posted
Hi all -- I participated in a Lyme TV talk show last summer with three others through our public access TV station, Access San Francisco/Cable Channel 29(www.accessf.org, "The Mark Hunter show"). It just got posted online, with special assistance from Jay/Groovy!
posted
That is very cool. I think we need more of this. I wish the closing statement had focused more on better testing, treatment, and the ISDA pulling their head out of their *** , instead of 'cover up in fear' (because I know I can't), but I think overall this is great. LM
[ 13. October 2007, 06:18 PM: Message edited by: LocalMan ]
Posts: 212 | From Eastern CA | Registered: Apr 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I want to watch it*)!**)! I want to watch it*)!*
-------------------- 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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bettyg
Unregistered
posted
robin, CONGRATS FINIALLY!! LONG TIME COMING!
since i have diallup, i won't be able to watch it. just downloading the 7-10 minute NEWS BROADCASTS, takes my pc 90 minutes! can you imagine 60 minutes take 6-7 HOURS???
hope you get rave reviews!
JAY YOU LIVE UP TO YOUR REPUTATION, YOU ARE "GROOVY"!!!
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posted
Betty -- I too have dial-up still - lol. It offers a special effect. You know about how models posing for drawing are supposed to change their position every couple minutes? Well, a dial-up does this for us every couple seconds -- a slight position change, a new facial expression...Here's hoping you can find a normal place to go watch!
Posts: 13116 | From San Francisco | Registered: May 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Oh Hooray!
I can't wait to watch!
Congrats Ms. 123 and all involved!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Really thought it was well done! You were all excellent. It also was great to hear from Ari--think it means a lot to other young people going through similar situations to hear from one so articulate.
The only thing that puzzled me was how the term "Lymes" was used by the panelist in red, who sounded so well informed. Please don't take this as a criticism. It is just that, whenever I hear anyone refer to "lymes" I kind of automatically discount whatever they say, or just figure they are really new to lyme.
But I thought you all really got much great information across in a relatively short amount of time.
Congratulations, and thank you!
Ann
Ann
Posts: 287 | From Northern California, USA | Registered: Oct 2000
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bettyg
Unregistered
posted
robin,
please post about this in activism too since this will get bumped off 1st screen quickly11
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I just finished watching this program. Good job Robin and thanks for sharing it with us. There was some great information that came out of this.
I agree with Ann in that I had trouble with the woman that kept calling it "lymes" since she did seem to be very well informed, other than how the disease is pronounced.
And it was good having the younger generation represented as well since it showed people that it hits anyone.
Robin, you had some papers that it seemed you had wanted to share before they ran out of time. Just out of curiousity, what were they? You did a great job Robin and I'm so glad you were able to help get the word out there. What network did this run on out in San Francisco?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Robin, I think both you and Kathleen came across very very well on the piece. The ending could have been something other than "Be afraid" but overall, I enjoed watching it.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Thanks for watching, all! Comments much appreciated! It meant a lot to us to be able to do the program.
A little more about participants: Kathleen got her county(San Mateo) to declare Lyme disease awareness month in May. And Elize knows an awful lot about detoxing and alternative treatments.
Cathy, the papers were covers of a couple brochures -- one showing California's almost total-county Lyme disease spread, and the other showing the different tick sizes on a finger.
I like to show the covers of those two brochures to people not acquainted with the issue -- kinda gets the point across real quick. Mark had told me they could do a close-up if I held them up.
But since we were close to time, I decided to talk about prevention in the remaining couple minutes.
Posts: 13116 | From San Francisco | Registered: May 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Good for you Robin123 you have gone to 456
The boy that spoke after you said he cant sleep tell him if you have the ability to try melatonin half hr before bed time bed with no light in the room also magnesium.Those really helped me.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Up for any weekend viewing...I checked the site tonight -- viewed 171 times in only one week online!
What I'm wondering is whether any of you have community TV station programming and could do something similar to let your community know more about its Lyme/co's situation.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
This is wonderful -- thanks for providing the link.
Also for the boy who can't sleep: I have tried evvvvvvverything for sleep and have had terrible sleep problems.
Finally, after all sorts of meds, herbs, and various conventional and natural treatments, I found something that helped me.
I do 10,000 mcg intramuscular injections of methylcobalamin (a form of b-12 -- others won't work) along with melatonin nightly, and this actually helps me sleep.
In studies, this combination (at lower doses actually -- but this dose works for me) has sometimes helped with circadian rhythm disorders.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Popcorn, lights...for any more weekend viewing...
Posts: 13116 | From San Francisco | Registered: May 2006
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daise
Unregistered
posted
Hi Robin123,
Because you just posted again on a thread that's over 2 weeks old, I became aware of what you four wonderful people did!
Thank you.
Wow!
I sat stunned in front of my computer watching the broadcast. I've never seen anything like it.
I imagined what could happen here, if I could show this to the people at the local station? Could they "run" it here, or, could it be a model for--an example of--a new broadcast?
I'm still stunned, writing this.
I liked the ending. Sometimes in life it takes a tough love approach to get the point across. It was very powerful. For those who saw it, it has the potential to leave a "mark" that if they get weird signs and symptoms, and they know it's not the flu, it may be Lyme.
Just think of the potential for people being able to get early Lyme treated--preventing a fall into the twilight zone. And the potential for people to realize that Lyme could actually be what they suffer badly from?
I was astounded at Kathleen's strength for her children.
Ari's a gem of a young man. Of course he's going to get better. Mom believes this!
Alize's mastery over adversity was clear.
And your approach at getting people's attention and why it is that everyone must be aware of it. And what viewers need to watch out for: the practical, "take home" stuff.
Together, the four of you had important things to tell the viewers, and you certainly "came off" as being informed. In other words, you were all believable. (Well, to someone else with Lyme, yes ... Rather, you didn't have anything to sell. You had love in your hearts to give--and a powerful message.)
Who could watch that and not feel changed? Who could watch that and not wonder: Well, why isn't this on 20/20? Why isn't it in the news-- a lot? And why are some doctors being punished for trying to help people?
What day and time did it air, originally? In other words, how many people does the station estimate, saw it?
posted
Robin gottheir approval to air it on Jay got it on google video. ****************
see robin's note below with CORRECT INFO! so it may get more hits there than ever imaginned if folks send this link to family, friends, lyme group lists, etc.
i'm sure robin will answer to you.
i still hope to see it when i visit with anyone with HIGH SPEED INTERNET; i have dialup a NO NO for 60 mintes of viewing would take 10=16 hrs. to downloaad.
robin, i'll have to check that out...internet cafes! never been to one! uffda
posted
This is great - came across really well - we need alot more shows like this one. Well done!
Not sure about the "be afraid" ending though!
Also, just to point out - the lady in red kept mentioning Europe and all the research etc there......IMO this is very misleading!!!! I'm from Ireland, and I can tell you that our situation in Europe is alot worse than in the US. Most European Lymies, including myself, have to make transatlantic flights to the US for treatment, at huge physical and financial costs, where we of course have no insurance cover! The research which has been done in Europe is not known about, and the majority of European docs think you can only get Lyme in the US anyway! There is an ILADS doc in Switz, and she hasn't taken any patients for a very long time due to capacity issues.
Elaine
Posts: 261 | From Herx-ville!! | Registered: Aug 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
robin,
Thank you for your timing. I had been trying to find this post and couldn't.
So, glad you uncovered it.
I was just amazed that you all held it together when you were talking and able to sit upright to boot.
There was a quote from Steele that I would like to post here but need to rest and then try to watch the video again and get the quote.
It is what stood out for me.
Also wondering where the stats came from on failure or success rate...again can't recall the words.
[ 05. November 2007, 02:54 PM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
Unregistered
posted
i edited my earlier comments.
robin, i'll try to find an internet cafe; never heard of them!
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posted
Elaine, I think these European studies do exist, much as a lot of good US studies exist that the IDSA doesn't want to pay any attention to.
Are you in Ireland now? Did you get lymed in Ireland? Do you hear much about people having Lyme/co's there? I hear you about the lack of proper care -- it shouldn't be that way.
Kam, thx -- we didn't have any bed options in the studio! Yeah, Kathleen did a great job. Don't know what failure/success comment you're referring to...
Betty -- different culture here -- there's an internet cafe practically on every corner, plus the city is going to try to pass legislation for free WiFi tommorrow. We're wired here, and with cafe lattes to boot...
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Up for any new folks who might want to watch. I just checked -- it's got over a 1000 viewings now -- must have gone on some other sites!
Posts: 13116 | From San Francisco | Registered: May 2006
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