The controversy surrounding lyme disease is multi-faceted and complicated. The medical community is divided in two, half on the side that lyme is more virulent and pervasive then previously believed, and half on the side that says whatever is going on with these people, it cannot be lyme as the evidence does not support it. It is rare to see the medical community divided with stances so diametrically opposed.

Borelia Burgdorferi (Bb) which is now commonly referred to as lyme disease, was discovered over 40 years ago in Lyme, Connecticut, by Dr. Willy Burgdorfer when the children of that town were suddenly plagued with fatigue and rheumatoid arthritis-like joint pain. Dr. Burgdorfer’s work in finding Bb was truly impressive science, and a miracle for those children.

His research and the research that followed has led to the development of a protocol for treating lyme disease which adheres to the rigors of science, but is not standing up to the test of time. Protocol states that you must have a tell-tale “bullseye” rash, erythema migrans, which looks like two concentric red circles on the skin. The bullseye rash has become such a standard of practice that without it most doctors will not even consider or think of lyme as a possible diagnosis. But most of the recent studies show that the rash does not appear on all (or even most) patients. And what happens if the tick bites you on the head under your hair, or if the patient simply doesn’t notice the rash and waits too long to go in to the doctor? (FYI, the rash is temporary).

Next, all the research has showed that 30 days of doxycycline is all that is needed to clear the infection. This is absolutely true, if caught early and there are no other confounding issues then lyme is easy to treat in the acute phase. But here’s the rub: there are not enough studies that show what happens if the lyme is not caught early and is in the “late stage.” Also what if the tick had a different strain of lyme (there are many) or carried other coinfections as well? Other types of bacteria and parasites called coinfections (typically anaplasma, babesia, bartonella) are commonly found to ride together all in one tick, and each pathogen requires a different drug regimen and protocol. Furthermore, what if the patient had an underlying complication at the time of being bitten? For example, they were fighting a flu virus at the time and their immune system was otherwise occupied.

There are a litany of complications that create chaos when trying to standardize a protocol. Age, health, exposure to mold and toxins, lifestyle choices (do they smoke or drink?), and genetics all play a vital role in how our immune systems function. The immune system’s functionality is a key component with every individual presentation of lyme disease. Because of this one fact, lyme disease can look like MANY other diseases in regard to symptoms and autoimmune markers in blood work. In fact, lyme has been called “the great imitator” because depending on the individual it can manifest like rheumatoid arthritis, lupus, fibromyalgia, ALS, and even personality disorders. When you combine all those variables with the fact that there are hundreds of strains of lyme and coninfections, you have a recipe for disaster.

Finally, the proverbial nail in the coffin for us “lymies” (as we have come to call ourselves) is the lack of reliable testing. The blood test is testing for antibodies to Bb, which means you have to time it out just right. Oftentimes a doctor might suspect lyme, but if they test too early there are not enough antibodies present to test, and if they test too late when the body has had lyme for so long that it stops producing antibodies, you will get a negative result despite active infection. Since the test was negative, the doctor dismisses lyme disease as a possible diagnosis. There is a wealth of information out there that shows that the tests themselves are rather antiquated and faulty (here, and here), so even if you did time it correctly there is still a chance you will get a false negative.

In the echelon of scientific rigor, evidence is evaluated according to a pyramid of validity. The base of the pyramid, meaning the most scientifically sound, objective findings, are double-blinded randomized control trials (RCTs), followed by controlled trials, and all the way up to the tip of the pyramid, which means the least scientific because it is the most subjective, are case reports by the doctors. These are reports of actual patients the doctor sees and these findings on the individual are published. Usually case reports inspire the controlled trials. Patient testimonials—meaning what the patient feels and thinks—does not make it on to the scientific pyramid whatsoever. So if you were to create a medical protocol for standardized care, testimonials would have no place in that creation because they are purely subjective.

The problem with both “chronic” or “persistent” lyme, meaning they are still symptomatic despite getting standard treatment, and “late stage lyme”, meaning the diagnosis was missed during the acute phase, is that the standardized science is lacking. There simply are not enough RCTs to account for this patient population. There is not much by way of hard science, but there is myriad of case reports and patient testimonials. As for patient testimonials, we are legion. I’m talking in the millions worldwide. But the calls of our suffering are falling on deaf ears because it is subjective. That leaves us the patients, the victims of circumstance, floundering in a deep black hole of medicine.

All of the variables leave us lymies open to exploitation. Exploited by charlatans claiming to have “the cure” but are only after our money. Exploited by ignorance—doctors that truly want to help us but are not given the tools with which to do so. Exploited by society that doubts us because we cannot “prove” our illness and we do not look how they deem sick people should look (just look what Yolanda Hadid has had to endure). This is injustice to the extreme. All the while we are too sick to fight, exploited by our own bodies that have turned against us.

Lyme disease is medical purgatory.

But there is hope. While the government is no longer funding research to lyme, private institutions and Universities are (see this video for more information). Lyme sufferers have teamed up with lobbyists to make law changes that protect the doctors brave enough to treat lyme outside of protocol. Up till very recently, doctors (like Dr. Jemsek) that saw the standard lyme protocol was not working and set out as pioneers (now referred to as “lyme-literate doctors”), were persecuted by insurance companies and medical review boards for “over-prescribing” antibiotics. So much so that the doctors that would have been willing to try new protocols were afraid to do so. These new law changes that protect lyme literate doctors are revolutionary to our cause. As it is, though, it is really only safe to practice lyme-literate protocols in Washington and New York, but this does not protect the doctors from insurance company backlash (they do not like to pay out money, so they are happy to audit doctors that work outside protocols and get ALL of “their” money back).

In summary: Why is there controversy? A lot of reasons. I did not address any of the conspiracy theories, but those are out there too and quite plausible. Typically late stage lyme disease patients can get misdiagnosed with ALS, fibromyalgia, Crohn’s disease, dementia, and even bipolar disorder, which means a lifetime of medications. This means untreated lyme disease is a cash cow for big pharma. But we do not need to look to conspiracy theories to uncover the dilemmas in treating lyme disease. What we need is awareness from the public. An outpouring DEMAND for more research. What we NEED is good, objective evidence that allows this disease to be treated like any other disease (like cancer). We also need some good old-fashioned common sense. Claiming that a vector-borne illness will stay within the borders of a state is ridiculous. Deer and birds (the carriers of ticks) do not recognize boundaries created by governments. The warmer the climate gets, the better for ticks to thrive, multiple, and move. To dismiss a disease based off of the idea that is should only be endemic to one area is pure nonsense. To dismiss a diagnosis based off of one faulty, unreliable test is pure nonsense. And logic dictates that when dealing with a bacteria or parasite—a living creature whose very nature is to adapt to survive—we have to continue to evolve our thinking, reasoning, and testing. In the world of medicine AND in nature, pathogens adapt and evolve, and if we do not break free and adapt with it, we are doomed as a species.