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Post by fritolay66 on Mar 31, 2010 20:13:25 GMT -5
Very wise words. Kinda makes ya wanna puke doesn't it?
Sunny,
I am glad the conference went well, and that you were able to make some connections. I was also happy to see Joni Mitchell mentioned. I read the questions earlier, and I guess I would like to hear some feedback from you on these. Thanks.
Frito
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Post by Sidney on Mar 31, 2010 21:35:26 GMT -5
All that ever matters is the truth. Rumors should never be believed or spread. The truth is that today (March 31, 2010), when Dr. Vitaly Citovsky was asked about grants for Morgellons, he replied: "Not true. I have not applied for any grants related to MORGELLONS." KMarie, I actually should have emphasized AGROBACTERIUM rather than Morgellons. I was told he had submitted a grant for additional studies related to Agrobacterium. It was a joint assumption among Morgellons patients that since those tested for Agrobacterium had "Morgellons" that a grant was needed to supply the necessary funds to look into the link between Agrobacterium and Morgerllons. I apologize for not making myself more clear. Edit to remove response as is from within original quote
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Post by Sidney on Mar 31, 2010 21:50:13 GMT -5
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Post by bannanny on Mar 31, 2010 21:53:57 GMT -5
Speaking of Mark Darrah... I still have the same email address I had for him when he took my scope to study the growth on it. We spoke about it a couple of times while he was waiting to get back into a lab which was supposed to be soon. Then we simply lost touch until a few months ago and again this week when I emailed him to get an update. He hasn't answered me tho so I'm wondering if his email has changed... altho the 2 I've sent haven't come back so they must've been delivered. If you know of a different way for me to get in touch with him Kmarie, will you let me know. Thanks...
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Post by kmarie on Mar 31, 2010 23:25:12 GMT -5
Sid,
No need for apologies!
Dr. Citovsky said he has Several Grants for "Agrobacterium research."
He then stated that he has not applied for any grants "RELATED TO MORGELLONS."[/b]
Dr. Citovsky said he doesn't know why he is on the Scientific Advisory Panel for the Charles Holman Foundation/NMO because he tells everyone that he does not do morgellons research.
I hope that helps clear up any confusion.
Kmarie
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Post by Sidney on Apr 1, 2010 8:51:03 GMT -5
Thank you, KMarie. I swear sometimes I think I wake up in a new world every day!
Seems every day there's a new revelation, new drama, more deceit, deception, confusion, accusations, paranoia.
Sorting through to the truth is all we want and I appreciate you cleared up some of my own misconceptions. Thanks.
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Post by friskers on Apr 1, 2010 12:51:28 GMT -5
These kind of miscommunications happen all the time in life.Not just in morgellons communitys. Try not to let it upset you SID That is why most of the time I say to myself' this may or may not be true" especially when someone interprets their perception of what someone said . anyway thats why I like to remain clueless about most everything to do with morgellons LOL funny but its true. Im happeir that way. I will never forget the game phone tag we would play as kids. You start with a short story and wisper it to another and continue to however many are playing the game . The first story usually gets so screwd up by the time it hits the last person its quite funny(and disheartening ) how storys get changed by many word sof mouth . Add brainfog and mogellons to the mix and well its gets to be a real mess!
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Post by jj on Apr 6, 2010 11:43:26 GMT -5
Hi Sunny Hope your home and rested. Looks as though there are some questions and a little confusion It would be great if you can clearify a few things if possible. Thanks for everything. JJ
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Post by kmarie on Apr 6, 2010 12:38:11 GMT -5
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Post by toni on Apr 6, 2010 13:40:12 GMT -5
Sunny,
On page 1 - ( I clarified some of my concerns in regards to your comments) in pink type. I didn't change anything, just added to it.
I'd re read my post, and it was a bit awkwards in reading, because I had the questions in my mind, but didn't specify them to where it made total sense to just read it.
Hope it's clearer and understandable in my questions brought forth by your comments about the Agrobacterium.
I suppose a few reasons for my GREAT concern about this is because:
I've heard, that 97% of us Morgies test positive for Lyme.
That has "generated a hand in hand" observation/connection with Morgs to this point in time.
As for the Agro tests on 5 or 8 morgies biopsied - either all 5 or all 8 that tested, they ALL tested positive for the agro. (( That is 100% bingo ))
So "imho" 100% positives logically should generate moreso of a curious investigation than even the lyme, if we just go on numbers - which seems a logical way to establish anything, since that's why these tests are done in the first place.
That's why I'm wondering "greatly" of your posted comments, if Dr Wymore's comments on Agro are of recent? Or are they of over 3 years ago info?
Thanks.
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Post by Jill on Apr 6, 2010 20:42:13 GMT -5
Great questions everyone-
I hope that Sunny made it home from the conference ok.
Jill
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Post by Gwen "sunnyand7777" Simmons RN on Apr 12, 2010 11:56:09 GMT -5
Hello everyone, I apologize for such a delay in getting back. I stayed with a friend in Texas after the conference. I have been home just a short time. The trip for me was 1455 miles round trip via car. I can't wait to do it again next year! I honestly have a blur on so many details of the conference. This is such an emotional event. Many, like me, get virtually no support from family, friends or the medical community. This is one place I can be myself, talk about anything and everything without fear of being laughed at or get the eye-roll thing. I get my spirit refilled by meeting others from all over. The validation, acceptation, and love received (and given) is priceless. I have ordered the DVD to find out what I forgot. Every year when I watch it, I am surprised at how much I didn't remember. My morgie "brain-fog" prevents me from absorbing so much at one time. I hurried to jot down a few things for everyone who couldn't attend. I know what it is like to be waiting to learn ..."what happened?" Joni Mitchell: There was an announcement from the stage about Joni Mitchell having Morgellons Disease. I do not know any other details regarding Ms. Mitchell. I first learned of her issues with Morgellons via the Internet reports beginning last year. I am sad that she ( as well as anyone) has this dread disease and send my prayers. AGROBACTERIUM: This answer was in response to a question from the audience. Dr. Stricker responded, briefly, as I previously reported. He was part of this original effort. The issues with Dr. Citovsky are beyond my knowledge. I just attended the conference and am relaying what information was given. I did a Google search and found some links from the MRF website. They funded this study. Here are the links: www.morgellons.org/suny.htm and www.morgellons.org/research.htm . An article was published in Journal of Investigative Medicine: 1 January 2007 - Volume 55 - Issue 1 - p S123 "Contribution of Agrobacterium to Morgellons Disease" by Stricker, R. B.; Savely, V. R.; Zaltsman, A.; Citovsky, V. Dr. Wymore provided overhead projection slides regarding his research. I cannot recall specific dates for the data presented. He did say that agrobacterium (as well as many other things) did not show up in any of his analysis. I can certainly not speak for him nor would I ever try. Watching the DVD when it is available should provide more, if not most of the answers. His presentation should be on it with details that he explains. The surprise musical guest: Ginger Savely. She sang "True Colors" and was incredible. I did not realize she could sing so well. She sounds very similar to Kelly Clarkson, only better. There was a standing ovation when she finished. If she ever wants to retire from medicine, Ginger certainly would have a great career in music. Dr. Wymore was presented with a check for $10,000 from the Charles E. Holman Foundation for OSU Morgellons Research. This made a total of $21,000.00 they donated to OSU Morgellons research since the last conference (I believe that's right.) This was incredible news and a tearful, emotion-filled moment for all in attendance. CDC: I am trying to get more confirmation on the May meeting. If this is not the right one, there's no reason to rush to Atlanta. I sent an email requesting an agenda for the meetings set for May 19th and 20th. Since this is public record, it is supposed to be listed on their website. So far, it is not. As soon as I learn anything, I'll let everyone know. However, if anyone else learns anything, please let everyone know, as well. We're all in this together. I want to get well and get my life back, as does everyone else. We"re all soooo sick of being sooo sick. Well, that's the best I can recall. For others of you that were there, please help out with things you remember. Anyone is welcomed to email at sunnyand7777@yahoo.com. Like I said, when the conference DVD is available, we can all watch and get more details and discuss the issues. But, I hope I have helped until then. Sunny
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Post by Sidney on Apr 12, 2010 12:25:54 GMT -5
Thanks, Sunny. Well present ed. Haven't checked your links yet, but appreciate the synopsis of the meeting.
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Post by toni on Apr 12, 2010 13:07:06 GMT -5
Sunny posted: AGROBACTERIUM: This answer was in response to a question from the audience. Dr. Stricker responded, briefly, as I previously reported. He was part of this original effort. The issues with Dr. Citovsky are beyond my knowledge. I just attended the conference and am relaying what information was given. I did a Google search and found some links from the MRF website. They funded this study. Here are the links: www.morgellons.org/suny.htm and www.morgellons.org/research.htm . An article was published in Journal of Investigative Medicine: 1 January 2007 - Volume 55 - Issue 1 - p S123 "Contribution of Agrobacterium to Morgellons Disease" by Stricker, R. B.; Savely, V. R.; Zaltsman, A.; Citovsky, V. Dr. Wymore provided overhead projection slides regarding his research. I cannot recall specific dates for the data presented. He did say that agrobacterium (as well as many other things) did not show up in any of his analysis. I can certainly not speak for him nor would I ever try. Watching the DVD when it is available should provide more, if not most of the answers. His presentation should be on it with details that he explains. Thank you Sunny for responding. How can I say this nicely (I am) it just may not sound that way though in typing.
This doesn't really answer my question because the last thing Dr. Stricker to my knowledge has stated is this:
Conclusions: Our preliminary results indicate that Agrobacterium may be involved in the etiology and/or progression of Morgellons disease. If these results are confirmed, it would be the first example of a plant-infecting bacterium playing a role in human disease.
Further testing is ongoing to validate this observation and to determine whether Agrobacterium not only resides in the infected areas, but also transforms them genetically. This is what I was wondering (if you knew) since I'm asking only because of the comments made in your original post. It "implied" further study had been done, which is why I became curious IF the comments made at the conference were from (new news) which could only take place had "continued/futher study been done". If no further study has been "continued" then this is the lastest info to date on the Agrobacterium, right?
Because to date (this is the only "newest" news out there) in regards to what Dr. Stricker and others have said and this comes from:
[glow=red,2,300]SUNY FINDINGS
Contribution of Agrobacterium to Morgellons Disease. RB Stricker, VR Savely, A Zaltsman, V Citovsky
Research Update, January 14, 2007 Vitaly Citovsky, Ph.D.[/glow]
Our continuing screen of additional Morgellons patients has identified Agrobacterium genetic material in three additional individuals. Thus, all Morgellons patients screened to date have tested positive for the presence of Agrobacterium, whereas this microorganism has not been detected in any of the samples derived from the control, healthy individuals.www.morgellons.org/suny.htm
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Post by jj on Apr 12, 2010 13:11:16 GMT -5
Hi Sunny Good to hear you made it home safe. I do understand how taxing these trips can be. Thank you for elaborating further and helping clarify some things. We appreciate it. Sunny, if you could elaborate ……… will there be a public dedication (written or otherwise) from Joni that you are aware of or that you could ask of the person relaying the message? Other than numerous discussions of appreciation, to date this from MDR is all that was found. I believe it is from a transcript from the 2009 conference. Is it possible that the below was misinterpreted as a dedication from Joni somehow? www.morgellons-disease-research.com/Morgellons-Message-Board/morgellons-syndrome/4928-dr-amy-withington-2nd-annual-morgellons-conference.htmlLike you and others I am always sorry to hear of new sufferers and that would include Joni Mitchell. Your original message about a dedication of past work by Joni was a very special message and one we were extremely grateful for as well as it making quite an impression on us all. I look forward to hearing more from Joni and that she is on the mend. Thank you again JJ
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Post by Gwen "sunnyand7777" Simmons RN on Apr 12, 2010 15:18:12 GMT -5
JJ,
The post you pasted from the MDR site regarding Joni might just be the stimulus for this year's reference. I had totally forgotten that from 2009. Good find JJ!
Sunny ================================ Toni,
There was no discussion. This was a quick, brief answer by Dr. Stricker in response to a question from the audience during the Q & A panel session (morning). Dr. Wymore's presentation was given much later in the day (afternoon). The answer you want may be on the DVD as he discusses his research data. I wish I could be of more help.
Sunny
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Post by toni on Apr 12, 2010 16:00:48 GMT -5
Thanks Sunny ;D
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Post by Jill on Apr 12, 2010 17:14:20 GMT -5
Hi Sunny,
I am also glad to read that you made it home safely.
Somewhere on one of the threads, I had asked about Dr Greg Smith and his speech. Did he or anyone else mention his treatment?
It has been posted several times that he was DX'd with Blastomycosis and treated for the same. Is it safe to assume that it ( Blasto) is related to Morgellons?
Thanks in advance,
Jill
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Post by Sidney on Apr 12, 2010 18:32:48 GMT -5
Excellent question, Jill. I'd like to know too. Haven't heard anything about Dr. Greg Smith in a long time other than he was going to speak at the 2010 Conference in Austin, and that he's regained some of his lost weight. I hope he's making an excellent recovery.
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Post by kmarie on Apr 12, 2010 19:59:26 GMT -5
Joni Mitchell sent a message to everyone. Please read her song lyrics "Sire of Sorrow" which she dedicated to Morgellons patients everywhere. JJ,
The post you pasted from the MDR site regarding Joni might just be the stimulus for this year's reference. I had totally forgotten that from 2009. Sunny, Are you saying that the Joni Mitchell "dedication" you posted here on LB might just be the stimulus for this year's now "reference" of Joni Mitchell which came from what a speaker stated at the 2009 Austin conference? Please bear with me as I am trying to clarify if this was a "dedication" or a "reference" regarding Joni Mitchell this year. Thank you, Kmarie
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