Biotoxin/Mold Illness

[soulfeast]

If this is so as Erik says.. then the HLA type is less an issue? The toxins are not toxins without an inflammatory response in a sense?

Then that makes HLA type irrelavant? If so then what is relevant? What is triggering the inflammation if not the toxin and inability to tag it and get rid of it?

?? My husband also has a multisuseptable and has handled lyme and stachy exposure just fine so far. Played with mercury as a child, bitten my many ticks, has had to have plenty of exposure to biotoxins before our house had its experience.. ??? I am not sure he had the pesticide exposure I had as a child. I dont think he had as high a sugar diet as I did as a child, adult either.. xmrv???

Circulating toxins have to have a factor here. They have to have an impact.. do all HLA types identified by Shoemaker definitely not clear the toxins?

Hey Dan,

Thanks for your wonderful insight (as always!). I've observed the same thing, and not just with chemicals. Some of the more-or-less healthy family members of severely-il patients in our Columbus clinic got tested for heavy metals and were FLOWING with them. I recall Dr. Klinghardt say we're the leftovers of human evolution in the face of an increasingly toxic environment. Metals/chemicals/mold are not the problem per se; the differential in reactivity to these is the problem. My father has a mouth full of amalgams (seriously). My mom and dad and their families all grew up and lived in Taiwan, which is a MOLD HAVEN with constant rain, typhoons, and humidity. Yet I am the first one that I know of in either family that has ever gotten this DD.

Of course, if anyone knew the answer to why the differential in susceptibility and reactivity, we wouldn't be here right now. We'd probably be popping a pill or looking into gene therapy that addresses "the missing pathway." But here we are, susceptible and reactive 24/7 to whatever it is that's innocuous to just about everyone else, and the question is what are we gonna do about it. Sure, the end goal is to have researchers look into it and find exactly how we can manipulate effective detoxification & normal reactivity to "?" mold and/or mold toxins, but in the meantime, some are taking a non-ideal path to resolve these issues, often successfully, and that path is one that challenges livability and what most human beings consider a normal lifestyle. It is what it is.

The jury's still out on whether this "extreme avoidance" will help a very small subset, whether any of these recovered patients have XMRV, or whether hypothetically if we had a bunch of patients with the means and the help to get "out there" a large percentage or all of them would have a significant response. Unfortunately, very few researchers and doctors are looking at this issue through these particular types of lens, but I know that a small group of patients, researchers, and doctors are trying to change this on a very grassroots level. It will take time, tons of it, and it may never come to fruition. So in the meantime it really seems we only have two options regarding extreme mold reactivity: we can take the roundabout way to find out or let it remain a very interesting thought experiment.

Another tidbit from Erik:

"I know it sounds crazy, but these toxins are apparently not all that toxic without the
inflammation.

Like the difference between someone who goes into anaphylaxis from bee stings and
someone who doesn't. If the extreme responder could somehow get the immune system
to calm down its response, he might conceivably go back to tolerating a few stings now
and then."

 

[mojoey]

From what I've read, Erik's interpretation of Shoemaker is that the cytokine insult precipitates or unveils the HLA expression.

"The HLA DR can indicate whether you have the genetic makeup for susceptibility, but does not determine whether those genes have been expressed by a biotoxin exposure or cytokine challenge/cascade from ionophore toxins."

 

[soulfeast]

Interesting... then what makes one person with "dreaded" HLA type in same house as another with a "dreaded" HLA type have a cytokine insult that unveils the HLA expression. I wish I understood how this gene works.. it turns on or off an antibody reaction?

From what I've read, Erik's interpretation of Shoemaker is that the cytokine insult precipitates or unveils the HLA expression.

 

[Wayne]

It's fantastic for helping to break down chemicals and some molds. I've used it a lot in rooms that had to be repainted. Having the Aranizer on for 3 days helps the paint smell to vanish much more quickly. I have also blasted newly bought and chemical smelling items with it. Very helpful with that!

Hi Dreambirdie,

I'm happy to hear you had great luck with your Aranizer. Perhaps I should re-evaluate, as I do believe it's probably the best product available, if you can keep it running.

RE: Newly bought and chemical smelling items.

I recently had to replace a DVR from my cable company, and found it to be really smelly once I took it out of the plastic bag. I decided to try washing it down with plain old soap and water, and was totally amazed how it disappeared; no residual or lingering smells whatsoever. I'm going to try to remember to do this in the future; such a simple solution in this particular instance.

Best Regards, Wayne

 

[Wayne]

Hi All,

I've been having mold avoidance strategy thoughts running through my mind, and if I don't get them written up in a post, it's going to drive my crazy! Random thoughts can almost plague me sometimes, especially when I know I want to write them and get them disseminated. Anybody else have this kind of cognitive dysfunction side effect?

Anyway... Joey, Jenbooks, Slayadragon, and others considering all the variables regarding extreme mold avoidance by traveling to remote areas. Lisa, I think you mentioned that a metal RV would be better than a fiberglass one, because fiberglass has the ability to absorb mold (please let me know if I misunderstood you on this point).

A couple thoughts: In some of my recent research on EMFs, I discovered that using wireless devices in enclosed metal areas (such as cars) increases the EMF intensity by a factor of 3-4 times. This alone would make me pause about trying to spend a lot of time on the internet while in an enclosed metal area.

And then there's the references I've seen regarding various kinds of mold proliferating in EMF and wireless radiation environments, apparently growing at rates up to several hundred times faster. I've never taken the time to investigate these references, but I think it might be something to seriously consider as well.

OK, I can't think of some of my other thoughts at the moment, so will try to regroup and try later. I hope everybody had a nice Thanksgiving day. Later.....

Wayne

ETA Regarding fiberglass absorbing mold. Might it be possible to address this by using Concrobrium to wipe it down regularly, especially if it's just been exposed to mold?

Another ETA: I have a small 15' fiberglass (Big Foot brand) RV, and it has never leaked on me. It seems so many metal RVs have a tendency to leak. Anyway, this seems like another risk factor to consider.

 

[Wayne]

Ashland / Southern Oregon as a Haven ?

However, the raw & living foodists seem to advocate a low protein diet (5% of total diet) which I don't think is a good idea for ME/CFS patients tend to burn amino acids for fuel more than healthy people (according to Rich Vank).

Maybe I'll try a raw foods diet sometime soon, just to see if I can do it. What kind of protein would it include, do we think?

Joey, I also don't think a low-protein diet is a good idea; in fact, I think it's quite a bad idea for most of us. I've struggled with this question of protein intake for many years, always feeling I should be getting more, but realizing my body had a hard time digesting high protein foods, and often exacerbating many of my CFS symptoms after ingesting them. I've mostly depended on raw goat milk and cheese and organic turkey as my best (though not optimal choices) for quite some time.

Recently, I began to make raw goat milk kefir on a regular basis. This may seem extreme to some, but I now rely on it for almost my entire protein intake. I rarely experience any kind of the heavy, overwhelmed feeling I used get after eating higher protein foods. In fact, drinking this home-made kefir generally leaves me with sort of a "warm" feeling in my gut afterward.

I believe this regimen of mine over the past several months (up to 2-3 quarts of kefir/day), has allowed a certain amount of healing to take place in my GI tract, and noticeably reduce some of the hyper-reactivity in my body. I think a lot has to do with the easy digestability of the kefir, but I think a lot also has to do with the approximately 30 naturally occurring probiotics that kefir contains.

Lisa, I know you mentioned your (and Stormyskye's ?) experiences with the probiotic Three Lac. I've used it in the past and also like it. When I compare the good results I've gotten from the kefir to the good results I got from Three Lac, I would say the kefir benefits have been many times more beneficial.

When I consider some of the mold avoidance strategies that would involve uprooting myself and being on the road, I keep things like the above in mind. How well would I do without my kefir which is probably about 75% of my entire diet at this point (I know, that sounds pretty extreme).

So I'm thinking more along the lines of staying here in Ashland, and very methodically (and creatively) begin to explore different ways to practice greater and greater mold avoidance, but still being able to take advantage of a very reliable base to help me with the process.

Southern Oregon is apparently regarded as one of the most bio-diverse areas on the plant because of it's numerous micro-climates. Apparently, there are three separate and distinct mountain ranges that converge in this area creating such a unique environment. Ashland has a wonderful food co-op, and is also a hub for alternative health care practitioners. Just thinking about not having access to much of this leaves me with a certain feeling of vulnerability.

Anyway, I thought I would paint a little picture of my current local environment. I can't help but wonder if it might even have all the essential qualities that could make it another haven (such as N. AZ) for people like us. All this great information from everybody is really helping me get more focused, and helping me with my own strategic thinking. -- Thanks to all for your contributions.

Best Regards, Wayne

ETA Southern Oregon is also quite a rural area. I can drive about 10 miles in various directions and feel totally away from things. Also, there's a lot of national forest around here, which allows people to do wilderness camping for up to two weeks at a time in any given location.

The one concern I have is the elevation, and how this might affect some of my options. In this regard, I've had lingering thoughts about how well mold avoidance works when optimal places might be at higher locations. It doesn't seem to have been a problem for Erik in the least.

 

[Wayne]

Cordless Phones

II have never heard of a person recovering from avoiding EMFs. I have actually done this religiously (hardwired at home, avoiding cafes), especially because I didn't want the EMF frequencies interfering with my photon treatment. This has gotten me nowhere symptomatically, but that is just me. ............... It is also worth mentioning that many physicians and researchers have said that cordless phones are the greatest offender, far more than wifi and cell phone radio frequencies.

Thanks for sharing your experience. I find it very interesting, especially since I'm seriously considering some extreme EMF/wireless radiation avoidance. One of the reasons I've focused more on this recently is because of a local alternative health care facility that was facing the prospect of having AT&T install cell phone antennas very close to their facility. They were forced to research many of the effects of these types of antennas, and got quite an education in the process.

The owner of the facility had been troubled for over a year regarding some health problems he was experiencing, many of which sounded very similar to symptoms of ME/CFS. Once he educated himself, and removed a router that he had been working next to for the previous year (when his symptoms started), his health improved quickly and pretty dramatically.

So here was a very healthy guy who was being negatively affected by wireless radiation. It makes me wonder how many PWCs are being affected just as much or possibly a lot more. It's just been very sobering for me to think about these possibilities recently. Another thing this guy learned was that some people will not be noticeably affected by EMFs/wireless radiation right away, but the deleterious affects can be cumulative, and may not show up for years later. Another sobering thought.

RE: Cordless Phones: You're comments are very accurate. This same guy says he discovered the same thing (with his very sensitive meters) and advises to avoid cordless phones like the plague. The radiation they put out is just as high as if you had a cell phone tower right next to your ear. They apparently got much worse in just the last year or so.

Gosh, I've been doing a lot of writing here today. I think I'll rest for a while; It feels' like I've gotten some of those rambling thoughts to settle down. :victory: :Retro smile:

Wayne

 

[Dreambirdie]

Hi Wayne, Hi All--

I've been mulling over some of the ideas on this thread, and wanted to share my own.

I've had CFS/MCS since 1977... wasn't diagnosed properly with either until about 1985. Initially, after first discovering I had MCS, I would periodically bail out of my home at that time (a slightly moldy beach cottage a block from the ocean, that I lived in from '84-'96) to assorted supposedly "greener" pastures, in the attempt to find my perfect eco-safe residence on earth. I had a neighbor who poisoned me with his spraying while I lived there, and caused the biggest setback of my illness, so this was definitely a motivating factor for me to get away. And btw the poisoning was HUGELY more toxic to me than the mold had ever been... the mold turned out in fact to be MUCH more manageable. I will say more about that eventually, but for now I do not want to digress...

My point is that, in my experience, I found that looking for that ideal, mold-free, perfectly eco-safe place was so stressful, exhausting and crazy-making, that I actually regret that I wasted my time doing that, and would not consider doing it again. First of all, I have never done well on the road in a car, as CO is a toxin I do not process well. I tried using a car air filter and a car ion generator, but found them pretty much useless in taking care of the problem. I did find breathing oxygen from a tank to be somewhat helpful, but sometimes when I got too much of it, I ended up quite whacked out from it.

Also, because I'd been drinking RO filtered water and eating an all organic diet since 1977, I found it extremely difficult to go anywhere too far away from home for longer than 3 days... which is how long my packed up containers of food lasted me in my cooler. I needed my pure water and my organic food, as I was not able to go out and eat at any ol' restaurant. And how many all organic restaurants line the streets in the cities of the USA... Even here in Santa CRuz there are only 3 I know of!

Lastly, and probably most significantly, as it turned out in my case, whenever I bailed out of my relatively safe (though by no means perfectly safe and mold-free) home, looking for something better, what I ended up in was ALWAYS WORSE. And I do mean ALWAYS. I checked out places as thoroughly as I could over the phone, asked lots of questions, and tried to stayed in places that other really sensitive people had recommended to me, in various locations in both southern and northern CA, in Santa Fe, in Boulder Colorado, even locally in Santa Cruz.... and I inevitably came home sicker and more exhausted than when I had left. The amount of toxins and mold I witnessed in other places often made my jaw drop.

I showed up at a yoga retreat place one night in Santa Barbara to discover that they had just painted the entire kitchen with OIL BASED paint! ...and these were people who didn't allow you to cook meat in their kitchen, because they found it "offensive." I stayed at an "eco-safe" retreat in northern CA, where they had promised to use all chemical free and fragrance products, except of course for the TIDE, which they had washed all their bedding and towels in, and which the place reeked of. I camped out on numerous occasions in places I thought would be pristine, until someone showed up a little later in the evening, with a bunch of kerosene lanterns that they kept on all night, or better yet---a diesel run generator! Once I stayed in a house in Santa Fe, recommended by an MCS friend, who had sniffed it out for me and had given it her stamp of approval. The place was an old adobe--and turned out to be so moldy that I had to sleep with my head in the doorway, with the monsoon rain making it impossible for me to sleep outside... and then 3 days after the rain finally cleared, they decided to pave the road up to the house. I could go on and on and on about the toxic eco-resorts and assorted mold pits that I walked into, and then straight out of, to then spend the night sleeping in my van, with my pee container on one side and my spoiling food on the other. I was always so HAPPY to get home to my less than perfect, but wonderfully better than everyone else's, and of course slightly moldy! beach cottage.

Just saying... out of the frying pan into the flames was how these things usually worked out for me. At this point, unless I had an eco-safe RV, with a great solar fridge, and an air filtration system that worked like a charm to filter out the CO, I wouldn't be throwing myself out into that big stinky toxic world looking for a mold free paradise. That's just my 2 cents. Some people will of course fare better than I did. And good luck to them.

 

[jenbooks]

Wayne, it sounds like you have many plusses where you are. Besides, winter is a bad time to travel. As to metal trailers, a number of people have developed ES in them, as I know from joining yahoo groups. Some are metal sensitive as well; I know I am. I am leery of a metal trailer.

We are all individual. That's what these stories tell us.

DB frankly you sound like you lucked out with the seaside cottage. I'd love to find something that good!!!

 

[Dreambirdie]

DB frankly you sound like you lucked out with the seaside cottage. I'd love to find something that good!!!

My seaside cottage had green mold growing up the wall the first winter I lived there. But I was only paying $300 rent and it was so close to the ocean that I was determined to make it work.

To remedy the mold as best as I could I put a sump pump in the crawl space under the house and added vents to each side of the house. It was only 400 sq ft, so no big deal for that. Then I ripped out all the carpets and put in a linolium floor, which I sealed with a sealer to prevent it from off-gassing. I turned off the gas and lived with a hot plate and a space heater for 12 years. The back porch, where I kept my bike and stored a few things, was hopelessly moldy--so I ran my aranizer in there and had someone bleach it for me every 2 months.

The reason I wanted to mention this place is that it was FAR from perfect, but I made it workable with my own effort, and my own money--as my landlords, were never willing to EVER fix a damn thing there. If I had bailed into some other "more ideal" place I could have gotten into far more trouble (as I learned in my futile attempts), than I did by just STAYING PUT and making it more livable.

 

[floydguy]

My seaside cottage had green mold growing up the wall the first winter I lived there. But I was only paying $300 rent and it was so close to the ocean that I was determined to make it work.

To remedy the mold as best as I could I put a sump pump in the crawl space under the house and added vents to each side of the house. It was only 400 sq ft, so no big deal for that. Then I ripped out all the carpets and put in a linolium floor, which I sealed with a sealer to prevent it from off-gassing. I turned off the gas and lived with a hot plate and a space heater for 12 years. The back porch, where I kept my bike and stored a few things, was hopelessly moldy--so I ran my aranizer in there and had someone bleach it for me every 2 months.

The reason I wanted to mention this place is that it was FAR from perfect, but I made it workable with my own effort, and my own money--as my landlords, were never willing to EVER fix a damn thing there. If I had bailed into some other "more ideal" place I could have gotten into far more trouble (as I learned in my futile attempts), than I did by just STAYING PUT and making it more livable.

I agree. That's why I encourage people to test the extreme mold avoidance effort first. I don't think everybody can benefit from it and there are significant downsides to it.

 

[jenbooks]

DB, a small ocean place with good air flow is easier to fix IMO. Also salt air tends to keep mold spores in check. Perhaps the green mold was an algae or else a nontoxic mold. It isn't easy to find such places. The rent sounds great even back then.

As to radical avoidance, i've certainly learned a lot unfortunately. I'm not sure that term is too user friendly and as DB noted, other toxic exposures are really bad, too. In general I'm trying to figure out the best compromise. Ultimately it might be back in Texas which gets a bad rap for toxicity when as a huge state with eight climate zones there are a number of very good areas. Who knows. But to get decent to good air, a mild climate, a good holistic doc, and some dwelling to stay in that at least is bearable while building a truly safe one -- that is my still elusive goal. Given how horribly toxic most rentals are, and that landlords want year leases, it is tough. I will not commit to a lease if I haven't slept in a place for at least a week.

It's just all soooooooo individual.

 

[slayadragon]

Here are a few personal observations.

Many of the best locations for me are outside of cell phone range, but that’s not always the case. Right inside Wichita (where the cell phone signal obviously is strong....it’s a city of 350,000), the air has felt as good to me this week (during Suicide Season!) as almost anywhere I’ve been on my travels.

I keep trying to be open to the idea that EMF’s are an issue for me, but they continue to feel like a minor concern at most. If I attend to the substances that I believe to be mold/biotoxins, I stay well. If I stop being vigilant about the mold/biotoxins (especially when it’s the “?” that comes from the sewers), I get sick again right away.


That being said, I just came to the realization that part of the reason I talk rarely on the phone is because I just instinctively feel bad about bringing my cell phone up to my head. It feels okay if it’s just on my lap (where the Verizon card for the computer is), but next to my ear (when it’s turned on) feels very dangerous to me. Dental X-rays also feel dangerous, and the idea of going through that full-body scanner at airports upsets me as well. Using the phone doesn't immediately send me into an ME/CFS tailspin.....it just seems intuitively not a good idea to me. So I’m going to go look for a phone headset soon.

I don’t quite know how to say this, but am increasingly of the belief that the best way for me to find out what locations are good vs. bad for me is to look at how people who identify themselves as having ME/CFS are doing there. If people are profoundly sick, I anticipate that I would be as well. (The last time I tried visiting a really PWME, in Ann Arbor, just 10 minutes driving through the city was enough to make me really sick even with decontamination.) If people are moderately sick, I feel confident that I could survive there for a few days and emerge relatively intact. If people who used to be really sick have recovered or made strong improvements there through any means, I think about how to get an invitation to stay for a while.

So I’m going to offer the general comment that if people on this board have done everything that they can to try to improve their health (including looking for mold inside their houses) and still are extremely ill with Incline Village style ME/CFS, my suspicion is that their neighborhood’s probably not going to be a good one for me. Or for other people with this illness, maybe.

Increasingly, most of the things that ME/CFS sufferers here do to improve their health seem to me compensations for the effects they’re getting from the biotoxins.

If people with this disease are getting a lot of biotoxin exposure, there are ways to minimize its effects. This mostly involves the subtraction of just about everything else we associate with “normal life” -- food (fruit/wheat/sugar/meat/etc./etc.), air (“oxygen toxicity”), exercise, TV, telephones, sound, light, computers, emotional stress, all chemicals, activity of all sorts.

But at least for some of us, subtracting out just the biotoxins has made it unnecessary to avoid any of the other things at all. (Though probably a diet consisting solely of chemicals and sugar isn’t good for anybody, Stormy and I just today concluded.)

Obviously, subtracting the biotoxins at the level Erik suggests is not realistic for most people. But it seems to me that the more extreme people need to be in terms of various ME/CFS treatments to keep from drowning, the more potential there is for them to improve by moving to a better place.

(Especially if they leave all their contaminated stuff behind, of course.)

On the other hand, I've recently come to think that if ME/CFS patients already are at a relatively high level of functioning compared with other people with this disease, it's possible that additional avoidance won't help that much. If people already can exercise at a relatively high level, for instance, then I tend to think that maybe environment is not as much of an issue for them as it is for some of us (or that their current environment is really good). I had some symptoms (e.g. cognitive, fascial) that did not go away just with extreme avoidance, and so by all rights other people shouldn't expect them to go away with avoidance either.

Again though, these are just my current musings rather than some sort of confirmed "truth." It's a learning process for all of us.

Best, Lisa

 

[Dreambirdie]

If people with this disease are getting a lot of biotoxin exposure, there are ways to minimize its effects. This mostly involves the subtraction of just about everything else we associate with “normal life” -- food (fruit/wheat/sugar/meat/etc./etc.), air (“oxygen toxicity”), exercise, TV, telephones, sound, light, computers, emotional stress, all chemicals, activity of all sorts.

But at least for some of us, subtracting out just the biotoxins has made it unnecessary to avoid any of the other things at all. (Though probably a diet consisting solely of chemicals and sugar isn’t good for anybody, Stormy and I just today concluded.)

Obviously, subtracting the biotoxins at the level Erik suggests is not realistic for most people. But it seems to me that the more extreme people need to be in terms of various ME/CFS treatments to keep from drowning, the more potential there is for them to improve by moving to a better place.

Okay, so how much of "normal living," that we have become so adjusted to, is really ALL THAT normal? Eating crap, disguised as food, that is highly processed beyond all conceivable nutritional content and also drenched with pesticides? Drinking caffeinated and highly sugared sodas... I think it's 9-10 tsp per can? Bombarding your brain consistently with radiation from cell phones and computers nd electronic whatchama gadgets? Breathing air loaded with hydrocarbons and CO? This is all part of "normal" in our world, but far from anything you'd ever consider HEALTHY. My eastern European grandmother, who lived to be 88 despite a heart condition she'd had since childhood, had a a word for all the disgusting weird eating habits and personal habits that she encountered in modern America in the 60's... and the word was "feh!" as in "yuk!" That's the same word that comes to mind when I consider what passes for normal, as far as what people put into and onto their bodies these days. I really don't want any part of it.

Of course, you shouldn't live in a mold pit either. But then there is mold, MOLD, and *M-O-L-D* It's a matter of degree, and personal tolerance levels greatly vary. Though trading in your mold/biotoxin load for an ice cold Coke and a McHeartAttack burger just sounds kind of "feh!"

There is something to be said about BALANCE and INTELLIGENT CHOICES. In my experience, you can only make good decisions when you subtract obsession and panic from the equation. That's not always easy to do when you're desperately ill, but unfortunately that's when you need to do it the most.

 

[Wayne]

Eating crap, disguised as food, that is highly processed beyond all conceivable nutritional content and also drenched with pesticides? Drinking caffeinated and highly sugared sodas... I think it's 9-10 tsp per can? Bombarding your brain consistently with radiation from cell phones and computers nd electronic whatchama gadgets? Breathing air loaded with hydrocarbons and CO? This is all part of "normal" in our world, but far from anything you'd ever consider HEALTHY.

Dreambirdie, I asked my nephew and niece (in their mid-20s) a while back about their health and that of their friends. Growing up, most people just rarely went to doctors for serious or chronic issues. So I was curious as to what the situation was like today.

Their answer: Their friends are always getting sick and always going to their doctors for one thing or another. It seems like our "normal" American lifestyles aren't so good for the relatively young and relatively healthy either. Doesn't bode well for the future health of our society, or for the ability to pay for all the care that will be necessary.

Wayne

 

[slayadragon]

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

 

[Sushi]

RE: Cordless Phones: You're comments are very accurate. This same guy says he discovered the same thing (with his very sensitive meters) and advises to avoid cordless phones like the plague. The radiation they put out is just as high as if you had a cell phone tower right next to your ear. They apparently got much worse in just the last year or so.

Wayne

Hi Wayne,

I switched to a Panasonic corded phone a year or so ago. (KT-TS620W) My doc showed me the same research. It is a mild pain not to be able to roam around with the phone--but a long cord and a headset with a long wire make up for it a bit. I do feel safer, as each year they keep increasing the power of the cordless phones and every time you cross the field between the base and wherever you've left your phone, you are in the radiation field.

In Europe you can get cordless phones that turn off between calls. They are more aware than in the States.

I also have diodes stuck on the computer and other radiators--plus I don't use wi-fi.

Best wishes,
Sushi

 

[Wayne]

A Few Words in Support of Extremism

Joey and Lisa, I can't quite remember some of your comments, but I just wanted to mention that I'm a big believer in extremism, because it many cases it's common sense pragmatism. I'm sure many would consider many of the things I've done, and do, to be extreme to the point of considering me as having OCD.

From doing coffee enemas, to having a balloon inflated in my sinuses to move my locked cranials, to doing the Atlas Profilax, removing my amalgams, metal crowns, extracting a "perfectly good" root-canaled tooth, making raw goat milk kefir 75%+ of my diet, doing energetic and polarity exercises religiously on a daily basis, and much much more.

I'm sure many people would consider me a real nut case if they knew what I all do. Doing the things that I've learned to work for me however, is why today I'm able to function at about 25% as opposed to the approx. 4% I was once at. But I will never be satisfied with my progress unless or until I feel I have absolutely exhausted all possible options that might help me further.

Mold awareness certainly fits into that category. I feel quite committed to determining to what extent mold may be affecting me, and what I might have to do to adequately address what I may end up having to do. (How's that for a convoluted sentence? LOL).

I guess I feel committed to this because, as I mentioned in a separate thread, I view my health journey as part of my own spiritual journey. For me, that means attempting to tap into all my resources to creatively seek solutions for myself as best I can. I may not end up with optimal health, but I will have some very valuable experiences under my belt just from trying. For me, the journey is more important than the end result. I just can't give up.

In light of my above comments, I just want to say that I have the highest respect for Erik and Lisa, and the remarkable efforts they've made to improve their health. I have perhaps an even higher respect for their determination to share what they've learned to help others on their health journeys. I very much appreciate their efforts, and have learned much from their generosity.

Best, Wayne

 

[Dreambirdie]

However, is the aversion toward extreme avoidance due to some people being categorically against what is extreme and obsessive? In other words, does the attitude have much to do with the result? Does the opinion that the radical avoidance of mold is unbalanced stem from whether it is realistic for most patients? That it leads to a significant change in lifestyle?

Hey Wayne--

I've been an extremist too, though not nearly the nut case you've been!

I've seen so many single-minded theories, and silver bullets come and go over the years. And have attempted many myself... all of which failed to "cure" me. As I already wrote on a previous post, I bailed out of my own home on quite a number of occasions in search of "perfect air" somewhere out there, only to have the rude awakening that there was no air nirvana. And that one person's ideal air was not going to be my ideal air.

From an intuitive level, I *KNOW* that there are MANY factors that need to be addressed in my personal dealings with CFS. Mold has been JUST ONE of them. Keeping that in mind is what I mean by balanced and sensible. THat kind of attitude has helped me survive: being struck by lightning, being poisoned by penta-chloro-phenol and CFS in addition.

I think it's good to have a discussion that includes doubt as well as faith in a yet unproven theory. I am not an Extreme Mold Avoidance Believer, and don't want to pretend that I am. But I do hope those who try it out find some benefits.

 

[jenbooks]

We are all individual. That's what I keep emphasizing.

If it sounds obsessive to travel around trying to determine where I feel good enough (as in Winnicott's good enough mother) within driving distance of a good doc who doesn't want to churn me with unecessary tests and treatments but just give me what works for me, and then try to do the improbable of finding some living space that is at least not terrible while I build -- then that's obsessive. If I'd only listened to others I'd never have spent good time in Texas. Whereas others may do well at high dry altitudes I suspect I no longer would. Moderate mild climates seem best. We shall see.

I looked at lots of living spaces and have gotten great advice on nontoxic building. I went at that like a research project.

I agree with DB 1000000% on this toxic world. It takes discipline to buck it as we are all mass hypnotized. I almost never watch tv but I watched Wizard of Oz tonight. It was great, but the commercials were bizarre. The commercials probably represent much of regular life but I think it's pretty screwed up. When I camped I saw the milky way, befriended an armadillo, chased away a raccoon, stared down some deer, walked in nature, slept in a tent during a soothing downpour. I think most are perversely out of touch with nature which is our birthright and home. Our food is terrible. Chemical toxic exposures are enormous and pervasive. To bury your head and eat what's served at groceries and restaurants because it's there and everybody else is doing it is a form of insanity. Mass insanity.

OTOH, toxic mold is my worst trigger. For me, it's really bad. I don't think it necessarily is so for every cfs/Lyme person. Who knows. We have to listen to our own bodies.

Since I left NY and my black mold apt I haven't had the black moods. Or the really bad foot cramps. I realized that the other day -- the foot cramps; haven't had one in a year. When I encounter toxic mold in other dwellings I get many symptoms back tho I think nothing has been as bad as my apt was.

Signing off for the night saying basically, listen to everybody then do what your heart and body tell you. Your path will be unique.