Governor signs Lyme disease treatment bill into law

Gov. Peter Shumlin signed a bill Thursday aimed at giving doctors more latitude to treat long-term symptoms of tick-borne illnesses, which advocates lauded as a good first step.

“We have one of the highest rates of Lyme disease in America, per capita, and what we know about Lyme disease is that if not detected early it is an extraordinarily debilitating disease that can uproot the life of an otherwise very healthy Vermonter,” Shumlin said.

The number of confirmed cases of Lyme disease in Vermont grew from 11 in 2002 to 674 in 2013. Shumlin encouraged Vermonters to become educated about the symptoms of Lyme and check themselves regularly for ticks.

The law requires the state Board of Medical Practice to issue a memo saying that it won’t censure clinicians for using alternative methods to treat patients with ongoing symptoms of Lyme and other related diseases.

Lyme disease and other tick-borne illnesses are typically treated upon diagnosis with a two- to four-week course of antibiotics, and if caught early, the disease is unlikely to have lasting health effects. However, if it’s not detected early, it can be difficult to diagnose and treat.

There is medical controversy over the benefit of using long-term antibiotics to treat persistent symptoms of those illnesses.

Centers for Disease Control and Prevention guidelines advise against long-term antibiotic treatment. The agency points to studies that show prolonged antibiotic treatments don’t lead to better outcomes than placebos and can lead to serious complications.

But the International Lyme and Associated Diseases Society provides guidelines for the treatment of persistent Lyme that include prolonged antibiotics as an effective treatment. The society is a nonprofit medical group focused on the diagnosis and treatment of Lyme and associated diseases.

Advocates said it’s difficult to find doctors who will treat their symptoms using longer courses of antibiotics, forcing patients to go out of state for treatment in some cases.

Carol Gardner, a family medicine doctor in Colchester, who frequently treats patients for lingering symptoms of Lyme disease, said the bill gives her peace of mind.

Gardner said she’s never experienced any direct pressure from the Board of Medical Practice or the Vermont Medical Society, but she said, “We know they have a more conservative view.”

The board’s job is to enforce medical standards and because Lyme is an emergent problem, those standards don’t endorse alternative treatments, Gardner said.

David Herlihy, executive director the Board of Medical Practice, has said there are no public cases of physicians being sanctioned for prescribing antibiotics to treat Lyme in a way that didn’t mesh with the board’s guidelines.

Investigations of complaints against physicians only become public when they result in charges or a stipulation against physicians.

Dr. Harry Chen, commissioner of the Department of Health and a past member of the board, has said there are other ways, short of a stipulation, that the board can exert influence on a provider, but he has not seen it used to discourage a specific treatment.

“(The law) removes restrictions, or perceived restrictions, on doctors from being able to practice a range of medical care for people with Lyme,” said Sen. David Zuckerman, P/D-Chittenden, who joined the governor, several other lawmakers and activists who pushed for the new law – many of whom suffer from the ongoing symptoms of Lyme or have loved ones who do.

Zuckerman’s wife, Rachel Nevitt, attended the bill signing as well. Nevitt has Lyme disease and her symptoms have taken an emotional toll on their marriage and impacted their family business, he said.

Patients like Nevitt suffering with prolonged symptoms can experience severe fatigue, headaches, joint pain and anxiety.

“Prevention is the most important thing, second is early detection,” Zuckerman said, adding that he hopes the new law will bring greater awareness of the signs of Lyme among health care providers and the public.

Bernadette Rose has struggled with persistent symptoms of Lyme and spent nearly a decade advocating for legislation to protect physicians and increase education around alternative treatments.

She said the bill is a step in the right direction, but she hopes the medical community will include the guidelines for treatment endorsed by the International Lyme and Associated Disease Society as part of continued education for physicians.

Morgan True

Comments

  1. What Is Lyme Disease:  An evidence-based exploration of the concepts and common medical misconceptions of Lyme disease  

    http://youtu.be/tX70ivbRyJ4

    • Tina Lymie :

      Thanks Jeff! I just shared on my facebook. That video is awesome.

      • Pat Forrest :

        I am so happy about this my daughter Julie been fighting Lyme for years and its about time this bill was sign. Its taken so long for people to realize there Lyme and its not something made up so I stand behind her and her dad to .So my darling daughter its done .Pat Forrest

  2. Ben Maddox :
    • Tina Lymie :

      Ben – the article is dated Oct , 4, 2007. I think we need to be looking at more current information, no??? Almost 7 years ago.

    • Matt Fisken :

      From the blog: “Sometimes the disease is completely fictional, like electromagnetic hypersensitivity.”

      Making the argument that EMFs do not produce noticeable acute health effects in a subset of the population certainly discredits the information within the source.

      It never ceases to amaze me how offended some high-paid mainstream medical practitioners get by the suggestions that 1) man-made environmental stressors cause illness and 2) their expertise in specific fields/practices blinds them to some very basic information about human health.

  3. Bob Orleck :

    Sounds as if the legislature and the Governor are practicing medicine without a license!

    I am a pharmacist and have dealt with the issue of Lyme disease and physician treatment for years. Once the disease has taken hold of the patient I am not convinced that “long-term treatment” with antibiotics will help that much. On the other hand there are dangers to the patient and to the public at large with the overuse of antibiotics and the development of resistant organisms. It could well be that the dangers from such use of antibiotics tip the scales against it.

    Why was this law needed anyway? Physicians have the ability to treat patients in this manner if they choose and no physician has been censured for doing so. For those who put their faith in government knowing all, it may look as if the state has gone on record telling physicians that they should be more willing to use this questionable protocol and in doing so they have done a disservice to public health.

    I have always been irritated by physicians who take a wait and see with patients who have been bitten by a tick and have a rash from it. The very “short term” use of an antibiotic such as Doxycycline kills the bacteria before it spreads through the body. To wait and watch allows the bacteria that causes Lyme disease to be spread through the body making it harder to kill and the then using of questionable “long-term treatment” with antibiotics puts the public and the patient at risk from that treatment.

    If they want to “practice medicine” maybe the legislature should pass a law making it a right for anyone to get some of that Doxycycline when they tell doctor that they have been bitten by a tick. Better yet, leave the practice of medicine to physicians even if they sometimes err in their judgment and as lawmakers stick to doing only what our constitutions allows you to do. We would be a whole lot better off if you did.

    • victor ialeggio :

      “I have always been irritated by physicians who take a wait and see with patients who have been bitten by a tick and have a rash from it.”

      Thank you, Mr Orleck. In 2014, it’s hard to understand any physician reticence about immediate, short-term treatment with a powerful antibiotic to counter the Lyme infection, especially given the enormous documentation of ruined lives in the latter chronic stage of the disease, in cases where the infection had gone undetected or untreated for years.

      I grew up in eastern Long Island, one of the earlier nodes for Lymes. I’ve had it several times (as far as I know…), on Long Island and in Vermont. At no time time did a “bulls-eye” or any other “presentation” rash occur. What cued diagnosis each time was a sudden onset of malarial-type symptoms — raging fever alternating with bone-shaking chills and painful myalgia, and a quick thought as to where I had been, two weeks or so before. (I had a neighbor on LI who was director of the Lyme Clinic at Stony Brook Univ. and had given elementary school presentations in the village. This was in 1985.)

      A heavy dose of Doxycycline (balanced by lots of probiotics) clobbered the infection each time.

      Here’s what the ILADS (Evidence-based guidelines for the management of Lyme disease) says:

      7. Highlights of guidelines.
      -Since there is currently no definitive test for Lyme disease,
      laboratory results should not be used to exclude an individual
      from treatment
      -Lyme disease is a clinical diagnosis and tests should be used to support rather than supersede the physician’s judgment
      -The early use of antibiotics can prevent persistent, recurrent
      and refractory Lyme disease
      -The duration of therapy should be guided by clinical
      response, rather than by an arbitrary (i.e., 30 day) treatment
      course

      Sec. 11. Disappointing results of symptomatic treatment.
      A theoretical immune mechanism has been proposed to
      explain persistent symptoms in chronic Lyme disease, but no
      clinical or laboratory test can confirm this theory. The
      immune mechanism theory is based on physiological events
      (often in the form of cascades) that are not reversed by simply
      killing the infecting organism.

    • Timothy D. MacLam :

      “Sounds as if the legislature and the Governor are practicing medicine without a license!”

      If a lay citizen practiced medicine without a license, s/he would be prosecuted. When $humlin does it we are persecuted. Why bother with the Board of Medicine and standards of care when the governor and general assembly have shown an unusual zeal in this biennium to regulate practice?

    • Rachel Nevitt :

      Since when is “allowing doctors to treat as they see fit,” practicing medicine? For some reason the medical community keeps claiming that the legislature is telling doctors how to treat when the bill clearly is allowing doctors to treat to the best of their abilities.

      Currently there are restrictions on how doctors can treat. As a backlash to this bill, our own Dept of Health is helping to tighten those restrictions. There is enormous pressure from the institutions that hire doctors to keep them from treating. Should we sue the hospital CEOs for practicing medicine w/o a license?

      The labs at Fletcher Allen and Porter are over-riding doctors requests for Western Blot tests if ELISAs are negative. If labs can tell doctors that they can’t practice medicine as they see fit, why isn’t it okay for the legislature to stop the labs from interfering?

      As for antibiotic resistance, I get it. Nobody wants that. But doctors are already over-prescribing antibiotics for things. If you want to stop that in every arena, go for it. But don’t just attack Lyme docs.

      Also, if you eat factory farmed meat, you’re a hypocrite. 70 – 80% of the antibiotics produced in this country are fed to our meat supply. If you want to tackle antibiotic resistance, start with the meat industry and then come back to medicine.

  4. Ben Maddox :
  5. Bern Rose :

    Just this week the CDC had a change of heart and decided that NOW the fetus of pregnant women with Lyme are at great risk of infection, neurological damage, still birth, and active lyme at birth. The CDC also went from confirming 33.000 NEW cases in 2013 to 300,000 NEW cases – overnight 1.000x difference? Lyme is here, and we need to learn how to repel, detect, and treat ASAP.
    The “Lyme debate” probably has less to do with the disease than the backers of the IDSA, and insurance lobby. There is enough research and clinical data to validate Lyme and Tick Borne Diseases. Just because most doctors can’t figure out the complexities of treating it, doesn’t mean it doesn’t exist. An Osteopath is a specialty such as oncology. Would you consider slamming an oncologist because they recommended supplements or special diet to go with treatment? Lyme isn’t making anyone big money. By denying it and limiting patient care to 30 days, insurance companies are saving big bucks, and doctors who are baffled, can send patients away. What is not seen is the back end of the disease – severe neurological issues for kids, loss of productivity.

  6. Kathy Leonard :

    Were any of the above commenters present in the statehouse to hear the testimony on this bill from its advocates? I wasn’t there but I learned quite a bit by reading previous stories and comments here on Digger. I learned that Dr. Till boycotted a pertinent hearing for what sounds like a suspect reason, and I learned from one commenter that:

    “Vermont has the 2nd highest incidence rate of Lyme disease in the USA, and only 2 doctors left in the state willing to treat complex and persistent cases. And both do it with caution and trepidation because of their fear of reprisal.”

    Everyone has a right to an opinion, but without listening to those advocating for this, it wouldn’t be a very informed opinion.

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