What would you say about an organism that takes full advantage of our human weaknesses in our political, societal & modern health systems and has perfected a delivery mechanism which is spreading it around the world? That is both exploding in prevalence but marginally recognized, talked about and hidden at the same time? An illness in which health insurance companies can cut off treatment because they deny the existence of its chronic form but disability insurance companies deny coverage because it is a growing category of disability claims? Where patients get caught in the midst of a medical community at battle and cry out for someone to make sense of it all and stop their suffering? Borrelia Burgdorferi, better know as Lyme Disease, is an organism that is flourishing beautifully in America’s health crisis that exists at the cross roads of processed foods, chemical exposure, stressful work lives and diagnostic code, one-size-fits all, pharma-driven medicine. We could conclude that this organism is brilliantly adaptive or simply exists in the right place at the right moment in history. Perhaps it’s both.
What I hope we will do is open our eyes to its existence and the conditions which help it to flourish (there are 300,000+ cases a year and growing) and collectively demand change as happened in the early stages of the AIDs epidemic. Denying its existence or simply hoping to escape its bite protects no one. This denial is leaving a wake of suffering patients in its path like the collateral damage otherwise known as civilian deaths when we are at war. We are all vulnerable. Here is my take on the conditions that are helping Lyme to flourish.
On an individual level, Lyme flourishes in individuals with any kind of immune system weakness which are more of us then you might think at first glance. Do you have mold allergies, food allergies, gut issues, thyroid disease or other auto-immune condition or have a high-stress constantly on-the-go life style fueled by coffee, fast food, sugar and not enough sleep? If so, Lyme will find you to be a perfect host and will quickly exploit your health weaknesses and establish a strong foot hold. If you are lucky enough to get treated thoroughly right away you might be one of the lucky ones that escape it’s arrow. If not, the path to healing is long, painful, expensive and for 20-30% of patients potentially life long.
A close friend of mine was recently diagnosed with Lyme and asked, “Why isn’t the medical community paying more attention to this?” It is a very complex situation and my best understanding is this. There are three sets of doctors out there. 1) Those who follow their med-school training that says “Lyme Disease is hard to catch and easy to treat. If a tick is attached for less than 48 hours you can’t get Lyme. If you have received two weeks of antibiotics you are cured of Lyme without exception and any continuing symptoms have to be from another cause.” 2) Doctors who have noticed a stream of sick patients that don’t conform to their med-school training and have broadened their training and approach. 3) Doctors who have contracted Lyme or have family members who have contracted Lyme and have had a personal close up look at how devastating it can be and take a deep dive into understanding the illness, treatment options and have deep empathy for the suffering of their patients. There are also doctors out there who are outright hostile about treating Lyme at all even in an endemic state like NH and will not give people antibiotics even with clear symptoms and an obvious tick bite. To me this is malpractice and akin to not setting a broken leg.
So how is it that we have medical providers who believe in or don’t believe in Lyme or hostily refuse to treat it? I’ve never heard of doctors refusing to treat cancer patients for example. There is a larger context that these doctors operate in which is a volatile, deep rift within the medical, research and insurance community about how to treat this illness. This rift and resulting inaction in the mainstream medical community has created a perfect opportunity for this highly adaptive bacteria to thrive and left an increasing number of suffering patients in its wake. Innocent patients are becoming the “collateral damage” of this battle. I can’t go anywhere in New Hampshire without hearing stories of people struggling with this disease (in severe pain, cognitive issues, heart, hearing & vision problems resulting in disruptions to work, school and family life) and continue to be amazed that the public health department is nearly silent on this issue beyond encouraging people to check for ticks when they have been outside.
A collision of ego-centric thinking, profit-seeking and politics seems to have paralyzed the medical community from moving as a united front to put patients first. Politics and bureaucracy place a small group of people at the IDSA (Infectious Disease Society of America) in charge of deciding what the official government and insurance company recognized definition of the disease and the associated treatment and testing protocols. People who challenge the current panel’s thinking are excluded from participating on the panel. Nearly all of the current panel members have conflicts of interest such as ties with certain research companies, insurance companies or pharmaceutical companies that all have a financial stake in the outcomes of this work. Those on this panel use their government sanctioned power as a tool to discount Lyme patients (apparently there is a massive out-break of patient hysteria in the US as opposed to a massive and growing health crisis). They also discount the researchers and doctors that disagree with them as full of crap. Much of the funding for public health in NH comes from the federal government which helps to explain their silence on this issue. Many patients see this battle and are so exhausted by illness and the effort of trying to get well that they do not want to engage in a political battle where those with the official power are going to call them crazy.
Research dollars dedicated to understanding this disease and possible treatments are very limited. Too much of this small funding pie is aimed at defending or proving a certain point of view held by the IDSA panel (that chronic Lyme doesn’t exist or that antibiotics don’t help Lyme Disease patients) rather than deepening our understanding of how this bacteria works, why patients stay sick and how we can help them to feel better. I see an effort to manipulate the outcomes of research in much the same way lawyers control the information that jurors can hear about a case to tilt things in their favor. Many of the government-funded studies for new testing or evaluating treatment use a “tame” strain of Bb which does not reflect the “wild” strains patients are actually exposed to. Patients who might skew research results are excluded from studies by narrowly defining who can participate. In other words, our narrow slice and dice approach to research does not reflect what is happening in real life and keeps the big picture out of sight. This chaos keeps valuable resources needed to find a cure and to slow the tide of a growing epidemic tied up in a political battle rather than directing them to helping people get better.
There is a saying in the Lyme community that you don’t “get it” until you “get it.” I for one am deeply frustrated by this situation which is growing into a public health crisis. There are examples throughout history of human communities self-destructing when they would not change what they were doing. I wonder how many people have to get this disease before we “get it” and do something differently? Are we going to allow this little bacteria to take us down because we can’t figure out a way to put patients first? I sincerely hope not. Right now it is looking like we might do just that.