Joey's breakthrough came around 2012 when after practicing extreme mold avoidance (getting new clothes, living out in desert) he found, to his shock and delight, he was able to hike and exercise vigorously again.
- Source of the Story:
- Internet story
- Resource Type:
- Patient Story
- Joey Tuan
- Chronic Fatigue Syndrome
- Other diagnoses:
- infectious mononucleosis
- Disease Course Over Time:
- Joey was working 60 hours a week when he became ill while doing a 17 mile Half Dome hike at Yosemite. He became bed-ridden and was diagnosed with infectious mononucleosis. He remained in very poor physical shape (unable to exercise, stand for short periods, read for long, etc.) for 6 years while spending over $200,000 on treatments.
His breakthrough came around 2012 when after practicing extreme mold avoidance (getting new clothes, living out in desert) he found he was able to hike and exercise vigorously again.
Some issues did remain but Joey's recovery was remarkable. It's not clear what his health is now.
- Mold Avoidance Approaches That Made A Difference:
- Camp for an extended period of time to decrease exposures to toxins.
- Use personal reactions to avoid locations, buildings or objects that trigger problematic responses.
- Use decontamination (such as showering and washing clothes) after exposure to problematic environments.
- Take care to stay out of moldy buildings.
- Do a “sabbatical” in a good environment to get unmasked and thus to become better able to identify environmental mold toxins.
- Put aside or discard some or all belongings exposed to a problematic environment.
- Take particular care to make sure living environment is free of problematic chemicals
- Move from a home with a mold/chemical issues to a different home.
- Move to a trailer/van/portable home
- Type of Onset:
- acute flu-like
- Approximate Date of Illness Began:
- Functionality at it's Worst:
- Mostly homebound
- Fever, extreme fatigue, post-exertional malaise, orthostatic intolerance, chemical sensitivities, extreme mold sensitivity, headaches, poor sleep, difficulty reading
- Treatments That Made A Big Difference:
- Extreme mold avoidance, camping outside in desert, creating mold-free environment in cargo trailer - http://paradigmchange.me/wp-content/uploads/2015/03/Toxin-Free-Home-for-7000.pdf
- Treatments That Helped:
- benzodiazepines for sleep
- Treatments That Had No Effect:
- Many, many treatments from prominent ME/CFS/FM doctors
- Present State of Health:
- Story taken from web - unable to tell
- Suggested Resources:
- Joey describes how he build his $7,000 mold-free "home" - http://paradigmchange.me/wp-content/uploads/2015/03/Toxin-Free-Home-for-7000.pdf
Eventually Joey built a mold-free home out of a cargo trailer.
Some issues did remain but Joey's recovery was remarkable. He began HealClick - a website which sought to help ME/CFS and other patients find helpful treatments.
It's not clear what his health is now.
- Additional Information: