daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Tonight (Friday) on www.WJLA.com ,they will air another short health segment...this time on Lyme testing. The reporter said that this segment will just be scratching the surface and will focus mostly on the Elisa and the Western Blot.
There may be other shows which will deal with different tests or aspects. She said that there will be nothing here that will be earth shaking to the lyme population but the purpose is to try and educate the public. It was expressed that it is very difficult to cover too much on these nightly news segments....so one aspect at a time. It will be on the news at 5:00...probably more like 5:40.
Posts: 1176 | Registered: Oct 2002
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merrygirl
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posted
I am so glad that this station has been so responsive to the situation. I even got an email back from the reporter.
Good job!
Hopefully they will give a good idea that ELISA testing isn't good.
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lymednva
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posted
I was told earlier this week that the reporter herself has had Lyme, so she my guess is that is why she is motivated to work so hard on this story.
I'll be watching for it tonight.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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daystar1952
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
For having to show both sides... I thought this was an excellent segment and we must keep the letters and encouragement going. Believe it or not 1 minute is the average health segment. The first Lyme show was 3 minutes and this one was 3 and a half minutes. The reporter personaly knows people with lyme disease which is why she has an interest. It's getting to the point where just about everyone knows someone with lyme ...or has had it themselves.
Why are we not hearing the truth about this basically treatable disease when other so called autoimmune diseases , cancer, diabetes...etc are all allowed creedence and basically are also allowed expensive treatment? I say it's because lyme and other coinfections are at least the partial cause of these "conditions" and if the main cause is identified then there would be pressure to treat the cause....which then would result in less profits for the drug companies.
The pharmaceutical companies do not want the root causes of disease known!
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merrygirl
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posted
Did you hear that jerk from John's Hopkins saying the test is 98% accurate in late cases? Even CDC admitted that their criteria probably excluded 10 people for every one that was positive.
Besides, who wants to wait for LATE disease to be confirmed positive? I had positive CDC-standard test at 3 months after symptoms, 2 "standard" treatment regimens, and a POSITIVE CDC test last fall, 2 1/2 years after supposedly proper treatment.
Posts: 131 | From PA | Registered: Aug 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
send the station emails of support for more segments:
posted
That jerk doctor from Hopkins is actually going to be at the October Lyme conference. He's going to debate the existence of chronic Lyme, I think with Dr. B (though not sure).
I would looooove to see and hear that. Should be fascinating.
I saw that very same jerk doctor on "Mystery Diagnosis" too. He diagnosed this guy with hemachromatosis (which was the correct dx, by the way), and the very next segment was about a guy who turned out to have... guess what? Lyme. But this doc was not involved in that segment.
The universe is strange.
Posts: 194 | Registered: Jul 2005
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quote:Originally posted by billclo: Did you hear that jerk from John's Hopkins saying the test is 98% accurate in late cases?
I notice he carefully said 'late'.
Here is a snip from something some other guy with a similar name wrote in 2004. Must have been his evil twin? *she says with tongue firmly planted in cheek* Here is the link.
quote:After entry, B. burgdorferi activates local inflammation, yet evades host defences and facilitates dissemination by potentially masquerading with host components such as plasmin and complement.
The extent of tissue injury is determined by the aggressiveness of host inflammation and immunological reactions, as well as by genetic attributes of the spirochaete.
The clinical presentation can be highly varied, including early manifestations that are limited to erythema migrans and ranging to disseminated infection with arthritis, carditis, cranial nerve palsy, peripheral neuropathy, meningitis, or other manifestations.
Diagnostic tests have improved, but are unhelpful during certain stages of infection.
Which stage is that you ask? Why... any other stage other than the one you happen to be in (if you were to actually had Lyme that is).
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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bettyg
Unregistered
posted
quote:ABC 7 Medical: Lyme Disease, Part 2
posted 5:50 pm Fri September 28, 2007 - tags: medical * fowler * lyme disease-WJLA Script-
Anchor: TONIGHT A MAJOR MEDICAL DEBATE ABOUT HOW DOCTORS TEST FOR LYME DISEASE.
related stories:
ABC 7 Medical: Lyme Disease CRITICS SAY THOUSANDS OF PEOPLE ARE SUFFERING FROM CHRONIC DEBILITATING SYMPTOMS BECAUSE INACCURATE TESTS ARE MISSING HALF OF LYME DISEASE CASES AND THOSE PEOPLE AREN'T GETTING TREATMENT.
ABC-7 NEWS MEDICAL REPORTER KATHY FOWLER CONTINUES OUR INVESTIGATION INTO THE GREAT LYME DEBATE.
Kathy Fowler: THE TESTS FOR LYME DISEASE WERE DEVELOPED MORE THAN A DECADE AGO. THEY WERE CONTROVERSIAL BACK THEN. AND IN ALL THIS TIME, NO BETTER TESTS HAVE BEEN APPROVED, EVEN THOUGH ALMOST EVERYONE AGREES THERE ARE PROBLEMS WITH THE CURRENT TESTS.
Story: 6 YEARS AGO TRACEY WEBB HAD SUCH FATIGUE AND JOINT PAIN, SHE SAYS SHE COULDN'T EVEN PICK UP THIS WATERING CAN.
SHE SUFFERED FROM OTHER DEBILITATING SYMPTOMS LIKE TREMORS, TINGLING SENSATIONS AND MOOD SWINGS.
Tracey Webb: "I asked them to test me for lyme disease."
DOCTORS ENDED UP TESTING HER 3 DIFFERENT TIMES FOR LYME DISEASE... EVERY ONE CAME BACK NEGATIVE.
Tracey Webb: "Everything kept pointing back to Lyme Disease, every symptom that I had was on a Lyme Disease check list even though the test kept saying now you don't have this disease."
TRACEY REALIZED SHE WASN'T ALONE. SHE REPEATEDLY READ THE SAME STORY ON LYME WEBSITES, PEOPLE SUFFERING FROM SYMPTOMS LIKE HERS WITH NO TEST CONFIRMING A LYME DIAGNOSIS.
SHE WENT TO RECOMMENDED LYME SPECIALIST. HE SENT HER BLOOD WORK TO A LAB THAT SPECIALIZES IN LYME TESTING. "THIS" TEST CAME BACK POSITIVE.
Tracey Webb: "I felt relief that I finally found out what I had."
OFFICIALLY HERS IS A DIAGNOSIS THE CENTER'S FOR DISEASE CONTROL WON'T EVEN RECOGNIZE. THE GOVERNMENT IS CRITICAL OF CERTAIN LABS LIKE THE ONE TRACEY USED, CLAIMING THEY AREN'T VALIDATED TESTS. JOHNS HOPKINS LYME EXPERT, DR. PAUL AUEWAERTER SAYS THOSE LABS GET TOO MANY "FALSE" POSITIVES.
Dr. Paul Auwaerter: "In fact the government issued a warning 2 years ago to be leery of tests where they are not using FDA approved methodology because there's a concern of over diagnosis of Lyme disease."
THE CDC RECOMMENDS TWO SEPARATE FDA APPROVED TESTS, BOTH NEED TO BE POSITIVE BEFORE A PATIENT IS DIAGNOSED WITH LYME DISEASE. BUT DOCTORS SAY NEITHER TEST IS FOOLPROOF, ESPECIALLY IN THE EARLY STAGES OF LYME DISEASE.
SO PATIENTS LIKE TRACEY ARE LEFT TO DECIDE WHICH DOCTORS AND TESTS TO TRUST.
Kathy question: "you went with your gut?
Tracey Webb: "It was absolutely my gut I just felt in my heart I had this"
DR. NORTON FISHMAN FEELS THE CDC RECOMMENDED TESTING IS NOT sensitive ENOUGH. HE DOESN'T RELY ON ANY ONE TEST. HE SPENDS HOURS GETTING A DETAILED MEDICAL HISTORY, THEN TESTS FOR OTHER BACTERIA ASSOCIATED WITH LYME CARRYING TICKS.
Dr. Norton Fishman: "We look at things like vitamin d, we look at the body's natural killer cell levels that are supportive of the diagnosis and we do testing for these other organisms called co-infections."
DOCTORS WHO STAND BY CDC STANDARDS ADMIT THE TESTS ARE COMPLICATED,EXPENSIVE AND "NOT" STANDARDIZED BUT STILL CLAIM THEY'RE 98% ACCURATE.
Dr. Paul Auwaerter: "For late disease I think the test are indeed very reliable to help assist in making a diagnosis."
TRACEY FOLLOWED BOTH THE TEST AND THE TREATMENT "NOT" RECOMMENDED BY THE CDC. SHE WAS ON ANTIBIOTICS FOR 2 AND A HALF YEARS, THE CDC SAYS ONLY 30 DAYS IS NECESSARY.
SCIENTIFIC ARGUMENTS DON'T MEAN MUCH TO TRACEY, ALL SHE KNOWS IS SHE WENT AGAINST THE PREVAILING MEDICAL OPINIONS AND today FEELS NEARLY CURED!
Kathy Fowler: IF YOU'D LIKE MORE INFORMATION ABOUT LYME DISEASE LOG ONTO OUR WEBSITE. IF YOU'D LIKE TO MAKE A COMMENT, EMAIL US AT [email protected].
DURING OUR NEXT STORY ON THE GREAT LYME DEBATE WE'LL TAKE YOU TO ENTIRE NEIGHBORHOODS IN MARYLAND AND VIRGINIA AFFECTED BY LYME DISEASE .
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
it would be good if we could send comments that dispute some of it.
cdc still says it's a clinical diagnosis don't they?
i'll try to find it late. cdc contradicts itself now-in the same document.
lymetoo-could you post that link in the comments?
wjla.com
i'm in bad shape but i'll try to get something on there soon.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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daystar1952
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Member # 3255
posted
Hello folks
I just went to WJLA.com and there are only 2 responses ..mine and another person's. We need to have more responses. I realize it's a weekend and everyone is busier ....but 2 responses? I don't think that will ever get us anywhere. Whether you agree or disagree we have to show them that this is a critical disability and life or death issue! Maybe some of you have emailed the reporter or her boss...and there is no way I can tell about that. So, hopefully more is going on behind the scenes than I am aware of. Hopefully even if you have critcism , that the gist of it all will be that you are grateful that they are doing this series. We don't want it to stop here.
If you need to watch the show again, watch the archive so you will remember what it is you may want to say
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lymednva
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posted
There are two ways to comment on the story. One is to post it online. Those are the ones you see.
The other way is to send an email to the station, which is what many here are doing. You will not see those, but they are reading them.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I posted a comment after the first segment (they dont allow much space)and emailed Kathy F. my complete story as well.
I received a very thoughtful and encouraging email from Kathy in return.
I will not reveale her private message but will say she has heard from many of you and your stories have deeply touched and motivated her to keep digging.
Keep sending those stories! BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
quote:Originally posted by BorreliaBrain: That jerk doctor from Hopkins is actually going to be at the October Lyme conference. He's going to debate the existence of chronic Lyme, I think with Dr. B (though not sure).
I would looooove to see and hear that. Should be fascinating.
I saw that very same jerk doctor on "Mystery Diagnosis" too. He diagnosed this guy with hemachromatosis (which was the correct dx, by the way), and the very next segment was about a guy who turned out to have... guess what? Lyme. But this doc was not involved in that segment.
The universe is strange.
I know who you are talking about! what a jerk! yes, he did diagnose the guy with hemochromatosis, but only after the guy was suffering for over a year, and could not even function anymore. he had an enlarged liver and his tests were abnormal, and he tried to tell the guy it was depression! What an incompetant idiot!
this is the dr who caused me a big delay in treatment, I went to him and my tests were positive at the time, for lyme, erlichia, and babesia, and I was telling him my fevers were going away with antibiotic but coming back after going off. i had many symptoms, and he insisted I had no infection, no inflammatory process.
i had erythema, he said it was caused by the antibiotic. i felt better on antibiotic, worse when I was off it, he said it was drug fever, but I now know drug fever is the opposite (you feel better off antibiotic) he told me the antibiotic could be having an anti-inflammatory affect, but I know now that if that were true then steroids would work, steroids made me worse.
then he said "benign hypothermia" yeah, so benign that the sweats were causing severe dehydration to the point I was getting tremors.
then he said to "ask your primary dr to put you on a low dose doxy for acne" well, if I have no infection, why would I need antibiotic?
what this guy did to me should be considered criminal, if I had gotten treated back then when I still had an immune system left, maybe I would not be in the condition I am in now.
[ 01. October 2007, 07:12 PM: Message edited by: roro ]
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