josej
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Post by josej on Oct 9, 2007 22:30:35 GMT -5
Skytroll, Here's that section enlarged. I used Photoshop and just clicked the button called "one step photo fix"... and just let the program do its thing. I must admit it looks a little menacing now. Your thoughts?
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josej
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Post by josej on Oct 9, 2007 0:25:59 GMT -5
We sure could use some keen eyes helping us identify these specimens. These bugs came out in KJ's stool. (Pix were taken thru' scope at 250x) Thanks, and hope you're not tired of seeing our pictures. Very tiny bug... attached to some stool. Flat ribbon-like worm. Same exact specimens come out in her saliva and also in skin lesions. Some kind of skin left behind when bug exited. Notice all the tiny holes where bug-hairs are normally found.
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josej
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Post by josej on Oct 6, 2007 16:10:53 GMT -5
Here are 2 photos for your identication. What bug is this? Again, thanks. Tiny black bug attached to subcutaneous skin scraped from a lesion on her arm. Small bug leg with "suckers" on it.
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josej
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Post by josej on Oct 6, 2007 16:05:02 GMT -5
I know having "fibers" is nothing new on this board. Please look at these 3 photos of fibers KJ took from scraping the skin around her mouth... lips and corners of her mouth. We see fibers of several colors: red, white, bluish, even purple, but the black ones are thicker than the rest. I'd really appreciate your comments on this. (100x magnification) Thanks all. BTW, identical fibers also come out from skin lesions in her arms.
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josej
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Post by josej on Sept 6, 2007 21:10:54 GMT -5
Sid, It had to be heartbreaking to be the bearer of this kind of news. Kathy and I just read your post and felt like a knife thru' the heart. I'm so sorry for Cindy and wish there was something we could do for her. Chas death is a real loss to all of us. I am so sorry.
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josej
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Post by josej on Sept 4, 2007 20:22:44 GMT -5
Toni,
Under HIPAA rules you have uncontested rights to your records. The entire records.. including doctor's notes, any labs, your vitals, prescription records, diagnosis, etc., in short everything. This includes your doc's typed and hand-written notes. You don't need a third party to intervene.
Send him another request stating that you want a copy of each and every piece of paper in your files... even if they are blank forms. Don't let them intimidate you. Use the word HIPAA and state forcefully (you're good at that) for them to send your entire record this time. Let the doc's office know that you were very displeased with the first set of records which was incomplete.
It's possible that your records never got typed up and are still in the doc's handwriting. Maybe that's why they didn't send it. No matter... those are your records. They have the right to charge you a nominal fee for copying them, but they cannot deny you of these records.
By the way, if this UCLA doc was not a psych-doc and yet he made some "mental" diagnosis on you such as anxiety disorder, delusionary, etc., you can also request (no you must request) that any such statements be removed from your medical record, since those type of diagnosis are not within the scope of your doctor's field of expertise. This is important, because down the road, such comments can come back to haunt you.
PS This type of info was what KJ used to do at work... so she knows what she's talking about real well on this issue. Good luck and by all means, send that request ASAP.
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josej
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Post by josej on Aug 30, 2007 23:38:56 GMT -5
Lizard,
I'm applauding you.
I totally understand how this makes you feel. We too have been victims on each item on your list.
If you really do move forward with a legal case please keep us posted. It won't be an easy fight. You know that right? But, if you do it, just hang tough and let your LB supporters encourage you along the way.
Hat's off to you.
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josej
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Post by josej on Aug 20, 2007 13:53:38 GMT -5
Bugsy, You are so right on.
We too have been thoroughly disgusted with all kinds of bug pieces in the stuff from the store. We've recently found:
* Bug legs imbedded in paper towels. * A live fly inside an unopened case of Charmin TP. * Dozen ants inside plastic container of wipes. * Bug parts in manicotti shells. * Plus all sorts of filth in most paper goods... disgusting.
I don't remember it being so gross ever before. We're actually taking little movie clips and documenting it for future use. I agree with you... this is making us all sick. Who's responsible?
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Post by josej on Aug 18, 2007 20:37:53 GMT -5
BelikeH20: If so, then we can all do a class-action counter suit against Monstanto for assault with a deadly weapon... And if I have any of their property in our body, they're welcome to have it right back! Justhanginin: WHAT!!!! If it's white, don't eat it? No sugar either? Aw c'mon... you're kidding about the coffee right? You're a NewYorker... how d'ya survive without that stuff in the morning? OK seriously now. If this calls for extreme measures, so be it. We'd like to win this war... really. So if you have a healthy eating program (don't want to use the " d" word") that would get the fungus out of us, please send it. Gracias to all of you.
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josej
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Post by josej on Aug 18, 2007 11:29:48 GMT -5
Hey all, thanks so much for your responses. By the way, I hope it's not off-topic to posts these types of pictures on this board. We just get kinda overwhelmed with these symptoms (bugs) and frankly, where else but here can I try to get answers? So, thanks for putting us with our pictures. And answers! Wow, we sure need answers for this.
Cyn: KJ's nasal fly... well, that was then... but they seem to come out from various places. If you fix the nose, then they come out thru' the arm lesions. If you take care of that, then they come out in the stool, or in the scalp. I guess they move around and make their exit wherever it's convenient at that time. And no, she didn't go to any doctor about it. (Kinda pointless.)
Prevenge: No, KJ doesn't get much exercise right now. If you could only imagine how difficult it is for her just go make it to the bathroom. She has little energy and is very dragged down.
Liz: You're right. There's a lot of similarity with all her sores. Approx the same size, depth, and they behave the same way. It's like they have a life of their own. They start as a little dark red spot. In a few days they'll grow and become very itchy. Later there's a dark "something" deep inside. That's ususally where a bug of some type will be found.
Sid, BelikeH2O, Sisi, P.Ali, Browncircles, Roberta: Thanks for your ever-encouraging words.
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josej
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Post by josej on Aug 15, 2007 9:16:50 GMT -5
Bugsy, Thanks for your links. My comment about "unfriendly discussions" was about derm docs, entomologists, etc., who still hold on to the position that bugs can't inhabit humans. To them, the earth is still flat, I guess. But thank you for your excellent info. I appreciate it.
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josej
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Post by josej on Aug 15, 2007 7:19:22 GMT -5
Gertie, I appreciate your kind thoughts. And yea, it is scary and makes you feel like you're in a nightmare. But, every person on this board and thousand others are going thru' the same horrible thing. Shame on the powers-that-be for not offering real help!
This is why we keep making noise. We can't go away. KJ and I don't post these images just for the "fun" of it. We share our struggles this way for all to see... to keep our ground swell moving forward... and hopefully so that we can find a cure.
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josej
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Post by josej on Aug 14, 2007 22:50:24 GMT -5
Bugsy: Je ne parle pas francais, parlez-vous? Anyway.... that's a very hot button. From Jannsens to Altschuler to Amin. Very very hot discussions. Sometimes not friendly. Frankly, I don't care about all the politics. All I can tell you is that I've seen collembola coming out of my wife. From her skin, her scalp, and in her stool. Maybe it doesn't square-up with conventional wisdom among entomologists... but we have the evidence. I've got specimens in alcohol... I've got pictures... now video clips.
Prev: We don't have horsies in our backyard to get collembola from. (Kinda wish I had a pony, though.) And I feel sorry for Mr Hurd snorting springtails up his nose. Your logic is sound about insects like to eat fungi. But is that the only explanation that suits my wife's situation? ... just asking.
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josej
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Post by josej on Aug 14, 2007 21:23:26 GMT -5
Last night KJ's scalp was itching like mad. She couldn't stand it any longer. So she ran into the bathroom and scratched and shook her hair over the sink. A lot of debris fell out. Among the stuff there was one little bug... and it was moving... so she picked it out of the sink and put it on a glass slide with a small drop of water (so it couldn't esacape). I took it over to the microscope and took several movies of it. I selected small sections of the movies and made a little clip. (The quality is poor because of the compression.) Click on the link to open the video clip. img531.imageshack.us/my.php?image=springtailmovie081307mw8.flvAnd some people still say that springtails can't live inside a human !!!
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josej
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Post by josej on Aug 8, 2007 11:27:50 GMT -5
KJ and I had a long consultation with the doc at the hyperbaric facility. He was excited and thought that this therapy could actually kill off the pathogens in our body. But he had lots of questions about the disease. Was very concerned about exposing his staff and other patients. Initially he told us we could bring our own bed sheets to use in the chamber. Then we'd take them home, wash them, and bring them back the for the next treatment. He also warned us to use a lot of discretion and not to discuss our disease with other patients or with their relatives in the waiting room. Well, this morning he called to let us know that they won't be treating us because they're afraid that we'll spread the disease to their staff... and to their other patients. So, until they can devise a chamber in a separate - quarantined - room, then we cannot receive treatment. This got me thinking that the bottom line (and we should all get used to this) is that you're likely not to be treated for Morgellons. Why don't they treat us? - At first they won't treat you because you're deemed "delusional".
- Then when they start to believe you, they won't treat you because they don't know how.
- Then after they wholly believe the disease is real, they won't treat you for fear of contamination.
Doesn't that just about cover it? If my logic is wrong, please tell me because I'm pretty mad / upset / frustrated / and defeated about all this.
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Post by josej on Aug 7, 2007 8:13:43 GMT -5
There seems to be a connection with C. pneumonia.
To date the approach towards Morgellons has been much like Lyme. But there's a docs working on this who thinks that C. pneumonia is the underlying infectious agent causing many of our immuno-deficiencies.
The impaired immunity then allows a variety of infectious agents to cause problems. It also enables the reactivation of a number of other viral agents, especially the herpes groups.
It seems reactivation of herpes viruses may be a big player in causing some symptoms especially fatigue and pain. And so the logic is that the pain in many patients with chronic Lyme, Morgellons, Fibromyalgia, etc., is that the Varicella/Zoster virus is the culprit. Instead of causing only a single dermatome to become inflamed, there is generalized inflammation up and down the spinal column causing more generalized neuropathic pain.
So, the thought is, treat C. pneumonia, and a bunch of these other symptoms ought to go away.
The treatment is generally antibiotics and antifungals.
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Post by josej on Aug 4, 2007 15:32:28 GMT -5
(This is from KJ... I'm only doing the typing)
I know that everything started in my head. Flies started coming out from the top of my scalp. The sores started appearing on my head and coming down behind my ears, neck, and shoulders.
I had fairly long hair, but I cut a lot of it off, put it in a short ponytail and shaved about three inches up the back of my head. It was funny, Jose said that it wasn't very even (looked like the WW's on Charlie Brown's shirt) anyway he kinda fixed it. Once I did that and put my concoction on the sores, it stopped itching and the critters went away from there. (Sorry I'm being tangential)
Back to the lumps: I had a lump behind my ear and a very swollen gland on the side of my neck by my clavicle. My doctor ordered a cat scan. They found several lumps and "spiculated nodules" in my lungs. The doc didn't believe anything about the bugs and when my husband showed him the pictures I'd taken thru' the microscope he accused Jose of creating them on PhotoShop or some software program... that they weren't real... it made me so mad! A pet scan showed it wasn't cancer. So I gave these results to different doc, who recommended that I have another follow-up cat scan to see about the nodules.
The lump on the back of my neck is now gone.
One problem that bothers me (besides the bugs) is that I've been having small seizures and I am constantly tired. Sometimes I have to sleep the whole day. Dr Smith said that this was normal with people with our disease. But I had about five different parasites that came out the other night, and I'll admit that it really freaked me out. One came out alive from a lump on my skin that had become swollen. I agree with you that these lumps do move and leave tracks behind.
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josej
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Post by josej on Aug 5, 2007 9:25:26 GMT -5
If anyone is contemplating filing for disability insurance, I'd be glad to share with you the documentation we used. Just PM me about that.
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josej
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Post by josej on Aug 3, 2007 12:00:01 GMT -5
More than a year ago, KJ applied for disability benefits thru' Met life after she could no longer work due to Morgellons. They issued her a check for one day's pay (?!) and denied the claim. They said she didn't have sufficient medical data in support of the claim.
Bummer! How do you prove the "unexplained" to an insurance company?
Well, just last month we resubmitted the claim. This time we figured we'd overwhelm Met Life with every piece of paper we could think of. We downloaded and printed out portions of several Morgellons websites. We sent them the CDC page. We sent copies of letters from Sen. Clinton, Schumer, and Feinstein. We sent copy of Dr Bransfield's article in Psychiatric News. We sent them photos of KJ's bugs. All told, it was a package of 43 pages.
This time we got a phone message on our answering machine saying they denied it because we hadn't resubmitted before their 120-day appeal time.
I called back and asked to speak with a higher level claims manager. I got thru' to a real nice lady who at first gave me the same standard response that we didn't appeal it in time. I argued that my wife was too disabled to fill out any more paperwork for disability... I told her that Met Life was penalizing her for being sick! That didn't make sense to us. Here KJ was applying for disability benefits, but they were denied because she was too disabled to fill out the paperwork.
The lady got it. She put me on hold and started reading thru' all the documentation. She came back on the phone and said she'd call us back. Much to my amazement, she called back and this time her tone was competely different... human.
Here's the good part: She said after reading all the Morgellons literature I sent her, she was horrified. She couldn't believe that KJ had been suffering with this for nearly two years without any real medical help. I told her that was true for KJ and also true for tens of thousands of others across all fifty states who have the same disease... and have been ridiculed and ignored by doctors, health departments, and the CDC.
She said she'd call back.
Two days later she called saying she approved the claim and was FedEx-ing a check for short-term-disability from the initial date KJ could no longer work. She said someone from their long-term-disability department would call.
This morning I got that phone call.
That lady had a million and one questions about Morgellons. She had already logged on to the MRF, OSU, LB, and various other sites. She said that the entire Met Life office (Utica NY) was all abuzz about this. No one had ever heard of Morgellons before. She's asking me to email her all the info that I have. She seemed sincerely terrified of this disease. (Oh, by the way, she also approved KJ's long-term-disability payments which could theoretically continue until the year 2016.)
I thanked her but did my best to leave her with the uneasiness that is an epidemic which will soon become a household word. She gave me her personal email and said the entire office wants to know more about Morgellons.
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