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Post by lilsissy on Dec 18, 2009 23:20:11 GMT -5
Karen was released last week from Henry Ford Wyandotte last week . The Doctor still felt she had cancer even though the pathology on her removed Gaul bladder said it was not. She was to be check back in to Henry Ford Hospital Main, Detroit for additional tests. She started having sever pains and went to University of Michigan because some of the research told us U. of M. may know what this is . The are on the cutting edge of Pancreas research in combination with Genetic Diseases. Karens pancreas is filled end to end with tumors and cysts . U. of M. diagnosed her with Introductal Papillary Mucinosis Neoplasm. They said this has been caused by a genetic disease as I suspected. They did not tell her which one but my research leads me to believe it is connection with the family's genetic history of symmetry disease. Left - right Symmetry. My daughter is Situ Inversus Complete and they found Karen to have abnormal organ placement as well . My mother also had one leg longer than the other. there is an abnormal production of mucin that goes along with the symmetry gene. Also the incomplete Cystic Fibrosis Gene may come into play . I am not sure which genetic condition U. of M. was referring to but I intend to find which specific condition they believe is involved with this. I have been waiting until I could put this together in a clear and concise way but right now I feel as though my brain is going on block . I seem to be forgetting so much. It has become more difficult to communicate lately so I am telling what I know to the best of my knowledge now in case I get worse . This happens to me when I stress also. I will update as more information becomes available. They scheduled her for complete removal of her pancreas on first of Jan. This type of neoplasm becomes cancerous 85-95% of the time. They may put her on chemo and radiation if the pathology of the pancreas comes back cancer. She is really having a terrible time. Her muscles are spasming and her pain is horrific. She also has difficulty remembering things when she is stressed but she is doing a good job informing me . She sends her love to everyone . She would like to donate her pancreas if possible to Morgellons research. B.T.W. I do not feel that Morgellons is only genetic but a combination of genetics and environmental causal factors. Jen I feel the picture shown here third row from the bottom , right hand side orange goo with hexs may have something to do with her condition That sample came from Karen, www.morgellonsexposed.com/Plaques.htmThe Doctors said it was a rare condition and they seem happy to have the chance to have her as a patient. Very strange that Scientists say the only thing stopping them from creating artificial silicone life is this symmetry gene. A little on symmetry , www.daviddarling.info/encyclopedia/S/siliconlife.html
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Post by Sidney on Dec 18, 2009 23:38:45 GMT -5
Dear Jen, WOW......What a lot of information you've shared and it is SO appreciated. We do miss Karen (Chaosonline) and please tell her she is loved, missed and that you assure us you will keep her Lymebusters Family updated. So sorry she is in such pain, but it does sound as though she's getting good medical diagnosis and care.
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Post by mfromcanada on Dec 19, 2009 0:05:02 GMT -5
I miss Karen/Chaoonline too. I really hope she gets better somehow someway.
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Post by lilsissy on Dec 19, 2009 0:32:43 GMT -5
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Post by cyn on Dec 19, 2009 6:24:48 GMT -5
Thank you Sissy for the informative update. I'm glad to see there is no mention of the heart in Karens diagnosis.
But had hoped they would mention a suspicious fiber mass.
Not sure why they cannot help her with the pain though. Hope she gets relief soon.
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Post by toni on Dec 19, 2009 9:13:17 GMT -5
Lilsissy, Thank you so much for keeping us updated on Karens condition. My heart goes out to you and Karen (sisters), and I'm so sorry she's going through all this. I know this is frightening for you too. Our prayers are with you both, and I am glad she's in good hands. Please send her our love and care, and you too Jen, take care and keep strong for you and your sis.
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Post by lilsissy on Dec 19, 2009 14:37:58 GMT -5
cyn,
I very much believe this is a suspicious fiber mass causing the cysts and tumors. Her thyroid was removed three years ago after a biopsy came back as cancerous , it was not cancer but abnormal fiber growth. Karen and I are filled with abnormal fiber growth , breast, uterine, lungs. See the above link I posted on mucin , it is involved in fiber growth in the body. A couple years ago the one Doctor thought I had Pulmonary Fibrosis. If you research that it is abnormal fiber growth caused by various reasons , one being Silica . They say sometimes unidentified fiber growth.
Yes this very much has to do with the assembly of fibers , maybe they to have a symmetry gene that dictates the way they assemble.
B.T.W. to look at us you would never know we have this gene , it is only obvious when seen from the inside by tests. Our family has won beauty awards , we are the famous Gilmore Girls of the neighborhood.
My mother did not know she had one leg longer than the other until she was paralyzed out of the blue at age 69 .
So if you have this gene you may not be able to tell . Karen herself did not know her Gaul Bladder was out of place . The symmetry affects the way the fiber assembles too, I am pretty sure.
Jen, I only mention this so you will understand. Our face symmetry is better than average but the organs are displaced. I have noticed the pictures on this board of the members, many are beautiful.
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Post by lilsissy on Dec 19, 2009 14:42:28 GMT -5
A little on Mucin, Mucus is a "slimy" material that coats many epithelial surfaces and is secreted into fluids such as saliva. It is composed chiefly of mucins and inorganic salts suspended in water.
Mucus adheres to many epithelial surfaces, where it serves as a diffusion barrier against contact with noxious substances (e.g. gastric acid, smoke) and as a lubricant to minimize shear stresses; such mucus coatings are particularly prominent on the epithelia of the respiratory, gastrointestinal and genital tracts. Mucus is also an abundant and important component of saliva, giving it virtually unparalleled lubricating properties (try sticking a piece of apple skin between your molars without saliva).
Mucus-secreting cells are widely distributed through the body. Goblet cells are abundant in the epithelium of the gastrointestinal and respiratory tracts, mucous glands in these same organs deliver their products through ducts into the intestine and respiratory tree, and many of the acinar epithelial cells in salivary glands secrete mucus.
Mucins are a family of large, heavily glycosylated proteins. Although some mucins are membrane bound due to the presence of a hydrophobic membrane-spanning domain that favors retention in the plasma membrane, the concentration here is on those mucins that are secreted on mucosal surfaces and saliva.
Mucin genes encode mucin monomers that are synthesized as rod-shaped apomucin cores that are post-translationally modified by exceptionally abundant glycosylation. Two distinctly different regions are found in mature mucins:
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Post by bannanny on Dec 19, 2009 19:22:04 GMT -5
Everything you say makes alot of sense Jen... I pray the doctors will make sense of it all too. Please give Karen my love and let her know we're all praying for her and for her docs to be guided in the right direction. You take care of you too my friend... try not to stress and instead, just believe ok?
I love you both very much ~~ bannanny
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Post by bannanny on Dec 19, 2009 19:24:22 GMT -5
I forgot to say that I had no idea the pancreas could be removed. Isn't it needed? Or is there something they replace it with?
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Post by lilsissy on Dec 19, 2009 21:57:57 GMT -5
They used to believe that a person could not live without a pancreas , just the last few years HAVE THEY FOUND OUT THAT IS NOT TRUE,
You have to take a series of shots everyday to replace enzymes and insulin, I am not exactly sure what.
Jen
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Post by Acacian Immolation on Dec 19, 2009 22:15:52 GMT -5
lil sissy... while i'm hoping for Karen's improved health and hoping for your strength to get through it with her like you always have... I've a question... where on that site does it talk about the 'symmetry gene' ? you say that but after searching for 'symmetry gene' and 'silicon based life' together in google or any combination, i've yet to find any scientists saying this. you mean silicon right? not silicone? (silicone is in breast implants, and silicon without an 'e' is the element that is discussed as being probable for non-carbon bilogical life to be based upon) if you could show me where i can find that information, that would be great. all i can find by searching is you saying it here, and crystalriver posting your post on her rumormill news site with the headline talking about reverse symmetry?... would be great if you could clear this up for me. I do suspect that the final stages of transformation into these new bodies of 'white robes' will be silicon-based... and able to weather the scalding temperatures of say... Nibiru passing ... fibers not burning till 1400 degrees etc... but yeah.. i'm curious where you got that info. thnx.
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Post by friskers on Dec 19, 2009 23:37:56 GMT -5
Im sorry Jen you dont have better news on Karens health . If she needs her pancreus out I wish they would just do it instead of her being in pain and having to wait.Im surprized too you can live without one! Shes in my prayers and I hope she doesnt have to suffer much longer~!
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Post by lilsissy on Dec 20, 2009 3:01:35 GMT -5
They don't call it symmetry as I did, they call it Chirality in the article but I do believe thats an easier way to identify it to everyone. My daughter wasborm Mirror image with all her organs in her chest cavity reversed from the right to the left.
From the link in he article. Having different left-handed and right-handed forms; not mirror symmetric. In the case of molecules, the existence of distinct right- and left-handed forms, known as enantiomers, is due to the molecule containing an asymmetric carbon atom. Chirality is an important property of life-supporting carbon compounds. Only right-handed carbohydrates and left-handed amino acids are metabolically active in Earth's organisms. Enzymes, which regulate a variety of biological processes, have the ability to recognize the desired chirality of a substrate. This enhances the versitality of carbon, though chrality is not limited to carbon compounds and occurs in most macromolecules.
This is very confusing stuff and there are a number of genetic arragements invovled that I a trying to wrap my pea brain around.
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Post by fritolay66 on Dec 22, 2009 1:31:55 GMT -5
Please let Karen know of my concern and well wishes for her to feel and become better. Thanks Jen. I think of her everyday and want her to know that. Many hugs to her.
Frito
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Post by chaosonline on Dec 22, 2009 10:09:54 GMT -5
Hi to Everyone, I woke up a short time ago and am finally feeling up to spending a few minutes at my computer First I want give my heartfelt thanks to all of you you for your concerns and prayers.
As you already know I was in somewhat of a Lyme remission last summer until about August. Then I began to experience strange rib bone pain. This was pretty bad pain that encompassed my upper abdomen. Three weeks before I went to the ER I began to have pain in my right upper abdomen. It seemed like I could not eat or drink anything without severe pain. I developed intensely itchy lesions on both arms and my chest. I attributed all of this to Lyme or Morgs.
My lower right shoulder blade had hideous humming and movement and kept me up all night also. Before I knew it I had lost 30+ pounds. When my husbands nurse stopped by she told me I had jaundice I should go straight to the ER. It was only a few days before Thanksgiving and I was planning to make a gigantic meal for 50 some people. She said I shouldn't cook for anyone because I might have hepatitis.
At the ER they did a CT scan with contrast and prodded me with questions to determine what I wanted to know or would rather not be told the way things were looking. I made it plain that I had to know everything ASAP because I have so many responsibilities. So they said my liver, gallbladder and pancreas were badly swollen and the ducts were widely dilated. That it could be due to a malignancy. I told them about my history of Lyme, Morgellons and and other medical history. They admitted me.
I was at Wyandotte, Henry Ford of Michigan and was treated better there than any hospital stay I have ever experienced. They did many more tests, CT scans, MRI's etc. Then after about 4 days they did laproscopic exploratory surgery.
Well the laproscopic part was left in the dust and I awoke to about an 8 " incision. The surgeons said I had a "rather large tumor on the head of my pancreas and hat thay had removed my collapsed gallbladder to give me some pain relief and they did 6 biopsies. They all indicated that the surgeons and the MD felt I had late stage pancreatic cancer.
About 3 days later the surgeons came in and told me they were shocked the biopsies were benign. Wow I felt relieved but it was not to last because much to my surprise several more surgeons and Md's awoke me at 6 AM the following morning and made it plain to me that they disagreed with the pathology and still felt I had pancreatic cancer. I was very confused and on so much morphine I felt like Alice In Wonderland.
My sister Jen (lillsissy) and my sister-in law Dar printed out every thing they could and brought it to me to read when I could. I was very slow to recover any strength and was not even able to process foods even when after 2 weeks when I was released. I was to follow up with another test and more biopsies in a few days.
Before my pending appointment I suddenly began to have hideous pain in the area of the incision. I was still barely able to eat or drink fluids and thanks to Jan Smith who recommended trying baby food did get some nutrition.
The pain overwhelmed me and I went to the University of Michigan because I had read that the bigger hospitals have much higher rates of success with issues of the pancreas. After doing a CT scan with contrast and comparing all films from he first hospital (luckily my sister-in-law had obtained everything) they gave me about the same diagnosis as Wyandotte. They said my pain was due to the spasming of the stomach muscles that had been cut during the surgery and that morphine wouldn't be able to contain it so they added new strong pain meds and muscle relaxers. They have no idea what is triggering the pain but possibly I have 2 abscesses underneath the surgery along with some hematomas. Imagine having an deep 8" incision which cuts through your stomach muscles and then the muscles repeatedly turn into gigantic raised charlie horses, spasming in a rolling pattern, you can't even breath but suck air in in short bursts. Sort of like the final stages of natural childbirth. The ER doc witnessed the muscles raising up becoming hard as rocks and actually moving in a rolling pattern!
They said that even though all biopsies were benign They would have to treat this as cancer of the pancreas and that the blockage has not shown up in the pathology so they too believe the blockage is my pancreas. The head of my pancreas has at least 1 large tumor and the entire length of the pancreas is full of cysts and/or tumors. This is called "Intraductal Papillary Papillary mucinass neoplasm".
I am seeing a surgeon on Jan 4 to go over everything and schedule the surgery. They will remove my pancreas, spleen, part of my bowl and part of my stomach. If all comes back from pathology as benign I possibly won't have chemo or radiology.
I have always said I would never even consider chemo & radiation for this type of cancer but I am kind of hemmed in because there is no absolute diagnosis of cancer. This surgery is huge and will be very tough, even the recovery process is many months. I will have a feeding tube for an unspecified time, possibly many months and will be an overnight diabetic. They will teach me to handle the diabetes and supplements of enzymes.
These cysts they are speaking of are spewing mucin and I kinda think Morgellons might be involved but I also know that Lyme spirochetes hide in pancreatic cells and can burst open.
Now I am supposed to be getting myself strong enough for surgery but I still can barely eat or drink liquids so unless that changes I will have to call the docs and let them know I am losing, not gaining ground.
Sorry for such a long description but there is so much confusing stuff here.
Love to all, Karen
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Post by fritolay66 on Dec 22, 2009 11:08:36 GMT -5
Yeah...I am so glad to see you on!! Thanks you so much for sharing what is happening with you. It has been tough and sounds like it still is. I am so sorry this is happening to you. Is there anything any of us can do to help? Please know I think of you everyday, sending you well wishes and prayers.
Frito
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Post by friskers on Dec 22, 2009 12:01:11 GMT -5
Hi Karen Im so sorry you are going through all this, especially during the holidays. Not knowing for sure its cancer and them still saying it is ..........and wanting to treat you for cancer would make me very uneasy too . i hope you get more answers soon Your in my prayers .
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Post by bannanny on Dec 22, 2009 16:59:02 GMT -5
Oh sweet Karen, I'm so so very sorry you're going thru all of this. I don't even know what to say except I'm praying hard for you and if there's anything at all I can do for you please just ask ok?
I'm glad Jan suggested the baby food, at least you can get some nutrition that way. What do your docs suggest you do as far as eating goes? I would think they would've kept you in the hospital altho I know sometimes it just takes time and you'd rather be home. I just wish there was something I could do to make it all go away... but I can't. Stay strong my friend and know how much we love you and are all praying for your recovery. I'm always here if you wanna talk ok? (661)724-1163
I love you girl ~~bannanny
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tom
New Member
Posts: 48
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Post by tom on Dec 22, 2009 19:00:18 GMT -5
So much suffering, I will pray for you,words I cannot find to express what I want to say, just know I am thinking of you and wish you the best tom
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