“What’s in a name? That which we call a rose/By any other name would smell as sweet.” —William Shakespeare, Romeo & Juliet
Although not always described as separate illnesses, there are two distinct diseases called Lyme in our world today. The first is known as early localized or early disseminated Lyme. Public health authorities that it manifests in a straightforward, by-the-book manner: A person is knowingly bitten by a tick, removes the tick, gets a target-like rash and experiences symptoms that may be flulike, or which may include numbness and nerve pain, Bell’s palsy or other paralyses, and a rapid heart rate or breathing trouble. This person sees a doctor and, based upon the doctor’s familiarity with Lyme disease and other factors, the doctor prescribes doxycycline and the person moves on with his or her life. (I was this patient in 1997 at age 19.)
The second Lyme disease is most commonly known as “chronic Lyme.” It starts as early disseminated Lyme—often treated, sometimes not. Usually it goes away or improves significantly. And then, gradually, other “unusual” symptoms emerge. In some cases, as was the case with me, these symptoms are disparate and come and go in stages, and as a result neither the patient nor the doctor has an inkling of a notion that they may be related. In my case, for example, in my early 20s I had night sweats and frequent conjunctivitis, followed by a single event of what doctors in an ER thought might be meningitis (which improved with antibiotics); hearing loss and peripheral neuropathies in my mid-20s; sudden-onset panic attacks, numbness, breathing difficulty in my mid-late 20s; severe joint pain and coordination problems around 30; and finally an all-out variety pack of health problems in my early 20s that included cluster headaches, transient paralysis, vertigo attacks, double vision, dementia-like confusion, constant roving electrical shock-type pains, heat and exercise intolerance, daily hives outbreaks and more.
For over a decade, neither I nor any doctor I visited ever suspected that more than a couple of these symptoms may be related to one another. Despite the physical torture of the majority of these symptoms, the most disturbing in retrospect were the neurocognitive and psychiatric ones—becoming disoriented to the point of episodic dementia in one’s 30s is terrifyingly inexplicable for the patient and so unusual that very few doctors will accept the patient’s description of his or her own experience. Even as I repeatedly forgot mid-sentence what I was telling a neurologist in answer to his questions, and describing all this confusion, he was confident that all of this—the physical and mental challenges—was simply due to overwork and anxiety. A vacation, he said, was the answer.
(Read about Kris Kristofferson’s tragic Alzheimer’s disease that turned out to actually be treatable Lyme. Spoiler alert: He went from a terminal, degrading dementia diagnosis to being “like Lazarus coming out of the grave and being born again.”)
A Disease of Many Names
Early Lyme disease can be easily diagnosed, especially when a tick is attached to the body and tests positive for Lyme, or when the characteristic Lyme rash appears. (Importantly, early Lyme often is missed or dismissed for a variety of reasons. Read what happens.) There’s great contention over anything that follows unless it’s a full and permanent disappearance of all symptoms.
Chronic Lyme Disease is the most commonly used term of most patients and doctors who treat Lyme disease. It is preferred because in most cases it is applied to patients who present with Lyme symptoms that meet the diagnostic standards of the U.S. Centers for Disease Control and Prevention—the tick, the Lyme rash, the specific symptoms, and/or two positive Lyme disease blood tests...and yet, despite treatment with two to four weeks of doxycycline, many of the original symptoms persist or worsen, and are over a matter of months to years amplified and joined by other neurological, arthritic and psychiatric symptoms consistent with Lyme disease. It is absolutely known and uncontested that untreated Lyme disease progresses in this way in the human body—very much like Lyme’s cousin syphilis—yet most health authorities, including the U.S. Centers for Disease Control and Prevention (CDC), insist that the persistence and worsening of symptoms among patients who have been diagnosed with and treated for Lyme disease cannot be due to active Lyme disease infection. And so they prefer another term.
Post-Treatment Lyme Disease Syndrome (PTLDS) is the CDC’s preferred term for Lyme patients who are treated and who continue to experience Lyme-like or other health problems. The CDC states that Lyme may damage human tissue beyond repair, and suggests that an acute Lyme disease infection may trigger an autoimmune reaction (although for some reason it uses quotes around “auto-immune,” suggesting a lack of faith in this or possibly in the notion of autoimmune illnesses, which is odd since they are on the rise throughout the world).
Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research. Clinical studies are ongoing to determine the cause of PTLDS in humans.
The problem with the term post-treatment Lyme disease syndrome is that it by definition concludes that treatment for Lyme disease is finished, over, complete. To the contrary, the war over Lyme that persists following treatment has everything to do with the reality that many Lyme disease patients who pursue further treatment—through prolonged courses of antibiotics and/or other approaches—improve. This may seem like a negligible point, but it’s vitally important. We can look at two different but in some ways similar diseases for comparison.
Example: HIV
Imagine a patient is treated for HIV with a short course of antivirals. During treatment and immediately following treatment, her blood tests revert to normal/average ranges, and her viral load becomes undetectable. We could say she is now in “post-treatment HIV” phase. So we discontinue the antiviral medication, and her health gradually fails. Her blood tests show that she is HIV-positive—but since she has already completed treatment, we must assume that she has been fully cured.
(No? Is that reckless? That’s how Lyme disease is viewed by the CDC, even when patients have Lyme-positive blood tests following treatment.) So this patient develops an array of severe systemic health problems that would be known as AIDS were she still HIV-positive...but she’s actually post-HIV according to this (il-)logic. Instead, she simply is experiencing post-treatment HIV syndrome. Does the CDC’s advice below, which is offered to PTLDS patients, apply to her?
Note that the above advice is not suggested to supplement ongoing management of persisting and worsening Lyme disease symptoms; it is prescribed as a replacement for Lyme symptoms. Many doctors follow these guidelines when patients who were diagnosed with and treated for Lyme return. Here are a few questions about this treatment that are rarely addressed:
- What if the course of antibiotics was too short to have been effective? For example, when I was treated at age 19, I was given 200 mg of doxycycline for 10 days—a standard treatment in 1997. Today, even the most conservative, rigidly limited treatment Infectious Diseases Society of America (IDSA) protocol recommends 200mg of doxycycline for 14 days. The guidelines of the International Lyme and Associated Diseases Society (ILADS) notes that “ Treatment regimens of 20 or fewer days of phenoxymethylpenicillin, amoxicillin, cefuroxime or doxycycline and 10 or fewer days of azithromycin are not recommended for patients with EM rashes because failure rates in the clinical trials were unacceptably high. Failure to fully eradicate the infection may result in the development of a chronic form of Lyme disease, exposing patients to its attendant morbidity and costs, which can be quite significant.” (Note that the IDSA guidelines were removed from the federal National Guidelines Clearinghouse in 2016 for failing to have been reviewed against current science for over a decade. The ILADS guidelines are accepted into and offered to physicians by the NGC—yet, without explanation, the CDC continues to endorse the IDSA guidelines and to make no reference to the existence of the ILADS guidelines, an apparent disagreement among brances of the U.S. Department of Health and Human Services.)
- What if the patient’s Lyme disease symptoms disappear after treatment, but then re-emerge later? In many such cases, patients are told by doctors that “Lyme doesn’t come back,” and any assumption by a patient that that patient still has Lyme disease symptoms is due to excessive worry, hypochrondria, or another illness. In many cases, patients are refused another Lyme disease blood test in such cases. An obvious missing logical link here is what if the patient’s early Lyme disease was effectively treated, but then the patient contracted Lyme disease a second time from another tick? In areas where Lyme disease is prevalent, a person who was bitten once by a tick probably lives a lifestyle that involves being outdoors or has other high tick-exposure risk factors (e.g., a pet that brings them inside, etc.). That person easily could be bitten by one, 10, or 100 more ticks and re-contract the disease. Yet in a great many cases, once a doctor has diagnosed and treated a patient for Lyme, that doctor will assume from that point forward that that patient has been cured forever. When a patient contracts the virus that causes chicken pox or oral or genital herpes, that person is forever infected with a latent infection. However, according to what we are told, Lyme disease is an infectious bacterial disease and, like strep throat, pneumonia or gonorrhea, a patient may require antibiotic treatments every time he or she contracts the bacterial infection. The exceptional view of Lyme disease that patients must be treated only one time, common sense would suggest, poses a risk that patients who are assumed to have been cured may have re-contracted the infection at a later time, and refused diagnosis and treatment, that patient’s infection then could persist to become a dangerous multi-systemic infection even as he or she is told that nothing physical is wrong and that all the symptoms are imagined or performed.
- What if no laboratory ever will determine that the patient who has Lyme disease has Lyme disease? This most-likely-to-be-contested question has firmly planted roots in reality, and yet I have never seen it discussed. Much of the criticism about the CDC-mandated two-tiered ELISA and Western blot Lyme disease blood tests relates to both tests’ sensitivities. The CDC claims that these tests are highly sensitive (in fact, the CDC suggests that Lyme blood tests frequently return false positives and that doctors should be wary of prescribing antibiotics to all patients who test positive, whereas some studies have shown that they may return negative results for roughly 50 percent of patients. (Virginia and Maryland now require by law that doctors or laboratories to inform patients who are tested for Lyme that these tests frequently return false negatives, which may encumber treatment and create long-term health problems as a result of untreated infection.) Yet in February of 2016, the Mayo Clinic discovered a new species of bacterium, Borrelia mayonii, that according to Mayo and to the CDC causes Lyme disease. Prior to this discovery, many speculated that other species of Borrelia beyond Borrelia burgdorferi may cause Lyme, and that the specificity of the blood tests to B. burgdorferi may limit Lyme diagnoses. A spokesperson for the CDC confirmed to me that the existing Lyme disease bloot tests do not detect B. mayonii infection; that, in fact, a test called “PCR is needed to specifically identify infection with B. mayonii (as opposed to B. burgdorferi).” This explanation is significant for at least two reasons: First, it is confirmation by the CDC that some cases of Lyme disease will never be detected by the ELISA and Western blot Lyme tests exclusively recommended by the CDC. Importantly, it also describes not only the usefulness but the necessity of the PCR test, which the CDC here states has not been cleared for use by the FDA, and which those who advocate for the two-tiered blood tests generally recommend against. The CDC spokesperson also noted to me that “At this time, the evidence suggests that the distribution of B. mayonii is limited to Minnesota and Wisconsin.” This means that patients in those areas are perhaps more likely than those in other regions to require PCR testing rather than relying on the CDC-recommended immunoblot tests. However, the question I have never seen asked and which seems glaring to me is—given that a new causative agent of Lyme disease was discovered just last year—one that will not return positive blood tests—why do we still assume that medical science knows all there is to know about Lyme disease diagnosis and treatment, and why do we assume that people who live in supposedly low-risk areas from the Southern United States to the American West Coast to Australia, and who complain of becoming severely affected by Lyme disease symptoms, cannot have Lyme disease because tests do not show Borrelia burgdorferi are common in those areas? If Borrelia mayonii was discovered by the Mayo Clinic in 2016, who is to say that Johns Hopkins researchers won’t discover Borrelia hopkinsii next year, or that the Australian government won’t one day discover Borrelia downunderii—all invisible to today’s common blood tests, all potentially disabling or deadly?
Example: Clostridium difficile
Now imagine a patient with Clostridium difficile (”C. diff.”), a “superbug” bacterium that infects half a million people each year, often acquired in hospitals. I only know about this crazy illness because just last month it nearly killed someone close to me—someone who does not have Lyme disease and who has not touched an antibiotic in many years. C. diff infects the intestines and it can be fatal. It is most often acquired by people who take broad-spectrum antibiotics, the type most often prescribed for minor bacterial infections of the sinuses, etc. Although it is a bacterium, it actually thrives when these antibiotics are prescribed to someone it infects because those antibiotics kill off the “good bacteria” in the bowels and give it an opportunity to multiply.C. diff., like (many argue) Lyme disease, is frighteningly resilient. It spreads through contact (It’s not airborne.), by way of spores that cannot be killed with normal household cleaners such as Lysol or Clorox wipes. The spores have to soak in pure chlorine bleach for three minutes to be killed. People who contract C. diff. can die from complications related to chronic diarrhea, as well as from a condition called toxic megacolon. C. diff. bacteria also produce two toxins, TcdA and TcdB, that can damage the intestines and cells.C. diff can be treated for many with antibiotics such as metronidazole and vancomycin or, as an alternative and more effectively, with a fecal microbiota transplant.Patients who are effectively “cured” of C. diff. with metronidazole or vancomycin succumb to further C. diff infections in 20-30 percent of cases. How is this possible? It is possible because the C. diff. bacteria, once introduced, can be put into check by the sufferer’s gut bacteria but often continue to be carried. Some of the bacteria survive antibiotic treatment, and the patients suffer relapse and require further antibiotic treatment.The CDC does not refer to these events as “post-treatment C. difficile syndrome.” It recognizes that patients may experience the re-emergence of bacterial infections and that patients respond to repeated antibiotic therapy.However, when Lyme disease patients are treated, their health improves, and then they experience a relapse of the same or worse symptoms—sometimes disablingly so—the CDC regards these cases as lost causes, as those who have permanent damage. And although many patients respond well to repeated antibiotic treatment, the CDC discourages this. This seems curious.The term “post-treatment Lyme disease syndrome” is problematic for the CDC because it continues to attribute the health problems directly to Lyme disease, even though the agency denies that persisting Lyme disease could be the cause. It is a problem for patients because it suggests that treatment has ceased, and that it should cease, case closed. This is not satisfactory to patients like me who became suddenly semi-disabled in my early 30s. Even with severely limiting health problems, being so ill at so young an age gives too many patients too much fight to simply give up as we are told to do. PTLDS is not a good enough name for what we experience.
CDC does suggest an alternative future classification that may be viable. It has no name yet, but the agency postulates that “tissue damage” and “auto-immune” problems that result from Lyme disease may be the cause of what it presently calls PTLDS. This alone in my mind warrants naming this condition something more distinctive and respectable than post-treatment Lyme disease syndrome.
If HIV causes AIDS, then perhaps Lyme disease causes ______________.
Currently the blank is filled in with a different term by different groups of people.
Those who suffer with Lyme disease most often say “chronic Lyme.”
Federal authorities at the CDC would say “PTLDS.”
Others have proposed other terms.
Multiple System Infectious Disease Syndrome (MSIDS) is the preferred alternative to chronic Lyme disease for some, including Dr. Richard Horowitz, a Lyme disease specialist who created the acronym. Until 2016, Lyme disease was the name of the manifestation of an illness caused by a single bacterium, Borrelia burgdorferi. In February of 2016, the CDC announced that a second species, Borrelia mayonii (named for its discoverer, the Mayo Clinic, with whom the CDC partners), had been discovered as a cause of Lyme disease. Another species of Borrelia (miyamotoi) causes severe illness that presents similarly to those of Lyme disease. This is particularly problematic because the currently approved Lyme disease blood tests may only detect B. burgdorferi, and not even all strains of it. And so people who present with Lyme disease symptoms but have negative blood tests typically are forwarded along to neurologists, rheumatologists, and often end up on antidepressants and anti-anxiety medications. These patients often are told that their illnesses are either not real or are psychosomatic/psychogenic, and those who have untreated infections may end up with fates similar to those who have untreated syphilis.
Part of the case for the term MSIDS is that it is not exclusive to B. burgdorferi—or even to Borrelia bacteria.
Ticks are disgusting. They’ve been called “nature’s dirty needles,” because they collect and transmit many pathogens, including those that cause Lyme disease, but also (the list is long) anaplasmosis, babesiosis, Colorado tick fever, erlichiosis, Heartland virus, Powassan disease, rickettsiosis, Rocky Mountain spotted fever, STARI, tickborne relapsing fever and tularemia.
But wait! There’s more!
A lot of people who have Lyme disease also test positive for and have some of the peculiar characteristics of bartonellosis, which include skin lesions that look remarkably like stretch marks, pressure pain in the soles of the feet, blurred vision, nerve pain in the hands, legs and especially feet, cognitive malfunctions, and in some cases severe neuropsychiatric symptoms that can resemble severe mental illnesses, but which typically resolve with antibiotic treatment. The CDC does not name ticks as vectors of this disease, but the Columbia University Medical Center Lyme and Tick-borne Research Center suggests they probably do. This Lyme patient, who has symptoms that are specific to Bartonella, believes it.
But wait! There’s more!
Lone star ticks also can pass along a carbohydrate called alpha-gal (You can’t make this stuff up.) that can trigger an autoimmune reaction in human beings that (You can’t make this stuff up.) makes them allergic to meat. John Grisham, author of The Firm, The Pelican Brief, The Client, etc., almost died from it.
If you thought it couldn’t get anymore bizarre or controversial, another strongly debated, polarizing disease has been linked directly to Lyme in recent research. Morgellons Disease is a strange illness through which fibers grow through lesions in the skin. Other symptoms common to sufferers of Morgellons overlap greatly with tickborne illnesses, including severe neurological and neuro-cognitive effects. Legendary musician Joni Mitchell has said her life has been devastated by the illness—which many public health authorities classify as “delusional parasitosis,” a mental disorder.
"Morgellons is a slow, unpredictable killer -- a terrorist disease: it will blow up one of your organs, leaving you in bed for a year," she continued. "Morgellons is always diagnosed as 'delusion of parasites,' and they send you to a psychiatrist. I'm actually trying to get out of the music business to battle for Morgellons sufferers to receive the credibility that's owed to them."
And yet, despite the classification as a mental disorder, laboratory studies of the disease have concluded that it is related to Lyme disease-causing Borrelia bacteria—while a 2012 CDC review concluded that “patients with this unexplained dermopathy may benefit from receipt of standard therapies for co-existing medical conditions and/or those recommended for similar conditions such delusions infestation.”
The most honest and the only firm declaration that can be made about Lyme disease co-infections may be that
MSIDS is a strong acronym because it encompasses the reality entirely ignored by standard diagnosis and treatment of Lyme disease: That many people who contract Borrelia burgdorferi from a tick—and many who don’t—also contract one or more other diseases that complicate diagnosis and treatment, and which in some cases may be life threatening. The MSIDS label suggests that “infectious disease” in general may be the root cause—not only one infectious disease—and also that these diseases affect multiple systems.American medicine is allopathic by tradition.
Allopathic doctors see each body part, each organ, and each infection of these as one single thing isolated from all others. A foot problem sends you to a foot specialist. The foot specialist knows what commonly affects feet, and like all specialists, s/he may prescribe physical therapy, surgery, or a pharmaceutical remedy. A heart problem is managed by a cardiologist—who will tell you what drugs to take and when you need surgery.Horowitz—and really all doctors who specialize in Lyme disease—is a holistic practitioner. In the U.S., this term for many has a woo-woo, New Age-y, magical-realism kind of connotation. What “holistic” actually means is that the body is one whole, interconnected system. Which—I hate to break it to you—it is. While the term has been maligned, all is really means is that your eye problem could potentially be caused by a number of different issues, from an infectious disease to a central nervous system problem. Here’s a specific example from my life.
- I saw a neurologist for a litany of problems, including temporary paralysis of my left leg, imbalance, occasional disorientation, and cluster headaches, blurry vision and occasional double vision. This neurologist looked in my eye. He said my right optic nerve looks blurry, which was “concerning.” He referred me to a neuro-ophthalmologist. I looked into lots of machines. He said that my right optic nerve margin looks blurry, and that that is concerning. He told me to come back in a year to find out if it is becoming worse over time, which may indicate a deteriorating disorder. I came back a year later. Nothing had changed—good news, he said. That means the cause is probably congenital and idiopathic. (This means, “you were born with it and we don’t know why.”) The cluster headaches, he said, would come back on and off for the rest of my life and there’s probably nothing that can be done about it.
- For my hearing loss and vertigo episodes, I was prescribed an MRI to rule out an acoustic tumor (Ruled out.), and then sent to an ENT specialist, who diagnosed me with Meniere’s disease and put me on a diuretic that didn’t improve my hearing or reduce the tinnitus or stop vertigo attacks.
- Years later, I saw a Lyme disease specialist. All these symptoms were familiar to this doctor. The doctor put me on a combination of antibiotics. Along with other severe symptoms, my vision problems have improved well enough that I can drive at night again, and I have not had double vision since the Lyme diagnosis. Among other tests no other doctor ordered was a tryptase blood test. This test was very high, suggesting (along with many other symptoms) that I have a mast cell activation disorder. Mast cell activation disorder/syndrome can profoundly affect the hearing and vision. It has also been linked to cluster headaches, a neurological condition for which a neurologist told me there is no known cause or treatment. Another reason to consider changing the term Lyme disease is because Lyme specialists are diagnostic detectives like TV’s Dr. House more than they are specialists for a single bacterium. Going all the way back to 1999, it has been known that Lyme disease bacteria can trigger mast cell degranulation, which releases histamine and other chemicals and causes allergic reactions. Lyme disease specialists may know this. You can bet that most other doctors, whether general internal medicine practitioners or specialists, do not.
The only problem I see with MSIDS as a label is that it implies an ongoing, active infectious disease, and it is possible (from what I know) that the CDC’s version of the story may be correct in some cases: Perhaps some people do effectively kill off any and every infectious pathogen acquired from a tick, but not before that infection was able to trigger a potentially lifelong autoimmune or neurological disorder. In such cases, having “infectious disease” in the name may be a bit of a misnomer.
Last year I spoke with Andreas M. Kogelnik, M.D., Ph.D., director of the Open Medical Institute, who is both an infectious-diseases specialist and a research scientist, and he referred to Lyme as a “neuro-immune” illness, which felt fitting—even though it leaves out the infectious disease aspect, the infectious disease does seem to wreak havoc, once it has passed the early localized stage, with both the neurological and immune systems. “Neuro-immune” isn’t a name per se, but if Lyme were renamed with one of those horrible acronyms (I live in Washington, D.C. I hate acronyms. Everything is acronyms. I digress.), then “NI” certainly has a place.In the end, I don’t have a recommendation for what to rename Lyme, but I do know this: A disease by any other name would be easier to treat because it wouldn’t carry the historic burden and stigma associated with chronic Lyme. There are people among the infectious disease medical community who are stridently, even aggressively reactive to the term chronic Lyme, and this comes at the great expense of patients who are suffering terribly with it.
When infectious disease doctors turn these patients away, it is incumbent upon someone in the medical community to uphold their Hippocratic oaths and identify the problem and treat it as best they can.
At the heart of the Lyme disease debate, I am loath to observe, are egos. Those who say that Lyme disease is fully understood and must be treated rigidly stubbornly adhere to decades-old research at the expense of patients’ wellness. Patients who claim to know better do know better in the sense that only they understand what is happening to their own bodies; however, many frustrated patients also are prone to conjecturing their own causes and etiologies that aren’t necessarily supported by research.
How do we solve this? I’d be foolish to think that I have the answer. But I do have two suggestions that I feel are grounded in reality:
- When tens of thousands or more patients complain of similar, life-affecting to disabling health problems, believe them. Anyone who ignores this is a fool who doesn’t understand that medical science, like all science, evolves as infectious agents evolve.
- Let’s give chronic Lyme a new name—because chronic Lyme patients are never, ever going to get the help they need and adequate research likely never will be conducted as long as the term “chronic Lyme” is used. Too many ambitious, ego-motivated public health officials, medical practitioners and researchers have dug in their heels in the chronic Lyme conversation—it doesn’t exist, they say, period, and we should not expect them to budge on this. Sticks and stones break bones, and words right now are causing unnecessary prolonged suffering. I don’t care what it is, but we need a new stigma-free term to motivate objective scientific investigation.
- Accept egotism. Borrelia burgdorferi was named for its discoverer, Willy Burgdorfer. Borrelia mayonii was named for its discoverer, the Mayo Clinic. Had Mayo, an organization that appears to have a close affiliation with the CDC, not discovered this bacterium—if a prominent Lyme disease researcher had instead, for example, would CDC embrace this new bacterium as a cause of Lyme? No one can answer that for sure, but I am inclined to believe not. My interest with respect to Lyme disease is in getting patients the help they need, and so if that means giving the “glory” of naming the disease to the CDC or even the IDSA, then so be it. If helping patients and protecting public health requires re-branding the disease after one of these organizations, then I can live with it. They can have the glory of a self-named disease, and then we can move on with helping sick people. A disease not just by any other name, but by the names of those who have the power to tear down their own rigid barriers and allow medical investigation to proceed.
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