posted
The discussion in Betty's posting is amazing. It's nice to see others knowledge of the show and those included.
The show may now air in February. Again, as soon as I have a definitive date, I will re-post. It could possibly be followed online at www.abcnews.com
Best Regards, Karl
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 04 January, 2007 07:54 PM -------------------------------------------------------------------------------- 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: 104 | From: Illinois | Registered: Jun 2006 | IP: Logged
bettyg Frequent Contributor Member # 6147
posted 05 January, 2007 12:28 AM --------------------------------------------------------------------------------
quote: -------------------------------------------------------------------------------- Originally posted by Karl1:
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 --------------------------------------------------------------------------------
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!!
-------------------- Betty Gordon,Iowa;5 yrs SSDI disability; Approved 7-1-05; retro 3 yrs medicare! Misdx 34 yrs. until 6-04!diabetes 2, glyburide,5-06 allergies: mold, gluten & casein/cow's milk. A TRULY HAPPY PERSON IS THE ONE WHO CAN ENJOY THE SCENERY ON A DETOUR.
-------------------------------------------------------------------------------- Posts: 7242 | From: Ames, Iowa, USA | Registered: Aug 2004 | IP: Logged
bigmamma Frequent Contributor Member # 7181
posted 05 January, 2007 06:53 AM -------------------------------------------------------------------------------- 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!
posted 05 January, 2007 10:19 AM -------------------------------------------------------------------------------- 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 | IP: Logged
Karl1 Flash Member Member # 10922
posted 06 January, 2007 11:49 AM -------------------------------------------------------------------------------- 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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bettyg
Unregistered
posted
karl, so glad you copy/pasted here especially with your update at the END of your post that it will be about CHRONIC LYME emphasis and a BRIEF bit on IDSA standpoint ... that had us all worried!
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dang, I just boughta dvd recorder for that show! Well, I need to exchange it, so I will have more time to do that.
Try to convince the MS people of a possible misdiagnosis. I'm a living proof (among others here), that MS might possibly be a bacterial infection and can be cured. They will not listen! I tried hard, believe me, but they just don't want to know about it. I guess, they enjoy their suffering too much *meanoff*.
Please keep us posted,
Sonja
Posts: 35 | From Arizona | Registered: Dec 2006
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posted
Thank you Betty and Sonja. I will update as soon as possible.
I am currently in a word battle against the ignorance of the moderators and others at msrefugees.com I stated in my humble opinion and direct experience....I am curing MS. It's firstly, the optimisim one needs to fight any battle and secondly, I know it works directly- I've done it and working on finishing up slowly- of course.
They slammed me 3 times so far along with some nurse with supposed 20 years experience telling me plainly, based on her experience..." You're not cured" She doesn't know me or my situation on any level.
She hasn't heard my story. She hasn't been informed of the validating points of recovery after herxing. What does she think the treatment for TB should be?? Hello.
She perpetuates the need to keep MS patients in the dark as they all do. Simply ms patients can continue their standard ms meds and do antibiotics too, even...with a glimmer of hope that it works for others, why wouldn't they just try it? It's less invasive than ms meds, chemo, steroids, plasma exchange, etc..Why do they want to live with MS?
The guy slamming me stated in another post how awful he's doing and issues he has with his internal organs. So why wouldn't you go...hmmm, maybe I should try antibiotics.
This guy, for example, is doing 90% better in 9 months with 9 antibiotics and I'm still awful years later....and after all the antibiotics he's taken he doesn't have problems like me??....hmmmm....blah, blah, blah...
Yes, I'm lucky I've had no other problems, but I've monitored each step very closely. They are simply continuing the ruination of many people's lives.
I intend to keep up the fight just to keep posting the possibility of help. I can't stand ignorance or the simple squashing of one's optimism in a fight for a proper life. They didn't squash me....they made me stronger and more angry which only helps me fight.
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
karl, there is squibbling on every board and currently is here too.
glad you joined us with such WONDERFUL LYME/MS NEWS ... finally a good, informative tv show that hopefully our family/friends will FINALLY understand alittle.
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please don't give up. I joined a pretty decent MS board before I realized, that it was actually Lyme destroying my life.
Anyways, I thought, these guys are on a mission and are looking for a cure - I never was so wrong in my life!! Obviously, they like shoving 1600$ a month down the pharma industrie's throat, just to make themselves feel bad.
I still receive the MS Magazine "The Motivator". I can't really put it into words, how much motivation it is, to be prepared to sit in a wheelchair in a few years and have my young children push me around in it. I am sooooo angry and frustrated with the whole MS society!!
I have a bunch of MS/Lyme links. Would you care for them? I can PM those to you if you like. It's a lot of info and I can't read it right now - too much brainfog Let me know and I'd be happy to share.
Have a good Sunday,
Sonja Posts: 35 | From Arizona | Registered: Dec 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Karl,
First off, thank you for the information on the tv show. Most of us here are eagerly awaiting on many potentials that could help open up this misunderstood illness of lyme and co- infections.
As far as the squabbles and people not wanting to listen to your advice....... I only wish that ANYONE had come to me and told me of the lyme controversy.
I think one problem you will face in trying to "convert" is that even if you start to penetrate a M.S. patient, the first thing they will do is talk to their neurologist.
Guess what....that neurologist is going to basically make YOU sound like the crazy one, will say something to help the patient realize that M.S. treatment is the only way to go and who do you think this person will listen to?
Their beloved doctor or some stranger trying to help? I know...it's SAD. I have two friends with M.S. that I basically had told to watch the tv show....the one that won't be on the 10th anymore.
But since I know *I* can't reach them to atleast TRY...perhaps something will be revealed on a tv show with credibility to turn the light on in their heads.
I think all of us with lyme have this need to "save the world" but in reality, we get pegged as kooks. What can you do?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
They have been advertising it to be on tonight, but with the President's speech, I guess we'll just have to wait and see. I have my VCR set already just in case.
I have a friend with MS, who, even though she doesn't like her doctor much, does not take any steps to get a western blot. She says he had one done, didn't know where, and because of her lesions is sure she has MS. Sigh
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
The show will be later in February. Still waiting for a definitive date and will notify immediately when I know.
Thank you for all the support and encouragement. It is amazing how close minded people can be. That is why we have seen 16 doctors to get this far with treatment....neuros will not validate this in any form.
I tried to talk that up as much as possible and they asked us what we would say to another MS patient who knows nothing about the antibiotic possibility...so really, I believe they really are doing the right story.
Sonja, I'll hold on the ms/lyme links for now. I've got too much on my plate and need to get my blog story done to post everywhere I can.
I would be interested down the road. At least the Lyme/MS'ers are on the right path. MS refugee's.....hmmmm (I'm being nice here)
Cathy, so very nice to hear your viewpoint of wishing anyone would have clued you in......I felt the same way, after we spent so much time trying to figure it out...
I even told my first neuro to his face...anyone coming into your clinic with symptoms like me...needs a lumbar puncture and major blood tests to determine the path of treatment...
..he just smiled and said I should go back on my Betaseron.....
The medical Mystery series does start tonight, but it is about Primordial Dwarves.....I'm telling people I wasn't interviewed for that, but maybe my 11 month old daughter's interview will be used for that spot......hehehe
No, she is a sweetie. Thank you all again for your support. I'll be in touch with any updates that come up.
Take Care, 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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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Karl, thank you.
Looking forward to it when it does air, Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Karl,
I am also looking forward to seeing your story, I don't get ABC, but I am hoping maybe another station will pick it up.
So sorry for all you have been through, but I am glad you are getting better.
Posts: 6638 | From Michigan | Registered: Jun 2001
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thanks much, Karl.
I hope they give you plenty of notice. I'd like to post about the show on 3 other support forums, and to my interested friends and family, and it takes a little time for the word to get passed around.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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I emailed everyone in my address book about the Special and many have thanked me (some of which are dealing with MS and Parkinsons diagnosis')
Please keep us posted so can email all of them the new time.
Thanks!
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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I saved my links and don't blame you for not wanting them Right Now! My brain is so foggy, I haven't been able to study them myself
My neuro doesn't even want to consider Lyme, but I never started MS drugs and didn't have an LP, either. He probably thinks of me as his granola patient and wonders, why he hasn't seen me in 4 months.
I have to give him credit, he is a gentle and caring person, I like him, but I still want to get rid of this disease and Rebif won't do it for sure!!
Keep us posted and take care of yourself,
Sonja
Posts: 35 | From Arizona | Registered: Dec 2006
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posted
Hi all, Thanks for the ongoing enthusiasm. I will certainly let everyone know ASAP! I feel it will be very decisive for many people.
We watched the first part of the Medical Mystery series last night (Primordial Dwarves and a stroke patient)(which was supposed to be the Lyme spot) and I was quite impressed in how they have it put together.
Sonja, I decided long ago to only use the first Neuro and he would only be for MRI's. (even though we are still considering finding a more qualified neuro for that)(doctor 19, I presume?)
Literally, I only see the neuro for MRI's and I see my Lyme Doc for everything else (prescribing)
Then, ultimately, we are our own doctors and work with this site (recently) and the good people of www.cpnhelp.org were the ones who helped us down this road and throughout.
All the best! 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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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
up, to keep fresh in our lyme minds
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Keeping this up.....cause I DON'T want to miss this show!!
We have the same IV company and DR (love him) ...so glad you are getting the word out...I look forward to the show and appreciate you getting the word out!!!
Blessings, Kim
-------------------- We are spiritual beings on a human journey...
It's amazing to hear so many people spreading the word. I am positive, but also hope there are no further delays or cancellation. I will be in touch the moment I hear an airing update.
Kim, your note is certainly coincidental. I notified the IV company about the show the first time around and they were all over it and spread the word.
I had a call from the supervisor today asking for a confirmation and she told me they were letting everyone know.
I'm curious, though, how you know we had/have the same IV company? Merely curious, no issues,
I just like to hear how small the world really is, sometimes. (My IV was Aug 26-Nov 28)(glad to have it gone even though it was my savior and turned me onto the road of better health.
I am interested in getting into the Lyme Artist site soon..just too much on the plate for now.
Talk soon, All the Best, 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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