josej
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Post by josej on Aug 2, 2007 9:38:19 GMT -5
Toni, yea there sure is a lot of similarity. But like Carrie says, I wonder what "size" are those pictures of the bacilli? Here's another link, to one of your favorite little monsters bacillus thuringiensis, that also has lots of similarity to our chains. www.magma.ca/~scimat/B_thurin.htm
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Post by josej on Aug 2, 2007 10:17:00 GMT -5
Liz, developing an off-camera relationship with your reporter is excellent thinking. You're on it. One thing I can tell is you won't be running out of words to say (j/k hahahaha).
Also totally agree with you about getting records. We do that with every single doctor... every single appointment... like clockwork. Not only that, but we're now going to go back to some of the idiot-doctors who wrote offensive opinions (like dop and anxiety disorders) and demand that they change those records. If, for example, you went to a derm who diagnosed you as mental, he had no right to do so since psychiatry is not his field of expertise or practice. He can only diagnose you with a dermatological issue, period. Anything else is out-of-bounds and needs to be retracted.
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Post by josej on Aug 2, 2007 8:50:37 GMT -5
Liz..Lizard..Joy,
About the interview. KJ and I have been in front of the camera twice already. Here is my recommendation to you: BE YOURSELF. You're a wonderful human being who just happens to have a horrid disease. Speak the truth. Speak on what you know. Speak on you own experiences. You'll do just fine.
Reporters and journalists will want to know the facts. But there is always a question that they save for the end which may catch you unprepared. Well, not unprepared, but you may "blank out" with the answer because you'll want to say so much that you may not know where to begin. So, maybe you want to rehearse this answer in your mind. If you do that, you'll not only do fine... you'll do yourself a great service by expressing this.
They'll ask you this question after you've talked about your disease for a while. "How does this make you feel?" Reporters don't only want facts, they also want you to express your feelings because that really personalizes the story and helps the viewers to relate at a human level. So arm yourself with a few words that describes your feelings with emotion. Whichever way "this" has made you feel: angry... humiliated... perplexed... devastated... upset with your doctors... mad at the CDC... those are the kind of answers they'll want and which they'll put on the air.
So, search your soul and be ready to insert that answer in your interview. Remember that they will edit everything to just less than 10 second sound-bites. Less is more. So, make every word count.
And relax. You've already spoken those words a million times before! You'll do fine. And thank you for making yourself available to the news media. We really appreciate your willingness to do it. You're a great example for all of us.
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Post by josej on Aug 2, 2007 9:14:59 GMT -5
Hmmmm... what works? Isn't that THE QUESTION !! For us (especially KJ) her lesions get worse when the weather gets hotter and more humid. We live in South Florida which is basically a sub-tropical swamp so summers are the worst. Actually we only have two seasons here. Summer and Not-Summer. It only cools off from December thru' March. The rest of the year is hot. This may sound good to you northern Yankees, but it's gross if you have morgie skin. The one thing that consistently helps is ivermectin, which we faithfully take as per Dr Toni's orders. But, it's not the final cure. We're all waiting on that one, aren't we?
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Post by josej on Jul 31, 2007 19:23:02 GMT -5
A little off-topic (here I'm hijacking my own post)... but does anyone have one of those slides that's got some kind of built-in measuring ruler? Like millimeters or microns.. some kind of a graduated scale so you can put a bug up next to it and take a photo showing the exact size.
If you do, let me know where I can purchase one. Everytime I send a picture off to our local experts (not LB's experts but like Univ of Fla Entomology School, Purdue Univ, etc.) they always ask for a measurement. Thanks again.
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Post by josej on Jul 31, 2007 14:16:52 GMT -5
Calling all junior entomologists! Geez sorry that I'm always posting pictures of unknown bugs... but I need your help again. What is this little (1mm) bug? Mite? Louse? Other...? Came out of KJ's skin. Thx.
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Post by josej on Jul 28, 2007 13:40:51 GMT -5
I absolutely hate reading this thread. It's a heated topic of conversation around our house. For months... going on years... my wife's been pointing out to me that there's wholesale contamination in a lot of products we bring home. Well, no, this contamination seems to be in just about everything. Toilet paper: For a long time we've been finding small bits of rolled up T.P. on the floor. Just tiny little things. We believe that these are cocoons which the bugs roll up. Are these bugs so cunning? Or are they just opportunistic... and use whatever means are available to reproduce? We also constantly find brownish and blackish smears on the toilet paper rolls as well as on the paper itself. We've found moths and bug parts, like legs, in the rolls. So, now we have another habit, which is to spray the inner cardboard core of the rolls with bug spray. And yes, we also find a ton of lint that comes off the toilet paper. Was it always this way? I don't think so. I recently bought a pack of Charmin toilet paper. There was a fly (alive and flying around) inside the unopened plastic container. I took a short movie of it just to document it. So, basically every time we use toilet paper we run the risk of sticking something contaminated up our wazoos? Paper towels: Same thing. We just threw in the garbage several rolls of paper towels which were just dotted with tiny black specs. Each roll had this junk on it. We can't take any more chances to make things worse, so we just tossed it out. It's crazy, but at the grocery store I spend half the shopping time just inspecting these products before I dare bring them home. The only paper towel that we find that's consistently "safe" is the Viva rolls by Kleenex. They seem to be pure white and we've never found any bugs in them. Prescription Drugs: Bingo! Same idiotic thing. We ordered a 3-month supply of Corgard which KJ takes for her heart. The pills are supposed to be a sky-blue color throughout. Well, we received a batch that had all kinds of discolorations in every pill. They didn't look right. I wrote to our supplier about this, but was just ignored. We have found the same problem with many of our medications. But, I haven't put the cotton material under the microscope yet. (Do I really want to see any more?) Everywhere: OK, tell me if you find this to be true. Everywhere we go we find a gross amount of black specks, little bug parts, and things that don't look good. I mean in places like "The Container Store" which is a kinda upscale store that sells mostly plastic containers. I remember one evening KJ and I went through several dozen containers, and each one had bug parts inside them. Same with products made out of felt. They all have buggy things stuck on them. Wooden boxes? Full of contaminated things inside. Of course, everything comes from China, so why should I be shocked? We know that China is totally contaminated with parasites and infectious pathogens. I'll bet that every stich of clothing you're wearing right now, down to your underwear, was made in China. So, yes, I totally agree with Kmarie and others who find this in their everyday products. I said it was a heated topic of conversation at our home. That's because me, being of the male gender, it takes me a lot longer than my sweet KJ to accept this horrid reality. It's already been posted elsewhere that we men find these assaults on our reason very difficult to swallow. So, yea it has caused some sparks now and then. It's something I'm working on.
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Post by josej on Jul 26, 2007 10:54:03 GMT -5
Toni, Yea, one of those links you posted says fungal gnats "aren't harmful to plants or people, although it may be considered a nuisance. " hahaha...very funny (not). A nuisance ?? GRRRR ! A nuisance is dog barking at 2 in the morning, or running out of toilet paper, or getting a paper cut. Obviously that writer doesn't know anything about flies coming out of their body... or springtails... or nymphs.... or worms... thrips.... fibers.... etc. But yes, it measures approx 1/8" if that.
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Post by josej on Jul 26, 2007 6:53:58 GMT -5
Photo of a phorid fly -or- fungus gnat that came out of KJ's skin yesterday. For a while she's been feeling a lump underneath her skin by some of her lesions. She'd picked at it a few times before. The lump was not round, more in the shape of a 1-inch small rod. After she'd poked at it for a few days, the lump actually travelled a little further down the skin. Yesterday she took a sharp needle and started opening it up. She removed some skin tissue... some a little bloody... some stuff was darker brown... some stuff was nearly black. She put it all on a microscope slide. This fly was among the tissue. It was tiny but came out intact. Small wings, gangly legs, and hairs protruding from its head. She's really exhausted of being assaulted by these and other insects. Finding these bugs all the time really takes a toll on one's emotions. How can we get rid of these things?
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Post by josej on Sept 6, 2007 21:29:20 GMT -5
Kelly, I like your book idea. Another idea we've been rolling around is to write a very short pamphlet. Something that can be printed on a letter-size paper (both sides) and with a three-fold. Anyway, what we wanted to do was put together a pamphlet that is eye-catchy, shocking, attention-getting, and informational about Morgellons/Infestation. Our plan would be to stand in front of a large store and pass them out to people as the go shopping. I guess we'd do that until they chased us off. Then we simply move to another location. Can you imagine a typical "soccer mom" reading this and going home screaming to check on her little Johnny and Suzie? The idea is to let the general public know about this. I know 99.9% of Americans have never heard of Morgellons or anything like that. At least we'd get the word out... educate people.. maybe scare them a little (nothing wrong with that because this is darn scary). But the pamphlet has to be put together with the highest professional ethics, and of course, has to be very artistic too. So, that's what we want to do. Just wanted to share our thoughts with the LB community. And if anyone has already put something like this together, maybe they could share with us.
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Post by josej on Jul 28, 2007 23:22:06 GMT -5
What are floaters? They're matza balls that don't sink to the bottom of the soup. ;D OK seriously: Floaters are those "annoying" little spots that a lot of people see in their field of vision. They look like specks or shadowy shapes that usually move from side to side. Sometimes they even look like a little bug flying around everywhere you look. That's because the floaters are inside your eyes and they move with your eyes when you try to see them. Here's an example of what floaters can look like viewed against a blue sky. What causes them? Sometimes (as we get older) the vitreous gel inside the eye degenerates and forms bits of debris. This debris may be seen as dots, streaks, spider webs, etc. These objects appear to be in front of the eye, but they are really floating in the vitreous fluid. In a severe case, the vitreous gel may tug on the retina wall and actually cause a piece to pull away, causing a small detachment. As the retina detaches it may also sever a small blood vessel, causing a slight bleeding in the eye. Or... maybe it's another part of our having Morgellons. Eye parasites? Hmmm?
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Post by josej on Jul 28, 2007 19:02:47 GMT -5
Bugsy, glad you went and checked your eyes out. Hmmm... KJ's floaters (and partially detached retina) was also on her right eye. After it was lasered she still felt quite a bit of pain for the next two weeks. Then she went back for follow-up and the eye doc said the laser therapy was 100% and no more detachments, etc. However, today... it's now about three weeks later... the floaters are still there. They have lessened somewhat, but not altogether. Periodically one of the larger ones will break off and divide into 2 or 3 smaller ones. The eye pain comes and goes. He also gave her the steroidal eye drops. Not sure if they have helped or not. Of course, both of her eye docs say there are no bugs or parasites in there. That's what the shapes look like to her... looking from the inside out... but the pain continues.
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Post by josej on Jul 22, 2007 10:31:58 GMT -5
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Post by josej on Jul 21, 2007 19:52:45 GMT -5
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Post by josej on Jul 19, 2007 20:45:01 GMT -5
To whoever may be concerned about allowing ABC to use their photos or videos..... relax. I just read thru' the licensing agreement posted on the ABC site. Basically, it says that you (the Lincensor) are of legal age and that the footage (whether it be photo or video) that you're submitting is also "legal"... meaning you didn't steal it from someone else, etc. And you give ABC (the Lincensee) permission to use it as they see fit. There's absolutely nothing in the wording that says you're giving up ownership, nor that you can never use it privately in the future. So, don't worry. This is a non-issue. For those of you who can read legalease, I've copied and pasted it below. Please kindly advise if I misread it.
American Broadcasting Companies, Inc. LICENSE AGREEMENT
1. Licensor hereby grants to Licensee a non-exclusive license to use in the manner and for the purpose described herein, still pictures and digital video files and such other materials as may be submitted by Licensor hereunder (collectively, “the Footage”). Licensor hereby grants to Licensee the right to include the Footage (as provided by Licensor and/or as edited by Licensee) as well as the name of the Licensor (and copyright owner, if different than Licensor) in all programming and on the websites produced by ABC News, including updates, repeats, re-airs and in context promotions, and in promos released to non-ABC News programs and programs produced by ABC NewsOne for Licensee’s affiliates, partners, and licensees, as those programs are distributed worldwide, in all media now known and hereafter conceived or created, including home video and DVD and Internet and broadband distribution. Licensee acknowledges that it will receive no compensation for granting the rights herein, and that consideration for this agreement shall be the showing of the video in ABC News programming should the material be chosen for use.
2. In connection with the Footage, Licensor warrants and represents for the benefit of Licensee that:
a. He or she is 18 years of age or older, and has the right to enter into and perform this Agreement and grant Licensee all the rights granted herein in that it either owns the Footage or has a license to control the exhibition and distribution rights thereto; and
b. there are no agreements, nor shall Licensor enter into any agreements, which would prevent the fulfillment of this Agreement or impair or conflict with the rights granted hereunder; and
c. neither the Footage, nor the production or use of the Footage or any element of the Footage hereunder, will infringe on any trademark, copyright or trade name of, violate any right of privacy or any other right of another person, firm, corporation or other entity; and
d. nothing illegal was done to acquire the Footage and there are currently no disputes or lawsuits concerning ownership of the Footage; and
e. the events in the Footage that purport to be factual have not been staged or altered and/or the Footage depicts the events and persons as described to Licensee by Licensor.
3. Licensor agrees at all times to indemnify, defend and hold harmless Licensee, its related subsidiary and parent companies, and affiliates, and their respective officers, directors, employees and agents, from any and all claims, damages, liabilities, costs, and expenses, including reasonable legal fees, caused by or arising from: (i) any misrepresentation concerning the Footage or elements thereof by the Licensor; and/or (ii) any distribution or other authorized use of the Footage or elements thereof by the Licensee; and/or (iii) the breach of any warranty or representation made by Licensor hereunder, including but not limited to any claim relating to rights in the Footage (i.e. claims of copyright, unfair competition, breach of contract, fraud, misappropriation, invasion of privacy, and right of publicity).
4. Nothing contained in this Agreement shall be deemed to obligate Licensee to broadcast or use the Footage.
5. This Agreement and all collaterally related issues shall be governed by New York law. Federal and state courts situated in New York, New York (i.e., Manhattan) shall have sole jurisdiction and venue to resolve disputes hereunder and the parties hereto irrevocably submit to such jurisdiction and venue (and waive any claim that such forum is inconvenient). This Agreement contains the entire agreement of the parties, supersedes all prior agreements on this subject matter and cannot be modified orally.
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Post by josej on Jul 19, 2007 17:18:01 GMT -5
Thanks tonisue. Already got paper and pencil (well not really that's kinda archaic) got mouse clicking and .jpg's going!
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FAITH
Jul 16, 2007 10:37:12 GMT -5
Post by josej on Jul 16, 2007 10:37:12 GMT -5
Jess,
I'm not going to give you any lame advice, because truth is what you're experiencing is exactly what this disease does to you. It robs your soul... your dreams... your hopes... and it makes you ask yourself a lot of really difficult questions about life.
My wife sometimes feels like, "if this is how I'm going to be for the rest of my life, I don't really want to live". That's not her mantra. That's just a bit of reality.
So, before I depress you any further. hahahaha.... I just want to remind you that this disease hits you in cycles. It's especially hard on your mind and your emotions. It makes you want to throw-in-the-towel. Don't. THIS TOO SHALL PASS. You're having a really rough time right now. And I'm sorry. I don't know you, but I can sympathize with you because this happens in my home as well. But I guarantee that these bad times will fade away. Good feelings will return. You probably don't believe it right now, but they will. I've seen my wife come back from the very brink of the abyss.
And, may I also remind you of what you already know? What's the title of your post?
I'm saying a prayer for your Jess.
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Post by josej on Jul 15, 2007 12:11:54 GMT -5
Interesting article in today's THE MIAMI HERALD... but not a single mention of Morgellons. (?)DISEASE PREVENTIONVeterinarians' help is urgedThe CDC said veterinarians should work more closely with doctors to help bring contagious diseases under control. By JESSICA BERNSTEIN-WAX McClatchy News Service WASHINGTON -- The nation's top public health official on Saturday urged veterinarians to work more closely with human health researchers to curb contagious diseases. ''Thirteen out of the last 14 new infectious diseases that have affected people have arisen from animals,'' said Dr. Julie Gerberding, director of the Atlanta-based federal Centers for Disease Control and Prevention. ''We need a health system that can do fast science, fast detection . . . fast and effective communication, and a very, very important piece of this fast system is the alert veterinarian,'' she told the American Veterinary Medical Association's annual convention here. Because animals share our food and water supply and have greater contact with the elements, their sicknesses can provide an early alert to environmental problems, human disease -- and even bioterrorist attacks. Veterinarians and public health doctors know that, but they're just beginning to work together, Gerberding said. ''Between West Nile virus and influenza [bird flu], the veterinarians and the human epidemiologists have been much more connected,'' she said. Had specialists in animal and human disease collaborated right off the bat when West Nile first appeared in the United States during the summer of 1999, she added, the virus might have been identified faster. Instead, animal and human pathologists carried out separate investigations into a rash of sick people and birds infected by West Nile, which is transmitted by mosquitoes. In a more recent animal-human health interaction, pet food contaminants that killed a small number of animals moved rapidly into the human food chain. Although nobody died, the need for collaboration between vets and public health doctors was again clear and urgent. ''We're in a situation now where we're talking about health teams of physicians and veterinarians and nurses,'' said H. Leon Thacker, director of the Animal Disease Diagnostic Laboratory at Purdue University. ''If one of these foreign diseases gets into the country, the effect that it has is directly proportional to the amount of time it takes us to find it,'' he warned. www.miamiherald.com/509/story/171098.html
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Post by josej on Jul 11, 2007 14:54:19 GMT -5
Well.... my wife and I would be willing to do the 5 hour schlep from Miami to Orlando if that station wants to interview us. But, I do have a problem with that. If no one else responds... and me and KJ (Kathy) have our mugs on TV again... it's going to appear as if we are the only people in Florida with Morgellons. AHHHCCH!!!! Obviously that's a crock. So, where's everyone else on this board who lives in the Sunshiny State? Here's another problem: If nobody responds, the TV station is going to arrive at the logical conclusion that there are no Morgellons sufferers in Florida..... or that Morgellons people aren't really interested in telling their story. That's another crock. At least from a superficial reading of this board, I come away feeling that we all want our voices heard. Well, here's your chance. This could be your chance of a lifetime. And frankly, you're needed. We need you. My wife needs you. I need you. Please respond ok? If we're willing to do it (and trust me we're not media hogs) then will you consider it too? I kinda feel bad for toni who's busting her little tush writing letters and contacting reporters.... and for what (?) if nobody's interested? She's too classy to mention it. But I know she's feeling a little discouraged with all of this. I'm only a newby here, but y'all know how hard she works on our behalf. Let's support her efforts. Hey this was my first rant!!! Now I feel much better.
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Post by josej on Jul 8, 2007 14:08:40 GMT -5
I'm filing a disability claim for KJ due to her parasitic infestation and Morgellons disease. Kinda expecting to get denied (again). Has anyone had any success with disability benefits mentioning Morgellons and its disabling symptoms? If so, can you share any info that might help our case? Thanks mucho.
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