They just interviewed an "expert" from the CDC and he said that standard treatment is 14 to 28 days. SOME may need another course of 28 days. That's it! GRRRR!!!!
Dr Stark actually mentioned STARI as one of the TBD's.
All in all, the information was inadequate. The dr with the CDC mentioned other symptoms you could get if it wasn't treated immediately, but nothing was said about neuro-Lyme symptoms.
Posted by TadichGrill (Member # 19679) on :
It makes me want to pull my hair out. Crazy making for all of us.
Posted by MaryMi (Member # 459) on :
They did mention Lyme was "controversial"...but did not say why. I think they should include both sides, not just the CDC's. One Doc said some are being treated that don't even have Lyme...he said Lymes of course and some are even on abx for a year...this was said with a bit of disgust. Let them know the other side of this disease. www.http://www.thedoctorstv.com Posted by LittleLymie19 (Member # 15610) on :
When was this? I thought that they were considering airing some of "Under Our Skin"?
Posted by Lymetoo (Member # 743) on :
Yes, they really should have given both sides. And I did hear the "Lymes" comment....ugh!!!!!!
This was today, littlelymie.
The show was about things that cause pain. They said Lyme can cause nerve pain.
Posted by Amy C (Member # 19297) on :
It was just on today. You could probably see it on their website or maybe your local tv stations website?
I agree with Mary! They should have given both sides. Then the CDC guys says 2 months for lyme that's caught late!
Then the dr saying people are getting treated if they don't have it. All in all I was very disappointed!!
Posted by bettyg (Member # 6147) on :
was this ADVERTISED? i would have watched it had i known!! Posted by Lymetoo (Member # 743) on :
up
Posted by Need Lots of Help (Member # 18603) on :
I would have watched it too.....
Jez, I even wrote to them telling them how poor the testing is, how inadequate the treatment is, and how there are not enough physicians educated...
UUUGGGGHHHHHHHHHHH!!!!!!
Shalome
Posted by LymieLaura (Member # 19367) on :
It made me sick to watch this. It was all of 5 minutes and it was the usual brush off. I wrote them so many letters on this BEGGING them to tell both sides of the story and shockingly.. they didn't. PS - did anyone notice that the way Dr. Stork pronounced Borgderferi was wrong? Idiots!
Posted by Hoosiers51 (Member # 15759) on :
This show is strictly for entertainment....I'm sure they would have never put anything on it that could actually scare anyone. Sigh. The producers probably care too much about the "feel good" factor of the info they present.
The one doctor was on the Bachelor for crying out loud!!!!
I'm glad those of you who tried did try, you deserve thanks for that. Too bad they didn't listen. But unfortunately it doesn't surprise me.
Would have been really GREAT exposure though, so worth a shot.
Posted by Pinelady (Member # 18524) on :
It would be great if now they had the people from Under Our Skin telling the other side.
Posted by bettyg (Member # 6147) on :
under our skin was supposed to be there; andy wilson was waiting for CONFIRMATION of date to tape this around 3-4 wks. ago.
amazing how this fell thru; the woman commentator on cnn....greata, etc.
and how can we forget oprah's deal where the big wigs met in NYC to discuss this!! how disappointing.
Posted by Need Lots of Help (Member # 18603) on :
I think that Big Pharma and ISDA get to them before they can share both sides and scare them.
But, I do have to remember in doctors defense, they were not told about this disease and are ignorant about it.
But, it really is getting old, knowing about lyme, living the near-death of a life with lyme and no one believe you.
Not even my best friend with lupus will get tested.
Shalome
Posted by Lymetoo (Member # 743) on :
The show was about pain, not Lyme. So Under Our Skin wouldn't have been there, I'm sure.
I THOUGHT he mispronounced burgdorferi!!! I thought maybe *I* was saying it wrong all these years!!!
Posted by LittleLymie19 (Member # 15610) on :
Let's not give up hope. Maybe there's still a show in the works involving Under Our Skin. I'm still going to hold my hopes high since we haven't necessarily heard otherwise yet.
Posted by Lymetoo (Member # 743) on :
I think there is still a show in the works, but it looks like we need to do some work on this if this is any indication of what they will do!
Posted by Blayer (Member # 20040) on :
The show may given miss information or inadequate information but it did raise awareness about the disease.
That is how I found this site. I never even considered Lyme until I saw that episode yesterday and now I'm convinced that this has been my problem for 15 years...and I'm excited at the prospect of getting some answers.
I am also excited to think that maybe I don't have the autoimmune disease scleroderma.
Has there ever been anything on Mystery Diagnosis about Lyme?
Posted by tpap1006 (Member # 19634) on :
Blayer, yes, there was something on mystery diagnosis severla years ago, it involved a teenaged girl who was made better w/ IV, ABX and supplements.
It was, maybe 2004?
Trace
Posted by John S (Member # 19756) on :
I was denied a second 28 days, even though the first perscription was only 21 days.
Go home the symptoms will resolve. My as*!
Posted by tpap1006 (Member # 19634) on :
I was initially given 12 friggin days of doxy and amox., after a few days I felt like my old self. Then another round of 12 days of erythimicin. several yrs of taking friends antibiotics for releif here and ther.
here I am 6 yrs later . . . .
the girl on mystery diagnosis was practically on her death bed after being treated for soooo many other things for some time.
It was a nice to see the young girl regain her life. . . .envious. Trace
Posted by Tiramisu (Member # 15082) on :
I knew the "Doctor's" didn't have the right stuff to take on a controversial issue. They always refer to the "official rules" of everything.
I saw where Dr. Lisa disagreed with an endocrinologist on the dx of a woman because this patient was under age 40. I think she was about 36-37 yrs old. I forget what the debated condition was, though.
Point is, they are not willing to look outside the box.
Mystery Diagnosis -- there were 2 Lyme shows that I know of. "Deadly Sore Throat" and "The Stabbing Sensation"
In case anyone wanted to know... :-)
Posted by Lymetoo (Member # 743) on :
That's great, Blayer... that something they said made you think Lyme. What was it that made you decide that?
You could have scleroderma and Lyme.. but I sincerely hope NOT!
Go here for more info .. "Wild Condor" is one of the people who was on Mystery Diagnosis.
Hello everyone, I couldn't find how to start a thread about myself. I think I have Lyme, but I'm sure my grandchld does because I isolated and identified the borrellia burgdorferi from her stool under my microscope. That as well as a few other co-pathogens.
Does anyone know why they don't utilize the obvious physical organisms by matching them as I have done? If nothing else, it could be a contributor to the testing process.
sincerely, Kritters
Posted by 'Kete-tracker (Member # 17189) on :
Lymetoo, Where do you watch (listen to?) "The Doctors"? Is this a cable show? A regular radio broadcast?
Was this "expert" refering to treatment of early-stage Lyme"? Did he even SAY?
Most everyone I know in this area dealing w/ disseminated Lyme is dealing Mostly with Neuro issues!
Posted by tpap1006 (Member # 19634) on :
"The Doctors" is on mon-fri. on CBS at 10am est. and on at 2:00pm est. on NBC.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by 'Kete-tracker:
Was this "expert" refering to treatment of early-stage Lyme"? Did he even SAY?
Didn't really say. I'm sure he was talking about early since they don't recognize late stage!
They mentioned nothing about neuro symptoms. The guy from the CDC is the one who went over the symptoms.
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The one doctor was on the Bachelor for crying out loud!!!!