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Erik Johnson: Mold Warrior Escaping Chronic Fatigue Syndrome

Erik was so sick his family had to carry him to the doctor. 


Now Erik hikes 170 miles and climbs mountains.


Erik Johnson Show Notes

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Autistic?

0:06:40

Erik grew up in the Sierra Nevada Mountains, about 100 miles south of Lake Tahoe on a stage coach road in an old hotel that was a historic monument, unfortunately Erik had a terrible experience with toxic mold that made Erik very sick and could not recover - pretty much everything he's done is to get better from this toxic mold

0:08:10

In 1964 his family took over management of the hotel and Erik started to get nose bleeds, fatigue, blinding headaches, rashes, neurological problems - often resembling autism - he was in and out of hospitals, saw many doctors and none could figure it out - but Erik knew by getting away from the hotel he would feel better - in the summer he'd live in the buggy barn so his room was available for guests, so every summer he was like a normal kid with lots of energy - when he moved back into the hotel in the fall, he'd get sick again

0:09:10

Erik's family and doctor attributed his symptoms to psychological problems, developmental problems, suspected autism - Erik has been on a quest to find out how many others have been affected - in 1964 he read some Mark Twain books (including Roughing It) in which he describes this illness as people from the East moving for the Western cure in California or Nevada from what was then called 'consumption' - referred to tuberculosis or any kind of wasting disease

0:10:40

Erik thinks many of the 'consumption' patients suffered from toxic mold - a Mark Twain character moved West to die, slept under the stars, started to feel better and climbed mountains - Twain quipped that 'he came West to die and made a poor job of it'

0:11:40

Erik realized when he was outside, his health improved so it was obvious to him that it was something in the hotel making him sick - when they expanded the hotel and cut through a wall that was insulated with newspapers that were covered in black mold - because the papers were so old, Erik tried to read them but completely collapsed

0:12:40

It was clear black mold was causing his symptoms - Erik was 8 years old when he figured it out - so he spent as much time outside the hotel as possible, but had to move back in for the winter months - it was devastating for him - his family moved to Lake Tahoe in the late 70s

0:13:40

But Erik experienced the same symptoms in his new school, especially the entrance - most people knew something was wrong, it was affecting a lot of teachers and students, and they learned to avoid the front entrance - Erik graduated and was still sick - turns out his school would be ground zero for the emergence of 'chronic fatigue syndrome' - a cluster of teachers with rooms near the entrance got a flu-like illness, but could not recover

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Toxic mold in the army

0:14:40

But the other teachers also got the flu, but they recovered - only teachers also exposed to black mold remained sick - it was Truckee School - subsequently a lot of work was done to clean up the school and it feels fine now to Erik

0:15:40

Erik realized he was being affected by a specific kind of mold no matter where he went - he thought joining the army would toughen him up by going through basic training with a physical life - he also wanted the adventure and hoped maybe the military would know how to deal with mold

0:16:40

Erik was overseas in a bunker built by Hitler - in 1976 the basement armory flooded and black mold grew on the cardboard and his entire unit got sick, including a couple of fatalities

0:17:40

The symptoms were the same Erik experienced in the old hotel - one guy who had hepatitis, it was reactivated and he died - several cases of cancer - they thought the staff sargeant had brain tumours and took him out on a stretcher and they never heard of him again

0:18:40

A swine flu hit his unit and made history because they were the first nuclear missile unit to be removed from active duty due to illness - it seemed obvious to Erik that the flu compounded with black mold exposure proved devastating

0:19:40

He would sneak out of the bunker at night to sleep outside - Erik got out of the army in 1978 because he couldn't face another situation where he had no control over escaping mold - he noticed a strange illness like his, move into the San Francisco Bay area

0:20:40

People would get the flu and not recover - Erik wanted to see if there was a connection to mold so he started going to their homes or workplace and indeed Erik would react to the mold - Erik had another black mold exposure and got very sick and couldn't function at work as a hang glider instructor

0:21:40

Erik was living in an RV and it got moldy - he was forced to move back in with his family in Lake Tahoe - his mother and brother physically carried him to a doctor's office, it turned out to be Dr Paul Cheney

0:22:40

Cheney took Erik's symptoms seriously but didn't have a clue to the cause - in 1984 Cheney suggested Erik go to a big clinic in Reno for testing - at the same time the worst flu they'd ever seen hit Lake Tahoe

0:23:40

The flu was so bad it got its own name, 'the Truckee crud' because it hit the town of Truckee before Lake Tahoe and Incline Village - when people didn't recover, Dr Cheney called the CDC (Centre for Disease Control) because a group of Truckee teachers all in the same room did not recover

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Sick buildings

0:24:40

Erik suggested to Dr Cheney to look into the mold - at same time another school and a casino had outbreaks, and the viral aspect was given more import and that's what Dr Cheney wanted to pursue

0:25:40

Erik went to the other locations and could feel the mold - Erik considers mold to be an important co-factor in maintaining illness - the CDC came but toxic mold had not been discovered on in the medical literature at that time - without an explanation for the sick buildings, the CDC created a new illness

0:26:40

Problem was the Tahoe flu was so severe and made so many sick as Hillary Johnson describes in her book, the local Chamber of Commerce was being whipped out, in ruins, people were so scared they refused to come to Lake Tahoe, a tourist town, dependent on the ski industry - that disappeared, 1 of 6 businesses went bankrupt

0:27:40

People cancelled reservations, and Lake Tahoe became known as ground zero for this mystery illness - the Visitor's Bureau pressured the CDC to trivialize the outbreak so the tourists would return - this is why they chose the trivializing name 'chronic fatigue syndrome' and did not include any of the immune abnormalities - the NIH (National Institutes of Health) and Dr Stephen Strauss were interested in the Lake Tahoe flu

0:28:40

NIH is National Institutes of Health and control funding for health research - when this strange illness was spreading through the US in the 80s, it reactivated Epstein Barr Virus (EBV), the 'kissing disease' - 96% of population has EBV - but testing was very crude in the 80s

0:29:40

Basically only showed if there was an elevation in EBV antibodies - Drs Peterson and Cheney used this crude test and everybody came up negative, so it looked like EBV was ruled out for the Tahoe flu - but a new test became available and Drs Peterson and Cheney re-tested and found the patients did have elevated EBV antibodies

0:30:40

They called the CDC and said we erred, the patients do have EBV - Dr Gary Holmes said if this is true, the outbreak would completely re-write the profile of EBV because its acting contagious with a short incubation period - if it has mutated, needs to be researched

0:31:40

So the CDC was investigating if there was a new form of EBV causing the outbreak - people are confused about that, thinking the CDC was called for the mystery illness, but the CDC mission was very narrow re EBV - that's why they only wanted to look at the serology reports, not examine patients

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Greatest medical error in their entire history

0:32:40

The results were confusing because some had elevated EBV but others did not - about 2/3 were a perfect fit for EBV, but 1/3 were not - Dr Holmes left and made an off-hand remark to a newspaper reporter that they were not seeing evidence of an epidemic

0:33:40

He was referring to an EBV epidemic, but the newspapers accused Drs Peterson and Cheney of creating hysteria - Dr Cheney told the newspapers the CDC was wrong and he's stand up in a court of law and prove it - an insult to Dr Holmes

0:34:40

So Cheney is fighting for his reputation, and Holmes feels insulted and refuses to return to Lake Tahoe - so 'chronic fatigue syndrome' grew out of a mistake, a misunderstanding of what Holmes of CDC was actually saying - Holmes acknowledged that people were actually sick - Erik said Holmes is one of the most maligned people

0:35:40

because the story got around that the CDC was trying to hide the illness - but that was not there goal at the time, that emerged later, but not due to Dr Holmes, he's actually a good guy 

0:36:40

About same time, Drs Peterson and Cheney sent blood to another lab and they found a new virus: HBLV - Human B-cell Lymphotropic Virus and renamed a few years later as HHV6-alpha, Human Herpes Virus 6 Alpha - an especially devastating neurotropic virus that was observed to wipe out B cells, the exact opposite of EBV

0:37:40

This explained why patients were negative on the crude test - this is described in Osler's Web, the cytopathic effect - the CDC was concerned the HHV6-alpha was causing the outbreaks - same time as emerging AIDS pandemic - 'syndrome' was a scary word, associated with AIDS - so 'chronic fatigue syndrome' didn't seem so pejorative at the time

0:38:40

'Syndrome' signified unknowns to be investigated - but it became pejorative when paired with 'chronic fatigue' - as confusion spread, the fear of a 'syndrome' dissipated - it took about 6 years

0:39:40

Then 'chronic fatigue syndrome' became identified as middle aged women who couldn't get their life together - the media is responsible for 2 things: misinterpreting Dr Holmes, and propagating a negative narrative of CFS - the Holmes definition of CFS specifically excludes psychiatric disease

0:40:40

But somehow the medical profession overlooked this - it is probably their greatest medical error in their entire history - has impacted millions of people globally

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Covering up an outbreak

0:44:40

In April 1986, Dr Cheney called Erik into his office and he was very excited with Erik's test results, saying it was incredible

0:45:40

Erik was now EBV negative - but Erik was disappointed because it was thought EBV was the driving force behind CFS, and could be treated with cyclovir - so that removed Erik's option for treatment

0:46:40

Dr Cheney explained that the CDC working hypothesis was that the illness is caused by EBV and it is being reactivated by lifestyle factors, alcoholism, smoking, drugs - a wealthy Chicago entrepreneur had a daughter who was sick with the illness and he was trying to stop the CDC from blaming EBV, and Dr Cheney was looking for proof that EBV was not a factor in the illness

0:47:40

Dr Cheney wanted Erik's blood, so Erik was the first prototype for the new syndrome by using Erik's blood to demonstrate EBV was not necessary, but HHV6 was, and it is a much more scary virus - so if the CDC really wanted to clarify, they would've named it HBLV (later called HHV6) disease

0:48:30

Initially Erik didn't want to be involved, due to time and responsibility, but Dr Cheney said he had to because Erik was the only patient from original outbreak that was EBV negative and had a duty to the patient community - Erik said he couldn't because he also had a mold problem but Dr Cheney said not worry about that now

0:49:30

Erik continued to be concerned that his mold problem would corrupt Cheney's data - it then occurred to Erik that if all these clusters occurred in moldy buildings, it means mold is a critical factor in the illness, not a confounder - Erik agreed to participate on that basis

0:50:40

Erik didn't realize that no researchers would ever come back to investigate the outbreak - and the CDC was not interested in the mold / sick building factor - the CDC used the confusion to bury the Lake Tahoe outbreak, and keep it buried

0:51:40

For about 4 years the CDC wasn't sure it would work because it would just take one epidemiological researcher to find the truth - by 1992 the CDC saw the trivialization had worked perfectly so started working on their Fukuda definition of CFS to replace the Holmes definition - but why bother? The description and criteria was very similar. What was the point? 

0:52:40

The point was that the Fukuda definition wasn't based on a scary outbreak that could be identified - the whole point of redefining CFS 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 was clear that psychiatric must be excluded


Part 2 of Erik's interview comi

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