|
Post by Gwen "sunnyand7777" Simmons RN on May 2, 2012 3:59:27 GMT -5
Exciting New Discoveries in Morgellons Research Unveiled at Annual Conference Panel of experts bring new perspectives to Morgellons Research. [/center] tinyurl.com/6lz8j4q tinyurl.com/6u36pdjGwen/ Sunny
|
|
|
Post by dc10801 on May 3, 2012 14:17:07 GMT -5
Disappointed this info doesn't seem so readily available or shared, unless you were in attendance or you purchase a DVD. Nobody posting anything, in any kind of detail, on any forums about specifics. All I see are teasers for purchasing the DVD. If it was all about helping folks learn about Morgellons, what would be the harm sharing the info on youtube? If folks had the cash and did appreciate what you guys are doing they'd donate the fifty bucks for the dvd's anyway. All you're doing is denying the folks who are suffering access to info on the condition you guys are advocating for.
Used to be we were all in this together, now seems more like there's insiders and outsiders. Sorry if I seem a bit critical.
|
|
|
Post by bb on May 3, 2012 17:51:04 GMT -5
Dear dc10801, You must have missed the link to the exciting research: www.ncbi.nlm.nih.gov/pmc/articles/PMC3257881/The DVD's of the conference have always been for sale, with the proceeds going to help all of us. Please don't be offended by any of this, and no one will miss your post if you choose to delete it. And I'll delete mine as well. I'm only posting this so anyone who saw this doesn't misunderstand as well. We are all in this together, though at times it doesn't feel like it.
|
|
|
Post by morghunter on May 3, 2012 20:40:28 GMT -5
Hi Gwen, dc and bb. Just went over the presentation and noticed what I believe is a glitch. "Figure 3" appears to be a picture of bovine fibers and not morgellons. I have never,in fourteen years of observation,seen morgellons fibers that looked like these. A small detail but confusing to someone looking for clues as to what is making them so ill. Later morghunter
|
|
|
Post by lostintime on May 3, 2012 21:03:42 GMT -5
The hypothesis of bovine digital dermatitis and morgellons disease was presented in the Dove Press just over a year ago. Nothing new about this theory and as of late it is still only a theory. The scientific data supporting this clam was to be published shortly after but I have yet to see it published.
Yaws, syphilis, pinta and bejel are all subspecies of Treponeoma. If you had any of these you would not go see a Lyme doctor. I guess the point is, the alignment of morgellons with Lyme disease is not in the best interest of people suffering with morgellons disease. I am highly skeptical to any connection with lyme disease at all. The purpose of providing the CD,s is to give people the opportunity to see and hear the conference that could not attend. As for the statements made by dc10801, he is correct. Morgellons disease being one of the biggest new medical diseases in over thirty years deserves to be shared with the public. It appears there is no new information to be had or it would be out in the main stream media, not the Dove Press or a conference CD.
|
|
|
Post by bb on May 4, 2012 8:43:19 GMT -5
The conference updated the world on the research since the last conference. All of the research is new and exciting, even if it had been previously reported elsewhere. Nothing has been proven, no earth shattering news or validation, but we do have folks trying to discover the cause of our infection/infestation. I, for one, appreciate the hell out of that.Did you read about the Dermatologist that is on board with us? That is exciting too! We have one convert from the ranks of worst medical profession in regard to Morgellons. Why be so down on the ONLY folks trying to help us? Certainly, they can't force the media to make a big story out of this. And no one is trying to profit from selling the research.
|
|
|
Post by Lynn on May 4, 2012 13:18:11 GMT -5
BB
Hi would you please tell me about the converted dermatologist. What changed that persons opinion to believe in this disease. This is good news.
In Light Lynn/TorpedoLynn
|
|
|
Post by bb on May 4, 2012 17:25:11 GMT -5
Sure. It's in Gwen's first link:
"Australian Dermatologist, Peter Mayne, showed clear slides of fibers taken from some of his many Morgellons patients, noting that fibers are subdermal in origin and some originate in the hair bulb. Dr. Mayne is the first practicing dermatologist to thoroughly examine the tissue of Morgellons patients and acknowledge the disease's unique pathological characteristics. Mayne outlined differential diagnoses he considers in his Australian clinical practice. Dr. Mayne, along with Randy S. Wymore, PhD., Director of Research at the Center for the Investigation of Morgellons disease, reviewed the history of the CDC’s noninvolvement with Morgellons disease, and refuted the 2012 CDC/Kaiser study results. A presentation on Institutional Cognitive Dissonance by CEHF Director, Cindy Casey, RN, in collaboration with Elizabeth Rasmussen, PhD, further demonstrated the repudiation by the CDC in its lawful responsibilities towards Morgellons patients as well as to their confused and bewildered medical care providers. "
|
|
|
Post by itchin4answers on May 4, 2012 17:40:07 GMT -5
Dr Peter Mayne became a Dermatologist in 2005. Maybe reading about Morgellons led him to do the training. I am only guessing, I didn't have that opportunity to ask him during our one hour consultation at the end of February 2012.
Unfortunately for me, the doctor never examined my skin. It is good to have a Dermatologist on board with this, however I've met him and he is currently making a complete mess of my treatment. So I'm not feeling very confident about him at all.
Sorry, not wanting to put a downer, just telling the truth.
I did say in a post somewhere after seeing this doctor and getting a diagnosis that he did touch my skin. Yes, he touched my face because I made him. I said the fiber infestation in my face was beyond bearable. I mentioned Morgone Gel and the F6/7 to break down the cellulose fibers. He was adamant that the fibers were not cellulose. He said that the fibers were Keratin and that the spirochete sits at the base of the hair follicle and makes Keratin fibers. A person feels movement because this fiber has no where to go and can not push through the skin.
Sounds ok in theory for those of us with Lyme. It doesn't explain anything for those that do not have Lyme. It doesn't explain the coloured fibers I have had and it doesn't explain the fibers in my face, neck and scalp that run along my face in all directions.
I am a little peeved to say the least as I do believe "this" is all about money and accolade. I have no concerns saying that here because I did tell the doctor that in a letter not so long ago when I was complaining about his fees and what did I have to show for it? nothing.
I paid a fortune for a phone consult to be given directions about treatment, which I could not remember. My GP got all the directions in a letter to him which took over a week to arrive. I was supposed to take 1/2 (150mg) of Rimycin when in fact I followed the directions on the bottle by the dispensing chemist. So I ended up taking 4 times more than I should of done. Any wonder I felt unwell. Besides, the doctor has prescribed capsules and how does he expect me to 1/2 a capsule?
Need I say more.
|
|
|
Post by dc10801 on May 5, 2012 4:21:22 GMT -5
Hey if you don't agree with me that's fine bb...but as far as suggesting I consider deleting my post...hell no...I think before I post and if I didn't mean what I wrote I wouldn't have hit enter. Maybe I don't think the way you do...but this is a forum...people aren't always going to think alike.
|
|
|
Post by bb on May 5, 2012 8:11:28 GMT -5
There are a handful of people in this entire world TRYING to help us, and trying to figure this out. Let's line them up and shoot them in the foot. Then let's see who else will step up and do anything to help us.
Yes, we can agree to disagree but I'm entitled to my opinion too. I suggested deleting your post only because I thought you misunderstood and had missed that link on the research. I was concerned about embarrassing you publicly but wanted to try to clarify that the research was there for no charge in case anyone else didn't see it. I tried to be as polite and soft as possible, even calling you "dear". That is all, I didn't mean to offend you or anyone.
itchin, I'm sorry that the derm hasn't helped you. I'm sure he doesn't really know how to treat this. He sure could be more professional about it and shouldn't be charging excessively.
|
|
|
Post by bb on May 5, 2012 9:13:50 GMT -5
Hi Gwen, dc and bb. Just went over the presentation and noticed what I believe is a glitch. "Figure 3" appears to be a picture of bovine fibers and not morgellons. I have never,in fourteen years of observation,seen morgellons fibers that looked like these. A small detail but confusing to someone looking for clues as to what is making them so ill. Later morghunter morghunter, I have seen the "star" shaped fibers early in my infection/infestation. Others have mentioned it too. Just FYI. I also saw spiral shaped creatures in my environment, some large enough to easily see with my eyes. The only way I can describe it is, it looked like a nerve with appendages coming off it all the way down, and narrowing down at the end. Very freaky stuff. Another early experience proved to me that "they" are multi-shaped and many colors. I had used the yeast enzyme product in my bath, and screened my bath water with my panty hose stretched over a wire hanger. I placed the panty hose/wire hanger on a plastic tub and left it there to dry while I was gone to work all day. I saw many colors and shapes. When I got home many hours later and looked at it, many of the things had crawled all over the plastic tub! I freaked out and threw the entire thing out in the yard. I'm sure that was a mistake and I sure regret not gathering them for evidence. I no longer see these things in my bath as I use many therapies to keep this scourge minimized some 97% from the early days of this hell. Anyone that would like a copy of my list of therapies and advice please send me a pm. I'd be happy to share.
|
|
|
Post by dc10801 on May 5, 2012 14:02:48 GMT -5
You said: Please don't be offended by any of this, and no one will miss your post if you choose to delete it. And I'll delete mine as well. I'm only posting this so anyone who saw this doesn't misunderstand as well. How would that not offend me..or anyone else for that matter, you are assuming there is nobody on the whole forum that has a different opinion than yourself. You suggested me censoring myself, why? Because I have a different opinion than yourself? You can word it as politely as you like...but that's still what you did.
|
|
|
Post by itchin4answers on May 5, 2012 17:27:20 GMT -5
itchin, I'm sorry that the derm hasn't helped you. I'm sure he doesn't really know how to treat this. He sure could be more professional about it and shouldn't be charging excessively. Hi bb, well no, he hasn't helped me with Morgellons at this stage. You know my mum said the same thing last night about his fees, she said "you'd think he'd only be too pleased to help"....I said "yes, for a price". Unfortunately, that is the way it is with a lot of things today. I am having treatment for the Bartonella, but as I said that has been messed up. So I will still be taking twice as much Rimycin as I should because he prescribed capsules and they don't seem to come in tablet form, if they did surely he would have prescribed them. I did hear that the Keratin theory came out 5 years ago. I think it is a little risky to be calling this a new theory. We the people with this disease are the ones that have suffered unthinkable things and our lives are still a mess to some extent. So I do believe it is important that we speak up. Thanks itchin
|
|
|
Post by bb on May 5, 2012 20:48:57 GMT -5
Disappointed this info doesn't seem so readily available or shared, unless you were in attendance or you purchase a DVD. Nobody posting anything, in any kind of detail, on any forums about specifics. All I see are teasers for purchasing the DVD. If it was all about helping folks learn about Morgellons, what would be the harm sharing the info on youtube? If folks had the cash and did appreciate what you guys are doing they'd donate the fifty bucks for the dvd's anyway. All you're doing is denying the folks who are suffering access to info on the condition you guys are advocating for. Used to be we were all in this together, now seems more like there's insiders and outsiders. Sorry if I seem a bit critical. Be offended then. I did my level best to be as nice about all of this as possible. I thought you had misunderstood. The research is there in a link, and in the article. No one is being denied access to the research. You do not have the buy the DVD to get the research, it's right there in the article. I'll not be responding to any more of this horse poop. I'm not here to argue with anyone, I just try to share what has helped me get 97% better.
|
|
|
Post by violet on May 6, 2012 13:33:10 GMT -5
Dr Peter Mayne became a Dermatologist in 2005. Maybe reading about Morgellons led him to do the training. I am only guessing, I didn't have that opportunity to ask him during our one hour consultation at the end of February 2012. Unfortunately for me, the doctor never examined my skin. It is good to have a Dermatologist on board with this, however I've met him and he is currently making a complete mess of my treatment. So I'm not feeling very confident about him at all. Sorry, not wanting to put a downer, just telling the truth. I did say in a post somewhere after seeing this doctor and getting a diagnosis that he did touch my skin. Yes, he touched my face because I made him. I said the fiber infestation in my face was beyond bearable. I mentioned Morgone Gel and the F6/7 to break down the cellulose fibers. He was adamant that the fibers were not cellulose. He said that the fibers were Keratin and that the spirochete sits at the base of the hair follicle and makes Keratin fibers. A person feels movement because this fiber has no where to go and can not push through the skin. Sounds ok in theory for those of us with Lyme. It doesn't explain anything for those that do not have Lyme. It doesn't explain the coloured fibers I have had and it doesn't explain the fibers in my face, neck and scalp that run along my face in all directions. I am a little peeved to say the least as I do believe "this" is all about money and accolade. I have no concerns saying that here because I did tell the doctor that in a letter not so long ago when I was complaining about his fees and what did I have to show for it? nothing. I paid a fortune for a phone consult to be given directions about treatment, which I could not remember. My GP got all the directions in a letter to him which took over a week to arrive. I was supposed to take 1/2 (150mg) of Rimycin when in fact I followed the directions on the bottle by the dispensing chemist. So I ended up taking 4 times more than I should of done. Any wonder I felt unwell. Besides, the doctor has prescribed capsules and how does he expect me to 1/2 a capsule? Need I say more. Itchie, thanks for catching us up on this guy. Did I read correctly in one of the articles that reported on the research meeting in Texas that "eminent" was placed before many of the docs' names? I didn't think it appropriate at all. Was stretching things a wee bit too much, think I. And I'm right with you on the face issue--trails/tunnels going from main lesion in neck to all over the face. It's awful, and there is very little stopping it short of tearing the face apart to scratch out all the granules. It does prevent more fibers from growing, which is helpful, but what a mess--and so much scaring.
|
|
|
Post by violet on May 6, 2012 13:42:39 GMT -5
The conference updated the world on the research since the last conference. All of the research is new and exciting, even if it had been previously reported elsewhere. Nothing has been proven, no earth shattering news or validation, but we do have folks trying to discover the cause of our infection/infestation. I, for one, appreciate the hell out of that. Me, too, bb!!! Did you read about the Dermatologist that is on board with us? That is exciting too! We have one convert from the ranks of worst medical profession in regard to Morgellons. Why be so down on the ONLY folks trying to help us? Certainly, they can't force the media to make a big story out of this. And no one is trying to profit from selling the research. Many at the conference do A LOT of work with no pay in their efforts to do everything they can towards research and getting the word out about morgs. This is a selfless group that works on the conferences each year, some of whom are very, very sick with morgs. Please don't diss them without realizing they are doing the hard work which will benefit us all. They always invite everyone to come to the conferences to be a part of it and ask questions/share/whatever. They are extremely collaborative and do not cover things up. Somehow money has to come from somewhere for the cost of DVDs and to put toward research that Dr. Wymore is overseeing. Just saying all of this as information--not for argument. :-)
|
|
|
Post by violet on May 6, 2012 13:46:24 GMT -5
itchin, I'm sorry that the derm hasn't helped you. I'm sure he doesn't really know how to treat this. He sure could be more professional about it and shouldn't be charging excessively. Hi bb, well no, he hasn't helped me with Morgellons at this stage. You know my mum said the same thing last night about his fees, she said "you'd think he'd only be too pleased to help"....I said "yes, for a price". Unfortunately, that is the way it is with a lot of things today. I am having treatment for the Bartonella, but as I said that has been messed up. So I will still be taking twice as much Rimycin as I should because he prescribed capsules and they don't seem to come in tablet form, if they did surely he would have prescribed them. I did hear that the Keratin theory came out 5 years ago. I think it is a little risky to be calling this a new theory. We the people with this disease are the ones that have suffered unthinkable things and our lives are still a mess to some extent. So I do believe it is important that we speak up. Thanks itchin Just by way of information, I've learned the hard way that that as soon as you hear a doctor quote a fee that is exorbitant, when they know we don't have insurance, walk away. My Johns Hopkins internist said she could start a morgellons practice out of her home and make much more money than she makes at Hopkins. It's unethical when doctors/nurses do this.
|
|
|
Post by bb on May 6, 2012 16:34:55 GMT -5
violet,
Thank you so much for speaking up. We would all be so much worse off if not for these folks carrying the torch. The research has to start somewhere, and theories developed or disproved. It sure can't be easy to put themselves out there like that. They do it for all of us.
I was interviewed for 3 days by a film crew from London almost 2 years ago. I dread the day that the story airs on Discovery (if it ever does). I live in a small community where I already am not accepted because I wasn't born here. These folks are going to have their noses even higher in the air than before. I did it for all of us in the morg community, but it will be hell on me and my family.
|
|
|
Post by dc10801 on May 6, 2012 18:34:13 GMT -5
In the above you had mentioned you where done with arguing...I was never arguing, just expressing a different view on things than you may have. Since you have decided to join in again, please allow me to respond. We would all be so much worse off if not for these folks carrying the torch. My quality of life hasn't been impacted for better or for worse yet by any thing that has or hasn't been done yet by anyone you are giving props too. Take a second to really think about it folks, maybe you'll agree, maybe you won't. There's a lot of theory, but nothing proven and nothing that has helped me get anywhere near recovering 100%. I do want to add one thing how come the dvd's are announced as having new and exiting info, but when I brought up the question as to why they won't share these new and exciting developments from the conference dvd's folks say it's easily accessible...it's the Bovine article from months ago...how is that "new and exciting"? Seems strange...one minute new and exciting...next...info's out there, been out there. So on one side I'm perturbed that I can't see whats new and exciting about a condition I've been dealing with for years...on the other hand info billed as "new and exciting" really isn't all that "new and exciting"
|
|