Topic: Excellent video on Lyme Controversy- from ABC News in Virginia
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
EDIT!!!
I said Fox news did this report. I messed up! It is ABC News! My appologies to all!
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Below is a link to an excellent ABC news report on Lyme disease from MY old stomping grounds... Lynchburg, Virginia (TV station WSET).
Rah rah rah Lynchburg, I love you!
It is a three part series, The Lyme Disease Controversy- on video.
And note the information they still have on their website on Lyme disease- and the other interviews where the reporter is questioned.
Great job!
A big thanks to ABC News and the reporter, Noreen Turyn. Bless her heart... I surely hope she feels better soon. And thanks to her folks and her sister for making her go to a LLMD!!!
You might want to take a minute to drop the station and Noreen a note of thanks!
It's a rare day when we get this type of well researched coverage... and a reporter who tells it like it is!
-------------------- 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
I may be wrong but i see ABC did this story...not FOX...anyhow maybe if we all send this to their local ABC station it might get out and more sick people would see it...just a thought...thanks so much for it.. i sent it to my ABC station and all my family
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks TC. I'll send this to my fibromyalgia group. I sent the station an e-mail to thank them. I'm so happy to see some are stepping up to the plate and making this public.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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-------------------- pingpong Posts: 361 | From At the Pingpong Tournament | Registered: Oct 2007
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bettyg
Unregistered
posted
here's what I wrote and I just heard back from Noreen personally!!
Michelle Spruce/staff did a wonderful 3-part series on CHRONIC LYME DISEASE!
I was bitten by a tick Christmas 1969 from a tick that fell OFF my folk's LIVE xmas tree! I never saw the tick; it wasn't embedded; nor did I have a bulls-eye rash!
How do I know this? I've kept a journal diary since age 13, and have noted illnesses and what my symptoms were.
So I was able to back up and reread my journal when I got so sick and went to dr. He diagnosed me with mononucleosis/now called Epstein Barr virus. I was confined to bed for 2 weeks; so fatigued couldn't do a thing!
Now fast forward; I was MISDIAGNOSED 34 YEARS by 40-50 doctors/specialists since 1970 !! I was finally correctly diagnosed July 2004 by my primary dr. of 28 years.
I was showing all the symptoms of early-onset Alzheimer's disease, and I knew them well as my sis-in-law, died at age 40 of this mindrobbing disease!
I talked my primary dr. to have my blood drawn and sent to Igenex labs in California. Both my western blot igm and igg MET CDC standards of being POSITIVE! My dr. diagnosed me CLINICALLY since he'd been thru all the symptoms/illnesses with me!
Iowa does NOT have any full-time LLMDs, lyme literate mds; so I had to got out of state for treatment. I went to southern Minn. so southern Missouri was a 10 hr. drive 1-way vs. 4.5 to 5 hr. trip to Minn.
NO, IT WASN'T MAYO CLINIC! However, after my positive western blot igm/igg blood tests from Igenex, Calif; our local clinic took my blood for SAME test done at Mayo Clinic, Minn. Both came back NEGATIVE as they tested only 2 of 16 and 5 of 16 protein bands! Igenex tests all 16 bands for BOTH tests!
This appt. with llmd was 3 hours long and she used every minute getting a detailed history from me, complete body exam, and lots of blood to be sent nationwide to many different labs!
I went to this llmd 3 times that year. She "opted out of medicare" which I wasn't able to file any of my lyme treatment bills with. Therefore, since medicare did NOT deny me with a formal paper; I could NOT forward my bills to Iowa's bcbs health insurance office!
It took bcbs 18 months to finally tell me this vs. the monthly hassles with them on trying to be reimbursed for $4,000 OUT OF POCKET expenses; plus $1,000 for travel expenses: gas, food, and lodging.
I also involved Iowa's Insurance Commission's Regulation Bureau attorney; took him 9 months to work directly with bcbs where they told him FINALLY the opted out of medicare form denied me filing my charges with bcbs.
It was very frustrating working with Iowa's bcbs office as I was lied to over and over; I even talked to one of their VPs for 5 months trying to resolve things with NO success!
Your articles involved 3 ILADS chronic lyme drs. was great! Nice of them to explain part of the controversy going on.
OUTSTANDING LINKS shown on your web site! I clicked on each to verify I'd seen them before myself.
1 more link I'd like to recommend is this one from Yankee Magazine on the very detailed lyme report from a lyme patient discussing even more of the controversy.
I highly recommend you print the 33 pages off and read this July 2007 article written by Edie Clark in Yankee Magazine, Trouble in Paradise.
Again, KUDOS to all for helping to educate the public and with your links; they can find help for themselves/family/friends! Please have a followup sometime.
Glad you covered Attorney General's antitrust suit against the IDSA.
Next time cover also the 2 lyme disease bills in congress, S 1708 and H 741, which allow for lyme research and funding desparately needed!
Betty G, Iowa lyme activist
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Noreen, thanks for the nice reply back, and sorry I got you screwed up with other woman! lyme does that to our brains you know; I just hate the SHORT-TERM stuff!
Are you a member of www.lymenet.org ? I've been sending out my newbie package for last 1.5 years and also help newbies/oldies find LLMDS in their states.
If you join, I'll send you my newbie package, and you may find other helpful info to have and more links to put on the site!
Thank you for a JOB WELL DONE NOREEN! xox
you've got to view this 3.5 minute video by this teenager, Victoria Wilcox, and her friends. Forgot what state you are in, but they are organizing a lyme walk in NYC!
posted 31-01-2008 05:51 PM
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Hello all, I made a lyme video with some of my friends that have lyme as well.
posted
Hi, Betty... why don't you email me at [email protected] so I may help you better? And someone above is correct in that we are an ABC affiliate. No worries. Noreen
Posts: 10 | From Lynchburg, VA | Registered: Aug 2007
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posted
I have a friend in Lynchburg who is surprisingly well informed about lyme, probably got educated by this program or people who saw it.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Madge- You were right!
It IS an ABC report. I am glad you caught it! Thanks!
I feel like a cracker barrel now!! Oh well???
In Florida, Fox is channel 13! In my excitment over the video I missed the fact that this was ABC. I've always been terrible with numbers!
Keep in mind too that Fox had been the one.. and the ONLY one for years who has done any reports on Lyme and also the best reports on Lyme.
Sooooooo.. seeing how great this was.. I also assumed it was Fox for that reason.
I am thrilled that ABC has considered Lyme to be an issue worth reporting on.. and thank the reporter for the excellent job!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And hey to all,
Yes, good stuff!!!
Glad you can share it! Please do.
Lou..
The lady in the beginning of the video has been very active helping folks with Lyme in that area... for years.
I've been to the farmers market several times to try to find her.. but each time she wasn't there... and I didn't get the pleasure.
But I know from talking to folks in that section of VA that she has been active... as a lot of people know a good deal... and it sure didn't come from the health dept!
I've watched it three times so far.. and I keep LOOKING for something to be wrong with it. And I can't find anything I would change.. and you know how perrrrr...sinckidy I am about that kind of stuff.
Hope everyone is ok from the storms! I was offline due to tornado watches all day and night... but they missed me again!
posted
I saw a near final draft of the whole documentary, Under My Skin. It's just fantastic. It's produced by open eye pictures which has a web site openeyepictures.com
Many Many patient stories, LLMDs speak about the disease and the controversy......what has to be done to further research....etc.
tons of info
For example, a researcher in Ct. has found Lyme bacteria in a high percentage of Alzheimer Patient's brains (live patients can't be tested in this manner)...but research is ongoing, which is heartening.
They are hoping to submit a cut to Sundance in Sept. and premiere the finished film in Jan. 09
It's great that it's already gaining attention!!!
Fantastic News Series in VA!!
[ 20. February 2008, 12:48 AM: Message edited by: lymewarrior03 ]
Posts: 661 | From NY | Registered: May 2003
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