In part 2 of my interview with mold warrior Erik Johnson, he tells about the lengths he’s had to go to get and keep himself healthy. Erik terms his approach ‘extreme mold avoidance’ - and that involves a modified and mold-free camper vehicle, and also mapping, and then avoiding, areas and buildings with high levels of toxic black mold Stachybotrys Chartarum.
Erik has been relentless in his efforts to bring awareness to the public, patients and researchers that toxic mold is an element of ‘chronic fatigue syndrome’.
Yet there is resistance by the Centre for Disease Control, by researchers, and by the medical profession, to consider or acknowledge how unseen toxic mold in our workplace, public and home environments may be making many people very sick.
As you will hear Erik explain, there has been incredible pressure to hide the impact of toxic mold on human health. Erik also shares how the derogatory label of ‘chronic fatigue syndrome’ re-classified an entire illness from an ‘infectious illness’ diagnosis, to the ‘all in your head’ insult.
Erik's Mold Map
The whole point of redefining CFS (chronic fatigue syndrome) was to put distance between CFS and the initial incident it was based on to keep it in maximum confusion - and loosened up on the psychiatric exclusion, whereas Holmes (definition) was clear that psychiatric must be excluded
When Erik saw strong connection between mold and CFS, he proposed to Dr Cheney that since he was focused on the viral factor, Erik would focus on the mold factor
The 1994 study by Chester Levine "Association of concurrence between sick building syndrome and CFS: Epidemic neurasthenia revisited" - was a study of clusters, including Truckee school - mentions other clusters including Elk Grove in California, where same exact malady emerged in teacher in a sick building
It took Erik several years to find out what specific mold was involved, but it was Stachybotrys Chartarum (SC), the dreaded black mold, same as the Lake Tahoe - Erik thought this should be included in the CFS criteria so that they become a putative mold reactivity patient
If CFS patients have mold reactivity, they can be instructed on how to avoid it and reduce symptoms - Erik tried to identify the worse place / buildings in Lake Tahoe and created a map to avoid them and started to recover
Erik thought he could maximize his recovery be spending more time in the nearby Nevada desert - he was eager to get back into aviation and hanging out a small airport - one day he sees a 'crazy man' out in the desert heat raking, by hand, a 700 foot landing strip
Nearby was a tractor with rake attached, set up to do the job - Erik asked him about it and got a strange look, as his mental wheels were turning - he said 'I've got this strange illness, I'm from Incline Village, Nevada, and doctors tell me I have CFS, and I come out to the desert because it is the only thing that helps' - he was coming to the desert for the exact same reason as Erik
They started telling other people - and taking them to the 'toxic' areas of town to see if they reacted and decide if they wanted to try to avoid mold - this is how the CFS Mold Tour began - he's taken many prominent people on this tour, author Julie Rehmeyer (Through the Shadow Lands) and she became a mold avoider
Jennifer Brea, director of documentary Unrest also got Mold Tour and realized she needed to avoid mold too - what is curious to Erik, is that no researcher enquired about why Jen was avoiding mold in her documentary
Erik has asked researchers at screenings of Unrest why they think Jen is doing that - but he has not been able to drum up any interested researchers - because SC is one of the most powerful neurotoxins known to man, it is essentially like nerve gas, so neuroinflammatory - repeated exposures cause neurological symptoms similar to nerve agents
The chronic inflammation puts stress on the nerves that the electrical impulses in the nerve become inhibited, and to compensate, the nerves thicken their myelin sheath to help nerve impulses and restore function
For a long time, researchers assumed these neurological symptoms were close to multiple sclerosis (MS) - so with intracranial hypertension, neurological information from toxic mold exposure, where the physical damage perpetuates symptoms, like in Chiari Malformation where the brain is literally pushing itself out of the skull, opening pressure on spinal taps, and spinal fluid leaks
Erik thinks breakdown of ligaments and collagen contribute to neck problems in some CFS patients and is due to downstream effects of chronic inflammation over years - Erik's health did pretty good for a few years
Erik would also check wind direction to avoid toxic areas, and being down wind of them, in town - if he couldn't avoid these areas, he would shower and change clothes as soon as possible
By reducing inflammatory response and cytokine cascade, he's been able to live like a normal person - Erik had to find a home free of mold - he also built a camper out of mold resistant materials to drive around that had a shower in it
This allows him to decontaminate quickly - but in 1994 he slowly started getting worse - turns out it was neighbouring houses, the sewer - Erik got sicker and sicker and went to Dr Peterson
But Dr Peterson was too busy with his viral interests - Erik got worse, almost bed ridden again - Erik was diagnosed, again, with CFS with reactivated HHV6 - Dr Peterson said Erik's only option was the drug Ampligen, an experimental medication that pushes the immune system into high gear
Some people have a spectacular response to Ampligen - but free Ampligen in the trial was only open to very sick / bed ridden patients - since Erik could still walk, he would only be eligible for the cost recovery program, but Ampligen cost about $60k / year and Erik could not afford that and his insurance company had canceled his insurance because he had CFS
Erik decided to try even harder to avoid mold, extreme avoidance and see if he could max out his health - Dr Peterson didn't think it would work, but since Erik couldn't afford Ampligen, what was there to lose - Erik bought a camper and drove it to the desert and spent as much time as possible in pristine environments and once again his health improved
Within 6 months of extreme mold avoidance, Erik was climbing Mt Whitney, the tallest mountain in connected USA, 13,500 feet high and a 25 mile hike - takes about 20 hours to climb
Erik thought that climbing Mt Whitney as a CFS patient avoiding mold would be impossible for researchers to ignore - but their reaction was 'how nice for you'
Erik says that mold is the common factor in all these clusters - but researchers don't want to investigate the mold aspect - he hopes one day we'll know why they are not interested
CFS emerges after a trigger, usually a viral infection - researchers focus on the trigger as if it was the sole cause
From the moment the CDC (Centre for Disease Control) announced they intended to collate the results, Erik began contacting CFS researchers and explaining he was the prototype patient for CFS, but he did not get one positive response
By the time the 1988 Holmes definition of CFS was published, Erik realized this was more than just a scientific endeavour, and more than documenting the toxic mold aspect, it was sociological research to see how researchers would handle a situation like this, and that's how Erik approached CFS research
Erik created a standard phrase to see how doctors and researchers responded: "I'm an Incline Village survivor and prototype patient for the 1988 Holmes criteria, would you like to hear about it?" - never, not once over 30 years has Erik had a positive interest response, it is mind boggling
When Osler's Web came out, Erik already realized he was getting 100% negative response from researchers and no interest in following up on the Lake Tahoe outbreak - but Erik couldn't believe that on page 25, the Truckee teacher cluster - Erik's teachers - is clearly described - when Erik makes his assertion that CFS was never investigated, it sounds unbelievable - but those teachers told Holmes there was something in that school room
In Osler's Web, it talks about the disdain Holmes had for these teachers - on page 49, a couple of patients ambush Dr Holmes and explained about that school room and the infrequently changed air filters in that room and asked him to examine the air filters in that room
Turns out the filters did have the toxic mold SC - the school realized they had toxic mold and hired remediators to clean it up and the incidence of illness decreased - the school and its teachers, remediators, towns people and local doctors know about this - but not CFS researchers
Erik went to CFS symposiums and said he could take them to the locations and introduce them to the remediators who cleaned up the mold - Erik ran into a problem: the school authorities did want people to know about it, the teachers are fearful of repercussions so keep quiet - and the remediators said they couldn't disclose because they had a confidentiality agreement with the schools
So the only person who has no vested interest and willing to describe it is Erik - the remediation of the mold was in the newspapers - so clearing up CFS is simply doing some epidemiology research
Erik climbs Mt Whitney every year to celebrate his recovery - he posts about it online and how has helped other people recover from CFS - author Julie Rehmeyer is the most high profile person he's helped - she wrote an article for the Washington Post: What is CFS and why is more not being done to study this disease?
In the 2015 article Julie describes how none of the other treatments her doctor had tried had much effect - Julie heard about the extreme mold avoiders and decided to come to Incline Village and Erik took her the sick buildings - after a short period of mold avoidance her post exertional malaise symptom had disappeared and she was climbing mountains
Media Interest, But No Researcher Interest
So we have a direct intervention for CFS and it deserves research - but still, no researchers have looked into mold in CFS
SC has been studied quite a bit, but only known in the mold community, not in the CFS community - the CDC puts pressure not to research mold - they don't want this very expensive problem to come to public light
Because a lot of schools and public buildings will be affected - the CDC did its own toxic mold investigation in 1984 and found exactly what they didn't want to find and they buried that research through paralysis by analysis - but stated that nothing conclusive was discovered and more research is needed, but they didn't do it
Erik has returned to flying, a very expensive hobby, and mold avoidance is a very expensive therapy and includes avoiding sick buildings and immediately decontaminating if he is exposed - so that curtailed how much flying he could do, so he turned to mountain climbing and hiking - Erik does a ton of advocacy work around mold, and that doesn't pay, he hasn't made a dime
Erik goes to the ME/CFS conferences and tells his story to researchers as they take an active disinterest - like Hillary Johnson said, the politics is so compelling it draws you back in, its unique, and the sheer unbelievable, bizarre aspect that keeps sucking Erik back in - he can't believe this happened and the medical and research communities behaved in this way
Erik believes to fix the problem, it needs to be brought to light - the medical profession needs to realize they've committed an epic failures in their entire history - perhaps the embarrassment will force them to reconsider how they do business
Erik doesn't think any one will believe or understand this complex convoluted history until a movie is made about it - Erik's basic premise is that a researcher would want evidence, and so Erik developed a test
Back in the 1800s when Ignaz Semmelweis, a Hungarian physician in Austria, discovered that hand washing killed germs - he noted that the 2 health clinics had different mortality rates - the midwife's clinic had a very good success rate, but the doctor's clinic had an unbelievably high mortality rate from childbed fever (puerperal sepsis)
Money Can't Buy A Ride Like This
A pathologist doing an autopsy on a childbed fever death, nicked himself and he then died of the same illness - this suggested something, 'cadavers particles', had been transferred to the doctor through the blood - Semmelweis implemented hand washing with lyme / bleach and instantly reduced the mortality rate at the doctor's clinic - there were no autopsy's at the midwife's clinic
Semmelweis didn't know it was germs, but he didn't need to - he only needed to note that there was difference between the buildings and start to investigate - the history of CFS is similar: sick buildings making people sick
But no current researchers are investigating - in effect, there are no more Semmelweis - Erik has used the internet to get this info out and spending a lot of time in social media groups building up a following to put pressure on researchers and all this will come to light
Why does Erik keep doing advocacy? Hillary Johnson described Dr Cheney when he was in the middle of his fight with the CDC as saying "Money can't buy a ride like this"
Connect with Erik Johnson:
Facebook: The Erik Johnson Effect
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Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
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