Meeting One of My Heroes: A Mold Tour with Erik Johnson

July 3, 2019

Lest my last post leave you feeling depressed, let me tell you about one bright spot we experienced in the middle of the chaos of losing our new house. We got to meet Erik Johnson! If you’re part of the ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and mold illness community, you probably don’t need me to tell you who he is.

But since a lot of my readers are not part of this community, I thought I would tell you a little bit about him. Erik Johnson was one of the victims of the 1984 mystery illness outbreak in Tahoe. This was the outbreak that got the CDC to come out to Tahoe and sparked the inception of the ME/CFS diagnosis. Erik was one of the first patients to be examined by Dr. Cheney and Dr. Peterson.

From early on, Erik noticed that clusters of the illness were occurring in sick buildings. The same virus swept through the entire town but those who never recovered where the ones who were living or working in certain buildings. They were left with chronic debilitating symptoms.

Being scientifically minded, Erik conducted his own experiments and discovered that specific molds, especially Stachybotrys Chartarum, were driving his illness. By spending time in pristine air and applying the biological warfare training he received in the army to his condition, he was able to achieve full remission. Not only that, he could climb mountains! Erik’s hope was always that his incredible recovery story would get ME/CFS researchers to sit up and pay attention to the mold factor. But alas, so far, researchers have had other ideas they’re more interested in pursuing.

Researchers may have ignored him but desperate patients were more than willing to listen. Erik pioneered the recovery strategy we call mold avoidance. In other words, Erik Johnson is the reason I’m alive today.

I trust you can see why I was so excited and nervous to meet him. It‘s like meeting a rockstar that saved your life! Except he’s intelligent enough to be a famous researcher!

When I heard Erik and his friends were hosting a mold education event, I knew I couldn’t pass up the opportunity.

The event was a camp-out that included Erik giving presentations on the history of ME/CFS, mold avoidance strategies and his theory on why the molds have gotten so much more toxic since the 1980s. The last day also included experimenting with sensing mold contamination on items and a trip into town.

We went to a building that was clear (no mold), a building that had some minor mold issues, and the Grant Sawyer Building, a building known to have a serious problem with Stachybotrys Chartarum. It was really impressive to see how Erik could pinpoint the exact source of the problem in different situations. He’s developed his skills so well that he can tell if a spot feels bad because of contaminated items in the building or mold in the wall. It was also affirming to see that all of the attendees felt the contamination on the same items and in the same spots.

Walking into the awful Grant Sawyer Building, was like walking into the twilight zone. I exclaimed, “This is how I felt all my life!” The dreamlike state. The fog. The feeling of being trapped inside a snow globe while everyone and everything passes you by. This is how I felt all my life.

We all felt the poison in one way or another. I got intense chest pain and an inexplicable need to cry. One girl went into a panic attack. Another woman’s hands began to tremor. Erik got his classic heart palpitations. The exposure almost leveled me but I bounced back quickly with a shower and a clean set of clothes. Within an hour, I was well enough to enjoy a meal at a restaurant with Erik and the others.

I can’t say the event altered my approach to mold avoidance. If anything, it confirmed that my coaches and mentors have been good students of Erik and that I am on the right path to healing. But spending time with Erik did give me new confidence that I can hone my avoidance skills even more. I can learn how to maintain my health in even trickier environments. Granted, I’m not at all interested in living in a sick building or a sick region. I will always prefer to spend time in pristine nature. Nevertheless, a more normal life feels attainable. I can feel myself getting closer to the finish line!

Learn more about Erik Johnson:

Back From the Edge: How One Man’s Discovery Brought Him From Desperately Sick with Chronic Fatigue Syndrome to the Top of Mt. Whitney in Six Months

The Locations Effect, Mold Avoidance, Curing Chronic Fatigue Syndrome and the Healing Power of Nature with Erik Johnson

Mold Avoidance Pioneer Erik Johnson Describes Toxic Issues During the 1980s Tahoe Cluster Outbreak of ME/CFS

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  • Ben

    Wow how awesome. He is a hero of mine to and so are you guys. Your blog has been such a resource as we have struggled through my wife’s attempt at recovery from CIRS. Sorry about the house. You are in our prayers.

    July 3, 2019 at 7:57 pm Reply
    • Ana Harris

      Thanks so much for this comment Ben and for your prayers! I pray for a full recovery for your wife. This is a hard road. I really recommend you listen to Erik’s interview (middle link) if you haven’t already.

      July 4, 2019 at 7:49 am Reply
  • Sandra Elam

    So glad to hear you got to meet Erik, Ana. That would be an inspiration to me, too. Praying for you to find another safe house.

    July 5, 2019 at 7:07 pm Reply
    • Ana Harris

      Thank you so much Sandra!

      July 6, 2019 at 12:09 pm Reply
  • Sandra Elam

    Ana, I wanted to add that I just listened to the Podcast with Erik that you linked to above and it was excellent.

    July 5, 2019 at 8:38 pm Reply
    • Ana Harris

      I’m so glad someone actually listened to it! It’s definitely worth the time. 🙂

      July 6, 2019 at 12:10 pm Reply
  • Donna Keller

    Great article. I’m trying to get to a tour but would have to fly there and not sure I can do that …May I ask who your coaches and mentors are? Or do you do mentoring? Looking for more guidance than FB posts provide. I’m Donna Jean in the groups if you don’t want to answer this here. I keep thinking there has to be a veteran person doing well that is mentoring for a living…

    July 11, 2019 at 3:09 pm Reply
    • Ana Harris

      Hi Donna,

      The only person who coached me formally was Sara Mattson and she was amazing. Unfortunately, she’s not offering coaching anymore. The other mentors have been friends we made on the mold groups. My best advice is for you pay attention to who is actually getting better. Listen to those people and tune out everyone else. I wish you the best! ❤️

      July 14, 2019 at 6:39 pm Reply
  • Katherine Morrison

    HI. Just saw a blog post on FB. Hoping to be well enough to get to Mt Charleston to learn more at the end of the month. Hoping to be able to start traveling to pristine areas too.

    July 14, 2019 at 2:01 pm Reply
    • Ana Harris

      That sounds like a great plan! I wish you the best on your journey! ❤️

      July 14, 2019 at 6:40 pm Reply
  • Katherine Morrison

    PS I have difficulty reading so I do not know how much of your blog I will be able to take in. I was able to watch the short video on laundry day. That helped.

    July 14, 2019 at 2:01 pm Reply
    • Ana Harris

      I’m so sorry Katherine. I’ve definitely been there. It should get better as you get clear. I’m glad the video helped. Maybe I should do more videos.

      July 14, 2019 at 6:42 pm Reply
  • Bella D.

    Wow, this is fascinating. I’d never heard of Erik Johnson until today, but my mom may have. I can see why you were so excited! Now I’m very interested in him.

    God bless you, Ana! I hope and pray for you to heal and grow stronger.

    July 22, 2019 at 12:47 pm Reply
    • Ana Harris

      Thank you for your prayers Bella!

      July 24, 2019 at 11:58 am Reply

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