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Post by binarky on Aug 8, 2005 17:38:07 GMT -5
I went to the Dermatology doc today. He told me he didn't believe anything about MORGELLONS, BUT WAS WILLING TO SEND ME TO ANOTHER DOC. I ask him to "PLEASE NOT SEND ME TO A PSYCHIATRIST"!hehe He sort of grinned and said no, he was sending me to UAMS to a doc. I called to make an appointment the other day on my own and they said it would be the end of Dec. or maybe Jan. Well, he got me in on Sept. 15. The doc he is sending me to is a Derm-path doc. He is the chairman and professor of this clinic. If I called myself I would only get to see a intern/resident doc. So the reason for all of this is I have a little over a month to get as much info ready for this CHAIRMAN!!!! Any good advice on how to approach all of this would be GREAT! I don't want to screw this up!
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greg
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Post by greg on Aug 8, 2005 17:50:28 GMT -5
Where are you from? Where is this Doc located?
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Post by binarky on Aug 8, 2005 18:09:31 GMT -5
Greg, I live in Little Rock, AR.
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Post by bb on Aug 8, 2005 18:41:23 GMT -5
Ask him to watch even one of the many news stories on Morgellons. www.geocities.com/brain_fog/usp_media.htmlAsk him to check out morgellons.org, and contact the founder, Mary Leito. Ask him to contact any of the medical professionals listed at the site, they are all baffled too, but trying to save our lives. I'M SO HAPPY FOR YOU! GOD BE WITH YOU!
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greg
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Post by greg on Aug 8, 2005 18:48:14 GMT -5
I went to a Dermatologist who refused to take samples, nor send any to CDC. even though I had a letter of request from the CDC for Derms to do this very thing. Then I was referred to Disease Specialists (3 of them) who when they found out I was also a Lyme Disease patient, refused to see me. Then I saw one Disease Specialist at UCSD medical center, who was a complete waste of time. Finally I called Dr. Schwartz, who said that I needed to be treated immediately, and for a fee he would contact my Disease Specialist. And so he left a message for them to call him. Then I called them. They called me back, and here it goes. I said Schwartz says he cultured the Bacteria that causes our illness, and he would to inform you of what it is, and consult with the treatment as well.
She stated that we do not want anyone calling us and telling us what to do. I said, you don't know what to do, for all you could care I could have died since you saw me last 2 months ago, and you have not treated me. She insisted they don't want to be called, and I said "You people sound like a bunch of idiots, and I don't know why my insurance is paying you anything." I never went back! I had Dr. Schwartz call my Primary Dr. (who listened to him) and then my Primary called me congrulatiing me for my Diligence, in that we finally know what is going on. I am entering my 4'th month of treatment, the best thing that has happened to me in 15 years.
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Post by binarky on Aug 8, 2005 22:31:17 GMT -5
Greg, So do you think I would be better off buying a Schwartz book? How did you get in contact with him? I just want some relief from this...whatever! I have two small children that have upper respiratory problems,rashes, stinging, etc. and EVERYONE believes I am imagining these things. I don't know which way to turn anymore. I have tried to keep a positive attitude these last few days. It helps. But I am also a hair stylist and am horrified of giving this to a client. What gives! I appreciate any help I can get to get thru this. I have been going thru this for some 7 months now. I can not imagine 15 YEARS!!!!! I am so glad to hear you are getting relief from this nightmare thou. All the docs I have seen have told me the it was STRESS, DELUSIONAL, BEING TOO HARD ON MY SKIN,OR I WAS PICKING AT MY SORES TO MAKE THEM WORSE. I started feeling like I was crazy for quite a while. Nothing has let me totally believe that, so thats when I started searching under SCABIES symptoms and found out about MORGELLONS. If I could get these "critters" out of my hair I would feel soooooooo much better. I can not ignore that they are there when I feel them all the time. I don't understand. I am excited about the doc visit in Sept. but I also know not to get my hopes up. I will definitely be doing a lot of praying. God can open doors when NO ONE ELSE CAN!!!!
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Post by Orion*** on Aug 8, 2005 22:55:53 GMT -5
Hair stylest? Could it be how you contracted the disease to begin with? Every time I have my hair cut I could be infecting hundreds of people--but all of this could be dilusional pop pop===and if morgellons does not exist then we don't have a poblem with the community, Right? This whole affair is so damn irrational and the rediculess way the MLM is handleing it is unbelievable. I wonder how long until it hits them and they have to acknoledge it. Kind of like Big Foot and ET's Will we one day have our way?
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Post by TonyM on Aug 9, 2005 11:09:19 GMT -5
I noticed that Clear Channel is the one who owns Fox News Networks, I am not far from them. Hummmmm. Calling all News Stations, Oprah, Dr. Phil even? The public needs to know, and the Government can't stop Everone from "telling". Flyers dropped from planes? Posts in the Local Newspaper??? Any Ideas of what Could result from that kind of exposure would be appreciated.
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Post by TonyM on Aug 9, 2005 11:13:28 GMT -5
ALSO - Am I the only one that maybe thinks the Government might just be trying to keep from having mass hysteria among "The People". Like trying to prevent a public mass-panic? What's that called again, I can't recall....lol...ohh well, ya get what I mean, right??
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Post by binarky on Aug 9, 2005 13:08:31 GMT -5
I have wondered if I got this from a client. I still have not worked in the past few months. If I could get this off of my scalp and skin I would be working. That is not an excuse,its the truth! I have tried vinegar, salt, epsom salt, lice treatment, scabies treatments. NOTHING HAS WORKED! Now my delusional husband wants me to keep my appointment he made me for having such a mental problem. We have been separated for a couple of months (on and off). Before this happened to me we were like the IDEA COUPLE! We will be married 11 years the 27th of this month. He was my best friend and he has told me he doesn't even believe most of the things I say are happening to me. I will overcome this! Positive attitude,right?!!!!
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Post by bb on Aug 9, 2005 15:56:55 GMT -5
binarky, my husband didn't believe me either, until he was diagnosed with lyme. Now he is convinced.
I wish everyone would place ads in newspapers. I found five people with one ad.
But my next ad will read:
"American doctors are ignoring a new disease called Morgellons. Check it out at morgellon.com"
This will EMBARRASS THE DOCTORS and will get people to see the website.
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Post by TonyM on Aug 9, 2005 19:06:44 GMT -5
BB, I am sending a letter to Dr. Phil RighT NoW(Email on his site)!!! www.drphil.com Who knows, maybe it'll trigger something good, and maybe we all can get the help we need. As for Newspapers, I think I will follow you on that one, thios will only work in numbers of us doing the same. Maybe even get flyers and post em in legal spots where there won't be repercussions.
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Post by TonyM on Aug 9, 2005 19:26:37 GMT -5
This is the Dr. Phil Letter: Dear Dr. Phil, I am a 32 y.o. man with Morgellon's Disease. I wanted to know if you could find a way for me to get a skin scraping, since any Doctors I have seen refuse to take one. I have called many places, and without money, contacts, and the means basically, I cannot, much less does anyone seem to want to listen or even take me seriously. Morgellon's Disease is caused by Springtales literally taking over the body. Most people with this disease report disturbing crawling, stinging, and biting sensations, as well as non-healing skin lesions, which are associated with highly unusual structures. These structures can be described as fiber-like or filamentous, and are the most striking feature of this disease. In addition, patients report the presence of seed-like granules and black speck-like material associated with their skin. Many doctors diagnose people reporting these symptoms are just disregarded as a condition as DOP (Delusions of Parasites). Please see wwww.morgellons.com and lymebusters.proboards39.com/index.cgi?board=rashto see the Many people trying like hell to get aid from the CDC and the government. There are nights that I can't get to sleep until 3-4am, just because they are SO relentless, it is not even funny. I need help, and so do all the others' all accross the US and 15 countries outside the USA. Thankyou for taking time to read this, and I wish you and your family the best in life. Tony p.s. - Fox News has even done stories on this, as majority of people get lesions on their bodies, as I have had to deal with 2 in the past 4 years of having this disease. I have written the CA senators, and the 40th District Representative about this as well, but no response as of yet. I have contacted the NPA as well, and have spoken to Debra Alchuler there too, and her organization has named the same disease as Collembola. You can contact her at 781-449-6487 to verify I am a new registered carrier as well as the Morgellons web site. There's a woman that started this site because I believe she has this disease as well.
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Post by wolfe1 on Aug 9, 2005 20:20:43 GMT -5
binarky, i am also from little rock and I have been to 4 specialsts ( last diagnosis was delusional peri) Asked me to see a good psychiatrist. I believe it was kthv with the article on the women in little rock with the misterious disease. I have just recently found this web site and I am amazed at the similarity in almost every account of the pain , confusion, and hopelessness in this morgellons nightmare. Please report if you get a doctor who will listen to you at UAMS. I am tired of covering the leisons ,explaining away the sweats and mistrusting doctors.
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Post by wolfe1 on Aug 9, 2005 20:30:27 GMT -5
I forgot to tell you that I also was so desperate that I went to a my trusted veterinarian and had him look at some of the critters I had collected under his scope and he stated that he felt it all related to the dreaded springtails you mentioned in your dr.phil letter.. But no doctor that I have been to will verify and I'm sick of them eluding to delusional factors and the head dr I should see.
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Post by TonyM on Aug 10, 2005 14:24:42 GMT -5
Yeah, the letters need to start POURING in to the people that can/might be able to either help us, or shed light on why the Government is being so tight-lipped about this disease. I have to go run some errands today. Gonna print out like 20 or so flyers to post all over Saying: Hello, are you dealing with parasites, or what you think might be Morgellons Disease???!!! You might be if your experiencing symptoms like the following: Itching Feeling of Biting - Being Bitten Stinging Sensations Crawling Black specs on skin / around house Fibers coming out of skin/on skin-head and excess dust/fibers around home Sand-like granules coming from skin Hair loss as a result Being told by a Doctor or Physician to see Psychiatrist Being diagnosed with DOP (Delusions of Parasites) Foggy-brain, Hard time Concentrating/Thinking If you think you have any of these symptoms, goto www.morgellons.com and lymebusters.proboards39.com/index.cgi to register to become part of a support group for Southern California (Anaheim/Brea/Fullerton/Garden Grove/more to be added) Thousands of Americans have this New Disease....Please step up and be counted!!!!! so email me or let me know what you guys/gals think about this, I will wait for responses 1st before making the flyers so Email me right away to let me know, okiieee!!!!! I truly don't want to wait on this, and I mghit be forgetting something, all input is appreciated....I'm taking this bull by the horns!!!!!!!
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Post by binarky on Aug 10, 2005 14:55:41 GMT -5
wolfe1, please email if you can. My email address is brigitte1994@netzero.com
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Post by binarky on Aug 10, 2005 14:57:59 GMT -5
Wolfe1, Can you tell me if the vet gave you any meds?
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Post by Purple Haze on Aug 10, 2005 17:39:52 GMT -5
To All: After really suffering from acute Morgellons and being told for two years that I was delusional, stressed, seeking attentioin, I came upon a Doctor William Harvey who is located in Texas, by way of a Delusions of Parasitosis search on the Web. The web site is: www.rgj.com/news/stories/html;2004/05/08/70309.php. Sorry I don't know how to send you there. Anyway, he was able to diagnose me as being infected with Borrilia, Babesia and Bartonella. I believe that Morgellons is bastardized Lyme. Insurance companies will pay for treatment if you have these entities, but if I were you I wouldn't mention either Lyme or Morgellons. Page 5 is most noteworthy. I have also been to 7, yeah count 'em, 7 dermatologists, who basically said that I an nuts and in need of attention. Pshaw, prior to this blight, I was by everyone's standards really good looking with really nice hair. Now I have neither. My next stop will be to a Veterinarian, as Dr. Harvey works with them and they are more familiar with our skin problems, albeit as they pertain to animals. But we are also. Bless us all and good luck!
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Post by bb on Aug 10, 2005 20:42:44 GMT -5
tonym, that is a great idea. I found five people by placing an ad in the newspaper.
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