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
