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Post by grsue on Aug 7, 2006 11:17:50 GMT -5
Was gone for a week, don't delete GRSue!
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Post by TonyM on Aug 7, 2006 12:05:04 GMT -5
Hello Kerry!!! TonyM here, I work alot, but still come in from time to time....and even post....Good work on the latest Media coverage by the way!!!
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Post by tonie on Aug 7, 2006 14:43:39 GMT -5
Hi TonyM,
You must be the "Tony" everyone thought I was when I first came aboard, anyways, hello!
Tonie
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diann
New Member
Posts: 2
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Post by diann on Aug 7, 2006 15:05:14 GMT -5
I'm here, and read read read... I don't say much but I am here. Diann
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Post by patmccccc on Aug 7, 2006 15:19:31 GMT -5
Posting to stay active. thx
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jbb
New Member
Posts: 39
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Post by jbb on Aug 7, 2006 16:16:35 GMT -5
Had trouble registering the first time. Send an e-mail and may have been registered. Then got too tired to do anything. Now, I'm back and registered again. Hope I didn't mess anything up to much. Please keep me now!
jbb
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Post by victoria on Aug 7, 2006 17:39:02 GMT -5
I am very encouraged re: fenben, /still waiting for a research breakthrough in the medical communnity (ha!) I am also of the opinion and have the experience that these "bugs" (meaning whatever causes the lesions and the fibers) are not just as big as the lesions we see, but the size of the "mother" bug is around the size of my hand at the large end of the scale. I have been able to cause these lifeforms (which I have palpated in my muscle and fat ) to show signs of autonomy by gripping them very tightly and holding it as long as I can. The result is a slow retraction of tissues into a tight knot around my fingers. Then, after 5-10 min. it will suddenly have a "release" in which it will relax all its resistence and then try to make itself as thin as possible and slither between my very tightly gripped thumb and forefinger. This has been a repeatable demonstration hundreds of times and in as many locations as you can think of. You could try this on yourself, say on the thin skin of your forearm. Hold it very tightly for quite a while, then see if there is any reaction. I would even feel a bite-like intensity to the pain that would eventually result. The fact that the extra pain does not occur until a few minutes into the experiment, and along with the thickening of tissues (the retraction), was very interesting. Also, in my stomach area, where I gained a pooch about a year ago, (never before) I was also able to distinguish a shape within my fat layer like a ring and inside that ring is one place where the "organism" was sensitive to pressure. I found that if I held a grip for a significant amount of time to this "sphincter-like" feature I was able to damage it and cause a reduction of symptoms in that area. Also, this experiment is only for those in touch enough with their bodies to know when enough is enough. I actually bruised myself and was sore for days, but the fact that I do not retain the pooch (4-5 fewer bugs there if this crazy hunch is right) and have gotten rid of a couple of "nests" on my chest and arms by doing this. I had stopped having a period for a whole year, which I suspect others also had this symptom, my gyno said that was normal, but I recently had a normal one, and I thought maybe if what I was doing was lessening the "load" I was carrying and therefore regained some of my body's hormonal equilibrium then that would explain the timing coincidence of them both happening at the same time. Just wanted to mention this. I know it sounds crazy, but I have become convinced after seeing the same result over and over. This theory would work along with the "bigger-bugs-inside" theory.
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Post by kiki on Aug 7, 2006 17:51:42 GMT -5
I've been a frequent reader for about a year but really had nothing beneficial to offer, and frankly was keeping myself in a cozy state of denial. I suppose by not seeing my own words I was able to remain an observer. Is'nt it an amazing gift that our brain can shield us when our struggles to accept the unacceptable threaten our ability to function, by allowing one to "go into hiding" so we can grasp our reality at a pace we can manage? I am blessed to have a Dr. that has NEVER doubted me. Never. She comes from a long line of dedicated, talented and widely respected physicians/surgeons. She does them proud and I thank God for her. For the past year she has run all the logical, numerous illogical, and a sprinkle of totally "out of the box" tests. One came back showing a high titer for babesia. She had me on clindimiacin(sp?) and quinine sulfate for 2 months for that-even fought my insurance co. (and won ) when they didn't want to pay. She also perscribed 2 doses of Ivermectin. There have been other "exploritory treatments" as we privately call it. She reads anything I give her and while she rules some out immediately, she explains WHY. She sees me monthly and my appts have never been shorter than 2 1/2 hrs. She reminds me of a cartoon bull- red with frustration- such is her determination to "fix" me. She's tried to send some samples of something she found on my skin but once she saw it hop off the tweezers and another sample "escaped" en route to lab. After a local derm failed to be as impressed as she saw fit, she sent me to Johns Hopkins but made it known she was not convinced that was the best place for me but would start there as its only 1 1/2 hrs. from where I live. My appt at J.H. was last wk. I saw the chief of I.D. and an intern working "under his wing". They both examined me (separately) and the intern asked if I had certain symptoms(I do). After privately comparing notes, they came back and said there WERE conditions that would cause my symptoms and are running tests. One thing mentioned was a "rather novel" hair follicle infection that can cause untold problems including joint issues. I hope my next statement doesn't rile anyone, but I hesitated to bring my appt up here as I am aware of the distrust(not saying it's not justified) for the medical community. I only know that I have to be positive. If I'm asking a dr to be open- minded with me, tis only fair to return same. BTW, I have only had 1 sore-put a potion I made per dr. and after peeling myself from the ceiling, let it exposed to air till bedtime when I put neosporin+pain relief cream and a band-aid on it followed by a lintless cotton footie for good measure. In the morning I put more of the potion over it(with no pain to really speak of) and kept it uncovered from that point. It got an enormous and heinous looking scab that morning and I FORCED myself not to so much as breath on it. I did not even dab a washcloth on it -gave my dr. my word not to touch it--no excuses, no exceptions, period(even wore jammies and cotton mittens fashioned from an old pillowcase that my darling husband found much too amusing! I certainly had no intention to write a novella but please consider this my wish to remain on board. If anyone is curious about the exact "lotions and potions and meds I've used, I'll be happy to share. I can truly say that I noticed some degree of improvement after every single course of treatment. Caution-some were brutal before eliminating or relieving symptoms. Thanks for taking the time to read about my version of our nightmare. Hold on to hope- nobody can take it if you refuse to let it go. If yours has been misplaced, damaged or abused I'll share mine till it returns-I'll PM or call anyone, anywhere that asks. Sain demain!
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Post by victoria on Aug 7, 2006 18:44:59 GMT -5
I would indeed like to know what it is that you put on your sore. Please let me know. vjacobs@socal.rr.com
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Post by Patti on Aug 7, 2006 18:55:05 GMT -5
Vivibelle,
Welcome to you and all the others we haven't "met" yet.....we appreciate you coming forward to introduce yourselves but also understand totally how some of you prefer to only read here. Either is fine with us but I have to say that so many will benefit from your message Vivibelle!
Your physician seems like a dream come true and I can only imagine how grateful you are to her. It's such a big deal, this trust that we as patients crave, and to actually be believed means even more. That you fought your insurance company and won certainly a feat to be proud of and I know it will help others here to stay motivated in their own individual struggles.
Thank you for coming forward and we hope to hear from you again. What you offered is very beneficial and we thank you for it!
Hugs, Patti
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Post by PaLady on Aug 7, 2006 20:43:26 GMT -5
Kerry, I had trouble getting my registration straight but Patti finially got me in. She said she would clean things up by getting rid of the other names I tried to register with. All except PaLady please. I don't post because I really don't have much to add. But I am sure happy to have a place to come to and find others who are dealing with the same things I am. It keeps me sane. I wish I had something more to contribute, but for now my gratitude will have to sufice. Thanks, PaLady
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Post by freaky on Aug 8, 2006 4:03:15 GMT -5
Hi Kerry, Just to save you a little more time, I'm not sure I was signed up as msmyalgia, but I noticed I was signed up as Twap, for the reasons explained above. Let's hop on the wellness trolly. Come on Kerry. Lub, freaky I can see it a coming up the road a bit. Ya'll come to. Be sure to wave your bandanas, or it'll pass us by.
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Post by quietone on Aug 8, 2006 4:18:52 GMT -5
New here
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taxi
Junior Member
Posts: 84
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Post by taxi on Aug 8, 2006 5:19:22 GMT -5
Hello...I'm new...please don't make me go away. This is an awesome site, btw!
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Post by anntbush on Aug 8, 2006 7:41:39 GMT -5
Hello Admin, I mean absolutely no harm in this message. I understand people leaving threatening or mean posts are not what we want here. I don't know If what I read is true about people recently being banned from this site. I don't really know why, and it is none of my business. I would just like to request if there is ANYWAY possible to allow people on the support section only? Sometimes this illness makes people act, you know, kind of whacky. But it is just my humble opionion that everyone could use support. Please consider my request. I respect whatever your decisions are, of course.
Respectfully yours,
ANN T. BUSH
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del
New Member
Posts: 19
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Post by del on Aug 8, 2006 7:53:19 GMT -5
I dont say much but i read here frequently the site was the best thing I have found to help me. Thanks everyone for all you do.
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Post by Admin on Aug 8, 2006 8:30:13 GMT -5
Hello Admin, I mean absolutely no harm in this message. I understand people leaving threatening or mean posts are not what we want here. I don't know If what I read is true about people recently being banned from this site. I don't really know why, and it is none of my business. I would just like to request if there is ANYWAY possible to allow people on the support section only? Sometimes this illness makes people act, you know, kind of whacky. But it is just my humble opionion that everyone could use support. Please consider my request. I respect whatever your decisions are, of course. Respectfully yours, ANN T. BUSH Dear Ann, People get banned from this site if they break our rules and regulations, if they are disrespectful and disruptive to our other members and/or this fight we find ourselves in for disease recognition. If you have questions about the policies here, please write to any of the Admins and I promise that we will be honest and forthcoming with our answers. I wouldn't rely on hearsay though, it can have hidden motivation and going to the source (meaning us) is the best way to know if, and then why, we did something. Your suggestion about the support section is a good one, but unfortunately the forum is not set up to work in that manner. I think we all understand how the disease can affect our emotions and state of mind, but we have 1200+ people who are able to stop their frustrations from getting to a point where they are downright mean to others. Most of those who have been banned most likely had harmful intent before ever registering, and the rest were repeat offenders. Very few have come back to ask why they were banned because they know why; a couple who did ask and subsequently apologized were happily let back in. We care deeply about the sufferers of this disease and don't want to keep anyone out unless it's absolutely necessary for the good of everyone here.
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Post by Ms. Kitty ( kraz as a kat) on Aug 8, 2006 21:37:53 GMT -5
keep me please, ms. kitty/ladycop10
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meme
New Member
Posts: 34
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Post by meme on Aug 8, 2006 21:57:21 GMT -5
It's Memememe, and I'm actually singing a Lil bit today,,,, Expected a horrible time with full moon and it wasn't ? Coming off Cats Claw for a couple of months, back onto Bactrim. Actually can't wait to go back to Cats Claw and might try them together this time,,,just not sure. !!! OK, keep me and I'll shut up for now !!! clearing my thought AAAAAHHHHH Meemmemememme !!! Ant, the "the" out seems a little more off the deep end than usual for you ? Hey Jwf,,,,hey Tarantula38,,,,hey everyone !! I don't know where I'd be without you guys !!
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elka
New Member
Posts: 11
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Post by elka on Aug 8, 2006 22:12:50 GMT -5
Please don't delete me. I haven't posted for a long time, but I read on a regular basis
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