Guest guest Posted August 21, 2010 Report Share Posted August 21, 2010 I have great respect for all the doctors and specialest that or trying to help us, even if I get pretty agervated with some of them sometimes. this is a multisymptom/multiorgan disease, to get help from regular doctors, you would have to go to maybe 20 different doctors to have each part of this addressed and they would have to communicate, and thats not going to happen. like Dr. Thrasher stated, the genetics just means you are more seceptable. no one is immune to toxins, theres several other bodily functions that come into play and just how badly contaminated and whats in the environment of that WDB all plays a roll. the younger and older can be more seceptable, people with pre-exsisting illnesses can be more seceptable. I think Shoemaker has done a great job in proveing and documenting the chronic inflammatory responce syndrome, CIRS-WDB , sometimes it takes along time to prove what happens to us from this illness when there are other factors involved against us. so you have to prove things by seeing many patients,running the same tests and documenting that and than writeing a report with the documentation that prove beyond doubt that this is caused by exposure to WDB. thats a lot of work but he did it. > > I wish I possessed the brain and ability to find the cause/treatment for these > symptoms. In all of the research I've currently done, what I've discovered is > that even well-regarded scientists disagree about lab tests and treatment > protocol. I worry about one person assuming to know what will work for EVERYONE > and diagnosing/determining the genetic strength or worth of another.  I actually > feel grateful now to have not read Shoemaker's book. I was going to last week, > but I read her Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2010 Report Share Posted August 21, 2010 Just for the record " the other Group " is severe reactor, not extreme > > Jeanine, > > Its not just in that group.. I didnt even know about that group when I met the man in the gro store or talked with an " extreme responder " on another board. > > Its part of the mold culture I think. (haha?) > > I agree the word " extreme " is alarming and you make good points, but you sound angry at where Tug is in this thinking(and me for that matter) and what they are thinking, processing. Does one need to choose groups? > > You all can certainly ban the word " extreme " from the group. Its one solution. > > Robin > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2010 Report Share Posted August 21, 2010 I totally agree. Again, I have respect for anyone who has tackled this huge issue, and I owe my life to folks like Dr. Shoemaker, Dr. Thrasher, Dr. Hope, Dr. Kilburn, Dr. Rea--and others. They truly hold the torch and provide a beacon of hope for what could be hopeless. It might just be my personality type, that I don't typically like a " doomsday " approach to healing/genetics. It's just like in my field of psychology. There are genetic predispositions to certain mental health disorders, but environment, lifestyle, personality type, and overall life management play a vital role in the eventual outcome. So many other issues play into whether one lives with mental illness or not, certainly having a genetic predisposition doesn't predict anything with certainly.  I would imagine the same holds true here. We can better be proactive and know where to begin in treatment/diagnosis. It never is a uni-dimensional approach. Again, I was just reacting to the adjectives used to describe a genetic issue, like " dreaded. "  For instance, I can't imagine reading a work by a psych. researcher who describes a patient as presenting with the " dreaded " [insert mental illness here] disposition toward what can be regarded as a tough mental illness. This is what I referred to in what could be regarded as being critical--not my intention at all.  Maybe it isn't even used in a scientific work at all by him; I am always learning--usually from mistakes I make. In this case, I should have just been quiet and sought out clarification regarding these issues and terms used by this doctor, whom I salute and who has been such a champion for us. I admire his willingness to be " out there " and to confront institutions and policies that others fear.  Foot taken out of mouth...I promise! sally ________________________________ From: osisposis <jeaninem660@...> Sent: Sat, August 21, 2010 4:42:10 PM Subject: [] Re: magic potion  I have great respect for all the doctors and specialest that or trying to help us, even if I get pretty agervated with some of them sometimes. this is a multisymptom/multiorgan disease, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2010 Report Share Posted August 21, 2010 Just like there is no " one size fits all " , there is also no " one protocal fits all. " When I was new to mold illness back in 2004 I thought I could just buy a book or see an enviromental doctor and all would be well. I have read many books and personally met a few of these doctors and they are all wonderful, educated people. They do not however, agree on how to do things and that is why it is so important to remember that here as well. I have met many people that cannot sauna and feel absolutely horrible when they do and for me it was magical. Then, I have met folks that swear by allergy shots and as recently posted here, some feel that the shots made them feel worse. It is SO important to keep an open mind and remember that we are all so individual that we are just not going to be able to ask a few questions and get all the answers. It takes years of work and dedication. I read all the posts, books, articles, etc that I can get my hands on and then come to my own conclusions about what works for me, and only me. > > I have great respect for all the doctors and specialest that or trying to help us, even if I get pretty agervated with some of them sometimes. this is a multisymptom/multiorgan disease, to get help from regular doctors, you would have to go to maybe 20 different doctors to have each part of this addressed and they would have to communicate, and thats not going to happen. > like Dr. Thrasher stated, the genetics just means you are more > seceptable. no one is immune to toxins, theres several other bodily functions that come into play and just how badly contaminated and whats in the environment of that WDB all plays a roll. the younger and older can be more seceptable, people with pre-exsisting illnesses can be more seceptable. > I think Shoemaker has done a great job in proveing and documenting the chronic inflammatory responce syndrome, > CIRS-WDB , sometimes it takes along time to prove what happens to us from this illness when there are other factors involved against us. > so you have to prove things by seeing many patients,running the same tests and documenting that and than writeing a report with the documentation that prove beyond doubt that this is caused by exposure to WDB. > thats a lot of work but he did it. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2010 Report Share Posted August 21, 2010 I understand, I think he does still test for them, he also tests for lyme, other testing for inflammation, ect. but the continued use of the " dreaded " genes as a trem could be getting carried on by the people who read MW more than anything. > > I totally agree. Again, I have respect for anyone who has tackled this huge > issue, and I owe my life to folks like Dr. Shoemaker, Dr. Thrasher, Dr. Hope, > Dr. Kilburn, Dr. Rea--and others. They truly hold the torch and provide a > beacon of hope for what could be hopeless. It might just be my personality > type, that I don't typically like a " doomsday " approach to healing/genetics. > It's just like in my field of psychology. There are genetic predispositions to > certain mental health disorders, but environment, lifestyle, personality type, > and overall life management play a vital role in the eventual outcome. So many > other issues play into whether one lives with mental illness or not, certainly > having a genetic predisposition doesn't predict anything with certainly.  I > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2010 Report Share Posted August 21, 2010 Oh.. Ok.. wow.. Ive read his protocol and it sounds brutal.. the 6 day a week 6 hour a day one. I do 45 in my wilson sauna every now and then. I have sweat pouring down n streams, so that not an issue, but I have to be careful of tachtycardia/POTs symptoms. Its doesnt get as hot as a FIR.. near fir has its own claims of superiority and I hve no clue which is " better " .. its the first sauna I was introduced to so went with it. I keep hearing good things about HH saunas.. afraid to get one and then have to leave it behind like this one. A bit of a ramble: My parents had severe water damage, worse than mine and a bothced remediation. They now have " rare " amounts of stachy in return duct and small amount in air sample. They have lung issues that are better but still bad.. told them furniture is probably got quite a bit of spores which might be " re infecting them but on a smaller level then before .. this is the hardest part of relocating.. coming to terms with the fact that we will never know how much stachy was lose (not to mention the AP) and now contaminatd their things are and they will be coming over and wanting us over. in this case, I am worried about cross contaimination. I am running shoemaker labs to see where I am .. should be able to handle smaller expososures betteer if markers are down and up as they are supposed to be. have a feeling VEGF is struggling for me. I have low MSH gene and low MSH 3 years ago when i was not having CFS symptoms. So not sure where I will fall in all of this.. or how safe our belongings will be if they are in and out. We are doing two ERMIs or their house.. one specifically of furniture, though i am not sure how accurate or helpful this will be. Robin > > I spent a whole year at Dr. Rea's clinic and did sauna in a Heavenly Heat infra-red sauna daily for one hour at 160*. I had to work up to that obviously as you need to start slow and acclimate your body to it. I am a great sweater as Dr. R put it which is why I had such success with detoxing that way. Not all patients sweat well and some do not at all,what he calls non-sweaters. You can read about detox benefits on their web site. www.heavenlyheatsaunas.com They are designed specifically for folks with MCS. > Quote Link to comment Share on other sites More sharing options...
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