|
Post by greta on Aug 10, 2006 17:26:54 GMT -5
I just found this posted on the Lyme board and figured I'd repost it here for everyone: Hello! My name is Tiara and I'm a student at Richland College in Dallas, TX. I am currently writing a research paper on Morgellons and would like to interview anyone who wants to get more education out to the oublic about the disease, because the ignorance from what I am seeing seems to be overwhelming. I have an increased interest in this because not only do I work in a pharmacy, I am going to school to be a professional in the field, and I do believe that this is serious and could have grave implications if this disease is not recognized. 1. When did you develop the disease? 2. Were you in a particular setting, or doing something that prompted "infection" ( I say infection because there is so much uncertainty as to what it is, infectious or something else), like doing something outdoors, etc.? 3. How long have you had Morgellons, and how have you dealt with the disease? 4. What is your response to the health communities lack of acknowledgement of Morgellons? Delusional Parasitosis? 5. What do you think of doctors quickness to dismiss patients as delusional? 6. What medicines and treatments have helped you; which work best? 7. What would you like to see accomplished in the next year with this disease?
If I could get anyone to complete this and send it to my e-mail address (tiaracherrelle@hotmail.com)it would be greatly appreciated. Thanks!
|
|
|
Post by See Jane Crawl on Aug 10, 2006 20:40:06 GMT -5
Greta,
Did you send your info to her?
|
|
|
Post by flutterby on Aug 10, 2006 20:56:55 GMT -5
It's nice for people to offer to help us. I still cannot help but be cautious and rely on established, credible media, whatever avenue, tv, radio, newspring, etc. Like with our story being aired on Primetime, the ABC programming staff met with and consulted with Ken Cowels, Our Media Director. I believe, we still need to be cautous.
JIMO.
God Bless, Love, Flutterby
|
|
leighann
Full Member
Morgellon's - The point where Nature and Man collide...
Posts: 158
|
Post by leighann on Aug 10, 2006 22:41:57 GMT -5
I'm sorry to say that this is reinventing the wheel, so to speak. I have a great amount of information from alot of our members. I'm VERY VERY PARTICULAR who even knows I have this confidential info. I'm protecting the info as though it's my own. Just want those who submitted the info to me that I am only willing to share this someone who will help us and not abuse it. I have not stopped in my drive to get help. I'm about to lose my entire family. I'm not stopping for one second.
|
|
|
Post by greta on Aug 10, 2006 23:54:48 GMT -5
yes, i responded, as follows:
1. When did you develop the disease? Not sure if its a disease, because I have no evidence its causing organ failure or otherwise impairing my normal physiological function, but i got a sever fiber infestation and bad lesions in June 2005, I had minor symptoms for several years prior.
2. Were you in a particular setting, or doing something that prompted "infection" ( I say infection because there is so much uncertainty as to what it is, infectious or something else), like doing something outdoors, etc.? No.
3. How long have you had Morgellons, and how have you dealt with the disease? I do not know how long I've had Morgellons or if its a "disease", I delt with it poorly at first, but much better now.
4. What is your response to the health communities lack of acknowledgement of Morgellons? Delusional Parasitosis? I never thought I had bugs, so never was diagnosed with Delusions of Parasitosis. I understand the health communities lack of understanding. This condition defies knowledge.
5. What do you think of doctors quickness to dismiss patients as delusional? I was shocked when my primary care physician told me - WITHOUT PHYSICALLY EXAMINING ME - that I was just "imagining" that stuff was coming out of my skin and about all the lesions - that I was just, "doing this to myself." She immediately made an appointment for me to see a psychiatrist. She refused to refer me to a dermatologist! Willing to accept any help I could get - I went to see the psychiatrist. The psychiatrist sent me to a dermatologist! The dermatogist sent me back to the psychiatrist. The psychiatrist examined my skin and could see the fibers and black specks. He called microbiologists, microscopists, a different dermatologist, an infectious disease specialist, and more. Most were dismissive of him too. My psychiatrist put me on antibiotics, not antipsychotics.
6. What medicines and treatments have helped you; which work best? Doxycycline works the best to supress the symptoms. I hardly have any fibers while I'm on it and NO lesions.
7. What would you like to see accomplished in the next year with this disease? I would like to see the cause discovered and a cure.
|
|
mrsck
New Member
Posts: 27
|
Post by mrsck on Aug 11, 2006 7:35:07 GMT -5
It's nice for people to offer to help us. I still cannot help but be cautious and rely on established, credible media, whatever avenue, tv, radio, newspring, etc. Like with our story being aired on Primetime, the ABC programming staff met with and consulted with Ken Cowels, Our Media Director. I believe, we still need to be cautous. JIMO. God Bless, Love, Flutterby Flutterby One of the first articles wrote about Morgellons was in POPULAR MECHANICS so what does car engines, gas, etc have to do with morgellons. I hope and pray every magazine, newpaper, ezine and even the "peanut-butter club newsletter" if there is one will write an articles. We have a student looking into morgellons - lets support her - her paper may bring her College into this for research. Won't it be great to have EVERY COLLEGE IN THE USA DOING Research? Coast to Coast contacted Cowles - but he felt they were WAY TO FAR OUT THERE - But the people THAT did Coast to Coast it started other media to look into it. We really don't "I feel" stop any media from happening no matter who it is.
|
|