Basic Stuff
- Name: Drew
- Country: United States
- State: California
- City: Los Angeles
- Gender: Male
- Age: 34
- Education: Four Year Degree
- Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
- Diagnosis:
- Chronic Fatigue Syndrome (ME/CFS)
- Postural Orthostatic Tachcycardia Syndrome (POTS)
- Irritable bowel syndrome
- Small intestinal bowel overgrowth
- Environmental Illness (EI)
- Long COVID
- small fiber neuropathy, CIDP (chronic inflammatory demyelinating polyneuropathy)
- Year Illness Began: 2018
Functioning Interrupted
Work Interrupted
- Former Occupation: team director at early stage tech startup
- Job Responsibilities at Former Occupation:
I was an early hire at a software company in NYC. I was responsible for the success and adoption of the software. I ran a team across multiple time zones, servicing 100+ clients.
- Years of Work Lost: 1
- Current Work Status: Not working now (not on disability)
Income Interrupted
- Yearly Income Before Becoming Ill:
$135,000
-
Minimum Current Annual Income Loss:
$161,180
- Total Projected Economic Losses For Years Not Worked:
$161,181
Other Interruptions
- My parents or other family members have provided financial support
- This illness has severely impacted my ability to financially prepare for retirement
- I left my job or retired early
- I had to move back into my parent’s house
- I decided not to have children (or have more children)
Most Impactful Loss
The ability to thrive in the way I wanted to in my 30's is my biggest lost. I had a life plan, filled with hobbies and ambitions and travels, that is now on hold, perhaps permanently.
My Story
I was working to get some diagnosed digestive issues under control (SIBO- symptoms were nausea, constant burping, fatigue, bloating, etc). Was taking some antibiotics and supplements to manage symptoms. In May of 2019, I went out into the ocean to surf (I still had energy and fitness) and after an hour or two, paddling back out I was suddenly winded and experienced an episode of extreme heart rate variability and tachyardia. My heart rate rose, I became short of breath and winded and suddenly my arms were exhausted. I never recovered from that day. I now see it as sudden onset ME/CFS, an autoimmune storm at took me out. I was sick as a child with EBV and had struggles throughout my adult life with gaining weight and a weakened immune system, a likely precursor.
COVID in March of 2020 left me with more persistent and permanent POTS symptoms.
To this day, whenever I try to exert energy, I become winded and quickly exhausted, with fatigue sometimes lasting days. I can’t walk for more than 15-20 minutes without needing to sit down (that's the POTS and Dysautonomia at play, I certainly can’t run, I can’t go to the gym or push myself in any way that increases my HR— even the slightest amount of exertion, like carrying groceries, moving things into the basement, washing my hair — leaving my arms feeling limp and useless (I know this now to be PEM). I’ll notice as soon as my heart rate goes up, I become winded, my chest gets tight and fatigue spreads through my body and I crash. I was once an active individual - regularly surfing, working out, spending time in the gym, traveling - but all are no longer feasible. I’ve lost around 25 lbs. The GI symptoms I have been able to improve with diet and supplementation, however I still experience flares, which will make the fatigue and PEM worse.
I have tested both positive and negative for Lyme. I have also done treatments for Lyme, but have not seen any improvement when doing so.
I have been diagnosed with POTS, SIBO, post Lyme, dysautonomia, hesitant ME/CFS, moderate / severe autonomic dysfunction.
I have seen many prominent doctors and specialists in the field. I believe that healing is possible and am actively seeking and researching. for the "Aha" moment, but every day is a struggle.
