Mold, Dr. Cheney and ME/CFS

[slayadragon]

Dear Slaya

Mold

I have to admit that I'm not that familiar with the topic of toxic mould and at first sight it seems a little 'out there' to me. I've lived in old mouldy Edwardian terrace houses - while entirely healthy - and have been ill while living in three dry modern houses. I have noticed though that humid days make my problems much worse. I'm now living in a warmer, drier climate but in an old mouldy farmhouse with no change in symptoms. I always feel better outside in the fresh air though - so perhaps there is something in it. How would I know?

This question is from another thread, but I thought I’d post my response here for compactness.


Toxic mold has a number of weird characteristics that tend to cause people to inappropriately rule it out as a potential factor in CFS. Here is a summary of some of those.


1. Stachybotrys vs. Other Molds

Stachybotrys, which appears to be the most problematic mold in CFS, rarely grows in places where it can be seen or smelled. Thus, many buildings have severe Stachy problems without any evidence of its being there.

This mold usually grows inside walls, behind shower tile or (as in my house) behind other solid surfaces such as paneling. On those occasions when it can be seen, it usually looks like smears of dirt on the wall rather than mold.

Only if the walls (or whatever) are opened up does it look like mold.

However:

PLEASE DON’T OPEN UP THE WALLS TO LOOK AT THE MOLD! THIS IS VERY DANGEROUS!!!!

(CFS sufferers should never go looking for mold in their homes or try to remediate it themselves. They should be nowhere around when any remediations are done, and should hire a competent professional to do the job. I have seen CFSers experience permanent declines as a result of not following these recommendations, and Erik has seen many people get sick or die as a result of doing this type of do-it-yourself work. Be safe!!!)

Stachy doesn’t come up on most tests used by remediators either, as described in one of my posts earlier on this thread. So not being able to see mold, smell it, or find it on conventional tests gives no assurance whatsoever that it’s not there.


(Are we having fun yet?)

Stachy can grow synergistically with certain other molds. This is misleading as well. People get various tests done and find out, to their relief, that it’s “ONLY” X mold. Meanwhile, the hidden Stachy is ignored.

On the other hand, buildings can be quite moldy and not have any Stachy or other particularly toxic molds growing. This especially tends to be the case in damp climates.

Most non-toxic molds need a good bit of moisture in the air to grow. When moisture is present, these molds can just spring up “spontaneously” as a result of spores being blown in from outside and the water in the air.

Stachy grows under a very different set of circumstances. 

First, Stachy usually needs a water sitting for an extended period of time (24 hours or more) to get started. Thus, it is associated with “water events” such as leaks or floods. In some cases, the condensation in ductwork or in between walls (e.g. at the “condensation interface”) is enough.

If Stachy gets some water, it can grow even if the general humidity is low. 60% (which is the “comfort level” in climate controlled buildings) is plenty high enough. (More benign molds usually require more humidity to grow freely.)

Once a colony of Stachy has been established, it does not help to dry it out or kill it (e.g. with Thieves Oil). Dead colonies of Stachy are just as problematic as live ones. All that happens when a colony is dried out is that it releases a whole lot more dormant spores into the environment. (See abstract below.)

Stachy creates its poisons in order to coat all the surfaces of the environment. This is designed to prevent competitive molds from growing, thus allowing Stachy to grow more freely. (The poisoning that it does to people and animals apparently is just a side effect.)

A dwelling that has previously had a big Stachy problem thus will have poison spread throughout. This poison may keep occupants sick even if all the colonies have been properly removed. It also will make it more likely that Stachy (rather than competitive molds) will grow if conditions again become conducive.

Remediated buildings also will have lots of Stachy spores left, just waiting to spring up into live mold if they get some water.

Insofar as a building is remediated correctly and maintained carefully, it may be safe for people who are not already sick. However, it’s my belief that the amounts of mold toxins required to keep CFSers sick are often so low that recovery even in a house that’s been remediated may be extremely difficult.

Just because a house is moldy does not mean that it has Stachy in it. In fact, the presence of competitive molds can keep Stachy at bay. (This is the main reason why Stachy tends not to be found outdoors except under very specific circumstances.)

I don’t think that this means that it’s a good idea to let “benign” molds grow wild! Mold is unsightly, smells bad, damages property/possessions and causes allergies.

However, especially in a humid climate, the presence of obvious mold does not mean that Stachy or other particularly problematic species are present.

And just because it seems that there’s no mold at all is no assurance that that a horrific Stachy problem is not present.


2. New Buildings vs. Old Buildings

As Rock pointed out above, very new buildings MAY be less likely to have mold growth than ones that are a bit older. However, many times they go bad really fast.

Newer buildings tend to be built with characteristics (e.g. drywall, HVAC systems, lots of insulation, cheap construction) that lend themselves to mold growth.

In addition, a lot of building materials are stored in moldy warehouses or otherwise put into place “pre-molded.” The mold toxins on these materials have effects on those of us who are being especially scrupulous in pursuing avoidance. In addition, the spores present are sitting there waiting for a water event so that they can spring into live mold.

It’s hard to predict what buildings are going to be bad just from looking at them. Erik insists, “It is where it is.”



I personally get nervous about entering two specific kinds of buildings: ones with modern construction that look like they’ve been poorly maintained (especially if they have flat roofs), and ones that are sealed off with centralized duct systems.

I’ve never been in a big fancy hotel that felt good to me, for instance. Shopping malls and big office towers usually are problematic.

Buildings that fall into both of these categories (e.g. many schools and government buildings) tend to be the very worst, in my experience.

It’s impossible to know whether an “old mouldy Edwardian terrace house,” a “dry modern house” or an “old mouldy farmhouse” would be especially good or especially bad with regard to toxic mold.


“It is where it is.”


3. Progressive Effects

Another thing to keep in mind about toxic mold is that we’re not talking about an allergy. We’re talking about being poisoned.


If someone had a big exposure to nerve gas, we wouldn’t expect them to recover the moment they got away from it. And the idea that they might be especially susceptible if they got hit with the nerve gas again wouldn’t seem entirely unreasonable.


The same thing applies to toxic mold.

For at least some people, effects are cumulative. Just because you live in a building and aren’t being made deathly ill by it doesn’t mean that it’s not priming you for future serious illness.

Our belief is that once people get CFS, they tend to become much more affected by even small amounts of toxic mold. This means that even if a building isn’t that bad with regard to toxic mold, their “extreme reactions” to it may be keeping them much sicker than they would be if they were in a really good building.

These reactions may be so extreme that even moving to a really good building won’t make any difference, if people bring along all their contaminated stuff.

A main reason that people rule out mold as a factor in their illness is because “moving didn’t help.”

Those of us who have substantially improved or gotten well from mold avoidance wouldn’t have been helped much just by moving either.

Even moving to a really good building with only good stuff doesn’t result in a magic recovery most of the time. Toxic mold in the outside air can be an issue. Also, it can take the system a long time to address all the downstream effects and repair itself.


4. “Humid Days”

One issue that is really related to toxic mold “flares” is barometric pressure changes.

When storms approach, toxic mold colonies release their spores in the hopes of getting water to start a colony. This means that those affected by toxic mold tend to feel worse during those times.

In some cases, a severe storm will wash those released spores out of the air. Usually the outside air (and certainly the inside air) does not recover until the weather improves though.

Even in climates with little rain, spores are released at times of barometric pressure drops. Purchasing a device to measure barometric pressure (available at places like Wal-Mart) or just looking at the extent to which skies are sunny vs. cloudy can allow CFSers to get a sense of whether this phenomenon might be going on for them.


5. “Fresh Air”

Feeling better in fresh air is generally a good hint that toxic mold (or at least some substance present inside buildings) is a problem.

However, in some places, the outside air is severely affected by toxic mold. Pollution can affect outdoor air quality as well.

Therefore, not feeling better outside (especially on days that are not sunny) is not necessarily a good indication that toxic mold is not an issue.


Obviously, all of this makes the questions of whether CFSers are getting toxic mold exposures and whether they are affected by toxic mold really hard to answer.

That’s why it took me 12+ years to realize that mold was an issue for me.

I wish I’d understood that the possibility existed upfront. I’d have gotten to a higher level of wellness much more easily and quickly, and not wasted all those years doing nothing but lying in bed staring at the ceiling.

The only way to figure it out is to unmask in the way that Erik (the “Godforsaken Wilderness” sabbatical) and Dr. Myhill (“I’m afraid you’ll have to go on holiday”) recommend doing.

Best, Lisa

*

Fog Nielsen K. Mycotoxin production by indoor molds. Fungal Genet Biol. 2003 Jul;39(2):103-17. PMID: 12781669

"The worst-case scenario for homeowners is produced by consecutive episodes of water damage that promote fungal growth and mycotoxin synthesis, followed by drier conditions that facilitate the liberation of spores and hyphal fragments."

 

[slayadragon]

Hi, Slayadragon.

Several of the abstracts you posted describe evidence that mold toxins produce oxidative stress and glutathione depletion in their hosts.

As you know, the GD--MCB hypothesis proposes that CFS begins (in a person who has inherited an appropriate set of polymorphisms) when glutathione is pushed down far enough to remove protection from vitamin B12 and thereby bring on a partial block in the methylation cycle, which then forms a chronic vicious circle with the glutathione depletion, thus producing CFS.

Based on the above, it seems that a link (or "the" link) between mold toxins and CFS in genetically susceptible people is the promotion of oxidative stress by the toxins, bringing down the glutathione levels.

Combining this with Dr. Shoemaker's work on the HLA genotypes, it appears that a person who has inherited both a set of susceptible HLA genotypes and the genetic predisposition toward developing a partial methylation cycle block when glutathione goes low enough is a person who is susceptible to developing both mold illness and CFS if exposed to an appropriate level of mold toxin.

This link is similar to the one I suggested to exist between Lyme disease and CFS in a 2009 poster paper (which can be found at www.cfsresearch.org). In Lyme disease, it has been found that the Borrelia burgdorferi bacteria also cause a depletion of glutathione in their hosts.

According to the GD-MCB hypothesis, anything that can take glutathione down low enough in a person who is genetically susceptible to developing the partial methylation cycle block is a potential cause for CFS in that person. This includes a wide variety of stressors, some of them toxins or pathogens, but also physical stressors such as trauma or extreme overexercise, or psychological/emotional stressors. In studying the histories of many PWCs over the past several years, I have found that in many cases the person was subject to a combination of stressors that were present simultaneously, some of them long-term.

Best regards,

Rich

Hi Rich,

I was really happy to see you respond to those abstracts about oxidative stress! Thanks much for your comments.

Following are some comments/questions of my own.


1. Here you list a variety of things that can place a demand on glutathione and cause oxidative stress.

> This includes a wide variety of stressors, some of them toxins or pathogens, but also physical stressors such as trauma or extreme overexercise, or psychological/emotional stressors. In studying the histories of many PWCs over the past several years, I have found that in many cases the person was subject to a combination of stressors that were present simultaneously, some of them long-term.

Do you have any sense of the relative extent to which each of these can contribute to this phenomenon? Or do you have any thoughts about how we might be able to figure out which of these are mildly important vs. extremely important?

I believe that I currently have a good understanding of what “oxidative stress” feels like for me. This was part of why I did the phosphine experiment: to know for sure what it felt like to be poisoned by a chemical that kills by oxidative stress, so that I could know what other substances were affecting me in the same way.

(This sounds exceedingly stupid, but I was really careful to get just a little bit of exposure. And in the end, the kind of poisoned feeling that I got from the phosphine was FAR less problematic, qualitatively and quantitatively, than what happens when I get exposed to the mold that’s present in relatively large amounts in Lake Tahoe. That toxin is in a horrific category all by itself. The phosphine just felt like a regular mold hit of the sort I get every day, if I’m not being super careful.)

Exposures to even tiny amounts of toxic mold (especially when I was at my most reactive) give me strong feelings of oxidative stress. Lyme die-off does that. The Valcyte and Famvir (for the herpes viruses) did that.

Other than the phosphine, I never found any toxic chemicals that have given me that effect. (Plenty of toxins have bothered me, but none of them in that way.)

I have on plenty of occasions during the past year experienced lots of emotional/psychological stress. I’ve also done a lot of exercise. If I already was experiencing the “oxidative stress response,” those additional factors seemed to exacerbate it a bit. If my system was not already in “oxidative stress response,” those additional factors did not create it.

I thus would like to posit that the key factors that cause the oxidative stress response in CFS are toxic mold and certain specific pathogens. Other “stressors” seem to me to have the potential to exacerbate the situation but not to cause it.

Do you have any studies discussing the ability of these various stressors to create oxidative stress? Maybe looking at such studies would make the extent to which they’re important more clear from an objective standpoint.

Have you written anything on how you think the various viruses present in CFS (e.g. XMRV, HHV6a, etc.) play into your hypothesis? 



2. I agree that oxidative stress is an important link between CFS and toxic mold.

>Based on the above, it seems that a link (or "the" link) between mold toxins and CFS in genetically susceptible people is the promotion of oxidative stress by the toxins, bringing down the glutathione levels.

In addition, there’s a good bit of literature detailing the ability of various toxic molds (especially trichothecenes) to compromise the immune system directly.

This would combine with the indirect effects (through the creation of oxidative stress) that you detail, making people even more subject to colonization by various pathogens.

I am going to post some abstracts related to the effects of mold on the immune system soon.

A number of doctors/researchers have focused their attention on the importance of the gut in CFS. Thus, the particular ability of mold toxins to affect the intestinal system (e.g. the abstracts I recently posted) seems of relevance.

This is particularly interesting to me since it seems connected with the idea that mold toxins from Stachybotrys tend to be more damaging (especially with regards to creating a whole lot of oxidative stress even when present in small quantities) when bacteria toxins are also present.

In some cases, the bacteria (e.g. Streptomyces Californicus) are ones growing alongside the Stachy in sick buildings. However, LPS (an endotoxin made by bacteria) also has that effect.

Insofar as CFS patients’ guts are colonized with LPS-producing bacteria, any mold exposures they get will be more damaging. And insofar as this leads to even more gut bugs, a downward spiral will result.

Doctors such as Kenny de Meirleir and Paul Cheney have focused much of their attention on addressing gut problems, which is consistent with addressing this phenomenon. However, if indeed mold exposures are causing the gut problems, it seems to make sense that reducing exposures to the mold would be a particularly good place to start when working towards improving the gut.

Another particularly relevant effect of toxic mold is its ability to create perforations in the blood-brain barrier. Many CFSers have at least moderate MCS, and it seems reasonable to think the perforations are at least partially responsible. It also seems to me that these holes may allow various other toxins (especially mercury and Lyme) to move easily into the brain, thus becoming especially damaging and (perhaps) with the particularly neurological effects observed in CFS.

I need to read the literature more thoroughly, but it seems to me that it’s suggesting that some of the inflammation from mold toxins is mediated by oxidative stress and some occurs as a direct result. 

Would you be willing to give me a brief summary of what you see as the basic difference between your theory and Marty Pall’s? Or direct me to a place where I can read about it?


3. Following, you discuss how CFS can turn into a vicious cycle:

>One of the most important sulfur-containing substances in the body is glutathione, so now you can see how this is starting to look like a dog chasing its tail! The thing that causes chronic fatigue syndrome to be chronic, and keeps people ill for years and years, is this interaction between glutathione, vitamin B12, and the methylation cycle. When glutathione goes too low, the effect on vitamin B12 slows down the methylation cycle too much. The sulfur metabolites are then dumped into the transsulfuration pathway (which is connected to the methylation cycle) too much, are oxidized to form cystine, pass through hydrogen sulfide, and are eventually converted to thiosulfate and sulfate and are excreted in the urine. This lowers the production of glutathione, which requires cysteine rather than cystine, and now there is a vicious circle mechanism that preserves this malfunction and keeps you sick.


Marty Pall also posits a vicious cycle that goes on forever and ever without any particular outside stimuli. Dr. Shoemaker seems to be implying that this can happen too, with his comments about how how C3a goes up and stays up for no apparent reason in CFS patients.

Perhaps I have an overidealized perception of how the body works, but this does not sound right to me. Any gene that would make us so fragile that a single knock-out blow would keep an unending vicious circle going forever without any further stimuli seems to me that it would have been weeded out of the population long ago.

I thus have to believe that there’s something that’s contributing to the oxidative stress/inflammation that’s keeping the cycle going.

One possibility is that it’s one of the pathogens (e.g. viruses or Lyme). But my own experience in being able to get the oxidative stress to mostly or entirely go away just as a result of extreme mold avoidance makes me think that for at least some people, it’s tiny bits of mold exposures that are doing it.

The idea that tiny bits of mold could be having such a tremendous effect seems at first a little bizarre. However, ag studies suggest that phosphine (which seems similar to mold in terms of all of its effects) is especially toxic in very small doses administered over long periods of time. Insofar as CFSers already have experienced that condition as a result of years or decades of exposures in their homes, each additional bit may be bringing them closer to the “deadly” dose and thus having an unexpectedly severe effect.

This especially seems to be the case when certain viruses are added or reactivated. Perhaps Gerwyn will explain to us soon how that might be working.


4. You periodically have distinguished in your work between the epidemic/cluster cases and the isolated cases.

> To get an isolated case of CFS (I'm not talking here about the epidemics or clusters), you have to have inherited some genetic variations from your parents.... I suspect that the clusters or epidemic occurrences of CFS (such as at Incline Village in the mid-80s) were caused by particularly virulent infectious agents, such as powerful viruses, and the genetic factor is less important in these cases.


I think that you are differentiating here because in the epidemics, a high percentage of the population (e.g. all the teachers who used the teachers’ lounge at Truckee High School, half the girls’ basketball team) came down with the illness. This suggests that everyone was susceptible, not just a few people with the bad genes.

I agree.


However, as you know, I am positing that the epidemic cases presented with such prevalence and such severity not because of a particularly virulent infectious agent but because of the presence of a particularly problematic toxin.

Clearly, no one should take my word on the potency of the mold that I found in quantity in certain specific places in Lake Tahoe and in other places where CFS sufferers experience particularly vicious forms of the disease. Nor should they take the word of a bunch of us on this, without any systematic scientific research.

However, it seems to me that these observations should at least be a starting point for getting such research to be done.

Unfortunately, Erik thus far has been unsuccessful in getting anyone to take a look at this mold. I think it’s time to change that.

Let’s say that I have a sample of a particular mold that I believe to be unusually damaging. How would I go about analyzing it? Is this what a mass spectrometer is for? Is there anyone you know who might be appropriate to help to do this kind of work?



Maybe I could find a way to get such work funded, if I knew what was involved.

As always, thanks much for your help.

Best, Lisa

 

[slayadragon]

Trichothecenes and Intestinal Cells

I put on this thread (currently post #2) are some abstracts related to how trichothecenes can affect intestinal cells.

http://www.forums.aboutmecfs.org/showthread.php?5295-Toxic-Mold-Research-Articles&p=87879#post87879

 

[slayadragon]

Interactions Between Bacteria and Toxic Molds

Per my comments above to Rich, I posted some abstracts about the interactions between trichothecenes and various bacteria on the following thread (Posts #3 and 4):

http://www.forums.aboutmecfs.org/showthread.php?5295-Toxic-Mold-Research-Articles&p=88231#post88231

 

[slayadragon]

Mold Toxin, Pig Liver and Echo Terrain Mapping

I put some comments related to Dr. Cheney's Echo Terrain Mapping in a post called "Mold Toxin and Pig Liver" (currently #50) on this thread:

http://www.forums.aboutmecfs.org/sh...m-Dominance-and-Heterogeneity-in-ME-CFS/page5

 

[slayadragon]

The Virus and The Mold

The following is a teaser for an upcoming documentary on CFS, called "What About ME?"

http://www.whataboutme.biz/

In the video (U.S. version), Erik Johnson talks at length about how the "Tahoe Flu" (or "Yuppie Flu") moved through the Lake Tahoe area in 1984-1986, causing a substantial number of people to get severely and permanently ill with the "Mystery illness" (later named CFS).

A few people have expressed puzzlement to me about this. It seems that Erik's spent so much time trying to draw attention to the role of mold in this disease that his also having been affected by the "flu" (and whatever pathogen caused it) has been overlooked.

The fact that a pathogen apparently caused/triggered the illness does not mean that other factors were not involved.

Exactly how various toxins (including the mold) and pathogens (such as XMRV, Lyme, HHV6a, etc.) interact with one another in this disease is one of the most interesting questions related to the CFS phenomenon. An answer will bring us much closer to understanding the disease as a whole.

As food for thought while we're waiting, here are some comments of Erik's about what he saw in terms of the mold and the "flu."

Additional comments of Erik's on topics such as mold/CFS connection, the history of the Incline Village epidemic, and extreme mold avoidance are available in a compilation. For a copy, please let me know.

Best, Lisa (slayadragon at ya-hoo)

*

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)

*

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)

*

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 equalled 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)

*

One can look in the local Tahoe newspapers from 1985 and see that Dr. Cheney and Dr. Peterson never had a narrow view of the "mystery malady" and implicated a subclinical problem with a "triggering agent" right from the start.

-Erik Johnson (2010)

*

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)

 

[slayadragon]

The Role of Toxic Mold in Chronic Fatigue Syndrome: Glossary

Someone just asked me for the definition of "spot plume."

So here, from Erik's book, is a glossary of terms related to this topic.

Best, Lisa

*

Glossary

Above Tolerance. An environment (particularly a home or work environment) that is host to a larger amount of mycotoxins than a particular individual can bear without becoming ill.

ACTH. Adrenocorticotropic hormone, which stimulates release of cortisol; serves as a masking device allowing individuals being affected by mold to function without observable symptoms.

Adsorbed. The process by which mycotoxins (or other gases or liquids) bond permanently to the surface of a solid item.

Agitated Exhaustion. A state experienced by CFS sufferers as a result of their being unable to sleep deeply or restfully; may be caused by the presence of mold toxins.

Air Test. Environmental test looking for the presence of mold spores in the air; not helpful in gauging the presence of Stachybotrys or determining effects of an environment on severe reactors.

Ambiently Bad. A place that causes a mold reactor to suffer a decline in mood.

Anaphylaxis (or Anaphylactic Response). A complement spike accompanied by a variety of possibly severe symptoms that can occur in individuals that are hyperreactive to certain substances (such as peanuts, latex, strawberries or mycotoxins).

Aspergillosis. A disease characterized by the colonization in the human body of the mold aspergillus; generally present only in individuals with compromised immune systems.

Aspergillus. A toxic mold that is easily airborne, contaminates food and sometimes colonizes the human body.

Avoidance. Staying away from areas or objects contaminated with toxic mold spores, spore fragments or mycotoxins.

Bad Building. A building with a problematic level of mold toxicity.

Badness. An area or object that has a negative effect on a mold responder.

Bad Zone. An area problematic for mold responders.

Balance the Books. Spend time in a low-mold area in order to mitigate the effects of previous mold exposures.

Benign Mold. Fungi that do not manufacture mycotoxins.

Beta Glucans. Pre-sensitizer compounds made by toxic molds.

Biotoxin. Toxin made by certain organisms, including certain types of mold, certain strains of Lyme bacteria, brown recluse spiders, certain types of algae, certain dinoflagellates and certain other bacteria.

Biowarfare Protocols. Methods used to combat the effects of biological, chemical and radiological weapons, using the principles of detect, evacuate, avoid and decontaminate.

Black Mold. Stachybotrys.

Blood-Brain Barrier (BBB). A boundary surrounding the central nervous system that prevents the penetration of certain substances such as commonly used chemicals; satratoxins can increase its permeability.

Blue-Sky Day. A clear sunny day with a low level of outdoor toxic mold.

Brain Fog. Decreased cognitive abilities experienced by Chronic Fatigue Syndrome and mycotoxin illness sufferers.

Breaking the Response. Spending an extended amount of time in an environment with a low level of toxic mold, in order to bring down a complement spike.

C3a. A form of complement (anaphylatoxin) that tends to be elevated in patients with biotoxin illnesses.

C4a. A form of complement (anaphylatoxin) that tends to be very highly elevated in patients with mold toxicity and certain other biotoxin illnesses.

Carrying the Response. Having hair or clothing contaminated by previous exposures to toxic mold spores or spore fragments.

Chaetomium Globosum. A toxic mold that is particularly difficult to remediate.

Cholestyramine (CSM). A medication that was originally used to lower cholesterol and that is effective at removing mycotoxins and other biotoxins from the body.

Chronic Fatigue Syndrome (CFS). The disease identified in the Incline Village patient cohort in the mid-1980s, characterized by specific and persistent immune system, hormonal, neurological and other systemic abnormalities.

Ciguatera. A biotoxin illness obtained as a result of eating fish that are predators of dinoflagellates.

Clear. A system that is free enough of toxic mold for complement to decrease to normal levels, or an area that is low enough in toxic mold for this to occur in a particular individual.

Colony. A growth of mold.

Compensation. Spending time in areas low in toxic mold in order to be able to tolerate greater toxic mold exposure at other times.

Complement. Proteins in the blood that identify and remove molecules identified as foreign; these molecules can include mycotoxins, allergens, and pathogens.

Complement Spike. An sudden increase in complement caused by an exposure to toxic mold or other substance.

Contamination. The exposure of an item to toxic mold spores or spore fragments, causing it to carry mycotoxins on it.

Crash. Extended abnormal physical exhaustion after a period of activity exhibited in CFS sufferers.

Cross Contamination. The process by which toxic mold spores or spore fragments dislodge themselves from one item and attach themselves to another item.

Cyclosporins. Immune suppressor compounds made by toxic molds.

Cytokine. Proteins that control inflammation; overproduction of pro-inflammatory cytokines and/or lack of anti-inflammatory cytokines are characteristic of mycotoxin illness.

Damp Down. The decrease in complement to a normal level as a result of decreases in toxic mold exposures.

Decontaminate (Decon). Wash ones hair, take a shower and change clothes after being exposed to toxic mold spores or spore fragments.

Delayed Response. Negative reactions experienced hours or days after mycotoxin exposures occur.

Denature. The process by which items contaminated with mycotoxins become more tolerable to mold responders; occurs as a function of time or very high heat (500 degrees or higher); exposure to sunlight, high altitudes or alcohol also may contribute.

Dent Test. Observing the extent to which skin indentations as a result of pressure occur and persist as a way in which to measure the extent to which mycotoxins have created hypoperfusion or edema, and thus affected the system as a whole.

Depression Response (also Anger/Anxiety/Panic/Suicide Response). A negative change in mood resulting from exposure to mycotoxins.

Desert. A wilderness area with a low level of toxic mold.

Detoxification. The process by which toxic chemicals of any sort are expelled from the body.

Die Down. The process by which items contaminated by toxic mold lose their ability to negatively affect mold responders.

Disinterest Response. Common unwillingness of medical professionals to attend to or examine the issue of mold illness and its connection to CFS.

Down-regulate. A decrease in complement to a normal level, accomplished as a result of decreased exposure to toxic mold or other problematic substances.

Dose Related. An effect determined by the total amount of toxic mold to which a person has been exposed.

Dr. B. Dr. Keith Berndtson, a medical doctor with an interest in mycotoxins.

Dr. Mary. Dr. Mary Beth Short-Ray (a.k.a. Dr. Mary Short or Dr. S-R), a doctor of osteopathic medicine with an interest in mycotoxins.

Dr. S. Dr. Ritchie Shoemaker, a medical doctor with an interest in mycotoxins and other biotoxins.

Duration Related. An effect determined by the length of time that a person has been exposed to toxic mold.

Effect. The changes that occur in the systems of sufferers of CFS or mold illness as a result of environmental exposures to toxic mold and/or related substances.

EMFs. Electromagnetic fields such as those emitted by satellites, cellular phones, power lines, CD players and computers; have the potential to cause molds to release more toxins or more potent toxins.

EMF Sensitivity. Being negatively affected by electromagnetic fields such as those emitted by satellites, cellular phones, power lines, CD players and computers.

ERMI. Environmental test looking at the presence of genetic material from molds.

Erythropoietin (Epo). An anti-cytokine protein that can improve VEGF problems in CFS and mycotoxin illness sufferers; may be increased by temporarily spending time at high altitudes or through administration of the drug Procrit.

Exposure. Coming into contact with toxic mold spores, spore fragments or poisons.

Extreme Avoidance. A technique using avoidance and decontamination techniques in order to limit exposure to even very small amounts of mycotoxins.

Extreme Responder (or Extreme Reactor). An individual who experiences negative symptoms as a result of exposure to very small amounts of mycotoxins.

Fusarium. A common indoor and outdoor mold that often can be toxic.

Getting Clear. Going to a low-mold area in order to reduce the symptoms of previous mycotoxin exposures.

Gluten Intolerance. Negative reactions to consuming protein found in wheat, barley, rye and oats; may dissipate when mycotoxin reactivity is successfully addressed through avoidance or other means.

Godforsaken Desert (or Godforsaken Wilderness). Any area far from civilization and with a very low level of toxic mold.

Good Day/Bad Day Phenomenon. A common tendency of CFS sufferers to feel better on some days than others, related in at least some cases to the total amount of toxic mold in the air.

Good Laundromat. A laundromat with a toxic mold level low enough to permit clothing or bedding put through the dryer to be safe for extreme mold responders.

HEPA Filter. An air filter that removes mold spores from the air, but that does not provide protection from small spore fragments or the mycotoxins manufactured by toxic mold.

High Spore Count Day. A day with a high level of outdoor toxic mold.

Hit. Contact with mycotoxin.

Hitting the Wall. Reaching a level of toxic mold exposure that causes the individual to suffer debilitating effects lasting for an extended length of time, and that cannot be quickly reversed by subsequent exposure to pristine areas.

HLA DR. A genetic test that can be used to assess an individuals ability to effectively eliminate from the body mycotoxins, Lyme toxins and other biotoxins, as well as tendency toward low MSH production.

Herxheimer. An exacerbation of symptoms due to increased cytokine effects in Lyme patients taking antibiotics or cholestyramine.

House in the Desert. A home in any secluded area with a very low outdoor mold level.

Hyperreactivity. Being affected by very small amounts of toxic mold to a much more dramatic extent than the average person, due to complement activation.

Hypoperfusion. Decreased blood flow through an organ (including the skin), a problem common amongst CFS and mycotoxin poisoning sufferers and caused by low levels of VEGF.

Hypothalamus. The master gland of the endocrine system; produces MSH and other hormones.

Intensification Reaction (or Intensification Response). Phenomenon in which an individuals reactivity to toxic mold increases dramatically after spending time in a place with a relatively low level of toxic mold.

Intracranial Pressure. Pressure in the brain and spinal cord; tends to be elevated in CFS patients, possibly as a result of inflammation from exposures to toxic mold.

Ionophore Toxins. A lipid-soluble molecule (including those made by toxic mold) that transports materials across cell membranes and thus distributes them evenly throughout the body.

Irritable Bowel Syndrome. Condition consisting of abdominal pain and alternating constipation/diarrhea; may resolve when mycotoxin poisoning is successfully addressed.

It. A substance prompting specific symptoms in a mold responder; may be comprised of Stachybotrys, other toxic molds, and/or a combination of toxic molds and other chemicals.

Leptin. Cytokine made by fat cells that regulates body mass; high leptin and low MSH levels tend to be present in biotoxin patients and lead to obesity.

Locations Effect. The tendency of CFS sufferers to feel better in some places than others; may be related to outdoor toxic mold levels.

Low MSH Genotype. HLA DR category that indicates an individual who tends to have a low amount of MSH, especially when suffering from biotoxin illness.

Low Spore Count Day. A day with a low level of outdoor toxic mold.

Lyme Disease. An acute or chronic illness caused by several species of bacteria belonging to the genus Borrelia and characterized by a wide variety of physical, cognitive and emotional symptoms (some similar to those attributable to mycotoxins).

Lyme Susceptible Genotype. HLA DR category that indicates an individual who is unable to easily detoxify Lyme toxins from the system.

Lymie. Individual suffering from Lyme disease, especially chronic Lyme disease.

Macrophage. A type of white blood cell that collects cell debris and serves as a first-line defense against the infiltration of toxins and pathogens.

Masking. Compensations made by the system in order to continue to function despite toxic exposures; can prevent the recognition that an overload is occurring.

MCS. Multiple Chemical Sensitivity, a condition in which sufferers respond negatively to a wide variety of chemicals that do not affect most people; may abate with successful avoidance of toxic mold.

Melatonin. Hormone regulating restorative restful sleep.

MELTDOWN Syndrome. Malingering Exaggerating Lying Troubled Over Worked Neurotic Syndrome. Joking name for CFS, based on various causes for the disease postulated by uninformed professionals and laymen.

Microbial Volatile Organic Compounds (MVOCs). Organic compounds that evaporate easily; these account for the mustiness of molds but not their most toxic characteristics.

Mildew. Superficial growth of fungi on organic surfaces.

MMP9. A pro-inflammatory cytokine that tends to be elevated in mycotoxin illness.

Mobile Environmental Containment Unit (MECU). Recreational vehicle or other vehicle that can be used for showering after mold contamination and for flexibility in being able to travel to areas that are low in toxic mold at a particular time.

Mold. Any of various fungi that often cause disintegration of organic matter; may be used as shorthand for toxic mold or mycotoxins.

Mold Advocate. Individual who attempts to make the dangers of toxic mold more widely known.

Mold Allergy. The bodys reaction to the misidentification of benign mold as problematic; characterized by symptoms such as sneezing, watery eyes, stuffy nose, itching or asthma.

Mold Avoider. An individual who makes an effort to obtain wellness by avoiding toxic mold.

Mold Castle. A home (especially an expensive home) characterized by a high level of toxic mold growth.

Mold Facies. A red rash on the face caused by exposure to toxic mold.

Moldie. An individual who suffers from negative effects of toxic mold, especially from very small amounts of toxic mold.

Moldie Mobile. An MECU.

Mold Responder. An individual who suffers from negative effects of toxic mold.

Mold Sabbatical. A finite period of time spent in a wilderness area very low in toxic mold, in order to gauge mold reactivity, increase mold sensitivity and/or promote healing.

Mold Susceptible Genotype. HLA DR category that indicates an individual who is unable to easily detoxify mycotoxins from the system.

Mold Swing. A rapid change in mood due to a toxic mold exposure.

Mold Toxicity. Poisoning resulting from toxic mold exposures.

Mold Unfriendly Environment. A building or vehicle designed to prevent the growth of toxic mold.

Mold Warrior. Individual who is aware of negative responses to toxic mold and makes an attempt to avoid it, or individual who fights for the welfare of toxic mold sufferers.

Mold Zone. An area that constantly or frequently is hit with a large amount of airborne toxic mold.

Mother Colony. A growth of Stachybotrys or other toxic mold that feeds on a substantial amount of cellulose and a constant water source; often hidden from view inside walls or in other areas.

MSH (Alpha Melanocyte Stimulating Hormone). A hormone that regulates most aspects of innate immune response; often low in patients affected by toxic mold.

Multiple Chemical Sensitivity (MCS). A condition in which sufferers respond negatively to a wide variety of chemicals that do not affect most people; may abate with successful avoidance of toxic mold.

Multiple Susceptible (or Multisusceptible) Genotype. HLA DR category that indicates an individual who is unable to easily detoxify a variety of biotoxins from the system.

Multiply Antibiotic Resistant Coagulase Negative Staphlococci (MARCoNS). A bacteria that colonizes the skin and nose of MSH-deficient patients, making their recovery from mold illness more difficult.

Myalgic Encephalomyelitis (ME). Another name for the disease identified in the Incline Village patient cohort in the mid-1980s, characterized by specific and persistent immune system, hormonal, neurological and other systemic abnormalities.

Mycotoxicosis. Disease caused by exposure to toxic mold.

Mycotoxin. Poison made by toxic mold.

Mycotoxin Gradient. The mixed air/toxin distance from spore accumulations that gives hits.

Mycotoxin Release. Period of time when toxic mold and mycotoxins increase in the outside air; often occurs during weather changes.

Neurotoxin. Any chemical that has a destructive effect on the brain.

Normie. An individual who is not unusually influenced by small amounts of toxic mold.

Overreactivity. Being affected by very small amounts of toxic mold to a much more dramatic extent than the average person, due to complement activation.

Penicillium. A toxic mold that easily goes airborne.

Perceptify. Determine the presence of toxic mold in an environment or on an object by paying attention to physical, cognitive or emotional responses.

Personal Impact Rating (PIR). The extent to which an individual must make accommodation by avoidance with regard to the presence of toxic mold in order to be well.

Pfisteria. A dinoflagellate that carries a biotoxin.

Plume. A moving cloud of toxic mold spores, spore fragments and/or mycotoxins that causes an inside or outside area to be problematic for mold responders.

Plumed. Hit with a plume.

Poison Dust. Substance present in contaminated homes, comprised of toxic mold spore fragments and household dust carrying mycotoxins.

Potentiated Mycotoxins. Substance made or distributed by toxic mold and incorporating chemicals from the environment.

Power Curve. Extent to which a reactive individual can tolerate additional mycotoxin exposures; being on top of the curve provides more resilience.

Pre-contaminated (or pre-molded). A building or item contaminated with toxic mold during the construction, manufacturing or distribution process.

Pristine. Free of a level of mycotoxins or other substances having a negative effect on a particular mold responder.

Psychologize. The act of misattributing symptoms of mold illness or CFS to psychological causes.

Rainy Weather Response. The tendency of mold responders to experience negative symptoms just before and during rainy periods.

Raking. Tendency of mold spores to move through the air in search of a location providing the conditions in which growth can occur.

Reactivity. The extent to which an individual suffers negative effects that are more than transitory as a result of exposures to toxic mold.

Regular Bad Mold (or Regular Bad Stuff). Toxic molds previously studied by researchers.

Regular Mold. Fungi that do not manufacture mycotoxins.

Relative Shift. The extent to which one environment is found to be significantly better or worse than another; can only be ascertained insofar as the mold responder is not carrying the response from the previous environment on hair or clothing.

Remediation. The process by which toxic mold is carefully removed from a building, thus making it comparatively safe for the majority of the population; generally is not sufficient for tolerance by extreme mold reactors.

Safe Space (or Safe Zone). An area in a living space that is kept as clear of toxic mold as possible.

Satellite Colony. A superficial growth of a toxic mold on an observable surface; suggests the presence of a problematic hidden growth.

Satratoxin. A trichothecene mycotoxin made by Stachybotrys.

Secondary Contamination. The transfer of mold spores and spore fragments from an item that has been exposed to toxic mold to another item.

Secondary Metabolites. The poisons released by toxic molds.

Sensitivity. The extent to which an individual can detect the presence of toxic mold based on physical reactions.

Severe Responder (or Severe Reactor). An individual who experiences negative symptoms as a result of exposure to very small amounts of mycotoxins.

Shrieking Dream Response. The tendency of mold responders to experience nightmares when sleeping in environments contaminated with mycotoxins or toxic mold.

Sick Building. A building that has a high level of toxic mold, often accompanied by other problematic chemicals.

Sick Building Design. A building design conducive to the growth of toxic molds and chemical toxicity, characterized by centralized duct systems, sealed windows and high levels of insulation.

Sick Building Syndrome. An environmental illness apparently set off by exposure to toxic mold (often along with toxic bacteria and/or toxic chemicals) in a work or home environment.

Sick Region Syndrome. Area of the country that has high levels of outdoor toxic mold; Lake Tahoe-Truckee and post-hurricane Texas and New Orleans are examples.

Slam. A negative effect of a mold exposure that does not dissipate immediately upon obtaining distance from the item or area and the use of decontamination techniques.

Sourcepoint. A colony of mold that is emitting toxic spores.

Spore. The reproductive component of mold; toxic mold releases dormant spores that carry deadly poisons and that can remain viable for a very long time.

Spore Cloud. A clump of toxic mold spores and spore fragments existing in the air outdoors.

Spore Fragment. A piece of a dormant mold spore, especially one carrying mold toxin.

Sporulate. The release of dormant spores from a mold colony.

Spot Plume. The presence of toxic mold (or particularly problematic toxic mold) in just part of a building.

Stachybotrys chartarum. A damaging species of toxic mold.

Stachybotrys. A genus of mold that includes the species Stachybotrys chartarum and Stachybotrys atra; also known as Stachy.

Stressologizer. An individual who insists that mold illness or CFS is at least in part caused by psychological stress.

Suicide Response. A brief but intense desire to kill oneself after experiencing a mold slam; may occur in extreme mold avoiders who otherwise have no suicidal inclinations or ideations.

Suicide Season. The period of time between November and February, when outdoor toxic mold often exerts particularly negative effects on mold responders.

Super Bad Stuff. A particular substance, yet to be studied, that has particularly problematic effects on mold responders.

Super mold. A particularly damaging toxic mold.

Supertoxins. An alternative name for potentiated mycotoxins.

T-2 Mycotoxin. A tricothecene mycotoxin made by the toxic mold Fusarium and present in moldy grains; has been used as a biological weapon.

Tape Lift. A sample of toxic mold used to identify the species that are present.

Texass Effect. Phenomenon by which toxic mold and other chemicals in a particular geographic area cause problems in other places due to wind currents; in particular, the result of post-flooding problems in Texas in 2007-2010.

Thermalling. In hang gliding, seeking out pockets of air that have the potential of lifting the individual higher above the ground.

Threshold of Discernment. The level at which a particular individual can sense that toxic mold is present in the environment.

Toxic Mold. Certain species of mold that produce poisons that have a negative effect on people, animals, bacteria and/or other molds.

Toxin. A chemical substance that has a damaging effect on the body.

Toxin Release. The phenomenon by which adsorbed mycotoxins are released from objects; often occurs to an accelerated extent as a result of barometric pressure drops from weather changes or altitude increases.

Trichothecenes. Poisonous chemicals made by a variety of toxic molds.

Trigger. A chemical substance that has an effect on a sensitive individual.

Tumor Necrosis Factor Alpha (TNF). A pro-inflammatory killer cytokine; tends to be elevated in patients with Lyme disease rather than those with toxic mold illness.

Ulocladium. A common mold often found on wet sheetrock; rarely is a toxin former.

Universal Reactor. Individual with especially severe Multiple Chemical Sensitivity, exhibiting negative reactions to a very wide variety of chemical substances.

Unmasking. Spending time in a relatively pristine area, so that the chronic negative effects of toxic mold (or other toxic substances) will begin to manifest themselves in acute symptoms upon exposure.

Upregulate. Physical reaction to exposure to toxic mold (or other substance), by which complement becomes elevated.

Vacuum Exacerbation Response. The negative response of mold responders to the stirring up of spores as a result of vacuuming, cleaning or straightening up of an environment contaminated with toxic mold spores or dust.

Van Der Waals Forces. The possible action by which mycotoxins permanently bond with solid or porous objects, thus preventing them from being washed off or otherwise removed by forces other than denaturing.

Vascular Endothelial Growth Factor (VEGF). Substance responsible for blood flow in capillaries; often low in biotoxin and CFS patients.

Visual Contrast Sensitivity Test (VCS Test). An eye exam that detects the presence of toxins (such as mycotoxins and Lyme toxins) in the brain.

Water Damaged Building (WDB). A building that has had a water event such as a flood or leak, and thus may have been subject to mold growth.

Water Event. A flood, leak or other water intrusion into a building; should be addressed within 24 hours so that stachy and other toxic mold does not begin to grow.

Wilderness. An area without man-made buildings; often but not always characterized by low levels of toxic mold.


Copyright 2010, Lisa Petrison, Ph.D., and Erik Johnson

 

[slayadragon]

Anticardiolipin Antibodies

Here is a thread on the presence of anticardiolipin antibodies in CFS patients. These are similar to those observed in individuals suffering from ciguatera poisoning and various other conditions.

http://www.forums.aboutmecfs.org/showthread.php?5502-Ciguatera-Toxin-in-CFS&p=90725#post90725

My post, which discusses a couple of studies related to the phenomenon, is currently #13.

Damage to mitochondria is thought to be the source of the anticardiolipin antibodies. The question is what is causing the damage.

The authors speculate that the CFS patients could be suffering from exposure to this family of toxins (ionophores).

Viruses also seem to have an association with this phenomenon.

Interestingly, one of the other diseases that the authors mention as having this particular problem is prostate cancer. Thus far, CFS and prostate cancer have been the primary diseases associated with XMRV.

This all seems to fit in with the theme of this thread, and thus to be good food for thought.

Best, Lisa

 

[lululowry]

Slayadragon, I have not read all of this but I have to say that 4. Humid Days really hit home. I have been trying to figure out why I feel so terrible on pre-storm and storm days and why, after a good rain, I often feel so much better. I have a lot of reading to do about mold - just wanted to say thanks!

 

[slayadragon]

Dear Slaya

>I'm a mom trying to do some self help for my 28-year-old son. He’s been sick for eight years. We’re not ready to jump into full-on avoidance right now, but I’d like to know how big of a problem it might be for him. The cost of Dr. Shoemaker’s panel is way more than we can afford -- more than $1000! Do you have any suggestions about how else we might start looking into this?


This is a really good question. I think that the “unmasking test” suggested by Dr. Sarah Myhill (“I’m afraid you’ll have to go on holiday”) and long advocated by Erik (the “Godforsaken wilderness sabbatical”) are the best, but that takes a lot of effort and money with a not-certain result. If people go to a bad place, they won’t experience any improvements. And if they go to a really good place, they may find that they can’t return to their existing dwelling when they return.

Dr. Shoemaker’s panel is far too expensive for most CFSers without test insurance to do. In addition, it’s more designed to help people figure out if they have a mold problem at all, rather than one that’s particularly bad.

My belief is that while “extreme mold avoidance” likely is inappropriate for the majority of CFS sufferers, making sure that they’re not living in conditions that are WAY over tolerance level is a smart thing to do. If mold exposures are really high, it seems reasonable to think that they will not benefit as much from other treatments and possibly will continue to decline over time.

So I put some thought into how I would recommend that a friend or relative approach the situation. I think that perhaps it would be best to use a variety of kinds of tests, which approach the problem from different ways.

This is just my first try at putting together some thoughts though. Comments are welcome.


1. Toxic Mold Screening Questionnaire

It seems to me that the most important question for CFSers to be considering is whether toxic mold is a really serious problem in the place where they're living. I thus put together a questionnaire that looks at various situational factors.

Very few people will respond positively to all these questions. But the more “Yes” answers that are given, the more likely it may be that a serious problem does exist.

This questionnaire also can be used to think back on whether previous residences might have been problematic with regard to toxic mold. However, insofar as the main goal is to take appropriate action now, focusing on the current dwelling seems especially important.


2. VCS test.

This is an eye exam that screens for the presence of neurotoxins in the brain, developed by Dr. Ritchie Shoemaker. It can be taken online and costs $15.

www.biotoxins.info

Unfortunately, people who have toxic mold problems often pass this test. Also, a variety of neurotoxins (including mercury and Lyme) can give a positive result on the test. Therefore, it’s hard to make a conclusion about whether mold is a particular problem regardless of the result.

When I was first considering whether mold might be a problem for me, my vision was so dim that I could barely see. The results on the test were convincing to me. I suspect that this test is pretty good at identifying people who are living in catastrophically moldy environments, but some may still slip through the cracks.


I thus suggest using this as part of an overall evaluation rather than a “Yes/No” answer in itself.


3. Dr. Shoemaker’s Lab Tests

The most important test that Dr. Shoemaker has previously suggested to determine current exposures is the C4a. He states that this is particularly useful for mold exposures (as opposed to most other biotoxins).

Occasionally, people with mold illness do come up with a normal C4a on tests even though they’re living in bad environments. Again, that’s a reason to look at a group of measures. Based on what I’ve seen, people who are living in environments that are way above their tolerance levels tend to have very high C4a levels, so it seems to me a good clue.

Another test that Dr. Shoemaker now uses to test current exposures is the TGF B1 test. I don’t have enough information about its accuracy to suggest it though.


4. The “Exercise Test”

It’s my belief that CFSers will have a hard time doing any exercise at all while living in a bad environment. In many cases, walking from the bedroom to the bathroom is more “exercise” than an individual can handle.

Insofar as people can exercise (whatever that means for them) more outside their homes than inside it, that suggests to me that the home is a big problem.

Thus, gauging whether exercise seems more doable outside the home may be useful. Nobody should push it though! The idea here is to see what the body is easily able to do, not to force it and then end up back in PEM.

Spending most of a day outside or perhaps overnight in another location will be the best way to do this test, since the body may take time to rest. Trying different locations for comparison purposes may be useful too.

Because many CFSers are affected by the small amounts of mold toxins on their hair or clothing, showering elsewhere and then putting on new clothes that haven’t been exposed to the suspect dwelling might be a useful addition to the experiment.


5. The Weather & Activity Journal

CFSers often keep journals of how they are responding to factors such as medications or supplements. Less often do they do so in order to keep track of what’s going on in their environment.

This experiment will keep track of a number of factors related to mold exposures including:

* Barometric pressure drops

These cause mold colonies to release their spores in the hope of having them spring into live mold as a result of rain. A device to keep track of barometric pressure can be purchased at Wal-Mart, or just look to cloud cover.

A web site that provides barometric pressure readings is here:

http://www.wunderground.com/weatherstation/WXDailyHistory.asp?ID=KNVINCLI5


* Wind direction.

Sometimes wind direction and speed will matter. This especially is the case if the wind is blowing from a place that is suspected of being bad.


* Time spent away from the home.

Keep track of various places visited. Be sure to write down EVERYWHERE visited, since even a short time in a really bad place can cause some people a downturn that can go on for days or weeks.

Sometimes people do not feel bad until several hours after an exposure. Thus, if a downturn occurs, think back to what happened over the past day or so to see if anything suspicious can be identified.

Outdoor places as well as inside buildings should be considered.


6. ERMI Test

This is a DNA test of mold in the home. Insofar as a home is really bad, the test might pick up on it. The test costs $340.

Previously on this thread, I talked about Dr. Mary Beth Short-Ray and environmental mold testing. Here is the site with the test for sale:

http://www.toxic-black-mold-syndrome.com/MOLDHELPSTORE.html

I don’t suggest any of the other tests on this site except the ERMI.


7. Am I A Moldie?

The response that I usually get when I list various symptoms that are associated with mold reactivity is, “But those are just general CFS symptoms.”

Insofar as mold reactivity is an inherent part of CFS, this makes sense. But that doesn’t help people who don’t know yet if they believe it’s an issue for most CFSers.

I thus am including not only symptom descriptions, but a list of situational factors, in one of the posts below.


Best, Lisa

 

[slayadragon]

Toxic Mold Screening Questionnaire

This screening questionnaire is not designed to give CFSers a definitive answer about whether toxic mold in general is a problem for them.

It is only designed to look at whether it seems possible that it's a particular problem in their current residence.

There are specific reasons why each of these factors is relevant. I will post explanations soon.

Best, Lisa


*


YOUR CURRENT HOUSE

* You are aware of a water event having happened at some point in your home. This could have been even a small amount of flooding (e.g. from a broken air conditioner or toilet overflowing) or a burst/leaking pipe where the water problem was not addressed within 24-48 hours.

* A water event like this at any time during your illness was followed within a relatively short period of time (e.g. a year) with a decline in your well-being.

* Your house has a basement or laundry room (especially if below ground) that you don't "monitor" very closely for water problems or wall discolorations.

* You have/had cracks or water spots on your ceilings or walls and haven't taken steps to make sure that mold is not a problem in those places.

* Your home has a flat roof.

* When it rains hard, water outside (e.g. on a sidewalk) runs/ran in the direction of your house.

* You live in a neighborhood where homes are known to flood easily.

* You have a sump pump that occasionally or frequently allows some flooding.

* Your house is very well insulated or sealed, allowing little air circulation from outside.

* Your house uses an HVAC (ductwork) system rather than radiators.

* You have older windows in your house and haven’t checked to see if they need to be replaced.

* You have walls made of drywall, fiberboard or other cellulose-based products in your home. (Check especially in rooms where water intrusions might occur, like in basements or laundry rooms.)

* You have paneling in your home, especially in a room below ground like a recreation room.

* You have noted design or construction problems in your home that you wish the original builder had handled differently.

* In carefully examining your home, you note dark smudges on the wall that look more like dirt than mold.

* You previously noted dark green or black mold growth (e.g. on a wall or carpet) in your home, but believe you've gotten rid of it all.

* You’ve uncovered mold during renovations of your home, but believe that you’ve gotten it all.

* You or others have noted the smell of mold in your home.

* You live in a house that is more than one year old.

* You suspect that your landlord or your home’s previous owners did not take really good care of it.

* You get a lot of mildew on your shower curtain, window panes, and plants.

* Onions in your home get moldy before they dry up.

* Your clothes start to smell midewed if you leave them in the washer for more than a short while.


YOUR NEIGHBORHOOD

* You live in a city.

* It feels like your city doesn’t get good air circulation (e.g. has a “haze” that hangs over it).

* You live in a valley (even if it’s just 100 feet below the surrounding area).

* You live near a lake that’s host to a lot of algae.

* You live in a hot, humid climate where air conditioning is used a lot.

* You live in a wooded area where fire retardants often are used.

* You live in a place with strong CFS support groups, a historical CFS epidemic, and/or thriving Fatigue & Fibro Centers (FFCs).

* You’ve met at least a few really sick CFS patients from your local area online or in person.

* You’ve been able to find local doctors who seem well-versed in CFS and have other patients like you.

* You live in California (especially the SF Bay Area), Texas (especially Dallas/Ft. Worth or Houston), Boston, Louisiana or England.


HOUSEHOLD MEMBERS AND NEIGHBORS

* Someone else previously or currently living with you has unexplained health problems (e.g. CFS, fibro, ADHD, MS, autism, Asperger’s, unusual tumors, "liver problems," miscarriages, infertility, SIDS, heart problems, thyroid problems, depression, "just plain tired”)

* Someone else previously or currently living with you has mood issues (anger/rage, depression, bipolar depression, suicidal feelings, lethargy, underachievement, withdrawal, anxiety).

* You have one or more pets that seem unhealthy for their age (e.g. lethargic, howling, stiff, cancer, “acting up”).

* You are aware of other people in your building or neighborhood who are sick with any sort of odd or unexpected illnesses.


REACTIONS TO YOUR HOME

* You or someone else has noted that it seems like there's something wrong with the air in your home or workplace, but have blamed it on something like cigarette smoke, the presence of a pet or poor air circulation.

* You feel like certain other people’s homes feel more comfortable than yours, but you’re not sure why.

* Blow drying your hair makes you feel really exhausted.

* After a shower, you find that you need to lie down and/or that your heart is beating fast.

* You feel worse when you or someone else vacuums the house.

* You feel worse when running the clothes dryer or folding laundry.

* Cleaning closets or straightening up piles of belongings can make you feel a lot worse.

* You feel better in some parts of your home than others.

* When you spend time outside, you often feel better in other places than you do in your own backyard.


HISTORY

* You live in the same home that you got sick in.

* You’ve gotten worse while living in your current home.

* You were spending most of your time in your current home (rather than working outside the home) when you got sick.

* You still have a lot of your clothes, furniture, books/papers and other belongings from the house you got sick in.

* When you’re at work (or when you were working), you felt as good or better than you do when at home.

* People at the place where you were working when you got sick seemed generally pretty healthy and in good spirits.


SYMPTOMS

* You have a lot of static shocks.

* You have heart pain/palpitations, horrific headaches, very deep skin dents, suicidal feelings, sensations of skin burning, a tender spot (like a marble) at your sternum, feeling of your brain and spinal cord swelling, trembling even when it’s not very cold,

* You feel more poisoned (or like a fly caught in a web) than fatigued.

* You often feel a bit better if you can drag yourself out of bed, even if you don’t leave the house.

* You find it necessary to drink a lot of water when at home, but not always so much when you’re away from home for a while.

* You react very poorly to supplements or drugs that are designed to address pathogens (e.g. antivirals, antibiotics, antifungals) or toxins.

* You have candida problems that are out of control

* You have a doctor who seems to help other patients, but his/her treatments do not seem to be working very well for you.

* You have a feeling of pain in your lungs or an ongoing cough.

* Sometimes you wake up and are covered with clammy sweat.

* You have chemical sensitivities that are getting worse.

* You have a hard time reading unless it’s in bright sunlight. Everything looks a little dim.

* You feel much worse prior to or during storms (when the barometer is dropping).

* Sunny days make you feel considerably better.

* Your health takes a big downturn when fall comes.

* Getting ready to go out or getting packed for a trip is really hard.

*You have a hard time drawing a deep breath.


GETTING OUT OF THE HOUSE

* You feel _different_ (though not necessarily better) when away from the house for several days or more. Or you alternate while you're away between feeling pretty good and being dead tired.

* You have a very hard time dragging yourself out of the house (e.g. to go out to dinner or for another relaxing activity) but often feel better for a while once you do go out .

* Swimming or spending time in outdoor pools (but not indoor pools) has appeal for you.

* You have certain friends or relatives that you like to visit because you just feel good there.

* Sometimes when you spend a night or two away from the house, you find you “sleep like the dead” in a way you usually don’t at home.

* Sometimes when you go out, you feel fine until you get back home. Then you just collapse.

* You often feel especially tired and bad when you return home from a trip (possibly attributing it to "crashing" from the accumulated stress or from being depressed that you're no longer on vacation)

* You’ve had one or more experiences where you’ve gone on a trip and “come back to life.”

* Sometimes you look forward to going out but then feel awful. Other times you don’t feel like going out, but feel pretty good.

 

[slayadragon]

Am I A Moldie?

Below are some situational "clues" and symptoms that seem to be associated with toxic mold illness.

They are compiled from observations from a few different doctors specializing in mold illness, as well as my and other CFSers' personal experiences.

This is a long list, but I had just about all of the symptoms on both lists prior to mold avoidance.

Now they're all gone.

Best, Lisa

*

PREFERENCES:

* You often feel worse when you stay in big hotels with centralized duct systems.

* You often feel worse in big indoor shopping malls.

* You’ve felt really bad in schools or government buildings

* Stores like Home Depot and Wal-Mart bother you.

* Starbucks and Panera feel good to you.

* You sometimes avoid going to certain places or driving certain routes, because doing so makes you feel worse.

* Air travel takes a real toll on you.

* You feel especially drawn to the mountains, seashore or desert.

* Vacations in less “civilized” areas sometimes feel really good to you.

* There are certain places that you got that feel really good to you, but you’re not sure why or attribute it to “good chi”/“feng shui.”

* You’ve had experiences on vacation or travel when you’ve felt absolutely awful.

* You’ve felt particularly bad on vacations to Dallas/Ft. Worth, Houston, New Orleans, England, Boston or the San Francisco Bay Area.

* You’ve felt better on a vacation to Greece, the Caribbean or other places with similar climates.

* If you were feeling up to doing a little exercise, you’d much rather do it outside than inside.

* Usually when you go to the doctor, you feel worse during and after the visit.


SYMPTOMS

* Sometimes when you go shopping or other places, you feel short-tempered or lose your temper with people for no particular reason.

* Sometimes your moods seem out of control. You can get angry with people or severely depressed, even though there doesn’t seem to be any particular reason why.

* Sometimes when you go out, you unexpectedly feel so faint that you need to sit down or lie down.

* Sometimes when you go out, you have a sensation that “I’ve got to get out of here” for no reason.

* Sometimes for “no reason” you can do more “exercise” (whatever that means to you) than at other times.

*


HEALTH SYMPTOM LIST

BRAIN:
Headaches
Poor memory
Trouble concentrating
Trouble learnings
Trouble finding words
Trouble handling numbers in head
Confusion
Vertigo
Disorientation
Seizures
Trouble speaking fast
Trouble understanding fast verbal information
Trembling
Vocal or motor tics
Abnormal reflexes
Strokes
Edema or swelling in brain

EMOTIONAL:
Mood swings
Mania
Irritability
Impulsivity
Increased risk taking
Decreased speech smoothness
Poor stress coping
Increased verbal fighting
New lateness
Poor empathy
Poor boundary awareness
Immaturity
Spaciness
Rigidity
Poor insight
Decreased productivity
Unable to process trauma or interpersonal pain
Increased narcissism
Forgetfulness
Poorly organized or obsessively organized
Dead creativity
Depression
Anxiety
Panic attacks
Decreased attention

EYES:
Light sensitivity
Red eyes
Blurred vision
Tearing
Eye pain
Burning eyes
Low visual contrast

HEARING:
Sound sensitivity
Decreased hearing

MOUTH:
Metallic taste
Saliva with blood streaks

NOSE AND SINUSES:
Chronic infections
Sniffing
Tingling nose
Nasal itching
Stuffy nose
Runny nose
Blood streak in saliva or nasal mucous

THROAT AND LUNGS:
Cough
Erosion of membranes
Shortness of Breath
Sore throats
Cold or Flu symptoms
Chest pain
Wheezing
Voice changes

STOMACH AND INTESTINES:
Ulcers
Indigestion
Nausea
Vomiting
Sloughing and death of intestinal villi
New Reaction to wheat or dairy
Diarrhea
Constipation
Belly pain
Bile duct disease

LIVER:
Fatty liver
Liver cancer
Abnormal liver lab tests
Jaundice or yellowing

SKIN & HAIR
Numbness
Tingling
Hair loss
Diverse and severe rashes
Itching
Blisters
Burning skin sensation

MUSCLES AND JOINTS
Cramps
Stiffness
Joint pain
Cartilage damage
Muscle Aches
Delayed Recovery
Sharp Stabbing Pains
Lightning Bolt Pains
Morning Stiffness

HEART AND BLOOD VESSELS
Heart Muscle damage
Heart muscle inflammation
Chest pain
Red or pale skin

REPRODUCTIVE TISSUE & GROWTH
Increased Testicular cancer
Vaginal irritation
Decreased sperm production
Erectile dysfunction
Decreased sex drive
Irregular or stopped menstrual cycle (when not menopause)

HORMONES & HORMONE TISSUE
Low DHEA
Low MSH
Low Free Testosterone
Low Androstenedione
Low Cortisol
Abnormal cortisol regulation
Damage to Adrenal glands (Makes Cortisol, DHEA and ADH)

OVERALL BODY:
Fatigue
Weakness
Malaise
Eccentric weight gain
Low Motivation
Occasionally eccentric thinness
Bizarre pain
Ice pick pain
Lightening bolt pain
New chemical sensitivity
Spinning sensation/Dizziness
Increased thirst
Frequent urination
Shocking sensation (e.g. when touching light switch)
Sweats
Temperature variation
Appetite swings
Easy bleeding or bruising
Swelling
Trouble walking or running easily
Reduced coordination
Rapid pulse
Low temperature
Jerky movements
Abnormal Blood Pressure (low or high)
Fever
Chills
Post Exertional Exhaustion
Increased tumors

PREGNANCY
Fetal abnormalities (birth defects)
Infertility
Miscarriages

 

[slayadragon]

Poll

Ecoclimber started a poll and a thread related to XMRV and toxic mold here:

http://www.forums.aboutmecfs.org/showthread.php?5578-Toxic-mold-amp-xmrv-poll

There's some good discussion on the thread.

Best, Lisa

 

[soulfeast]

Stachy in home.. behind shower wall but grout cracked. reading Shoemeaker's book and find it interesting his comments on biotoxin pathway markers.. if yours are fine then you are fine in a moldy or mycotoxin environment per chance.

If your markers are not in healthy range, if he is right and others who have reported to me the same through experience are right then I may need to leave this environment (including the 100 acres of diciduous woodlands we live in) *at least* until my markers are healthy and quite honestly by that time, I think we will be ready to move on.

We will either store or trash belongings and start again. Ive started testing including Real Time Lab's my mycotoxin test, labrcorp IgE and IgM (for stachy) and shoemaker's bio markers.

Had a man walk up to me in gro store this past week. ran into my neighbor and told her about mold issue.. he heard walks up and tells me he has recovered from mold illness... thought it was a treated for lyme and that made him worse. .. he also said the same things Lisa is saying.. LEAVE THE HOME AND YOUR BELONGINGS.. so you can recover. He thought he could go back to his home and wear a tie to a function that he still had there.. it put him back so hard that he thought he was going to die. Came out of it in a few weeks.

From what I understand, exposure to mycotoxins which gas out from sprores embedded in clothing and furniture will make you sick, put mnore stress on your detox pathways as well as the biotoxin pathyway.. the inflammation pathway.

Im this close to doing it. We are looking for townhome tomorrow and getting rid of non essential papers, cardboard boxes, old stuffed toys the kids will part with.. otherwise go in sealed plastic containers (and I understand that not all plastic will stop the outgassing).. then my library of books.

Im sick of this and my symptoms are classic.. burning lungs, burning nose, swelling in brain which I am now nticing is followed by more symptoms. Thickening of bronchial tubes in lungs, horrible state of affairs in my sinuses.

Shoemaker HLA type.

I was not sick until 5 years ago.. they may be about the time the crack appeared in the grout in the shower. right before the remdiation I was having shaking attacks and went to hospital because of breathless ness, chest pressure, and strange allergic type feelings.. they checked me for everything and nothing. Remediation soon followed to reveal the stachy.

I dont care to get obsessive about this and it certainly looks obsessive to move and throw everything you own out (or store it until the mycotoxins die off) but....

Ive skimmed this thread and I dont get the resistance to information that I may or may not be reading. No one is making anyone move and get rid of their things. But I may very well join the crowd who is.

 

[soulfeast]

I recently read that the mycotoxins from the stachy could have been out gassing the whole time it was behind the tile esp with the crack. I got the the point where instinctually I stopped taking showers in the master bath then I stopped sleeping there.. not clue why other than I was associating attacks (shaking attacks) from sleeping in MBR.. in fact, my illness began with a shaking attack that I guessed was babesia and it might have been but so many clues that are for some reason so easy to begin to be in denial about. It is surreal.. a knee wall in a shower. I am also testing for XMRV when the serum test is out. Wouldnt the inflammation cascade from mold exposure cause XRMV to manifest?

my kids.. hard core chronic candida.. which others are reporting to be an issue when living in a molded enviroment.

 

[Forebearance]

Best wishes soulfeast!
I hope that your move goes well.
The Dr. Shoemaker biomarkers are really helpful in figuring out if you have mold poisoning, I think.
Yeah, I totally understand what you mean about the possible interaction between XMRV and mold exposure.
There could definitely be something going on between them. One might encourage the other somehow.
It really feels like it to me.

I'm sure people have probably mentioned this to you, but please be prepared for the double-edged sword of moving away from a moldy place. On one hand, you might feel a lot better, but on the other hand, your sensitivity to mold toxins might go through the roof. And you might notice an increased sensitivity to chemicals.

My suggestion would be to not buy a lot of new stuff to replace the old stuff you put in storage or got rid of. I've learned to live with as few possessions as possible. You might run into some kind of situation in the future where you need to start over yet again with nothing.

Forebearance

 

[soulfeast]

Thank you, Forebearance. You've made this move?

Oh no. I can see the hyper sensitivity occuring. What do you mean about having to start over? Something in new environment becomes a trigger?

I see what you mean about few possessions.. I have already started to feel that just comtemplating moving. Whats the use in all I have accumulated? How many of these books did I even read once? How many of these clothes and shoes do I wear?

The bulk purchasing at the gro store because I dont know when i will feel able to go again.

Having more house than I can take care of as well. Things, things everywhere.

So many things to sort through as well. Things I will never really use again most likely or if I do.. when?

I had close to a truck load of packing peanuts and styrofoam in a storage room waiting to be taken to Fed Ex local because they will resuse or say they will. I threw it all out today. Im too sick to do the work of recycling it and it has to go. Same thing with bags of my kids clothes.

 

[Forebearance]

Oh yes, I've made this move. I did it about two years ago.

It took me three months to sort through everything and pack up and move. I was really sick at the time. I got as much help as I could beg and buy. I understand what you mean about giving up on things you were going to recycle and donate. You can't do everything in this situation.

Something I'm glad I did is I scanned my favorite pictures onto my computer and also copied my favorite music CDs onto it. Then I put them and some important documents onto my online storage. It's a comfort to know I can get them if I need them.

The hypersensitivity is like the guy in the grocery store who couldn't wear his old tie anymore. Stuff like that. It's a normal part of the healing process. At least until they invent a better way to get over mold poisoning. (well, actually, probably Dr. Shoemaker has some drugs that can treat it)

The thing that happens when you become hypersensitive is that luck plays a part in your life.

Some people move into a new place and are fine and proceed to get better. Other people, like me, move into a place that happens to develop a mold problem and have to move again.

So it could possibly happen that you'd have to move again at some point in the future, if as you said, something in your new environment becomes a trigger.

You can probably see why some people eventually give up on buildings altogether and just go live in a tent or an RV. Anything that's made out of wood and drywall could potentially grow mold on it. There are some wood-free RVs out there. But I hope your family doesn't have to go that far. (unless you want to)

It's a tough situation because on the one hand, you know it's a bad idea to stay in a moldy home. On the other hand, it's not a piece of cake to live with the hypersensitivity.

I guess there are quite a few people by now who have concluded that it's worth it to move and start over with nothing. I feel like it's been worth it to not feel like I'm half-dead any more. But it has been hard.

I'll be thinking of you!

Forebearance

 

[jenbooks]

If you're going to move and you were in a mold contaminated house get rid of almost everything. I got rid of a lot and still had way too much. It's all packed up and hefty bagged in a friend's basement. Later we dumped a lot more at Good Will but there's STILL too much.

If you want to find a nontoxic nonmoldy home custom built and can move out of state, go to mcssafehomes.com and get a subscription to Our Toxic Times and get their email newsletter. But be sure to ask LOTS of questions. A lot of owners hide information--like unsealed cedar trim in the house, or dog dander, or stinky paint, or pesticide use etc. But many houses have been well built and don't have mold.

 

[soulfeast]

Thanks, Jenbooks. Saving that link. We found out that the home (new) my father had built to sell but we can transition in has fusarium in outdoor counts. I dont know how much is too much and have questions out.. if any of you know, please let me know. We were hoping to use this house as a base to look further and to a more arid place.

If you're going to move and you were in a mold contaminated house get rid of almost everything. I got rid of a lot and still had way too much. It's all packed up and hefty bagged in a friend's basement. Later we dumped a lot more at Good Will but there's STILL too much.

If you want to find a nontoxic nonmoldy home custom built and can move out of state, go to mcssafehomes.com and get a subscription to Our Toxic Times and get their email newsletter. But be sure to ask LOTS of questions. A lot of owners hide information--like unsealed cedar trim in the house, or dog dander, or stinky paint, or pesticide use etc. But many houses have been well built and don't have mold.