Chapter 15: Jenga

Updated: 4 days ago

Sit Down Before Reading: A Memoir by Dave Bexfield


Theoretically, all doctors have taken the Hippocratic Oath. If you’ve never actually read it, or perhaps have the details fuzzy because you haven’t reviewed it in years, the minute diversion is well worth your time. It talks about exhausting “all measures required” to help those sick, urges “warmth, sympathy, and understanding,” and encourages collaboration to aid a patient’s recovery. It is a powerful oath of goodwill and healing.


I didn’t notice any asterisk, did you? It must have gotten accidentally cut off in the modern version or lost altogether in the Greek translation. Based on my experience and the ordeals of others I’ve since learned about, I’ve managed to faithfully restore the missing addendum.


*Unless a patient believes he or she has Lyme disease. Then vow to ignore, dismiss, and belittle those claims. And by all means, punt. You don’t want to touch that shit with a 10-foot pole. Give those hypochondriac bellyachers another test, and when it comes back negative, for God’s sake don’t treat them, and then congratulate yourself for sparing society any theoretical contribution to the threat of increased antibiotic resistance.


The original addendum actually was far longer than that, but for purposes of an oath said aloud, it had to get trimmed. If not, graduation ceremonies celebrating newly minted MDs would take days. Fortunately, a number of physicians have the asterisk memorized and regurgitate it frequently when Lyme disease is mentioned in the media. The op-ed response alone to Ross Douthat’s articles on his experience published in The New York Times—including the article that I attribute to saving my life—bears that out.


As a physician who treats Lyme disease, I would like to both commend and challenge Ross Douthat on his three columns dealing with his own alleged chronic Lyme disease. … He admits to testing negative for Lyme disease. Does he even have Lyme disease? In my work, I encountered many patients with other illnesses, such as fibromyalgia, chronic fatigue syndrome and various inflammatory disorders who were convinced that they had Lyme disease.


And another.


His claim of having Lyme disease is not consistent with either his clinical manifestations or his laboratory test results. While we are happy that his unexplained illness has resolved, it clearly was not due to Lyme disease. We are concerned about readers who might accept his story and pursue a similar course of potentially harmful (and expensive) regimens to treat nonexistent Lyme disease.

And another.


Symptoms of chronic Lyme disease are known to get less severe over time and may often disappear altogether. Thus, the “treatment” may have done nothing. A placebo. The tincture of time may have done the same thing.


When it comes to conflicting evidence concerning a negative Lyme disease test or failed treatment, there’s always an explanation from the medical establishment. Always. Because the standard testing is never wrong. Never. And the standard treatment of 2-3 weeks of antibiotics always works. Always.


“Doxycycline is an anti-inflammatory.” That had to explain the dramatic reduction in the swelling of my ankles.



“The placebo effect is powerful.” That had to explain the sudden gains in my upper and lower body strength.


“You had a lingering infection.” That had to explain the reversal of nearly all my bladder symptoms dating back a full decade.


“Happenstance.” That had to explain why the muscle relaxer that I had formerly needed to take three times a day for years to maintain some handle on my severe spasticity abruptly started causing my legs to flop around like wet noodles.

Positive home test for urinary tract infection (UTI)

“Must have just been a side effect of the UTI.” That had to explain the swift resolution of my lapses in sanity that had inspired 1 a.m. panicked texts about being committed to a mental institution.


This tower of new coincidences kept getting stacked atop the already swaying Jenga tower of coincidences built up over the last 17 years. The swollen knee? “Injury.” The dramatically elevated heart rate? “Stress from the MS diagnosis.” The painful wrist? “Tweaked.” The tick and the rash? “Misremembering.”


But the relapses I’d had over the years? Surely, that had to be no coincidence. That’s clear evidence of multiple sclerosis. Right? As I looked through my medical records and reviewed my blogs and posts about my three notable relapses, a pattern emerged. A curious one.


Dave using a walker after an MS relapse early in his diagnosis

The first was in March of 2008 when my wife and I visited Telluride with friends. I remember that trip mostly for its après-ski, in that I couldn’t partake as I wasn’t drinking at the time. Days later I was in full relapse—my first since my stroke-like symptoms in 2004—and blogged about crying for a solid 5 minutes on the kitchen floor. A week later, after a course of steroids, I was back to “normal,” quick for an MS relapse.


Then there was the fall 2009 Italy relapse when I woke to a pair of legs that overnight had lost all strength; they just crumbled when I rolled out of bed, forcing me to crawl to the bathroom. That led to the infamous tale of me getting to sit on the Pope’s toilet as onlookers watched on with mouths agape, no doubt thinking, er, holy crap. Fortunately, my legs swiftly regained enough strength for us to complete our vacation.


And let’s not forget my January 1, 2010 relapse when I couldn’t walk across my living room. When the timing couldn’t have been worse, as you may recall I had less than a month to relearn how to walk 100 meters without any aids to qualify for the NIH-sponsored stem cell transplant, almost certainly dooming my participation. But I recovered in record time to join the clinical trial.


What does a Lyme disease relapse feel like? Exactly like an MS relapse.


Before all three relapses I had taken antibiotics, specifically antibiotics that happen to attack Lyme disease. That’s the reason I couldn’t enjoy the free wine at our expensive B&B in Telluride, causing immense personal frustration. Then before our Italy trip, I had fallen, clunking down in such dramatic fashion that Humpty himself would have been proud as “I wiggled my toenail, and it LIFTED UP LIKE THE HATCHBACK ON A SUBARU OUTBACK.” I was prescribed antibiotics to prevent an infection that might arise during our travels. And for the third relapse, I had attributed my stunning turnaround entirely to the steroids and my PT sis’s grueling daily sessions. I now know better. There was a huge assist from the most commonly used antibiotic to treat Lyme disease, doxycycline.


My latest relapse, the one that shut down my legs and turned my bladder ornery, again arrived after antibiotics. Other than “just another coincidence,” if it wasn’t a steamrolling, Wile E. Coyote-flattening MS relapse, then what was it?


The Good Kind of Relapse

Spirochetes of Borrelia burgdorferi or Lyme disease
Photomicrograph of spirochetes; credit: CDC

Lyme disease is an infection characterized by its spirochetes (pronounced spy-row-keets), spiral-shaped bacteria similarly found in other nasty diseases like syphilis and relapsing fever. Antibiotics can kill these little buggers, but in doing so can trigger the body to revolt. This reaction potentially “manifests as fever, chills, rigors, nausea and vomiting, headache, tachycardia, hypotension, hyperventilation, flushing, myalgia, and exacerbation of skin lesions,” as this study describes. Me? I experienced overwhelming weakness and lack of bladder control, my two worst symptoms. This bodily revolt is called a Jarisch Herxheimer reaction, also known as JHR or simply Herxheimer, the verb of which is “Herxing,” at least to the cool kids.


The reaction, while decidedly icky, tends to be transient, lasting as little as a few hours, although with Lyme it can chug along for a week or longer. If you are going to rid your body of a spirochetal infection, it is a potentially unavoidable side effect, as up to 30% of patients experience the reaction. And a Herx is not an experience devoid of risk. In severe cardiac Lyme disease, where the spirochetes have compromised the heart, the introduction of antibiotics could trigger a life-threatening heart event necessitating constant monitoring.


It’s important to note, however, that Lyme “flare-ups”—which remarkably resemble MS relapses—can occur with or without antibiotics. Treating these flares usually is limited to over-the-counter medications, as high-dose steroids, the MS drug of choice to combat relapses, weakens the immune system, the exact opposite of what a Lyme disease sufferer needs.


Oh, lookie. That Jenga tower is teetering.


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Diagnosing the Diseases

MS is a disease diagnosed by elimination. Between blood tests, spinal taps, and MRIs, neurologists can usually weed out the mimics, conditions that may first appear to be MS.


“There are no specific tests for MS. Instead, a diagnosis of multiple sclerosis often relies on ruling out other conditions that might produce similar signs and symptoms, known as a differential diagnosis. … In most people with relapsing-remitting MS, the diagnosis is fairly straightforward and based on a pattern of symptoms consistent with the disease and confirmed by brain imaging scans, such as MRI.” —Mayo Clinic


The National MS Society goes into more detail, but generally makes the same points, steering patients to the 2017 revised McDonald Criteria for the Diagnosis of Multiple Sclerosis, considered the standard guideline for neuros to follow.


In contrast, diagnosing Lyme disease is regarded as more straightforward, as there is a blood test. According to Mayo Clinic, “lab tests to identify antibodies to the bacteria can help confirm or rule out the diagnosis. These tests are most reliable a few weeks after an infection, after your body has had time to develop antibodies.” It’s a two-tiered test. First up is the enzyme-linked immunosorbent assay (ELISA) test, which detects antibodies to B. burgdorferi. The ELISA, however, can trigger false positives or can miss a diagnosis in the earliest days of infection. If the ELISA is positive, a Western blot test is done to confirm the diagnosis. The WB looks for banding in the blood that is distinctive for Lyme disease. Of the 10 bands characteristically found with the disease, a patient must have at least five for a positive result.


If there is a type of Lyme disease that can perfectly mirror virtually every MS symptom, as well as critical diagnostic markers... and testing is unable to ferret out the difference between the two… Dear God.

As a diagnosis of multiple sclerosis can be fuzzy, MS specialists have long trusted other laboratory findings to reinforce their conclusions and to differentiate the disease from Lyme.


Lyme disease is often investigated during the initial evaluation of conditions such as multiple sclerosis, amyotrophic lateral sclerosis, dementia, or parkinsonism. Many patients facing these devastating diseases maintain hope for a curable diagnosis, such as Lyme disease; this optimism is bolstered by Internet resources supporting such notions. A critical point, however, is the highly focal geographic distribution of Lyme disease—none of the aforementioned neurologic diseases are unique to areas with high Lyme disease transmission. Furthermore, Lyme disease is readily distinguished from these conditions on clinical grounds. Patients with Lyme disease do not exhibit the white matter plaques seen on imaging of patients with multiple sclerosis, for example, and when patients with Lyme disease have oligoclonal bands in their cerebrospinal fluid, they are actually reactive against B burgdorferi. —Lyme Disease, Authentic Imitator or Wishful Imitation? Michael T. Melia, MD, et al, Division of Infectious Diseases, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland


This is the general, prevailing thought of the medical community. “Readily distinguishable.” Desperate patients turn to the internet to seek out a “curable diagnosis,” never an accurate one. For a 2015 presentation sorting out the differences between the diseases, a leading neurologist and specialist in both Lyme disease and MS calls the diseases usually “easy to tell apart.” Even when there are conflicting markers, there still are nuanced differences, these specialists tell themselves, that they can use to suss out the differences. For instance, in North America, Lyme disease doesn’t usually present with oligoclonal banding in the spinal fluid (it’s far more common in Europe). Banding strongly suggests MS. Meanwhile, the typical brain lesions caused by Lyme disease usually appear more ragged than those found in MS and are found in different areas of the brain. And then there’s the blood test for Lyme disease, the final arbiter in the diagnosis decision, their results stamped and approved by the CDC and countless other public health organizations worldwide.


Brain lesion due to MS on MRI
MS lesion seen on MRI; credit: James Heilman, MD

But when it comes to neurological forms of Lyme disease, the answers get more vexing. Columbia University, a leading research facility for Lyme disease, discusses the challenges of diagnosis and “…not everyone with Lyme disease will test positive on currently available tests (e.g., only 70-90% sensitive in neurologic Lyme disease).” But it’s not just the blood tests. “If the CSF is being examined as part of the differential diagnosis with multiple sclerosis, the neurologist is also likely to order other tests, such as an assay for oligoclonal bands. Unfortunately, patients may have neurologic Lyme disease but test negative on the Lyme index.” The uncertainty extends to the gold standard: “MRI images in Lyme disease may appear similar to the demyelinated areas seen in the ‘white matter’ of the brain MRI of patients with multiple sclerosis.”



For reference, I had—and still have, backed (pun intended) by three spinal taps—9 oligoclonal bands in my spinal fluid, enough to field a nervous system Lollapalooza. My brain MRIs, nearly two dozen, have been reviewed by some of the world’s leading MS researchers including at the NIH, as I’ve participated in no fewer than five clinical trials for multiple sclerosis. No red flags. And of course, all of my CDC-supported tests for Lyme disease have returned an unambiguous “negative” result, with at most two positive bands. Five bands are required for a confirmed Lyme disease diagnosis.


Suddenly, “readily distinguishable” and “easy to tell apart” aren’t the comforting assurances of the now clearly murky diagnosis of the disease called multiple sclerosis. Because these two mimics can present so similarly, accurate testing for Lyme disease takes on a huge mountain of importance.


By all appearances (barring a Nobel prize for my potential discovery that doxycycline fixes MS), my “negative” Lyme test results were wrong. Disastrously wrong. Catastrophically wrong. If there is a type of Lyme disease that can perfectly mirror virtually every MS symptom, as well as critical diagnostic markers—all the way down to brain and spinal lesions, spinal fluid banding, and relapses—and testing is unable to ferret out the difference between the two….


Dear God.

Dave at a building in ruins

Tests form the backbone of eliminating Lyme disease from consideration when diagnosing MS. The Jenga tower of coincidences in my case, its growth unsustainable, isn’t just teetering. In the coming pages, it is going to epically collapse, turning decades of settled science in MS and Lyme disease research into a chaotic pile of rubble.


But in that very debris field there portends hope, as the building blocks of research remain relatively unscathed. Once erroneous cases of Lyme disease misdiagnosed as MS are removed from consideration, in particular neurological forms of the disease, the diagnosis of multiple sclerosis rapidly will become more accurate, the treatments instantly more effective than originally thought. And for Lyme disease, the urgency to better diagnose and treat those infected will be elevated to the global crisis that it has long been, fueling science to meet the challenge buoyed by the support of increased federal funds and public backing.


Doctors, better dig out your hardhats; there is restoration work to do.


building in ruins

 

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Part I: Preface

Chapter 1: Sit Down Before Reading

Chapter 2: 100 Meters

Chapter 3: Operation Overturn

Chapter 4: The Widow Maker

Chapter 5: Pit of Despair

Chapter 6: Breaking Brain

Chapter 7: Final Hail Mary

Chapter 8: Checkmate

Chapter 9: Fate, Meet Destiny


Part II: Introduction

Chapter 10: Zebra Found

Chapter 11: Crazy Not Crazy

Chapter 12: Roll of the Die

Chapter 13: Joyrified

Chapter 14: A Nobel Act

Chapter 15: Jenga

Chapter 16: Never Ever

Chapter 17: Ipso Facto

Chapter 18: Taking a Stand

Chapter 19: The Writing is on the Wall

Chapter 20: Clear Eyes, Full Heart (coming 9/28)