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Mold, Dr. Cheney and ME/CFS

slayadragon

Senior Member
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1,122
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twitpic.com/photos/SlayaDragon
Rich mentioned on another thread the CureTogether survey related to rating different ME/CFS treatments.

http://www.curetogether.com/chronic-fatigue-syndrome/treatments/

Methylation treatments are doing well on that survey.

Unfortunately, mold/biotoxin avoidance treatments are not even mentioned as an option.

Considering that this approach has brought a number of people to near recovery and helped many others substantially, this seems to be a major omission.

If folks here have benefited from avoidance -- or would like to see ratings on it -- would you please write to the CureTogether website and ask them to add it?

http://www.curetogether.com/contact.php

Thanks much for your help.

Best, Lisa
 

richvank

Senior Member
Messages
2,732
Rich mentioned on another thread the CureTogether survey related to rating different ME/CFS treatments.

http://www.curetogether.com/chronic-fatigue-syndrome/treatments/

Methylation treatments are doing well on that survey.

Unfortunately, mold/biotoxin avoidance treatments are not even mentioned as an option.

Considering that this approach has brought a number of people to near recovery and helped many others substantially, this seems to be a major omission.

If folks here have benefited from avoidance -- or would like to see ratings on it -- would you please write to the CureTogether website and ask them to add it?

http://www.curetogether.com/contact.php

Thanks much for your help.

Best, Lisa


Hi, slayadragon.

I just added mold avoidance to the list of treatments at CureTogether.com. Note that people need to sign in to the site before they can take the survey there.

I also added the Pall protocol, which was not listed, either.

Methylation treatments have now dropped to 33rd position out of 98 listed treatments. More people have reported on their experiences with them, noting the detox symptoms that are produced. I think this is an important factor to mention, and I hope that additional people will take the survey. Cort has posted that he intends to add a treatment survey to the Phoenix Rising site, also, and I think these types of surveys can be very helpful to people who have chronic disorders. Dr. Sidney Baker has been developing this kind of approach, also, including patient characteristics with the treatments they have found to be helpful, with the idea that people will be able to access the experiences of others whose situations are most like their own. That is a more focussed approach, taking account of the many differences between people, but I think the basic surveys are worthwhile as well, since some treatments do seem to help a significant part of the population that have a particular disorder, such as CFS.

Best regards,

Rich
 

Wayne

Senior Member
Messages
4,298
Location
Ashland, Oregon
Cort has posted that he intends to add a treatment survey to the Phoenix Rising site, also, and I think these types of surveys can be very helpful to people who have chronic disorders.

I will look forward to this getting set up. Although I did go through the entire process at CureTogether, I found it fairly taxing and often times confusing. So I'm hoping Cort's survey will be a bit easier to navigate, which should encourage more participation.

Wayne
 

Wayne

Senior Member
Messages
4,298
Location
Ashland, Oregon
Unfortunately, mold/biotoxin avoidance treatments are not even mentioned as an option.

Hi Lisa,

I'm pretty sure anybody who registers can add any treatment they've found to be effective. I myself added atlas profilax because of the significant improvements I achieved from having my atlas properly aligned.

Best, Wayne
 

floydguy

Senior Member
Messages
650
When this person contacted Lisa to inform her about their lack of progress, Lisa suggested they "go camping." I find this appalling, reckless, and dangerous, and rather unconscionable.

Really, don't you think this is a bit over the top? We have threads on people going to Mexico for stem cell therapy and people taking ARVs and you are upset over a suggestion to go camping? Just saying...
 

JanisB

Senior Member
Messages
247
Location
Central Ohio
Thanks for posting that Jenny. It's heartening, as I've gotten almost recovered several times but always relapse. I finally started to think I'd never get well, but your comments give me lots of hope.

Lisa, I know mold is an issue. I think I denied it in the past because I didn't feel anything from a minor exposure the way I used to feel. But I look back at my history now and see how much worse I got once I moved to Ohio, how I got one infection after another my first year, got to an allergist my second year and overreacted to all the pinpricks, constantly had a runny nose. Six years of this were the prelude to getting CFS, and I wonder if I might have gotten a big exposure shortly before that although I can't recall it. Reading shoemaker's surviving mold is helping me to understand how each successive exposure weakened my system and lowered my MSH to the point where eventually, my hypothalamus gave up the ghost.

Did you try cholestyramine before you went out West? Any of the other drugs like erythropoetin and VIP? I usually hate to try drugs due to my propensity to get all the worst side effects, but I am not sure where and how to find a safe place. I read nearly all of Eric's book, but I am not willing to live in an RV and besides, here in Ohio, there is mold growing everywhere. What I would consider doing is renting my house for a year and taking a sublet for a year in some safe zone if I could figure out how to find a safe place.
Anyway, I have gone on too long. Thanks to all for your helpful comments.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
Hi Janis,

I'm afraid I don't know how to give you any advice on this, on this board.

It is my strong belief that the reason that many people on this board are so ill with ME/CFS is because they are living in an area with problematic outdoor air, related specifically to a certain sort of biotoxin.

This biotoxin, some of us (including Erik) believe, is responsible for the Lake Tahoe epidemic in the mid 1980s, in terms of the weird severe symptoms reported in Osler's Web. It is present in quantity in certain specific places, some of us have found.

Erik has been trying to get people to look into the role of this biotoxin in ME/CFS for the past 30 years (before the epidemic, when he was observing just some scattered cases of the disease -- associated with places where this biotoxin was especially concentrated). It currently is being investigated by the World Health Organization, so perhaps we will finally find out what it is.

However, I currently cannot give you details on what it is. I personally believe that it is a particularly problematic kind of cyanobacteria that grows in certain sewers and certain other places (such as wooded areas that have been treated with fire retardants), but it could be some other form of biotoxin such as a mold.

Regardless of what it is, this substance exerts a tremendous effect on people who have ME/CFS. Like mold, it does not cause us to get sick, I believe. What I do believe is that it causes people who already have this disease to be outrageously, horrendously, life-destroyingly sick.

Unfortunately, a number of people on this board suffer from heavy exposures to this substance. Other people are affected by lighter exposures. This is all regardless of whether they are living in a good or even pristine building in terms of mold.

Like indoor mold, this substance is "sticky" enough that contaminated belongings can keep ME/CFS sufferers from making substantial progress toward wellness, I believe. Because its acute effects manifest in symptoms that people feel are "from within" (such as "sensory storms" and suicidal impulses), with chronic effects that are subtle (apparently, we believe, on the heart and immune system), people usually do not believe they are being affected by any toxin even when they are in a place that has horrific amounts. And they certainly don't understand, when they move to another place, that the small amounts on their belongings from (say) living in a bad place for a month could be having a major effect.

I bring this up because, I believe, it is of critical importance in answering your question.

I believe that people can make major progress from this disease "merely" by moving from a bad building to a decent one. This especially is the case if they don't bring along any contaminated possessions. However, even that may not be absolutely necessary in terms of making some improvements. I recently heard from someone on this board who moved from a very moldy home to a better one, discarded some belongings and washed the rest, and experienced a "20% improvement" within four months. This person had had first-rate care from a well-known ME/CFS physician prior to that, but nonetheless found that improvements "just" from moving and reducing exposure substantially from belongings, and plans to look at ways to further reduce exposure in the future.

I see no reason why other people cannot follow this path. Certainly, it is impressive that Erik has managed to take charge of his health so much just through committed biotoxin avoidance (including, most especially, absolutely scrupulous avoidance of this outdoor substance). However, this clearly is an unrealistic path for others to follow. It is way too hard for most people, and too life-limiting. And, the previous story suggests to me, people can make substantial improvements (as great or greater than those touted by even the best ME/CFS doctors) just by living in a good building without a lot of contaminated stuff.

Making sure that a building is good is a little tricky, for people who are not yet unmasked from mold. Nonetheless, especially for people who have an instinctive understanding of how various treatments can affect their health, it can be done. Forebearance, for instance, is an example of someone who managed to get a good feeling for which buildings are good vs. bad, just by experimenting with being in different buildings and watching how her symptoms change, and she reports substantial health improvements as a result.

Perfection, I believe, is not necessary. Pushing in the right direction can be worthwhile.

The problem here is that if people move into a place with substantial amounts of the substance that is being investigated by the WHO, they will not get well. Rather, they may experience the most severe of ME/CFS symptoms.

A few people on this board appear to have done just that. It is my belief (though I cannot check since I will not go to places that I believe are this bad for fear that I will wholly and possibly permanently jeopardize my own recovery) that although these individuals have been scrupulous about leaving their moldy homes, discarding their mold-contaminated belongings, and choosing a new place that is okay in terms of mold, they have moved into an area that is just as bad or worse than the place that they just left in terms of the outdoor substance that terrifies me most.

I cannot be responsible for this happening. I myself lived in a moldy home, and I was extremely sick as a result. But it was nothing -- NOTHING! -- compared to the symptoms that I got after a six-hour run-in with this outdoor biotoxin in Lake Tahoe. It was the difference between having my system shut down to the point of being close to death.....and being in the worst hell I could possibly imagine.

And having people go through the stress of a move, and lose all their belongings, prior to having this happen is the icing on the cake.

I continue to feel guilty about those cases. Part of it is because of the effect it has had on them. In addition, their stories suggest that "I moved and got rid of my stuff, and it didn't help, so mold is not an issue in ME/CFS for all patients." This makes people doubt the phenomenon when -- in my belief -- it actually is something of relevance for ALL patients rather than just an idiosyncratic irritant that affects some people rather than all of us.

This is where my problem comes in.

I have tried on many occasions to discuss this outdoor substance on this board. Each time, a few individuals have attacked my comments and attempted to undermine my credibility as a result. The last time I did so, on this thread, one individual eviscerated me in no uncertain terms (getting support from another board member) and then got a moderator to give me specific instructions not to discuss it any more on this board.

As a result, I stopped discussing biotoxins at all on this board. A number of other individuals (on their own initiative -- I didn't request it) also stopped discussing mold or any other biotoxins on this board, despite their success in improving their health as a result of addressing them, for fear of what would happen to them if they did.

I since have had conversations with Mark and Cort about this topic. They made a clear statement to me that they wanted talk about mold on the board to continue, that they believed it was an important part of the illness for at least some sufferers, and that insofar as people violated board rules in terms of trying to restrict such discussion, their comments be reported to the moderators. Some of the rules that have been violated by critics on this very thread, and that are still here, include the following:

While we honor passionate and informed discussion we will not tolerate rudeness, insulting posts, personal attacks or purposeless inflammatory posts. Personal attacks include:

* Attacking someone's character
* Referring to members in a pejorative way
* Referring to a treatment that works for someone in a pejorative way
* Sarcasm intended to belittle someone's beliefs, treatment preferences, etc.

My posts on this thread did not violate any of these rules. Nor has anyone pointed out that any of my posts on any other thread have violated these rules. Other posts did violate these rules.

Nonetheless, I was informed by a moderator earlier on this thread that my discussion of this matter was to stop. And despite Cort's and Mark's encouragement to me in private that I continue to post on biotoxins (or at least on "mold"), that moderator warning still remains here.

I thus feel restricted in what I can say. Perhaps this very post will result in my being banned from this board. Regardless, I cannot in good conscience say anything other than what I have on this post in terms of giving people input in terms of how to pursue this. Ignoring the outdoor substance has the potential of creating such harm that it would be immoral of me not to bring it up clearly, I believe.

In short, there are ways to do this that don't involve living in a tent in the desert or in an RV. Many people have benefited without even owning an RV. If folks here would like to pursue this course, I am willing to help them. And I can direct them to other people who potentially might be able to help them too.

Having my character attacked here and being warned not to talk about the absolute core components of this approach on this board has made me conclude that I cannot do it here, however.

Thanks much for your note.

Best, Lisa
 

JanisB

Senior Member
Messages
247
Location
Central Ohio
Here is an article from the New York Times about how building construction in NYC is changing as a result of concerns about toxic mold.

http://www.nytimes.com/2011/02/13/realestate/13posting.html?_r=1
That was a good article. Thanks for posting Slay.
I'm currently reading Shoemaker's Surviving Mold and thought I'd add something from his book the article doesn't mention: the mold resistant drywall often uses fungicides that have actually caused the mutation and spread of more toxic mold species. He refers in one chapter to these resistant molds growing rampant on the drywall.

I hope, but doubt, the state will look at the big picture and reinforce the various problems with improper repairs, condensation, and so forth. Then there is the problem many people have of improper ventilation in bathrooms which become mold traps.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
hi Slaydragon,
I had a mold inspector out to my house the other day (after friends were complaining my house smelt like mold and one who stayed the night ended up sick). He's going to ring the government housing people who i rent this house from and try to get them to fix it and said to me that he's sure the degree my house had/has would of affected my health. He also said he'd phone my doctors to get them to get me tested for mold (something about spores can go into the blood). Do you know of this mold blood test?

He said it needs to be treated by using ozone which kills the mold.. then mold removal (he said mold removal without killing it first is no good)... followed up by something that is sprayed about the place to coat walls etc.

The mold I have here is apparently black mold (I'd previously thought we didnt have dangerous molds in Australia) and the inspector said the one in her the worst kind of mold in regards to causing health issues.
...........

If anyone here is in Sth Australia is wanting a free mold inspection of a house which they think has issues... you can phone a company called PureProtect (Peter Norris 0420 756 214). This guy even came out to my country area free of change to do the inspection :) . (and wasnt pushy about anything but is just going to get onto those i rent from).
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
That was a good article. Thanks for posting Slay.
I'm currently reading Shoemaker's Surviving Mold and thought I'd add something from his book the article doesn't mention: the mold resistant drywall often uses fungicides that have actually caused the mutation and spread of more toxic mold species. He refers in one chapter to these resistant molds growing rampant on the drywall.

I hope, but doubt, the state will look at the big picture and reinforce the various problems with improper repairs, condensation, and so forth. Then there is the problem many people have of improper ventilation in bathrooms which become mold traps.

Shoemaker's books provide a lot of insight into what's going on with the phenomenon of toxic mold, including some speculation on why it's become so much more of a problem in recent years.

Here are several different hypotheses, including ones posed by Shoemaker:

1. Building techniques (such as the use of drywall, insulation and HVAC systems) have caused there to be greater quantities of mold growing in buildings than in the past.

2. The use of chemicals (such as mold resistant paints) have caused some toxic molds to be more able to grow than others. The toxic molds that are able to grow in those conditions may (for whatever reason) create toxins that are more damaging to us than other molds.

3. One or more chemicals may have mutated toxic mold, causing it to create toxins that we are not genetically adapted to resist. Benomyl, a "systemic fungicide" developed by DuPont in the late 1960s, is a prime suspect of his.

4. Our "background levels" of toxins in general (e.g. from other chemicals) is greater now than in the past, and the "toxic terrain" of our bodies may make us more susceptible to mold toxins.

5. Some sort of new pathogen (such as XMRV or Lyme) may cause some people to be more susceptible to toxic mold, or to be vulnerable to tiny amounts of it.

6. EMF's may cause mold to grow more easily or to create more potent toxins.

Note that when Shoemaker says "mold," he's using it as shorthand for biotoxins of all sorts. For instance, toxin-producing bacteria in buildings can be just as dangerous as even the worst molds, and can work in combination with molds to create particularly bad effects, he says.

I tend to think that more than one of the factors above may be responsible for the increases in mold illness. I will be interested to see whether that turns out to be the case.

Best, Lisa
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
hi Slaydragon,
I had a mold inspector out to my house the other day (after friends were complaining my house smelt like mold and one who stayed the night ended up sick). He's going to ring the government housing people who i rent this house from and try to get them to fix it and said to me that he's sure the degree my house had/has would of affected my health. He also said he'd phone my doctors to get them to get me tested for mold (something about spores can go into the blood). Do you know of this mold blood test?

He said it needs to be treated by using ozone which kills the mold.. then mold removal (he said mold removal without killing it first is no good)... followed up by something that is sprayed about the place to coat walls etc.

The mold I have here is apparently black mold (I'd previously thought we didnt have dangerous molds in Australia) and the inspector said the one in her the worst kind of mold in regards to causing health issues.
...........

If anyone here is in Sth Australia is wanting a free mold inspection of a house which they think has issues... you can phone a company called PureProtect (Peter Norris 0420 756 214). This guy even came out to my country area free of change to do the inspection :) . (and wasnt pushy about anything but is just going to get onto those i rent from).


Tania, I put some comments about your situation on this thread a couple of days ago.

http://forums.aboutmecfs.org/entry.php?789-Mold-Specialist-inspected-my-house

The following is from earlier in this thread, on laboratory tests that attempt to determine whether people are suffering from mold illness. I get asked about this topic often enough that it seems worth repeating.

Thanks very much for your suggestion of the mold company. I will keep that in my files in the event that anyone in Australis asks for suggestions.

Good luck to you!

Best, Lisa

*

Here is some information about various kinds of tests related to whether individuals are being affected by mold illness.

1. One kind of test panel is the one that Dr. Shoemaker has developed. It includes a number of measurements related to inflammation and immune responses. This includes measurements of various cytokines (such as MMP-9 and TNF), since that kind of inflammation seems to be related to toxic mold illness. It also includes measurements of various hormones (such as MSH, cortisol, leptin and ACTH), since those are thought to be affected by the presence of the inflammation and other negative effects brought about by toxic mold. Measurements of complement elevations (C3a and C4a) also are included, since those are thought to be related to current acute toxic mold exposures. VEGF, which is a chemical signal directing growth of new blood vessels, is also part of the panel. The HLA-DR genetic testing, which Dr. Shoemaker says that he has observed to be strongly correlated with toxic mold illness, also is included on the panel.

These tests still are unfamiliar to many practitioners, but seem to be gaining acceptance. To my knowledge, Dr. Shoemaker has not published any papers verifying their reliability or usefulness. They are described in detail in Dr. Shoemaker's book "Mold Warriors" and on his website at www.biotoxins.info.

2. Also on his website, Dr. Shoemaker makes available a test that he calls variously the VCS (visual contrast sensitivity) and the BIRS (biotoxin illness risk score). This is an eye test of visual contrast, which he states is a good detector of the presence of neurotoxins of whatever sort (not just biotoxins) in the brain. It can be completed online and serves as an initial screening device.

My own personal experience and observations suggest that this is a useful screening device, but that it doesn't necessarily do a good job in ruling out mold illness in CFS sufferers. When I was living in my moldy house, I indeed did terribly on the VCS. At that point, my vision has declined to the point that everything looked dim and I could barely see anything to read inside. This was scary!

During the couple of months after I moved out of my moldy house, my vision improved to the point where I could pass the VCS. I felt a bit better, but was not even close to being well. It only was after I visited Erik for a week and got really clear (and then started this ridiculous "extreme mold avoidance" thing) that my health really recovered.

Most of the time now, I can pass the VCS. Sometimes, especially after I've had a good bit of mold exposure, I fail it.

Dr. Shoemaker says although people who aren't suffering from biotoxin illnesses (which also can include things like chronic Lyme, dinoflagelites and brown recluse spider bites) shouldn't fail the test, those people who are having problems sometimes can pass it.

The idea that I can pass the test even though I'm being affected by small amounts of mold toxin is consistent with one hypothesis about the role that toxic mold plays in this illness. Certainly, significant amounts of the neurotoxin itself (enough to affect the vision) can be present in CFSers who are suffering from mold illness. However, a hyperreactivity of the complement component (C3a and C4a) seems to be a more fundamental part of the problem, just as it is in people who suffer from peanut "allergies." This is more related to what the body does to itself when it senses the mold toxin than to the direct effects of the toxin. Why the body is going nuts when it senses tiny bits of this stuff is, in my mind, a key question that we need to answer about the disease.

Interestingly, the C4a responses has been mentioned in other research related to CFS. I'm going to post an abstract related to that topic below.

I certainly think that it's a good idea for CFSers to take the VCS. On its own or in combination with the ERMI, it can provide substantial information on whether people are living or working in really moldy buildings.

That's important to know, so that the problem can be addressed if so. No one should be living in a sick building. That's especially the case for anyone with an illness that affects the immune system, regardless of whether we think that mold might be a "cause" of that illness.

However, passing the VCS should not be taken to provide conclusive evidence that mold toxicity is not a factor in an individual's illness. It is only a first step.

3. Another kind of test is an allergy test panel. Here we are talking about allergic reactions to toxins, not to their poisonous effects. Still, I have heard of people using them for cases of mold toxicity illness, so I will discuss them.

One measure is the IgE tests to different species of mold. These measure allergic reactions, which result in symptoms such as watery eyes, runny nose and asthma.

This is not useful for the purpose of measuring mold toxicity, because this is not an allergy. In my case, even though I appear to be suffering from the negative effects of toxic mold, I do not have any allergic symptoms of mold at all.

A second component of this test is the IgG. This apparently measures the extent to which people have been recently exposed to various species of mold.

As it was explained to me, the rationale for the use of this test is to try to determine the extent to which various molds are present in the person's usual environment. If the IgG to Stachybotrys comes up high, it is thought to mean that the person's home (or other area where s/he spends time) has a Stachybotrys problem.

This does not mean that the person is being affected by the particular mold, though. Some people appear to be able to get a very large amount of exposure to these molds and not suffer from any apparent ill effects at all.

Having a low IgG does not mean that the person is not being affected either. Again, it is our contention that for some of us, even small amounts of exposure (apparently triggering complement to go ballistic) are enough to keep us sick.

The potential usefulness of the IgG is to serve as an environmental test, since the tests that remediators use (air tests, ERMI, tape lists) are so unreliable. I don't have enough data on the accuracy of the IgG for this purpose to say whether it actually provides good information.

4. Another type of test is the one that Gerwyn mentions in this thread (May 5, currently post #99). This is a test that shows whether various molds, including toxic species such as Aspergillus, have colonized the body. In this case, the molds are serving as pathogens (like a bacteria would). Insofar as the molds continue to produce toxins while living in the body, this would be contributing to any toxicity problem present.

It's my impression that this sort of test is reliable. However, the colonization of individuals' systems with these pathogens is only one part of the problem. We also are affected by the toxins that we take in just by breathing them in. One toxicologist (Dr. Jack Thrasher) told me recently that these toxins appear to have the ability to go straight up the olfactory nerve and into the brain, totally bypassing the lungs or bloodstream.

Stachybotrys, which is possibly the most problematic toxic mold for CFS sufferers, very rarely can get any sort of a foothold in the body. Aspergillus does so more frequently, especially in people who are already immune compromised. It tends to cause sinus infections and lung problems. These types of problems often are attributed in CFS sufferers to infections with candida, bacteria (such as chlamydia pnemoniae) or mycoplasma. Considering the idea that they might be related to Aspergillosis or other mold colonization, especially if mold in the home is suspected, may be warranted.

I actually had a lung problem, with mild-ish pneumonia-like coughing, during the couple of months before I found out about the mold in my house. It went away within a couple of weeks after I moved out. One hypothesis is that immune defects resulting from mold toxicity make Aspergillosis more likely to occur. Of course, other immune problems from CFS also could contribute to its presence.

5. There also is a panel of tests that measure the presence of various chemicals, including various mycotoxins, in the bloodstream. These tests are used frequently by various environmental specialists, such as Dr. William Rea.

This kind of test was originally designed to assess the presence of manmade chemicals, as might occur from industrial exposures to solvents or pesticides. They then were extended to measure mycotoxins.

One issue here is that toxic molds make a whole variety of chemicals. We don't have enough knowledge yet to be able to say for sure which ones are particularly bad.

Another issue is that the body tends to sequester mold toxins and other chemicals in the fat cells rather than in the bloodstream. The amounts in the blood thus may be misleading.

I don't have enough information about these tests to gauge their accuracy. From what I've heard, people who have environmental exposures to most chemicals tend to see their blood levels gradually go down if they get away from the environmental exposures and engage in active detox. The levels of the mycotoxins seem more likely to stay stubbornly elevated.

Everything I run into suggests that there's something weird going on with the mold compared to all other substances. I wish I understood better what it is.

6. The test that Dr. Myhill suggests ("you'll have to go on holiday") and that Erik has long advocated ("the Godforsaken wilderness" sabbatical) discussed above are designed to help individuals determine how much of an impact small amounts of toxic mold are having on them.

The test needs to be done carefully in order to yield a useful result though. Because CFSers are affected by such small amounts of mold, staying in a bad building, a bad region or amidst bad belongings (or other objects) can make it seem that toxic mold is not a problem even when it actually is.

If the test is done right though, it provides much more convincing results than any of the lab tests. Only two weeks after moving out of my moldy house and four days after putting aside my belongings from the house, I found that I couldn't go back into close proximity with those items without feeling ill. Washed clothing made my heart beat fast. Putting my hand inside my purse caused a painful burn that lasted for a week. Putting on my heavy coat made me have to stop by the side of the road to repeatedly vomit.

This is what Dr. Rea calls "unmasking." Interestingly, CFSers talk about it with regard to food allergens all the time---e.g. needing to stop eating wheat in order to figure out that small amounts of it cause a problem. Considering that toxic mold is inherently a "worse" substance for people than is "wheat" (consumed by the majority of the population with only positive results), the idea that the former may be causing problems that are at least as bad as the latter at low levels does not seem that unfathomable of a concept. Just an unfamiliar one.

In general, practitioners seem to be moving more toward using Dr. Shoemaker's panel of tests (including the VCS) to assess mold illness. For CFSers, the "Godforsaken wilderness" one (perhaps in combination with Dr. Shoemaker's panel) seems to work best. The others seem to be more useful for particular situations rather than for the diagnosis and monitoring of mold illness in general.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Not sure where to post this...

...but was wondering if some of you mold and/or environmental experts have heard of this Aranizer air purifier?

The claims sound too good to be true...

"The Aranizer produces rare molecules that contain four or more atoms of Oxygen. These molecules, known as Aran, circulate through your house, bind with and destroy smoke, chemicals, allergens, bacteria, molds, fungus, and viruses. The Aranizer simply accelerates the process Nature uses to break down air pollutants, chemicals and toxic environments, leaving the air smelling fresh and clean without using chemical fragrances or costly filters."

!!! ???

ARAN(TM) is a powerful, natural oxidizer, which renders toxic or potentially toxic substances inert and harmless. ARAN(TM) quickly and easily cleans the air of countless undesirable and potentially toxic substance including:

Acetaldehydes & Alcohols

Acetic Acids & Amines

Anisoles & Aromatics

Acids: Formic, Benzoic, Humic

Chlorinated Compounds:

a) butanes

b) ethanes

c) pentanes

d) polyaromatics

e) propane

Carbon Monoxide

Chelating Compounds

Chloro-aromatics

Cyanides

Dichlorides

Ethylene Detergents

Ethylene Gas

Formaldehyde

Glycerols

Glycine

Glycols

Haloaryl Ethers

Halogenated Methane

Hydroquinones

Kepones

Methylene Chloride

Methane Gas

Nitro Compounds:

a) aromatics

b) phenols

c) samines

Organic Compounds:

a) phosphates

b) sulphurs

c) tins

Pentachlorophenol

Pesticides

Phenols

Phthalate Esters

Polychlorinated biphenyls

RDX

Sodium Acetate

Styrene

Sugar compounds

TNT

Vinyl Chlorides

And more...

http://www.healthiswealthmaui.com/AranizerRemediator3.html


Sounds crazy to me, but perhaps those of you with working brains would care to comment?

Thanks in advance,

Dan
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
slayadragon.. thank you a lot for your post. Unfortunately Im too sick right now to get throu it all (I managed about one fivth of it :( ... too sick to be online much at all past couple of days).

I have had a couple of those tests done.. The vision contrast test of -shoemakers? - I did that many years ago.. and yeah it is a great test. For myself, it showed I have issues coming up postive in both questionaire and also postive for neurotoxins on the actual eye contrast test itself. (I put the positive result down to very possible heavy metal contamination due to my history)

Due to my CFS specialists personal studies (he was looking at HLA haplotypes in CFS), Ive also have had HLA-DR genetic testing done. My HLA haploypes include DRB1*0401*0801 and DQB1 *0302 and *0402 ... If Ive worked things out correctly from that.. that is DR4, DR8, DR4, DR8 (http://en.wikipedia.org/wiki/HLA-DR)

Could you please direct me to exactly where it tells one what HLA-DR types have issues with mold. thanks
......

Im try to read your post and post more when Im a bit weller.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
...but was wondering if some of you mold and/or environmental experts have heard of this Aranizer air purifier?

The claims sound too good to be true...

"The Aranizer™ produces rare molecules that contain four or more atoms of Oxygen. These molecules, known as Aran™, circulate through your house, bind with and destroy smoke, chemicals, allergens, bacteria, molds, fungus, and viruses. The Aranizer™ simply accelerates the process Nature uses to break down air pollutants, chemicals and toxic environments, leaving the air smelling fresh and clean without using chemical fragrances or costly filters."

Hi Dan--

I have owned an Aranizer for about 15 years and couldn't live without it. It does an amazing job to help fresh paint and chemicals offgas. If I buy anything new, I stick it in the garage with my Aranizer on full blast next to it--for a day or more, and let it do its thing. It has not disappointed me with breaking down and eliminating chemical smells and low level mold.

For MAJOR mold, I haven't found it as effective. In that case, the moldy wood or sheetrock needs to be removed by experts and replaced. VERY COSTLY, but it's the only way to get it out.

I hope that's helpful.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
Could someone out there please tell me how to go about avoiding or getting rid of mould in the house?
Thank you.

Erik Johnson is a member of the original Incline Village cohort of patients from the mid 1980s, which the CDC used as the basis for the category of CFS. This is the group that was used in the WPI's 2009 XMRV paper in "Science."

Erik's been talking about mold as a factor in his illness since the moment he walked into Paul Cheney's office in 1984. He's spent the subsequent 26 years studying it and attempting to make people in this community aware of its role in this disease.

As a result of his own mold avoidance activities, he has been well since 1998 and climbed Mt. Whitney each August for 10 years in a row. A number of other people have gotten much better or achieved wellness as a result of following his approach. He is profiled at length in Ritchie Shoemaker's "Mold Warriors" and "Surviving Mold."

Insofar as people want suggestions on how to go about approaching this, I suggest following his instructions.

I have put together a collection of his writings that give explicit details on how to go about this. If people would like a copy, please let me know and I will e-mail it to you.

Best, Lisa

slayadragon at yahoo
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
slayadragon.. thank you a lot for your post. Unfortunately Im too sick right now to get throu it all (I managed about one fivth of it :( ... too sick to be online much at all past couple of days).

I have had a couple of those tests done.. The vision contrast test of -shoemakers? - I did that many years ago.. and yeah it is a great test. For myself, it showed I have issues coming up postive in both questionaire and also postive for neurotoxins on the actual eye contrast test itself. (I put the positive result down to very possible heavy metal contamination due to my history)

Due to my CFS specialists personal studies (he was looking at HLA haplotypes in CFS), Ive also have had HLA-DR genetic testing done. My HLA haploypes include DRB1*0401*0801 and DQB1 *0302 and *0402 ... If Ive worked things out correctly from that.. that is DR4, DR8, DR4, DR8 (http://en.wikipedia.org/wiki/HLA-DR)

Could you please direct me to exactly where it tells one what HLA-DR types have issues with mold. thanks
......

Im try to read your post and post more when Im a bit weller.

https://www.survivingmold.com/diagnosis/lab-tests

Your info isn't quite complete, since you've left out the DRB3/4/5 numbers.

However, based on what you've written here, it looks to me like your genotypes are:

4 3 (53) - Multisusceptible
8 4 - No recognized significance

Perhaps someone else will take a look and give their thoughts.

Best, Lisa
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Hi Dan--

I have owned an Aranizer for about 15 years and couldn't live without it. It does an amazing job to help fresh paint and chemicals offgas. If I buy anything new, I stick it in the garage with my Aranizer on full blast next to it--for a day or more, and let it do its thing. It has not disappointed me with breaking down and eliminating chemical smells and low level mold.

For MAJOR mold, I haven't found it as effective. In that case, the moldy wood or sheetrock needs to be removed by experts and replaced. VERY COSTLY, but it's the only way to get it out.

I hope that's helpful.

Thanks DB! A couple more questions for clarification:

So...do you use it just to help speed up the clearing of outgassed chemicals and mold in a separate room, or do you also use it as an air purifier, i.e., do you leave it on in other rooms to keep the air 'clean'?

The reason I ask is because it seems to be similar to ozone-type machines, which some sites say are great, while others say they're harmful (plus leave a mess because they cause the 'dirt' in the air to drop to the floor, furniture, etc.?) ...and my melting brain just can't figure it out. :eek:

So it's nice to hear it basically (almost) does what it says, but as always, Uncle Dan has more questions. :)

thanks,

d.