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Post by lilsissy on Jan 22, 2010 17:10:23 GMT -5
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Post by Sidney on Jan 22, 2010 20:45:32 GMT -5
I received this link from a friend today. Look at the two images at the top left. tinyurl.com/yzbhr6e
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Post by jeany on Jan 23, 2010 4:29:25 GMT -5
Jen, thanks for the info. I read the article and it does sound suspicious, esp. after looking at the pix Sidney posted. I was 'diagnosed' with ovarian cancer in 1996..hmm...Another thing: many people have reported to be 'bloated', me too btw.. Please give Karen my best wishes. Jeany
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Post by jeany on Jan 23, 2010 4:43:38 GMT -5
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Post by kammy on Jan 23, 2010 8:08:54 GMT -5
Hi Jen, looking at en.wikipedia.org/wiki/Pseudomyxoma_peritonei - I was wondering if Karen has had her appendix removed? Pseudomyxoma peritonei "Pseudomyxoma Peritonei is an uncommon tumor known for its production of mucus in the abdominal cavity. Unlike most cancers, this disease rarely spreads through the lymphatic system or through the bloodstream. Additionally recent (2003) publications linking the MUC2 enzyme overexpression to the cell reproduction has launched research efforts into additional drug treatments. In mid-2008, the NIH temporarily suspended clinical trials for this disease, however funds for clinical trials became available again in 2009.Recognizing that research into this disease is seriously underfunded, patients formed an IRS-designated 501(c)3 charity in late 2008 called PMP Research Foundation (PMPRF). PMPRF's focus is to fund promising research to improve treatment options and ultimately to find a cure for the disease. PMP Pals' Network In 1998, patients, and family caregivers in the US, UK and Holland united to share resources including regarding medical options, research, clinical trials, preparation and recuperation from/for surgery and/or chemotherapy, assistance with health insurance and disability claims, and assisting patients with obtaining transportation and family lodging near cancer centers. These patients, and family caregivers, found that their need for personal interaction was not being met via message boards, therefore they created the PMP Pals' Network providing opportunities for patients and families to communicate directly, meet personally, and communicate via email,telephone or via Skype. During the past decade the PMP Pals' Network of volunteers has expanded to include 45 countries and assists patients and their families in 12 languages."
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Post by kammy on Jan 23, 2010 8:20:02 GMT -5
From above: "Additionally recent (2003) publications linking the MUC2 enzyme overexpression to the cell reproduction has launched research efforts into additional drug treatments." "Entamoeba histolytica cysteine proteases cleave the MUC2 mucin in its C-terminal domain and dissolve the protective colonic mucus gel" www.pnas.org/content/103/24/9298.full"Only a minority of people infected with E.h. acquire an invasive form of the disease. One possibility for such variability could be single-nucleotide polymorphisms at this site of the MUC2 sequence. However, no SNPs were found at this site when searching SNP databases. Another possibility is that the two threonines at the cleavage site could be O-glycosylated. It is likely that glycosylation of one or both of the two threonines flanking the cleavage site will affect or perhaps block the E.h. cleavage. The human genome contains 20 peptidyl-GalNAc transferases that add GalNAc to serine or threonine. The specificities of some of these enzymes are known, but it is still not possible to predict whether any of these enzymes should glycosylate this sequence. In any case, it is known that the intestine has abundant peptidyl-GalNAc transferases and that the repertoire of these transferases can extensively modulate which glycosylation sites are used in a specific sequence. Further studies should reveal whether the two threonines at the α-cleavage site could be glycosylated and whether this glycosylation could modulate the invasiveness of E.h. Colonic mucus presents an obstacle for E.h. that must be disrupted before making contact with the epithelium, and E.h. has developed a unique strategy to overcome this barrier. In addition to degrading the mucin oligosaccharide component of the molecule (32), the parasite targets a specific cleavage site in a region of the molecule where a cleavage disrupts the mucus gel. Documentation of this event may aid in our understanding of how invading pathogens can defeat innate defenses and how the host can withstand the pathogen by its protective mucus layer. "
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Post by kammy on Jan 23, 2010 8:40:58 GMT -5
From the above abstract: "In order for the protozoan parasite Entamoeba histolytica (E.h.) to cause invasive intestinal and extraintestinal infection, which leads to significant morbidity and mortality, it must disrupt the protective mucus layer by a previously unknown mechanism." I looked at the example given of Entamoeba histolytica, it has visible 1 - 4 nuclei: What I found interesting was that Schistosomas are also shown in the image photos when you do a search on "Entamoeba histolytica", as has been brought to our attention by Barb who says that Karen has similar symptoms as hers?: We know that some sort of parasite is involved in Morgellons... it seems that a number of parasites could cause Pseudomyxoma peritonei to happen?
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Post by kammy on Jan 23, 2010 8:51:23 GMT -5
I wonder what these folks have to say - PMP Pals' Network of volunteers, maybe we need to check them out?: www.pmppals.org/Since we're not allowed to cut and paste their material - please read the page to see how my question pertains: **I've heard several reporting Bloating... not this that is the cause... but needs to be looked into. Jen - was Karen having signs of bloating?
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Post by toni on Jan 23, 2010 9:06:07 GMT -5
Lilsissy, great info, thank you.
Sid good link too, interesting for sure. I'm sure curious what all this is about.
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Post by kammy on Jan 23, 2010 9:13:19 GMT -5
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Post by kammy on Jan 23, 2010 9:20:36 GMT -5
SURGEONS & SPECIALISTS Listings www.pmppals.org/surgeons.htmThis page gives links to communicate directly with patients who have been treated by the long list of physicians... a link to articles and abstracts, America's best hospitals to treat this, how to get a second opinion, and a Surgeon and Pathology list with email addresses.
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Post by kammy on Jan 23, 2010 9:41:15 GMT -5
It mentions a rare form of adenocarcinoma called Signet ring cell adenocarcinoma... let's see what this looks like? Well... it looks like what we've been looking at, but - so many things do.
Has Karen been tested for the Signet Ring Cell form of this disease?
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Post by lilsissy on Jan 23, 2010 16:06:06 GMT -5
I don't know kammy , I'll ask her .
Jen
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Post by kammy on Jan 23, 2010 18:11:19 GMT -5
Hi, Jen, how's Karen doing? I asked 3 questions above about Karen
1. Did she have her appendix removed?
2. Does she have signs of bloating?
3. Was she tested for the signet ring cell?
and another one I just thought of:
4. Does she have large cell or small cell cancer?
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Post by ctbarb on Jan 23, 2010 23:03:47 GMT -5
Hi, I'm going to chime in here about the bloating questions. When I spoke with Karen, she does have bloating...and so do I and have had for more than 4 years now. When my "Sleeping Giant" awakens, and starts the dance of death in my abdomen, my stomach has literally expanded anywhere from 3-6" within a 30 minute time frame or less! When I eat anything...even drink water, it will do the same thing! I look like I'm ready to deliver! Once The "SG" releases its contents (usually right after eating or drinking) you can hear, feel it going through the digestive system - but in my case, it takes a shortcut - straight down and out! You can actually test yourself and find out how long it takes food to go through your digestive system - it's very simple really. Eat one maraschino red cherry...and wait for it on the other end! A doctor treating my son for allergies, told me about this over 40 years ago. Very interesting to see. Barb
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Post by chaosonline on Jan 24, 2010 3:40:06 GMT -5
Hi Guys,
Just to let you know the type of cancer I have been diagnosed with is:
Intraductal Papillary Mucinous Neoplasms (or tumors) and the type of cancer is adenocarcinoma. Recently the doc's refer to it simply as pancreatic cancer.
I have several tumors all in and on my pancreas, also throughout the pancreatic duct. I'm not sure I completely understand exactly but from what I have read these tumors are surrounded by a mucin filled cyst that occasionally spews mucin. The cancer cells are in the tumor and some were contained within the mucin.
Yes I did experience bloating and despite my surgery (late November) to both remove my gall bladder (it was collapsed) and place stints so I can eat, I still have some bloating problems.
My appendix was removed over 30 years ago.
Never heard of a signet ring cell test so I doubt I was ever tested for it.
I am hoping to find the time to do a complete medical history from the time I was bitten by the tick and realized I had morgellons. I have a outline of all of my symptoms from mid 2006 so It shouldn't be too hard to accomplish. Maybe it will help somehow.
Karen
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Post by bannanny on Jan 24, 2010 4:32:35 GMT -5
Not good to hear what you've told us Karen, but it is good just to hear from you. I wish I could do something... anything to help you. If I can help with getting your medical history together, at least I can do that. But knowing what you're going thru and knowing I can't make it go away makes my heart hurt so bad. I want answers for all of it... answers for everything that's been put on our plates. Answers for all this suffering and pain and for what you and others are going thru becuz of it. Answers for those who did all they could to get past it but never could. I'm becoming so very angered by it all, but it's the helplessness that's really gettin to me. Why have we been left all alone with this mess? I just don't understand why.
Are your doctors treating you well sweetie? I'm praying for God to light their way to the path that will bring you wellness. I won't stop either cuz I know He hears us. I know He doesn't want any of this to be happening... I'll continue to believe He will turn this around for you too. So stay strong and hold on... we're right by your side too and we won't let go of you girl.
I love you very much ~~ bannanny
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Post by lilsissy on Jan 24, 2010 5:16:59 GMT -5
Sidney, I almost feel out of my chair when i read your jellyfish , mucin article.. I has just been wondering (before I saw your reply) , if somehow we could have a very small spieces of jellyfish replicating in us , Jellyfish are immortal as cancer is immortal too.
hmmmmmm,
Jen
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Post by kammy on Jan 24, 2010 10:48:29 GMT -5
Karen, it's good to see you out, as you can see we've been very concerned about you. Yes, information sharing is so important right now so that we can stop a lot of guessing and start pinpointing what might be happening with some of us - if not with all of us, we just don't know at this point. To have some early indications or suspicions to look in this direction, to some us might be a difference in life and death, we never know, the information we share today could save us tomorrow.
I've often wondered about the 'jellyfish' aspect of our disease too, Jen. I know that it's involved somehow... of course, I can't prove it. I believe there is jellyfish DNA - at least, tied up into the mix... there were a lot of experiments around jellyfish and advances in drug therapies at one time.
I thought the PMP.org site above had some very useful information and especially the list of doctors that are familiar with this type of cancer... of course, we can't cut and paste their information due to their copyrights wishes, I hope you all checked it out?
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Post by kammy on Jan 24, 2010 11:19:53 GMT -5
I'm a curious cat, Karen, I can't help it... I was wondering last night about you and Glen - wondering if either of you had lesions that produced lots of specks/debris in your history of Morgellons?
I'm wondering if with some of us, like myself - the cells are never ending coming out of the skin or if others that don't report lesions, their cell proliferation is being internalized?
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