posted
Hello everyone, I believe it has been posted previously by Wiggy. Thank you Wiggy. The special PrimeTime Medical Mystery series. Chronic Lyme Disease as it pertains to ALS and MS.
This was originally to only be a 1/2 hour spot. They are adding more detail to create a 60 minute spot. This was to air Jan 10 but the latest update says it could be February.
I will keep everyone up to date and post when we have a definitive date. They interviewed us, another patient, my Lyme doctor and Amy Tan (Author of Joy Luck Club) as well as a few other doctors dealing with ALS and members from the Infectious Disease Society.
Should be a great spot to help get the word out and we hope it helps many people even if it's the simple idea of....hey, I can eradicate MS!
Anyway, I would like to post my story in the near future and look forward to meeting online with many of you. Best Regards, Karl1
posted
Hi Karl, So nice to see you here. There are many people who are very interested in you and your story.
Let me recommend that you move this post to the Medical forum.....someone has already posted about your interview and the show there. Many more people will view your post there vice the Activism area.
Keep getting better and keep us posted! Lexy
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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bettyg
Unregistered
posted
Karl, please leave your post here; this is important on ACTIVISM.
but you can also copy/paste it to YOUR own thread in MEDICAL since so many REFUSE to visit this part. PLEASE COPY MY BROKEN UP VERSION though so it's readable ok!! thanks my new friend.
i so look forward to seeing this. I hope you able to give us a 24-hr. notice so we can plan on sitting here watching and/or setting VCRs to tape the show!!
god bless you for posting and consenting to be interviewed! we really appreciate getting this aired!
were you told WHY the tv show decided to do this show? i hope they told you!!!
karl, please break up all posts/replies into paragraphs like i did yours above ok. majority of us have neuro lyme and can NOT read or comprehend solid blocks of text.
hit the enter key twice after EACH paragraph like i did above. mark the lower left hand corner showing you want ALL REPLIES sent to you.
if you are editing, do all above then click edit send button ok! thanks so much karl!!
posted
Infectious Disease Society?? Yikes!! That could be scary and actually spread misinformation. Too bad they didn't interview real Lyme docs from ILADS. I pray it wasn't the WORM and buddies.
I think it's great you are willing to share your story. I really like that show Mystery Diagnosis.
It's a shame that Lyme is still considered a "Mystery".
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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posted
Hi, I'm following this story too as I really want my friends and family to see the show.
Just to clarify, "Mystery Diagnosis" in on cable/satellite TV, on the Discovery Health network. "Primetime Medical Mysteries" is on the ABC network and not a regularly scheduled show. They are both good shows.
I heard from someone who is a patient of a CT LLMD that LLMD's were interviewed as well so I think this will get appropriate coverage (probably rake IDSA over the coals, I hope).
Regards.
Posts: 1 | From Virginia | Registered: Jan 2007
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posted
Hi all. Thank you for the encouragement and the thoughts and teaching me more about everyone and the site.
I will copy this to the Medical forum, also.
I'm pushing for early notification to let everyone know, but I really want a definitive date so we don't have to keep changing.
The producer's father and sister both had and have Lyme and was and are quadrapeligic (sp). Her father passed away. So the producer does have a real reason to get this to the public and work on change.
My Lyme doc, they interviewed first, is the past President of ILADS and is very much on top of studies/research and presentations out there. ABC contacted him to do the story based on their research.
I believe they wanted my story due to the severity of my case- 23+ lesions and how we got into and the success of antibiotic treatment.
All lesions have stopped in their tracks and there are no new ones after 9 months and 9 antis. That's pretty much all I know about why.
I feel the producers know the direction this spot should take and I know they interviewed many of the "good guys" to elaborate the correct viewpoint, not the IDSA ignorance.
The producers were extremely knowledgeable about Lyme, MS, ALS,CPN, etc., and asked us simple questions of just what happened.
Also, our thoughts on the treatment how we got started and my meds and what i'm able to do now that i couldn't when this hit me.
It was off the cuff and not scripted. Should be great.
-------------------- Uncommon inner strength must defy gravity! 5/4/06 MS. Lyme, Babesiosis, Chlamydia Pneumoniae -respiratory infection. 9 mos./9 antis. 85-90% better. Now on Factive, Doxy, Rifampin. Used, Mino, Azithro, Mepron, Rocephin, Tini, Diflucan. Posts: 51 | From CT | Registered: Jan 2007
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
As I am out of the country, is there anyone who would be willing to record this on DVD for me and mail it to me???
I will happily pay for cost fo DVD and postage.
I so want to see this program.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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bettyg
Unregistered
posted
karl, boy, am i glad you posted and emphasized the producer is DIRECTLY involved by family members with lyme!
so now that reassures me they'll have a LITTLE IDSA but not much to emphasize the CHRONIC LYME end of it!! halleluah! good news.
dll, i'm sure someone here will be happy to help you by taping/mailing it to you! this is too important to ALL OF US INTERNATIONALLY!
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posted
I certainly will get a copy. Maybe I can burn cd's too, but I also had a thought, that perhaps they would be willing to have these played online in some fashion.
I'll ask the producers and let you know if this is possible. I'm just getting started.
Best Regards, Karl
-------------------- Uncommon inner strength must defy gravity! 5/4/06 MS. Lyme, Babesiosis, Chlamydia Pneumoniae -respiratory infection. 9 mos./9 antis. 85-90% better. Now on Factive, Doxy, Rifampin. Used, Mino, Azithro, Mepron, Rocephin, Tini, Diflucan. Posts: 51 | From CT | Registered: Jan 2007
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bettyg
Unregistered
posted
great idea karl!
we have MANY international folks:
canada, england, norway, germany, japan?, poland, chinca, one of the new states of russia's breaking up,
these are the ones i can think of off the top of my head, so please if someone from a country NOT mentioned, please add your country on this post!
it's so expensive overseas mailings vs online FREE! glad you thought of this.
posted
I got a letter from my support group about the show. They said is was on the 10th of Jan. I will call them to see if they know it has been changed to another time.
We do get that channel here in the Toronto area.
Take care your friend Cassie
-------------------- Posts: 564 | From Toronto Ontario Canada | Registered: Jan 2002
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posted
Anyone know the status on this show ever airing? It's June already, should we be worried?? Posts: 227 | From South of the North Pole | Registered: Jan 2007
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bettyg
Unregistered
posted
dancer,
you definitely posted in the right spot where we can find out ACCURATE info since karl was interviewed and has DIRECT CONTACT WITH TV PRODUCERS!!
karl, please update us all; we've been on pins/needles since you wrote this please! thanks!
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Well folks, you can add Switzerland to your list of members, as my husband has just accepted a job there, and the family, five of us, are moving asap.
I'm excited and angry. We just moved the kids two years ago, to Alabama. Not the most diverse area, but they just made friends.
Off to Switzerland. I hope the show doesn't get a solid date and air before I get my T.V. hooked up over there.
I'm anxious to get a date on the calendar.
Thanks, Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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