Contagious Viral Illness and Toxic Mold in the Lake Tahoe Epidemic

 

 

The quotes on this page are excerpted from Chapter 2 of the book The Role of Toxic Mold in Chronic Fatigue Syndrome by Erik Johnson.

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The 2019 photo above shows Erik in front of Truckee High School, which was a cluster location during the Lake Tahoe outbreak during the 1980’s of the illness that went on to be called ME/CFS. The issues with the building were described in a 1994 journal article written by Alexander Chester and Paul Levine, called “Concurrent Sick Building Syndrome and Chronic Fatigue Syndrome: Epidemic Neuromyasthenia Revisited.”

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The Mold Came First

Mycotoxin reactivity is a symptom of CFS, and in many cases it preceded the viral infection associated with “mono” or the viral encephalitis implicated in “clinical CFS.

I was a patient of Dr. Cheneyʼs in 1984, before the “Truckee Crud” went through. Dr. Peterson identified the “Truckee Crud” as HHV6a.

It was that viral illness that constituted my “sudden onset” of CFS.

The complaint that drove me to see Dr. Cheney before the CFS epidemic was a reaction to mold that nobody could understand, including him.

The illness that I had prior the HHV6a would have been called “chronic fatigue.” It took the viral infection to ramp up my illness to “CFS.”

The two are not even remotely comparable.

-Erik (2003)

*

I was a patient of Dr. Cheney’s before the “Yuppie Flu” went through and dropped a bunch of us in our tracks.

Guess what my complaint was?

“Chronic Fatigue.”

I told Dr. Cheney, “I have an inexorably increasing reactivity to mold that gets progressively worse no matter where I live or how well I take care of myself.”

This is what brought me to Dr. Cheney’s office in Carnelian Bay in early 1984.

So I was reactive to mold prior to CFS.

Afterwards my reactivity was absolutely life threatening.

Prior to the weird flu, my problems would have been adequately described as inexplicable fatigue, but after the “?” happened, the sensation turned into life-destroying godawful drop-dead neurological living death illness that was nothing like fatigue.

My susceptibility to mold was prior, not later as is automatically assumed, just as it was for the Truckee teachers and various other CFSers I have questioned about this phenomenon.

I thought that it was more than coincidental that this same mold that has such an effect on me showed up so often in clusters of CFS – especially the one that started it all, at my old high school, Truckee HS.

-Erik (2006)

*

Since the mold came first, it appeared to me that this type of exposure paved the way for creating extra severity when the HHV6a went through.

-Erik (2008)

*

>How sick were you before you started to feel the burn in your throat?

It was so vague prior to 1985 as to be almost imperceptible to me.

All that changed when the “Yuppie Flu” went through. After that, it was like inhaling hot coals and gargling with battery acid.

The Truckee teachers described it perfectly, but air quality professionals found nothing, so it was forgotten.

-Erik (2008)

*

What I told Dr. Cheney at the inception of CFS was that those of us who were already suffering these fatigue symptoms in the presence of mold seemed to have the absolute worst cases of the “Yuppie Flu.”

“Yuppie Flu,” “Tahoe Flu” “Mystery Illness” being the strange flu-like illness that went through Incline Village in 1985.

That flu-like illness is what was named “CFS.”

I told Dr. Cheney and Dr. Peterson that until they figured out what CFS is, I was going to continue to stay away from that mold.

-Erik (2010)

*

I was up checking out the construction on the WPI and found a spot plume in one of the buildings next door.

I asked a person working in the office nearest to the colony, “How do you feel around here?”

Naturally, she was surprised at the question, but replied, “The only time I ever feel less than bad is on a perfectly clear high pressure day.”

Yup. Seen that plenty of times. No biggie, tough people can handle it.

Then… one day, you get this funny little flu bug, and that’s all she wrote.

Gotcha!

-Erik (2010)

 

Deaths

“CFS doesn’t kill anyone.”

How often have you heard that?

Always said in the sort of tone that is meant to convince you that CFS is just a trivial illness.

But when the “mystery illness” went through town, a bunch of people died of heart failure, and whether they had that “weird flu thing” was completely ignored.

The only reason doctors say “no deaths” is because these instantly dead victims donʼt live long enough to become “chronic” and fit the criteria.

-Erik (2005)

*

When the “Yuppie Flu” hit Incline Village, I was working part time as a snow shoveler saving houses that were collapsing from heavy winter snows at Tahoe.

“Sierra cement,” we called it.

There was so much snow that in order to save houses, we were using double-handed crosscut saws with one handle removed to saw the snow into huge blocks that we rolled off the roofs.

People would come up to our teams with tears in their eyes, pleading with us to save their house next, saying that they could hear the roof beams cracking under the weight of the snow.

It was hard work and we did what we could, managing to keep a lot of houses from collapsing.

We were working 10-12 hours a day, and you couldn’t do this kind of work unless you were in reasonably good shape.

One of our team got the same damned weird flu that I did.

He just disappeared.

Somebody went to check on him and he was dead.

The official report was that he died of heart failure.

You’d think he would have died on the job if his heart was that weak.

But no, he died at home, coughing his lungs out.

I asked, “What about the weird flu – he had that too. Doesn’t that mean anything?”

I was told, “That flu doesn’t kill, so that is ruled out. It didn’t kill you, did it?”

Damn near!

And it was a bit of a shock when Dr. August Stemmer, the oral surgeon in the same building with Dr. Cheney and Dr. Peterson, suddenly dropped dead of heart failure while the epidemic was underway.

He was older, so this time it was blamed on his age.

All along, every time someone died who had the “flu-like illness,” the fact that they died was used as “evidence” because of the fixed notion that the illness creates “survivors.”

-Erik (2006)

 

All the Nuances

I don’t have any actual etiological disagreements with Dr. Cheney. I just feel there is an extra demonstrable factor was clearly present at Ground Zero for CFS which has been overwhelmingly overlooked.

I just happened to have stumbled over this clue and must have been too zonked to pick myself up and hurry away without noticing it.

-Erik (2006)

*

People generally leap to the conclusion that my assertions of mold are somehow in conflict with the CFS paradigm and that I am contradicting Dr. Cheney and Dr. Peterson.

But if you look over all my old statements, I say over and over that, “CFS happened exactly as described in Osler’s Web.”

There was just a little more to the story than was in the book, although the clues are there for those who know what to look for.

-Erik (2008)

*

My experience represents one portion of the CFS history that was never told for the simple reason that it appeared meaningless at the time.

Our expressions of an environmental component were so disbelieved that these clues were simply omitted or relegated to being nothing more than a result of the illness.

Events now indicate that these environmental factors were more relevant than they appeared.

-Erik (2009)

 

Mold and the Yuppie Flu

The Yuppie Flu was quite real and quite devastating. The only thing I was trying to add was that all the people who shared this mold reactivity were the very sickest CFSers.

I don’t know why it got so bad for a while. That’s the mystery. Something happened and doctors won’t help me figure out what.

-Erik (2007)

*

>What do you think caused the CFS epidemic in Incline Village?

How about an immune-disabling exposure to extremely potent protein synthesis inhibitors from trichothecene mycotoxins at the very same time that a rare virus was passing through Truckee High School?

-Erik (2008)

*

Since 1980, I had been going to doctors and complaining about intermittent fatigue.

I kept pointing at mold, but doctors all assured me this was impossible.

Because I had the growing awareness of “bad places,” I was amazed that when the “Truckee Crud” went through, it was people in these very environments who appeared to fare the worst with this flu-like illness.

I started asking the other members of the original CFS cohort about this connection, and it just kept cropping up again and again.

These people seemed to be just like me… especially susceptible to mold, perhaps even prior to the “Truckee Crud.”

One might vaguely remember the tennis pro from Osler’s Web. He had been in a helicopter crash and was pretty beat up, so he had a preexisting reason for falling apart.

It wasn’t until I checked out the apartment he was living in that I made the connection that he was another person who had been in the presence of mold.

Of course, I told all this to Dr. Peterson and Dr. Cheney, but they just kept saying that everyone was turning into a universal reactor, so mold was just another irritant.

My point was that no matter if it was cause or effect, if I could feel as good as I do by staying away from this specific substance, that it was well worth doing.

And that I wasn’t the only one who could benefit, if someone was willing to go extreme.

To the best of my knowledge, nobody else from the original cohort has done much more than to just try moving from a particularly bad place.

-Erik (2008)

*

The “Yuppie Flu” went through in 1985, just as described in Osler’s Web.

Whatever it was, it sure did something and left a lot of ruined lives in its aftermath.

This effect is so weird that I can spend year after year telling people, but most can’t quite bring themselves to believe it until they actually come out and do the mold tour.

-Erik (2008)

*

I only know what I saw:

That in certain specific biotoxin-laden Sick Building Syndrome environments, the “whatever” was capable of being very infectious by casual contact, with a savagely quick incubation period of 24-48 hours.

After that initial phase, the capacity for transmission seemed to just disappear.

I asked Dr. Cheney about this at the time. He confirmed that many viruses are no longer transmissible after the initial phase, but he dismissed the environmental component as probably being just a consequence of the flu-like illness.

-Erik (2009)

*

When the “Tahoe Mystery Illness” raged through Incline Village, I was astonished to see the amazingly strong correlation between these bad places and those who went on to become chronically ill.

-Erik (2010)

 

Incline Village Patients

I have interviewed many other Incline Village CFS survivors and accompanied them to mold zones, and the specificity of the response to mycotoxins is a common denominator.

-Erik (2005)

*

Whatever “went through” just slamdunked the hell out of people in a very strange and peculiar way.

It didn’t hit sick people in hospitals.

It didn’t strike the weak and unmotivated.

Nope. It really seemed to hit those of us who were getting our butts kicked by mycotoxins from mold in a very strange and noticeably specific way.

-Erik (2006)

*

From the very initiation of the CFS epidemic, this particular class of toxin just keeps popping up as the common denominator as a driving force in neurological CNS exacerbation of CFS symptoms.

Those of us in the Incline epidemic have different people testing positive for every damn weird thing in the book, and none of these have been the common denominator so far.

Some are Lyme, others Myco, most HHV6a, while CMV hits someone else.

But of all of the people I saw dropping like flies, there was one thing that truly kicked ass on everyone.

It was this darn “black mold.” And there were no exceptions.

-Erik (2006)

*

Remember the “Marathon Runner” that Dr. Peterson said “can’t walk to the corner anymore”?

When I walked in front of her house, there was a consistent mold plume that knocked me flat – bad enough that I had to avoid that area.

Remember the “Tennis Pro” mentioned in Osler’s Web?

I checked out his apartment at the racquet club. It was a grand slam.

Remember the “Champion Swimmer” who was in the Ampligen program?

After I educated Dr. Peterson about mold and he saw my recovery, he finally had her move out of her moldy house.

Remember the “Psychoneuroimmunology” experiment with Bill Collinge?

Another member of the original cohort who was there with me moved away and recovered somewhat – until he started working at a moldy casino and relapsed.

The “Crop Duster” pilot who blamed the OP pesticides he was spraying?

He fell apart whenever the wind blows from the moldy section of town and was calling the city council trying to find out what they know about this phenomenon.

This, of course, is in addition to the teachers and basketball team at Truckee who started the whole CFS deal.

I’m a graduate of Truckee HS and those were my teachers, and yes, that school was a slammer. Still is.

And then the small cluster at North Tahoe HS, which had a Stachy colony immediately adjacent to the teachers who became ill.

The size of the colony was about “the diameter of a baseball” and nobody believes them. They’ve been accused of living the life of luxury, taking advantage of the system by going on disability.

Remember Byron Hydeʼs findings that ME seems to have a particular affinity towards clusters in institutional buildings?

Remember Dr. Erich Ryll’s assertion that his “Infectious Venulitis” had the same “Sick Building” connection and that the phenomenon may be concurrent with SBS?

The connection of CFS to mycotoxins should be investigated.

-Erik (2006)

*

My extreme sensitivity to Stachybotrys allowed me to perceive it on the clothing of the CFS patients in Incline Village.

-Erik (2006)

*

All of us who survived the 1985 Incline Village CFS epidemic sure recognize the “20 vials of blood” scenario.

After I bailed out of Dr. Petersonʼs Ampligen program to pursue mycotoxin avoidance, I was sitting in Sierra Nevada Labs where he sends people for blood work ups (with those 20 vials) and getting mold slammed from their clothing as they walked by.

I started asking people who I perceived to be moldy if they were Dr. Peterson patients and I only got snookered once. Someone told me, “Not me, but my wife is.” He was just there to drop off the large bag of vials.

One guy came in carrying his teenage daughter, who couldn’t even stand up without help. As they walked by, I got the strongest hits of anyone so far. Their car was obviously contaminated since the girl started to recover somewhat as she sat in the waiting area. Yup – she was a CFSer!

After the 20 vials were filled and they were leaving, I stopped them outside in the parking lot and said, “I know this sounds crazy, but I have become hypersensitive to a specific mold which I can feel very strongly from your clothing. Will you allow me to do a test?” They agreed, looking amused and bewildered at my weirdness.

So I walked around them at a distance until I got downwind of them and felt slammed.

Then I walked right in between them and got major slammed, and said, “Okay, that’s good enough.”

So I wrote down the name “Stachybotrys” and my phone number on a scrap of paper and handed it to them.

I said, “Please just do a computer search and compare your symptoms and tell me what you think. Avoidance of this particular mold has made the difference between lying helpless in bed and climbing mountains for me, and I can definitely feel it on your clothes.”

I got no call, but my karma is good – I gave it a shot.

-Erik (2006)

*

My complaint from the first day of the CFS epidemic was that I have “an inexorably increasing reactivity to mold that grows progressively worse no matter where I live or how well I take care of myself.”

This was the anomaly that doctors always considered to be the total consequence of the “Yuppie Flu” no matter how many times I explained that this preceded the infection that went through Incline Village.

Many people caught that strange flu-like illness at the same time, but not all went on to become chronically ill or eventually be called CFS cases.

I proposed that if not all people succumbed to perpetual illness, one might consider that a more primary cause of CFS might be whatever difference existed between those who recovered and those who did not.

A reactivity in the presence of specific mycotoxins was the commonality that I saw in the Truckee teacher cluster, the girlsʼ basketball team, and the teachers at North Tahoe High school – as well as many of the other original CFS cohort survivors who all manifested reactions when we encountered mold plumes.

Mycotoxin susceptibility appeared to be the common denominator.

The other members of the “Tahoe Mystery Illness” that I accompanied into mold zones appeared to be similarly affected.

As the “Yuppie Flu” epidemic progressed, I had the opportunity to accompany many of the other original CFS cohort members into moldy buildings and they all shared that same abnormal mold response, although they always blamed it on something else.

-Erik (2007)

*

Some days, I would drive down to the Carson City Stolport, a primitive airport, not knowing if I was going to feel well enough to fly when I got there.

But I knew from years of experience that when I got out to the desert I was much improved, and I would wait for this to happen. Sometimes it took a couple of hours.

One day in 1989, I saw a friend from Incline Village out raking the rocks off the strip and throwing up a cloud of dust with his efforts.

There is a tractor to do this yet he was doing it by hand. This didn’t make sense to me, so I walked out to talk to him.

He seemed a little pensive and then he started to explain to me, “The doctors think I have Chronic Fatigue Syndrome.”

Huh? Most of the people I know with CFS are fighting to be able to stand up, so how could this kind of activity be possible?

I almost started to say that he couldn’t possibly have CFS if he was out here doing what he was doing, but then I thought, “Wait…I’m out here, doing what I’m doing… because there is something good about being out here in the desert that allows me to do what I’m doing.”

And then he said the words which laid the whole thing bare. “I only feel good when I’m out here, so that’s why I’m out here doing this.”

Well, what do you know? Another one who is just like me.

-Erik (2008)

*

This was the interesting thing I saw in Incline Village.

The people who were the absolute worst were those who were living under conditions of
high mold exposure.

-Erik (2010)

 

Mercy Hospital

In 1975, the first reported epidemic of what later was called CFS occurred.

It involved health care workers at the Mercy San Juan Hospital in Carmichael, California. Most of those cases are still being treated by Dr. Erich Ryll of Sacramento, California.

I spoke with Dr. Ryll and he described symptoms to me that were perfectly consistent with mycotoxin reactivity, aka Sick Building Syndrome.

Funny thing about those moldy old hospitals!

-Erik (2005)

 

CFS Patients

As my reactivity grew less, my sensitivity or ability to perceive grew more intense. And when I went to CFS groups to tell my story, I could feel “mold hits” consistently on almost everyoneʼs clothing.

They were virtually all complaining of the clues that led me to my conclusions, yet they would consistently discard my story and reject my proposal.

I even led people in and out of mold exposures and they would fall apart.

I would ask them, “What do you think that was?”

They would either say, “It’s just me” or “Just a reaction to chemicals,” even though the places I would take them had visible mold and little potential for containing chemicals.

Some even said, “You almost had me convinced because I could feel it for myself, but then I went to my doctor and he told me that this is impossible.”

-Erik (2005)

*

It was wild talking to the Reno CFS support group at St. Mary’s seven years ago and having them all deny that mold was a problem….

Even though they complained of exactly the same clues that led me to extreme avoidance and were reeking of so much mold that I had to step out of the room to get a breath of air.

-Erik (2005)

*

I’m still looking to find a CFSer who isnʼt being affected by these toxins.

But because of the strange way in which the effect presents, very few people consciously implicate mold or do much in the way of proactively staying out of range.

I can take CFSers to various mold sources that were the very site of famous CFS clusters and people have a response consistent with the immune paralysis that appears to be of enough importance to make these sites stand out.

No matter whether this is the cause or result of the illness, these exposures are so devastating that proximity for a CFSer seems to be consistently deadly.

A bit of concerted effort at detecting and decontaminating from these toxic exposures appears to have benefits directly commensurate with the degree of avoidance.

If you’re dealing with an illness of neurological deficit, doesn’t it seem reasonable that addressing problems arising from a ubiquitous environmental neurotoxin might be of some slight benefit?

At the very least, the presence of toxigenic molds in association with CFS onsets is deserving of serious research.

-Erik (2006)

*

I figured out what that “location badness” was, mostly because I tripped over it when there was nothing else around. No chemicals or anything, just mold.

Being a prototype for CFS, I thought that people might want to hear about this little oddity, especially since I recovered so much that I was out climbing mountains instead of lying in bed thinking about shooting myself.

I’m not saying that mold is the cause, just that this seems to be one hell of a clue, since so many seem to be affected even though they can’t quite make the connection as to where this horrible feeling seems to come from.

Mostly, by trying to tough it out, they stay in a situation where being tough doesn’t much compensate for having your blood flow shut off.

So far, all the CFSers I know haven’t done very well when they get around this type of mold, and when they complain that storms knock them out, I figure they are probably just like me.

Once they go with me to a mold zone and feel it for themselves, that pretty much narrows it down to a near certainty.

-Erik (2006)

*

What I noticed at the beginning of the CFS epidemic was that sufferers were being dropped in their tracks by these types of mold exposures.

These exposures were occurring at a level so far below the ability of researchers to measure that they were going undetected and unappreciated.

Only a hypersensitive person who was aware that it was mold could detect these “bad zones.”

-Erik (2007)

*

I sat outside that Hemispherx Ampligen infusion room, shaking with tremors from the mold hits I was getting from people’s clothing.

The Ampligen did help some people.

But I would ask these people drenched with mold about the vague clues of strangely getting better or worse at certain times and places.

I found that some were even so fortunate to have gotten clear momentarily and were wondering what had created this incredible good effect and how it might be possible to exploit it.

People just get sicker but I cannot tell them why – because until they are willing to try and get clear with full knowledge of what the goal is, they cannot believe that such an effect might really exist.

I think it is simply that, “The Eyes Cannot See What The Mind Cannot Conceive” and they just plain never heard of this before.

-Erik (2008)

*

I would venture that a study attempting to correlate CFS and moldy homes will produce results that would convince you that mold is merely a chance contributor.

If CFS and moldy homes had a strong correlation, people would have moved, noticed the difference, and the concept of moving as a therapy would probably be well known by now.

My words to Dr. Cheney at the beginning of the Incline epidemic were this: “I have an inexorably increasing reactivity to mold that grows progressively worse no matter where I live or how well I try to take care of myself.”

I had moved many times, and there was just enough of a difference to let me know that that moving had a very slight effect.

But since that was the only effect that seemed to make any difference, I proposed to doctors that we attempt to find out exactly what it was and to try to extract the greatest possible benefit from this one seemingly slight trigger.

The type of avoidance I’m talking about is based on my military training in biowarfare protocols, as if I were passing through areas contaminated with nerve agent.

This has to be done on a moment to moment basis.

It is not something that most people would willingly undertake, but as I proposed to doctors, the very fact that someone who did give this a try got such good results is one hell of a clue.

-Erik (2008)

*

I couldn’t sit on the wooden bench outside Dr. Petersonʼs office. The chairs at Labquest, same thing.

So I would venture the concept that any doctorʼs office that attracts CFS or mold patients has the potential to be contaminated beyond the tolerance level of a severe reactor.

-Erik (2009)

 

Mold In Lake Tahoe

No, I don’t believe that mold took over Incline Village.

I just want to find out what role the predisposing condition of mycotoxin susceptibility plays in this illness.

As far as I know, I was never exposed to more mold than anybody else and yet for some reason I have become unable to tolerate it.

-Erik (2003)

*

I didn’t live in a tent while I was doing this mold avoidance craziness. I was right across
the street from Dr. Petersonʼs office.

It was just that I learned not to sleep in a moldy area and would decontaminate after exposures while traipsing around Incline Village.

There’s a really ripping plume right down at the bottom of Village Blvd. that would knock me flat if I didn’t decontaminate after passing through.

-Erik (2005)

*

Remember the “marathon runner” mentioned during the Incline Village CFS epidemic?

I lived three houses up from her.

The killer spore plume is right down at the bottom of that very street, at the corner of Village and Lakeshore.

-Erik (2005)

*

Dr. Peterson often described a marathon runner who can hardly walk after the illness.

That marathon runner lived four houses down the street from me. When I attempted to walk in that direction, after I had improved to the point in which I could walk, I would crash afterward. But if I walked the other direction, up toward the top of Incline, not only did I fail to crash, I gradually improved ever so slowly.

That marathon runner moved away from Incline and is said to have dramatically improved. This is seen as just a coincidence and a fluke, yet it was entirely consistent with the benefit that I gained by avoiding certain areas.

This was an effect that has made all the difference for me between a life of perpetual pain and having adventures that would never have been possible otherwise.

-Erik (2006)

*

The mold was in various places, especially the sewer drains running down Village Boulevard in Incline Village.

-Erik (2007)

*

There is a wooden bench just outside Dr. Petersonʼs office in the main hallway of the Washoe County courthouse building. It is where Peterson patients sometime sit.

It was so definite, just one small hit, but it was there in the middle of that bench.

-Erik (2008)

*

The mold is mostly inside buildings, but does also occur outside in various places.

-Erik (2008)

*

When the badness moved into Incline Village, half a blockʼs distance and a strategy of decontamination is what made the difference for me.

-Erik (2009)

*

While I was growing up at Tahoe, a weird “effect” moved into town.

But I can’t tell anyone about it. Telling has almost never worked.

Not because I can’t say the words, which are clear and straight to the point.

It’s because peopleʼs minds refuse to believe my words, until I take them around Incline Village and show them where the effect is.

-Erik (2010)

*

I’ve heard from many people who say that their illness can be traced back to a vacation to Lake Tahoe.

Yes, there is something environmental happening here.

There were these zones that did something by just momentarily passing through that would leave one wiped out and in distress for hours or days afterward.

I learned the hard way to stay the hell out of them.

This effect was so powerful that although the point sources of these zones were fairly localized and I could stay out of them, the cross contamination was so broad that the only way I could get clear enough to recover was by getting out to the woods or desert.

So that is what I did.

This strategy literally took me from being barely able to stand to climbing mountains.

-Erik (2010)

*

>There is something else in Texas, worse than the regular badness. It blows up from the south and coats everything in a new level of toxicity. It puts an extra layer of toxicity on top of the mold toxins that are already there.

>Some of us started comparing notes and watching the weather. Whatever “it” is blows right on up into Oklahoma and Kansas when the winds are right. It also creeps into eastern parts of New Mexico, Colorado, and much of Louisiana.

This is what moved into the very heart of Incline Village back in 1984.

That’s when the shit hit the fan.

Yes, there was a virus or something.

But there also was this.

And though we have some substantiating evidence that we can point to, this phenomenon has barely begun to get any attention. So, the anecdotal evidence has far outstripped the official sources of information.

-Erik (2010)

 

Truckee and Tahoe High Schools

The mold in Truckee High School also made me sick when I was a student there.

I was just back there a week ago to check it again and the place is still a slammer. I felt mold hits immediately.

One of my old teachers who was part of that cluster told me, “I could have killed the guy who put the sheet metal cover over the ventilation system. We could hardly breathe in there. It made our eyes burn.”

A “baseball-sized colony” of Stachybotrys was also found immediately adjacent to a small teacher illness cluster at North Tahoe High school.

Of course, their fellow teachers accuse them of faking illness and malingering, just as with the Truckee teachers.

-Erik (2005)

*

I had been a student at Truckee, and the place had knocked me flat.

I knew from going to that school over and over that when it was stormy, it was godawful mold spore hell.

Approaching storms unleash vast spore clouds from these mold colonies and can increase the spore count from near zilch to a few gadzillion – in minutes.

-Erik (2006)

*

I have to literally drag someone in and out of mold exposures, time after time, before it starts to sink in just how desperately this stuff must be avoided.

Truckee H.S., where CFS began, is still one of those places. You can go there and watch your veins go wild.

It doesn’t feel like all that much. Certainly a strong-willed person could tough it out.

No, this response doesn’t care.

If you’re a Moldie, it will eat you alive, piece by piece, bit by bit, until you’re nothing but a groveling pathetic miserable lump of flesh.

-Erik (2006)

*

> How did they determine the size of the colony at Tahoe H.S.?

Visually, but they were only looking at one problematic satellite colony.

Finding one doesn’t mean they’ve found them all, nor have they accounted for other sources of exposur

-Erik (2006)

*

I sure wish I could take you to Truckee and North Tahoe High School.

Nobody who dropped there believes it is mold which is having this effect. It all seems impossible, improbable and contrary to science and common sense.

Even the Truckee teacher cluster disputes my craziness.

The teachers at NT are a bit more focused on this, because their illness corresponded to the exposure and leak in such a specific spot. But even they are baffled by the size of the colony immediately adjacent to their stations: “About the size of a baseball.”

I never made any claims that mold could accomplish such a thing all by itself, only that when these people are re-exposed to unbelievably slight exposures to this same toxin, in the same place where they got sick – they drop in their tracks.

Just like me.

-Erik (2006)

*

The tenth teacher from Truckee High School was growing so ill in that teachersʼ lounge that he took his lunch out to Donner Lake and sat there in his truck.

He connected his progressive illness to that lounge and got out.

He was the one who recovered.

That was a clue that made me consider that mold was the mediating factor in whatever illness it was that passed through: the difference between those who got better and those who did not.

Those other nine who stayed under the influence of Stachybotrys in Truckee High School got worse.

It was only this one teacher who recognized that the burning eyes, coughing, inability to breathe, rashes, fatigue, headaches, and all the other crap that was happening in that mold-ridden teacherʼs lounge was having a deleterious effect on him.

And he bailed out.

He escaped CFS while those of us who stayed in moldy places while the “Yuppie Flu” was going through town did not.

-Erik (2006)

*

>What happened to the other half of the girlsʼ basketball team?

As far as I know, nothing happened to the rest of the team.

Just as nothing happened to the other nurse trainees, doctors and patients at Royal Free.

-Erik (2006, CFSExp)

*

Truckee High School is not as bad as it was since they got rid of the moldy carpet which made the place such a slammer, but it’s still pretty bad.

You know that “air hunger” people keep talking about? That’s part of the mold tour.

When I dashed into Truckee to take pictures, I looked in the infamous teachersʼ lounge and saw a student struggling for breath.

If you understand what these toxins do and then combine that with a jaunt through the teachersʼ lounge, you can feel it all start to make sense.

-Erik (2006)

*

Of the dozen or so teachers who regularly gathered in the makeshift faculty lounge at Truckee High, 11 developed symptoms of CFS.

No toxic chemicals were ever detected in the ventilation system or water pipes or anywhere else.

And they utterly failed to find anything beyond what might be considered “acceptable” amounts of mold.

When the same thing happened at North Tahoe High School some years later, there was still no satisfactory explanation. And then again at Elk Grove, still a mystery.

In fact, I’ve been watching the fail repeatedly for over two decades – and when they do, the incident is dismissed as some kind of fluke, and the survivors are dismissed and forgotten, although they remain ill.

Yet it keeps on happening, again and again.

People should be much more concerned than they are. You won’t find a single survivor who ever dreamed that such a thing could happen to them.

-Erik (2008)

*

Truckee High School was never the worst building on the planet. Far from it.

But there was something about putting “The Yuppie Flu” and whatever is in buildings like that together that equaled more than the sum of its parts.

I’ve had CFSers go to Truckee High School, and they can feel that something is wrong.

Testing at the various CFS cluster buildings failed to find anything, so medical doctors ignored the fact that CFS patients continued to complain that they could still feel strange burning sensations and nausea in these locations despite the assertions of air quality experts that these areas had been pronounced safe.

Notice that I don’t get much into toxin specifics, or really insist upon much of anything other than “the effect is there.”

And ever since the beginning of the CFS epidemic, researchers have used their own evidence of being unable to identify it as a reason to treat this effect as if it wasn’t there.

This has made me extremely distrustful of testing, because all testing has done is prove that they don’t know how to test for it…. whatever “it” is.

-Erik (2008)

*

Just because the experts couldn’t find it doesn’t mean there was nothing to find.

Doesn’t it seem noteworthy that a number of different retellings of this event make a special point of the peculiarity of that sole survivor who escaped the toxic sensation in that room and took refuge in his camper?
Why would this lone exception be worth mentioning?

It’s almost is if people can vaguely sense that there might be a clue to be found somewhere in this anomaly, but they just can’t quite make it out.

-Erik (2008)

*

It was a burning sensation that was the important thing.

The whole school was musty, but something happens at certain times that makes things a thousand times worse: the “acridity” that causes that weird burning sensation and that unleashes itself over and above the mustiness at certain times.

I’ve found this same effect in many other buildings. The way it works seems very consistent and gives me an effective means of escape.

If I run for my camper at these specific times, I manage to avoid the major brunt of the phenomenon.

My old teacher, Mr. Kennedy, was exactly right about getting out of that room, except that he didnʼt do it!

-Erik Johnson (2008, IAQ)

*

At North Tahoe H.S., they found the black mold in the wall immediately adjacent to the two teachers who were the sickest. It was a colony of Stachybotrys, about six square inches, roughly the size of a baseball.

That’s it. Just a dinky little mold colony.

But this wasn’t found until after CFS was already off and running and nobody ever bothered to look back at this little clue…. even though it was part of the circumstance that kicked off interest in clusters of CFS.

Iʼve been collecting mold stories from CFSers ever since, and I’ve got quite a pile of them.

-Erik (2009)

*

I put off reading Osler’s Web for a couple of years, because I had seen people misrepresent what happened and I thought, “Who is this Hillary Johnson? She wasn’t even here.”

But I was amazed to find out that her book bore out the facts in extraordinary detail.

Enough that if you add mold into the equation, it begins to make sense.

Hillary didn’t make many mistakes, but there is one small one on page 27.

If you read about the outdoorsman who had to get out of that teachersʼ lounge to feel better, Hillary says that he drove all the way to “America’s largest alpine lake.”

Well, not quite. It was only Donner Lake, about a half mile to the west.

Driving all the way to Tahoe would have been a 25 mile round trip.

But why is Donner Lake important… instead of just getting out of the school?

It’s because Donner Lake is upwind of Truckee High School.

Just getting out of the school and sitting in the parking lot wasn’t good enough to get clear and damp down the immune response.

-Erik (2009)

*

I would like to draw your attention to an abstract presented by Chester and Levine at the Albany CFS Conference.

Notice the inclusion of a somewhat peculiar thing to say.

“Nine out of the ten teachers who frequently used a single conference room in Truckee, California.”

Viruses don’t care if you are frequently in the same location. What should it matter?

Why even bother to mention that one teacher?

That one teacher noticed that the room was slamming the crap out of him, and he went out and sat in his camper, and it paid off.

He was using a direct intervention in response to the problem.

-Erik (2010)

 

“The Cause”

I never claimed I discovered the cause of CFS.

During the epidemic, I told Dr. Cheney and Dr. Peterson that I had a progressive and inexorably increasing reactivity to mold. I theorized that the reactivity was “infection induced.”

When they told me that CFS was viral, I asked why a virus would care about mold and when they said that it wouldn’t, I replied, “Then whateverʼs got me must be a bacteria because it seems to care a great deal about mold.”

I have no idea what causes CFS and am not qualified to find out.

All I know is that when I was fighting for my life and had nothing else to try, mycotoxin avoidance worked….and that I have never met a CFSer yet who failed to complain about the very clues that led me to try this crazy scheme.

-Erik (2004)

*

Mold cannot explain all the abnormalities in CFS, which is why I have always taken special care to say so.

-Erik (2006)

*

I have never claimed anything more than what I have seen and limit myself to the observations I make and can show to others.

I don’t use the words “causes CFS.”

I only say that the mycotoxin connection is a verifiable part of the overall phenomenon, but that it’s only visible to those who are willing to see and test the clues.

-Erik (2006)

*

Nowhere did I assert that mold is the sole cause of CFS symptoms.

I have I never even used that word “cause,” for reasons of the instant rejection that using this word induces.

For decades, I have said that I simply observed that others who were in the original CFS cohort shared a similar response to certain molds but they were unaware that it was mold they were responding to.

-Erik (2007)

*

People get so confused when I talk about my mold experience and still say that CFS is the exact illness that Dr. Peterson called the CDC for.

I never said mold causes CFS. Just that CFSers seem to be severely affected by mold.

All I was doing is taking advantage of this knowledge to reduce my pain as much as possible.

Since I’m one of Dr. Petersonʼs cohort that the strange Human B Cell Lymphotropic virus (later to be renamed HHV6 and then HHV6a) was found in, it’d be kind of silly for anyone to think I was saying that mold is the cause of everything.

What I said to Dr. Cheney and Dr. Peterson was that while they were figuring out what the “Yuppie Flu” thing was, I was going to exploit the benefit of avoiding the influence of that mysterious factor which blows in on the wind.

-Erik (2008, CFSU)

*

>Could EMF make us more vulnerable to Stachy?

Sounds like it could scarcely help but make one more vulnerable to Stachy.

But the same could also be said for a million other things too, and is being said.

So this is good fodder for a discussion group that has the luxury to sit around and talk about such things.

But for those who need to do something about their situation right now, they might want to put stuff like this on the back burner, or let the scientists handle it.

 

>But the scientists aren’t handling it. Insofar as the hypothesis is CFS = mold + something, what might that something be? Chemical toxins, EMFs or what? What is it that potentiates Stachy and makes it become so very harmful?

Might be all of the above and even more. But as I say, I haven’t been able to confirm any of it and am only acting on what I can observe and verify.

For all these years, I’ve seen that whenever I say, “Mold had this effect,” it somehow gets translated into “Erik says that mold is the cause of CFS.”

The context is put in such a way as to mean normal mold, which wouldn’t make any sense at all.

So I have learned the hard way to be very circumspect in my answers.

-Erik (2008, CFSU)

*

People just hear what they want to hear, so they can think what they want to think.

I keep insisting that CFS happened exactly as described in Osler’s Web, which means that we had a novel “HBLV” virus that Gallo-Salahuddin had just stumbled over in AIDS patients… and yet when I talk about “The Mold Connection to CFS,” people twist it into, “Erik says mold is the cause of CFS.”

Well, without the HBLV, the illness I think of as CFS wouldn’t be what it is.

So mold alone is clearly not what I am saying.

And I use the word “mediated” instead of “caused” to describe the effects of mycotoxins on the cytokine cascade.

Doesn’t work.

People just keep hearing, “Erik says mold – mold – mold is everything,” and there’s just no way to stop ’em.

-Erik (2008)

*

What I said was “an effect from mold.”

People interpreted this as, “Erik says mold causes.”

And since mold is well known not to “cause,” mold was ruled out and the clue was relegated to irrelevance.

-Erik (2009)

*

From the inception of CFS, doctors have told me that mold doesn’t matter, because this kind of reactivity is just the result of something else.

So I said, “Fine. While you figure out what that something else is, I’m going to stay away from the mold.”

There’s no doubt in my mind that this was a good choice.

Who cares whether it is a result of P450 decoupling or anything else, if one can stay away from it and get a life back?

-Erik (2010)

 

Immune Responses

AIDS patients know that when their CD4/CD8’s fall below a certain ratio, their viral titers shoot up and secondary infections emerge.

Sometimes treatment of these infections restores enough immune surveillance to restore the ratio and knock down the virus.

So there may be many avenues for treatment that don’t specifically address the fundamental dysfunction but have an apparent effect.

I suspect that when CFSers try some crazy thing that has a wondrous effect, as mycotoxin avoidance has for me, it is just finding one of many ways to climb one rung up on the immunological ladder.

I didn’t say that mold was the cause.

I said that the vast commonality of this irritant is a clue to the etiology of the illness.

-Erik (2005)

*

Sick Building Syndrome does not necessarily result in CFS, but it appears to be a potent co-factor in our little phenomenon.

Toxicological data is lacking because it is predicated upon cell lysing from measurable amounts of applied toxins. Not applicable here.

This is a genetic reprogramming of immune response.

In SBS, you don’t see specific “mold illness” where everyone falls apart in the same way. You see people inexplicably dropping from all kinds of things that have one thing in common… they all manifest an unexpected pathogenesis from infections that “shouldn’t be doing this.”

But if a powerful virus happens to go through town, it just might be possible that it hits some people a bit harder than others.

In certain specific places.

-Erik (2006)

*

Since the beginning of the CFS epidemic at Truckee High school, I’ve seen people fall apart from transient “minor” infections in sick buildings.

The infection that the doctors identify always gets the blame, even if it lacks the pathogenesis to create the level of illness that is observed.

Doctors see each case as individual, and tend to disregard the clue that a number of people fell apart in a specific location.

If they don’t see an infective cause and the toxin doesn’t keep creating the same effect, the relevance of the environmental exposure is regarded as incidental or inconsequential.

It is only when one understands that these toxins literally shut off immune response does it become clear that the apparent infective cause of these illnesses manifests its unexpected intensity as a result of an opportunity created by the combination of toxin-induced immune paralysis and otherwise minor or benign organisms that may be passing through.

-Erik (2006)

*

The mistake that virtually everyone made was thinking that this was just an individual problem.

They completely ignored the mold exposure and focused all their efforts on testing “what’s wrong with YOU.”

What they didn’t stop to consider is that immune dysregulation from exposure to what is essentially nerve gas is not the abnormality.

It would be abnormal if one had no response at all.

-Erik (2006)

*

Trichothecenes shut down immune response, so it’s not a matter of a particular “mold” feeling as much as having a peculiar onset and persistence of various problems that got the better of you in a very unexpected fashion – and most likely in a particular place.

The term “CFS” can be traced directly to Dr. Cheney and Dr. Peterson noticing a peculiar onset of illness at Truckee High School.

I’m a graduate of Truckee H.S. and the place was a slammer. Still is.

It didn’t “create” CFS, but the premises seemed to have a peculiar capacity to “enable” what happened there.

As Byron Hyde has noted, ME seems to have a peculiar association with such settings, as in:

Royal Free.

Mercy Hospital.

LA hospital.

North Tahoe High School.

Elk Grove.

-Erik (2006)

*

There’s a well-known pox virus in AIDS called Molluscum Contagiosum.

It’s a childʼs disease, easily controlled by a normal immune system.

The AIDS researchers know precisely what CD4-CD8 ratio allows the poxvirus to blaze into activity.

Virtually anything that boosts immune function just barely over the threshold that keeps Molluscum in check will drive it back into latency.

It doesn’t matter what it was that boosted the immune system – could be just about anything.

If one didn’t know this mechanism, people trying to “cure” Molluscum Contagiosum would see success by many different “cures” and give credit to each one that worked indiscriminately.

In 1985, when I told Dr. Cheney about this weird effect, he said CFS was viral.

I just replied that for some reason, mold had a specificity to it that made it worthy of investigation.

That specificity is the reactivation of latent infections of almost any sort.

-Erik (2007)

 

Herpes Family Viruses

>If 300+ students were out with “mono” at the same time, wouldn’t that also sound like a sick building syndrome?

It would raise the suspicion that toxigenic mold may have been a factor in unleashing a peculiar cluster of noticeable mono in people who share a specific location.

I remember a restaurant that was being spore plumed enough to give me a very bad time in which all the employees who had herpes broke out in simultaneous flare-ups while the plume was especially active.

Everybody remarked upon how strange the simultaneity was, but they couldn’t feel the mold the way I could and were unaware of the connection.

-Erik (2006)

*

Six years ago I was trying to engage the interest and cooperation of a CFS doctor in Reno to assist me in researching the mycotoxin connection to CFS.

As I related some of what I have seen with myself and other CFSers, he suddenly stood and asked if I would come with him to a certain room.

It was a mold slammer.

Turns out that everyone that spent too much time working in that room became ill.

He had been forced to make it a storage area.

I talked about the many viral reactivations I’ve witnessed when people are hit with mold plumes, and one of his staff who had been listening suddenly chimed in that he had been gradually losing energy and stamina while he had been at this job – and had a
work-up done which showed elevated EBV titers.

The doctors had been puzzled at this since he didn’t have an onset of mono, yet for some reason he appeared to be on the edge of a full-on reactivation.

This is what I saw in Incline as well. People in mold plumes would suddenly drop from one of any number of viruses – and the virus always got the attention while the mold exposure was discounted and disbelieved.

-Erik (2006)

 

Neurological Inflammation

I discovered years ago that I have an extreme neurological reaction to unbelievably slight amounts of specific mold toxins.

Mold is prevalent and difficult to avoid.

After years of trying to avoid mold based on expertsʼ concepts of where mold is supposed to be, I realized that I was going about it in the wrong way.

My perception of exposure was the best indicator – not any tests.

I trained myself to recognized subtle symptoms of exposure by deliberately testing myself against various mold colonies.

I quickly found that a particular mold, Stachybotrys, had an absolutely devastating effect on me.

Soon, thanks to my ability to perceive it, I could feel that a vast number of people in CFS support groups carried either this mold or a lesser mold of higher toxin concentration on their clothing and were probably suffering a long term inflammatory response in the same way I was.

By avoiding this long-term inflammatory response, I have exerted more control over my CFS symptoms than anything else I’ve tried.

People always take this to mean that I am trying to assert that mold and the mycotoxins from mold spores are the cause of CFS.

Mold is not the cause!

The profound nature of the inflammatory response to this class of toxin is the cause of my symptoms.

I believe that identifying the mechanism that induced this abnormal response is the key to understanding this illness.

I have never claimed that other neurotoxic irritants like pyridostigmine bromide cannot have a similar effect.

I am claiming that I feel mold on enough PWC’s clothing to believe that constant neurological inflammation from prolonged exposure to mycotoxins produced by various molds is the driving force in many people symptoms.

-Erik (2003)
*
Stachy is a potent and prevalent producer of neurotoxins.

Although there certainly are many other neurotoxins, Stachy has emerged as one of the most problematic.

Mycotoxin reactivity is an aspect of MCS.

Why do I focus on the role of Stachy in the “Feel Good Places” effect?

It’s because the neurotoxins from Stachy are contained in spores which can be carried with you long after you leave a contaminated area and be a driving force in neurotoxin mediated illness.

These spores seem to be one of the most difficult MCS triggers to avoid.

Not just in specific buildings, but “ambient levels of mycotoxins” based on the prevalence of spore plumes in a region.

That’s the basis for my extreme mycotoxin avoidance strategy.

Itʼs not a cure, but it beats the heck out of the alternative.

-Erik (2004)

 

Infection Induced Reaction

I would like to make it perfectly clear that Stachybotrys chartarum is not the cause of
CFS.

If you have the immune defects that predispose for CFS symptoms, Stachy and other
toxic molds will knock you flat.

This illness induces an hyperreactive response to levels of irritants that are considered ambient and safe for anybody else.

-Erik (2001)

*

I never believed that mold caused my illness and told Dr. Cheney and Dr. Peterson this the very first time I walked in their door during the epidemic.

I described it as “an infection induced reaction to mold.”

I realize full well that despite mold avoidance, I still have the illness.

But just as being around mold makes you feel worse, being away from ambient levels of mold makes you feel better.

This is the source of the “feel good places” effect.

-Erik (2004)

*

I’d like to point out that the gene expression paper noted this little peculiarity:

> The vulnerability of EIF4G1 to virus modification may have particular importance for
the development of CFS after an acute virus infection 40.

“An induced reactivity to mold” was the first thing I said at the beginning of the CFS
epidemic after that “flu-like illness” whipped through town.

It now appears that viral encoding of gene expression may be capable of achieving this
type of effect.

And if you believe that the Ciguatoxin antigen epitope test is detecting similar ionophore toxins of the neurotoxin class, then an abnormal response to OP pesticides, mycotoxins and Lyme neurotoxins are all grouped under the same susceptibility consistent with this dysregulated gene.

I wouldnʼt be too surprised to include thimerosal susceptibility and Autism in this group.

This is why I keep saying that this is an illness of “induced susceptibility” rather than an overdose of stress and stressors, and asking people not to blame the car that was on the bridge when the bridge collapsed.

-Erik (2005)

*

A variety of new conditions are linked not by mold, but by the commonality of an almost unprecedented and mostly unknown reaction to levels of neurotoxins that are considered benign exposures.

It is the lowered threshold of susceptibility to a response to neurotoxins that links these groups.

And all within a suspiciously short time!

It’s kind of a strange concept to identify the spread of an unknown quantity not by specific infections, but by looking for reactions of all varieties that are out of the normal range of human response and that are connected by proximity and timing.

But that is the effect that I am seeing.

-Erik (2005)

 

As I said to Dr. Cheney at the beginning of the CFS epidemic, this seems to be “an infection induced reactivity to mold.”

It appears that the susceptibility is innate, waiting to be unveiled by some opportunistic cytokine cascade.

As a dental lab tech, I got to watch the dentistsʼ response when oral problems did a sudden paradigm shift.

They saw the metal toxicity, hypoperfusion and increased risk of endodontic failure.

Some even saw the cavitations, although most went into a strange denial and said that this was an unprecedented fluke which they would likely never see again.

Even after seeing multiple cavitations, it’s as if their brains switched off.

They would refuse to admit that this was something new in their experience that was increasing
dramatically.

They blamed patients for bad diet, alcoholism, or drug abuse, no matter whether these factors were present.

In a child, it would be “genetics” or too much junk food.

Sufferers could protest that their diet and behavior patterns was no worse than others who were not suffering similar problems and the knee-jerk response is, “If you have these problems, then you must have!”

-Erik (2006)

*

Dr. Shoemaker talks about the unveiling of mold susceptibility by Lyme and other
triggers.

Once you are primed for a response, even if you clear the infection, the continued presence of mold/mycotoxins is a driving force in your continued inflammatory response.

-Erik (2007, CFSExp)

 

Multiple Assaults

> The human body usually works very well handling one problem at a time; sometimes it
even handles two problems or assaults at a time. When it is broadsided with several
assaults, it often fails.

> Looking for clustered assaults will likely be the way to go. Mold and cleaning products, after a flu or pneumonia, has been a serious problem in my experience.

Precisely.

This was the very question that medical professionals failed to ask at the inception of
Chronic Fatigue Syndrome.

-Erik (2008, IAQ)

 

Related Illnesses

I don’t believe that mycotoxin reactivity addresses a more restrictive patient population.

I believe it may represent an inclusive precursor condition that is a much larger problem than anybody recognizes.

Mold reactivity is not obvious and many mold sufferers have literally been carried out of their house on stretchers without figuring out the connection.

I have argued against subsets and advocated a more inclusive definition and approach to the study of CFS, especially because a susceptibility to mycotoxins is a common denominator I see in the vast majority of people who are diagnosed with different definitions or names that attempt to define this concurrent set of abnormal complaints that so many are now screaming about.

No matter how many times I repeat that mold is not the cause but that mold reactivity is the result, people still say, “So you’re claiming that mold causes your illness.”

No, it’s a trigger for the symptoms – not the underlying pathological process that initiates the abnormal response.

I’ve seen people wearing respirators into a contaminated shopping center, though why they would continue to shop there after discerning the connection to their illness is a mystery to me.

I see this so routinely that I would be surprised at this point to find anyone diagnosed with CFS who is NOT reactive to mycotoxins.

What does this mean?

It means that when no doctor can prescribe any therapy or means of reducing your symptoms, there may still be a way to control a significant amount of neurological inflammation and symptoms by a concerted effort at reducing mold exposure.

-Erik (2003)

*

A couple of years ago, a now defunct list “AutisMoldFungalResearch” explored the link between mold and autism.

Parents and they described the symptoms of mold reactivity in their Autistic children perfectly.

However, when I told them the importance of avoidance, they would contact their doctors and be told that this was “Impossible” or that the level of avoidance that I say is necessary to obtain good results is beyond the constraints of a normal life and is unreasonable to attempt.

I agree, but I wasn’t given a choice.

-Erik (2004)

*

Have you seen what is happening with “Mold Hysteria”?

The doctors are fighting with Moldies just as they did CFSers and telling them that this type of reactivity is impossible and has no physiological basis.

Sound familiar?

I don’t see CFS, SBS, GWI, MCS as being heterogenous.

They are all linked by the common denominator of an unfamiliar and totally disbelieved reactivity to what is considered to be harmless levels of neurotoxins.

-Erik (2005)

*

Thanksgiving is kind of an important day for me moldwise.

Every year, I went to a relativeʼs house for Thanksgiving and would fall apart.

Every year, I was more determined to psychologically tough it out and not let the damned place get to me. Yet every year, it got worse.

Naturally, all my symptoms appeared to others as purely psychological.

Finally the lady of the house was diagnosed with CFS, although her complaints were the palest shadow of the real-deal postviral syndrome.

Then her husband started having serious cardiological problems.

I refused to set foot in that house again.

One beautiful summer day, he decided he felt good enough to do some chores he’d

been putting off – like fixing that leaky pipe under the house that had mold growing around it.

So he got out his tools and crawled under the house.

No sooner did he come face to face with the water leak when all motivation disappeared and exhaustion overtook him.

He crawled back out from the house, went into the living room to sit down and rest for a spell, and just stopped breathing.

Years later, the lady of the house was out vacationing and reveling in her amazing energy that was somehow completely lacking when she was at home.

When I remarked upon how consistently this wonderful feeling she had corresponded to being away from
the house, she said, “I wish I could stay on vacation all the time and never go home.”

So we discussed the specific timing of her husbandʼs death and although the doctors don’t believe a word of it, there is certainly no doubt in her mind what truly caused his heart to stop.

She has since decided to take that permanent vacation from her house and has never returned.

She’s gone from being semi-disabled with fatigue to a world traveler and is having a great time.

Curious that Dr. Cheney’s work has centered upon cardiological anomalies, because heart palpitations have always been a consistent feature of mycotoxin exposure for me.

My own heart would go wild with palpitations when I was in that house.

Glad I decided to go the path I did.

I have a lot to be thankful for on Thanksgiving.

-Erik (2006)

*

While out mountain biking the Downieville Downhill, an awesome single track near the Sierra Buttes that is well worth doing, I met a girl who described an unusual experience with her health.

She said that she felt really ill during the normal course of her job and home activities, and was much improved by getting out and about.

(Who ever heard of such a thing?)

She said that she took a long vacation and felt energized and healthy during her entire furlough but that as soon as she got home, she started to fall apart again.

This was prior to Melinda Ballard’s USA Today front page headlines, which was really the turning point when total rejection of the mold concept started to become, “I think I heard of that somewhere.”

She listened to my story, and I could see it really made her think.

I warned her of the dangers of do-it-yourself remediation, but this is something that just never seems to
make an impression on people until it is too late.

I met her again months later at Spooner Lake, the starting point for the famous Flume Trail, a single track carved right into the mountains on the east side of Lake Tahoe.

While we rode, she told me the follow-up to her peculiar illness story.

She made the correlation of feeling the most crappy while in her house and started to snoop around.

She found that her basement smelled the moldiest and pulled up a corner of the carpet that covered the cement floor.

To her horror, it was covered with black mold.

Certain now that my story wasn’t as farfetched as people think, she immediately pulled up all the carpet and threw it outside.

The exertion seemed to have been more than expected, for she passed out with fatigue afterward.

The next morning, she could hardly get up, but dragged herself to the bathroom and looked in the mirror.

And that was the last thing she remembers before waking up in the late afternoon on the floor.

She was dizzy and nauseous, couldn’t see clearly, and realized that she couldn’t move and was almost completely paralyzed.

She just lay there for hours unable to raise herself or do anything but wonder what had happened.

I can’t remember if she said that someone found her or if she was finally able to crawl to a phone, but she wound up in the hospital and was told she had suffered a stroke.

I asked if she had informed her doctors about her illness, the mold, and the coincidence of pulling up the carpet.

She said that she had, but that the doctors didn’t think anything of it.

She has never totally recovered.

This is a 38-year-old who was healthy enough to do a thirty mile bike ride.

This is how it goes.

Nosebleeds, fainting, asthma and anxiety attacks, strokes and heart attacks – all after a mold exposure, and every one of them is just a fluke in the minds of doctors.

-Erik (2006)

 

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