Mold, Dr. Cheney and ME/CFS

Washing Moldy Items

The first experience that I had that convinced me that mold was really a problem for me was when I'd been out of my house for a couple of weeks. That was when I started to feel ill (nausea, heart beating fast) as a result of being around clothing that had been put through the washer and dryer of the relatively okay place that I was staying.

It seems that the poison that these molds make sticks really well to things. It can be really hard to remove even from solid objects. Plastic (which apparently actually has lots of little holes in it) can be especially tough.

Feeling "a little sick" around objects seems like it shouldn't be a big deal. But those acute reactions are the only ones that provide information that the objects are contaminated, and thus that may cause more severe long-term effects.

If objects are transiently contaminated (e.g. in a bad building for a day), they tend to clean up comparatively easily. But if they've been in a bad place for a long time, it's conceivable that no amount of washing may remediate them.

Some people have managed to reclaim all their belongings after they've been in storage for a long time (3+ years). Others have been less fortunate.

My own reactivity has gone down to the point that objects in general don't have much of an effect on me, so I think I will be able to reclaim some stuff. But I'm sure that wouldn't have happened if I'd not been extreme about avoidance upfront.

Keeping clothing (especially shirts) and bedding as pristine as possible is important, since those items are close to the face (where the poisons can be breathed in) for extended periods of time.

Honestly, this is the stupidest way of getting well from CFS that I ever could have imagined. I wish somebody would come up with a better solution.

Lisa

 

Canadian Criteria Symptoms

Gerwyn requested that I go through the Canadian criteria for CFS and give him an idea of what symptoms had improved for Erik and for me as a result of mold avoidance, so I went through the list.

I’ve also gotten a bunch of questions about Erik: was he really sick with "real CFS" (yes, severely), is he really recovered (yes, except he has to make a ridiculous effort to avoid mold), does he live in the Godforsaken desert by himself (no, he lives in Reno, “The Biggest Little City in the World”), is he working (yes, full-time), what else has he done to get well (absolutely nothing, “avoidance alone”), how long was my visit to see him (a week), what is he like in person (MUCH nicer than he comes across on these boards), why haven’t doctors told people about the fact that he got well through avoidance (I don’t know).

So here’s the info about the Canadian criteria symptoms, along with Erik’s description of what it was like when he first got sick in the Incline Village epidemic in 1985.

Best, Lisa

*

Canadian Criteria

1-3. Fatigue, PEM, Sleep Dysfunction.

Erik and I had all of these, each with very severe symptoms (mostly in bed, rarely going out) for 1+ years.

4. Pain.

Erik and I both had muscle pain. Mine has been specific to trigger points, though not (usually) as severe as what FM sufferers experience. He had horrific headaches regularly. I almost never had headaches of any sort, except for a once or twice a year when I’d have horrific ones (unlike any I had pre-illness).

5. Neurological/Cognitive: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances -- e.g. spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload phenomena: cognitive, sensory - e.g. photophobia and hypersensitivity to noise - and/or emotional overload, which may lead to “crash” periods and/or anxiety.

I didn’t have the ataxia or muscle weakness, at least not to an extent that was noticeable to me. My coordination in general was poor though. I had significant confusion, disorientation, spatial instability/disorientation/inability to focus vision when I took a small dose of doxy late in my illness, but not other than that. I had all the other symptoms.

Erik had all these symptoms.

6a. Orthostatic intolerance - neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspepsia.

My bp was low (e.g. 85/55). It and the resulting lightheadedness was helped by Florinef. I didn’t have the nausea or IBS (I was constipated unless I took 10+ g of vitamin C per day) or bladder dysfunction. My skin was pale, but I don’t know about the “extreme” characterization. I had extreme thirst and somewhat frequent urination. My digestion was problematic (tested hypochloridia, many abnormalities on stool tests), but I don’t know if it was specifically “exertional.” I didn't notice heart symptoms, but never had any tests to rule cardiac issues out.

Erik had all these symptoms except the bladder dysfunction.

6b. Loss of thermostatic stability - subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities, intolerance of extremes of heat and cold, marked weight change - anorexia or abnormal appetite, loss of adaptability and worsening of symptoms with stress.

I didn’t have the subnormal body temperature consistently, but for a time late in my illness my temperature swung a few times a day between 98 and 100 degrees. My weight varied - I usually was overweight (compared to pre-illness), but I felt unable to eat anything and spontaneously lost 50 pounds (so that I was significantly underweight) over the course of a year. I had the other symptoms.

Erik had all these symptoms.

6c. Tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.

I periodically had a sore throat that I described as “feeling like I’m getting the flu,” but then it would go away. It wasn’t severe though. “Recurrent flu-like symptoms” were in the area of malaise/cytokines (not vomiting). I had the others.

Erik had all these symptoms.

7. The illness persists for at least six months. It usually has distinct onset, though it may be gradual.

I had some of these symptoms starting in 1994. In early 1996, I got a bad “flu” and developed most of them (plus the usual CFS lab tests) in moderate severity. In early 2007, I got a very bad cold and had much more severe symptoms for the rest of the year (until starting mold avoidance in December).

Erik had some symptoms periodically for a few years, and consulted Dr. Cheney about them in fall 1984. In summer 1985, he got the “Yuppie Flu” that was followed by very severe illness. He partially recovered (he says as a result of moderate mold avoidance) from 1986-1994, relapsed to severe illness, then started “extreme” mold avoidance in 1998 and recovered.



Every single one of these symptoms, except some of the cognitive ones and a few associated with detox (below), has resolved completely for both Erik and me insofar as we pursue toxic mold avoidance scrupulously.

All the symptoms start to come back with re-exposures to mold, and then dissipate quickly when mold avoidance is resumed.

Most of these symptoms improved substantially for each of us within 6-12 months after starting avoidance. The rest resolved in less than two years after starting avoidance.

Except for one time when I made the mistake of visiting Lake Tahoe/Truckee without Erik's guidance (the mold situation there is really bad), my progress has been a straight line up with no relapses.

Except for a short period when he decided to try living with a girlfriend in a house that he already knew was too much for him, Erik's been well with no relapses since 1998.

Even with scrupulous mold avoidance, concentration, short-term memory consolidation, and difficulty with information processing/categorizing have not fully resolved. Erik says that he is unable to do any math at all (he passed the pilot's exam prior to getting sick and so used to be proficient), and my own math abilities have not fully recovered either.

My remaining cognitive issues (especially with information organization and integration) have improved with Valcyte. Some days, it feels like I’m almost at pre-illness. Others, not so much.

A few other symptoms (sweating episodes, trigger point pain, downturn in energy, grogginess, alcohol intolerance, nausea) can resume when detoxification is aggressively pursued.

A number of other people who met the Canadian criteria have partially or fully recovered as a result of extreme mold avoidance (using Erik’s techniques) as well. Their experiences with the symptoms recurring with renewed exposures and (in most cases) the cognitive area remaining a weak point are the same.

*

As far as an induced response to prevent exercise goes, the nature of the fatigue would be extremely counterproductive to survival at the level of exercise intolerance experienced during the Incline Village epidemic.

It was almost impossible to feed yourself. People who didn't have help resorted to canned food, often eaten cold, or things that required virtually no preparation. Many people expressed how difficult it was to maintain proper nutrition without the ability to prepare it.

As is so often described, the fatigue didn't feel like an energy saving strategy. It was literally as if the mental commands failed to elicit a response.

People generally do not have to will a response for simple things like reaching for a glass. In this instance it felt like you were operating a mechanical arm had to literally concentrate on directing the action. The mental effort required to force the body to respond was so great it was as if you had to perform a complex mathematical calculation to be rewarded by enough function to crawl to the bathroom.

I was able to stand up for most of the time, but was unable to predict exactly when those times would be when I could not. Very frustrating.

Long term memory was fairly intact but short term was almost nonexistent. Most people I knew could not remember their own phone number unless they had it a long time. Learning a new one was out of the question.

Looking out of your eyes was like watching a movie. It took a great deal of effort to try to connect with reality. If you had enough energy to drive, it often seemed that you could drive off a cliff and it wouldn't affect you personally.

I had absolutely the worst sore throat I've ever experienced, as did we all.

Made eating incredibly painful for years. I've never recovered from it completely.

It took a hat and dark glasses to go outside. The light from a single LED from an alarm clock would fill the room with a glare that was unbearable at night.

Reading was out of the question. If you tried, you'd find that you had been reading the same paragraph, over and over.

The glare from normal light on book pages was too much.

No TV: seizures.

No lights in the room: they burned your eyes.

No music: it hurt your head.

And that's not the half of it.

There was nothing but pain and disbelief in our lives.

-Erik (2004/2010)

 

"A number of other people who met the Canadian criteria have partially or fully recovered as a result of extreme mold avoidance (using Erik’s techniques)"


This may seem obvious, but how do you avoid mold? What are Erik's techniques? Where do you begin? Mold could be anywhere, it seems a daunting, (though obviously worthwhile), task.

 

Plastic, books, paper and electronic items seem to get really badly contaminated by stachy, or they did in my place. I couldn't rehabilitate them. They were ruined. I'd have the same horrible instantaneous reaction around them that I was living with and thought was due to lyme only, in my place: profound depression/rage, that was instantaneous. Lisa says Erik calls this the depression response, and its the first early warning sign that you're around "bad" mold, and you should get away, as your immune system will be affected shortly.

Or something to that effect. I'm paraphrasing and could be making some errors in my understanding.

Other items seemed quite fixable. Wool seems really mold/toxin resistant. Certain cottons with spandex seem pretty good. Other clothing items need much washing to be fixed. I wash in really hottest water, with biokleen, and then after that, hottest water with fresh lemon juice. Fresh lemon juice is really excellent for degrading any spores. I air dry, in the sun when possible all day. Don't use a dryer and Lisa says those aren't good.

I really don't understand it all. I was so affected in my apartment that my laptop seemed fine and it was so small anyway...and ultraportable...once I was out of there, I had horrible reactions to my laptop...had to wrap it up in lots of plastic and it's in the car trunk as I still want to rescue info from the hard drive.

I stored my receipts for taxes in a plastic bag and put them in a file box that I bought down here, so they were well sealed. Came time to do my taxes, I sat outside by the pool on a sunny day, but handling the papers gave me the horrible depression response, as if somebody had died. I got through it, asking my bf to xerox most of it on the hotel machine and then clean off the entire xerox machine area that had been touched by my papers, with bronners and hot water on a washcloth to throw out. I didn't want to leave those toxic "poison" spores in the hotel!

Then I bagged the stuff back up into the file box. I won't have to deal with papers from my place again, at least I hope not.

Things that can be easily washed like nylon, polyester seem okay.

You can only really tell once you're out of a very moldy place. Then you may smell it on some items if it's ordinary mold, but if it's stachy I don't think that has much of a smell. But you'll know because you'll get emotionally or physically hijacked around it.

I didn't want to believe Lisa, but it happened to me and I know it's real. Where it stands on the list of first causes is different for each of us. Mercury poisoning in my teens, and then a bad strain of lyme, are my first causes. But if that made me reactive to molds and more vulnerable to stachy all I can say is, they do make CFS worse, and maybe even in some cases like Lisa's, they are causative.

 

Dear Slaya

My main goals in starting this thread have been to increase general awareness of the role of mold toxicity in CFS so that researchers/doctors will be pressured to look into it, and to urge people to consider whether the presence of severe mold problems in their homes or workplaces might be compromising their own health or that of their families.

Encouraging folks to try to use extreme mold avoidance to get really well from CFS is something I hesitate to do. This is a really hard path!

However, I’ve gotten a lot of questions about how extreme avoidance is pursued. 



This isn’t a secret. A document summarizing Erik’s approach is available to all those who want it, but the information is so complex that I hesitate to thrust it upon people. It’s sort of like saying it would be fun to take an airplane ride and having someone hand you a manual on how to BUILD the airplane as well as fly it.

So as a simple starting point, for those who are wondering what doing this might entail, here are some thoughts. I don’t have any scientific evidence that what I’m saying has validity though...it’s just based on my and others’ experiences.


1. Should I be concerned at all about regular mold? What about the “Mold Diet”?

Regular non-toxic mold can cause allergies. Some people suffer a good deal from those. I know almost nothing about mold allergies (I don’t have any myself), and so can’t help with that. I’m only interested in toxic mold, which is a few species that mostly grow on indoor building materials and in very specific circumstances outside.

The “Mold Diet” was created about 15 years ago, when the role of mold toxins in illness was not very well understood. It includes things like mushrooms, which have no toxicity at all. I don’t think many knowledgeable doctors use it these days.

Foods that contain mycotoxins (mostly aspergillus, a somewhat toxic mold) are mostly grains (e.g. corn, wheat, oats, rye) and nuts (e.g. peanuts, cashews). I used to have problems with those. However, inhaled mold toxins are (according to all the people I know who have gotten real improvements from addressing mold) much more important than ingested ones.

I tend to think that focusing on individual food sensitivities, whatever they are, would be more helpful than focusing on mold in foods in particular.


2. My house is moldy but I can’t move. What should I do?

I hate this question. It seems that there SHOULD be something that would be helpful, but I’ve never heard of anything.



If a house has a real mold problem, air purifiers will soon become the worst items in the house (except for vacuum cleaners and clothes dryers). So that doesn’t help much, even if filters are changed frequently.

Using dehumidifiers or otherwise killing the mold (e.g. with Thieves Oil) is totally counterproductive. Drying out mold causes it to release its spores all at once, increasing the amount in the air. The resulting big hit is one that CFSers may not recover from.

Attempting to fix the mold oneself (or getting people who are not trained in doing so) is EXTREMELY dangerous for CFSers. Please don’t do this! Please, please, please. Please!

Professional remediators and then reconstruction are expensive, and improvements likely will not be enough to help CFSers make much progress.

I can’t recommend leaving the mold, but none of those other options is good either.

I don’t know of any magic tricks to let CFSers tolerate mold better, other than all the general treatments that are discussed on this board.

Leaving the windows open and spending as much time outside the house as possible may be helpful.

Laundering bed linens frequently and hanging them to dry (preferably outside the house) might be a little helpful as well.


3. I am willing to move. If I don’t get rid of all my stuff, should I even bother moving? Why can’t I just wash it?

Whether “stuff” turns out to be a deal killer depends on the situation. Some people are more reactive than others. Some types of mold are much more damaging than others. The extent to which stuff has been exposed to mold also matters.

As Floyd said earlier in this thread, some CFSers may only need to pursue “moderate avoidance” in order to get clear. It’s possible that some are not affected by mold at all. That’s one reason we need research: to get a better sense of what’s going on.

If people are being affected by mold, any reduction in exposures is a good thing. Even if nothing dramatic seems to happen, it may result in longer term gains, give other treatments a better chance of working, and/or prevent a decline.

On the other hand, even a few really bad objects in a living space can be enough to keep some people scarily sick all by themselves.

So it’s hard to know upfront what the best thing is to do. Putting things aside, getting really clear (e.g. with the “Godforsaken wilderness sabbatical”), and then returning to the “stuff” to see if it’s a problem is the only way to know for sure how much it matters.

Maybe I can get someone who knows more about physics than I do to come here and explain why the toxins can’t be completely washed off hard objects. Metal and glass seem much less problematic than plastic though.

Washing does help a lot in terms of reducing the potency of the toxins. It also keeps them from cross-contaminating other stuff.

As Jen says, books and papers tend to be especially problematic since they absorb a lot of toxins and can’t be washed.


4. I am willing to leave behind much of what I own, but I can't leave everything, if only because of my son. There are beloved stuffed animals and toys I cannot make him give up. He's just still too young. I am fine with leaving behind all soft furniture, rugs, drapes, most clothes, and I can replace some tech items. But there are a few wooden pieces of furniture I'd like to be able to bring, some paintings of my grandmother's, expensive kitchenware, and some tech stuff I can't afford to replace. Is it pointless to leave some stuff behind if you're going to still drag contaminated items with you?



I think that it’s only a good thing to get any reduction in mold exposures. Moving from a moldy residence and bringing a minimum amount of possessions is a good start.

But if folks are going to do this, it’s nice to get as much benefit as possible. So this is what I suggest.

First, the most important thing is not to cross-contaminate the new residence. Washing everything after it leaves the old place and before it comes into the new place is crucial. If things can’t be washed, putting them in storage or getting rid of them is best.

I’d suggest moving into the new place without the old stuff for a while, just to get a sense of how things feel without the stuff. That way, it will be possible to know how much of an effect the stuff from the old place actually is having when it’s introduced.

Tech items can’t be washed, but they’re expensive. The only way to decide whether it’s worth keeping them is to get unmasked first and then see what kind of effect they’re having.

Having a “safe space” for sleeping in any residence is crucial. Keeping suspect stuff out of that area is really important. This includes newly purchased items as well as anything that’s transferred from the old place.

The worst items to bring (other than things that can't be washed) are clothing and bedding. Because these items are in close proximity to the individual for extended periods of time, they have a much greater effect than, say, a painting or a piece of kitchenware that is only approached for shorter periods of time.

5. My ex-husband used to live in this house, so probably his stuff is contaminated. If my son goes to visit him, won’t he bring the mold back with him and ruin all my efforts? Maybe I should just give up.....this sounds way too hard.

Yes, this is the kind of thing that I have to be thinking about all the time. It’s a different type of hell than having active CFS, but it still really sucks.

I don’t think that this particular problem is something that can’t be overcome though. Establishing specific protocols regarding what might be called “mold hygiene” (e.g. having the kid change clothes and take a shower as soon as he comes home, washing suspect stuff or leaving it in a box in the garage, etc.) can be done later on, if what’s being dragged back home starts to feel problematic.

6. I’m willing to move to another location of the U.S. What factors make some places better in terms of outside mold than others?

This is a hard question because there are so many variables. But after having traveled to a a couple of hundred different places during the past two years, here are a few observations.

A high percentage of the mold that’s in the outside air comes from the insides of bad buildings. Because cities have more buildings (some of which are going to be bad), they tend to be worse than less populated areas.

Good air circulation in a location can blow the outdoor toxic mold out of the area. Big cities that are surrounded by mountains often are especially bad. Being on the water (Chicago, New York) is helpful. Places that are higher in elevation compared to the surrounding area tend to be better.

Humidity only matters insofar as it makes buildings more likely to have mold growing. Some dry cities, like Phoenix, have terrible outside air in terms of mold. Carmel, CA, is damp but felt great to me.

Sunny skies tend to be really helpful in nullifying the effects of mold. UV radiation may degrade mold toxins, while clouds may prevent them from being dissipating into the environment.

Bad weather (rainstorms or snowstorms) usually means an increase in mold problems, since colonies release their dormant spores at this time with the goal of getting a new colony started in the water.

Different locations can vary in terms of which season is the worst. Fall tends to be bad in most places, because of all the rain. Winters tend to be especially cloudy, which hurts areas that benefit from sun in other seasons. Summers in really humid climates can cause the easy growth of all kinds of mold, and the heavy use of air conditioners releases a lot of spores from the ductwork.

Some places have more than their fair share of particularly damaging mold growing outside or in buildings. Examples of places that I have been include Texas, Lake Tahoe, the SF Bay Area, and Telluride, CO. As a rule of thumb, I suggest looking for places that have high rates of severe CFS (indicated by the presence of strong support groups, thriving FFC’s or historical epidemics) and then avoiding those locations at all costs.

Proximity to a super-good location can be really helpful for taking periodic “sabbaticals.” If I spend some time in a place that’s really pristine, I can tolerate even a relatively bad location much better the rest of the time.

For instance, one place that I might consider living is Flagstaff, AZ, which feels really good to me. It’s a moderate sized city surrounded by great expanses of wilderness on all sides, is pretty sunny year round, is at a high altitude compared to the surrounding area, and is very close to the very best place I’ve found in my travels (the Four Corners reservation area).


7. If Lake Tahoe is such a bad place, how could Erik have lived there for so long and stayed well?

Lake Tahoe has an unusual dynamic. In general, the air is terrifically great. However, the area has much more than its fair share of a particularly damaging mold that causes CFS sufferers (and to a lesser extent normal people) a great deal of suffering.

This super problematic mold is inside certain buildings in the area (e.g. Truckee High School). In addition, plumes of this particular mold waft around on air currents outside, coming from sewers and from trees that have been treated with fire retardants.

After Erik got really unmasked by going to the “Godforsaken desert” for a while, he was able to tell where these plumes were. He thus started decontaminating (taking a shower and changing clothes) every time he passed through them, and shifting locations frequently to get away from them. At one point he was taking up to 10 showers a day and often getting up in the middle of the night to move his camper to another place.

Most people (including me) would just go live somewhere less “challenging” under that circumstance. But he wanted to stay there.

During the past few years, the number of plumes of this really bad mold in the Lake Tahoe area (especially in Truckee) has gotten larger. Finally he got hit one too many times and moved to Reno. Reno has some plumes of this really bad stuff too (mostly coming from some sewer ponds in the area as well as from a few really bad buildings), but the situation there still is not as bad as the one in Truckee.


Best, Lisa

 

I would add that my experience, as someone with mold allergies as well, is that allergies are not trivial.

When tested for IgG antibodies on common household molds as well as candida yeast in 2002, by Marinkovich's office (he's no longer alive, but was the national expert on mold infections), I was off the charts with IgG antibodies--at the extreme end of even his patients.

That means my immune system was under huge stress, reacting to and fighting almost all molds. The mold in Atlanta and this hotel--now that the weather is so humid--causes me sinus inflammation and stuffiness, eustachian tube dysfunction, bladder pain and urgency and frequency, wheezing that is sometimes severe with an associated cough, and fatigue. As a result, poor sleep as well. Even if you were a totally healthy person you'd feel sick with all the above symptoms.

So though "allergy" sounds like something not that dangerous, it can compromise your entire health.

Then you add the molds that release immune and nervous system toxins--the worst being stachy by far, but also I believe aspergillus and others can be fairly toxic. If you live in a home with a mixture of those, with a good stachy growth *and* other molds, plus most likely bacterial species as well in the moist walls where they grow (and that's not well studied, but they release toxic vocs as well), you're going to get sick.

So basically, a house with mold is an unhealthy house for anybody with CFS. It's just that some molds are worse than others.

My bf has pretty significant pollen allergies. During the few weeks of spring and fall that he suffers severe pollen allergies he walks around completely exhausted, with dark circles under his eyes, and all kinds of pollen symptoms, in spite of taking allergy pills round the clock. If he had to live in a "pollen" house year round, he'd end up with completely compromised health.

Those were interesting examples above--but taking a little boy's stuffed animals if a house were really moldy, would seem really unwise to me. New stuffed animals will soon be loved as much as the old ones, but soft stuffed animals surely get very moldy, like all soft upholstered stuff. Any bit of health that can be gained, is more important.

 

Hi, Lisa and the group.

You mentioned that metal and glass seem to be more easily decontaminated of mold toxins, while plastics, many fabrics, paper and books seem to retain the toxins.

As a former materials scientist, I will just note that metals and glasses are inorganic substances and have relatively low porosity, while the materials that retain the toxins are organic (containing carbon chains or carbon-containing rings), and have a lot of porosity. Since mold toxins are also organic substances, it seems reasonable to suspect that they are more tightly bound in the latter materials. Also, metal and glass objects can be subjected to more extreme cleaning procedures without damaging them than can the organic substances. I'm reminded of Leviticus 13 in this regard.

Reading about the benefit of sunlight on breaking down mold toxins causes me to wonder whether organic materials could be decontaminated of mold toxins by means of ultraviolet light bulbs (used carefully, of course, to avoid injury to oneself from the ultraviolet). Note, however, that extended exposure of plastics to ultraviolet light causes oxidation, crazing and general breakdown of the material, which is why plastics don't do so well in the outdoors, unless made very opaque so that the ultraviolet light can't penetrate very far into the material. This is the strategy used for the black hose used in garden drip systems, for example, and automobile tires also benefit from this approach.

With regard to the terrible problem of what to do with a house that is contaminated with toxic molds, I'm afraid that we have not come very far from the regulations Moses recorded in Leviticus 14. Remediation was to be attempted, removing contaminated material. If that was unsuccessful, it was to be taken down, and all its materials taken to the dump.

Best regards,

Rich

 

By the way, just generally, cotton absorbs water (as a plant it has to) and wool resists water (even if cleaned and carded, it may still have lanolin on it). If you have a cotton futon, forget it (if you're in a moldy place). Wool fill pillows, wool blankets that can be sunned, a wool fill mattress, etc, are much more resistant. Yurts are traditionally made of wool and wick off water easily, cotton will mold in 24 hours (tents etc) if not heavily treated.

Even so, some of my cotton items were much more fixable than others. Maybe the weave is tighter on some--who knows.

 

There's just far, far too much on this thread for me to absorb and respond to now. Masses and masses of echoes of my own experience. And I have a splitting headache at the end of a long day. So I'll just react on this one for now...

Yes, indeed. It is so weird, my mind still boggles to try to theorise about it. I switched to 100% cotton long ago, but some cotton items were still a big problem from the word go, others became 'contaminated', and yet some have lasted for years without causing a problem. All I can go on is trial and error: once something 'goes bad' I bag it up and buy some more clothes. I've never managed to recover anything once it's 'gone bad', the closest I've got is that after long and extreme avoidance, some old clothes I'd given up on become bearable again - but not for long, and it's not a good idea.

Formaldehyde was one big theory for why cotton items can vary. I tested very sensitive to formaldehyde, and apparently it's on about 50% of cotton items worldwide (according to a study I read about several years ago). All kinds of stuff is coated with flame retardants of various kinds, presumably to guard against warehouse fires etc. That's my guess as to why you get so much variation with reactivity - sometimes I even buy a couple of packs of cheap shirts and one's OK and the other not.

So I'm assuming that, for me at least, the offending toxins come from a reaction between molds and other chemicals. But I really don't know, I'm not certain about anything in this. Except that I am certain that everything slayadragon is talking about on this thread is very closely related to whatever my problem is...

 

That's a useful theory. Perhaps the way cotton is treated, leads it to be more or less absorbent.

If you do some really good hot water washes in detergent, and then many hot water rinses with lemon juice, with sun-drying in between, in a good hot sun, you may rehabilitate some stuff.

 

What has worked for me to rid the mold is washing or wiping the items down with either bleach or STRONG white vinegar and then "baking them" in direct hot sunshine, which can take days, weeks or months, depending on how moldy they are. Or.... blasting the moldy items in an enclosed room with my Aranizer has also worked (for both mold and chemical smells--like new paint), but you have to be real careful with certain things (like plastics and electronics), because they will actually begin to disintegrate in the process. I have 2 aranizers and use them a lot whenever I bring anything stinky and new into my home.

 

Hello All !

I do not have CFS, but my wife Margie does (from mold) have CFS, but I am scientist with very extensive mold sampling experience in Colorado.

Margie's cottage at 9000' works well for her health, 8 months a year because adjacent forest is frozen and snow covered for that period so that spore counts are low such as 100 per cubic meter or even less.

The prevailing winds in the other 4 months (Late May to mid Sept) is SW. The problem is that 100's of miles in that (source) direction is forested with Aspergillus mold on forest debris on the ground. Therefore backgrounds of creep upwards all summer long especially in rainy periods.

This situation is (with minor variations to frozen times) normal for USA, Canada and Europe.

Right now in late May, the only low background areas on the planet are in or near Antarctica or downwind of huge desert areas or oceans.

My theory is that when Aspergillus spores per cubic meter exceed a person's threshold (i.e. 500 spores per cubic meter?) for daily toxic intake their CFS symptoms starts to increase even if they live their lives in a perfect home that does not emit mold spores.

So summer is a probable time for CFS symptom increases.

Thanks!
Rock.
Colorado, USA.

 

Hi Rampart,

I always enjoy seeing new people join the forum, and I especially appreciate your sharing your mold knowledge.

Advocate

 

A Colorado Cottage

Hi Rock,

This is really interesting.

Margie's cottage is about as high in Colorado as you can get, and it sounds like maybe she's not in "civilization."

From what you're saying it sounds like the "ambient" mold that she's most affected by at the cottage is Aspergillus growing outside. That makes sense, since Aspergillus spores easily rise up into the air (which is why it's possible to find them on air tests).

On the other hand, most outdoor Stachy seems to come from inside bad buildings, and thus is mostly present in populated areas.

Freezing outdoor temperatures and the presence of snow don't do anything to inhibit mold growing and being released in buildings. In some climates, indoor toxic mold problems actually get worse in the winter because (with decreased humidity) the colonies dry up and release their spores in a rush. And with more cloud cover in winter (leading to less dissipation of mold into the atmosphere and less UV degradation of the toxins), whatever mold is present may be more damaging.

Stachy spores (and I think also spore fragments) sink rapidly, which means that they're unlikely to make their way from a lower location to a higher one. So if the area right around Margie's cottage is good with regard to Stachy, she probably won't have it blown in from elsewhere.

So it does make some sense to me that Margie would do better in her cottage in the summer than in winter.

But I wonder if, like many of us, she feels worse in cities in winter than in summer. What have you found?

(All of this is totally putting aside the really bad mold that I've found growing outside in places like Telluride, Lake Tahoe and the SF Bay Area. Hopefully you don't have that stuff anywhere near you!)

A more practical question I have for you is how you went about selecting that cottage. Margie seems to be doing well in it, last I heard.

I recall your stating that you used a number of different evaluative methods, including a "Mold Dog," to find a place that was really good.

Might you be able to share with us what kinds of testing or evaluations you found most helpful?

Thanks much for your thoughts!

Best, Lisa

 

Wouldn't it be great if we could train mold dogs????? A novel idea.

 

I think they already have. I remember hearing something on a news show a few years ago about beagles that sniff out mold...

Does anybody know anything about this?

 

Mold Dogs

Here's the Mold Dogs site.

http://www.mold-dog.com/find_a_dog.htm

Hopefully Rock will be back to tell us about his and Margie's experiences with them.

Lisa

 

Hello All,

I have been asked how to find a mold free (or a near as possible) home.

From the Colorado perspective where I have concluded that 90% of homes have enough Penicillium/Aspergillus group to sustain symptoms, look for:

1. houses less than 5 years old
2. houses without gutters on their north sides
3. houses with no history of roof or plumbing leaks
4. houses with no subgrade wood materials
5. houses that have not had carpets shampooed in warm humid weather

Then air sample a round or two with Mircro5 or similar cassetes (25 liter samples), maybe 4-12 samples, send samples to EMSL then review report

Then if clean or nearly clean, hire Mark Peltz (Denver CO) and his mold dog to check out the house.

If that passes then strongly consider buying it or rent it.

Sorry to say, all of this is fairly complicated and fairly expensive. We have nearly rented or bought homes, done expensive sampling and have them fail. So it can be risky in that way.


Once you find a clean home work hard to make sure it stays that way no matter what it takes. For us that means being obsessive about keeping 100-200 inches / year snow off the decks and off the lower 3 feet of the roof.


Thanks!
Rock.

 

A New Post

I added a post related to this thread, called "The Straw that Broke the Camel's Back," here.

http://www.forums.aboutmecfs.org/sh...ogeneity-in-ME-CFS&p=86049&posted=1#post86049

Comments would be appreciated.

Thanks, Lisa

 

Literature on Toxic Mold and Oxidative Stress

I put a post summarizing the research literature related to the topic of oxidative stress and toxic mold on this thread.

http://www.forums.aboutmecfs.org/showthread.php?5295-Toxic-Mold-Research-Articles&p=86900#post86900