posted
Just a heads up for all CT lymies that WTNH channel 8 is doing a segment on the Lyme controversy in CT. It will be on at 11:00 pm tonight. I heard they will be talking to people who have to go out of state for treatment. Gee, that doesn't sound too familiar?!
If the segment is good, I may contact them tomorrow to see if they would like to speak with me. I just hope it's supportive and not slanted towards the IDSA side of things.
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Leelee
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posted
Gosh, I wish there was someway I could see that here in Maryland.
Please let us know the details after you watch!
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
You should be able to watch the segment on their website after it airs, www.wtnh.comPosts: 195 | From Manchester, CT | Registered: Jun 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
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posted
I saw the promo as well...just check their website tonight or tomorrow...maybe they'll post the segment...
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Leelee
Frequent Contributor (1K+ posts)
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posted
Thanks for the link tdtid. It was a pretty okay report I think. Definitely supported Lyme patient's point of view.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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bettyg
Unregistered
posted
copying it all here and breaking up PLUS comments below too for us neuro patients who cant read or comprehend as is. bettyg
Lawmakers challenged with Lyme Disease
Updated: Thursday, 02 Apr 2009, 8:25 AM EDT Published : Wednesday, 01 Apr 2009, 11:30 PM EDT
* Story by: Jocelyn Maminta
Hartford (WTNH) - Connecticut has long been known as ground zero for Lyme Disease. Now, state lawmakers are taking the controversy surrounding Lyme Disease treatment head on.
Over the years there has been a lot of debate over how patients are diagnosed and treated for Lyme Disease. A bill to protect doctors and help patients could ease that frustration driving many out of state for treatment.
Many are ticked off, banding together, to educate and raise awareness about the tick-borne disease.
When it comes to treatment, some patients go out of state.
Andrew Hancock and his mother drove from Brookfield, CT to New York for their first visit with Dr. Daniel Cameron who specializes in Lyme Disease.
"It's a bit of a hassle," said Andrew. "I wish it was different in Connecticut but it's not, so we're here."
"We haven't really seen anybody who specializes in Lyme, which is pretty ironic considering we live in Connecticut," said Laura Hancock, Andrew's mother.
Waiting patiently is Erin Morrissey and her mother from Glastonbury.
"She wasn't being diagnosed in Connecticut," said Erin's mother Betty. "I was very worried about her. She has been very sick."
"I'm doing better, it's a slow process," Erin said. "Week by week, I see improvement so it makes me happy but it's been frustrating."
Connecticut families like the Morrisseys and Hancocks make up about 10 percent of Dr. Cameron's practice. That's because in the state of New York, he is able to diagnose and treat without fear of retribution.
"As a doctor, I can't rely on just the test. I can't rely just on the rash. I need to look at the whole symptom pattern," Dr. Cameron said. "I need to be able to take my patients, diagnose them and treat them based on what I learned in medical school."
The medical community is at odds as to whether chronic Lyme Disease exists and over long term treatment, which includes intravenous antibiotics.
In Connecticut, supporters say doctors who choose the latter, are haunted by past threats of losing their license.
"That perception has really turned into a tangible reality," said Rep. Kim Fawcett. "[A perception] that a lot of doctors out there maybe just think, Lyme Disease, I don't want to get involved in it. So what they do is deflect to their patients, 'I can't really treat you here, you have to find a specialist.'"
That's why State Representatives Kim Fawcett and Jason Bartlett are leading the change behind a bill to protect Connecticut physicians.
"Our legislation doesn't say what they do. It just gives them the freedom to diagnose clinically and treat how they see fit," said Rep. Fawcett.
But the Department of Public Health disagrees and sent testimony against house bill 6200.
"We oppose any bill that would prescribe or limit any particular kinds of treatment," said Dr. Robert Galvin, CT Public Health Commissioner.
However, activists say the department is behind much of the scrutiny doctors are feeling.
"The department does not hunt down physicians and try to impose regulations on them. We do respond to complaints which may reach us from hospitals, from families and from other physicians and when that happens we investigate the complaints," said Dr. Galvin.
To encourage doctors, the Connecticut State Medical Society is in support of the bill.
"There is a perception in the community that there are physicians who are reluctant to treat patients particularly in Lyme Disease because of some fear that there might be retribution because of that treatment," said Dr. William Handleman, President of CT State Medical Society.
The bill would help families like the Hancocks stay closer to home, getting relief from a debilitating disease.
The joint committee on public health voted unanimously in support of the bill. Now supporters will push for a vote before the House and Senate during this session. A similar bill was passed in Rhode Island.
Visit Lyme Rights or Lyme Disease Association for more information.
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Kathleen M. Dickson
The CT Medical Board is made up of Yale physicians who happen to be in on the crime over which the AG sued. So, they should not have even been contacted for comment here, since that's clearly a conflict of criminals' interest.
They were SUED and refused to turn over to the CT AG their own, self-incriminating data.
I wonder when JAMA and the NEJM (Mass Medical Board) intends to figure out that maybe we're waiting for them to report what was the data IDSA and Yale (and UConn) refused to turn over to Mr. Blumenthal.
Maybe in the new stem cell research we'll be having, new brain cell stem cells could be transferred to the CT Medical Board, JAMA, NEJM... Report Post reply � 13 hours ago
CTPatriot
Dr. Galvin, unsurprisingly, misrepresents the Lyme disease bill, HB 6200.
It does not have anything whatsoever to do with prescribing or limiting treatment, as he insinuates.
What the bill DOES do is prevent the Dr. Galvin and the CT DPH from limiting treatment options available to CT Lyme disease patients by pressing charges against doctors who choose to treat the disease with longer courses of antibiotics than those mandated by
Infectious Disease Society of America's (IDSA) guidelines (the same guidelines which were investigated by CT Attorney General Blumenthal who found significant conflicts of interest amongst the authors which might have impacted the guideline creation.
IDSA is now reviewing said guidelines under the auspices of an outside medical ethicist).
Galvin also speaks a half-truth when he asserts that the DPH, "doesn't hunt down physicians and try to impose regulations on them."
While it is technically true that they don't intiate their own witch hunts against doctors, and that their actions are triggered by complaints from outsiders, the DPH has allowed themselves to be used by those outsiders to de-facto impose the very regulations they innocently deny interest in.
When you have a track record of investigating and attempting to press charges against nearly every long-term treating Lyme disease clinician in the state, you create a climate of fear amongst any and all physicians who might consider treating chronic Lyme disease (CLD) outside the box mandated by IDSA. That is imposing regulation by fiat.
Additionally, Galvin conspicuously omits insurance companies from the list of sources whose complaints they act on.
Insurance companies especially do not like to pay for extended treatment of Lyme disease and have been found to be the origin of a number of complaints across the country against doctors who treat chronic Lyme disease.
Perhaps he doesn't want you to know that state departments of health are often acting on behalf of the insurance industry rather than on behalf of patients.
HB 6200 is about protecting CLD patients and the doctors who treat them from the CT Health Department's overzealous enforcement of an ideologically driven and scientifically untenable view of Lyme disease diagnosis and treatment as promoted by the IDSA.
It should come as no surprise that the CT DPH opposes this bill.
Kudos to WTNH for an excellent report. Report Post reply � 12 hours ago
SFP
Dr. Steve Phillips in Ridgefield in an expert in Lyme. I saw him in the early 90's for it. He's seen patients from all over the world. Report Post reply � 6 hours ago
Ache all over
I'm suffering now, 10 years later, because 2 Drs wouldn't treat me, tho I had all the symptoms except the rash, and my tests (which were inaccurate back then) .
Finally found one who prescribed antibiotics, and got better, but by that time, it was too late. Report Post reply � 5 hours ago
orange_ct
I'm right with you Aches... I too have chronic pain in my hip, ankle and hand.
I came up a with a raised titer on the waetern blot and elisa, the doctor refused to prescribe antibiotics because I had no rash.
Even though I live in a high risk environment. I also get fatigue and low grades fevers which are annoying. I live in fear of getting biten again... Report Post reply � 5 hours ago
jonathan
pretty soon it will be illegal to go outside because the insurance companies won't want to pay for any air borne or dirt borne problems.
I am disgusted with us. We are a disgrace to the world. Live Free Hurt No One do what ever you want. Humans suck.
what are they going to make Lyme disease illegal. HAH The government should stay out of our way, not get right in the middle to allow no passage. Report Post reply � 3 hours ago
Steve
I was so sick in 2007 I was about to become completely housebound - my "in-network" doctor, after numerous visits with his staff, saw me for 20 minutes and told me that all of my symptoms were in my head and walked out of the exam room.
If I had stopped there and taken his "professional" counsel, I would either be bed-bound or dead.
Fortunately, I sought treatment outside of traditional medicine and found a naturopathic physician in New Hampshire who diagnosed me after 2 Western Blots (which insurance would never pay for) and I have been on antibiotics for 15 months.
What is happening with the medical insurance industry is nothing short of criminal and I can only hope that one day that the suffering which people have had to go thru at the expense of ideology and profit will finally come to light.
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bettyg
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posted
don't know whose post ... but i copied the entire post and all 7 comments breaking them up.
could someone find that and post here? swamped and leaving soon!
just click on my profile, right side of my name click on RECENT POSTS, i just did this earlier today when coming on .... thanks!
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sizzled
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posted
"Maybe in the new stem cell research we'll be having, new brain cell stem cells could be transferred to the CT Medical Board, JAMA, NEJM..."
HAHAHAHHAHAHAHAHAAHAAHAHHAHAA!
God, I love Kathleen!
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sizzled
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posted
Leave Dr. Jones alone!!!!!
He has done nothing wrong!!!!!
Posts: 4258 | From over there | Registered: Jul 2001
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Just cuz I was looking around for my post about Extrapyrimidal stuff....I saw this Tonysgirl post...
NO...I do not know this chick!
She's not, this tony's girl anyway...not that I know of...LOL!???
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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