|
Post by southerndrawl on Nov 27, 2005 2:20:58 GMT -5
i am so tired from reading, trying to tie all this together. ran across Severe Combinant Immunocompromise Disease. Typically fatal in children. It is ONE version of immune disorders. keep reading about lesions, asthma, etc in older children, and these occur in SCID. see snip below re: # of births who have X-SCID. NIH Genetic Modification Clinical Research Information System (GeMCRIS®). GeMCRIS is a comprehensive information resource and analytical tool for scientists, research participants, institutional oversight committees, sponsors, federal officials, and others with an interest in human gene transfer research. GeMCRIS allows users to access an array of information about human gene transfer trials registered with the NIH, including medical conditions under study, institutions where trials are being conducted, investigators carrying out these trials, gene products being used, route of gene product delivery, and summaries of study protocols. www.gemcris.od.nih.gov/and MOST INTERESTINGLY: Current Perspectives on Gene Transfer for X-SCID www.webconferences.com/nihoba/15_mar_2005.htmlAs an estimate of how common this disorder is, I can give you my personal lab's experience because I run a molecular diagnostic mutation detection lab for anyone who wants to enroll and sudden samples and, of course, this is your tax dollars at work, so we don't charge for the testing, but I'm sure I don't have every sample from every SCID patient sent to me. This is a typical year in which I received 34 samples and 19 had genetic defects in the X-linked gene. Which is about half or about what one would expect from published studies. If you look at the incidents just comparing this number to the number of beferghts in the U.S. which, is four million, then you would say that I diagnosed X-link SCID in one and 210,000 infants. If you accept that X-link SCID is half of all SCIDs, that means the incidents would be 1 in 100,000 if I were support all the X-SCIDs in the whole country, so I'm sure this is an underestimate. Certainly we also know SCID is diagnosed at autopsy and some infants who died of infections before the disease was considered and in 1997, NIH held a conference for SCID families in which they were brought to the NIH without having to pay and even so, it was noted that of the participants whose babies had been diagnosed with SCID, their median income was nearly twice the national average. This suggests to me that SCID is diagnosed much more readily in families with resources and, perhaps, missed in families without resources. As we talk about this disease X-linked SCID, should bear in mind the genetics illustrated in 24 Pedigree. Only males are affected with this condition because they have one X chromosome, and females who might be carriers are themselves unaffected. On the other hand, this is actually the most common presentation of SCID. These days, our family sizes are small in the U.S., and also, X-linked conditions have a high, spontaneous new mutation rate. This is a patient with SCID showing oral CANDIODISIS. genome.nhgri.nih.gov/scid/exon5.html www.webconferences.com/nihoba/334284.htmlstarting doing searches on SCID, HIV-1, CD4, and dioxin, and b. thuringiensis.
|
|
|
Post by london2146Guest on Nov 27, 2005 2:52:32 GMT -5
Keep going SD, you're on the right track, but I thought you didn't want to spoil it for Southcity. I would write you but I'm not at home so I cant get your email address, nor can I recieve PM's. You're on right track though.
|
|
|
Post by london2146Guest on Nov 27, 2005 2:57:15 GMT -5
They now have more chromosomes! The one they called number 5 is really the 12th chromosome.
|
|
|
Post by scared on Nov 27, 2005 8:38:15 GMT -5
Okay, now your really scaring us!!!
|
|
|
Post by skytroll on Nov 27, 2005 11:57:43 GMT -5
Don't let fear rule, scared. Once this hits big time, in news, then we have to be prepared to stick together, like south, london, fla gal, ladycop, and others who have an idea. Don't go away. Research too, and be brave, dear one.
Skytroll
|
|
|
Post by Ms. Kitty ( kraz as a kat) on Nov 27, 2005 14:13:10 GMT -5
get ready everyone, scared were all here!!!! we are all in this together!!!! United we stand!!!!! One group of suffers, under God, for good health and a cure for all!!!! GEESH I'M TIRED: LADYCOP10
|
|
|
Post by Ms. Kitty ( kraz as a kat) on Nov 27, 2005 14:16:25 GMT -5
get ready everyone, scared were all here!!!! we are all in this together!!!! United we stand!!!!! One group of sufferers, under God, for good health and a cure for all!!!! GEESH I'M TIRED: LADYCOP10
|
|
|
Post by TonyM on Nov 27, 2005 14:17:34 GMT -5
Ya know what, I wish SOmeone - Acheem - (LOL) would try and figure out a way to make a solution to spray on the body that isn't harmful in any way to make these things Very visible, so we can actually see em moving all over the place. Then we could go to a doctors' office, and then let them try to explain all these blue, or what ever color we might use, things crawling or jumping all over my body...just a thought - but man would they back away FAST I bet!!!
|
|
|
Post by bigmike on Nov 27, 2005 17:39:34 GMT -5
I don't have the equipment, but I thought that possibly one might be able to see these things move while just under the skin if one had a very sensitive infrared movie camera. I have seen equipment that can look through walls and see the figures of people on the other side, where essentially everything is at room temperature up to the temperature of the Human. Now one might have to have something sensitive to a fraction of a degree with a clear view to the skin.
Or, if the crawler was big enough, possibly it could be seen on a MRI (Magnetic Resonant Image). Some of us know that at some stage we felt something that large. Hard to capture the setup though as they move around, although there sometimes is a favored spot (I know some of you know what I mean).
I believe that the majority of the holes come from the inside, and of course they can appear just about anywhere. They seem to be boring the hole outward. Either to find a place to exist/grow or possibly to deposit the eggs or the next stage.
|
|
|
Post by drawl on Nov 27, 2005 20:27:20 GMT -5
just had a thought... i remember when i was reading about pseudomonas aeruginosa and Green Flourescent Protein, and how they use red grow lights to signal the flourescence. maybe reading about that would prove some type of way - and yes i too have thought about night vision goggles. i remember asking the question 'what do we look like from space?' is florida, texas and california glowing? WE ARE FREAKING GLOW WORMS PEOPLE. throw a party, invite your friends, and turn on the pet urine lamp. amaze your friends, INVITE A DOCTOR. then rinse and repeat.
london, as for spoiling anything for southcity, i never indicated anything like that. i really wish this would CHANGE IMMEDIATELY from the DAMN RACE that seems to be going on here. it just turns me off, and makes me not read what's posted.
i stated that IMO before an all out assault on the media, politicians, WORLD SUMMIT MEETING, GREENPEACE, CARTER CENTER, march on washington (the million glow worm march) that we need to KNOW for sure. and that means finding out what this is, then finding a way to test for it, so that there is unequivocal proof. i am merely doing nothing more than you have, reading, searching, thinking, posting. i am just less antagonistic than you are. period.
i have a small child, and have tried to get his father to UNDERSTAND multiple times. except, when someone asks you 'what were you diagnosed with, or tested positive for?" and you say, well, uh, nothing, but let me tell you a long story, you see it all started..... people tend to lose interest and you know the rest of the story. same thing happened with my sister. and i have 5 total people infected in my group. 2 are in denial. i hope they drown in their yeast infected beer which they continue to consume mass quantities of.
so far i have: a major scientist interested, a whistle blower who is reading our information, and the name of someone who supposedly knows how to test for this, and a biologist, and a doctor who has seen another patient just like me, but no definitive answers. we will see how 'reliable' any of this turns out to be. and it doesn't look like this is going to happen in the next 6 months either. meanwhile back at the ranch, i continue to seek answers. then, connections with the very wealthy of the world come into play, AND I WILL PLAY THAT CARD.
so, peeps, it's time to get out your deck of cards? stack your deck to the best of your ability, and position yourself for what is about to come. rest your minds, take care of your bodies.
southerndrawl
|
|
|
Post by london2146 on Nov 27, 2005 22:37:12 GMT -5
SD,
Hostility for what? A hostile approach to what? You had responded when I asked for others advice on whether I should post what I had found out...The disease...the name of worm, the disease/virus(es) used in creating, it even though Southcity was against it.
I thought he was holding back knowledge and if that were the case, it would mean only more troubling times ahead. I thought if he was not going to come clean or give a darn good reason why not , then I would publically post it. Southcity admitted he knew that I knew the answer.
Since this was said and you were one of the ones urging for the answer to not be posted, I found it odd that you were currently posting possible causes for this disease. That's the way I took this strand, was there another reason that I just can't see? Maybe so.
But hostility, antagonistic?. Sorry you perceive it that way. I really am. If I had a small child I'd be worried to death and if someone said they knew the answer I would say Yes, give it to me. One could merely ask through a private message /email. I know that's what I would do if I had a small child. And oh by the way SD, do you not think I care and try to keep up w/you and him? I even remember about two weeks ago when you posted about him wanting the stick-horse that was out in your car. You see, I care. OR do you choose to see "Hostility?"
The choice is yours to make. I know my answer.
London
|
|
|
Post by ebgbgms on Nov 28, 2005 0:50:26 GMT -5
SD, While I was pregnant they thought Charlie was suppose to be a trisomee (sp?) 18, or a fragile X baby. Is this in the same category u r referring to? I wonder if LD led them to get these test back saying this and then saying they were wrong. I didn't know I had LD then. What do u all think? It is almost midnight and my 6yr old can't sleep we both layed with him for over 3hr. He is crying saying how sorry he is that he is Up and Down and can't sleep. SD, I will pray for your son too.
|
|
|
Post by justice on Nov 28, 2005 2:57:33 GMT -5
I looked into b.thuringiensis. I found this website: www.ami.dk/research/btcenter/bt.htmlOddly enough, it is a Danish Research Center- anyone visited Crossinglines website yet? This bacterium is used as an insecticide. 'Each strain(of Bt) is capable of affecting only a specific group of insects' i.e. the simuliid black fly- vector for occhocerosis vulvulous (this is what parasite most fit my symptoms when first researching my condition. Not to mention approximately 6 mos. previous to my major skin flare part of this disease and noticable vision impairment, I had been in Huatulco and been bitten by some bug that left a trail of raised blisters down my leg that itched to high heaven. I have yet to identify the creature that makes that type of mark and due to varying body chemistry and reactions, perhaps I never will), mosquito larvae, and catepillars of Lepidoptera. I know most of us are now familiar with the Lepidoptera family. What does it all mean? I can't tie it all together. I just think its more than a coincidence that all of these items are found on one web page from a Danish Institute of Research. Will someone please tell us what it is they know? Unless you have some grand plan to drop the bomb of information that will simultaneously:1) alert the public at large without causing panic 2)locate and detain those responsible for its' existence and ongoing spread 3)publically humiliate all doctors who felt it was somehow humane to humiliate us- not necessary to revoke their medical license as it would become common knowledge under item#1 that the medical community at large (excepting all Doctors who have thus far remained true to their oath) would be exposed as the outrageously expensive drug pushers of the pharmaceutical companies assisted by the insurance companies that they are 4) assembling all capable minds to find a cure and make available at no cost to those requiring it 5) ensure that #1 and #2 are achieved thereby protecting us as a group to not be singled out, rounded up, and detained in Morgellons' Camps- this last one really scares me. I know all of our rights as citizens of this country were taken away by the patriot act. I guess we can still go through the 'act of voting', but the time when our cast vote was actually counted is obviously gone. I can see this administration using our illness as one hell of a scare tactic that would necessitate a Police State to "protect' the population- mandatory innoculations of what exactly I don't care to imagine. All of this pomp and circus pants when they've been lying to us all along. O.K. Perhaps I've answered my own question here. If you're trying to avoid the scenario I just described, please don't tell me, not yet.
|
|
|
Post by drawl on Nov 28, 2005 10:13:41 GMT -5
thank you for the post re BT. funny that comes together that way. was reading a little about cutaneous anthrax. look it up. it's in the same family bacillus. lesions. www.drgreene.com/21_853.htmlBacillus anthracis becoming an ex-pat sounds good at this point. soon. as for my son, i can't get a dr. to diagnose anything. and the more i push, the closer i get to DOP, which doesnt serve him in any way. yes i am damned mad, and scared, and sick, but 'being still' and trying to live life, learn, research, until i really Know. oh, and the infectious disease, lyme literate dr. wants $2500 just to walk through the door for initial visit and all the tests for that. otherwise i sit testing repeatedly positive with a repetitive band 41 , all other clinical signs are there. hey, i was born with a congenital heart defect, pneumonia, etc., and lived in an incubator for the first months of my life. sounds like they had me from the get-go. mother diagnosed with 'lupus' symptoms, degenerative muscle disease, degenerative bone disease, spinal column sheath malformation, poor vision, lost all teeth, peripheral neuropathy, dibilitating arthritis, oh and the list goes on. i myself am having major kidney problems, infections, stones that never pass, liver problems, spots on skin. chronic ulcers. have: TMJ, diminished vision/glaucoma, hearing loss both ears, cystic acne, kidney stones, distended gall bladder, liver spots, ezcema, periodontal disease, peripheral neuropathy, bi-polar disorder, have had pelvic inflammatory disease, degenerative arthritis, recurring ear infections, recurring pneumonia, recurring strep, thrush, yeast infections. 3 'slipped' discs in last 3 years. migraines. oh, and mild obsessive-compulsive disorder. ear ringing, floaters, have had aural hallucinations. as for fragile-x chromosome, my son is missing the tear ducts below his eyes, tears running down his face all the time, diminished speech ability, processing defect, congenital stomach defects, failure to thrive, hearing problems, digestive problems, congenital ptosis. obsessive-compulsive. we are both very fair with lots of white downy hair all over both of us. he has had occupational, speech, and texture therapy. i continue to work with him about over-stimulation, he shuts down when things are loud. he clutches things like a paper clip and will hold on to it for 3 days, his fingers cramp and hurt because he wont let go. he now has 'imaginary' friends that he talks back and forth with, and he warns them of 'getting into those ants' or 'be careful of the spiders'. and BTW he was talking as a baby, then he got the varicella shot, and stopped completely for 2 years. I READ JUST TWO DAYS AGO THAT immunocompromised children should not get that shot. he will probably have problems with shingles or worse as he gets older. no one has diagnosed him OR me with SHINOLA. and i'm over-reacting, right? so, yes, GETTING A DIAGNOSIS for an IMMUNE DISORDER is next. my family history puts us right in the middle of cotton country mississippi, and a few 'landmark' events that my mother has documented since around 1960. you know, if it hadn't been for the 'scabies' diagnosis i would have never put this all together (except for my son's problems) hmmm. yes, i am mad. but i need to be smart and understand how to prove this WITHOUT A SHADOW OF A DOUBT is all related, and where the best place to be in this world is when this is done. so, instead of spending stupid money on for meaningless presents, give yourself a savings account this year. mail a card to your friends. buy only what you need for your health, and splurge a 'little' every now and then for fun things. you're going to need every dime you have. drawl do others here have medical history like this?
|
|
|
Post by Slick on Nov 28, 2005 11:58:38 GMT -5
Has anyone contacted a lawyer yet about a class action lawsuit? It seems to me that this is where we are heading. Like I've said, I'm usually a lurker and check the board out at my local library. I spray the area off with my enzyme spray so I hopefully don't transfer this to anyone else. But I think with everything I've read, there seems to be a HUGE transgression or a huge amount of negligience going on here. In fact, every time I read this board, I come away angrier than when I started reading. That's no reflection on this board, but on the society in which we live. I want to sue someone for this. I have lost my job and can't seem to get another one. I sort of makes it tough to live. I'm not claiming to be a "victim," that's not my mentality, but someone messed me up and I want them to pay for my medical bilss which have mounted up into the $10,000s.
|
|
|
Post by skytroll on Nov 28, 2005 12:21:27 GMT -5
Oh, I do think this is in South's plan.
skytroll
|
|
|
Post by justice on Nov 28, 2005 13:20:54 GMT -5
drawl- I am sick with a combination of sorrow for you and your families health conditions and an anger that fills this shell I reside in. I have never in my life been a person who advocated violence. Never believed in an eye for an eye. As I sit before my computor seething with hatred for those responsible, it is time for action. I'm not talking senseless carnage here. It is time for an organized, legal confrontation that would bring them down to financial ruin, because that would injure them far worse than the loss of an eye- they'd just purchase a new one. I'm going to seriously start looking for a lawyer or group of lawyers. My problem is that I need to know exactly whats up. If you would care to email me personally to discuss this further I would really appreciate it. If your life doesn't allow for the time right now, that is completely understandable. God grant you improving health and the strength to continue. Your ongoing struggle with this nightmare and the others who face it make me marvel at your strength, determination, compassion, and intelligence. You are a brave soul. You make a formidable opponent. I am overjoyed to have you on 'our' side.
|
|
|
Post by justice on Nov 28, 2005 13:27:16 GMT -5
Down from my soap box, I remember now what I wanted to share with you about the cutaneous anthrax. I have a friend who 3 years ago was diagnosed with this and given antibiotics with full recovery. She is a gardener but she also works at the goodwill drop off centers. Since contracting that, she is an avid glove wearing employee. Possibilities for contracting our scary stuff, don't even allow myself to venture in that direction.
|
|
|
Post by skytroll on Nov 29, 2005 12:47:22 GMT -5
Big Mike,
You know they do MRI's for Alzheimers and if they can see the tanglements in the brain from that, then we know darn well they can see this stuff.
A plain old MRI could tell us, but, something is holding the medical community back from investigating this. I saw my mothers MRI and I saw some very strange things, and SueL saw things in her son's MRI, of which the doctor denied.
So this machine could reveal the answers. You say there are MRI type cameras?
I want one.
Skytroll
|
|
|
Post by drawl on Nov 29, 2005 13:15:26 GMT -5
skytroll and mike,
i have had 4 MRI's in the last 5 years. these are the records i am trying to get
my mother just had one within last month, will get hers too.
drawl
|
|