couch.
After barely moving for over a week, and at my mom's advice, I attempted to run my usual five-mile trail. I completed it, but was drained. After a brief New Years in Cabo I returned to San Francisco and proceeded to resume normal activities: high-stress job in Silicon Valley, crazy workouts, partying on the weekends. Something still wasn't right, so I went to see a primary care physician. All my blood tests came back normal, and my mono spot was negative. I was diagnosed with "post viral fatigue" and sent on my way. I would get better soon.
Throughout February and March I pushed myself through bouts of on and off exhaustion. I continued running five and six miles at a time, working nine hour days, and going out with friends. I had just started an Arabic class and was dating a guy I really liked. I visited a friend in LA, and spent a week in Austin a month later. After every exertion I continued to "crash." Finally, after one of my runs I knew I had to go back to the doctor. I was wiped out for a week from a short distance that should have been a piece of cake. After some preliminary online research, I proposed several tests to my PCP: Thyroid function, iron levels, Lyme disease, Epstein Barr Virus. Only the EBV came back positive, and because it was a virus, there was nothing he could do for me.
At this point, I had come across online forums of mono patients whose mono never went away. "Chronic mono," "chronic Epstein Barr," and "Chronic Fatigue Syndrome" became more or less synonymous. I was terrified after reading accounts of people who had been bedridden for 30+ years, lost their lives, friends, and families, lamenting via internet posts because no one else understood.
I began missing work and working from home for a weeks at a time. Not satisfied with my PCP's neutrality, I sought out an allergist/immunologist. "I've seen people with bad immune systems and you are not it... Let's do an EBV titer test to give you piece of mind... You're allergic to oak, which has been in season for the past five months in the Bay Area and could be a significant contributor... You're completely fine and should resume running again. And one more thing. Just don't get Chronic Fatigue Syndrome, but that's usually indicative of psychological problems."
I could barely move from my bed to the couch, but continued working 10 hour days, crying and exhausting myself in an endless cycle. Some days taking a shower would be the only activity I had energy for. After working from home for two months straight, I made a very tough decision to go on medical leave. I received 90 days of short term leave, which I am currently halfway through. I went back to NC at first and saw a wonderful holistic doctor. We ran myriad tests: methylation, cortisol, enzymes, sleep studies, etc. As it turned out, my sleep schedule was quite disrupted, my iodine levels (which aid thyroid function) were very low, and I am an "undermethylator." I have since begun a regimen of several supplements and vitamins to correct these issues and others.
In addition to the care of my holistic doctor, I was extremely lucky to schedule an appointment at the Stanford Chronic Fatigue Clinic. A typical amount of time before admission can average over a year, but thankfully when I called they had just hired a new doctor who still had a few openings. After a brief consultation, where I was (both to my relief and despair) diagnosed with myalgic encephalomyelitis/ chronic fatigue syndrome. I was prescribed the antiviral Famvir and Naltrexone to boost my Natural Killer cells. After 500mg of Famvir once/day for one week, I am now on 500mg twice/day and experiencing some worsening of symptoms. The labs that have come back indicate high EBV and CMV titers, and I am still waiting on my NK cell function results. I am also on CoQ10 and Curcumin (a more condensed Tumeric).
Besides being physically and financially draining, the past six months have also been the most emotionally difficult ones of my life. Like so many who experience the sudden onset of ME/CFS, I have spent hours on the internet, first trying to figure out what the f*** was going on with my body, and after accepting that had ME/CFS, learning just how little attention, funding, and research is given to this illness, despite over an underestimated 1 million sufferers in the US alone. There is an extreme hopelessness in receiving a diagnosis of an illness to which there is not only the absence of a cure, but also a widespread disregard for its validity and sufferers.
Over the course of this blog, I hope to document my reaction to both my antiviral and holistic treatments, examine the role of mindfulness, meditation and therapy, and to learn more about myself and others who are going through similar journeys. Xo
...
I first became ill in December of 2016, with a terrible virus. I flew home for holiday break and felt odd the first night I arrived, but assumed it was from the cross country flight. When I awoke the next morning, I could barely get out of bed. I felt hungover, high, and like my body was someone else's. It was the worst illness I have ever had and I proceeded to spend the next 10 days on my mother's couch.
After barely moving for over a week, and at my mom's advice, I attempted to run my usual five-mile trail. I completed it, but was drained. After a brief New Years in Cabo I returned to San Francisco and proceeded to resume normal activities: high-stress job in Silicon Valley, crazy workouts, partying on the weekends. Something still wasn't right, so I went to see a primary care physician. All my blood tests came back normal, and my mono spot was negative. I was diagnosed with "post viral fatigue" and sent on my way. I would get better soon.
Throughout February and March I pushed myself through bouts of on and off exhaustion. I continued running five and six miles at a time, working nine hour days, and going out with friends. I had just started an Arabic class and was dating a guy I really liked. I visited a friend in LA, and spent a week in Austin a month later. After every exertion I continued to "crash." Finally, after one of my runs I knew I had to go back to the doctor. I was wiped out for a week from a short distance that should have been a piece of cake. After some preliminary online research, I proposed several tests to my PCP: Thyroid function, iron levels, Lyme disease, Epstein Barr Virus. Only the EBV came back positive, and because it was a virus, there was nothing he could do for me.
At this point, I had come across online forums of mono patients whose mono never went away. "Chronic mono," "chronic Epstein Barr," and "Chronic Fatigue Syndrome" became more or less synonymous. I was terrified after reading accounts of people who had been bedridden for 30+ years, lost their lives, friends, and families, lamenting via internet posts because no one else understood.
I began missing work and working from home for a weeks at a time. Not satisfied with my PCP's neutrality, I sought out an allergist/immunologist. "I've seen people with bad immune systems and you are not it... Let's do an EBV titer test to give you piece of mind... You're allergic to oak, which has been in season for the past five months in the Bay Area and could be a significant contributor... You're completely fine and should resume running again. And one more thing. Just don't get Chronic Fatigue Syndrome, but that's usually indicative of psychological problems."
I could barely move from my bed to the couch, but continued working 10 hour days, crying and exhausting myself in an endless cycle. Some days taking a shower would be the only activity I had energy for. After working from home for two months straight, I made a very tough decision to go on medical leave. I received 90 days of short term leave, which I am currently halfway through. I went back to NC at first and saw a wonderful holistic doctor. We ran myriad tests: methylation, cortisol, enzymes, sleep studies, etc. As it turned out, my sleep schedule was quite disrupted, my iodine levels (which aid thyroid function) were very low, and I am an "undermethylator." I have since begun a regimen of several supplements and vitamins to correct these issues and others.
In addition to the care of my holistic doctor, I was extremely lucky to schedule an appointment at the Stanford Chronic Fatigue Clinic. A typical amount of time before admission can average over a year, but thankfully when I called they had just hired a new doctor who still had a few openings. After a brief consultation, where I was (both to my relief and despair) diagnosed with myalgic encephalomyelitis/ chronic fatigue syndrome. I was prescribed the antiviral Famvir and Naltrexone to boost my Natural Killer cells. After 500mg of Famvir once/day for one week, I am now on 500mg twice/day and experiencing some worsening of symptoms. The labs that have come back indicate high EBV and CMV titers, and I am still waiting on my NK cell function results. I am also on CoQ10 and Curcumin (a more condensed Tumeric).
Besides being physically and financially draining, the past six months have also been the most emotionally difficult ones of my life. Like so many who experience the sudden onset of ME/CFS, I have spent hours on the internet, first trying to figure out what the f*** was going on with my body, and after accepting that had ME/CFS, learning just how little attention, funding, and research is given to this illness, despite over an underestimated 1 million sufferers in the US alone. There is an extreme hopelessness in receiving a diagnosis of an illness to which there is not only the absence of a cure, but also a widespread disregard for its validity and sufferers.
Over the course of this blog, I hope to document my reaction to both my antiviral and holistic treatments, examine the role of mindfulness, meditation and therapy, and to learn more about myself and others who are going through similar journeys. Xo
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