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Post by bugsy on Oct 4, 2007 8:06:24 GMT -5
Liatrias, for the record I am well aware that ELIZA tests are c r a p. I've read about people paying out of pocket to get their own Igenex test. Abbienormal for one eh... $$$$$$$ But I live in a one horse town you see and unless I'm willing or able to pay out of pocket I'm SOL. In case anyone doesn't know what that acronym stands for it's S h i t outta luck. Thanks for stating that anyway...some may not know the difference who are reading. ~Bugsy
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Post by godog on Oct 4, 2007 9:03:40 GMT -5
Thanks Abbie, Moe, and everyone. Liatris, thankyou, this is why I started this thread, because I know that some lyme tests are good and some, not so good. I am not one of the sciencey ones on the board, pllus brain fog, no memory, etc. So this info you have posted is the kind of stuff I need. I will copy this down and all info on this thread to show my doc. He is not learned on the subject of lyme and morgellons, and he is trying all the cheap stuff first, for me, because this clinic is the poor people clinic. I am going to print out some stuff and some links and Liatris, your info, and he is very willing to treat me and learn at the same time. I think I might have found a gem of a doctor. I am so happy I have chills! So, I'm not blaming him for these initial tests.We're doing all the cheap, free stuff right now. He is on the verge is much learning and that it so good for the up and coming lyme patients and morg patients in the area. If we can educate these doctors, well, that just is wonderful for the patient and the future patients. I am as happy for the morgellon cause itself, as I am for me, to have one more doctor "in the circle of trust". (Meet The Parents) Plus, this clinic is a government funded clinic. I guess they are part of our Missouri Health Department. This is the ones that did a study on morgellons, I don't think it was called morgellons then, and stuff was found and apparantly buried or forgotten and now the Missouri Health Department "doens't know anything about Morgellons and never heard of it" and actually gave me links to the mrf site and another one. She also said they may be , I forget hwo she put it, that I would find out new stuff at those links or something like that, and I remember telling her, yeah, I'll find out before you guys. I meant that in a derogatory way, as they obviously aren't interested in morg. or getting up to speed on it or interested in me as a morgellons infected person, even though their website, the Missouri Department of Health website says 'they want to put an umbrella of protection over the people of missour, and one of their aims is to investigate outbreaks of disease'. So, I am very happy to find this guy in their system. He said more or less that no matter what the tests say, he will continue treatment till one of us gives up. So I took it to mean that he is going to do his best and I guess that's all I can ask out of any doctor. So, I am in a hurry, going to work, but I need to reread this thread for all good info to show my doc and if you all think of any link or page or letter or info that you would want our doctors to be aware of, post it. We are making a lyme/morgellons course, class, whatever for these docs. Hey, what a good idea we need to design and make an educational course, with peoples pics videos, whatnot and package them for all our docs and who everever, along with Microdots Documentary. Just all our pooled info in a package, like home schooling, for thses doctors and whoever else, send one to cdc too. Ha! Anyway, thanks all.
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Post by morgellonsmoe on Oct 4, 2007 9:43:46 GMT -5
godog : Bring the new letter from The mrf that was posted regarding Dr Harveys findings and the address email that your doctor can write to . Also being a print out of the CDC pages deleting DOP and writing about Morgellons . These two items will be from reputable people and not us on line ( that turns docs off ) and any more info will over whelm him , Good luck
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Post by godog on Oct 4, 2007 17:36:03 GMT -5
Yes, the letter and cdc pages, that would be good. And some other stuff as well. I am thinking it would be good for him, if he is so inclined to use the computer, to come here as well and just read what our group is going through. But, Moe, like you said, I don't want to overwhelm just yet. Baby steps. But, I would like for him to see and read ALOT. I had a nurse prac. from this clinic said somthing to the effect she wished we (patients) wouldn't go on the computer. She's gone now, and now I see Dr. C. But that is as stupid as saying, 'oh, I wish people would just stay away from that old library. Just gives them ideas!" I mean, is that stupid or what? But, yes, alot of people have that attitude. Anyway, I have been searching for help since '95, so I am very excited to have a doc that will listen and wants to help me.
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Post by godog on Oct 4, 2007 19:44:21 GMT -5
Oh yes Freaky, thanks for those links. Just now reading everything. And thanks to all for all the thumbs up and good links and info.
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Post by freaky on Oct 5, 2007 5:46:17 GMT -5
Golly Godog, thank you for thanking me because that made me feel special. Tonight I feel like left over spam thats been sitting out for a couple of days My dogs won't even lick me. Tonight was my mothers 87th birthday. I called at 2:00, & said I was coming over. I got there at 6:30, & my Dad said, "I'll never know why you can't make it here at least by 4:00, and spend some time with your mother. I just don't get it." I didn't have the heart to tell Daddy his favorite daughter is suffering from cognitive dysfunction, brain fog, lack of concentration, etc. Somehow I'm going to have to break the news to him. How sad he will be. He should already know, but we overlook the things we do not want to accept. Tisk tisk. This is the truth. I'm screwed up, & I can't seem to make me better. Boo hoo, boo hoo. I hear we're supposed to get our brain back when we get well.aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah. Must be bedtime. duh. Thanks again godog - What a babe.
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Post by godog on Oct 5, 2007 9:30:10 GMT -5
Yep, I know what you mean, I just can't seem able to connect with family. I am too tired!!! And I can't keep straight everybodies birthdays and I keep losing my birthday list and I'm ashamed to ask for the 3rd or more time. But at least now, I have my test results and I can wave them and shout "I TOLD YOU I WAS SICK!!!!" I want that put on my headstone.
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Post by reasonable on Oct 5, 2007 15:36:29 GMT -5
I can wave them and shout "I TOLD YOU I WAS SICK!!!!" I want that put on my headstone. What, just like a grave at Key West cemetery - it's been done already. Glad you found a good doc.
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Post by liatris on Oct 5, 2007 19:15:37 GMT -5
Hi BUGSY - you said: Liatrias, for the record I am well aware that ELIZA tests are c r a p. I've read about people paying out of pocket to get their own Igenex test. Abbienormal for one eh... $$$$$$$ But I live in a one horse town you see and unless I'm willing or able to pay out of pocket I'm SOL. In case anyone doesn't know what that acronym stands for it's S h i t outta luck. Thanks for stating that anyway...some may not know the difference who are reading. ~Bugsy Bugsy, good, I am glad you know - so many are unaware of this and it is frustrating to see so many sick people being led "down the garden path" with b u l l s h i t energy-wasting, money-wasting, hope-wasting testing. Ugh !!!!!!! Yes, I do hope people who did not know this have read my previous post. [glow=red,2,300] For anyone who does not know this, though Igenex is a good lab, their antibody tests are not going to reveal a case of Lyme or anything else if the person's body has not been able to make antibodies.[/glow]
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Post by liatris on Oct 5, 2007 19:27:50 GMT -5
Hi Godog -- I understand the brain fog and yes, you have to work with what you have when it comes to doctors and the system and I wish you the best. I have always found that it pays to learn as much as you can yourself because it is mind-boggling how little doctors know and yet are authorized to go on "treating" people.
I am not bragging but years ago I learned enough about the body and medicine to make calls to researchers and MDs AS an MD and it takes knowing SO little to pull it off. I have made these calls as an MD in order to get information that I, otherwise, would not have access to. THIS is the wild part - I have been offered positions as a physician at THREE clinics - one being in South Africa - this job offer was based on the knowledge I had that produced from me a few piddly questions that I asked the particular MD/researcher. I apparently sounded brilliant to him !!! In that particular case I had only researched the specialty/treatment modality at their clinic for a couple of hours !!! I am persevering but not a rocket scientist so this is SCARY !
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Post by robertalouise26 on Oct 5, 2007 20:48:22 GMT -5
WOW Liatris!!! Love and best wishes. Roberta.
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Post by godog on Oct 6, 2007 11:38:21 GMT -5
So, you're not really a doctor, but you stayed in A Holiday Inn Express? Hahahaha, anyway, so you are a doctor or no? I'm cornfused. Yeah, we're doing free stuff first.
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Post by liatris on Oct 6, 2007 17:40:18 GMT -5
Hi Roberta - Love back to you.
Hi Godog - Nope, I am not a physician. Too bad I cannot get paid a fraction of what they do (if I was well enough to work) - I'd do a lot more good for "patients" than most doctors do. Most of them are truly pitiful. How dare they collect money for what they do !
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Post by reasonable on Oct 6, 2007 18:22:40 GMT -5
Brava Liatris! I absolutely agree: it's stupid to trust your health - your life, really - to someone for whom it is just a business. It's always your own decision in the end. It pays to be informed.
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