COVID-19 long-haulers and Lyme disease patients share similar frustrations

As I was reviewing an opinion article by Pooja Yerramilli, a resident physician in the global medicine/internal medicine program at Massachusetts General Hospital in Boston, I recognized the frustrations expressed by COVID-19 patients, as many of my Lyme disease patients have found themselves in similar situations.

COVID-19 long-haulers can individuals with Lyme disease can share frustrations.  “I have all the symptoms of a COVID-19 long-hauler — but I’m hesitant to identify myself as one,” writes Pooja Yerramilli in StatNews.¹ His symptoms were typical of patients with COVID-19. “The relentless dry cough and fatigue were followed by shortness of breath.”

But his test was negative, and he was not diagnosed with COVID-19.

“My mentors, also physicians with whom I had informally consulted, were concerned that mine was a false negative test; at the time, the sensitivity of the swab was thought to be around 70%.”

He added, “But my chart was never flagged as “CoV-positive,” so my story was never counted in the growing statistics of employees affected by the disease.”

His symptoms persisted. “The remaining symptoms — weakness, muscle aches, and low energy — were nonspecific, subjective, and, therefore, things I could surmount.”

His doctors diagnosed him with other conditions. “Some providers definitively labeled it as postnasal drip, others said it was new-onset asthma. My colleagues and I settled on post-viral bronchospasm.”

He found it difficult to work. “After working several shifts, I found myself unable to get out of bed one morning: the aches and fatigue were taking over.”

Doctors appeared to doubt his illness. “Provider after provider unknowingly put me on trial, poised to accuse my body of falsification, and interrogate it to discover alternate explanations.”

He suggested changes in medicine based on his own experience. “Instead, perhaps we ought to humbly admit uncertainty and maintain the openness and curiosity required to ask the right questions.”

He was fearful of being dismissed. “I apologized for potentially wasting their time, as there might not be anything wrong with me, echoing the hesitancy of many women who are dismissed and fearful of being labeled as anxious or hypochondriacs.”

He settled on a diagnosis other than COVID-19. “Four months into my ‘illness,’ no closer to any answers, I settled on ‘deconditioning, NOS’ [not otherwise specified]. If I took the right precautions — sleeping nine hours a night and dragging a chair around on rounds — I could last through the workday. … I was given no clear diagnosis or treatment plan.”

Clinicians are prone to attribute these unexplained illnesses to psychiatric causes. “Namely, we assume that their symptoms are psychologically driven, perhaps implicitly by stress and explicitly by secondary gain, the advantages and attention one receives from others when physically ill. It is difficult to accept long-haulers as a group that warrants our attention.”

He was unable to continue working. “My medical career of over 43 years is now over, and I have resigned from my jobs I loved so much. I could not, in good conscience, chance that my once good memory that fails me so often now, might not remember all that I needed.”

He was concerned with needless suffering. “But this mindset allows clinicians to write off the symptoms of those in the NOS category and, in doing so, heighten their suffering.”

COVID-19 and Lyme disease patients share similar frustrations, as highlighted in this article. They include:

1. The patient was not diagnosed in the absence of a positive test.
2. The sensitivity of the COVID-19 test is low.
3. His doctors diagnosed him with other conditions.
4. Doctors appeared to doubt his illness.
5. He was fearful of being dismissed.
6. He settled on a diagnosis other than COVID-19.
7. The clinician’s tendency to assume these unexplained illnesses as psychiatric.
8. He was unable to continue working.
9. He was concerned with needless suffering.