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Biotoxin/Mold Illness

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by soulfeast, Aug 22, 2010.

  1. JanisB

    JanisB Senior Member

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    Thanks Lono. Useful link. I went to the website after printing out the article, and now have a better idea what people are talking about.

    What interested me most in the article is that he said that everybody with CSF has this pattern of low and high tests. Does that mean we all have mold sensitivity, or what I thought it might mean is that we all have the pattern of high inflammatory molecules damaging the MSH receptors, and t hus low MSH with all the effects of it downstream.

    JanisB
     
  2. slayadragon

    slayadragon Senior Member

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    Hi Janis,

    Somewhere on this thread, you can find a discussion of environmental mold testing. At some point, someone (maybe me) is going to have to go through all that info and organize it so it's not so hard to find stuff.

    http://www.forums.aboutmecfs.org/sh...l-Points-quot-Approach-to-Address-CFS-Viruses

    Since I wrote that summary, the toxicologist Jack Thrasher (who focuses a lot on mold) has commented that the ERMI is not accurate at finding Stachy. He works with Ritchie Shoemaker closely, so Shoemaker may have changed his opinions on the usefulness of the ERMI also.

    As I mentioned elsewhere, mold test kits will not give you any useful information and likely will throw you off track. Erik discusses this topic extensively in his book.

    In general, you seem to be very intuitive in deciding what supplements and treatments might be of use to you. I suggest that you use those intuitive abilities in evaluating your environment. I think you will be surprised at how much you can determine, even without unmasking in the Godforsaken desert, if you just trust yourself.

    It's my belief that there is something about ME/CFS that causes people to be especially reactive to small amounts of inflammation- and oxidative stress-producing toxins. Biotoxins fit this especially. A few other substances (such as phosphine and naphthalene) have these characteristics as well, and we tend to hyperreact to those things too.

    Why it is that we hyperreact is as of yet mostly unexplored. I tend to think that XMRV or other viruses may be in part responsible, but I'm not sure what the mechanism is. Figuring that out may be a key to understanding and fixing the disease.

    (That's the reason that I'm trying to do mold education: to bring the topic to people's awareness so that researchers/doctors will study it.)

    Some people with ME/CFS seem only to be moderate responders to biotoxins. I've seen only a few cases like this so far. Anecdotally, I think these may be people without biotoxin-susceptible genotypes. That may allow them to process small amounts of toxin quickly enough that the inflammatory response doesn't start going out of control. If the hit is large enough (especially with constant exposure like living in a moldy house), they may be affected as well.

    It seems that it goes the other way too: that exposure to inflammatory substances like biotoxins makes XMRV go active. (That's the part that Cheney has finally realized. The hyperreactivity component does not yet seem to be on his radar screen. Maybe I should try for an audience with him to explain it. I'm not sure.)

    Does any of this suggest that mold is the "cause"? I'm not sure how to answer that. Depends on what you mean by "cause."

    But if I'm right about this, it seems like mold is an issue for all of us. At the very least, like sugar is an issue for diabetics.

    Best, Lisa
     
  3. jenbooks

    jenbooks Guest

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    Mojo, I want a mold dog, too. There is a house I'm seriously interested in Texas and rather than somehow convince the seller to rent it to me for 3 mos to be sure I'd love to get a fricken mold dog in and there are no mold dogs in Texas. And shipping a mold dog from AZ or FLA is a bit pricey. Arg.

    Anyway, I'd like you to keep posting, I find it interesting. I really haven't ever done that unmasking thing that I know of. I just get sick with familiar symptoms around toxic mold, and better away. I also get sick from chemicals. I recover from chemicals quickly. Toxic mold can linger a bit longer.

    I do agree, many people are living in bad environments and don't know. But some are simply not affected. And then there is the sad situation where people know, discover leaks, and are sick, and just can't bear to face it, even when every evidence is staring them in the face for a sick building.
     
  4. dannybex

    dannybex Senior Member

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    That's probably the main reason why the majority of peeps don't take this stuff seriously -- because the majority are not affected, at least not in the same 'unconventional' way. Of course that doesn't negate the fact that some are severely affected, but I think finding out the 'why' (and there may be multiple reasons) is going to be key. Why is Joey sick, but not his parents or other family members(?)...

    Is it genetics, methylation or sulfation or other problems, total body burdens of other environmental factors, XMRV or other viral, bacterial, fungal issues, etc., etc., etc.?

    The Washington Toxics Coalition studied ten local residents back in 2006, found that "Every person tested had at least 26 and as many as 39 of the toxic chemicals we looked for in his or her body. This pollution in people came from everyday activities and products."

    Yet all of them appeared to be in good health, at least at the time the results were released. It would be great if they could study a much larger sample of the population. And even better if they would include some of these bad molds as well. Bad, being an understatement.

    http://pollutioninpeople.org/results/whatwefound

    They're a great, great organization btw -- just released another study which found hazardous chemicals in thousands of flooring and wallpaper samples:

    http://watoxics.org/news/pressroom/press-releases/flooring-and-wallpaper-study-finds-toxic-chemicals

    I'd love to borrow one of those mold dogs too. :) Is there a way of finding out if they're available in your area?
     
  5. jenbooks

    jenbooks Guest

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    Danny, those people may look healthy but if you took some time to look at peer review research on pollution and morbidity/mortality, you'd find much higher rates of many common diseases such as cancer, heart disease, asthma, diabetes, lou gehrigs you name it, in polluted areas. So nobody's invulnerable, even if they look so today.

    Joey, maybe their food was healthier, and they didn't get vaccines. The world is so much more polluted these days. And who knows as you say maybe they don't have a mouse retrovirus, but then, why not? Isn't it moderately contagious at certain points?

    I don't know that people need to go to GFD in the purest sense of the word. They need healthy air, and a healthy home. But that's so rare to find it's almost nonexistent. What is that about?

    And also, what is real health? My Atlanta doc's office manager/marketing director is a 52 year old energizer bunny with a constant smile. She sleeps five to six hours a night and wakes refreshed, and goes goes goes. Her husband says she has two speeds, fast and stop (when she falls asleep). Kind of like a healthy child--remember the energy you had? She's so healthy because she's on a 100% raw food diet, which cured her gallbladder she was about to lose, caused her to lose 80 pounds, improved vision in both eyes, cured carpal tunnel etc. I wish I was as disciplined. She told me to get dairy out of my diet...difficult...I also learned from her that the unpasteurized organic almonds I was using to soak and make fresh almond milk, weren't. Only ones from Spain are unpasteurized. The farmers here were given five years to keep labelling their almonds unpasteurized even when they had to pasteurize them. Isn't that lovely?

    A long aside, but though many people we know may not be "sick" how many are truly healthy and full of vitality and energy?
     
  6. mojoey

    mojoey Senior Member

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    hey jen,

    i think there is a lot of variation in "healthy folks" from being on the fringe of disease to energizer bunnies, as you say, and those people may also be one marathon+killer flu away from where we are. However, I think there is a huge drop-off between the bottom of that range and where ME/CFS is, and I wonder if most ME/CFS patients would easily agree on this.

    I have rarely heard of another illness where patients are literally crawling around to use the bathroom or getting bedridden for days from talking on the phone for an hour in their 20s. Non-fatal AIDS is really the most apt description. Many cancer patients end up back at work, as do AIDS patients on treatment. I think the closest example I can think of is patients with heart failure (which according to Cheney is much more than just an analogue), and even that can be much improved with stem cells, which have not worked for the majority of ME/CFS patients, just like ARVs alone has not been a wild success for most. I hope that XMRV is "it", but I'd be willing to bet the farm that it's not enough by itself. A perfect storm seems a much more likely cause. Again, Erik calls it an "infection-induced" reactivity to the mold toxins, but I kind of think the order is not as important as the two both happening within a short period of time, to patients that have a genetic susceptibility. This is just not the kind of paradigm that we've ever heard about in historical epidemiology of disease

    I wouldn't be surprised if my parents had XMRV. I know my parents are on the low end of the "healthy" range. Being bombarded by an increasingly toxic environment and food source simply cannot lead to better health in populations, only worse. Yet I just can't help thinking that the ME/CFS is far too abrupt and steep of a drop-off from any conventional descriptions of health to be explained by the factors that account for progressive disease in the rest of the population.
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Joey,

    I know you are going to "move on," but is your family going to treat the HVAC system to get rid of mold? And if so how? When I was in Florida I used to periodically run ozone for 6 hours into the air intake on my heating/cooling system (while I was out!). Don't know if it helped, but didn't hurt. I had had the system cleaned by professionals but doubt if they really got rid of much mold.

    I used to run the oxone generator in closets and other hidey-holes too. Plus keeping a dehumidifier going.

    In Florida, wetness--either from hurricanes or humidity--was the enemy. I looked out on water on 3 sides and had visions of it rising up to "get" me. (It really did in the hurricanes--the island would go 5 to 10 feet under water.)

    Sushi
     
  8. mojoey

    mojoey Senior Member

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    Hey Sushi,

    We're having someone come, clean, and possibly replace the system (change from open-air to closed-air system). The ozone is a good idea! I have an ozone machine at home so I'll do that after everything is replaced. Thanks for the suggestion.

    Although I'm ready to move on, I'm hardly ready to leave my parents in a moldfest. Ideally I want my parents to move as well, but stubborn roots trump "ultra-sensitive" son with lost voice.
     
  9. Navid

    Navid Senior Member

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    joey:

    but stubborn roots trump "ultra-sensitive" son with lost voice.


    sounds like an ancient proverb. : )

    good luck with all of it: your part and helping your parents getting things cleaned up for themselves.
     
  10. mojoey

    mojoey Senior Member

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    I was trying to think of a proverb with deep roots, failed epically, so created my own ;)

    thanks for the luck... I'll need all of it!!
     
  11. Wayne

    Wayne Senior Member

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    Aranizer / Concrobrium

    Hi Joey,

    I was wondering if you've ever heard of an Aranizer. It puts out ozone (O3), but also puts out what they call polyatomic oxygen (O2 - O4 - O6 - O8...). It's touted as being able to break down various chemicals far better than O3 alone. I believe they say this polyatomic oxygen is similar to the kind of oxygen that is found at higher elevations.

    I've had one for years, and when we were at our previous residence, I would place it right next to the air intake (on the floor) going to the furnace, and turn the fan to ON instead of AUTO. This would then circulate it through the entire duct system of the house, and of course to all areas of the house. Alea didn't care to have the fan on at night, so it would generally be on about half the time.

    We started doing this when there was a lot of heavy duty construction going on right across the street for a number of months, with a strong diesel smell in the air a lot of the time. Our neighbors were all complaining how dusty their houses were during this time, but once we started doing our aranizer thing, the air in our place was always pristine (we got a lot of comments and compliments on it), and the dust in our house was close to non-existent.

    I actually considered becoming a distributor for this company. What I had in mind was to contact house construction companies, and work with them to set up one of their products right into the guts of their heating and ventilation system, supposedly to prevent mold from ever getting a foothold in either the furnace or the ducting throughout the house.

    The problem was my aranizer broke down about once a year, and it was always a pain to get it sent back to Ohio, fixed, and returned. They always said this was highly unusual, as most of their products would go years without need of repair. For various reasons, I lost trust in this company, but I liked their product when it worked, and I liked the program for trying to prevent mold in the first place.

    Another preventative measure to consider: Concrobrium. It's an environmentally anti-mold product that was developed about 5-6 years ago, and that is normally found in stores like Home Depot, Lowes, etc. This product is also sold in large 55-gallon drums to contractors who treat the entire house during the construction process. I have a friend who is super mold sensitive (and has MCS), and swears by it.

    This is a product you might want to consider having on hand wherever you go on your travels. If you get into an area that's contaminated, it might help to be able to clean the surfaces of things with concrobrium right away, and hopefully minimize the contamination. I've got a few other thoughts I'd like to share; I'll try to get back tomorrow.

    Wayne

    ETA Short Concrobrium Video
     
  12. slayadragon

    slayadragon Senior Member

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    This comment caught my attention because of the gallbladder issue.

    Many people with mold illness and/or ME/CFS have gall bladder problems and often "lose" their gallbladders. The specific stories that I've heard suggest that it's not due to stones, but to black "sludge" that collects in it. During the time I was first detoxing with csm, I had gallbladder heaviness/pain, and gallbladder cleanses (coffee enemas or ones with apple cider vinegar) caused lots of "squeaky" noises and release of a ton of black mucus.

    The other symptoms mentioned here (overweight and vision issues) are frequent mold illness symptoms. Carpal tunnel syndrome is mentioned occasionally.

    The other thing that caught my attention here is the raw foods diet. Erik's stepfather (a dentist who spent his career removing people's mercury fillings) has done a 100% raw foods diet for many years. Erik told me that if he were going to do something to try to decrease his reactivity, it likely would be to change to a raw foods diet (rather than using cholestyramine or similar things). The point of raw foods seems to be to decrease oxidative stress, which indeed (as I finally realized....it takes me a while) is the main issue with our disease.

    So I wonder about this doc's office manager. One frequent story that I'm seeing in terms of how people get real improvements in their health is that they move from a toxic environment to a better one and then do things to regain their health. A variety of things help, but this woman's success (regardless of what toxins/problems were making her sick to begin with) seems to be particularly remarkable.

    It would be interesting to hear more of her suggestions and story. Maybe we can learn from her.

    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?

    Best, Lisa
     
  13. floydguy

    floydguy Senior Member

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  14. jenbooks

    jenbooks Guest

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    I'm on iPhone so a quick post: Lisa, you are welcome to talk to her if you like. The gurus are Gabriel Cousens and Alyssa Cohen; the latter has excellent books and DVDs and a message board. I immersed myself in these in NYC.

    Generally my thoughts are: bone broths in the manner of Weston price, truly healthy grass fed true free range chickens and eggs from local farmers, wild fish are good foods. Cooked root veggies and other foods can make hearty soups. The problem is denatured poison food. Does one have to eat all raw? I don't know. But lots of raw would be healthy. It can be as simple as almond milk from Spanish raw almonds or a salad of avocado tomatoes sunflower sprouts red onion etc. One doesn't necessarily have to make gourmet stuff. She's probably right about dairy; goat cheese is a weakness of mine. Dairy even organic is very high in hormones bec the cows are kept pregnant most of the year. And heating milk destroys enzymes. Raw is better but risky (infection).

    I will try to go more raw anyway. The risks are if you are vegan you lack b12 and if you are a poor converter of carotene you lack vit a: both are impt.
     
  15. Dreambirdie

    Dreambirdie work in progress

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    Hello Wayne--

    I love my Aranizer and couldn't live without it! I'm glad you mentioned it.

    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!

    As for using the Aranizer on mold, it seems to work better on mildly moldly things, that have already dried out, though they will need sunning and washing afterwards. I didn't have any success using it in the room with the leaky window, which I recently remediated. Though what WAS interesting is that the swab that the mold inspectors took on the window, where I had placed the Aranizer for a whole month prior, came out negative. So my thought is the Aranizer killed the mold, but of course could not make the dead mold just vanish. The once moldy wood had to be ripped out and replaced.

    Contrary to your experience, Wayne, my Aranizer has been an amazing work horse. I have had it for over twenty years, and it only needed to be worked on once in all that time.

    The one warning I would add to anyone who gets one is to be careful how long you leave it running in an enclosed area. I had a friend who wanted to speed up the off-gasing on his newer-ish car, and so he left his Aranizer running inside it for 2 weeks while he was away. When he returned, he found the dashboard had begun to disintegrate into a powder. :eek:

    I just bought some Concrobium and will have to see how it does compared to bleach. It is definitely less toxic, but is it effective...?
     
  16. mojoey

    mojoey Senior Member

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    Thanks Wayne!

    I read this from Sam, the inventor of Concrobium, about the product on another site, for those that are wondering what it is (they really don't give more details than this):

     
  17. Dreambirdie

    Dreambirdie work in progress

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    The bone broths are awesome... really healing food. It's well worth it to invest in a good slow cooker and eat these broths regularly in winter. They will "beef up" your energy.

    I get grass fed beef knuckle bones and cook them in a slow cooker for at least 12 hours. Then I cool the brew in the fridge, skim off the the dense layer of fat, and add greens, jewel yams, onions, garlic and other spices to the broth. Yummy! Now I want some.

    You can do the same kind of thing with a free range chicken.... crack the bones before cooking the whole chicken over night, and make soup with it (as above with beef bones). I like to suck the marrow out of the chicken bones... which is something my grandmother used to do. I have a local source for these free range chickens... they are so much tastier than the store bought ones.

    As for eating raw... this is much easier to do when it's warm out. I eat more cooked food in winter, and a lot more raw food in warmer weather. Over the years I have come up with a few great smoothie recipes. My favorite being: 1 cucumber, 1 big dry farmed tomato and 1 small avocado with cayenne and salt to taste. It's a quick delicious meal.

    The raw dairy on the other hand is something I avoid. I got the WORST case of bacterial dysentery from eating raw goat cheese 2 years ago, at a local Weston Price group pot luck. I was doubled over with diarrhea and cramps for 2 weeks, ended up with severe dehydration as a result... and will never eat raw milk products again. You really need to have EXCELLENT HYGIENE when you process raw milk. Unless you do it yourself, or know and trust the person who is the source of the raw dairy, I would NOT recommend eating it.
     
    Xandoff likes this.
  18. soulfeast

    soulfeast Senior Member

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    The ERMI tests for DNA. I think this catches mold fragments as well. It does not test for mycotoxins. Mold spores settle in dust. They can feed off of it if the humidity is right for them.

    I do not know why Shoemaker puts so much stock in the ERMI but he goes to gret lengths to connect it to mold illness. You can see the video presentations he has regarding ERMI and connection to mold illness labs on his resource page.

    We had air samples and the inspector used a moisture meter. The moisture meter (infrared camera is better) detected moisture behind tile in shower. Then the inspector checked the air inside the wall cavity which showed elevated asper/pen, but no stachy.

    Molded materials after remediation showed the stachy growth. It is rare to find stachy airborne and in dust unless there has been a lot airborne to settle. Stachy is s sticky dense mold spore that does not take flight so readily.

    We later did find stachy in vacuum sample of carpet leading out of master bathroom after the remediation, which was properly (as can be) handled by locking the area off, using scrubbers, hepas, back flow of air. I dont know if the stachy was there all along, but doubt it.

    Post remediation 1 spore per cu meter was found in LR which is one level below master bath and I think this too was from remediation.

    I think most of our stachy stayed enclosed in the knee wall of the shower, which if so would mean the toxins, vocs, bacteria, endotoxins.. whatever else is in mold stew somehow escaped. I dont see how the spores were able to escape through the crack in the tile grout.

    Point being, stachy is not easily found but I would suspect it where there is sustained moisture.. the drywall behind the tile did not even get wet.. it was the facing of the kneewall. It was exposed to moisture when we took showers and somehow was able to use that moisture to continune to grow.


    From the book, Mold Warriors, these HLA types have 11 in them:

    11-7-52b (associated with macrons)
    11 or 12-3-52b ("dreaded" multisuseptable)

    If your numbers are correct, I dont see where the 8 comes in.

    VEGF is just one measure of several that Shoemaker recommends. I dont know of a specific connection between low or high VEGF and the DR11 un less Shoemaker has info he has not yet released. His newest PDF has been linked on this thread...

    My VEGF was in normal range and my EPO was elevated.. EPO will cause VEGF to rise. Usually EPO is triggered by high altitudes therefore less oxygen?

    In Mold Warriors, Shoemaker does implicate c3a with recent mold exposure. Im confused on this one because its seems her focused more on c4a in later presentations.. perhaps to do with chronic mold exposure but Im not too sure about that. He uses c4a which is highly correlated with TGF-b1 to retest for mold exposure.. you take csm then wait a week after the round and test c4a, if it is up you are still being effected by biotoxins in your environment. If it is down but up 4 weeks after stopping csm therapy then most likely due to a "living" source, meaning biological like lyme.

    Im curious now to go back and read his more current pdfs on c3a.
     
  19. soulfeast

    soulfeast Senior Member

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    From the book:

    Look at the Labcorp report. There are 5 categories of line entries: DRB1, DQ, DRB3, DRB4, and DRB5. Each individual will have two sets of three alleles, unless the DRB1 is 1, 8, or 10.

    Those patients will only have a DQ and will not have DRB 3,4 and 5.

    Each individual with a DBR 1 other than 1, 8 or 10 will have a DQ and one other allele from DRB 3,4 or 5.

    If you expect to find two entries in say DRB 3,4 or 5 but only find one, the patient in homozygous for that allele and only one allele will appear on the PCR.

    There is more. I dont know why this info is not on his website. Are you sure your DR 11 is not a DQ 11? Then it would make sense that you did not receieve your 3rd number.. though 11 is not listed in teh DQ numbers he refers to as meaning anything or not.. he does say DRB1-8 and DQ 3, 4, or 6 means "no recognized significance"
     
  20. soulfeast

    soulfeast Senior Member

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    FYI: Warnings on every mold illness list I have been on not to kill mold. You will break the spore into fragments that still contain the toxins and antigens that are still active.. ??? Then easier to breath in and infiltrate your belongings.

    I have heard this consistantly on different lists which disagree with each other further in details but agree on this one point. Dr Thrasher would be one who agrees with this.. dont kill the mold spores. I dont know what to make of it because I would like to do nothing more than kill the mold spores and make it all go away. They say.. of course removal.. but when cleaning items and area after removal, use soap and water or other products that do not kill mold.

    I would like to know if this matters if you are able to also wipe the fragments away and if the toxins in the fragments are more likely to denature or disentigrate naturally if in fragment form.

    I would also like to know if UV and ammonia will denature toxins. I am getting conflicting info on that. I dont think ozone has been reported to denature toxins after it kills the spores. If so, I would love to know.
     

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