Hi, I received this yesterday from a NC Lyme organization. Everyone please read though I have since found out (from the post two below this one) that the reporter is asking for email responses only, from those living in Maryland.
Please note that the contact information in the original email was not correct so I deleted it, and directly below is the contact information.
> Subject: IDSA being investigated- we need help > > I sure could use your help right now.. if you please. > > I recently spoke with Steve Levine (a Crime and Justice Investigator for Fox > 45 News in Baltimore). > > "Steve's investigations have resulted in several national recalls, crooked > contractors being sent to jail, and hundreds of thousands of dollars returned > to ripped off consumers. His work has also led to several bills being > introduced by state lawmakers." > > He is interested in doing an investigation/ He is interested in doing an > investigation/ report about the Infectious Disease Society of America (IDSA) > and their guidelines and how they affect Lyme patients. I have provided him > with background, documents, etc.. and will continue to > > He said the first step would be to have patients call or email him if they > have been affected by IDSA guidelines in the past (lack of a diagnosis or > missed diagnosis, bad tests, improperly treated, doctor or insurance cut off or > refused treatment, etc)... and how the new IDSA guidelines will affect you and > your family.. and other patients to come along. > > If you could make a quick call to Steve and/or send an email with a short > story with your thoughts.. it may help our voices to finally be heard. May I > ask that you have all your friends/family also contact him.. and tell how they > are worried they will have problems after what you've been through.. how > ticks are a daily part of their lives.. etc. May I suggest you do not give out > your doctors name.. for obvious reasons. I will ask some LLMD's to contact him > after the LDA/ILADS conferences this weekend. > > We need to let Steve know the IDSA guidelines are, and have been, a major > problem.. and that Lyme is a BIG problem that needs investigation. He wants to > be sure it is not just me calling out of the blue. This may be our only open > door.. so please do all you can to help all of us. > > Here is the number to call to tell Steve your story: 410-467-5595 > Thank you for taking time to do this. Please forward this email to all the > folks you know (in your email address book) if you can. It IS important. Have > neighbors/fellow employees, etc contact him. Folks in Delaware and PA, VA, NC > and other areas also welcome to give their thoughts too! Please give him > your name and contact info when you reach him. > > I will let you all know if/when there will be TV coverage on the Lyme/IDSA > situation. Keep your fingers crossed!. > > Again.. Thanks so much!!! > > TC >
[ 20. October 2006, 11:05 AM: Message edited by: Serenity ]
Posted by treepatrol (Member # 4117) on :
Up!!!!!!
Posted by sometimesdilly (Member # 9982) on :
Serenity-
Mr. Levine has since requested E-MAILS only, and that they come only from those in Maryland....
Maybe it would be good to edit your post for those who don't read further on?
He's apparently swamped with calls.
Dilly
Posted by trails (Member # 1620) on :
up and is there any way we could be collecting the emails of people OUTSIDE maryland so that he can do a sentence or two about the nationwide effects?
Posted by karatelady (Member # 7854) on :
Yes, like Georgia where my insurance and the doctors here say there is no lyme.......Grrrr
Posted by sometimesdilly (Member # 9982) on :
TinCup's been suggesting that everyone write up their personal lyme experiences into a single page story-- that lots of us can send anywhere and everywhere they might be of help- but in a coordinated way.
From what I understand, Mr. Levine's interest and knowledge is much broader than a story just about Maryland lyme sufferers-- but since he is specifically asking to hear only from Marylanders for right now, it seems like a good idea to give him just that and only that.
I'm sure TinCup will weigh in on this when she's back from the conferences.
Meanwhile, have you faxed or called your representatives yet? Signed LDA's online petition? Contacted your local support groups to see if they are organizing anything about the guidelines? Etc. There's lots to do....
Dilly
Posted by Truthfinder (Member # 8512) on :
Oh, I see now.... this is an investigator for the LOCAL Baltimore, MD FOX channel.....
Well, maybe if he hits paydirt, it something that might be picked up by FOX News channel or something.....
Serenity, it might be a good idea to edit the topic heading and your initial post so that is made a little more clear to people...
Good find, by the way!
Tracy
Posted by Lymetoo (Member # 743) on :
Love it.
Posted by lymednva (Member # 9098) on :
Since I live just across the river from MD I went ahead and emailed him anyway! It doesn't hurt for him to hear from me, and who knows, it may become a bigger story.
Posted by Beverly (Member # 1271) on :
Wow, I hope this helps.
Posted by kelmo (Member # 8797) on :
Ha...I didn't get past the first post, and I went directly to the link and wrote an epistle.
I have a feeling it didn't go through, or his email inbox is full because the email just disappeared when I pushed "send". I did send a copy to my inbox, however, so if I ever need it, I'll have it.
I think I'll send it to my local newspaper.
Posted by Robin123 (Member # 9197) on :
Great to hear this reporter is picking up on the story. This is actually a national and international story, since international medical groups also follow the IDSA guidelines. I'd like to see the reporter involvement explode nationally and internationally. We can all communicate then. I suggest anyone who's contacted reporters before for stories, contact them again about doing the guidelines story.
Posted by Lymied (Member # 6704) on :
Sent mine - seemed to go through - tried to make it short and sweet and let him know he can email or call me with any questions, etc...I grew up in MD and went there seeking treatment at one point of my journey....