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jsl123
12 y
983
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iv got the top proffessor that works with rare conditions and diseases on my case now working with the head of dermatology and immunology. he said to get comfty and relax becasue he said he wasnt letting anyone discharge me till they find a diagnosis. so that made me feel good. i guess he was a one of the senior proffesors i guess thats good just thought i would keep you;'s updated its been a pretty quite day really just had all the swabs with the pathologists and spoke to the immulologist that said there now testing for certain antibodies in the blood for indicators and also spoke to the professor. he said he is always called in when the doctors are a bit puzzled and need some extra thinking. so im happy that they actually accept that something is up rather then the old just put lip balm on. i showed him my videos and pictures and some of you guys pics on the forum. so yeah there definately trying everything they can. and im so happy that this is going on becasue i will be able to have a clear head. i was getting really frustrated with the doctors i was seeing that werent really taking my case seriously.
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- Re: update jsl123
12 y
855
This is a reply to # 1,986,239also healing i spoke to him about your cyclosporine and he said he found it very interesting that it didnt respond in any way. he wants to know how long exactly you were on it???
- Re: update jsl123
12 y
857
This is a reply to # 1,986,240sorry for all the posts aswell guys i know some of you get frustrated and angry over it. i promie ill stop once i have cured this mothhaaaa fukkaaaa :) hopefully sooon!
- Re: update Vunk
12 y
911
MoreThis is a reply to # 1,986,241The specialists team seems to have a lot of conviction to fix this bug and it's pleasant to see that, overall when they want to look further than simply putting lipbalm. At least, it starts in the right way. I hope the biopsy will show up something concrete.
- Re: update jsl123
12 y
835
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This is a reply to # 1,986,252Advertisement
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how is your exzma cream treatment coming along vunk??? yeah i hope so they took heaps of swabs today and got alot of white gooey stuff on them so i reckon if the pathologist anaylse that in depth it should show something i mean this ec crap is something it cant just be nothing!!!- Re: update Vunk
12 y
997
MoreThis is a reply to # 1,986,254Yep there is definitely something wrong with our lips well more vicious than just chronic chapped lips. By the way I can't understand some physicians who still want to prescribe us any moisturizer while we tell us that we have been chronically affected since so long. No they don't consider it, aren't ashamed to suggest any trivial balm to apply for one week. Extraordinary.
About my contact dermatitis cream, it doesn't seem very effective.
Well I'm currently seeing a derm whose I showed these two pictures of my condition :
//www.curezone.org/ig/i.asp?i=60879
//www.curezone.org/ig/i.asp?i=60880
I also talked about this forum in the folder I had made up. Well I plan to have a full allergy test in hospital, then a colonoscopy to see if I have some kind inflammation in my bowels. If nothing comes up, we would plan to make a deeper biopsy with more complete tests.
By the way I wonder if I should make my biopsy first.- Re: update jsl123
12 y
1,048
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This is a reply to # 1,986,263let your lips go wild and crusty and gross and go in and get a good size biopsy done and get it anylyzed and cultured for everything and anything.
i had a colonoscopy and endoscpy and everything is all good infact he said my system was great! also another lady had colonscopy and she was all good aswell. i would definately get biopsy, swabs and blood tests done properly and anaylzed fully. then maybe consider colonoscopy- Re: update Vunk
12 y
842
This is a reply to # 1,986,267Advertisement
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Yep but it would be good if I knew what to test. When you talk about swabs, what kind of swabs are they? Except a biopsy of your lips, did they do some others?
Your stage in hospital will clearly show up more informations than I can have and it would be good if one particularity emerges from your analysis, I would be able to check about this element precisely, among others leads.
You said that your results will come up in about 8 weeks? Damn, that's so long.- Re: update Healing2021
12 y
906
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This is a reply to # 1,986,286JSL,
I think the Cyclosporine showed minimal improvement. My crusts stopped turning yellow and they were very thin. Also they would peel off every week as opposed to every 3-4 weeks, when leaving them alone.
And I was on it for 6 weeks.
Also you keep saying to let our lips crust up and go get a biopsy. But it wont make a difference whether they are built up or not. In fact it will be easier to get the biopsy if they are not.
Mine were built up when i got my biopsy and they had to cut through the crust and stuff.- Re: update jsl123
12 y
821
This is a reply to # 1,986,303mmm 6 weeks i thought you were on them for longer i would expect 6 weeks to be long enough if it was going to work dont you agree? i mean you obviously didnt think it was working becasue you and your doctor decided to stop.
vunk in rgeards to biopsy firstly get f***ckcininigngggg virus's and wart virus's tested for tell your doc to get the pathologists to test for everything!!!!!!!!!!!!!!!!
my biopsy results will start to flow through by the end of the week there culturing for everything so not everything will take 8 weeks.
healing my doctors said its best to get biopsy's when crust is on becasue the markers in my blood are showing no signs of infection or anything so they are thinking it might just be a locaalized infection living and bredding in the top 2 or 3 layers of the lips.
in regards to doctors saying this is dry lips i only ever had one doctor say that and i never ever went back to them again. i actually found it very insulting for her to suggest it was just dry lips. simply becasue she had no answers or plans of attack. she almost in my opinion thought it was to hard and gave up! very sad- Re: update Healing2021
12 y
768
This is a reply to # 1,986,313JSL,
So your saying your doctor took a part of your crust with your biopsy?
Because that would be the only reason why getting a biopsy with crusts on would be beneficial.- Re: update jsl123
12 y
960
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This is a reply to # 1,986,315Advertisement
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yeah he did. but i was on aldera a few days ago so i dont know if that would affect the biosppsy if nothing comes of it there going to take another one.
anything to get rid of this fufckckcininngggg crap.
vunk swabs as in the big cotton buds. they rub it all over your lips and take samples of the white gunk and little bits of crusts. they culture all of it its similar to what they do with a biopsy. its very good to get swabs it pics up all possible infections and all that crsapppppppppppppp
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12 y
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12 y
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12 y
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12 y
842
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