Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 > > But I had noticed that I didn't have a consistent response to all > Eucalyptus, which raised an inconsistency. > I simply got a sample of the offending mold, Stachybotrys, tested myself - > and recognized the familiar " hits " The woman next door, who lives under the huge eucalypyus grove has had fibromalgia since she's lived there. More questions: Did you scrape the mold off the base of the trees and just sniff it? I googled and read that there was a new type of stachybotrys mold discovered in eucalyptus leaf litter. I'm trying to find the publication. It was published in 1986. Since those trees have been here for over a hundred years, I guess it's no surprise that I'd get " hits " off off certain wet lawns around here too. There's one in particualr where I need to walk across the street -- can't even breathe.. Here's the publication: Dorai, M. and B. P. R. Vittal (1986). A new Stachybotrys from Eucalyptus litter. Transactions Of The British Mycological Society 87(4): 642-644. It looks like there might be a couple different types of stachymold involved... as if one mutated (?) > > A " Universal Reactor " is an victim of chemical sensititivies who is > assaulted by so many susceptibilities that continued survival outside of a > bubble is almost impossible. I was amazed when mold avoidance alone abated > my other reactivities. Now see, my CFIDs started when I had to go back to working in the small windowless computer graphics room upstairs at KRON-TV-- you know, Van Ness and Geary in San Francisco. Downtown so not too many trees around there but now that I think of it there may have been some euc's.. I also had just gotten married and so moved into a brand new townhouse on Russian Hill. So all new carpets and resinous cabinetry off-gassing....Hard to say which was to plan or maybe both, the universal reactor-type theory. Anyway I went from very healthy to very sick within months of being married... I know... I know.... I wonder too :-) > Some reject this type of approach with disdain " That's not a cure " . No, it > is not. But instead of lying flat on my back praying for death, I've spent > years out having adventures and wondering why people would make the choice > to remain completely out of control of their illness when they complain so > much that they " would do anything " . I'm a very active person whose been sick, on and off for 18 years. I will move anywhere and do anything to feel good again but since I've been clobbered for so much longer with this problem I wonder if it would clear up as quickly as it did for you... I also have the messed up guts due to celiac and also still have fish biotoxins floating around in my tissues due to the recent fish poisoning ( BTW, I just read the gene chart and noticed that I also have the HLA DQ8 fish toxin gene too... :-/ How long did it take for you to find some solid good health -- you know, between the time you realized what the problem was and moved, to when you felt good again? I don''t travel much because I'm so tired and it's so hard to get no grains/no dairy and my lowered resistence makes me susceptible to hotel room fumes and everything else you guys are talking about.. the universal reactor stuff... If I thought I had a shot at getting past the super sensitivity, I'd move out for a trail.. Do you think a month in Lake Tahoe or Central Oregon would work? Two months? I'd keep doing the cholystyramine for toxins.. I guess I'd see if I just started to feel better. Sorry for all these questions and I'm not very organized. This is just a whole new angle to look at and I have just too many weird coincidences... Thanks to and everyone here! ~Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 > > Thanks. I don't want people to confuse me with those damned Swedes! > That would be simply Ludefisk! hee hee. The Eucalyptus grove where I first said " Hey. What the heck is different > about THIS grove? " was at the end of Lincoln Ave in San , not too far > from the " Lloyd WRONG " Civic Center. hmmm.. That's about 15 miles from me as you know.. ~robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 robin ann wrote: > How long did it take for you to find some solid good health -- you know, between the time you realized what the problem was and moved, to when you felt good again? > If I thought I had a shot at getting past the super sensitivity, I'd move out for a trail.. Do you think a month in Lake Tahoe or Central Oregon would work? > ~Robin Moving never did all that much for me. I had moved many times and even though it made a slight difference - just enough to let me know " the effect " existed differentially in various places. As I told Dr Cheney at the begining of the Incline epidemic " I have an inexorably increasing reactivity to mold that grows progressively worse no matter where I live or how well I take care of myself " . I employed various degrees of avoidance with various degrees of success starting two years after the epidemic. It was compelling, and very important to me, but not really definitive enough to get any doctor to listen to me. But then I moved into a place of much higher mold exposure in '94 and completely relapsed to a point comparable to illness onset - winding up in the ampligen program. But there was one small catch. There was no way I could afford ampligen. I didn't qualify for the funded Hemispherx study because I had already initiated a mycotoxin avoidance protocol and was regaining my ability to walk and was turned down by Hemispherx because I was " still ambulatory " . As Dr said, I really was at a point where all I wanted to was give up and have this whole thing be over. But I had one last thing to try, and that was to concentrated on exploiting the differential of this " effect " that I had been blaming on mold. I wanted to construct an avoidance protocol that would bring my exposure down as much or lower than the degree that enabled a certain level of recovery during the summer and see if I could maximize the benefit of decreased exposure. This is the specific strategy that all doctors refused to help me with and flat out told me it wouldn't work. But with no other options, I did it anyway. Within six months, I went from a level of illness that qualified me to be in the ampligen program and called " severe " by Dr - to mountain climbing again. I had acompanied many other CFSers into moldy places and seen the effect it had on them. I wasn't alone by any means. But it was my hypersensitivity that allowed me to identify the " trigger " . Others didn't share this and even though they could vaguely feel something was wrong, they couldn't pin it down. Finding this same type of reactivity in others and identifying Stachy at the source of so many CFS clusters seemed enough of a commonality that I believed there would no longer be any difficulty in pursuading a doctor or researcher to investigate " the mycotoxin connection " . I couldn't have been more wrong. CFSers reeking with mold which they cannot identify and CFS doctors and researchers literally worked harder to dismiss this " clue " than denialist doctors work to prove that CFS does not exist. Considering that this " effect " has meant a great deal to me, I find it incredible that people would make such efforts to turn away from a very promising lead. I feel that studying the dismissal manifested by illness sufferers may hold the reason why denialists work so hard to maintain their conviction that CFS cannot be real. My experience is often misconstrued as claiming that " mold is the cause of CFS " . All I have said is that this appears to be a common denominator of response in CFS that should be investigated. As I described in Mold Warriors, this response is similar to peanut allergies in that the amounts involved are so slight, that cross contamination of possessions and objects by mycotoxins is more than enough to keep the immune system upregulated. Moving locations is not sufficient unless you are incredible lucky. Some people have indeed experienced such luck, but then their luck ran out at some point. I have my own curiousity about the circumstances under which these relapses occur. Annettes story about unpacking possessions from a moldy flat and experiencing a degree of exacerbation is a concept I am quite familiar with and have heard from many people. I can't wait to find out what " causes " CFS and a cure is found. Until then, I practice extreme mycotoxin avoidance. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 I have the mold gene and long arm span. But I checked a couple healthy people and they did too. Anyway, I really don't think anyone should use smell or sight to determine if they are around mold toxins. I never saw any mold ever where I was living, it was never musty, it was a dry climate, etc. I can throw some pots with clay that has absolutely no visible mold or smell and it still makes me sick. Shoemaker doesn't have a lot of faith in remediation. As he says, millions of spores with lots of toxins had a chance to get all over your house before you replaced the moldy stuff, and that's assuming you actually got all the moldy stuff which you normally don't because so much is hidden. However open windows and moving air is supposed to be a good thing to keep mold from growing, but the breezes also cause the spores and toxins to be more blown around.. I don't think a mold can die from heat, I think they love heat. As long as there is moisture. And remember it's not really the mold that is a problem, it is the toxins. And those are chemicals that are there forever. Shoemaker's experience is that if you have a mold gene, you can never live in a house that once had mold, even once it has been cleaned up. And remember, he believes is an anomaly in being able to stay well by " mold avoidance. " Of course before I went to the trouble to move, I would try CSM and see if it makes you better. I'm wrestling with a simialr puzzle. I recently learned all about snow mold. On the one hand, I've lived in Reno for a year now and we've had snow about half the time (and the snow lives even when there is no snow). And I've been well except a few days. So I wonder if the days I am not well have something to do with the snow mold, but then I've been so well most of the days. Outdoor molds don't typically put off mold toxins to the degree indoor molds do. But it sure would be nice if there were some meter that could read the mold toxin levels. Doris ----- Original Message ----- From: robin ann See, mold avoidance doesn't seem to be the simple answer for me.. at least not yet. Or maybe I have mold in my house. My house used to be a flat roof structure but that roof failed, flooded and soaked all the insulation in the drywall. I thought we replaced most of it but maybe there's a problem there.. The crawl space under the house is wet year round; We're at the base of a hill :-/ I'm going to have someone look at it. You don't happen to know of a good mold inspection/remediation company around here -- Northern California? I know my house sounds like a recipe for mold, but the house gets so much fresh air and I sleep with the windows open. I also have Austin air cleaners in many of the rooms, including the bedroom of course. In the summer, it gets so incredibly hot under the roof I think that would kill ~any~ mold that might be growing in the old flat roof that's still under the new pitched roof... I also don't smell any mold in my house. However........ if I even get a tiny whiff of ANY kind of mold outside or, well, anywhere, it really knocks me for a loop. I mean it's like a direct hit to the brain, bam!, so I know that something's going on there... I was surprised to read about the case of the other woman, , who happened to be so naturally flexible and whose " wingspan " is wider than she was tall. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Hi , I thought that part of your mold avoidance was living or at least spending a LOT of time at high altitudes? BTW I read that anything over 5280 feet is " high altitude " . I thought that higher altitudes increased a person's VEGF or erythropoietin -- in fact that is what kept the five American Olympic skiers from competing at the games in the beginning -- they had too high VEGF -- producing too many red blood cells hence giving more stamina... And if you're saying that you didn't move, what would you do if you lived right next door to a moldy Eucalyptus grove like I do? I sleep with open windows on the side of the house with the Eucalyptus tress towering over. I slept with the windows closed tight last night and an air cleaner going and woke up far more refreshed. I thought of a reason your mold problems all came back hard in 1994 -- that was the year of El Nino -- huge rains and flooding after 7 years of drought. The drought was probably helpful to your condition... For me, I think that's what made me able to tolerate the mold gradually; we moved here during the drought and got used to the mold little by little. Last year was not only a particularly rainy year but it was a cool wet summer by Bay Area standards and maybe that's why I'm feeling so bad. The fish poisoning in September is probably part of it too... So I was toying with the idea of finding a, mold-free place and spending a few weeks up at Homewood, Lake Tahoe area to see if maybe the elevation and avoidance of my neighbors' huge eucalyptus trees made any difference.. You think I'd have the same problems at Lake Tahoe? The other problem with my breathing that eucalyptus stuff in the air and soil for 10+ years is that I've grown used to it and can't oinpoint it... I can't tell if it's bad or good -- it's so pervasive. I guess I'm wondering how you can avoid mold living in the SF Bay Area... Where do you live now? Oh, also, where do I scrape on the tree to get the best mold sample? Thanks. And when you say you avoid mold, that must mean that you get some occasional exposure because you have to get a reaction to it in order to know it's there, right? Do you still take cholystyramine? I'm sorry if you already mentioned that... Also, is it possible to take erythropoietin as a supplement? Thanks! ~Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 > > I have the mold gene and long arm span. But I checked a couple healthy > people and they did too. Good!!! :-) Anyway, I really don't think anyone should use smell or sight to determine > if they are around mold toxins. I never saw any mold ever where I was > living, it was never musty, it was a dry climate, etc. I can throw some > pots with clay that has absolutely no visible mold or smell and it still > makes me sick. That's what I'm afraid of. I notice it only AFTER it's done the damage. Of course before I went to the trouble to move, I would try CSM and see if > it makes you better. I'm trying it and it's helping a little. I can't completely tell because I also have a candida problem (and thrush) from general dysbiosis -- the Scombroid Fish Poisoning in September really thrashed my guts, my whole system. I think that's what set the whole mold thing back into motion. As if it's all cumulative... I'm wrestling with a simialr puzzle. I recently learned all about snow > mold. On the one hand, I've lived in Reno for a year now and we've had snow > about half the time (and the snow lives even when there is no snow). And > I've been well except a few days. So I wonder if the days I am not well have > something to do with the snow mold, but then I've been so well most of the > days. Outdoor molds don't typically put off mold toxins to the degree > indoor molds do. But it sure would be nice if there were some meter that > could read the mold toxin levels. Oh dear! Snow mold? Maybe it is time for the bubble... :-) That reminds me, I bought an N95 mask thinking that might help when I'm in a particularly moldy time like right now when it's been raining so much and I want to walk my dog and now the wind is blowing eucalyptus flowers and leaves all over. My deck looks like it's covered with snow but it's actually Eucalyptus flowers.. Sheesh... ~Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 I just realized what you meant about moving, . The more I got to thinking about moving up to Tahoe the more I remembered that, duh!, the indoor mold up there has got to be screamin'... Those houses are clamped shut all winter and get humid... Maybe the desert... or maybe just another place in Sonoma County that doesn't have quite the mold and eucalyptus exposure as this house that was flooded in 1994... So as you said, getting up there in really pristine conditions is the way that helped you get reset, rebooted :-) Altitude + lack of indoor/outdoor molds.. Unfortunately I also need a big kitchen in which to cook gluten and dairy free meals.. a lot of fresh vegeatbles on hand etc.. just thinking out loud now.. Also, I've not been involved in CFS support groups and so on but my sense, personally, is that this is, in my case, an environmental exposure problem.. The unusual toxicity problems, reactions and sensitivities all just smack pf exposure to me. But maybe my symptoms and sense of the thing are different. ~Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 On Feb 14, 2006, at 9:28 PM, robin ann wrote: > I just realized what you meant about moving, . The more I got to > thinking about moving up to Tahoe the more I remembered that, duh!, > the > indoor mold up there has got to be screamin'... Those houses are > clamped > shut all winter and get humid... > > Maybe the desert... or maybe just another place in Sonoma County that > doesn't have quite the mold and eucalyptus exposure as this house > that was > flooded in 1994... Go south or east of Tahoe, down into Reno, Carson City, Minden, or even as far south as my own hometown, Bishop. It's all very arid there -- bitter cold dry winters, hot dry summers, and lovely climate for terrific gardens if you've got the water. Overall good quality of life; one-day access to doctors in LA and Reno (if you're willing to drive a few hours), and the property values aren't too bad, either. And, God, it's some of the prettiest country anywhere. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 I *love* that area.. I used to drive out 88 over down the King's Grade (I think it was called) into Minden and Gardnerville... Great hot springs at Genoa.. So you guys have good natural food type stores out here? :-) Anyone here familiar with the Weston Price group... y'know the WAPF and all that? ~Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 On Feb 14, 2006, at 9:56 PM, robin ann wrote: > I *love* that area.. I used to drive out 88 over down the King's > Grade (I > think it was called) into Minden and Gardnerville... Great hot > springs at > Genoa.. That would be Kingsbury Grade. > > So you guys have good natural food type stores out here? :-) Anyone > here > familiar with the Weston Price group... y'know the WAPF and all that? There's a Wild Oats in Reno, on the south edge of town past the Atlantis on Virginia. Might be a Whole Foods there by now, too; would know. You can find decent organics at the Safeway in Mammoth; and I imagine if Bishop doesn't have a good source, it will soon. In the summer, it's easy enough to come by homegrown: it's the kind of low-key rural region where you have to be careful if you leave your car unlocked downtown, because people will leave unwanted tomatoes and zucchini in your back seat while you're not looking. The Genoa springs are nice, as are the ones (Grover) up on Monitor Pass out of Markleeville. Down around Mammoth and on into Bishop, there are lots of little undeveloped springs, along with two developed ones with full-sized pools -- Whitmore (near Mammoth Airport), and Keough (south of Bishop -- I learned to swim there). It's a little retro, but you can find plenty of interesting people -- plus amazing air, almost no mold, more stars than you've ever seen, and the best water in the world. (Crystal Geyser's main bottling plant is up that way.) All in all, a pretty healthy place -- as long as dust doesn't bother you, and you stay clear of the ticks. Geez. Just talking about it is making me homesick. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Well, if I move out there (which I just may!) you can come and visit me :-) I used to go to that valley with my sisters and a friend when we wanted to escape the interminable hipness of San Francisco. I mean, I moved from a trendy art studio South of Market to Petaluma ten years ago -- no stops even in Marin -- too suburban... Had to get that pick-up truck exurban thing going.. ~Robin On 2/14/06, Mercuria <mercuria@...> wrote: > > > On Feb 14, 2006, at 9:56 PM, robin ann wrote: > > > I *love* that area.. I used to drive out 88 over down the King's > > Grade (I > > think it was called) into Minden and Gardnerville... Great hot > > springs at > > Genoa.. > > That would be Kingsbury Grade. > > > > So you guys have good natural food type stores out here? :-) Anyone > > here > > familiar with the Weston Price group... y'know the WAPF and all that? > > There's a Wild Oats in Reno, on the south edge of town past the > Atlantis on Virginia. Might be a Whole Foods there by now, too; > would know. > > You can find decent organics at the Safeway in Mammoth; and I imagine > if Bishop doesn't have a good source, it will soon. In the summer, > it's easy enough to come by homegrown: it's the kind of low-key rural > region where you have to be careful if you leave your car unlocked > downtown, because people will leave unwanted tomatoes and zucchini in > your back seat while you're not looking. > > The Genoa springs are nice, as are the ones (Grover) up on Monitor > Pass out of Markleeville. Down around Mammoth and on into Bishop, > there are lots of little undeveloped springs, along with two > developed ones with full-sized pools -- Whitmore (near Mammoth > Airport), and Keough (south of Bishop -- I learned to swim there). > > It's a little retro, but you can find plenty of interesting people -- > plus amazing air, almost no mold, more stars than you've ever seen, > and the best water in the world. (Crystal Geyser's main bottling > plant is up that way.) All in all, a pretty healthy place -- as long > as dust doesn't bother you, and you stay clear of the ticks. > > Geez. Just talking about it is making me homesick. > > Sara > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 " Doris Brown " wrote And remember it's not really the mold that is a problem, it is the toxins. And those are chemicals that are there forever. Shoemaker's experience is that if you have a mold gene, you can never live in a house that once had mold, even once it has been cleaned up. And remember, he believes is an anomaly in being able to stay well by " mold avoidance. " > Doris That is why I call it " Mycotoxin Avoidance " and not " Mold Avoidance " . Dr Shoemaker pestered me for years to have the HLA tests done. I told him that my experience indicated that I possess the extreme susceptibility and that my words have inherent value. My personal experience, while suggestive as an example of what might be a factor in other CFSers symptoms - should not be the deciding factor in whether to apply protocols of avoidance. Just as people are being forced to make the self determination if they have CFS over the obstinence and disbelief of doctors, one should also be able to look at my story as being a prototype for CFS, hear my description of the mycotoxin connection, and make the decision whether to see if this is a factor in their case as well. After all the years of fighting with doctors, I trust my perceptions over any tests. No matter what my HLA is, if I test myself against molds and have this response, I must act in accordance with that level of reactivity, and I believed that others would look at this the same way. Dr Shoemaker has never seen anyone with the dreaded double mold gene recover to the extent that I described, and so he wrote in Mold Warriors that I probably had the genetic makeup that allows recovery through avoidance. But people inexplicably used that element of uncertainty as an excuse to avoid looking at my approach to " Just test yourself and find out " So Dr Shoemaker insisted that I have my HLA done. HLA DR by PCR 4-3-53 and 7-2-53. Mold susceptible and highly increased risk of CFS. Dr Shoemaker has confirmed that I am an anomaly in managing to take control over my illness by mold avoidance. It is as I have always said, that conventional views of mycotoxin exposure do not apply to someone at my level of reactivity and I was forced to adopt a lifestyle of " Extreme Avoidance " . The simple fact is that this is an anomaly because no one had tried it before. We are now finding that others who are " Extreme Responders " are also able to take advantage of " Extreme Avoidance " once they are taught how. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 robin ann wrote: I mean, I moved from a trendy art studio South of Market to Petaluma ten years ago -- no stops even in Marin -- too suburban... ~Robin I taught Hang Gliding for years out at Dillon Beach. On crappy days when we'd get 'rained out', we would retreat to a bar in Petaluma for a hot brandy before heading back south. The place was a slammer and I soon learned to stay away. Nobody understood why I just refused to go in and be sociable. Why I took a sudden dislike to the place. This is the lifestyle I've been forced to practice. Moment to moment, paying attention and never ignoring those particular places that have taught me through years of experience that the long term effects of these " So what? " exposures have effects on me that go far beyond what anyone believes can be possible. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 - how is one taught 'extreme avoidance' of mold toxins, esp if one reacts to EVERYTHING? (their reaction could be due to something else, and not a mold mycotoxin, if that person reacts to many things, like pollen, dust, etc). And mold, and their toxins, are EVERYWHERE (at least, they are where I live) - so extreme avoidance is like living in a bubble, and even that is no guarantee. How does a person identify the specific mold strains (and their toxins), if they are a universal reactor? (and the mold itself might not be visible for the person to see, even if the person could narrow down the reaction to a specific mold). That person could be reacting to any number of things, right? Forgive me if the answer to this has been in previous posts; if it has, it has not 'sunk into' my head yet-Les Re: They're not laughing anymore " Doris Brown " wrote And remember it's not really the mold that is a problem, it is the toxins. And those are chemicals that are there forever. Shoemaker's experience is that if you have a mold gene, you can never live in a house that once had mold, even once it has been cleaned up. And remember, he believes is an anomaly in being able to stay well by " mold avoidance. " > Doris That is why I call it " Mycotoxin Avoidance " and not " Mold Avoidance " . Dr Shoemaker pestered me for years to have the HLA tests done. I told him that my experience indicated that I possess the extreme susceptibility and that my words have inherent value. My personal experience, while suggestive as an example of what might be a factor in other CFSers symptoms - should not be the deciding factor in whether to apply protocols of avoidance. Just as people are being forced to make the self determination if they have CFS over the obstinence and disbelief of doctors, one should also be able to look at my story as being a prototype for CFS, hear my description of the mycotoxin connection, and make the decision whether to see if this is a factor in their case as well. After all the years of fighting with doctors, I trust my perceptions over any tests. No matter what my HLA is, if I test myself against molds and have this response, I must act in accordance with that level of reactivity, and I believed that others would look at this the same way. Dr Shoemaker has never seen anyone with the dreaded double mold gene recover to the extent that I described, and so he wrote in Mold Warriors that I probably had the genetic makeup that allows recovery through avoidance. But people inexplicably used that element of uncertainty as an excuse to avoid looking at my approach to " Just test yourself and find out " So Dr Shoemaker insisted that I have my HLA done. HLA DR by PCR 4-3-53 and 7-2-53. Mold susceptible and highly increased risk of CFS. Dr Shoemaker has confirmed that I am an anomaly in managing to take control over my illness by mold avoidance. It is as I have always said, that conventional views of mycotoxin exposure do not apply to someone at my level of reactivity and I was forced to adopt a lifestyle of " Extreme Avoidance " . The simple fact is that this is an anomaly because no one had tried it before. We are now finding that others who are " Extreme Responders " are also able to take advantage of " Extreme Avoidance " once they are taught how. - This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 " Masland " wrote: > > - how is one taught 'extreme avoidance' of mold toxins, esp if one reacts to EVERYTHING? (their reaction could be due to something else, and not a mold mycotoxin, if that person reacts to many things, like pollen, dust, etc). And mold, and their toxins, are EVERYWHERE (at least, they are where I live) - so extreme avoidance is like living in a bubble, and even that is no guarantee. > How does a person identify the specific mold strains (and their toxins), if they are a universal reactor? (and the mold itself might not be visible for the person to see, even if the person could narrow down the reaction to a specific mold). That person could be reacting to any number of things, right? > Forgive me if the answer to this has been in previous posts; if it has, it has not 'sunk into' my head yet-Les That's a great question. I wish I had a great answer. " Years of experience and a wild leap at following up on an observation " led me to an approach that is based upon my Hang Gliding experience. I detect mycotoxins in the same way a Hang Glider pilot detects thermals - by indirect indicators and associative responses. People would insist that a particular corner of a building would feel bad because of chemical exposure - " pesticides perhaps " . Maybe. But why would the pesticide be concentrated in ONE corner - IN the house - and in a house of identical materials and construction to others that don't have this effect? And why would the " pesticides " just happen to coincide with that strange discoloring that denotes past water damage? ...and seemingly not be present elsewhere? As Dr Shoemaker says in Mold Warriors, the concept was reinforced by years of experiences - all piling up and being constantly reconfirmed. When I was " Universal " , as Dr said, " life has pretty much become unbearable for you " . But this one mold reactivity stood out as a " specificity " and I just concentrated on it - and much to my amazement, the other sensitivities just faded away. Yes it is like living in a bubble. I would like nothing better than to have my old life back. Maybe someone will discover a Magic Bullet someday. Until then, this is the best bubble I could come up with - and it could be a heck of a lot worse. I know - because it was! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Thanks . FYI, as a result of this new information about mold I'm taking a month and going to live at a house in Taos, New Mexico. My friends there insist that the house is very safe for mold and it's at 6200 feet. There are very few mold problems in that region anyway, especially since they're going through a drought there. My doctor said it would be the only way I could know for sure if it was the giant eucalyptus trees we're living under and/or our previously flooded house that was causing the problems for me. What do you think? ~Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 " robin ann " wrote: > > Thanks . FYI, as a result of this new information about mold I'm taking a month and going to live at a house in Taos, New Mexico. My friends there insist that the house is very safe for mold and it's at 6200 feet. There are very few mold problems in that region anyway, especially since they're going through a drought there. > > My doctor said it would be the only way I could know for sure if it was the giant eucalyptus trees we're living under and/or our previously flooded house that was causing the problems for me. What do you think? > ~Robin Robin, consider carefully what Annette and I related about our illness exacerbation after NOTHING MORE than exposure to items brought out of an enviromnent which was contaminated with specific mycotoxins. I know people who tried just moving and didn't feel much different, but they took their pillows and clothing with them. This is the situation I described to Dr Cheney: " An inexorably increasing reactivity to mold that grows worse NO MATTER WHERE I LIVE or how well I take care of myself " . This reactivity is nothing like an allergy, and is so difficult to describe that I literally have to haul people in and out of exposures asking " Do you feel it NOW? " over and over. It really saves a lot of time- as in " Years of trying! " If you left behind any potentially contaminated possession, went to a place FREE of such contamination - and then, once having " got clear " of the response- upon returning to your eucalyptus grove/flooded house - you would be able to tell precisely where the exposure was coming from. " Get clear " then go the Truckee High School, where the " CFS cluster " that started the entire CFS phenomenon occurred - and then you will understand! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Okay. So maybe I fly out there and just take my laptop, some artist materials and a few clothes that I can wash as soon as I arrive? My little studio is fully furnished and has a nice kitchen. There's a Whole Foods store in Santa Fe so I can stick to my great Paleo diet -- very plain. It works so won't change a thing. I'm usually quite athletic and like to be outside so I plan to be walking quite a bit and practicing yoga.. This isn't as crazy and risky for me as you might think; when I started to look back and consider the times I've been well-er than others: the " well " times have been during the 7 year drought before my house flooded. Also I felt good whenever I went away from this area. For example, I went on a week-long yoga retreat last year, lived outdoors next to the ocean, and never felt better. I attributed it to 4 hours of yoga a day but now I am thinking it was the escape from my house. (!) After a week of handstands, within days of being back home I was sick and could barely walk the dog around the block. I've always looked at food as being the culprit due to my celiac diagnosis but I now have the simplest healthiest diet on the planet. No food products, all my stuff is made from scratch. I know my basic IgG food sensitivities and will receive the results of the York Labs test so I can see if I'm leaving anything out. I know I'm not sick with some " disease " and I know my organs and body are working great. It's time for me to consider environmental exposure. I have no children and am not consistently well enough to hold down a job -- what do I have to lose? My husband isn't thrilled about this and, frankly, I was devastated and crying buckets when it first occurred to me that this precious house I've been building up for so long might be to blame for my illness. But without health I am nothing. So I've decided to act. It's the only way I'll know for sure that something here might be to blame.. Or I can rule that out and look elsewhere. It makes sense that it is environmental because my body is in great shape and I always look super healthy on tests. This " illness " has always struck me as being an infection or outside cause but how can the doctors " see " that? When I entertained the idea that what I was feeling daily might be due to a continual slow poisoning, well, it makes a lot of sense. And it makes sense that the whole thing would be heightened when I added the accidental ingestion of fish toxin in September. That nearly killed me, it was a 911 call, but it also may be what ultimately saves me as I became so sick that I absolutely HAD to do something and so I went back into the detective role and found this doctor who uses Shoemaker's theories and then I stumbled on mold and then the eucalyptus angle... Even the CSM is working for me... yay. ~Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 And y'know, even if it doesn't work, it'll be a nice vacation. :-) ~Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2006 Report Share Posted February 19, 2006 > So Dr Shoemaker insisted that I have my > HLA done. HLA DR by PCR 4-3-53 and 7-2-53. Mold susceptible and highly > increased risk of CFS. Hi . I just noticed your HLA DR numbers and I assume that the second number in that string is the DQ gene number. So it looks to me like you have HLA DQ2 and that is one of the two proven celiac genes... The other celiac gene is DQ8. Although you may not have symtoms to wheat or other grains or beer, you most definitely have the gene that says something is haywire in your immune system having to do with gluten.. it may not have expressed itself yet or at least expressed it ina way that is noticeable to you.. Maybe I'm missing something but if you have HLA DQ2, you are most certainly susceptible to gluten intolerance. All my life I never had symptoms and then when I had all these other " insults " and, well, all hell broke loose.. ~robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Here's a recent article June 2005 on Cryptococcus gattii and Eucalyptus trees: I wonder if this mold is related to the CFS problem... " Cryptococcus gattii: An alert has been issued on the spreading of Cryptococcus gattii from the Vancouver Island to Mainland British Columbia (CBC News, Friday, June 03). What is this Cryptococcus gattii? It is a yeast-like fungus belonging to a group of fungi called Basidiomycetes (where mushrooms also belong!). This fungus was thought to have a restricted geographic distribution in the tropics and subtropics. It is has been reported in Australia, Papua New Guinea, parts of Africa, the Mediterranean region, India, south-east Asia, Mexico, Brazil, Paraguay and Southern California. The BC report was the first outside the tropics and subtropics. Cryptococcus gattii has an unusual association with trees. In Australia it is associated with some Eucalyptus trees. In British Columbia, however, Cryptococcus gattii has been recovered from multiple species of native trees, but not from any of the introduced Eucalyptus species. It has been isolated from soil, barks of trees and from the air. Unlike indoor moulds and yeasts, Cryptococcus gattii is a true pathogen and therefore can infect even healthy people. It has a preference for respiratory and nervous systems of humans and animals. Exposure to humans is mainly through inhalation of airborne spores into the lungs. " ~robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 I know, but its not that hard to eliminate gluten and enjoy life, if you have one of those genes. You can drink wine, and many other liquors, etc. By the way, which labs run the HLA tests? > > > > , you probably should stay away from grains anyway. > > Relatives of those with obvious celiac still have manifestations if > > you biopsy their guts, their villi are somewhat damaged. > > You might not have clinical symptoms but you are taking a risk imo. > > > > Yes, I agree, I've been bad about that! > As soon as I had the capacity to return to my former life in any > way - I went right back to those behaviors that people implicated as > being " causative " , despite the long history of these factors utterly > failing to result in CFS in any consistent or noticeable way in the > past. > But despite my lack of discipline, the anomaly remains that the > biotoxin exposure appeared to be the more critical factor. > I feel like someone who became hyper reactive to peanuts, but as we > all know - you can't induce this type of reactivity by " eating too > many peanuts " and as soon as I found the agent which modulated > that " downstream response " , I went right back to enjoying my peanut > butter sandwiches as I had always done before. > It's back to " the bridge analogy " , for as much as people tell me > not to neglect the " cars on the bridge " , I keep wanting to restore > as many " stresses and stressors " to my life as possible - for this > is the condition that others refer to as " normal life " . > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 > I know, but its not that hard to eliminate gluten and enjoy life, > if you have one of those genes. You can drink wine, and many other > liquors, etc. > > By the way, which labs run the HLA tests? I agree! Gluten-free isn't that hard once you get the hang of it. And, well, you feel so much better it's just unthinkable to go back for me.. If anyone wants to know more about it, we have a wonderful list over at GFCFNN, which stand for Gluten-free Casein-free Native Nutrition.. My " home " group :-) As for labs, the lab we all agree on over there is www.enterolabs.com You'll want to get the Gluten Sensitivity Stool and Gene Panel Complete which is $176.. What a lot of people do, though, is just stop eating gluten and see if you feel better. That's usually a pretty decent sign. And even if you're not totally " celiac " , stopping grains while suffering any sort of autoimmune illness is a pretty good idea. The gliadin protein in gluten (cereal grains) can be pretty hard to digest. I don't know if you've ever noticed it but livestock, even goats, will not eat wheat growing in the fields.. ~robin Ps, By the way I hope you noticed I changed this thread so it would reflect the more specific outdoor Eucalyptus mold. Part of the time I was following this thread I guess I wasn't sure which mold we were talking about; At one point I thought we were talking about a stachy mold. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Hi Jill- I had my HLA run by Prometheus in San Diego www.prometheuslabs.com. Medicare did pay for it because all the other tests including the scope biopsy did not definately confirm Celiac Disease. Therefore we had enough medical justification to run the HLA and have it covered. Kathy " jill1313 " <jenbooks13@ Thu Feb 23, 2006 1:42 pm ...> I know, but its not that hard to eliminate gluten and enjoy life, if you have one of those genes. You can drink wine, and many other liquors, etc. By the way, which labs run the HLA tests --------------------------------- Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and used cars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Thanx. In March I will finally see an immunologist who is on my HMO and I have heard is excellent and lyme friendly. I was supposed to see him in October but he had a foot operation, I rescheduled to early January but cancelled because of all the tooth and silicone stuff. I have heard he does specialized immune testing but I would like to see if I could get some of these covered by him. I doubt the SNP's can be covered but probably a case can be made for HLA subtypes, considering certain ones are more common in chronic lyme. And then, since an aunt had celiac sprue, one could test for those genes, too, I hope, on insurance. We'll see. > > Hi Jill- > > I had my HLA run by Prometheus in San Diego www.prometheuslabs.com. > > Medicare did pay for it because all the other tests including the scope biopsy did not definately confirm Celiac Disease. Therefore we had enough medical justification to run the HLA and have it covered. > > Kathy > > > " jill1313 " <jenbooks13@ > Thu Feb 23, 2006 1:42 pm ...> > I know, but its not that hard to eliminate gluten and enjoy life, if you have one of those genes. You can drink wine, and many other liquors, etc. > By the way, which labs run the HLA tests > > > --------------------------------- > Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and used cars. > > Quote Link to comment Share on other sites More sharing options...
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