Diagnosing Chronic Lyme Disease

by Brian Dunning
March 10, 2020

Controversy seems to be just about everywhere these days, even in something as innocuous as an easily treatable infection you can get from a tick bite. In this case we have claims from outside the medical community of a new and unrecognized form of Lyme disease, distinct from the familiar version, wrapped in conspiratorial claims that its existence is denied and suppressed by a dogmatic mainstream of scientists and doctors. Today we're going to point the skeptical eye at chronic Lyme disease, which you may have heard of, and may have heard that it's not a condition that everyone recognizes. We're going to find out who does, who doesn't, and why.

The typical skeptical treatment given to Lyme disease is that there are two kinds: real Lyme disease caused by a bacterial infection from a tick bite, easily treated and cured with a simple course of antibiotics; and so-called "chronic" Lyme disease, which is nonexistent, pseudoscientific, and diagnosed only in the world of alternative medicine. It turns out that this characterization is a false dichotomy. Both of these cases are real ones, but they occupy the extreme opposite ends of a spectrum. In between them lies a great deal of murkiness, and even some still-unanswered questions about the underlying science. To get started, let's lay a foundation with the basics of Lyme disease.

Lyme disease is named after Lyme, Connecticut where a number of children in the 1960s and 1970s developed some inexplicable symptoms, including arthritis-like joint pain, severe fatigue, headaches, various cognitive impairments, swollen knees, and usually a distinctive red bullseye-shaped skin rash. Then in 1982, a researcher named Willy Burgdorfer found that it was an infection by a spirochete bacterium transmitted by a tick bite. The disease was called Lyme, and the bacterium was named Borrelia burgdorferi. Since then we've discovered at least one other species of Borrelia that also causes Lyme disease.

As a bacterial infection, Lyme is almost always quite simple to treat with a course of oral antibiotics such as doxycycline, amoxicillin, or a few others. This effectively kills all the bacteria, and the symptoms disappear after a few weeks of treatment. And, ideally, that's it; you're cured and there are no lasting symptoms — just like curing most other bacterial infections.

However — and this is where the murkiness starts — what has emerged over the few decades that we've been treating Lyme disease is that for a small fraction of patients, the symptoms will persist, even after all the bacteria are killed. This can last anywhere from a few weeks to a few months, and a tiny number of patients have been found to still be symptomatic for as long as ten years. These cases are where we have the unanswered questions. Blood tests on these patients have not been able to find any evidence that they still harbor the bacteria, or any cause at all for their symptoms. It is still an active area of research. But it is absolutely acknowledged by the medical and scientific communities, and even has a name: Post-Treatment Lyme Disease Syndrome, or PTLDS. There's a lot we don't know about it; we're not even sure what the proportion of patients is who get PTLDS. It's probably around 10-20% who get it to some degree, but in some places where diagnosis is slower and patients are affected longer before beginning treatment, it could be as high as 50%. Data suggests that patients whose symptoms are worse when they begin antibiotic treatment are somewhat more likely to develop PTLDS, as are patients who delayed starting treatment. This is about the only interesting correlation that's been noted, but so far it hasn't helped provide any answers. For now, PTLDS remains untreatable and incurable; there's no bacterial infection so more antibiotics are pointless. Fortunately it (so far) appears to always fade away on its own, though taking months or even years in the worst cases.

So is PTLDS actually what people have who think they have chronic Lyme disease? Confusingly, there are two answers to this. The answer is yes, in the sense that some PTLDS patients — and even a few doctors — use the term "chronic Lyme disease" because it's out there and it's popular and it's what everyone's heard. A lot of people have never heard it called PTLDS, so they use the term they know. Unfortunately, when some skeptics make the blanket statement "There's no such thing as chronic Lyme disease" it understandably offends some legitimate PTLDS patients. And thus, we have an ugly (and unfortunate) adversarial relationship between some people on the sides of the skeptics and the sufferers.

However, the answer to whether PTLDS is really what chronic Lyme disease patients have is also no, because we now have guidelines to help doctors decide what's PTLDS and what isn't. In his 2018 book The Everything Guide to Lyme Disease, Dr. Rafal Tokarz, a researcher at the Center for Infection and Immunity at Columbia University, summarized these guidelines, and I'm paraphrasing him here:

1. To be diagnosed with PTLDS, you have to have actually had real Lyme disease confirmed by a blood test or a medical diagnosis;
   
   
2. You need to have completed the antibiotic treatment and had your symptoms improve as a result of it;
   
   
3. Within six months of beginning that treatment, you need to have developed the symptoms sufficiently badly that it affected your quality of life;
   
   
4. You cannot also have a disease with similar symptoms, such as fibromyalgia or chronic fatigue syndrome;
   
   
5. You cannot have an active infection, because then you have Lyme disease not PTLDS;
   
   
6. Your symptoms can't be otherwise explained by your doctor;
   
   
7. You can't have had similar unexplained symptoms before you had Lyme disease, because then whatever you have now is probably still that.

What these guidelines accomplish is twofold. First, they give a solid answer to the question of whether a chronic sufferer has PTLDS or not, requiring that they had real Lyme disease, were successfully treated for it, and then developed the symptoms of PTLDS and that those symptoms are not caused by anything else. Second, they leave no room in medical science for a mysterious Lyme-related condition called chronic Lyme disease. Either you have PTLDS, or whatever your complaint is has nothing to do with an infection from the Lyme bacterium.

And so, without any ambiguity, chronic Lyme disease is not a medical term and does not exist within medical science. But importantly, note that this only applies to the terminology; it certainly doesn't mean that chronic Lyme disease sufferers don't have some real condition. All we've done is rule out any relationship to Lyme disease.

This is why we don't treat reported cases of chronic Lyme disease with antibiotics, despite frequent patients demands for it. When there is no detectable level of bacteria, there's nothing for the antibiotics to treat. Therefore, all they can accomplish is to contribute to the problem of antibiotic resistance. Nevertheless, there are some doctors who do prescribe this — though it violates the standard of care. Within their community, they are called Lyme literate doctors.

One of the most obvious and telling red flags surrounding the purely pseudoscientific version of chronic Lyme is the phrase Lyme literate. Doctors, patients, and clinics describing themselves as Lyme literate are those who believe that mainstream medical science represents a closed body of knowledge that is insufficient to include their view that Lyme disease comes in a chronic form. Many refer to doctors who treat chronic Lyme as LLMDs, or Lyme literate MDs. You'll often hear terms like orthodoxy and dogma, weasel words used to imply that medical science consists not of the scientific method but of lockstep adherence to a set of doctrines and beliefs; thus, LLMDs are those brave mavericks willing to "challenge conventional thinking". It is a familiar narrative, one that is all too compelling to many people dissatisfied with diagnoses — of the lack of them — they've gotten from conventional doctors. Notice that the very phrase Lyme literate is a passive-aggressive attack against medicine, implying that doctors and scientists not persuaded by the chronic Lyme narrative are "illiterate" in the very field they study.

The typical treatment for chronic Lyme disease that Lyme literate doctors prescribe is long-term antibiotics, often even intravenous antibiotics. Such treatment is called seronegative, meaning the patient's blood shows no signs of the antibodies indicating the presence of the Lyme spirochetes. There is not even a theoretical benefit to seronegative antibiotic therapy, but there are substantial risks. Besides the most obvious risk of unnecessary antibiotics, which is the contribution to antibiotic resistant bacteria, long-term antibiotics are hard on your body. They can damage your gall bladder, and nearly always cause chronic diarrhea. When administered intravenously over a long term with the use of PICC lines or Hickman catheters — which is typical among LLMDs — infections can and do happen, sometimes even fatal infections, some of which are documented in the Further Reading suggestions at the bottom of this page.

So what do patients with a diagnosis of chronic Lyme disease actually have? We don't know, and it could be one of many things. Complicating matters is that the primary symptoms — fatigue, non-specific pain, brain fog — are also the same as those for PTLDS, and are also what we call "symptoms of life". Human bodies get tired, mentally and physically. We get aches and pains. In many cases these can be terrible. There may or may not be something treatable that's causing it; they are simply things that happen to human bodies. And these are also the symptoms of fibromyalgia and chronic fatigue syndrome, conditions which are acknowledged as real but for which the cause and the treatment remain unknown.

But what's clear is that these patients are suffering and their quality of life is affected. They are not faking anything, it's not all in their heads, and they're not all anti-medical science conspiracy theorists. In most cases they're people just like you and me who find themselves painfully crippled by a set of very common symptoms, and are diligently looking for a solution to the best of their ability. In many cases it seems that patients seek a diagnosis of chronic Lyme disease because it has a standard treatment — antibiotics — which are a real drug. A real drug means real hope.

But while the patients themselves are deserving of all our compassion, the industry supporting chronic Lyme disease — especially the so-called Lyme literate doctors — are not. They know better. They profit from it, and have chosen to deliberately ignore the data showing their lucrative "treatments" deliver only risk and no benefit. And so really, at its core, chronic Lyme disease is little more than just another way alternative medicine predators seek to separate the hopeful from their money.

By Brian Dunning
Follow @BrianDunning