[ 17. November 2008, 08:32 PM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
bettyg
Unregistered
posted
KAM, GOOD FIND! many replies on there; i just added mine even though i couldn't watch it or even read entire story.
i did ask them to put the link in several places on their site on tv program they aired for those of us not living in Boston area...
IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Good idea. I saw part of the report. A lady dx and treated for MS talked. She then found out she really had lyme disease and discussed the difficulty with getting the doctor's help.
Pam W was on.
Got the info from tbid (cathy's caring bridge web site.)
Hoping they will have the full report to watch.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Kam,
When you say you saw part of the report, does that mean the connection didn't work all the way or some other issue?
I don't know if it will help, but we've also added a quicktime connection as well as the windows for those that prefer one over the other.
Thanks for the links regarding on where we can write to give our feedback. We need these lyme segments to know that we appreciate them trying to bring awareness in a positive manner for us to this disease.
Cathy P.S. (Kam, I know I owe email and will try to get to it tomorrow). Kind of fell behind today after a rough night.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
bettyg
Unregistered
posted
cathy,
your site didn't work at all; showed page did not exist, and i have hi speed internet ... fyi only
IP: Logged |
posted
Thanks for posting...where can I watch the actual show? Is it online?
Thanks!
Posts: 43 | From NY | Registered: Oct 2008
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Cathy,
Take care of you. Enjoy hearing from you but no problem hearing from you when you are able.
When I watched the news story I was cut off. Thought, it was just going to buffer some more.
but, it did not not.
Will go back today later and try again. What I saw was very good.
JKM...we are working at trying to get the URL from the web site.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
kam-thank you.
that link is the first that worked for me. i saw 20 min or so before it didn't work anymore. it was wierd tho-kept re-buffering and took almost an hour to see the 20 min worth
this show to me is HUGE...
in someways even more helpful than under our skin
both are wonderful-finally-we've waited for so long for something of this quality to get the word out
i think they are each better - well more helpful for different audiences
under our skin is great for the masses-the uneducated-oblivious of lyme masses
this chronicle video---i think, could be really helpful if shown to the science minded- docs who only know the idsa side, and others in positions of power to help us: politicians, "oprahs", grass roots advocate.
there are so many facts in this...coming from respected voices...
it would be great to get a better video some how-one where you push the button and it just plays thru--but i am so happy to have seen this much
thank you for the time you took to post it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
sorry, it was requested that the video site be removed as it was not from the news channel and a private video.
I posted a request on the Tell Your Story site on the news channel asking for the URL of the story or if it is not on the site that they please post it.
perhaps if others do also it would help.
I too was only able to see about 20 min of it..I got to the part where Pam W is speaking at what looks like a book signing.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
sorry, it was requested that the video site be removed as it was not from the news channel and a private video.
I posted a request on the Tell Your Story site on the news channel asking for the URL of the story or if it is not on the site that they please post it.
perhaps if others do also it would help.
I too was only able to see about 20 min of it..I got to the part where Pam W is speaking at what looks like a book signing.
A man who has been dealing with lyme for half a century was mentioned as being the next story.
Would be interested in seeing that also.
Sam Donta, MD said that so many hear we don't know what you have but you don't have lyme.
I heard that so many times. So true.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
OMG it is a shame you had to remove the video....I hope they can post a link ONLINE ASAP so everybody could watch it. Please let us know when this video is online on their web site...hugs!
Posts: 983 | From The sky | Registered: Feb 2005
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm feeling terribly guilty.
It was on our personal web site and not the link to any archive of the station.
My husband had tivo'ed it and put it out on his site but it seems to have gotten hit by a lot more than he thought would since I didn't post it here. Only gave it to some.
That's also why it is slow...is because it it's bombarded for a private site.
Will see if we can get it up with a more workable option. Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Can someone please post it on YouTube?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Foggy,
After talking to my husband, since it was his taping and his web site, we have decided the message is too important to not have as many people see it as possible.
If someone knows how to put it on YouTube... go for it.
If it's running slowly when you try, try another time since it's getting hit pretty hard lately since I understand the link has gone through channels I didn't even know existed.
I'll start a new post so if we are asked to take it down, I will be able to dump the entire thread. But for now...full speed ahead.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I watched it last night. Thank you for posting it on your site.
I spoke with my primary care today and she does refer some patients to Dr. Donta. She is trying to see if she can get me in to see him ASAP.
Posts: 24 | From Boston | Registered: Nov 2008
| IP: Logged |
posted
I watched this program, (taped it) because I live in the same area. We are epidemic here... Was good to actually hear Dr. J, I didn't realize he's 79! I hope my son gets to see him, I feel he's probably his only hope right now.
I was told by pedi neuro in Boston that visual hallucinations (my 6 yr old has been having them) is "unheard of" with lyme. Lo and behold, one of the little girls with lyme was having visual hallucinations too!
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
There are others on this board that also have visual hallucinations.
I know one person has a service dog that helps her know if what she is seeing is true or not.
Pretty Cool. Not the hallucinations but the help from the dog.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
bettyg
Unregistered
posted
dr. jones turned 80 this year ... nice piece of him!
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic