Erik Johnson is a survivor of the 1985 Incline Village CFS epidemic, which led to the investigation
by Kaplan and Holmes that culminated in the coining of "Chronic Fatigue Syndrome".He was one
of the people Dr. Cheney and Dr. Peterson used to demonstrate that "Tahoe Mystery Illness" was
not chronic EBV.
I met Erik in 2007, when I posted “Maybe my house is killing me?” on a message board. He jumped
in and said, “Now you’re talking my language!”
Erik said, "An Induced reactivity to mold" was literally the first thing I said at the beginning of the
"CFS" epidemic after that "flu-like illness" whipped through town. Although when I asked Dr. Cheney
and Dr. Peterson if a virus could specifically create such a susceptibility, their answer was that to their knowledge, it would not!"
Eager to find some reason for the incredible specificity of his reaction to mold, Erik replied, "Then it must be a bacteria, because
whatever's got ahold of me seems to care a great deal about mold".
Erik lived across the street from Dr. Cheney’s office in the early ‘80s, and was a patient before Dr. Cheney became aware that there
were more people with the same strange illness-description. As a matter of fact, two months before Dr. Peterson saw the 1985
Strauss/Jones Annals paper that described the basic outline of his patient's symptoms, Dr. Cheney had told Erik that he should seek
help elsewhere, as he had no idea what was wrong or where to turn for answers.
In 1986, Dr. Cheney asked Erik to volunteer as a participant in the 1987 CDC Holmes CFS Definition Study Group to define the
disease that was termed: "CFS". Erik refused at first, because he had already told Dr. Cheney that he had already improved a great
deal by avoiding mold, and Erik didn’t want to interfere with the viral concept that Drs. Peterson and Cheney were formulating and
give the CDC another excuse to ignore the outbreak.
Dr. Cheney didn’t think Erik’s mold story mattered as far as his qualifications to participate in the group. He felt that Erik had the
immune parameters to act as a prototype for CFS. (As Erik said later, “My experience doesn't conflict with HHV6 concepts, but rather
adds to it since my "sudden onset" was identified by Dr Peterson as HHV6a.”)
As a matter of fact, Dr. Cheney insisted that Erik’s participation was vital, as the whole purpose was to provide evidence to the CDC
that “CEBV Syndrome” paradigm was inappropriate, since some patients were completely EBV negative. Erik was one of the 19 EBV
negative patients that Dr. Cheney identified from across the country. As a member of the "original Incline Village cohort" his
participation was crucial in Cheney’s eyes as a direct link which proved that EBV was not inherent or necessary in development of the
Lake Tahoe illness.
Stephen Straus and the CDC were caught entirely off guard by "The Tahoe Study". Straus reacted angrily and nearly had a nervous
breakdown.
In effect, CEBV Syndrome was forced to be renamed due to Dr Cheney's efforts of including Erik and the handful of other EBV
negative patients in the 1988 "Tahoe study". When Straus cursed “those Goddamned patients”, he was directly referring to this
group of non-EBV patients who could not be accounted for with his "EBV plus stress" concepts.
Erik had believed that as a prototype for the chronic fatigue syndrome, that doctors would want to analyze his mold reaction in detail,
as it would not be logical to leave relevant evidence without investigation. Erik's anticipated interest that researchers would have in
the conditions which existed in Incline Village at the time of these events did not materialize as expected. This aspect of the illness
remained virtually ignored until Dr Shoemaker instantly recognized the signs of biotoxin-mediated illness in Erik's story, and took it
upon himself to contact Erik to hear about these clues..
Despite some efforts at mold avoidance, Erik kept getting more and more reactive until he reached a point of hypersensitivity that
was so extreme that he could point to the offending substance on chairs, clothing, everywhere.
“Dr Peterson told me in 1997, "You are at a point where most people with CFS commit suicide, and only ampligen can help you", Erik
recalls.
Erik was placed in Dr. Peterson’s ampligen screening program. He remembers, “I was undergoing screening program in 1998 when I
was at my absolute lowest point when Dr Peterson said "Once again, just as during the outbreak, you are still EBV negative, and the
Perfect Case of CFS" and approved Erik for the ampligen drug trials.
“I couldn't afford it and didn't qualify for the Hemispherx funded trial. With nothing else left to try - I threw myself into devising a
strategy of extreme mold avoidance, based on my training in biological warfare in the Army.”
Within short order, Erik learned by using his perception, that the offending substance was Stachybotrys, a mold that produces
trichothecene toxins. He compared his reactivity to that of a person with an extreme peanut allergy. Even the slightest cross-
contaminations on his belongings would be enough to send him into an inflammatory response that wore him down.
So he decided to apply the biological warfare training that he received in the Army, and devised an "Extreme Avoidance" strategy
based on battlefield Nerve Agent protocols, in an attempt to find out how much relief might be accomplished by this method.
“It was amazing,” Erik said.. “This specific toxin had an effect that is all out of proportion to what everybody thinks. Although I had
become secondarily reactive to other chemicals, by avoiding this one specific "trigger", my condition improved beyond anything I
could have believed or dared even hope for.
“Within six months, I had gone from being devastated in Dr Petersons practice, and a candidate for ampligen, - to climbing Mt
Whitney, and went back to tell him about it. To my amazement, he wasn't interested.” Erik even brought pictures of himself climbing
Mt. Whitney, but to his amazement, this failed to inpire any interest in this clue to a possible contributing factor to CFS.
Erik has spent years since then controlling his symptoms through extreme mycotoxin avoidance. He has been living an active
lifestyle ever since.
Dr Ritchie Shoemaker tells the story of Erik's experience in his book "Mold Warriors" Chapter 23: "Mold at Ground Zero for CFS".
“Yes,” Erik says, “the "Yuppie Flu" came through and did what it did - but in unleashed an unbelievable response to specific
mycotoxins from mold. I'm not saying that mold is the cause. This is a complicated illness and this is just a piece of the puzzle - but
it's a Hell of a Clue! And it shouldn't have been overlooked the way it has.”
by Kaplan and Holmes that culminated in the coining of "Chronic Fatigue Syndrome".He was one
of the people Dr. Cheney and Dr. Peterson used to demonstrate that "Tahoe Mystery Illness" was
not chronic EBV.
I met Erik in 2007, when I posted “Maybe my house is killing me?” on a message board. He jumped
in and said, “Now you’re talking my language!”
Erik said, "An Induced reactivity to mold" was literally the first thing I said at the beginning of the
"CFS" epidemic after that "flu-like illness" whipped through town. Although when I asked Dr. Cheney
and Dr. Peterson if a virus could specifically create such a susceptibility, their answer was that to their knowledge, it would not!"
Eager to find some reason for the incredible specificity of his reaction to mold, Erik replied, "Then it must be a bacteria, because
whatever's got ahold of me seems to care a great deal about mold".
Erik lived across the street from Dr. Cheney’s office in the early ‘80s, and was a patient before Dr. Cheney became aware that there
were more people with the same strange illness-description. As a matter of fact, two months before Dr. Peterson saw the 1985
Strauss/Jones Annals paper that described the basic outline of his patient's symptoms, Dr. Cheney had told Erik that he should seek
help elsewhere, as he had no idea what was wrong or where to turn for answers.
In 1986, Dr. Cheney asked Erik to volunteer as a participant in the 1987 CDC Holmes CFS Definition Study Group to define the
disease that was termed: "CFS". Erik refused at first, because he had already told Dr. Cheney that he had already improved a great
deal by avoiding mold, and Erik didn’t want to interfere with the viral concept that Drs. Peterson and Cheney were formulating and
give the CDC another excuse to ignore the outbreak.
Dr. Cheney didn’t think Erik’s mold story mattered as far as his qualifications to participate in the group. He felt that Erik had the
immune parameters to act as a prototype for CFS. (As Erik said later, “My experience doesn't conflict with HHV6 concepts, but rather
adds to it since my "sudden onset" was identified by Dr Peterson as HHV6a.”)
As a matter of fact, Dr. Cheney insisted that Erik’s participation was vital, as the whole purpose was to provide evidence to the CDC
that “CEBV Syndrome” paradigm was inappropriate, since some patients were completely EBV negative. Erik was one of the 19 EBV
negative patients that Dr. Cheney identified from across the country. As a member of the "original Incline Village cohort" his
participation was crucial in Cheney’s eyes as a direct link which proved that EBV was not inherent or necessary in development of the
Lake Tahoe illness.
Stephen Straus and the CDC were caught entirely off guard by "The Tahoe Study". Straus reacted angrily and nearly had a nervous
breakdown.
In effect, CEBV Syndrome was forced to be renamed due to Dr Cheney's efforts of including Erik and the handful of other EBV
negative patients in the 1988 "Tahoe study". When Straus cursed “those Goddamned patients”, he was directly referring to this
group of non-EBV patients who could not be accounted for with his "EBV plus stress" concepts.
Erik had believed that as a prototype for the chronic fatigue syndrome, that doctors would want to analyze his mold reaction in detail,
as it would not be logical to leave relevant evidence without investigation. Erik's anticipated interest that researchers would have in
the conditions which existed in Incline Village at the time of these events did not materialize as expected. This aspect of the illness
remained virtually ignored until Dr Shoemaker instantly recognized the signs of biotoxin-mediated illness in Erik's story, and took it
upon himself to contact Erik to hear about these clues..
Despite some efforts at mold avoidance, Erik kept getting more and more reactive until he reached a point of hypersensitivity that
was so extreme that he could point to the offending substance on chairs, clothing, everywhere.
“Dr Peterson told me in 1997, "You are at a point where most people with CFS commit suicide, and only ampligen can help you", Erik
recalls.
Erik was placed in Dr. Peterson’s ampligen screening program. He remembers, “I was undergoing screening program in 1998 when I
was at my absolute lowest point when Dr Peterson said "Once again, just as during the outbreak, you are still EBV negative, and the
Perfect Case of CFS" and approved Erik for the ampligen drug trials.
“I couldn't afford it and didn't qualify for the Hemispherx funded trial. With nothing else left to try - I threw myself into devising a
strategy of extreme mold avoidance, based on my training in biological warfare in the Army.”
Within short order, Erik learned by using his perception, that the offending substance was Stachybotrys, a mold that produces
trichothecene toxins. He compared his reactivity to that of a person with an extreme peanut allergy. Even the slightest cross-
contaminations on his belongings would be enough to send him into an inflammatory response that wore him down.
So he decided to apply the biological warfare training that he received in the Army, and devised an "Extreme Avoidance" strategy
based on battlefield Nerve Agent protocols, in an attempt to find out how much relief might be accomplished by this method.
“It was amazing,” Erik said.. “This specific toxin had an effect that is all out of proportion to what everybody thinks. Although I had
become secondarily reactive to other chemicals, by avoiding this one specific "trigger", my condition improved beyond anything I
could have believed or dared even hope for.
“Within six months, I had gone from being devastated in Dr Petersons practice, and a candidate for ampligen, - to climbing Mt
Whitney, and went back to tell him about it. To my amazement, he wasn't interested.” Erik even brought pictures of himself climbing
Mt. Whitney, but to his amazement, this failed to inpire any interest in this clue to a possible contributing factor to CFS.
Erik has spent years since then controlling his symptoms through extreme mycotoxin avoidance. He has been living an active
lifestyle ever since.
Dr Ritchie Shoemaker tells the story of Erik's experience in his book "Mold Warriors" Chapter 23: "Mold at Ground Zero for CFS".
“Yes,” Erik says, “the "Yuppie Flu" came through and did what it did - but in unleashed an unbelievable response to specific
mycotoxins from mold. I'm not saying that mold is the cause. This is a complicated illness and this is just a piece of the puzzle - but
it's a Hell of a Clue! And it shouldn't have been overlooked the way it has.”
Erik's Story
email us at khaly@cfsuntied.com
TM