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Post by bugsy on Jun 24, 2007 16:47:31 GMT -5
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Post by hannah on Jun 24, 2007 19:48:21 GMT -5
I'm in Scotland, as I keep saying, but I will be taking the print out of the page on Morgellons on the CDC site to my doctor tomorrow. The initial response by one ill informed and close minded GP has influenced most of the other doctors then consulted with. This has delayed any proper investigation or treatment because ranks, for the main part, are closed. Thankfully, we have a Homeopathic Hospital and Mary L. put me in touch with a sympathetic and smart doctor or I don't know where I would be today. Also nowhere without the support and knowledge of people on this website. Please God changes will come about before too long. We have hope now.
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Post by Sidney on Jun 24, 2007 22:41:20 GMT -5
Thanks, Liz. I recommend no advance notice of your intent to collect copies of your medical records. I've heard of too many instances of medical records "lost." Ha ha. Lost my foot!
"Lost, stolen, strayed, altered, new office employees must have misplaced them, stored (somewhere) and not enough "manpower" to send a runner to find them.
Just stroll in, smile sweetly, ask for them, and never take "no" for an answer.
They'll make excuses, alter records, cover for one another and outright lie. Have seen it happen, thankfully not to me, but it does happen, as sickening as it is.
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Post by liz on Jun 25, 2007 2:59:40 GMT -5
funny thing as I called one of these guys (the ones that say they lost my records) he didn't have the guts to call me back but had a colliege call me back! they seemed to remember me although it was over three years ago...told him I want my records corrected...told me I would have to go through patient affairs to request that....they also said not to bother this doc again as he offered me a solution and I refused treatment (zyprexa) this is the same guy who said he was just transfered from the american institude of health or something like that in WASHINGTON DC...then I found out he also works at the va hospital ...they said I was lucky to get to see him! How would they remember I refused treatment if they lost my records over 3 years ago! at OSHU you have to be pre-screened though derm before you can make an infectious disease appt which was reccomended to me by three docs in their ER...he blocked me from ever getting there....said I had to then go through phych....I couldn't believe this was happening to me...Tom was with me...as a witness they would not let back me up! This is before I got on line and found you guys...later that same summer TOM FELL ILL AS WELL! AND BOY DO I HAVE SOME KAISER STORIES...
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Post by liz on Jun 25, 2007 3:01:55 GMT -5
BUgsy thanks for that!
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Post by Carrie♥ on Jun 25, 2007 8:01:23 GMT -5
Oh so this is what you were talkin' about Microdot. I have little faith, their ignorace...they have so much to loose for the souce of our disease to spring forth. I don't think conspiracy but they are really just a reporting agency aren't they guys? Are they really going to do something for us? I don't dig them much.
"dermopathy" /der·mop·a·thy/ (der-mop´ah-the) any skin disorder.
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Post by belikewater on Jun 25, 2007 19:53:01 GMT -5
They have to know this is related to Lyme disease. Is it a manifestation of Lyme contracted from the milk supply? I ain't holdin' my breath, but if they dump the DOP krap that will be a start.
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Post by godog on Jun 26, 2007 7:41:58 GMT -5
I was never diagnosed dop, but I did want all my records and so I had a nurse prac. friend of mine request them, I filled out a request form for all of them, each doctor and office. And I got mine no problem. So, try that route. Through a doc-friend or sympathyzer. Plus, they usually don't charge another doc, professional courtesy.
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Post by Niels on Jun 30, 2007 15:57:55 GMT -5
They have to know this is related to Lyme disease. Is it a manifestation of Lyme contracted from the milk supply? I ain't holdin' my breath, but if they dump the DOP krap that will be a start. The CDC is doing it's damndest to have it's head in the sand on lyme disease.They're obfuscating and confusing people with a very strict definition of Lyme that ends up missing the majority of Lyme infections from Borrelia Burgorferi, and completely fence-out a wide variety of lyme-like infections that are appearing worldwide, not testing as borrelia burgdorferi, but showing existence of other species of borrelia bacteria, and resulting in lyme-like symtoms, with variance as to how much "brain" and "skin" involvement the different infections cause. Meanwhile they're saluting the IDSA guidelines on Lyme, treating STARI as a completely different disease, treating other lyme varants as yet another disease, and treating morgellons (which might just be an oddball variant on STARI) as yet another completely distinct disease. The effect they have is "divide and conquer" -- what they fear is that all the morgellons patients will find they have chronic lyme, request treatment for chronic lyme and therefore increase the awareness and demand for chronic lyme as a disease. Instead the latest IDSA guidelines (which the CDC glommed onto as quick as it could) basically trreat all chronic lyme as "all in the head"... just like they've tried for morgellons. In fact, my felling is that morgellons is exactly what the lyme denialists fear. Because a chronic lyme patient might well have no physical signs of anything wrong -- just fatigue, pain, confusion, memory issues, all of which can be claimed as "depression" and not disease. But a chronic lyme patient with non-healing lesions is a whole different ball of wax. If the patient can manage to convince the doctors that the skin lesions arent' "self mutilation" then suddenly you've got lyme disease with a directly visible physical symptom that would force doctors to treat you and not ignore your complaints as psychiatric. So that explains both the tendency to give a DOP diagnosis to morgellons patient (to prevent them from being able to get a lyme diagnosis). if that fails and they do get a lyme diagnosis, then they only get one month of antibiotics and any issues after that are "all in the head". So their worst nightmare is morgellons being conclusively shown not to be DOP... becauee then it'll show how much of a lie "one month of antibiotics cures lyme"... as there'll be Morgellons/Lyme patients still producnig lesions after all the experts say the infection should be gone. Do you see how they've got us "boxed in"?? And do you have any idea of the uphill battle we face, given that Morgellons might well be the medical "canary in the coalmine" for Lyme disease?
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Post by liatris on Jun 30, 2007 23:51:09 GMT -5
They like to claim that a person not cured on a suboptimal regimine of antibiotics for Lyme has got an All-In-The-Head case because they are lazy and don't want to figure out what treatment approach would actually work well for everyone. LAZY+IMMORAL = lets'call it all in their head - maybe we can get away with doing nothing that way. Same with Morgellons and/or any type of skin parasite infection. Too much work to figure it all out (LAZY) so why bother - let's just call it DOP (IMMORAL). All the powers (hah!) that be are happy then. The insurance companies will not have to pay for anything, disability won't have to pay out to those who are sick - that way the government can spend more money keeping our troops in Iraq so that Dick Cheney and Condoleezza Rice can continue to make big bucks on Halliburton. So, you see, it all works out for us (I mean them) in the end ! Hmmm..... boggles my mind that more people don't see the horrid conflict of interest in the big players in our government having a personal financial interest in keeping our troops there and spending tons of our hard-earned money on that instead of dealing with serious illnesses - not to mention, creating new ones in our troops who come home and then get ignored.
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Post by liatris on Jul 1, 2007 10:54:18 GMT -5
This is too wierd - would anyone venture to guess why I put the word "instrument" in front of "Cheney" ? I posted that several housrs ago and really do not recall putting that word there and never thought of him as a "instrument". I guess I shouldn't post when I am tired !
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Post by Sidney on Jul 1, 2007 11:14:27 GMT -5
Tee Hee, Liatris. I wondered about "instrument" in front of Cheney's name, but my guess is you used another word, one not allowed, and the word you used was replaced by instrument. Brings to mind all sorts of possibilities, but I'll refrain from going there. Think about it.
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Post by bugsy on Jul 1, 2007 12:50:21 GMT -5
They should replace instrument with "tool" in this particular case. ~Bugsy
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Post by godog on Jul 1, 2007 17:20:05 GMT -5
Instrument of Evil is probably what you were thinking.
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Post by belikewater on Jul 1, 2007 20:26:52 GMT -5
niels, thanks for your rant, I'm with you. One solution is to hug all the doctors and politicians you can, shake hands. Everyone I've spoken with about this says they've been told they are not contagious.
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Post by Patti on Jul 2, 2007 13:27:06 GMT -5
Liatrus, you're not losing it lol....that's the default censor part of the forum and I believe that's their word for d i c k. I'll try to change that to something else.
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Post by See Jane Crawl on Jul 2, 2007 19:23:32 GMT -5
Patti,
You could use "Richard Cranium" without being too offensive & still getting the point across! ;D
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Post by Patti on Jul 2, 2007 19:34:05 GMT -5
For sure.....funny stuff there, Jane! I've always wondered what would happen if someone named Dick actually registered.....would his name always show up as "instrument" instead? It's so common a name that I'm surprised it hasn't happened already.
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Post by liatris on Jul 3, 2007 4:30:28 GMT -5
Instrument of Evil is probably what you were thinking. Yeah, Godog - that is what I was thinking - like he is an instrument of the devil - heh - not actually to the point - I really think he may be the devil, himself - Conan O-Brian (late night talk show host) has a little old film clip of a man in a red outfit swooping out with his cape held in one hand sort of prancing about demonically with mist misting around and Conan remarks that that is Cheney - it is really quite funny cuz it is definitely an old film clip and it COULD be Cheney. But Patti cleared up the mystery for us.
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Post by liatris on Jul 3, 2007 4:36:24 GMT -5
Liatrus, you're not losing it lol....that's the default censor part of the forum and I believe that's their word for d i c k. I'll try to change that to something else. Patti - Thanks so much for clearing that up - funny thing is that just ten minutes before that I noticed that I did actually put a really weird, irrelevant word in an old email - I sent quite awhile ago. Hey, maybe you can tell me why I put the two words "cow trap" in an email totally out of context ?? I didn't even know that there was such a thing as a cow trap - I had to call someone in Texas who informed me that it is a bit of bars or something that is meant to trap cows so they can give them injections and such ! Imagine reading an email and seeing that in what you have written ! Oh well, I feel better that I have only done it once ;D ! Thanks again. heh, heh ... "instrument" instead of "Dick" - who makes these decisions ?
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