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Post by Gwen "sunnyand7777" Simmons RN on Apr 13, 2010 19:18:46 GMT -5
Dr. Greg Smith was indeed at the conference as one of the speakers. He looked wonderful and had gained back to a healthy weight. The last time I saw him was 2 years ago when he was very ill. It was a delight to see him so improved and full of life once again. Sorry, but I do not know about his medical issues other than the Morgellons connection we all share. Dr. Uppal presentated "Morgellons Case Studies". Sorry that I cannot remember much of the details. She had a slide presentation as well. The DVDs are not ready, yet. They should be hopefully by the end of next week. I tried to put up a couple of pictures I took at the conference, but have to figure out how. Sunny
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Post by ruth on Apr 15, 2010 9:42:03 GMT -5
i heard greg smith was treated for blastomycosis. did he share this information at the conference along with the protocol that has given him back his health? does he have a website with this information?
could he possibly be in on the same protocol that rhorn was privvy to?
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Post by Jill on Apr 15, 2010 11:27:44 GMT -5
i heard greg smith was treated for blastomycosis. did he share this information at the conference along with the protocol that has given him back his health? does he have a website with this information? could he possibly be in on the same protocol that rhorn was privvy to? I would have expected that as a board member of a non-profit organization there would be immediate input into the community. Without the members of the 'Community' - ie: numbers or statistics, there would be no platform to solicit FUNDS. No PR. No MEDIA. No recognition. Seems there is a moral obligation as well as perhaps other obligations to report any and all pertinent or relevant information in a timely manner. Could Anne Dill benefited? Could others? Scroll down to adill - her whole family was DX'd with Blasto: tinyurl.com/y7lzq42tinyurl.com/y7wp2zq
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Post by Sidney on Apr 15, 2010 13:11:36 GMT -5
Jill, if I ever knew about this I had totally forgotten.
We should also remember that the diagnosis could have been incorrect, but if it is an accurate diagnosis then what treatment protocol was set up for the family? How was Blastomycosis diagnoserd? Forgive me if the information is in the videos.
I haven't viewed the videos yet, just going by what you posted here and thank you.
I totally believe in full disclosure and we aren't getting anything from anyone that's new information or beneficial to any of us.
Rhorn's disclosure regarding his own treatment protocol and everything people share that alleviates's symptoms, strengthens the immune system, is greatly appreciated, but we continue to be kept in the dark other than the mold/fungus culture results thanks to Dr. Abbott and what we learn from one another.
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Post by Sidney on Apr 15, 2010 13:13:14 GMT -5
From MDR Board « Thread Started Today at 11:55 » -------------------------------------------------------------------------------- tinyurl.com/y7fkudpThis is interesting. I was looking for Dr. Citovsky's email address and ran across this at the MDR Board. Found this video too. vimeo.com/5778497 « Last Edit: Today at 11:58 by Sidney » Link to Post - Back to Top Logged -------------------------------------------------------------------------------- "I believe there is no source of deception in the investigation of nature which can compare with a fixed belief that certain kinds of phenomena are IMPOSSIBLE." -William James
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Post by Jill on Apr 15, 2010 13:46:02 GMT -5
Jill, if I ever knew about this I had totally forgotten. We should also remember that the diagnosis could have been incorrect, but if it is an accurate diagnosis then what treatment protocol was set up for the family? How was Blastomycosis diagnoserd? Forgive me if the information is in the videos. I haven't viewed the videos yet, just going by what you posted here and thank you. I totally believe in full disclosure and we aren't getting anything from anyone that's new information or beneficial to any of us. Rhorn's disclosure regarding his own treatment protocol and everything people share that alleviates's symptoms, strengthens the immune system, is greatly appreciated, but we continue to be kept in the dark other than the mold/fungus culture results thanks to Dr. Abbott and what we learn from one another. If you read the thread above, Anne stated that the doctors that diagnosed her family with Blasto- did not know how to treat it. Do not recall her exact wording and I have to run.
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Post by Sidney on Apr 15, 2010 18:44:39 GMT -5
Sorry this Nickthebuilder guy was treated rudely by Dr. Citovsky or anyone else for that matter, but that other stuff about the "Organizations" basically not being on the level is just ridiculous.
When we're treated badly, any of us, we feel very humiliated and very angry. It's just human nature.
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vasue
Junior Member
Posts: 63
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Post by vasue on Apr 15, 2010 20:53:23 GMT -5
Sidney, tried to watch the video vimeo.com/5778497& instead got this message: "Sorry, "Morgellons" was deleted at 2:02:50 Thu Apr 15, 2010. We have no more information about it on our mainframe or elsewhere."
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Post by ruth on Apr 15, 2010 21:05:21 GMT -5
is blastomycosis the same or different than blastocystis hominis?
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Post by kmarie on Apr 15, 2010 21:34:36 GMT -5
is blastomycosis the same or different than blastocystis hominis? I was wondering the same thing and plan on looking it up!
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Post by Sidney on Apr 15, 2010 21:44:36 GMT -5
Sidney, tried to watch the video vimeo.com/5778497& instead got this message: "Sorry, "Morgellons" was deleted at 2:02:50 Thu Apr 15, 2010. We have no more information about it on our mainframe or elsewhere." This is getting really strange. That video wasn't working at 1:09 p.m. CST today. A friend in the Bay area tried to watch it and the email saying it didn't work came to my inbox at 1:09. Sorry about that. Thank you, Vasue.
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Post by kmarie on Apr 15, 2010 21:50:39 GMT -5
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Post by Sidney on Apr 15, 2010 21:54:54 GMT -5
Tons of stuff on the internet which makes me wonder why ANY doctor alluded ignorance of treatment options. Here's just a little bit about Blastomycosis and human skin. tinyurl.com/2d8zbdSkin lesion of blastomycosis MedlinePlus Topics Fungal Infections Skin Infections Images Fungus Read More Blastomycosis A skin lesion of blastomycosis is a symptom of an infection with the fungus Blastomyces dermatitidis. The skin becomes infected as the fungus spreads throughout the body. Causes Blastomycosis is a rare fungal infection. It is most common in the central and southeastern United States, and in Canada, India, Israel, Saudi Arabia, and Africa. A person gets infected by inhaling fungal particles that are found in moist soil, particularly where there is rotting vegetation. People with immune system disorders are at highest risk for this infection. The fungus enters the body through the lungs, infecting them. The fungus then spreads (disseminates) to other areas of the body. The infection may affect the skin, bones and joints, genitourinary tract, and other systems. Skin symptoms occur in about 80% of people infected with blastomycosis. It is a sign of widespread (disseminated) infection. Skin lesions may look like warts or like ulcers. They may also affect the nose and mouth. Symptoms Papules, pustules, or nodules May appear wartlike May vary from gray to violet in color Pustules that ulcerate May bleed easily May occur in the nose or mouth Subcutaneous (beneath the skin) nodules With time, these lesions can lead to scarring and loss of skin color (pigment). The lesions are most frequently found on exposed body areas. Exams and Tests The infection is diagnosed by identifying the fungus in a culture taken from a skin lesion. This usually requires a skin biopsy. I haven't experienced the "warty" looking lesions, but I certainly have heard from many others who experienced the warty looking lesions including having them on their feet as well as their face. When anyone describes "warty" lesions I think of the Cauliflower look. I had a wart on a finger probably 25 years ago and it had that Cauliflower appearance with tiny black seeds in it. Eveery evening as I watched television I gently rubbed it and told myself that daily it was becoming smaller and it would soon be totally gone. Sure enough I swear it worked. The wart disappeared and never returned. Since my smile crease lesion is long, wide, and very painfully swollen, it is obviously infected. It's contained white to opaque pus and yellow pus, but the infection is very deep. I just wish I could have it surgically incised and get the damn stuff out of it. As long as there's hair, fibers black specks, etc., within it then it will never heal, so there's absolutely no point in taking antibiotics. Much of the debris is buried deep under sebaceous glands which makes it even more painful.
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Post by jj on Apr 15, 2010 22:08:51 GMT -5
Re: 3rd Morgellons Conference in Austin--Great!!Jill, I have followed the links and remember this conversation here and a request for participants for a blastocystis study. That is clear to me. Your statements regarding Dr. Smith and his diagnosis and what your focus regarding that was confusing to say the least. I was also aware of a similar one made on MDR that was cleaned up quite a bit. You chose to bring what was originally posted there back here to LB that I am a moderator of as well as being affiliated with Foundations you question. Dr. Smith and I have had differences but I am capable of having respect for the man as a human being I care for as well as those wondering if they suffer from something similar. Things aren’t always as they appear or 'seem' to you. Why not personally ask Dr. Smith these questions that cause you so much concern? As far as I understand DR. Smith’s personal health, diagnosis, and treatment is/was just that …… personal. I am unaware that his diagnosis, treatment or care was part of a public study, but I don’t believe that it was. If it was a public study there would be certain procedures and guidelines to follow and his name would not be attached to any of it nor would it be made public unless HE HIMSELF chose to do so (anyone more knowledgeable and affiliated please do correct me if need be). I will Not be involved in disinformation no matter HOW IMPORTANT the cause. So ...... Jill, what you expect or feel entitled to morally or otherwise may not be the case at all. I certainly am under NO OBLIGATIONS to report to you what happens regarding my health or personal testing I do even if I assume it may be Morgellons related. The decision to me would not be a morally taxing one either. What I would personally do shouldn't be anything anyone would have to "wonder" about. IF I was part of a study that would benefit everyone I most certainly would PUSH to publish it or make the study public if there was one. Sadly, even with affiliations I am not part of such a study. Assuming that I was would be a mistake, assuming that Dr. Smith was is a mistake. Insinuating that anyone is entitled to individuals private medical information because you believe it should be public knowledge because they are part of an organization (and they are morally obligated) is a mistake. Indicating others would of benefited from their personal medical issues, testing, treatment (the way it has been done here) is wrong IMHO. Addressing Morals the way you have done here with the degree of entitlement you articulate (in a realm you don't have the expertise to critique or understand fully) is just wrong. Insinuating responsibility for cancer & deaths was/is wrong. Insinuating responsibility for blastocystis the way you have here is wrong. Critique away all you want, but have the expertise, knowledge and facts to back it all up. Conclusions based on "wonders" that appear to fit, then used to discredit Organizations devoted to helping IS WRONG. That's free speech I guess ______________________________________________________________________________ I understand the frustration involved with the lack of information regarding research everyone believes will benefit them. Truly I am just as sorry and upset as you all are. Ask questions for heavens sake but please don’t attempt to discredit others with unfounded hearsay and speculation. Nothing causes more frustration than attempts to discredit Dr's, Scientists and Advocates without facts to back anything up. Why do it anyway? Please forgive my tone and frustration. JJ
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Post by Jill on Apr 16, 2010 0:24:57 GMT -5
JJ
I am, as you say, expressing my concern. No one seems to know how to reach Dr Smith- or Robert Smith. I have tried and asked numerous people that were in touch with them so that approach can not work.
You seem to have positioned the quotes from Nick the builder and from my post to looks as though they are from the same person.
I would appreciate you removing my post- in quotes.
Thank you-
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Post by jj on Apr 16, 2010 8:45:54 GMT -5
JJ I am, as you say, expressing my concern. No one seems to know how to reach Dr Smith- or Robert Smith. I have tried and asked numerous people that were in touch with them so that approach can not work. You seem to have positioned the quotes from Nick the builder and from my post to looks as though they are from the same person. I would appreciate you removing my post- in quotes. Thank you- You do have a way of expressing your concern Jill. Your responce ended up within the wrong quote block when I was unable to copy said post in it's entirety without parts missing . I had to try to duplicate it myself in an effort to keep all intact. I failed and your words ended up in nicks quote block. Nothing intentional about it. I'll try to fix it because it is a mess. JJ
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Post by ppy18 on Apr 16, 2010 12:31:41 GMT -5
as far as greg smith being diagnosed with blastomycosis i believe i'm the one who posted that on a previous thread. gregs wife judy called me and gave me this info a couple of years back when greg was very ill and in the hospital. i believe they did a biopsy and the result was the blasto diagnosis along with some issues with his esophagus. again this was a few years back but i am pretty sure that this was not supposed to be confidential information. if i'm mistaken i deeply apologize to both greg and judy for betraying their confidence but i don't believe this to be the case. greg smith is a wonderful man who is very caring and compassionate. i'm so happy to hear that he has regained his health.
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Post by friskers on Apr 16, 2010 13:03:34 GMT -5
Thanks Kelly . Can this be a lesson for ALL of us to withold judgment on people and orginizations before we know the whole truth? And Even when we think we know the truth it is often just our perception. Ive had to learn this lesson myself more than once .Things are often not what they appear to be .
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Post by ppy18 on Apr 16, 2010 13:52:33 GMT -5
i don't know that citovsky has ever made it clear to anyone at the NMO that he wished to be removed from their website. i'm sure if this were the case they would willingly comply. maybe that might be the best route for citovsky if he is so bothered by the situation. seems like the professional way to handle it doesn't it
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Post by Jill on Apr 16, 2010 15:55:47 GMT -5
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