Tick-borne disease in Maine: Two standards of care
With an increase in Lyme and tick-borne cases, patients are reporting a variance in how they are or are not being treated. Why? The simple answer is that there are two standards of care, however, the reality is that it’s far more complicated than that. I’ll do my best to explain this is layman’s terms and not get too overly complicated.
The history of Lyme disease
In the early 1970s, a group of children in Lyme, Connecticut, were suffering from puzzling and debilitating health issues. Initially diagnosed as Juvenile Rheumatoid Arthritis but when visits to doctors and hospital stays became more frequent, two mothers from this group became persistent in finding answers and began conducting their own research and contacting scientists. By the mid-’70s, researchers had collected enough data including signs and symptoms and called it Lyme, but they didn’t know what caused it. In 1982, a scientist by the name of Willy Burgdorfer, who was studying Rocky Mountain Spotted Fever at the time, began studying Lyme and soon made the connection between the deer tick and Lyme. He discovered that a bacterium called a spirochete, carried by ticks, was causing Lyme and in 1982 the medical community honored his discovery by naming the spirochete Borrelia burgdorferi (Bb).
Now I’m going to pull out the highpoints:
Initial criteria for diagnosing and treating were set by the Infectious Disease Society of America (IDSA) and then reviewed again in 2006 without change. During this time, another group emerged presenting an equal amount of scientific evidence that spoke to the concerns of delayed diagnosis and improper treatment as contributing to the growing population of patients who remained sick, some with chronically debilitating symptoms. This group was called International Lyme and Associated Diseases Society (ILADS) and consisted of highly educated physicians and researchers with first-hand experience with Lyme and tick-borne disease. Over time and with further research, evidence was produced that patients who were not properly diagnosed and treated early, required a different kind treatment. Evidence that spoke to the myriad of symptoms between adults and children, acute cases versus chronic and late stage and the complications co-infections of another tick-borne disease could cause. It became very apparent to this group that applying a one-size-fits-all approach to treating was not the best course of action and so they began to write their own set of evidence-based guidelines and treatment protocols and training medical doctors accordingly.
Thus, began the controversy with Lyme disease. The IDSA does not and has not since their conception, recognized the validity of ILADS, their medical providers and any of the evidence that they have provided. They claim that their science and evidence is truth and upholding and any other evidence presented is dismissed. Back in 2006, when the initial IDSA guidelines went under review, a huge medical storm was brewing. It was during this time that fingers were pointing and accusations were flying of misappropriate conduct. And even given the amount of new evidence being provided by members of ILADS and other researchers, the IDSA guidelines were deemed adequate and therefore, no need for change.
In 2010, Congressman Chris Smith (New Jersey), chairman of the House congressional panel that oversees international global health issues, introduced a Congressional Record report that exposed research gaps in Lyme disease. Then in 2012, a congressional hearing was held by Congressman Smith, who sponsored federal legislation to expand federal efforts on Lyme and other tick-borne disease through the establishment of a Tick-borne Disease Advisory Committee. Congressman Smith stated the following:
“As I have met scores of patients suffering the devastating effects of Chronic Lyme—who only got well after aggressive treatment by a Lyme-literate physician—I have been dismayed and angered by the unwillingness of some to take a fresh, comprehensive look at this insidious disease. It will be necessary for the physicians, scientists, government leaders, and media to be discerning – to evaluate the evidence to see if it is based on the best science and to scrutinize the studies and the critiques of those studies to determine whether they are of high quality. We need scientists to speak out in an unfettered way. We need government agencies to show leadership and to forcefully say what we know and what we don’t know based on the best available evidence.”
The controversy over the two standards of care has gotten so bad that doctors have reported other doctors for what they feel is medical misconduct. I’ve spoken to providers who call ILADS doctors “quacks” saying that they are self-proclaimed “experts” calling themselves Lyme literate, practicing without science and treating with snake oil.
Well, the National Guidelines Clearinghouse thinks otherwise. The National Guidelines Clearinghouse (NGC) is an initiative of the Agency for Healthcare Research and Quality (AHRQ), under the umbrella of the U.S. Department of Health and Human Services. The NGC recently adopted the Institute of Medicine (IOM) standards for developing trustworthy guidelines, which define the highest level of excellence that a guideline can achieve. Guidelines posted on the NGC website must now satisfy these standards. Thus, the inclusion of ILADS’s peer reviewed guidelines on the NGC website demonstrates that they meet the level of excellence called for by the IOM.
In the fall of 2015, ILADS guidelines were accepted into the NGC database and in February of 2016, the IDSA guidelines were removed after many requests for updates and to this day, they have not been re-added.
Fast forward to today. You have a patient who remains sick, who didn’t respond to the initial course of treatment. Maybe they didn’t present with the classic qualifying symptoms or lab results were initially negative. Maine LD422 passed into public law in 2015 and allows for a provider to treat “alternatively.” The Maine CDC has both the IDSA and the NGC links on their website. Even the outdated IDSA guideline footnote states “adherence is not mandatory nor is it to supersede a physician knowledge and individual patient situation.”
Lyme and tick-borne disease has evolved and is on the rise here in Maine. The best defense, first and foremost, is prevention but if exposed to a tick-borne disease, you want a medical provider using up-to-date diagnostic tools and treatment options.
Paula is the president of the MLDSE, the Maine-partner of the national Lyme Disease Association, a member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at firstname.lastname@example.org