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» LymeNet Flash » Questions and Discussion » Activism » Stamford Advocate Article About CT Lyme Bill

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Author Topic: Stamford Advocate Article About CT Lyme Bill
paulieinct
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State joins Lyme debate. Bill would allow doctors to prescribe long-term antibiotics

By Brian Lockhart
Staff Writer
Posted: 02/08/2009 07:02:25 PM EST


HARTFORD -- State Rep. Kimberly Fawcett has proposed a bill that puts Connecticut in the middle of a nationwide dispute over whether Lyme disease can be chronic.

The Fairfield Democrat joined the fray after her husband was diagnosed with the tick-borne disease last summer. He was prescribed the standard three-week course of antibiotics but relapsed soon after he completed the treatment.

"Within a week, he was violently sick again," Fawcett said.

When the couple sought additional treatment from her husband's primary-care physician, they were told to find another doctor or a specialist, she said.

Doctors "feel like it's something they want to avoid getting involved with if they can," Fawcett said.

The reason is that some in the medical profession question whether Lyme disease can persist, and whether it merits long-term antibiotic treatment, which carries potential dangers.

Fawcett proposed a law that makes it clear physicians have the right to prescribe long-term antibiotics for Lyme disease, which she thinks many would do if they did not fear being reported to the state Department of Public Health.

Her bill, co-sponsored by state Rep. William Tong, D-Stamford, was the subject of a public hearing Friday by the legislature's Committee on Public Health.

Lyme disease, discovered in the mid-1970s in Lyme, a town in eastern Connecticut, is transmitted to humans by the bite of infected blacklegged ticks, according to the


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federal Centers for Disease Control. Symptoms include fever, headache, fatigue and a rash. If untreated, infection can spread to joints, the heart and the nervous system. Most cases can be treated with a few weeks of antibiotics, according to the CDC.

In 2006, the Infectious Diseases Society of America issued Lyme disease guidelines for doctors.

In a letter to Connecticut legislators this month, Anne Gershon, president of the Virginia group, opposed Fawcett's bill, saying there is no such thing as chronic Lyme disease.

"There are no convincing published scientific data that support the existence of chronic Lyme disease," Gershon wrote.

The concept has been promoted by "a small group of physicians," but the dangers of long-term antibiotic therapy are well-documented and should not be encouraged, she wrote.

The society is respected among medical professionals, but critics point to an anti-trust investigation of the group by Connecticut Attorney General Richard Blumenthal.

Last year, the investigation uncovered "serious flaws" in how the group crafted the Lyme guidelines, including an effort to "block" scientists and physicians "with divergent views on chronic Lyme" from the oversight panel.

Blumenthal's probe, and personal experiences, have supporters of Fawcett's bill convinced that chronic Lyme disease is real.

State Rep. Peggy Reeves, D-Wilton, a co-sponsor of the bill, said her husband and 24-year-old daughter have suffered from Lyme disease since the 1990s.

"My husband right now is on four (prescriptions) at the same time," Reeves said.

They had to go to New York to find a doctor willing to treat the illness long-term, Reeves said. Connecticut doctors who prescribe long term Lyme treatments are "persecuted" by the state Department of Public Health, she said.

William Gerrish, a department spokesman, said the agency does not have a policy against long-term antibiotic treatment of Lyme disease. But the department submitted a letter to lawmakers opposing Fawcett's bill because it would strip the agency of its ability to review complaints and violations "particularly in cases where the care being provided to a patient deviates from current evidence-based practice."

Blumenthal said he supports Fawcett's bill in concept, but his office is reviewing it to consider "whether it may be too broad and what its effect will be on other treatment situations unrelated to Lyme disease."

At Friday's public hearing, no doctors testified that they were having trouble treating Lyme patients or being bothered by the state.

"None of them will come on the record," Fawcett said. "It's so controversial and really dangerous to get involved with."

Representatives from the Connecticut State Medical Society testified in favor of Fawcett's bill. They said they were not taking a position on the existence of chronic Lyme disease, but on the right of doctors to treat patients as they deem fit.

Medical society Vice President Matthew Katz said he did not know of any members who have been persecuted by the state health department over how they treat Lyme disease. But the recent case of Dr. Charles Ray Jones, a New Haven pediatrician renowned for treating the illness, has heightened concerns in the medical profession, Katz said.

In December 2007, the state Medical Examining Board, responding to an investigation by the Department of Public Health, fined Jones $10,000 and put him on probation for two years for diagnosing children with Lyme disease and treating them with antibiotics before examining them.

Jones is appealing the decision.

Katz said news coverage focused on the doctor's reputation as a last resort for those complaining of chronic Lyme disease.

"What appeared in the paper and on the news -- Lyme disease mistreatment -- it raised a lot of concerns," Katz said.

State Sen. Jonathan Harris, D-West Hartford, co-chairman of the public health committee, said the topic is more complicated than he thought.

"I'm really starting to get my arms around it. We have to dig down a little more deeply on this to make sure we are doing the right thing," Harris said. "I'm convinced the bill is a well-intentioned effort to get people the care they need."

-- Staff Writer Brian Lockhart can be reached at [email protected] or 750-5352.


Here's the link to the article. Post comments!

http://www.stamfordadvocate.com/localnews/ci_11658937

[ 02-09-2009, 03:14 PM: Message edited by: paulieinct ]

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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bettyg
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paulie, outstanding article!!

can you show the link above so we can go online and leave FEEDBACK comments for the article??

thanks! [Smile] xox

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paulieinct
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Here's the link to the article. Post comments!

http://www.stamfordadvocate.com/localnews/ci_11658937

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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bettyg
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my reply just posted NOW:

Conn's. lyme bill affects all 50 states!

Conn. needs to lead the way since LYME, CONN. is where this god-awful disease was diagnosed that has caused most of us to:

. lose our jobs;
. lose our health insurance coverage;
. end up divorcing;
. lose our kid's custody rights;
. filing for bankruptcy;
. ending up homeless;
. DIE from either SUICIDE or from advanced years of CHRONIC LYME that has created many more illnesses & symptoms!

Today was posted about 2-47 yr. old chronic lyme patients who committed suicide since they could not get the treatment they needed and could NOT eliminate the 24/7 PAIN that goes with this disease! SO SAD for the families to lose their loved ones this way!

15-18 USA states do NOT have any LLMDS, LYME LITERATE mds, so we are forced to go out of state.

Our health insurance companies REFUSE to pay for our lyme appointments, lab work, treatments, etc. because CDC uses IDSA's 06 lyme guidelines!!

06 lyme guidelines do NOT have any of the treatments in it that are APPROVED to be used on "CHRONIC LYME" patients that they refuse to say this terminology even exists! SAME ON YOU !!

I've had chronic lyme for 39 years last christmas. MISDIAGNOSED for 34.5 years by 40-50 drs. in IOWA since we don't have any full-time LLMDS here!!

CONN., please, we want EQUAL TREATMENT ONLY just like cancer, aids/hiv patients get in AMERICA ... land of the free; home of the BRAVE!

Brave is the word describing us the best because we have to continue FIGHTING to get dr. appts., treatments, and REIMBURSEMENT of expenses paid for our illnesses!

BettyG, Iowa lyme activist

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paulieinct
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Betty:

Excellent reply to the article!

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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bettyg
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paul, thank you so much!

glad the one guy gave you a break and STOPPED arguing ... his word, "debate" hog wash ... call it as it is ... arguing! [puke]

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bettyg
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paulie, i just responded again!

[QUOTE who="Julie"]

It is not the duty of our CT DPH to promote one standard of care, if you go to their website and in an indirect manner the only links you will receive on treatment ALL point to the IDSA.


Commissioner Robert Galvin of the CT DPH has submitted testimony AGAINST this bill.

Not to mention that Dr. Matt Cartter head of the Lyme disease program at the CT DPH, has co-authored articles with IDSA authors, most notably Dr.Eugene Shapiro of Yale.
[/QUOTE]

Yes, Dr. Cartter definititely has a CONFLICT OF INTEREST in this since he CO-AUTHORED articles with IDSA authors, most notably Dr. Eugene Shapiro of Yale. Shame on you!

We want FAIRNESS and EQUALITY like cancer, aids, and hiv patients.

Why are chronic lyme/co-infections patients being treated like "lepers"? We don't deserve it.

BettyG
Iowa lyme activist

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mushroomman06
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Bettyg

Great job! I am thankful to have you on our side. If only I could express my thoughts in words that would come across as yours. To the point and informative.


Thank You!

Mushroomman

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liesandmorelies
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Betty G and Paulie!!!!

This is great!!!! Good Job!!! [Smile]

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

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bettyg
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mushroomman and lymewarrior,

thanks so much for compliments.

mushroom...i've very gabby, but so many of these have limited wordage or CHARACTERS, and i'm constantly going over; so i try to get right to the MEAT/DRIFT immediately that it's at the top vs. at the bottom.


mushroom, give it a try! pretend you are talking to ME ok!! i've got faith in you.

writing is also in my former work life as a secretary so it comes rather natural!! but i do struggle on getting out the words; can't remember them many times so try to use another word instead! NOW you try it ok! [Smile]

the more letters the better, and especially for the IDSA LETTERS on new chosen 14 folks!! [group hug] [kiss]


we can sit back and complain til the cows come home, or we can take ACTION by getting involved and put our COMPLAINING INTO ACTION MAKING IT A POSITIVE STAND vs. being afraid to speak up. [Smile]

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