Chronic Lyme disease: Fake diagnosis or pseudo-diagnosis, NOT fake disease

Today, I’d like to do something a bit different than what I usually do, and that’s to take a step back and discuss how an experience in the weeds on Twitter a couple of weeks ago that that led me to start to think about a term that we frequently use or, more specifically, rethink that term. The term to which I refer is “fake disease,” and my rethinking started innocently enough, with me doing what I do sometimes on Twitter: responding to the promotion of quackery by—who else?—Dr. Mehmet Oz, who was promoting chronic Lyme disease quackery:

Yes, big surprise, last week Dr. Oz was promoting the quackery that are treatments for chronic Lyme disease, and my response was to call chronic Lyme disease a “fake disease.” I’ll elaborate a bit more in a moment, but for the moment it suffices to point out that we refer to chronic Lyme disease as a “fake disease” because there is no evidence that the symptoms patients diagnosed with chronic Lyme disease suffer are, in fact, due to the tick-borne spirochete that causes acute Lyme disease. What chronic Lyme disease advocates and “Lyme literate” doctors claim is that the symptoms these patients experience are due to chronic persistent infection with B. burgdorferi or other Borrelia species of bacteria that can cause Lyme disease, and that long term antibiotics (as in months or even years of antibiotics) is the treatment. As we’ve pointed out time and time again, though, there is no evidence that chronic Lyme disease/infection exists, and several randomized clinical trials that show very clearly that long term antibiotics do not help and can cause harm. It is, of course, not surprising that prolonged courses of antibiotics can cause harm. They decimate the normal flora of the colon and other niches where bacteria live on the body while selecting for resistant bacteria.

That’s why the CDC, the NIH, the Infectious Diseases Society of America (IDSA), the American Academy of Pediatrics, the American College of Physicians, and the American Academy of Neurology all reject the notion that “chronic Lyme disease” is a scientifically and medically valid diagnosis and that long-term antibiotics are an appropriate treatment. Over a dozen international organizations, like the Canadian Public Health Network, and the European Federation of Neurological Societies, concur.

With that knowledge in the back of my head, I didn’t really think that my Tweet would garner much, if any, reaction, as it just didn’t seem too controversial to me. Then Dr. Jen Gunter retweeted it, which exposed it to a much larger audience than I’m accustomed to. Twitter, being Twitter, this predictably led to a lot of angry people Tweeting at me or subtweeting my original Tweet. Here are some examples:

This is what I like to refer to the fallacy of future vindication.

I do so love the “pharma shill gambit,” but let’s continue:

Yes, I do have bad reviews on those doctor review sites, but I haven’t been able to find one of them that, as far as I can tell, was actually one of my patients. Why do I say that? Simple. There are various “tells” and dead giveaways, such as mentioning that I mentioned my blog to them. Basically, I never discuss my blog with patients unless the patient brings it up first, and when that happens I only do it reluctantly. I also can’t help but note that posting bad reviews on doctor review sites is a tactic of the antivaccine movement to harass and intimidate doctors who speak out against their pseudoscience.

In any event, you get the idea. A lot of chronic Lyme disease patients were very unhappy at my characterization of chronic Lyme disease as a “fake disease”. Many of them viewed the term “fake disease” as a direct attack on them, an insinuation that they were hypochondriacs or that their symptoms weren’t real. In the intense world of Twitter, where it’s frequently “Tweet first and ask questions later” and the pithy, biting comment is valued more than it should be, it’s easy to fall into the trap of going for memorable sarcasm, and I appear to have done that. After all, far be it for me (or, I daresay, any of the bloggers here at SBM) to deny that patients with chronic Lyme disease experience symptoms ranging from mild to severely debilitating. The message that we as advocates of science-based medicine trying to promote is that, whatever is causing those symptoms, it’s not what “Lyme literate” doctors claim it is. It’s not persistent infection with B. burgdorferi or other Lyme-associated spirochetes after the initial Lyme infection is treated with antibiotics, and treating people with long term antibiotics for months or even years does not help them and can definitely hurt them.

That’s why I’ve reconsidered and will no longer use the term “fake disease” to describe quack diagnoses like chronic Lyme disease. Instead, henceforth I will use the term “fake diagnosis” or “quack diagnosis” to describe these terms. Now, I can hear the more “militant” and “reason-based” of you out there making like Picard in a facepalm meme and asking, “What the heck is the difference?” Certainly, that’s your prerogative, and—who knows?—you might even be right. But hear me out before dismissing me as going all wobbly.

What is “chronic Lyme disease”?

It’s probably worthwhile here to discuss Lyme disease and its treatment. Lyme disease, as you probably know, is the most common tick-borne infection in the Northern Hemisphere. In the US, it is caused by B. burgdorferi, while in Europe multiple spirochetes (e.g., B. afzelii, B. garinii, B. burgdorferi) can cause it. Lyme disease is a complex infection and has a number of objective signs after one is bitten by a tick harboring Lyme-causing spirochetes, the most common of which is erythema migrans, which is seen early in the infection in about 80% of Lyme disease cases and sometimes called a “bull’s eye rash” because that’s what it often looks like. Even if it doesn’t look like that, it’s still a characteristic expanding rash. Other early symptoms can include fever, fatigue, and headache, while more advanced symptoms can include neurologic symptoms, joint pain and stiffness, severe headaches with neck stiffness, and cardiac symptoms such as palpitations. All of these symptoms usually respond well to conventional antibiotic therapy. However, as noted in a New England Journal of Medicine (NEJM) Current Concepts article:

Despite resolution of the objective manifestations of infection after antibiotic treatment, a minority of patients have fatigue, musculoskeletal pain, difficulties with concentration or short-term memory, or all of these symptoms. In this article, we refer to these usually mild and self-limiting subjective symptoms as “post–Lyme disease symptoms,” and if they last longer than 6 months, we call them “post–Lyme disease syndrome.”

It’s true. There is a subset of patients who’ve been treated for properly diagnosed Lyme disease who still have symptoms that persist months or years after treatment, perhaps 10-20% who will develop chronic symptoms of fatigue, muscle aches, poor sleep, and cognitive fog, hence the term post-Lyme disease syndrome. What cause of these symptoms remains poorly understood. Perhaps they’re sequelae of inflammation or an activation of the immune system, or perhaps they’re due to another cause that was triggered by the acute infection. We don’t know yet. What we do know is that there is no convincing evidence that these symptoms are due to persistent B. burgdorferi infection or that long term antibiotics are required to eradicate the disease. Sure, “Lyme literate” doctors point to anecdotes of sometimes-dramatic improvement after long term antibiotics, but anecdotes are one of the lowest forms of medical/scientific evidence, and multiple well-designed clinical trials have failed to demonstrate that longer courses of antibiotics relieve these patients’ symptoms.

The article also echoes the CDC and NIH in pointing out that many patients diagnosed with “chronic Lyme disease” have no evidence of having or ever having had Lyme disease in the first place:

The diagnosis of chronic Lyme disease and its treatment differ substantively from the diagnosis and treatment of recognized infectious diseases. The diagnosis is often based solely on clinical judgment rather than on well-defined clinical criteria and validated laboratory studies, and it is often made regardless of whether patients have been in areas where Lyme disease is endemic.6,7 Although proponents of the chronic Lyme disease diagnosis believe that patients are persistently infected with B. burgdorferi, they do not require objective clinical or laboratory evidence of infection as a diagnostic criterion.

Thus, for “Lyme-literate” MDs, naturopaths, chiropractors, and all manner of other dubious practitioners, “chronic Lyme disease” is a wastebasket diagnosis that “Lyme literate” doctors use for patients with unexplained chronic symptoms. The symptoms are real, hence my objection to the term “fake disease”, but the diagnosis is not based on science or any conventionally accepted reproducible diagnostic criteria. Yes, the NIH notes that there are studies showing that “B. burgdorferi may persist in animals after antibiotic therapy”, including in mice and nonhuman primates, but in the nonhuman primates the NIH noted that it was “not possible to culture these bacteria and it is not clear whether they are infectious.” Not surprisingly, “Lyme-literate” doctors point to these studies as evidence that chronic Lyme disease is a real entity caused by persistent infection with B. burgdorferi. Unfortunately, randomized clinical trials are where the rubber hits the road, and if chronic antibiotic therapy doesn’t improve the symptoms of patients diagnosed with post–Lyme disease symptoms or syndrome, it’s unlikely that the persistence of the Lyme spirochete is the cause of those symptoms, even if someday scientists demonstrate the persistence of B. burgdorferi in humans after standard treatment for Lyme disease.

Fake diagnoses: Beyond chronic Lyme disease

In light of my discussion above, I note that, yes, I’m aware that symptoms do not a disease make. How often do you or I have a headache that goes away, aches and pains, or unexplained fatigue that resolves, none of which are associated with a definable disease? It’s called living and getting older. We all experience these things from time to time, some of us more than others. I’m also aware that, although it might seem deceptively straightforward at first glance, defining just what a “disease” is can be devilishly tricky. I’m not going to go into the weeds of that discussion right here, other than to note that defining a disease is often the necessary first step to determining how to treat it. That’s why it’s so important to note that these patients with chronic symptoms have been labeled as having a disease. Whether the definition of that disease is supportable by science or not doesn’t matter in terms of the explanatory power that it has for the patient. The label assures them that someone is taking their symptoms seriously, as does the treatment associated with the label. That’s why so many of them react so strongly to an attack on their fake diagnosis as a fake disease.

I like the term fake diagnosis more than fake disease, because it’s such a generalizable term in pseudomedicine. I bet that, if you just took a minute to think about it, you could name quite a few other fake diagnoses. If you think about it more, you’ll realize that these fake diagnoses are applied to patients with real symptoms that are as yet unexplained. In my experience having studied these things for nearly two decades, I’ve concluded that, in addition to chronic Lyme disease, the most common fake diagnoses used by quacks include adrenal fatigue; chronic candidiasis; heavy metal toxicity (I still can’t believe that no one’s named a rock band after this); electromagnetic hypersensitivity (sometimes called EMF or Wi-Fi allergy); or deficiency of a nutrient or nutrients, my favorite example being orthomolecular medicine, a whole pseudomedical specialty constructed around testing as many nutrient levels as possible and then massively supplementing any “deficiencies,” whether the deficiency is real or not, whether it needs supplementing or not.

Like chronic Lyme disease, these diagnoses are vaguely and poorly defined, such that basically any patient with any set of puzzling and persistent symptoms can be shoehorned into one of these diagnoses. All of these conditions allow quacks to provide the illusion of “treating the cause, not the symptoms” and to exercise “individualization” of treatment so extreme that they can basically do whatever they want or, as I like to say, make it up as they go along. That same fetish towards “individualization” makes patients feel special and cared for more than a cold, standardized diagnosis and science-based, sometimes algorithmic, treatment or, even worse, lack of a definable diagnosis to explain their symptoms.

What’s the harm of fake diagnoses? Plenty!

What’s the harm of these fake diagnoses? you might ask. Plenty! First and foremost, the problem with placing a fake diagnosis on a set of symptoms that a patient is experiencing is that it can forestall proper medical investigation that might find the real cause of the patient’s symptoms. Indeed, Just such a patient stepped forward into the fray:

Her essay, Lyme Warrior No More, is well worth reading. Here’s a relevant excerpt:

For nearly 11 years, I told people I had chronic Lyme disease. It wasn’t true. Then I told people I had Post Treatment Lyme Disease Syndrome, but that can’t be true anymore, either. The one thing I know for sure is that I was a victim of “chronic Lyme” treatment. This consisted of false diagnoses, long-term antibiotics, and other inappropriate drugs and supplements, all based on dangerous pseudoscience.

People who identify as having chronic Lyme usually become entrenched in a cult-like support group community both online and in real life. These Lyme groups are echo-chambers for pseudoscience. They convince followers that they must see self-appointed and often secret “Lyme-literate doctors” (LLMDs) who will treat them for chronic infection. These groups empower their marginalized members with validation, support, and the ability to even treat themselves by comparing notes when there is no access to a LLMD. Their multiple conspiracy theories mirror those of the anti-vaccine community in many ways, and both movements overlap. As it is with cults, it doesn’t matter who you are or how educated you are, anyone can get sucked in. However, this community is disproportionately female. I suspect one reason is that more women report not being taken seriously by doctors, and perhaps many women have little choice but to look to the fringes for help out of desperation. Once you’re marginalized, vulnerable, desperately ill, entrenched in online pseudoscience and conspiracy theory echo chambers, and wooed by the nicest quacks you’ll ever meet, you’re a Lyme Warrior. If you or someone you love is a Lyme Warrior, then please learn from my mistakes.

Her doubts finally started to lead to her leaving the world of chronic Lyme disease quackery when she was told that her son had “congenital Lyme” based on his chronic pain and testing positive for Lyme by a “Lyme literate doctor’s” standards even though he tested negative by CDC standards:

After a few rough nights, I told my husband I was thinking about treating our son for Lyme, but I wasn’t sure if that was the right thing to do– I just couldn’t watch him suffer anymore. My husband had more doubts than me. He wondered if my son was mimicking my own illness he’d been witness to instead of it really being real. I wondered this, too. We decided to wait and talk to Dr. Anderson more. Dr. Anderson did a fantastic job of convincing me with perfect patience and compassion that congenital Lyme is pseudoscience. He also went out of his way to research for over a year until he finally figured out that my son had joints that grossly hyperextended (future contortionist?), which could cause this amount of pain and nightly pattern of pain while growing. Physical therapy was the answer. His pain stopped. Aszani Stoddard, on the other hand, was trying to convince me to treat him and referred me to a Lyme-literate nurse practictioner who treats children at Newbridge Clinic. I declined. She even appealed to my duty to protect my son from medical neglect. This was when I found myself Googling “is chronic Lyme disease real?” in earnest.

The result was that she found Lymescience.org, which led her to question her “Lyme literate doctors” even more and:

I reached out to friends, family, and even veterinarian coworkers with extensive knowledge about Lyme in dogs. I was shocked to learn that some people close to me knew this was quackery and didn’t speak up before I did, even feigning support. This was more upsetting to me than if they had argued with me about my illness really being Lyme, which feels like gaslighting for sick people. I watched my son get back to normal with no Lyme treatment. I felt myself getting better off antibiotics. I spoke with others online who are victims of chronic Lyme treatment. I left my integrative medicine doctor and found a traditional MD. I was no longer a Lyme Warrior.

My new doctor has never heard of the cult of chronic Lyme and stared at me in shock when I told her my story. She thinks my mysterious illness is partly damage done, and she is properly appalled that people think chronic Lyme is a real thing. I trust her to tell me the truth, even if it’s not what I want to hear, and I trust she’ll do it compassionately. When you’ve lost everything to illness, you build up a network of support in which to survive it. People who leave the chronic Lyme cult are often still ill, but now they’re without support to boot. They are even attacked by other Lyme Warriors for speaking out. Honestly, if my speaking out means I might indirectly save even one child from harm, then it is worth it. Being able to eat gluten again isn’t so bad, either.

Indeed. I realize that it must be horrible for these patients who have unexplained symptoms. There’s no doubt that we in medicine need to do better by these patients. However subjecting them to quackery is not the answer.

There are other stories of just this sort of phenomenon. Worse, the cult of chronic Lyme and “Lyme literate” doctors has political power. They’ve not only persuaded state legislators in some states to introduce bills mandating insurance coverage for long term antibiotics for chronic Lyme disease (and in some cases, like Massachusetts, passing them into law, legislators there overrode a veto by the governor so that insurers would have to pay for long-term antibiotic treatment) and protecting “Lyme literate” doctors from sanctions.

Fake diagnosis, not fake disease

This brings us back to the concept of referring to entities like chronic Lyme disease or adrenal fatigue as fake diagnoses or quack diagnoses rather than as fake diseases. I realize that some might view this as a minor matter, a quibble, but as a physician I do not. We at SBM started and continue this blog in order to protect patients from unscientific, ineffective, and potentially harmful medicine. Given that, I, at least, do not want to do anything that patients, even erroneously, interpret as attacks on them. It’s become clear to me that they do interpret the term “fake disease” that way. The term “fake diagnosis” or “quack diagnosis” however, directs the charge of fakery right where it belongs, at the quacks making the bogus diagnosis. The symptoms these patients experience are real. The diagnoses used by quacks to describe these symptoms are not. That is why I now refer to chronic Lyme disease and all the other similar “diseases” diagnosed by quacks as “fake diagnoses” or, if I want to be even more polite, “pseudodiagnoses.”

I’m under no illusion that a simple change in terminology will lead patients with fake diagnoses to be less hostile to science-based medicine. Nor am I under any illusion that medicine does anywhere near as good a job as it should deal with chronic symptoms that don’t fit easily into a specific disease. On the other hand, language matters, and there is utility in trying to be as clear as possible. Using the term “fake diagnosis,””quack diagnosis,” or “pseudodiagnosis” does help to remind me (and, I hope, others) to take the patient’s complaints and symptoms seriously even if I can’t explain them now and to put the blame for quackery where it belongs, on the quacks, by reminding myself (and, I hope, others) that it’s the quacks who make the fake diagnoses, not the patients and that the answer to helping poorly-understood symptoms is not pseudoscience.