Biotoxin/Mold Illness

[slayadragon]

I think what we have to keep in mind is that this is a wholly new paradigm, not just for ME/CFS but for illness in general. The ideas that toxins may make us more susceptible to pathogens, and that pathogens make us more reactive to toxins, and that tiny amounts of toxins can have this much of an effect, are ones that medical science as a whole has not picked up on at all. And yet, a number of respected scientists (not necessarily medical researchers) who have listened to the concept seem to find it intriguing and plausible.....even though it's coming from people without specific medical training.

Considering how new this paradigm is, nobody should take anything that anybody's saying as gospel. On the other hand, considering that everything so far is "anecdotal," there's remarkable consistency in terms of results. But it has to be done precisely as Erik says, from what I've seen. Half measures (e.g. keeping even a few possessions, never getting really clear, ignoring the concept that outdoor biotoxins are at least as much deal killers as indoor biotoxins, not learning to decontaminate) leads to half results at most.

Which is not to say that half results aren't better than ones from just about any other treatment out there, maybe.

One thing that's difficult is to predict where either the inside biotoxins or the outside biotoxins are going to be the worst. Erik said several times that Las Vegas was mold hell, but I found an excellent area there (the northwest Summerlin section) where I did well for large amounts of time.

I've spent the past two years visiting a whole lot of different places, in at least small part because I thought it might be useful to people to have some choices of places that (at least for some of us) might be especially good. I'd rather people who are starting out with this go somewhere that I know is good (at least in terms of biotoxins....I can't judge things like allergens or other toxins, and haven't focused on temperature and altitude or pathogens) rather than somewhere that's questionable, all things being equal. But that doesn't mean that there aren't places that I haven't been that are good as well.

We all have to take responsibility for what we're doing. If there's one thing that we should have learned from having this disease, it's that nobody's going to take care of our health but us.

This is by far the hardest thing I've ever done. I have no idea how I got this far. It was an act of utter desperation -- and an experimental trip down the rabbit hole -- rather than the sense that what I was doing might be copied by anyone else. During all the time that I was doing that heavy detox, I was just thinking that what I learned would be of value in terms of developing new knowledge about the disease that might be helpful in developing non-avoidance treatments.

The idea that anyone wants to follow in my footsteps is utterly amazing to me. Hopefully what I've learned will make it easier for them than I had it, but I certainly can't promise that.

Best, Lisa

*

I don't think anyone can guarantee results on something that is so dependent upon constant vigilance and self determination any more than I could send a hang gliding novice off a mountain and guarantee that they would find thermals, work them effectively... and "sky out.”

Occasionally some students acted as if it were the instructor’s failure if they didn't get a good flight, but the visible evidence of other pilots who were having a good time served as a demonstration that it wasn't the system which was lacking.

Based on what I've seen, I can almost guarantee that anyone who demands a guarantee is precisely the kind of person who won't make it.

-Erik (2008)

 

[Dreambirdie]

Hi DB, that's the point. My heirarchy of toxins is different than yours, or anybody's.

Yes, exactly. I see this ALL THE TIME with people who have MCS. There are such varying degrees of reactions to the wide assortment of toxins that we are exposed to. Some people can't tolerate wood smoke at all, others (like me) have a hellish time with synthetic fragrances. Some have severe pollen allergies, in addition to MCS, and some have NO pollen allergies at all. Some do okay in the redwoods and can't stand the beach because of the often sulphur-ish smell of rotting kelp, others (like me) thrive at the beach, and do poorly in the moldy forested areas. I have one friend who can work on his car, but has really bad food allergies and can only eat ten foods.

AT one point I tried to put together a small MCS support group and it was impossible. My house that I live in now is really pretty healthy, and of course will be ever better when the mold remediation project in my office is all done. Most MCS folks do well here, but there have been a few who haven't: one was sensitive to the wool rug in my livingroom, another couldn't handle the new odor of a refrigerator I had just bought, another felt ill from the ozone smell put out by my air filter. So there went that idea!

I do best when I spend a lot of time outside at the beach, but even after 4 hours I still have some symptoms that are noticeable. My biggest issue right now is my TEETH, and until I take care of that other layers of my illness can't be effectively dealt with. Chronic infections definitely need to be included in the topic of toxins--my abscessed tooth made me feel as ill as any pesticide exposure. Getting it out made a difference, but there are still more tooth issues to resolve... argggh can't wait to pay those bills!

On a final note, I just want to say that I hope that this thread inspires others to look more carefully at ALL ASPECTS of their illness. There are SO many things that impact our health. And I agree that WE ARE ALL INDIVIDUAL as to what the causes and effects, and answers, for each of us are.

I wish us all success on the journey and appreciate the "postcards from the edge." Ciao for now. ~~ DB

 

[Dreambirdie]

I personally would never argue that having a pristine diet and surroundings is not important: I will probably eat like this for the rest of my life, and I'm in no rush to live under a radio tower either, but I would argue that the premise of this thread assumes (for the sake of conversation) that biotoxins play a stronger role than these other stressors. The questions we might be trying to answer are: is it causative? is it part of the causative set? is it predisposing to the causative agent/set? and perhaps more importantly than all those questions: can lessening reactivity and increasing sensitivity to it (using whatever measures, of which the most effective seems to be extreme avoidance and decontamination) lead to symptom resolution?

Hi Mojoey---

I understand your desire to want to zero in exclusively on biotoxins, and the questions that come up regarding the understanding of their cause and effect and subtraction to==symptom reduction. But I don't think the issue of extreme mold avoidance can be reduced to a topic just on itself alone.... which is the point jenbooks and I are trying to make.

As soon as you (or anyone other seriously ill PWCs) bail out of your moldy house, on a adventure to find an environment that will have LESS mold/biotoxin, you will be treading into the wide world of assorted OTHER multi-toxins along the way, some of which may be even more challenging to deal with than the mold/biotoxins. You will be dealing not only with your mold avoidance, but also with multi chemical avoidance, and the issue of where do I get water I can drink and food that I can actually eat in this godforsaken wherever-the-hell-it-is... It will become part of the agenda. You will have to eat, right? and drink water? and maybe take a shower somewhere? and travel through agricultural areas that are sprayed with pesticide? and past factories that spew assorted poisons into the air? and stand in line at the store next to people drenched in fragranced laundry soap, shampoo, cosmetics and cologne?

So try as you may, taking the journey of avoiding mold will not eliminate ALL the other things you may not be so successful at avoiding... And unless you have absolutely NO sensitivities to chemicals and pesticide and fragrances and car exhaust and cigarette smoke, and the ongoing long list of other poisons... and unless you know exactly where to go already to find the pristine mold/biotoxin free locale that you think will be your place of symptom resolution, you are gonna face and deal with ALL OF THE ABOVE.

JUST SAYIN'... that has to be considered as a reality check for all who are going to take the mold avoidance journey. Mold avoidance will absolutely and unavoidedly include all of the above. That's why it needs to be included in the discussion, that's why we are addressing it.

 

[slayadragon]

That was a terrific article you found, Jen. Thanks much for that.

I'm going to ask some people (Rich van K, Erik, Gerwyn, Keith Berndston, etc.) to take a look at it and see if they have thoughts.

In the event that anyone here wants to read it, I put a copy on this board. I think people have to have posted some specific number of times in order to download articles from their research repository, so if anyone can't do it, let me know and i'll send a copy.

http://www.mecfsforums.com/index.php/topic,3712.msg38914.html#new

As a first pass, here are some comments and findings from the article and some comments.

* Up to 15% of the U.S. population has MCS (from another study).
* The "Yasko" type genetics did not different between MCS and controls.
* Various enzymes related to redox (glutathione s-transferase, catalase) were lower in MCS than controls.
* Glutathione perxoidase was greater in MCS than controls.
* Reduced and oxidized glutathione was lower in MCS than controls.
* Nitric Oxide was more elevated in MCS than controls.
* MCS had lower fatty acids (e.g. Omega 6, ALA) than controls.
* Interferon gamma, IL-10, IL-8, MCP-1, VEGF and PDGF were elevated in MCS.
* They point out that low glutathione, low catalase and low glutathione s-transferase would lead to oxidative stress and lipid peroxidation.
* They point out that the fatty acid problems described would lead to lipid mediators of inflammation, including prostaglandins and leukotrienes.

Here's another paragraph that might be relevant with regard to our immune system issues:

> High levels of IFNgamma suggest the prevalence of activated Th1 lymphocytes in the blood of MCS patients, whereas up-regulated IL-10 could represent the persistent effort of regulatory T (Treg) cell populations to counteract Th1 activation. Differentiation of T helper cells in the direction of Th1 and Treg subpopulations is characteristic for autoimmune response (Wilson et al., 2009). Importantly, IFNgamma is a strong primary inducer of the expression and release of chemokines and growth factors, including IL-8, MCP-1, PDGF and VEGF, but in turn IFNgamma expression can be boosted by these secondary mediators (Basu et al., 2010). Highly increased levels of IFNgamma in patients diagnosed with MCS provide a promising link between impairment of immune and chemical defensive systems in such patients.

*

The mention of prostaglandins made my ears perk up, because of a recent thread that Sergio started here:

http://www.forums.aboutmecfs.org/sh...epressants-better-than-ARVs-for-XMRV-amp-more

This discussion suggests that addressing elevated prostaglandins (such as prostaglandin E2) might be helpful in controlling XMRV. Insofar as whatever’s going on with MCS is responsible for raising such prostaglandins, we’ve got another potential mechanism to link our toxicity phenomena with the flourishing of the virus.

Biotoxins are not brought up in this study. Here is my attempt to link them in.

It is interesting to note that the genetics related to what Rich calls the “main” (non-immune) detox system did not distinguish between MCS and controls. That doesn’t really surprise me, since the genetics that I’ve seen from ME/CFS patients are all over the board. (I’m not sure that either Amy Yasko or Rich thinks that these polymorphisms cause this disease either. Yasko seems to more use them to decide which of a variety of different supplements might be most helpful.)

So the question here is: if the genetics studied here don’t distinguish the groups, what is it that does?

Some possibilities:

1. Genetics not tested might be different in MCS vs. controls.
2. Exposure to various (or specific) toxins might be different in MCS vs. controls.
3. Other factors (such as presence of specific pathogens or poor diet) may be different in MCS vs. controls.

Regarding 1) -- I wonder about those Shoemaker genotypes. From what I’ve seen, those seem to be fairly correlated with ME/CFS. (I’ve not seen many panels of people with MCS but not ME/CFS, so I can’t say what those might look like.)

Rich and I have talked a lot about the fact that for some people, an extended period of extreme avoidance leads to the disappearance of MCS problems. One thing we know for sure is that satratoxin (the toxin made by Stachybotrys) does a really good job at decreasing the amount of glutathione present. Satratoxin also does a bang-up job of puncturing holes in the blood-brain barrier so that lots of bad stuff can get in. (As a side note, other trichothecenes puncture holes in the intestines, causing leaky gut. I’ve not seen Stachy studies on this, but I suspect it does the same thing.)

Conceivably, then, the low glutathione in these patients might be due to greater-than-average satratoxin exposure and/or the inability to process the satratoxin out of the system. Insufficient intake of fruits and vegetables (perhaps especially raw ones) also could be related to the problem, since this is where we’re supposed to get our glutathione.

(Not that IV’s aren’t nice too.)

One thing that I keep trying to focus on is how mold (and particular trichothecenes) is different than other toxins. (Since I don’t know what the “?” is, I’m focusing on Stachy for now.)

I imagine that more toxic exposure of any sort would lead to some of these things being messed up.

In particular, William Rea talks about different P450 enzymes being responsible for detoxifying different substances. If you get too much exposure to any one thing, the whole house of cards starts to collapse.


However, I’ve yet to see anything that does as good of a job of poking holes in the BBB as satratoxin. I have to believe that’s a huge component of our phenomenon. The glutathione destruction (which is central) seems really important too.


The other thing is that I’ve yet to see any evidence that people with MCS tend to be especially likely to work with industrial chemicals or to have any other specific exposures. Certainly, some people are triggered by a big exposure. Rea sees some people who clearly have been poisoned in this way. Some of the most sick ME/CFS that I’ve seen have this in their past -- e.g. living next to a toxic waste dump where others got sick.

But in a lot of cases, people with MCS seem to have no extraordinary histories whatsoever. Certainly they’re exposed to toxins, but apparently not more than other people. Certainly their diets may not be pristine (either before or after illness), but apparently not more than other people’s. And other factors (e.g. stress) don’t seem really that different either.

So I think that considering the role of Stachy here may be useful. Stachy does specific things that are associated with MCS; it’s a toxin that some people get a lot more exposure to than others (depending on if they’re unlucky enough to be living in a moldy house); and the idea that the HLA DR genetics may be relevant has not yet been explored.

Since we don’t know what the “?” is, I can’t use studies to tie that in with this MCS paper. But I do have one comment.

From time to time, I have heard reports that MCS is more of a problem in California than in much of the rest of the U.S. That seems to be the case with ME/CFS (especially the severe form) as well.

I’ve not found studies on this topic, unfortunately. The “Locations Effect” tends to be ignored in disease in general.

However, if it is indeed the case that MCS is a lot worse in California than in many places, then I’d like to suggest that the “?” might be related to that phenomena. The observations of some of us pursuing avoidance is that this substance is particularly problematic in much of that state.

On another note, I’m not yet sure what to say about that paragraph about immune system dysregulations in the MCS population, especially insofar as it is related to immune system problems in ME/CFS. Does anyone have any thoughts?

One thing I wonder if whether XMRV might be further tied into this phenomenon. That needs to come from someone besides me though.

Thanks again for pointing out the paper.

Best, Lisa

 

[floydguy]

Also Joey, what is your diet really like? A truly healthy diet shoudl be 60-70% raw, all organic or wild or at least locally farmed, your meat should be from Amish or Weston PRice farmers, organic meat chicken and eggs are NOT HEALTHY SORRY, they are crap, they are fed the wrong diets, so what if it's "organic", your dairy should be raw or don't use dairy and also from Weston Price or Amish farmers, you shouldn't have any grains if you have the kind of gut problems you've discussed, your fish should be wild and fresh, you should make raw nut milks from raw nuts, green juices a few times a week or green smoothies--all from the highest quality foods you can find, NOT wholefoods. You shoudl make bone broths from Amish or Weston Price farmer bones--and eat dulse and other seaweeds regularly. To really eat a superbly healthy diet requires a lot of effort initially, though once you get into the rhythm and find the sources, it's not as hard.

I wonder how healthy your diet really is. Not insulting you but almost nobody I know has a really healthy diet. Including me. I had a healthier one in NY, its hard as DB says to have while travelling. I try to get good fermented raw foods at the good health foods stores but I eat them quickly. Nobody has an Omega Juicer at helath food stores--the quality of fresh juices there are crappy.

That sounds as extreme as living in a tent in the desert.

 

[slayadragon]

My repeated observation is that if people get clear of biotoxins (even if they're just in a good house in a place with reasonable air), pretty much anything that they do starts to have a positive effect.

This includes such things as detoxification (Yasko, Rich van K, cholestyramine, other stuff), antibiotics, antivirals, herbs, neural therapy, parasite cleanses, massage, yoga, probiotics etc. etc. etc.

All this stuff SHOULD help us, by all rights. The problem, I believe, is that the toxicity/inflammation from the biotoxins keeps it from doing so.

I imagine this applies for the raw food/bone broth stuff as well. Insofar as I can do this myself (it's true that it's hard to get some of this stuff outside major metropolitan areas -- Catch-22!), I'm really thinking I'm going to give it a try.

But I have to think it's as a way to help what I'm doing work better rather than a replacement for it.

Best, Lisa

 

[floydguy]

Definitely bring your vitamix to the tent! LOL.

Seriously though you can do all that stuff outside of Union Square? I am happy to find a Whole Foods, never mind anything else. Most normal grocery stores are just awful these days and outside of New England/Northeast I haven't found much in the way of good local organic farms - though I am sure they exist. I really wish I could eat better more easily...

 

[Wayne]

The problem, I believe, is that the toxicity/inflammation from the biotoxins keeps it from doing so.

Hi Lisa, Hi All,

I just listened to an audiofile last night on "earthing". A lot of emphasis was put on how earthing can dramatically reduce inflammation in a short period of time, and why. Here's the link in case you might be interested. For some reason, it's only going to be available until about mid-day tomorrow. Once you get to the site, scroll about half way down.

CLINT OBER & STEPHEN SINATRA, MD

EARTHING: The Most Important Health Discovery Ever?​

 

[Wayne]

I don't wish to dictate or disturb the intended spirit of this thread, even more so because I wasn't the one that started it and a bit rudely entered the fray posting about my decision to pursue this. [/URL]

Joey, I thought your contributions here were great. And as always, you've been the consummate gentleman. No need to be concerned about creating any kind of disturbance, not from me anyway. You get a from me. :Retro smile:

Wayne

 

[slayadragon]

A comment for Floyd:

I don't know if you recall, but a while back some of us were talking about the ground regulation system, which is related to the fascia.

Apparently a big problem with regard to the fascia getting gummed up (changing from a sol/gel to something more like styrofoam) is that gliotoxin substitutes for glutathione.

Gliotoxin is made by candida and aspergillus. Glutathione is what we're supposed to get in fruits and vegetables (and then utilize with methylation). I wonder if the poison made by Stachy might do the same sort of thing as the gliotoxin.

A problem with ME/CFS is that most of us have all those things going on (at least in some cases, caused or exacerbated by satratoxin exposure). We don't eat enough produce because we're too sick to prepare it, the satratoxin destroys the glutathione that is present, methylation shut down means that we can't use whatever's left, candida and mold exposure present plentiful amounts of gliotoxin.

Then when the fascia gets gummed up, toxins and pathogen remains cannot be removed from the body (since the lymph system gets blocked). Things get backed up. Pain sets in.

At that point, just doing what we should have done to begin with (eating produce, being in a good environment) may not be enough to bring us to good health. Doing things that are above and beyond (fascial massage, neural therapy, particular probiotics) may be needed to bring things back around.

But doing the things that we should have done to begin with may be helpful at that point. It seems to me like diet, addressing candida (and other gut issues) and being in a good environment may be amongst the top three things.

Best, Lisa

 

[*GG*]

Why did this phallic looking shrub make the news?

GG

PS Thanks for the pic, made me laugh inside!

 

[soulfeast]

There may be validity to this. If you are continually being "hit" by biotoxin exposures and your biotoxin pathway is already primed and possibly VIP and MSH being low are signs of progression of damage or however you want to phrase that, then that is like being gluten intolerant and continuing to eat gluten. Shoemaker says this.. he measures the biotoxin pathyway and sure enough it reacts when re esposed. If you are continually re exposed it becomes not only exposure but an assault I would imagine on your nervouse system, adrenals, etc.

Im out of my stachy house and possibly in a place where house may be ok but outside air is questionable. We shall see. I am monitoring air, weather condition and exposures to symptoms to see if tehre is a pattern. I can attest that I keep getting "hit" with something, internally or externally that has my ANS all upset. New house chemicals are adding to that as well as most likely detox.

I like this idea: The interesting thing is that Stormy managed to get the best of both worlds, She got well using moderate approaches to diet and health, with balance and intelligent choices.

For me at this point, an intelligent and balanced choice is to avoid buildings that I know are water damaged and when I encounter one, to wash clothes and take a shower. Thats no more OCD than the SCD diet for sure. Esp if it becomes a common sense way of life.

Also for me common sense would be to see if I feel better as I move away from my currrent location.. which is across from a lake where it adjoins to a river. I am not trusting my experiences too much right now because I am going through the craziness of unmasking and everything bothers me that has a smell or "difference" a out it.. but I am suspecting that when I travel toward the city, I feel better.. when I come back toward my home, I feel a different feeling.

I think the godforsaken desert concept would be interesting to pursue if you can (which I cannot) to see if being able to be in a place where exposures are limited will help calm the system down enough that it can start to heal. Better for me with a family in tow would be to find my Witchita.

I know what it feels like to be exposed now that I am unmasking and it is a form of torture on the body at times if this is what is going on. I have not been this ANS sensitive ever. Unmasking to chemicals.. smelling "mold" on food..

At the moment, I'm at Stormy's house near Wichita.

She got well from severe ME/CFS by living in a house in a place with good outside air, after having gotten sick in a bad building in Iowa many years ago and then living in a bad neighborhood in Kansas.

She spent a couple of years being careful about her diet (eating 75% raw foods and whatever she wanted for the rest). She stopped eating much sugar. She took a probiotic called ThreeLac, as well as some various herbs (pau d'arco, garlic, astralagus, elderberry, goldenseal/echinachea, adrenal support, liver support, green food supplement). She ate whey protein and almonds and apples and flax seed.

She benefited from all these things. She got better. She got well, like she'd never been sick.

Those things worked for her. I don't think it was because she was lucky, and I feel sure that it wasn't because she didn't have the same thing that I had. We all know this illness too well to not be able to pick out a fellow sufferer when we're face to face.

I think she got well because she was in a good place. Whether she'd ever have gotten as well as she did as a result of just being in this house, I don't know. But being in a good place gave the good things that she was doing a chance to work.

For me, if I'm going to do something extreme, I want it to actually accomplish the goal.

The interesting thing is that Stormy managed to get the best of both worlds. She got well using moderate approaches to diet and health, with balance and intelligent choices.

But she got extreme results in terms of getting better.

That's because she's in an extremely good place, I think.

Best, Lisa

 

[soulfeast]

I think you are right. If you go to the pdf posted in this thread which his Shoemakers latest or even the Gordon presentation here, you see where c4a, c3a, specifically measured will shoot up within hours of an exposure. Like I said being in most likely a clean ok house but going out and getting exposed (there are alot of moldy buildings here).. I dont see how the body can calm down to heal. Just my personal observations that I am still trying to sort out.

This says lyme but I think its the one:

http://www.biotoxin.info/docs/GordonMD_ILADS_Biotoxins_RS_9_5_08.pdf

It seems when you are trying to calm the body down, you do need to practice some sort of avoidance in accordance with how reactive your body is.

If you are primed for inflammation, then how can you address anything that will cause a die off, cytokine response because that just adds to the already existing inflammation and most likely triggers xmrv.

My repeated observation is that if people get clear of biotoxins (even if they're just in a good house in a place with reasonable air), pretty much anything that they do starts to have a positive effect.

This includes such things as detoxification (Yasko, Rich van K, cholestyramine, other stuff), antibiotics, antivirals, herbs, neural therapy, parasite cleanses, massage, yoga, probiotics etc. etc. etc.

All this stuff SHOULD help us, by all rights. The problem, I believe, is that the toxicity/inflammation from the biotoxins keeps it from doing so.

I imagine this applies for the raw food/bone broth stuff as well. Insofar as I can do this myself (it's true that it's hard to get some of this stuff outside major metropolitan areas -- Catch-22!), I'm really thinking I'm going to give it a try.

But I have to think it's as a way to help what I'm doing work better rather than a replacement for it.

Best, Lisa

 

[soulfeast]

I had to bail out. And I have resisted the GFD concept (and still do because I have a family and cannot ). My house was remediated from the stachy and after about 6 months and being treated for 5 weeks for a new tick bite.. Ive been on abx before so dont think that is the reason), I got better... but... i started reacting to the dust in the house like it was suicide poison. I would drop into deep dark suicidal depressions. I had mood swings in the house and sometimes so depressed (and so quickly it would come on) you could scrape me off the floor but did not compare to these with the dust after the remediation.. it was like a switch had turn on or off in my brain and one more switch and I was lost. Catatonic like state would come on as well. It was very scary.

I heard about this from Lisa and met a man in grocery store by some fluke.. he passes by why I share my concern mold might still be an issue with my neighbor who I just happned to run into. He walks up to me and tells me.. I had mold illness and am better.. we thought it was lyme. I am 90% better but I had to leave my home.

I had been begging my husband for the last two years to move out of this house that we built and loved and move to the desert. I would have deep dark depressions hit and feel like I had to go, we had to go.

I dont expect everyone will have such extreme experiences but I also wonder if when they mold growth which is an flourishing colony of not only mold, but bacterias, endotoxins, mycotoxins, VOCs, beta glucans and so on... that possibly I started to unmask in the house and it became very obvoious that I could not stay.

I would say to investigate where you are.. we had one inspector out who did an air analysis and found nothing. Severals years later another.. air fine.. but.. he had a moisture meter (infrared is better) and found the mositure in the shower knee wall.. did an internal wall air analysis.. no stachy but elevated asp/pen. Remediation.. stachy was found growing beyond the drywall which should never have been installed in a shower kneewall but had begun to take over the mold growth on the studs.. stachy does not care for studs unless the mold stew is old enough to have broken down the cellulouse in the wood so it can function there better. Other molds grow sooner and better than stachy but stachy eventually takes over if its been there long enough.

So I would not say just move.. but investigate.

Hi Mojoey---

I understand your desire to want to zero in exclusively on biotoxins, and the questions that come up regarding the understanding of their cause and effect and subtraction to==symptom reduction. But I don't think the issue of extreme mold avoidance can be reduced to a topic just on itself alone.... which is the point jenbooks and I are trying to make.

As soon as you (or anyone other seriously ill PWCs) bail out of your moldy house, on a adventure to find an environment that will have LESS mold/biotoxin, you will be treading into the wide world of assorted OTHER multi-toxins along the way, some of which may be even more challenging to deal with than the mold/biotoxins. You will be dealing not only with your mold avoidance, but also with multi chemical avoidance, and the issue of where do I get water I can drink and food that I can actually eat in this godforsaken wherever-the-hell-it-is... It will become part of the agenda. You will have to eat, right? and drink water? and maybe take a shower somewhere? and travel through agricultural areas that are sprayed with pesticide? and past factories that spew assorted poisons into the air? and stand in line at the store next to people drenched in fragranced laundry soap, shampoo, cosmetics and cologne?

So try as you may, taking the journey of avoiding mold will not eliminate ALL the other things you may not be so successful at avoiding... And unless you have absolutely NO sensitivities to chemicals and pesticide and fragrances and car exhaust and cigarette smoke, and the ongoing long list of other poisons... and unless you know exactly where to go already to find the pristine mold/biotoxin free locale that you think will be your place of symptom resolution, you are gonna face and deal with ALL OF THE ABOVE.

JUST SAYIN'... that has to be considered as a reality check for all who are going to take the mold avoidance journey. Mold avoidance will absolutely and unavoidedly include all of the above. That's why it needs to be included in the discussion, that's why we are addressing it.

 

[soulfeast]

Want to add that I agree with the multi-chemical issue. (even if not practicing extreme mold avoidance which I cant see most of us being able to do)... We moved into a new house and that is complicating factors very much esp with unmasking if that is what is happening. I am smelling things I dont think I smelled before and maybe thats just because its a new house, I dont know .. so unmasking or not.. its a problem.

Its also very stressful relocating.. trying to find the "perfect" place or using an RV or whatever to scout our places is just too much for most people.

There have to be common sense solutions. I could not stay in my stachy home. We looked to find a place in the same town but it was so stressful even doing that given my limited physical conditon and my inability to handle much stress, when I called my parents and was told they had a new house my father just contracted to sell (he owns some property here) and they would let us stay here until we decided what to do.. we jumped on it.

Another problem is diff air, diff allergens, etc for the body to adapt to or not... and the potential for the air to be worse than where we were located. Time will hopefully tell here.

So yes no quarentees and stressful.. but I felt like I would die in that house. So...

I would think the chemicals, pesticides etc would be less of a factor if you can move on away if in a RV like vehicle, though. If you choose a not so great location to live, then you are stuck until you can find a better place.

 

[soulfeast]

new.. as in ready a week before we moved in.. so its exposure that has had little chance if any to offgass. Whether thats part of unmasking or not, i dont know. I am smelling stuff everywhere though. Not sure the role of unmasking to chemicals with biotoxin avoidance. I am not sure we have good outdoor air here either or if I am detoxing, unmasking, just overloaded.

have a back porch but it is cold here now. I have been opening windows and seems to help.. hoping I am not making things worse if the outdoor air is not the best. I live across from a lake that has recently been let down for the winter. Property across from me has a very low water table at the present while a few houses up they are at 8 feet.

 

[jenbooks]

Others may disagree but I say don't worry about the outdoor air. Usually outdoor air is a heckuva lot better than indoor air. The only times I wouldn't say that would be if there is a lot of woodsmoke, pesticide spraying, or serious pollution. But it doesn't sound like that's the case with you.

It's cold, but I'd get a really good sleeping bag (the kind that goes to zero degrees, the mummy kind), and a nice space heater. I'd even put a tent on the back porch if you want. I'd sleep on the porch.

A totally new house like that is going to be so full of toxic chemicals.

 

[Dreambirdie]

Others may disagree but I say don't worry about the outdoor air. Usually outdoor air is a heckuva lot better than indoor air. The only times I wouldn't say that would be if there is a lot of woodsmoke, pesticide spraying, or serious pollution. But it doesn't sound like that's the case with you.

It's cold, but I'd get a really good sleeping bag (the kind that goes to zero degrees, the mummy kind), and a nice space heater. I'd even put a tent on the back porch if you want. I'd sleep on the porch.

A totally new house like that is going to be so full of toxic chemicals.

I agree with you JB, on all points I've bolded.

A new house that isn't built with eco-safe products would take a longggg time to air out, especially if it contains any pressed wood, carpeting, or regular paints and sealers. All of these are full of voc's and formaldehyde, which are at least as toxic as mold for most sensitive people.

When I built my house in '95, I used the safest materials available back then, and still it took me almost 9 months to air my house to the point where it was livable for me. I had to turn the heat up high each night to speed up the offgassing, and then go back in the morning to open all the windows to let it air. And I had/have ALL tile floors, and ALL voc free paint, and NO pressed wood anywhere.

So like JB, I would encourage you to sleep on the porch in a really warm sleeping bag. Maybe in time you can find a way to enclose that porch with some eco safe building materials. I'm thinking maybe a glass enclosed porch would be easiest and quickest for you to set up, until the house can be properly offgassed and aired out.

I have to say that this is what upsets me about Lisa's Radical Mold Avoidance Agenda. I worry that some people who are chemically sensitive, (as well as being mold sensitive), are going to put themselves at risk, by bailing into environments that are loaded with chemicals, all for the sake of leaving the mold/biotoxins behind. It's a lopsided view, that needs to be addressed, and I am glad that jenbooks and I are here to help address it.

 

[Wayne]

CIIN Chemical Injury Information Network Website

I just had a link sent to me for this website. I believe toxic chemicals are the primary focus, but it feels like there may be a lot considerations here for mold avoidance as well.

Wayne
​

The Search For A Toxin-Free Shangri-La
​

The search for a safe place to live is one of the most troublesome, frustrating, and risky activities a person with chemical sensitivities can undertake. And yet for most sufferers, it will be one of the most important. CIIN does not make specific recommendations, but it does make two suggestions here that may be of help. The first is a set of basic principles to consider in looking for a place to go. The second is an alternative housing possibility in sharing accommodations..

BASIC RECOMMENDATIONS

Remember, there is no perfect place. Every location has its pluses and minuses, so do not become paralyzed by the expectation of finding perfection.

Wherever you are living, it is usually not a good idea to move away from a functioning support system, be it relatives or friends. (Do not make the mistake of thinking of your friends and relatives as a support system if, in fact, they are not.) However, if the spot where you are living is unsuitable for your health, you may have to relocate locally while staying near your support. Investigation will often find cleaner microclimates in even the most unlikely areas. Pay close attention to wind patterns and land usage, and stay at least 17 miles up-wind of the nearest source of pollution. Stay away from the suburbs or other heavily pesticided/herbicided areas such as golf courses or picture-perfect neighborhoods.

On the other hand, if you are going to move for your health, the best places to go are mountainous areas. The Rocky Mountain range from Idaho and Montana down to New Mexico is still considered one of the most pristine areas in the continental U.S. Again, be aware of wind patterns and agricultural uses. Ranching country is usually better than farming country because ranchers use relatively fewer chemicals. Also, if you have pets, staying above about 4,000 feet will reduce your need for flea control.

It is best to visit any area before moving there. If that is not possible, have a friend visit the area and gather as much information as possible about the climate, the politics, and the economics of the area. But do not expect others to catch everything about an area that you would, and do not expect others to make your decisions for you.

 

[soulfeast]

Just a point to again clarify. I am not an idiot and I dont blindly follow people. I did not bail out.. I HAD to go. Period.

I ended up in a place I knew better than to go to but was so desparate from how I felt in the house.. suicidal plunges from the dust.. after shuffling papers, after cleaning the laundry room.. without any input from Lisa.. I had no problem figuring this out. This house was given to me by my father. I hoped it would be ok.

I dont know if you all have experienced this. I think like I said in another post, I was masked to this before the mold remediation or something was released in the dust.. I had many horrible mood swings in that house but no certain cause and effect. I had more enregy about 6 months later.. relatively speaking.. and then the dust started "hitting" me... as Lisa has described.. it was like a form of a seisure in a sense or going down a rabbit hole.. all the time I could think through it but it felt like my mind was slipping.. I could instruct my husband how to help me even but was close to beyond help.

When you are choosing between drop dead depression and the potential of reacting to new house chems... esp when everyone else is doing fine and esp when chems have not bothered you so much in the past... issues but not a major stressor.. well,

That said, I appreciate critical thinking and questioning. Helps me clear my head and challenge my thinking. I also dont belileve everything I hear and question everything. I am not sure about agent ? but I am sure there as someting in that dust after the remediation and I am sure I had that reaction and I am sure I have similar reactions still, though not as severe.

I wish I had a choice and at the same time an grateful for the house and the support I have here. That said.. its not the perfect situation at all!!!

Ive camped before..in Alaska actually.. just so sensistive to cold now. But a good idea.

I agree about combing through all this info, perspective, opinion. There is no proof of any of it.

In my case, I had to get out. Now what to do.. Im not any worse off.

I see both points and honestly I am going insane with it all. I need some common sense strategies and to keep my ANS somewhat balanced in the process.

My sister was deathly ill here at one point for years and recovered here. I need to focus on that. She moved out of a wet basement, though she did not get ill there, she got worse there. After her NDE she started healing.. so there is nore to this than worrying about every little detail as well. If we dont share the same particular genetics then both of my parents are screwed up, which is probably the case, believe me. I feel ilke I hit the genetic crap pot.

Irritated.. chemicals or bad air? or the incesant "cross contamination", Lyme, babiesia, or fungal infection.. die off dysautonomia as my sister labled it all. She got sick of the details and just focused on healing, gave it a generic/general name and a general focus.. balance. For whatver thats is worth and not to trivialize any thought or any theory or any life. Thats the facts.

You know lyme is a living biotoxin in the body. I wonder how many other there are and if they are affected by teh weather.. is agent ? really in the air or triggered by it? Probably not the one Erik is talking about or they all had lyme (or whatever) I suppose..

seems to me once the BBB is busted you are in trouble.. going to react to all kinds of things.

Lisas info is intruiging and I am curious if others choose this path. We are all adults but I agree that there needs to be an atmosphere of polite critical thought and then support for those who choose this option from those who have been there. Its not an easy path to carve out on your own.

please pardon the typos.