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Post by skylark99 on Nov 30, 2010 12:30:37 GMT -5
Maine, although I am in Europe at the moment. As we say, yah cahn't get theyah from heah, deah.
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Post by bannanny on Nov 30, 2010 13:33:21 GMT -5
ahhhhh, thank you right back honey!
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jo
Junior Member
Posts: 94
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Post by jo on Nov 30, 2010 15:58:59 GMT -5
Hello my busting buddies! I've been asked to contrbute to this and thought I'd give rough details on Morgellons in the UK. We are developing four support groups: Ireland (North/South) Scotland Northern England London A group for Wales and the south west is yet to form. We only have about 50 households registered, but are in contact with approx 150 households. We get on average 2 new referrals a week. IF YOU ARE A UK MORGIE BUT HAVE NOT REGISTERED, PLEASE DO! www.morgellonsuk.org.uk/research_reg.htmIn conjuction with your very own Violet and others, we are just finalising a leaflet for the general public. More on this shortly! Finally, we have a strategy for cross group working, which may be useful (below). Love yas Jo xxx Morgellons UK
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Post by tamikobe on Nov 30, 2010 16:24:11 GMT -5
San Diego, California
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Post by 22122agin on Nov 30, 2010 17:30:56 GMT -5
California
I strongly concur with glennb's statement on the CDC two posts below this one.
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Post by See Jane Crawl on Nov 30, 2010 19:04:52 GMT -5
Arizona
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Post by glennb on Nov 30, 2010 19:48:43 GMT -5
I don't think that the CDC has ever had any intention of helping us.
I live in Northern California.
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Post by ibzahp on Nov 30, 2010 20:32:31 GMT -5
I recieved an email about leaving my state and city but link didnt work. I have already left my info here.
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Post by tenchantre on Nov 30, 2010 22:11:53 GMT -5
Ohio
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Post by muriel on Nov 30, 2010 23:06:50 GMT -5
What state do you live in? The link doesn t work... I live in Perth Western Australia Email: coord1@live.com.au
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Post by carolyntittle on Dec 1, 2010 0:02:30 GMT -5
I live in the mountains of upper east Tennessee. I do not know anyone to share my nightmare with. I am alone in the disease other than marc neuman who is kind enough to e mail me and call me. I don't know how I could have survived without his help!
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jruss
New Member
Posts: 1
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Post by jruss on Dec 1, 2010 1:52:05 GMT -5
Carlsbad, California. I tried to respond to: lymebusters.proboards.com/index.c....ad=14456&page=1 but all I got was an error message. So I went around and came in the FRONT DOOR! I have had 3 medical doctors tell me that there is no such thing as Morgellons. Even typing it gives me a red underline. By avoiding genetically modified food, aspartame, trans-oils & fats, and MSG, most of the symptoms have gone away. My new general doctor prescribed an expensive Bactroban Cream, but it didn't seem to do anything. I bought some iodine tincture USP and it seems to help sores heal. I have not found a permanent cure.
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Post by matthew on Dec 1, 2010 9:02:33 GMT -5
Champaign, IL... Would like to form a support group in the Champaign/Urbana area. Matthew
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Post by matthew on Dec 1, 2010 9:27:07 GMT -5
While visiting the Bay Area in California, I experienced a massive "break-out" (where the tip of my nose explodes with blood & fibers, and the lesions all over my body open up and ooze) I decided to visit the Kaiser Research department in Oakland. After pleading with the receptionist, the head of research personally came out to talk with me. While not looking at me directly in the eyes, he informed me that "the research had ended and that they had found... nothing". Nothing? Really? Even a statement of "you all are crazy" is something. I consider myself a very good judge of reading the body language of others, and in my opinion... he was not telling me the truth. Once the "actor" parroted the well rehearsed statement, he looked at me straight in the eye with great compassion and said, "Please take care of yourself and stay as healthy as you possibly can". I understood this as he knew something that he could not tell me.
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garin
New Member
Posts: 6
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Post by garin on Dec 1, 2010 12:57:35 GMT -5
Fayetteville, Arkansas
Have had Morgellons for at least 38 years, probably more. That would mean that I got it in Texas or Arkansas. Could have gotten it from a person whose father was a chemical engineer in Texas who died young or from someone from California who was in prison in Arkansas in the early 70s.
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Post by bannanny on Dec 1, 2010 13:28:43 GMT -5
Now we're cookin guys! I see 7 new names here I've never seen before!! I don't know if it was pdidit or ant who sent that email out, but it was the best idea ever... and it's working to bring everyone together!! YaaaaaaaaaaY!!!
I'm so glad you have Marc in your life carolyntittle... he's an amazing person! There's a great family here at LB too... you'll find all the love and support you need! I also wanted to say I think you're right matthew... and I think Kaiser has been told NOT to say anything at all about their study. Especially since their part in this is done and it's now been turned over to the US Armed Forces Division of Pathology. So if it were nothing... they sure wouldn't have taken the study over right? Right!!
big hugs to all ~~ bannanny
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jimaz
New Member
Posts: 9
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Post by jimaz on Dec 1, 2010 15:43:04 GMT -5
don't frequent the site much anymore. seems like nothing changes but the names. but definitely a good idea, count me in. Phoenix, AZ
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Post by 22122agin on Dec 1, 2010 16:43:48 GMT -5
Pdidit, I would start a separate thread for your excellent post below so those who want to state their case "why not" can say if they want: (though it might be too late now maybe, we can still delete our posts on this topic. "For those who shy away from disclosing any info--if you are unable to and/or are against revealing your location, it is certainly your decision and there will be no judgment held against you; but for the purposes of this thread--the ultimate goal being to gain a momentum for recognition of this disease by gathering in organized groups in localized regions-- I think it would be helpful if you wouldn't mind, to could please indicate the reason why you do not want to participate. This could give a greater understanding as to why we can't seem to get cohesiveness especially if we can't indicate the mounting numbers of people afflicted. Like I said, think we need high numbers of people coming together to have any impact and bring this topic to the forefront in the news. Don't think anyone will pay attention to 10-12 people. So if you feel inclined, please pass this link on to others you know who have this disease so that they too, can participate if they wish to do so. Anyway, have an idea to throw out there for getting more recognition and have also posted this in the CDC thread. Think maybe we could shoot for having a quarterly pile of letters coming into the CDC or President Obama...like one month maybe it could be all of pictures of lesions or unsightly skin problems, titled, Would you want your children to get this?...maybe another month would be what it has done to us personally...or siting articles written about AIDS too, and how this was ignored which allowed it to quickly spread across the world www.highbeam.com/doc/1P2-1351828.html. Each quarter something different and then see if we could get a reporter interested that would be willing to stick their neck out and follow this movement. I don't know if we could pull this kind of organization off though, if we don't have groups to discuss and report back to other groups. If anyone has another idea, I would welcome your comments. I know this is a huge task to take on and it is easy to get discouraged with what we are up against, but think we have to fight this feeling of being defeated. We have to start somewhere...right? Then hopefully more discussion will evolve into something productive."
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Post by 22122agin on Dec 1, 2010 16:54:40 GMT -5
[ "For those who shy away from disclosing any info--if you are unable to and/or are against revealing your location, it is certainly your decision and there will be no judgment held against you; but for the purposes of this thread--the ultimate goal being to gain a momentum for recognition of this disease by gathering in organized groups in localized regions-- I think it would be helpful if you wouldn't mind, to could please indicate the reason why you do not want to participate. This could give a greater understanding as to why we can't seem to get cohesiveness especially if we can't indicate the mounting numbers of people afflicted. Like I said, think we need high numbers of people coming together to have any impact and bring this topic to the forefront in the news. Don't think anyone will pay attention to 10-12 people. So if you feel inclined, please pass this link on to others you know who have this disease so that they too, can participate if they wish to do so. Anyway, have an idea to throw out there for getting more recognition and have also posted this in the CDC thread. Think maybe we could shoot for having a quarterly pile of letters coming into the CDC or President Obama...like one month maybe it could be all of pictures of lesions or unsightly skin problems, titled, Would you want your children to get this?...maybe another month would be what it has done to us personally...or siting articles written about AIDS too, and how this was ignored which allowed it to quickly spread across the world www.highbeam.com/doc/1P2-1351828.html. Each quarter something different and then see if we could get a reporter interested that would be willing to stick their neck out and follow this movement. I don't know if we could pull this kind of organization off though, if we don't have groups to discuss and report back to other groups. If anyone has another idea, I would welcome your comments. I know this is a huge task to take on and it is easy to get discouraged with what we are up against, but think we have to fight this feeling of being defeated. We have to start somewhere...right? Then hopefully more discussion will evolve into something productive." [/quote]
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Post by 22122agin on Dec 1, 2010 17:04:48 GMT -5
This was a nice statement that maybe we should give a separate thread to for those to express their views though the thread is well underway now. 22122 Just thought I would add this as an afterthought: For those who shy away from disclosing any info--if you are unable to and/or are against revealing your location, it is certainly your decision and there will be no judgment held against you; but for the purposes of this thread--the ultimate goal being to gain a momentum for recognition of this disease by gathering in organized groups in localized regions-- I think it would be helpful if you wouldn't mind, to could please indicate the reason why you do not want to participate. This could give a greater understanding as to why we can't seem to get cohesiveness especially if we can't indicate the mounting numbers of people afflicted. Like I said, think we need high numbers of people coming together to have any impact and bring this topic to the forefront in the news. Don't think anyone will pay attention to 10-12 people. So if you feel inclined, please pass this link on to others you know who have this disease so that they too, can participate if they wish to do so. Anyway, have an idea to throw out there for getting more recognition and have also posted this in the CDC thread. Think maybe we could shoot for having a quarterly pile of letters coming into the CDC or President Obama...like one month maybe it could be all of pictures of lesions or unsightly skin problems, titled, Would you want your children to get this?...maybe another month would be what it has done to us personally...or siting articles written about AIDS too, and how this was ignored which allowed it to quickly spread across the world www.highbeam.com/doc/1P2-1351828.html. Each quarter something different and then see if we could get a reporter interested that would be willing to stick their neck out and follow this movement. I don't know if we could pull this kind of organization off though, if we don't have groups to discuss and report back to other groups. If anyone has another idea, I would welcome your comments. I know this is a huge task to take on and it is easy to get discouraged with what we are up against, but think we have to fight this feeling of being defeated. We have to start somewhere...right? Then hopefully more discussion will evolve into something productive. xx Pdid
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