droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
We need people to submit info to Katie Couric. If you want, you could make it on the show. It'd be nice to have a real sick patient on tv. Not someone who's symptoms are suddenly turning British (20/20) or someone who's addicted to nitrous oxide and is tired (Dr. Phil)
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Thanks for posting. It would be awesome to have folks sign up for this. I think Katie would do a fair job. She is based in NYC but has a country home, so guessing she might know a thing or two about Chronic Lyme.
It's tough to go public though, especially if someone is having insurance issues (and who isn't?)
Fingers crossed that she's able to get some heavy hitter celebs like Amy Tan and what's his name from the 80s rock band (and why can't I remember his name)???
Posts: 1885 | From here | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Is Daryl Hall who you are thinking about? Started out in the 70's and I would not call his music rock but, still, he's been quite a good ambassador about his experience with lyme.
Remember, SKYPE would be an option, too, for those unable to travel to NYC. They may also send someone to interview at your home but, likely, they don't have staff or budget for that.
Even if you don't want to appear on the program, writing to her might be very helpful to put various patient accounts into perspective.
I hope someone can send this to ILADS, LymeDisease.org - and all the other good lyme advocacy groups. Wish I had energy to do that.
IF they know about this and have a chance to be interviewed, it could really help with the accuracy. Otherwise, they could wide up with the IDSA as "experts" and not even know how wrong that could be. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just in case anyone has energy to contact Katie's program staff with these links . . . or contact the groups below about this opportunity and give them the link, here's a start (just wish I could do it but just can't).
Some of the top Lyme education & advocacy organizations. Each should have a "contact us" link.
Pamela Weintraub (at her Cure Unknown website) & other LL authors -
Posts: 48021 | From Tree House | Registered: Jul 2007
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
LOL Keebler, Daryl Hall is exactly who I was thinking of!
And yes, come to think of it, their music wasn't exactly rock, but they had a pretty good vibe going back in the day.
I take it you're a purist when it comes to rock?? I loved both rock and disco back then. Always seemed to be a conflict of interest. Ha! Don't you wish we still had those types of problems? (or non-problems)
Anyway, back to the topic at hand: good suggestions.
Posts: 1885 | From here | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, I could usually enjoy Hall & Oates. I was a midnight disc jockey at a small radio station when they started taking off to the top. Very nice sound and style, indeed.
A "Purist" regarding rock? Ohhhh . . . never could listen, soooo loud. Good laugh about that, all things considered.
1971. I became very ill my very first semester of college with "mono" and seizures from loud sounds. Hyperacusis was a term I'd not connect with for decades but I sure had it.
I know now that was likely the start with lyme & babesia in Wisconsin - and I had the Bartonella streaks, too, and all the lyme symptoms. Lived on antibiotics on and off all during college for terrible lung infections.
It just went undiagnosed for 26 years until 1997 positive tests (yet still untreated, really).
Good thing it was the early seventies as folk music and soft rock were quite okay - we had some choices besides rock. But I love my FOLK music, acoustic, no electronics, no amplifiers, really.
But even simple percussion has always triggered seizures so that pretty much leaves rock out.
Other than being able to belt out a decent: "I just wanna be a singer in a rock 'n roll band" for comic relief, I have never been able to get near it. Nearly allergic, my ears and adrenal system are to it. My body recoils from the pain to ears and brain.
I envy those who can listen and be involved in all kinds of music, though, and all that spastic light action, too. Don't know how any body can do that but, apparently, thousands can, do and even enjoy it all.
Cell phone cameras have forced me to be ever so much more home-bound than I was before they sprouted up everywhere. I can see why a famous person now & then just hauls off and pops the paparazzi. All those bleeping flashes! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Keebler, how cool was it for you to have been a midnight DJ?
The Eagles remain my favorite band. Guessing they might be one of yours as well?
I never got into the hardcore R&R like so many of my contemporaries. "Stairway to Heaven" is pretty much how far I got.
I confess to loving Disco and Donna Summer. It was and continues to be pretty easy on my ears. But then again, I don't have your hyperacusis issues.
So sorry to hear that you came down with "mono" during your first semester in college. I can relate (I first got sick in college too).
It's sinful that so many get sick during the "best years" of their lives and still, even now in 2013, young people are being diagnosed with ridiculous diagnoses that have no cause and have no cure.
Sorry to hear that you went undiagnosed for so long. And, that you haven't been adequately treated. That's no surprise to me given my own history and firsthand knowledge of these damn TBDs.
I HATE all the lights and loud sounds at today's concerts. I endured concerts on behalf of my kids and had to plug my ears and close my eyes. I don't understand the necessity of the blaring lights and the extreme loudness.
So what do you remember about the early seventies and the music? Peter, Paul and Mary? The Carpenters? The Beatles? Simon and Garfunkel?
Those groups didn't really do it for me, but I did like some of their songs. That's all I can think of for now!
Posts: 1885 | From here | Registered: Jul 2012
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posted
Keeb.. I believe I got Lymed in the late 50's, but my first REAL bout with it was the late 60's.. mono... Then many many years of no diagnosis other than Fibromyalgia.
I loved Peter, Paul and Mary, Simon and Garfunkel, The Beatles, Neil Diamond, the Moody Blues .. and YES, the Carpenters.
I was so impressed last week when I saw a live show that my husband will be playing in this week and a young lady sang two Karen Carpenter songs. She did a great job! Most won't even attempt to duplicate that sound!
They did hits from 50's to 80's.. You would not believe how well they could do Roy Orbison, Simon and Garfunkel, the Beatles, Neil Diamond, Elvis. They were amazing!
--and no, I won't be signing up to do Katie's show.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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