-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks. (I think). It's still sad that they reporters left this looking like the poor girl and her mom are nuts.
Very important for everyone to read, just in case this hits the airways tonight or others see the site. We need to prepare how we might respond to family or friends who see this.
And we need to understand how this will read to them - like the poor girl and her mom are nuts. The way it was written is so slanted and, although they did quote one LLMD, it was way out of proporotion and the CDC and IDSA quotes were never examined.
Put yourself in others' shoes as to how this "reads" - and maybe have a link or two for them for some follow-up if you feel a "grilling" coming.
Had I read this years before I became so ill, I would have thought the girl was not not the right track. Now I know that, at least, one girl from that group went the extra mile to find a good LLMD.
I also have to question as to how the reporter can say Lori is not well but the others are - when they did not talk to any of the others. Who says they are all well? And, who knows what other treatments or other doctors they've been to see?
This is clearly written to say chronic lyme does not exist. So clear to the reader that they will not even know the reporter's methods are so very wrong.
This girl and her mom are very brave, indeed, to give this matter voice. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That is so stupid I can't even finish reading it. I would be enraged if I was that girl's mother. It is what we can expect though.
How in the world could 18 kids all have a psychological disorder causing tics? What kind of idiot would believe something like that? Are people supposed to just swallow whatever they are told?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Pans Pandas Pitand Somehow, the complete press release did not make it into this news article - here it is: February 22, 2012 Press Release: LE ROY, NY TEENS: UPDATE FROM DR. TRIFILETTI Ramsey, NJ � February 22, 2012 � Rosario Trifiletti, MD issued the following statement today regarding the teens he is treating in Le Roy, NY.
National attention was drawn to the plight of the teens when they were suddenly afflicted with uncontrollable bodily movements sometimes described as tics.
�I continue to work with a PANDAS-like diagnosis. The lab work is now complete on all nine of the patients I examined on January 29, 2012 and has shown evidence of infection by either Streptococcus Pyogenes
(the common strep throat bacterium, found in five of nine patients) or Mycoplasma Pneumonia (a bacteria-like agent that is a common cause of a mild pneumonia-like illness, found in eight of nine patients).
Two patients also meet CDC diagnostic criteria for Lyme disease. They are being treated appropriately according to the infectious agents found and are responding to treatment.
In my opinion, these objective findings, which would be exceedingly unlikely to occur by chance alone, support my diagnosis of a PANDAS-like illness.
I must remain open to another possibility such as mass psychogenic illness, which can never be supported or refuted by objective findings.
However, given the clinical and laboratory data, I find a PANDAS-like illness a very likely medical diagnosis in these children.
I hope to see the teenagers again soon, but given that I am doing house calls from some two hundred miles away, it requires extraordinary planning. In the meantime, I remain in close contact with their parents.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
She has something but it's probably not just lyme. There's probably a complicated infection and maybe toxic exposures going on.
Posts: 2276 | From united states | Registered: Jun 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I read the comments to the article.
They run the gamut, from people who know nothing but are sure that they do, to others who realize what's going on.
This would all be confusing to someone new to the discussion.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
"Its clinical manifestations are extremely well known."
yeah...right. total BS
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
"Since Lyme disease has been studied with enormous care and thoroughness, the literature on Lyme first described 35 or 40 years ago now fills half a room. Its clinical manifestations are extremely well known."
The only thing being done about tick born illnesses with enormous care and thoroughness has been the denial by the infectious disease doctors and insurance companies. It has been all about $$ for them.
Posts: 472 | From New Jersey | Registered: Dec 2007
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posted
Reading a lot of comments on ABC news. Looks like my comment was removed...LOL
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Possible exposure to toxins too.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I kept looking for Julia Roberts when they said Erin Brokovich. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I just gave a bunch of up votes to the comments that tell the real facts. Hopefully that helps.
I couldn't get through the article either. Too depressing.
Posts: 2839 | From California | Registered: Jul 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
good to see you seek...you made me laugh. now a days thats the best thing someone can do for me
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Note the IDSA woman indicated they were all tested twice for Lyme and were negative. This MD tests and 2 are positive via CDC standards.
We all know the tests are flawed even when using all the bands, never mind the restrictive CDC ones.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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quote:Originally posted by Keebler: - Thanks. (I think). It's still sad that they reporters left this looking like the poor girl and her mom are nuts.
That's what the media does every time, it's purposely done. This is not the first time ABC has reported about Lyme and purposely misconstrued it.
They did it with Elaina, if anyone recalls the special on ABC, they grouped her with a bunch of people with psychosomatic illnesses, people who eat rocks etc...
you can see that there is 22 comments underneath the title, but no comments showing in the comment section. Chances are all the comments on this article will be deleted as well. It's great people are posting comments to get the word out, but don't expect them to stay on the article. If you want to get the word out, make your own blog and link to ABC's news article. There's a bunch of free blog websites like blogger.
We're 2013 now, it's remarkable the denial still going on. I have no patience for the media or the CDC anymore. Lies, lies and more lies!!!!
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