>I do know several people who have recovered anywhere from 70 to what one calls 1000%(!), but getting them to talk about it might be difficult, as it seems like many (like Mike Dessin) have told their stories only to be harrassed off boards by people questioning if they ever had 'real' CFS. Of these five or six people, I know one had MCS as part of her CFS/ME, and one did have serious mold issues at one point in her illness, but they resolved when she moved to a different house. All of them used many different means to heal and recover, because they all had different issues/triggers/sensitivities.
In December 2007, Mike Dessin and Erik had an e-mail conversation. Erik's comments are below.
In early 2009, Mike had moved from his very moldy house in California to his father's place in Columbus.
He concluded that his dad's residence had mold in it, and so he insisted that his father find a different apartment for him. He then followed Erik's instructions of discarding every belonging that he owned.
Immediately after that, he started neural therapy. At first, because he was unable to move, the practitioner came to his apartment. Mike asked the practitioner (who appears to have a sense of such things) if the apartment was okay in terms of mold, and the practitioner stated that it was.
By summer 2009, Mike was well enough to make his story public.
In July 2010, I visited Mike in his current residence in Columbus. The home was excellent in terms of the presence of toxic mold indoors and acceptable (without a trace of the biotoxin that I have been calling the "?") outdoors. This was so unusual that I asked Mike if I could stay there for a while, and ended up babysitting his dog Dixie (a delightful beagle) while he went on a trip.
I'm not saying that mold avoidance was solely responsible for Mike's recovery. I've done a huge amount of neural therapy myself over the past two years and am aware of its power.
What I am saying is that, as a preliminary hypothesis, I believe that it is impossible for an ME/CFS sufferer to recover if s/he is in a home that has substantial amounts of Stachy in it or getting any sort of regular exposure to the "?".
Whether people absolutely need to discard contaminated belongings in order to get to a full recovery is unclear. I don't have enough cases for that.
However, Floyd is only a moderate responder, but the sole remaining contents of his bad home knocked both of us for a loop when he opened the plastic box they were in. On another occasion, he was bothered so much by a used book he picked up that he felt the need to discard it from his car. (It bothered me too.)
So far, the recovered ME/CFS'ers I've interviewed have mostly/fully recovered after moving to into a home that they insist is excellent with regard to toxic mold (either as a result of testing or because they know they're reactive to it in general). They then have pursued other treatments (antibiotics, antivirals, herbs, candida control, methylation detox, spiritual healing, avoidance of chemical triggers, etc. etc.) and gradually improved.
In the cases I've seen so far, people have either gotten rid of their contaminated belongings or not substantially improved until five years after moving to what they state are good residence(s). Erik suggests that it takes about five years for contaminated possessions to die down, so this is consistent with his observations.
Of course, if people don't improve until five years after they think they are clear of mold, they're not going to attribute their recoveries to the avoidance of it.
I'm not suggesting that people can get well solely through avoidance. I'm suggesting that the more free that people are of biotoxins, the more likely they are to have treatments of any sort work, and that at least moderate avoidance is necessary but not necessarily sufficient for wellness.
I'm also open to the possibility that once people with ME/CFS have achieved wellness, they may be able to maintain that wellness without the need for anything but "mild" avoidance (e.g. not living in places that would lead to other currently healthy people getting sick). Since I now can be around substantial amounts of toxic mold myself, and since most places are not substantially influenced by the "?", I actually almost fit into that category myself.
Again, so far, I have only anecdotal case studies. I am not insisting I am right in my hypotheses. My only goal is to make a case that the phenomenon is worthy of rigorous scientific research.
Thanks very much to those who have suggested further potential interviewees. Again, I welcome any suggestions that people have.
A compilation of Erik's writings is available. If anyone wants a copy, please let me know. A few comments from it are below.
Best,
Lisa (slayadragon at ya-hoo)
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Mike-
I've read your description that you are going to die.
Without knowledge of the extent of your organ damage, I can't venture an opinion, but I remember Dr Erich Ryll's description of his Infectious Venulitis '75 cohort was exactly the same as our "Incline Village '85" CFS epidemic: We all believed we were going to die - were looking forward to it, as there was no relief in sight, and woke up every morning amazed that we could suffer so much and NOT have died during the night
I know of quite a few people who have abandoned their belongings and moved to a "feel good" climate/location and have gone from bedridden and feeling absolutely doomed - to recovering somewhere between 80-90%. Did you see that Bunchy described going to the coast and feeling "50% better"?
Right now, I know a gulf war veteran who "hit his limit" of toxicity up here at Lake Tahoe (of all places) and has gone to the coast for some fresh air - because he has learned by long experience that he can make an amazing recovery there
I built a "Mobile Environmental Control Unit" for myself - with Hepa filtration to pressurize the interior - which is constructed of mold resistant metals and plastics. It looks like a normal RV, but is entirely customized.
This has been so miraculous, and I see so many other people complaining of exactly the same clues which led me to do this, that I have no doubts at all that vast numbers of these people could experience a similar level of recovery - if they act before their organ systems are irreparably damaged by chronic inflammation.
I'm sorry to hear about your advanced condition - but I can't help but wonder that even at this stage, if you were to get to a really "pristine" area for a detox, as Dr Myhill suggests, that at the very least, some of your suffering might be decreased. If only more doctors would get on board with this, an affordable "Detox Center" might be devised. It wouldn't take much. Even a tent in the desert has been enough to allow a significant number of people to crawl back from a really low point.
Thanks for being one of those who thinks I'm not totally full of crap. Means a lot to me.
-Erik (2007)
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Mike-
No. A mold specialist cannot help. This reactivity is just like the peanut allergy I described in Mold Warriors.
Just a few molecules in the wrong place can knock a person flat. Like a knife that was used to cut a peanut butter sandwich and then used on a sensitive person's sandwich. Or that girl in Canada who died after ksssing her boyfriend - who had just eaten a PBJ.
I was in a mold zone yesterday and put my shirt aside. This morning I held it up to my face - and sure enough, it has the "badness" on it. Doesn't feel all that killer at first. Just heart palps and a slight feeling of "brain compression".
But that "badness" adds up, and eats away at you over time.
That's the major difference in what I did. My military training told me to control for "cross contamination."
Our CS gas was just like this. If you hung up your jacket without washing it and it was touching some other clothing, that little bit of contamination would slam you later. The biowarfare instructor would tell us, "Some dumbass is going to think he doesn't have to wash his stuff because it doesn't seem to be all that bad. They just have to learn the hard way."
Sure enough - they would put on something later and start yelling.
I remember a gal who had suffered for years - tried everything in the book - and suddenly she just started to recover. She had no explanation for it, and said "Absolutely nothing in my life has changed, except that my husband retired and is hanging around the house all day."
Well, it sounds to me like she instinctively "hit" on exactly what changed. Her husband was no longer going into a Stachy infested workplace and carring the spores home to kick her ass.
Yes. That is all it takes. This mold reactivity is a mothaf***ah.
-Erik (2007)
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I got slammed while on a construction project in Berkeley in 1980. It was on the UCB campus, right next door to the School of Law.
While I was feeling so lousy, a guy that I was going to meet for lunch to hear his WW2 stories walked in the front door, downstairs, apparently very chipper and feeling just fine.
Not a sign of what was about to happen.
Poured himself a cup of coffee, sat down, had a massive heart attack and died on the spot.
Since I felt bad and my heart was pounding after walking in the door, I didn't think it was a coincidence, but nobody believed me.
After all, "Mold is just an allergy, and even if his heart attack was triggered by a mold allergy, that just shows that it was his time to go because allergies don't kill anyone.”
Two other people on our crew became ill and started going to doctors.
One was a plumber, who suddenly acquired a reactivity to poison oak that he hadn't had before. The other was an electrician who started feeling tired all the time and became so reactive to wheat that his doctor told him that he had to give up all sources of wheat... including beer, which sounded to me like a fate worse then death.
I just couldn't seem to shake that slam.
I started going to doctors. They had never heard of anything like this.
Seemed like every time I went into a bad building after that, not only would I get knocked for a loop, it was a guaranteed nosebleed.
-Erik (2009)
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The first person I saw who described this illness to me perfectly was in 1980 down in the South Bay Area, not too far from Silicon Valley.
Five years before I saw it sweep through Incline.
It wasn't the illness that was unbelievable, it was the response of people around her. I saw people choose what to believe and completely ignore her physical appearance and everything she said.
She obviously had no name for this, but different people could look at her and the reaction ranged from "obviously ill" to "can't prove it.”
But I was there the day she hopefully went to a doctor who had seemed sympathetic and returned home in tears, totally devastated.
She told us that the doctor had diagnosed her with "Doctor Seeking Behavior,” a mental illness in which people wander endlessly from doctor to doctor trying to obtain validation for their imaginary complaints.
The doctor said, "She believes her illness is real and the worst thing you can do is feed into it by validating her.”
And then a peculiar thing happened. Those who had been believers and said the illness was "obvious" showed no backbone to their beliefs and went mentally limp, while those who tended to the "can't prove it" went wild in their righteous condemnation and denial - totally confirmed by the Godhood of Doctordom.
I just about lost it and yelled, "Look at her. Look at her.”
Here's where it got interesting. The few who had initially supported her stood silent while the denialists showed the greater fortitude and focused all their "if the doctor says" BS on me.
Nothing less than a baseball bat was going to alter their opinions, and since I didn't want to go to jail, there was nothing much I could do.
But a silent rage built up in me, and I said to myself, "If such a thing should ever happen to me, they wouldn't do that to me. I wouldn't let them! For there must be a lower threshold to stupidity that even these people cannot descend below. It would be impossible to watch an athlete be overcome in such a way and reach that ridiculous conclusion. To apply something like that to someone like myself would be too far beyond the pale, even for idiots like these.”
And then it happened to me!
-Erik (2006)
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>You stated that the first time you met someone with the disease that later was named CFS was in 1980. Where did she live?
It was in an apartment complex, south of San Francisco Bay, that was full of people complaining of mysterious rashes, illness, and sudden deaths.
Doctors couldn't find anything wrong, and as far as I know, the concept of sick building was never even brought up, as if all of this was some kind of bizarre coincidence.
I was visiting, and the place just beat the crap out of me.
I didn't know her at all, just that her complaints had a familiar ring. When she related how badly the doctor treated her, it made me angry, because this place surely had the capacity to put me in the same position.... given enough time.
All I later heard was that she moved out and got better.
-Erik (2009)
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My "sudden onset" actually started when I inhaled a blast of mold, so I knew for sure that mold was a significant factor.
It was August 1984. I can’t remember the exact date, but I was out in some sand dunes on the coast and suddenly the whole world turned sideways.
This was such a strange sight to see that I didn't even realize that it wasn't the world turning sideways until the side of my head hit the ground.
I went, "Whoa! That’s never happened before."
That was the first utterly neurological sign that something was wrong. I just suddenly totally lost all perception of balance.
I did not have any head injury at all. This was soft sand.
I had plenty of mold slams before that, but this was like nothing I had ever felt.
That's when I went to see Dr. Cheney.
When you read Dr. Hyde’s description of ME progression, he talks about these precursor episodes before fully descending into illness.
I didn't get the full sore throat and all other CFS symptoms until a year later. Since no one was listening to me about these precursor problems or about the mold, I thought that eventually when CFS researchers began to research CFS, I could tell them about it.
-Erik (2010)
