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Post by bessie on Feb 13, 2010 9:30:09 GMT -5
This is wonderful news, but it is not the first time that SSDI was granted on the basis of a Morgellons diagnosis and resultant disability
Doraisabel also won her case in May of 2009. Expert testimony was provided by Dr. Staninger and Dr. Spencer.
Bessie
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Post by bessie on Jan 22, 2010 14:39:33 GMT -5
The next meeting of the Tampa Support Group willl be SUNDAY FEBRUARY 7, 2010 at the usual time of 2:00 p.m. at the following location:
Office of Dr. Cheryl Reed 2605 W. Swann Ave., Suite 100 Tampa, FL 33609
Bessie
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Post by bessie on Jan 22, 2010 14:34:50 GMT -5
Sidney -
You may remember "God's Grace" posted extensively on Mycoplasma Fermentans, though honestly I can't remember what she said about it. I know a lot of it had to do with Plum Island and genetic manipulation.
Bessie
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Suicide
Jan 22, 2010 14:26:34 GMT -5
Post by bessie on Jan 22, 2010 14:26:34 GMT -5
Just rmembered Carol Arledge - symptom-free going on 4 years.
Bessie
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Suicide
Jan 22, 2010 14:25:36 GMT -5
Post by bessie on Jan 22, 2010 14:25:36 GMT -5
Just thought I'd mention - DoraIsabel has posted repeatedly that she is symptom-free after having M very seriously. Had lost all her hair along with all the skin issues. I saw "before" picture of her on that TV show last year on Univision (Aqui Y Ahora).
It happens.
Bessie
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"Words"
Jan 20, 2010 21:26:24 GMT -5
Post by bessie on Jan 20, 2010 21:26:24 GMT -5
Bannanny - Check her out on Wiki - Bessie
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"Words"
Jan 20, 2010 21:12:57 GMT -5
Post by bessie on Jan 20, 2010 21:12:57 GMT -5
Bannanny! That was beautiful! I looked her up - and Wikipedia wants your help! She sounds like an amazing woman, just like her sister. Love you, Bessie
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Suicide
Jan 10, 2010 20:55:31 GMT -5
Post by bessie on Jan 10, 2010 20:55:31 GMT -5
Greta -
Thank you for coming back now and then and sharing your success. You are not the only one. For whatever reason(s), there are many who have at least felt healed but seldom post. For newcomers who are frightened half out of their minds, hearing from someone who has recovered may be a life saver.
Bessie
ps - It's almost two years for me of near full remission. Just enough left to remind me that something is not quite right. For me, that may be as good as it gets, and I can live with that.
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Post by bessie on Jan 4, 2010 18:39:05 GMT -5
Cromwell -
Check your pm's.
Bessie
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Post by bessie on Dec 24, 2009 16:21:20 GMT -5
Yes - it is a 2 page article in a 16 page newsletter.
Bannanny - the whole newsletter has to be downloaded (16 pages) and it seems some computers aren't up to a download that size. I was contacted by others about that problem. I tried to copy and paste it, but it comes out with all the text on the left, about 5-6 inches. I'd have to copy & paste, and then go through it line by line. I may do that since others are having a problem with the DL, too. I'm doing OK, girlfriend! Thanks for asking - and I hope you are too.
Love, Bessie
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Post by bessie on Dec 21, 2009 13:24:32 GMT -5
The next meeting of the Tampa Support Group will be Sunday, January 3, 2010. It will be at the same location and time:
Sunday 1-3-10 at 2:00 p.m. Office of Dr. Cheryl Reed 2605 W. Swann Ave., Suite 100 Tampa, FL 33609
Bessie
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Post by bessie on Dec 21, 2009 12:38:45 GMT -5
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Post by bessie on Dec 18, 2009 15:24:02 GMT -5
Cindy Casey is looking for volunteers in the Dallas-FT Worth, TX area. Not sure what she is lining up, but here are her words:
Looking for Morgellon patients in the Dallas-Fort Worth area of Texas for public awareness opportunities Please if anyone lives in that area, please send me an EMAIL at ccaseyrn@hughes.net
Hope to hear from someone!
Cindy
Bessie
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Post by bessie on Dec 17, 2009 14:06:37 GMT -5
Bannanny -
You said you had your environment tested that: " Both Aspergillus and Chaetomium were found, along with others that aren't showing in my results." These are 2 of the three that showed up in your cultures.
Do you know if others have had their envirnonments checked as well? I would think that's pretty important to know. If it's in the house, then spores are inhaled and land on your body.
I use an ozonator, ionizer, and UVC light air purifier with a hepa filter. All four methods reduce mold spores. Dehumidiers are important in humid environments. Chlorine dioxide is supposed to be very effective in killing mold (the stuff in MMS), but you should not be in the house when the stuff is being applied. I can't remember how long you have to wait; I researched it some time ago when I was considering treating the house just in case there was mold. Living in humid FL, I am sure there is mold here, though I can't smell it and don't see it growing anywhere.
Bessie
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Post by bessie on Nov 26, 2009 21:28:19 GMT -5
That phone conversation probably took place a couple of weeks before the Nov. 4 announcement. It may well be that they thought that a statement would be ready "some time in Nov" but modified their thinking, hence the Nov. 4th stall...uh, announcement, I mean.
Bessie
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Post by bessie on Nov 26, 2009 21:21:08 GMT -5
The date may have come from this email that I received from one of the participants in the CDC/K-P study. It was sent to me on Oct. 24th. The writer gave me permission to make this public:
"Hi Bessie. The CDC, Doc Michele Pearson, has handed the research results from 'The Morgies' in California to an independent panel of Drs that will review everything over the next month. Then they intend to have a press release/conference to disclose the non-bias results. After that they intend to advise all Medical Facilities and Health Care Staff. This will be in the media and also on the CDC website. It is scheduled for November, but the exact date is not yet known. I spoke to Doc Pearson for info and she was very hush hush. She did the usual, "You are not alone, there are many many people in your shoes." This could finally be what we have all been waiting for. I am keeping my fingers crossed as I have only become more ill over these last few months and still my Kaiser Dr.s insist I am mental and my liver is my only physical illness. I asked my 1st mental Dr that did my evaluation last year, and had said I was clearly NOT mental, how many times she has had Kaiser over ride her and ask for a second opinion from an MD/PHD, due to the fact she only holds a PHD. And she said NEVER. In 23 years, NEVER. Guess I am the first for a lot of things when it comes to Kaiser. So I guess I will torture another Doc with my Questions about the CDC/Kaiser partnership and why no one acknowledges it or the undetermined infection they felt I should be the top lab rat for and how he or she as a mental doc intends to cure me based on that info. It works really well when I bring in the articles like te one I sent you and photos. They flip really quick and instantly feed info about other people tired of the 10 minute rush to diagnose at Kaiser. Well, it is all very exciting and positive. *Hope that you are well and fighting the good fight. Take Care-
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Post by bessie on Nov 26, 2009 20:57:43 GMT -5
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Post by bessie on Oct 26, 2009 14:26:26 GMT -5
This is an excerpt from an email I received a few days ago. It is from someone who participated in the CDC/K-P study. Some of the same info as above, but with a few extras:
"The CDC, Doc Michele Pearson, has handed the research results from 'The Morgies' in California to an independent panel of Drs that will review everything over the next month. Then they intend to have a press release/conference to disclose the non-bias results. After that they intend to advise all Medical Facilities and Health Care Staff. This will be in the media and also on the CDC website. It is scheduled for November, but the exact date is not yet known. I spoke to Doc Pearson for info and she was very hush hush. She did the usual, "You are not alone, there are many many people in your shoes."
The extras are that there will be a press release/conference, and that they will be notifying Medical Facilities and Health Care staff. If that is true, it does appear that SOMETHING more than the standard fare will be served.
I would feel better if they had neurologists instead of mental health, and if they had a pathologist as well on the panel. It tells a bit about their bias.
Beam me up. Bessie
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Post by bessie on Oct 20, 2009 8:04:58 GMT -5
Suebe and Frito -
If you can have this done locally and send me a copy of the DVD, I can include them in the send off to researchers. Of course, some variation in the quality of the samples will occur because of different practitioners, but I am not terribly concerned with that.
It is pretty easy to tell how "fresh" the sample is by how active the cells are. The issue of agglutination I don't think is terribly important, as that can happen in anyone's blood. I am more interested in whether anything else abnormal is found, and if there are any consistencies across the samples. Obviously, the more the better.
Two ways to find out if there is someone in your area doing this work is to google "live blood analysis" and your city. You can also call the health food stores in your area, as some of them have practioners come in once in awhile.
Please PM me if you are interested in participating in this, even if you cannot afford it as arrangements can be made to pay for it.
Obviously, this falls very short of a "scientific study" per se. At best, it is a screening of sorts. If anything surfaces as an indicator, then perhaps the real researchers can pick up the ball.
Bessie
PS - Please be sure when you look for someone to do this that they actually provide a dvd.
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Post by bessie on Oct 20, 2009 7:50:25 GMT -5
I guess I should make something clear . I really don't care very much what the practioner has to say about the live blood. What I REALLY want is the DVDs so there is a visual record of these samples. I will be getting a master of the individual analyses on one DVD and will make copies. I intend to send them to various researchers for their opinions. In terms of the practioner's skill in preparing the slide, she is very good. I had two of them done with her and the samples were very active. In her interpretations, she knew to stay away from the edges where agglutination began as a result of drying and not a "true" agglutination. She was very quick in transferring the drop to the slide.
Bessie
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