"Chronic" Lyme disease bill becomes law in Maine

"Chronic" Lyme disease bill becomes law in Maine

"An Act to Improve Access to Treatments for Lyme Disease," recently passed by the Maine Legislature, sounds innocent enough, but wait until you read the text. What this bill actually does is allow so-called "Lyme literate" physicians to escape censure from the authorities and bamboozle patients into spending their hard-earned money on unproven and possibly harmful long-term antibiotic treatments for a fictional disease. The Act became law without the Governor's signature. 

"Chronic" Lyme disease is a diagnostic label for a collection of diverse symptoms suffered by patients who may, or may not, have been bitten by a tick carrying Borrelia burgdorferi, the organism responsible for real Lyme disease. No one -- including "conventional" medical doctors -- disputes that these people are suffering. The question is: "From what?" As is all too often the case, there is a self-styled medical maverick who has just the solution. Here, it is the "Lyme literate" physician.   

A whole health care cottage industry has grown up around this fictitious diagnosis, which includes, in addition to physicians, various alternative medicine practitioners, and labs which use unconventional tests to sell the patient on the diagnosis. Having dispensed with the need for objective testing and firm diagnostic criteria, a capacious range of symptoms is a ready rationale for all manner of CAM treatments, such as herbs, supplements, homeopathy, cranial sacral therapy, and such. The favored medical treatment for "chronic" Lyme is long-term antibiotic therapy, an odd choice in the normally pharmaceutically adverse pseudoscience universe.  

SFSBM's own infectious disease expert, Mark Crislip, MD, has written about this burgeoning trade in human suffering extensively, and you can enjoy the fruits of his labor over on SBM (also here). Pediatrician John Snyder, MD, offers a thorough analysis of bogus Lyme testing on SBM as well.  I'll leave the science in their capable hands. 

As with other medical issues, such as vaccination, that have been politicized by a small but vociferous special interest group, one of the battle grounds on which science must fight pseudoscience is the state legislature. Unfortunately, science is often no match for the touching anecdote, which ascribes a miraculous recovery from disease to a caring doctor who had the courage to battle the conventional medical establishment (in this case, the evil Infectious Diseases Society of America) with unconventional treatments. These brave but beleaguered mavericks are at risk of being disciplined by their medical board overlords if the legislature doesn't intervene.  Maine is not the first state to fall for this dog and pony show. 

The Act gives the broadest possible discretion to the treating physician in determining whether the patient has Lyme disease. (The term "chronic" Lyme is not used, but it is obvious what they are talking about.)  It defines Lyme disease as an infection meeting the CDC criteria or

"a clinical diagnosis of Lyme disease that does not meet the surveillance criteria for a Lyme disease set by [the CDC] but presents other acute and chronic signs or symptoms of Lyme disease as determined by a patient's treating physician."

To institute treatment, you don't need evidence of an actual tick bite, such as a rash, or a positive lab test for diagnosis. The new law specifically says that all you need is

"a clinical diagnosis that the patient has Lyme disease or displays symptoms consistent with a clinical diagnosis of Lyme disease . . . based on knowledge obtained through medical history and physical examination only or in conjunction with testing that provides supportive data for the clinical diagnosis." 

In other words, it's open season on patients for Lyme literate physicians, who are now permitted by law to determine whether "other acute and chronic signs or symptoms" could be Lyme disease.  And what are the possible "acute and chronic signs or symptoms." Well, there are plenty to chose from. (I am not the first to comment on the generous list of symptoms that can be crafted into a diagnosis.)  Indeed, so impressive is the list of symptoms that one wonders what wouldn't be a "sign or symptom" of Lyme disease.  Here are a few from "chronic Lyme" guru, Joseph J. Burrascano, MD:  unexplained weight gain, or weight loss, or hair loss, erectile dysfunction, constipation, diarrhea, nausea, stomach pain, seizures, light sensitivity, bipolar, hallucinations, depression, unexplained menstrual irregularity, breast pain or milk production, irritable bladder or bladder dysfunction, and head congestion, to name a few.  The CDC's list of symptoms includes none of these. 

Once the diagnosis is made based on these forgiving standards, the physician

"may prescribe, administer or dispense long-term antibiotic therapy for a therapeutic purpose to eliminate infection or to control a patient's symptoms . . ."

Neither the Infectious Diseases Society of America or the CDC recommends long-term antibiotic therapy, and the research backs them up on this. Long term antibiotic therapy is both ineffective and can cause serious side effects.  

As the Act's name suggests, Maine's new law certainly improves access to treatment. It's just potentially dangerous treatment with no good evidence of effectiveness for a disease that doesn't exist in the first place. 

Points of Interest 07/05/2015
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