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Senator Blumenthal’s Lyme Disease Legislation

Senator Blumenthal of Connecticut Lyme disease advocate

Sen. Blumenthal has long fought for Lyme disease patients' rights to fair treatment.

Connecticut’s junior senator, Richard Blumenthal, is making waves again in the scientific community as he tried to introduce the “Lyme and Tick-Borne Disease Prevention, Education and Research Act” in the Connecticut assembly. The Act is intended to promote education and awareness of Lyme disease in New England in an effort to reduce the number of people infected and provide better treatment for those who do contract the illness. Other senators who are cosponsors of the bill include Jack Reed, Sheldon Whitehouse, Kirsten Gillibrand, and Joe Lieberman (a late arrival to the party).

Some have argued that the legislation is harmful rather than helpful however, with the potential to turn good intentions into stumbling blocks for those protocols already in place to deal with Lyme disease at both state and federal level. Others contend that the current process is defunct and panders to the outdated ideas of the Centers for Disease Control (CDC) and the Infectious Diseases Society of America (IDSA), whilst ignoring more recent evidence regarding chronic Lyme disease and antibiotic treatment.

Senator Blumenthal has campaigned on the issue of Lyme disease and the guidelines for testing, diagnosis, and treatment of suspected infection with Borrelia burgdorferi. This has somewhat endeared him to many Lyme disease advocates and patients, in Connecticut, a key place in Lyme disease history, and further afield. Indeed, when introducing the legislation, Sen. Blumental had the two leaders of a major Lyme disease advocacy group (Time for Lyme) with him. These three, and many others familiar with Lyme disease, are concerned that current guidelines do not reflect the true nature of the illness as they dismiss the idea of chronic Lyme disease as being limited to a small number of patients, as well as maintaining that Lyme disease test, such as the ELISA test, are adequate for diagnosing the infection. Those doctors providing care that contravenes official guidelines, perhaps following the ILADS guidelines instead, are open to attack by insurance companies, medical licensing boards, and even public prosecution.

What’s Wrong with Current Lyme Disease Policy?

The CDC maintains that only around 10-20% of patients have any lasting symptoms of Lyme disease, and that a short course of antibiotics (of two to four weeks) is sufficient in most cases to eradicate the infection. Newer evidence suggests that the Lyme disease bacteria may avoid detection and destruction by antibiotics by changing into a cystic form, from its usual spirochaetal form, thus laying dormant in the body until the ‘threat’ from the medication has passed. The bacteria are, therefore, still present and able to cause persistent symptoms in-between antibiotic treatments. Cyst-busting drugs and antibiotics are becoming a popular treatment for Lyme disease administered by so-called Lyme Literate Medical Doctors (LLMDs).

Unfortunately, there is some evidence, oft cited by the CDC and IDSA, that long-term antibiotic treatment is not helpful, and possibly dangerous, in most patients, thus making it inadvisable for treating persistent symptoms labelled as being Lyme disease-related. Instead, they claim that the symptoms are a result of recurrent infection, tissue damage from the initial infection, or a result of a different illness that remains undiagnosed. Long-term antibiotic treatment has led to a few deaths of Lyme disease patients, through antibiotic-resistance and serious infection, as well as causing severe problems with patients’ gallbladders and livers.

The New Lyme Legislation

The new legislation introduced by Blumenthal hopes to engender an atmosphere of scientific community where dissenting voices are allowed to be heard as part of a ‘Tick-Borne Advisory Committee’. The legislation would see the establishment of a Tick-Borne Disease Advisory Committee reporting to the USDOH, as well as efforts to improve both public education and physician education, and encourage the development of better diagnostic tools and reporting of Lyme disease. There would also be a report on the current guidelines for Lyme disease diagnosis and treatment, to be produced by the HHS and delivered to the USDOH.

In both the report and as part of the Advisory Committee to be established, Blumenthal includes a requirement for a ‘diversity of scientific perspectives’ which has some people worried that pseudoscience may come to influence disease management in the state, as well as federally should the legislation spread farther afield. The problem with such language is that it suggests that there are many versions of the scientific facts and that every approach should be granted the same weight in the discussion. Science does not work that way however, and there is a danger that the legislation will do a disservice to patients with a serious illness by legitimizing treatments that have little real scientific merit.

A Wake-Up Call to the CDC and IDSA

The spirit of the legislation is to be commended as Blumenthal and his cosponsors do seem to genuinely care about the issue and how it affects patients and their families. Judging all those involved with the CDC and the IDSA as corrupt and unworthy of respect is inadvisable though as some of these scientists have significant experience with Lyme disease. Perhaps instead, the institutions and organizations involved in managing Lyme disease, such as the CDC, IDSA, National Institutes of Health, and the Departments of Health, could treat this as a wake-up call. Clearly their authority has been eroded by poor communication with the general public, by a lack of interest in any point of view that contradicts their stance on issues such as Lyme disease, and an ‘old guard’ attitude that keeps the same scientists, researchers, and doctors, at the center of policy when they may be better served by fresh faces approaching the issue with a blank slate and no reputation yet to defend.

Writers at other advocacy groups have challenged those calling for the legislation to die in committee, stating that the arguments against Blumenthal’s act are based on outdated information or simply misinformation. The danger is that in the furore caused by the legislation those patients desperately seeking help are so alienated from conventional medicine that they become vulnerable to exploitation by peddlers of Lyme disease quackery. The legislation may be a waste of money in terms of actual implementation of any Lyme disease control and prevention efforts but could be worth every cent as regards waking the official bodies to the unhappiness, dissent, and devastation caused by the current status quo. By working together, rather than continuing the bitter fight around Lyme disease, The Lyme and Tick-Borne Disease Prevention, Education and Research Act proposed by Senator Blumenthal could help fill the gap between outdated policy and patients in need.

{ 4 comments… add one }
  • Melissa September 2, 2011, 5:07 am

    How can we help get this going?

  • russ volkers October 1, 2011, 1:13 am

    My 16 year old son has chronic lyme! – i will tell you this I WOULD NOT CARE IF IT WAS THE DEVEL HIMSELF that did anything to make folks aware of just what is going on here! My son played lacrosse – went to school – was looking forward to driving and working a part time job!
    My son and i enjoyed fishing together and being active and doing things. These days (for the last year) my son enjoys – being in bed – taking medicine – falling asleep in the shower – and long wonderful hikes up the stairs to go to bed! – FOR ANYONE to say that “it’s all in your head” needs a wake up call! of course insurance doesn’t pay for pay of it because the so-called medical EXPERTS that dictate what gets paid and what is real say chronic lyme does not exist! we live in a world that the media would spend hours on things that do not mean anything to half of us living in this great land! — I would not wish this ILLNESS and my sons condition on anyone “well maybe some of the big wigs that say it doesn’t exist” could use a dose of Borrelia burgdorferi to see what it is that doesn’t exist!! WAKE UP FOLKS IT IS AN EPIDEMIC – thanks be to anyone who wants to help get the word out and take on this cause!

    • Rebekkah February 11, 2012, 3:54 am

      I’ve had the same strain of chronic Lyme for the last 10 years! 5 years ago I was also diagnosed with Sjogrens and RA. Ironically enough, some of the treatments for those illnesses (plaquenil and Celebrex) seem to have helped the Lyme symptoms as well as the autoimmune symptoms…. Some say the autoimmune diseases are triggered by the Lyme… I don’t really know how they can deny its a chronic condition when over 10 years I’ve tested positive 4 times and the western blot shows it an active but old strain of B.B.
      How is your son doing?….

  • Carolyn Brockman February 19, 2012, 1:48 am

    I have late stage boreliosis (Master’s disease). I am nearly complete with my doctorate in education, Instructional Technology, as well as being a newlywed. I use a wheelchair at work and sleep at hour or two each day in my office just so I can keep going. It is painful. boreliosis has effected my cognitive abilities, libido, hearing, eyesight, memory, speech, metabolism and energy. I have thousands of dollars in college loans to keep my dissertation enrollment going. I want to be a part of anything it takes to help in the process of getting treatment for people.

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