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Post by junebook on Jun 21, 2007 22:59:56 GMT -5
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Post by junebook on Jun 21, 2007 23:04:09 GMT -5
I'm beyond thrilled and ecstatic. Our toe's actually in the door. Next? The whole foot.
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Post by dc10801 on Jun 21, 2007 23:31:24 GMT -5
I'm gonna print off that page and have it tattoo'd on my back!
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Post by Roberta Louise on Jun 22, 2007 0:25:16 GMT -5
To Laylo if you ever feel that way again please email me robertalouise@xtra.co.nz I know exactly how you feel!!!!! <aybe a chat would pick you up. Hang in there!!!! Very best wishes. Roberta.
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Post by justhanginin on Jun 22, 2007 9:34:44 GMT -5
Finally! Thank you to all the persistent people who kept at the folks at CDC. I only made one call to them (didn't want to appear deranged) but for everyone who did this and more thank you again. Maybe now they will get off their tails and actually do something!
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Post by beckybailey on Jun 22, 2007 15:33:38 GMT -5
;D WOW ;D
I think I'm speechless for once...
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Post by liz on Jun 22, 2007 16:10:34 GMT -5
just when i was at my lowest..i am very happy too except one thing...i wish they wouldn't just refer to it as a skin disorder as i am preetty sure it messes up the whole body inside and out...but i am happy with the progress...good luck to all my friends out there...hope your having a good day!
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Post by zabrubon on Jun 22, 2007 19:13:09 GMT -5
happy tears
thank you to all the people who did the leg work to make this day possible
the squeaky wheel got the grease
yessssssss happy tears
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Post by janedough on Jun 22, 2007 23:13:01 GMT -5
I agree Liz, but at least it is out there for doctors and people who are just coming down with symptoms. It took me months to find anyone who experienced any of the symptoms I was dealing with. I am hesitant in my faith in the CDC, yet grateful that they finally addressed the symptoms that God only knows how many people suffer from. Hopefully, we will now see people who have been thinking themselves crazy and the doctors telling them that they are getting the information.
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Post by liz on Jun 23, 2007 9:41:49 GMT -5
i wonder if this diseases works from the inside out......the fibers, parasites, lesions have come last for me..last three years....a lot of other systemic things started going wrong way before that...it seems Tom is now going through the internal symptoms...he does have scalp lesions and some fibers but nothing like miine!!!!
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Post by godog on Jun 23, 2007 15:20:30 GMT -5
So, for the people who have this disease and have been diagnosed DOP, can they now sue their doctors? Or the CDC themselves?
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Post by prevenge on Jun 23, 2007 22:02:20 GMT -5
hopefully it will come to that.
-M
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Post by Sidney on Jun 23, 2007 22:59:05 GMT -5
Time to remind people again do not hesitate. Pick up your medical records and all your lab records and don't give them any advance warning.
Recognizing that may not work for everyone, but I've found it best to simply appear and ask for copies of all records and then if necessary I go to the lab and pick up copies there. Some places charge a small fee, others do not.
Get a three hole binder, a package of those clear plastic protective things you can slip your records into, and file them chronologically.
Forewarned is forearmed.
I want the heads of only the idiots who committed the Cardinal Sin....Delusions of Parasitosis.
Off with their heads.
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Post by prevenge on Jun 23, 2007 23:22:00 GMT -5
well we should really begin to start the formation of an articulate communication of our own that exacts this message.
that we've indeed been... tortured... and that our physicians have been complicit in the torture.
simples as that.
we need lawyers.
-M
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Post by dc10801 on Jun 24, 2007 0:00:30 GMT -5
Seriously, you guys need to stop with the talk of lawsuits. The only thing you can accomplish with that is to scare off anybody willing to help...Say the "L" word and doctors run for the hill. I truely sympothize with the amount of frustrations, I've had this crap since at least 2000, but I'd rather concentrate on those willing to help me now than the idiots who left me to rot over the years. Hopefully their day will come, but if it doesn't I just want to get better. The best revenge is living well.
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Post by bugsy on Jun 24, 2007 7:56:54 GMT -5
Ya know what? I think this is a wonderful start and I emphasize the word START. I agree with what microdot and pez have been saying on other threads. The time to act is NOW. The babys head is crowning NOW is the time to push!!! I fully intend to put the pressure on my senator's legislative aide this week. You see NOW I have much more credibility due to the fact that the CDC DID post this. It lends to the fact that it is an eminent threat. Not only that but this upcoming election will work to our benefit if we put the right word in the right ear. They need US. They need our support OUR votes. Someone heard this!!! Someone listened!!!! Just takes the right one.....Could be YOU...Could be Mary L. with all of her children. Whoever Mary L. is I thank her and fully understand her plight. Thank you Mary. If I could I would kiss you and send you a basket of fruit. And I certainly would love to know which civil servant was responsible for this wonderful start in the right direction......would get a fruit basket as well. Maybe someone at the CDC. Never know.
~Bugsy
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Post by godog on Jun 24, 2007 9:06:44 GMT -5
Well, everyone needs copies of their medical records. I have all mine that I could possibly get. Mri and colonoscopy too. And doctors who have improperly diagnosed someone with a mental illness needs to be addressed. Pesonally, I have not been actually diagnosed with dop. The only doctor I ever said the word morgellons to, one time, he said this is going to make you mad and then suggested it and that P medicine. Can't think of the name. Never can. Anyway, I said no way and told him "yeah, and have every doc that looks at my files think I'm crazy?!!" I will enjoy going back to him and tell him of CDC's new opinion of morgellons. But for the people who have actually been diagnosed and suffered because of some doctor too lazy to do his job right, their doctors need to suffer the consequences. Their mistakes kill people.
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Post by microdot on Jun 24, 2007 13:05:04 GMT -5
I thought everyone should see this. "Another Step in the Right Direction. The CDC has now inserted a page on Morgellons disease on their website. This has led to many sufferers expressing joy, but I wonder if this baby step could be transformed into a giant leap, so as to free the unjustly suffering from the bondage of decay, and thus bring them into the wonderful light of recognition, diagnosis, treatment and restoration to as full a healthy state as possible? I do not describe the CDC's action as a 'baby step' to discourage anyone. In many respects this is an important sea change, as was the recent removal of the reference to delusional parasitosis from the infectious disease section. What I do not think you should tolerate for a nanosecond is the invitation to submit electronic communications that will not necessarily receive individual answers, but which may be dealt with under their 'frequently answered questions' section at some point. If you really do believe that you are genuinely suffering from this horrible condition, you should assert your right to receive swift pcr screening for the agrobacterium infection that may be in your lesions, basing your claim on the findings of Professor Citovsky. You have a right to request this, and to receive a personal reply, because Professor Citovsky has stated that treatment is required in positive cases. I would say that this is a fortiori the case if you have any related problems of an ocular nature, as your eyesight is far too precious for you to tolerate anything in the nature of a frivolous or vexatious delay. This is not a trivial problem, so I do not see why you should have to tolerate others setting the timescale towards full assessment, diagnosis and treatment.I am not giving individual legal advice, but you could certainly consider going to see your private attorney about any unconscionable delays in receiving appropriate screening and treatment" scienceblogs.com/aetiology/2006/07/new_story_on_morgellons_diseas.phpWe do not have to tolerate it. Do we want a baby step or a giant leap? Keep pushing!!! microdot
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Post by liz on Jun 24, 2007 14:31:40 GMT -5
Sid is right! I told you guys in a earlierr post some of my dop doc pushing records have now been reported as lost or stolen...i need to find the letter they wrote me saying to check my credit report and it was thier obligation to advice me! funny how they said many others peoples records from the same dop pusher at OREGON STATE UNIVERSITY HAVE VANISHED! Kaiser has stalled for every giving me my records! I am gonna get tough and make them cough up everything! i did save the zyprexa scrip for eveidance he told me all my little freinds would go away or atleast not bother me if i took those pills....how humiliating !even gave the sample to take right then..which i did as i was so upset! put me in a coma for two days...couldnt have felt a python crawling on me! do derm docs have the right to push these phych drugs and make these 10 minute 1 time visit diagnosis...I think not! geez, people have lost their kids and commited suicide over these idiots...I too want to get better but I also want JUSTICE!!!
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Post by lydski on Jun 24, 2007 16:11:48 GMT -5
Liz- I agree.....I got the 10 minute diagnosis three years ago and my life hasn't been the same since! Yes, I think we are all do deserve some justice.
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