Guest guest Posted May 22, 2004 Report Share Posted May 22, 2004 I've been amazed that I create so much anger in people for simply telling my story. " A legend in his own mind " . I'm a survivor of the Incline Village CFS epidemic as described in the book " Oslers Web " and " Living Hell " . I am one of the people used by Dr Cheney and Dr to define the parameters of CFS. I have been retested eleven years after the epidemic and still declared to be " The Perfect Case of CFS " and was told " You have turned into a Universal Reactor and are at a point where most people with CFS commit suicide " . But I discovered the " Mycotoxin Connection " and left the ampligen program to pursue a protocol of extreme avoidance. I thought that if I could simply demonstrate that I was an Incline Village CFS survivor and was in the ampligen program, and then show pictures of the five times that I've climbed Mt. Whitney, no words on my part would be necessary for someone to grasp the idea that I may " Be on to something " . Instead I find that people simply shut off their minds and refuse to consider something that challenges their reality. So despite the objective evidence, I suppose my story is destined to remain a myth and a legend which exists only in my own mind. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2004 Report Share Posted May 22, 2004 From: erik_johnson_96140 Sent: Saturday, May 22, 2004 9:53 AM Subject: [] The Legend of So despite the objective evidence, I suppose my story is destined to remain a myth and a legend which exists only in my own mind. * Ok, I believe. What exactly did you do to cure yourself? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2004 Report Share Posted May 22, 2004 From: erik_johnson_96140 Sent: Saturday, May 22, 2004 9:53 AM Subject: [] The Legend of So despite the objective evidence, I suppose my story is destined to remain a myth and a legend which exists only in my own mind. * Ok, I believe. What exactly did you do to cure yourself? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 I got a sample of a Stachy contaminated item and wrapped it up in a Hepa filter, laid it on the floor, covered it with six layers of blankets and tried to sleep on it. I did this to familiarize myself with the mycotoxin response so I could learn to recognize extremely subtle exposures. Naturally I would get up after various periods of time absolutely fighting for my life. It is not a technique I can recommend, but since no doctors would help me and everybody told me that mold reactivity was impossible, I was forced to find my own way. But by learning to recognize " mold hits " before they turned into an immune devastating " mold slam " , I was able to consistently perceive, avoid and decontaminate from exposures before my immune response was forced into a damaging upregulated state. When I proposed this I had turned into a Universal Reactor and was being tortured by almost everything except when I was in the desert. But I remembered that my illness had started with mold reactivity and chose a " leap of faith " that this response had a specificity to it which was more important the the responses that followed later. I made no special effort to avoid anything except that feeling of exposure to mold. The response was a miracle beyond anything I dared hope for. I know that the first thing people say to me is " We're all different so don't try to impose your situation on anyone else " . There are two reasons why I try to do so. 1. I was used as a prototypical case of CFS for defining the parameters of the illness during the Incline Village epidemic. So when people complain of CFS, they are literally comparing their symptoms to me. 2. As my reactivity grew less, my sensitivity or ability to perceive grew more intense. And when I went to CFS groups to tell my story, I could feel " mold hits " consistently on almost everyones clothing. They were virtually complaining of all the clues that led me to my conclusions yet they would consistently discard my story and reject my proposal. I even led people in and out of mold exposures and they would fall apart. I would ask them " What do you think that was? " and they would either say " It's just me " or " Just a reaction to chemicals " even though the places I would take them had little potential for containing chemicals and visible mold. Some even said " You almost had me convinced because I could feel it for myself, but then I went to my doctor and he told me that this is impossible. " I didn't expect a consistent and concerted effort to avoid mold alone to resolve my chemical sensitivities. But I have taught others to avoid mold in a similar concerted manner and they have had the same result. I contacted the subject of Rosenbaums book " Solving the Puzzle of CFS " and told him that his and his families chemical sensitivity complaints described in the book sounded more like a response to mycotoxins. The response was startling, the guy almost yelled at me " That's what I told Dr Rosenbaum but he changed my story to fit his theory " . Somebody should really call up to find out about my claim that Duehring changed her focus to mold at the very end. herself told me that in 1999, and though she doesn't understand the significance, I think that the fact that did finally see the mycotoxin connection is of extreme importance. - " The Legend " (Sheesh!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 From: erik_johnson_96140 Sent: Sunday, May 23, 2004 9:38 AM Subject: [] Re: The Legend of I made no special effort to avoid anything except that feeling of exposure to mold. <snip> I didn't expect a consistent and concerted effort to avoid mold alone to resolve my chemical sensitivities. But I have taught others to avoid mold in a similar concerted manner and they have had the same result. * Did you change your place of residence? Do you think that some parts of North America are much safer than others, or are more local differences more important. Thanks for the detailed response. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 I've had to move many times - forced out by ambient levels of mycotoxins in certain areas. The IAQ " mold experts " are hampered by the concept that this is strictly and indoor air quality problem. To a mold responder, this is an " everywhere " problem. To avoid a level of inflammatory response that creates progressive symptoms and immunological damage, choices must be made on a moment by moment basis using perception of exposure just as it is in all cases of MCS. The only difference between what I do and MCSers is that I found specific mycotoxins were my primary trigger and that my other sensitivities were from " spreading " . At the time I developed this " leaf bag and Hepa filter " lifestyle, I had just been told that I was a perfect candidate for ampligen but that it was so expensive that it may as well have been on the Moon. With nothing else left to try, I proposed the extreme mycotoxin avoidance strategy. I was only trying to stay alive until Dr figured out a cheaper way to treat CFS. I didn't expect the improvement I got. As Jonathon notes, this protocol has its downsides - to put it mildly. This was an act of total desperation and this lifestyle would be considered devastating in and of itself to anyone who isn't fighting for their very lives. Unfortunately. Many of you are. Even though some areas have a higher density of spore plumes, the critical thing is to live between them. It is possible to live in close proximity to powerful plumes just as long as you aren't sleeping in it or cross contaminating your environment by carrying spores home from passing through the plumes. People who don't understand the principles of cross contamination require a huge mold free area to gain the benefits of mycotoxin avoidance. A person who is highly skilled in controlling cross contamination can survive in a fairly dense scattering of plumes. If I were to apply my situation to the MCSers who live in special communities, their measures would not work for me and my chemical sensitivities would not have abated. Just moving out of mold wasn't remotely sufficient to address my problems. For years I have told people that I am practicing mold avoidance and they instantly dismiss my story because they sprayed bleach on the mold in their shower or moved from one house to another and that should have been sufficient to rule out mold as a " trigger " . Not even close! I'm talking about a level of sensitivity in which I have to test new furniture for a response because many warehouses are moldy. People who have survived a mold exposure and realize that they are responsive to their possessions rarely stop to think that this may have happened to " new " clothing, food, furniture or virtually anything else that stored or manufactured in an area that had a similar level of mycotoxin contamination to the house that drove them out. No expert can accompany you and " test " or protect you from the inflammatory response from a bombardment of " mold hits " from the endless number of contaminated items, buildings and spore plumes that you know full well are capable of causing a response. If an item from the " bad " house can still " hit " you, so can anything that came from a similar environment. Only learning to recognize the subtle symptoms of exposure and initiating an avoidance and decontamination protocol BEFORE it turns into a massive immunological response can give you the respite to abate severe symptoms. You must become " your own expert " . - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 -- Thanks for your time here -- this sure sounds about right, relative to what I've been experiencing since my first full detox in December. I'm finding that about 70% of residential buildings don't work for me anymore. The complication is that, as I've mentioned previously, I feel that it takes me 36 hours to realize an exposure. As for going to the grocery store, etc, I suppose this is kind of a crap shoot. Can you describe your early warning symptoms more subjectively? I can go to some environments, like a bookstore, and get spaced out in 10 minutes. To describe, this feels like a pane of glass is surrounding me -- " soft " perceptions, fuzzy thinking, balance issues. Should I be changing clothes after these events? Oh, I forgot to mention Handi-Wipes and Reverse Osmosis water in my lifestyle ..... > I've had to move many times - forced out by ambient levels of > mycotoxins in certain areas. > The IAQ " mold experts " are hampered by the concept that this is > strictly and indoor air quality problem. To a mold responder, this > is an " everywhere " problem. > To avoid a level of inflammatory response that creates progressive > symptoms and immunological damage, choices must be made on a moment > by moment basis using perception of exposure just as it is in all > cases of MCS. The only difference between what I do and MCSers is > that I found specific mycotoxins were my primary trigger and that my > other sensitivities were from " spreading " . > At the time I developed this " leaf bag and Hepa filter " lifestyle, I > had just been told that I was a perfect candidate for ampligen but > that it was so expensive that it may as well have been on the Moon. > With nothing else left to try, I proposed the extreme mycotoxin > avoidance strategy. I was only trying to stay alive until Dr > figured out a cheaper way to treat CFS. > I didn't expect the improvement I got. > As Jonathon notes, this protocol has its downsides - to put it mildly. > This was an act of total desperation and this lifestyle would be > considered devastating in and of itself to anyone who isn't fighting > for their very lives. > Unfortunately. Many of you are. > Even though some areas have a higher density of spore plumes, the > critical thing is to live between them. It is possible to live in > close proximity to powerful plumes just as long as you aren't > sleeping in it or cross contaminating your environment by carrying > spores home from passing through the plumes. > People who don't understand the principles of cross contamination > require a huge mold free area to gain the benefits of mycotoxin > avoidance. > A person who is highly skilled in controlling cross contamination can > survive in a fairly dense scattering of plumes. > If I were to apply my situation to the MCSers who live in special > communities, their measures would not work for me and my chemical > sensitivities would not have abated. > Just moving out of mold wasn't remotely sufficient to address my > problems. For years I have told people that I am practicing mold > avoidance and they instantly dismiss my story because they sprayed > bleach on the mold in their shower or moved from one house to another > and that should have been sufficient to rule out mold as a " trigger " . > Not even close! > I'm talking about a level of sensitivity in which I have to test new > furniture for a response because many warehouses are moldy. > People who have survived a mold exposure and realize that they are > responsive to their possessions rarely stop to think that this may > have happened to " new " clothing, food, furniture or virtually > anything else that stored or manufactured in an area that had a > similar level of mycotoxin contamination to the house that drove them > out. > No expert can accompany you and " test " or protect you from the > inflammatory response from a bombardment of " mold hits " from the > endless number of contaminated items, buildings and spore plumes that > you know full well are capable of causing a response. > If an item from the " bad " house can still " hit " you, so can anything > that came from a similar environment. > Only learning to recognize the subtle symptoms of exposure and > initiating an avoidance and decontamination protocol BEFORE it turns > into a massive immunological response can give you the respite to > abate severe symptoms. > You must become " your own expert " . > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 To support on the issue of pre-contamination, I also want to add that Ive found, through perception of symptoms related to exposure, that pillows that I have bought have on occasion been pre- contaminated, as well as clothing items The current problem I am dealing with is that it seems that my washing machine appears to have become contaminated, in that every item of clothing that comes out of it after washing gives me symptoms, when it used to be the opposite, the machine would decontaminate moldy clothing. > I've had to move many times - forced out by ambient levels of > mycotoxins in certain areas. > The IAQ " mold experts " are hampered by the concept that this is > strictly and indoor air quality problem. To a mold responder, this > is an " everywhere " problem. > To avoid a level of inflammatory response that creates progressive > symptoms and immunological damage, choices must be made on a moment > by moment basis using perception of exposure just as it is in all > cases of MCS. The only difference between what I do and MCSers is > that I found specific mycotoxins were my primary trigger and that my > other sensitivities were from " spreading " . > At the time I developed this " leaf bag and Hepa filter " lifestyle, I > had just been told that I was a perfect candidate for ampligen but > that it was so expensive that it may as well have been on the Moon. > With nothing else left to try, I proposed the extreme mycotoxin > avoidance strategy. I was only trying to stay alive until Dr > figured out a cheaper way to treat CFS. > I didn't expect the improvement I got. > As Jonathon notes, this protocol has its downsides - to put it mildly. > This was an act of total desperation and this lifestyle would be > considered devastating in and of itself to anyone who isn't fighting > for their very lives. > Unfortunately. Many of you are. > Even though some areas have a higher density of spore plumes, the > critical thing is to live between them. It is possible to live in > close proximity to powerful plumes just as long as you aren't > sleeping in it or cross contaminating your environment by carrying > spores home from passing through the plumes. > People who don't understand the principles of cross contamination > require a huge mold free area to gain the benefits of mycotoxin > avoidance. > A person who is highly skilled in controlling cross contamination can > survive in a fairly dense scattering of plumes. > If I were to apply my situation to the MCSers who live in special > communities, their measures would not work for me and my chemical > sensitivities would not have abated. > Just moving out of mold wasn't remotely sufficient to address my > problems. For years I have told people that I am practicing mold > avoidance and they instantly dismiss my story because they sprayed > bleach on the mold in their shower or moved from one house to another > and that should have been sufficient to rule out mold as a " trigger " . > Not even close! > I'm talking about a level of sensitivity in which I have to test new > furniture for a response because many warehouses are moldy. > People who have survived a mold exposure and realize that they are > responsive to their possessions rarely stop to think that this may > have happened to " new " clothing, food, furniture or virtually > anything else that stored or manufactured in an area that had a > similar level of mycotoxin contamination to the house that drove them > out. > No expert can accompany you and " test " or protect you from the > inflammatory response from a bombardment of " mold hits " from the > endless number of contaminated items, buildings and spore plumes that > you know full well are capable of causing a response. > If an item from the " bad " house can still " hit " you, so can anything > that came from a similar environment. > Only learning to recognize the subtle symptoms of exposure and > initiating an avoidance and decontamination protocol BEFORE it turns > into a massive immunological response can give you the respite to > abate severe symptoms. > You must become " your own expert " . > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 In a message dated 5/24/2004 3:15:57 PM Pacific Daylight Time, jligh000@... writes: The current problem I am dealing with is that it seems that my washing machine appears to have become contaminated, in that every item of clothing that comes out of it after washing gives me symptoms, when it used to be the opposite, the machine would decontaminate moldy clothing. I have read that borax is a good mold killer - any thoughts out there about that? At Walmart, you can buy the old " 20 Mule Team Borax " and add it to laundry - no perfumes in it. I don't know if it helps, but it might. Or running bleach through it (but I can't stand the smell). What does anyone else think? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 > > > The title of this post: " The Legend of " was a reference to > comments of derision about my concerted strategy of extreme mold > avoidance. > Yet these details mean a great deal to me. > - > /message/20507 > In reference to the legend of , I would like to take the opportunity to thank you personally for all the help your posts have given me. I have and continue to suffer from this illness, but without your input, I would see no way out. My personal mantra is " is allways right " Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 is in his own head. he could just as easily help on this board with out acting like a know it all. we all know the importance of advoidance, thats getting old. I dont hang out with people that have eriks attitude. I find it rude. some of you dont know what e-mails erik sends out to some on this board. uncalled for. he is not god and he needs to get over himself. please dont encurage his arrogance. > > > > > > The title of this post: " The Legend of " was a reference to > > comments of derision about my concerted strategy of extreme mold > > avoidance. > > Yet these details mean a great deal to me. > > - > > /message/20507 > > > In reference to the legend of , I would like to take the > opportunity to thank you personally for all the help your posts have > given me. I have and continue to suffer from this illness, but without > your input, I would see no way out. My personal mantra is " is > allways right " > Thanks again, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 " carondeen " <kdeanstudios@...> wrote: > In reference to the legend of , I would like to take the opportunity to thank you personally for all the help your posts have given me. I have and continue to suffer from this illness, but without your input, I would see no way out. My personal mantra is " is allways right " > Thanks again, Thank you, . I encourage people to regard the concepts I propose as " testable " . I have no credentials other than my own experience and I believe that people should always carefully examine my statements to determine if they " fit the facts " , and reach their conclusions according the inherent value of the assertion itself. Never trust anything I say because I might have been right in the past. Concepts need to be challenged according to their content rather than by the perceived character of the proponent. If anyone finds a statement or concept that I have proposed that was inappropriate, inaccurate or incongruent, they would be doing me a huge favor by bringing it to my attention, so I can try to make it right. With appreciation for your kind words. - Quote Link to comment Share on other sites More sharing options...
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