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Lyme Disease Message Board

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thanks you two...

i do feel like such a strnager on here, not many old "faces". but i guess we all have so much going on.

mickie thanks for the encouragement. and don't beat yourself up about the PT, we can only do what we can do and live with it for the moment and try again another day. one step at a time right? :) i hope you will have more energy soon. i didn't realize you still worked even through the lyme. i'm glad you can do that, but i can't imagine how hard that must be. all i can say is you're a trooper.

marsha i'm so sorry to hear the ins mess is stilll goingon. how stressful that must be. i was up in arms when they pulled mine too, but at least now they are letting me go again. i soon hope that they will get it straightned out and cover your treatemtns. you need them. are you still doing iv's or just orals for now?

and thanks for the update about jon, it's good to knw he is tsill fighting. i too will keep in my prayers that he sees some relief and improvement.

i was really sadenned to hear that maureen is still fighting to recover from the pnemonia. t hat is so awful. wahat a strugglle. and i really had had no idea about denise and jeanne being banned. hope they will be able to come back soon. i do miss them a lot, even though i was just lurking this summer.

anyway i have a new tid bit to add about my iv's....they're not happening for the moment. tunrs out that even though dr c authorized them, he's in MO and i live in WI, soooooo i have to have a WI doc sign off and "oversse" so to speak. i went to see a dco that was supposed to help me last wednesday, and get my picc line placed. but that did not happen. i brought in all my positive test results, dr c's history and treaments and this guy loooked at me and the file and said staight to my face.........

"you don't have lymes"

:mad: can you imagine?????

having all the support in the world in front of him and telling me i don't have lymes!!!!!!!!!! he said "yes you had lymes last year, but you've been treated more extensively than i have ever heard of and whatever you have now is not lymes". this is despite the fact that i showed great improvement while on antis and then regressed when taken off. despite cdec positive and more western blots sitting right in front of him. he told me i needed to go see a neuro, have a new set of mri's, new blood tests w/ ms panels, spinal tap...the whole nine yards. i was beyond belief!!! i couldn't beleive what was happening. so i asked him well if it's not lymes now what is it? he looked me in the eye and said "i don't know, but i know it's NOT lymes.". since when do doctors in the middle of treating a disease decide that you no longer have it! would they have doen this to my brother while he died from his cancer....i can only imaine how that would sound.

what follows is all hypthetical but my brother did have and did die from his cancer....this would have never have happened because docs dont' do this to cancer patients but i guess it's ok for lymes patients, but i'm just illustrating using my own expereices so as not to hurt anyone who's gone through the fight with cancer. "oh i'm sorry bill but yes you had non hodgkins lymphoma last year, we did chemo and radiation and a bone marrow transplant. but since you're still sick this year i can tell you it's deinitley not the cancer anymore (despite that the x-rays still show a tumor next to your heart!) i can't tell you what it is, but it's not cancer."

foooooor shaaaaame!!!!! what kind of doc would act like this...i can only think of 2 words to describe this "ego trip". the extent of stupidity in medical field continues to floor me. just when i think it can't get any worse, they top themselves.

so for now, my quest to restart my iv's is on hold until i can find a doc that can help me and know's what the hell lymes is when they are looking at it. i think my mom has found a doc, a dr. meress in fon du lac WI that is known for working with lymes cases. so we are trying there. so far as i know it's a 2 month wait to see him, but we are hoping he can get me in sooner due to the circumstances. i'll keep you guys posted.

hope you are fairing ok, it's monday and rainy here...suits my mood today. but hope you get some sunshine wherever you are all today. take care friends.


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