What is a Lyme literate doctor?

Lyme literate doctor holding hands with patient.

Dr. Abigail Dumes addresses the question: “What is a Lyme literate doctor?” in a recent issue of Medical Anthropology. [1] She explains the disagreement in medicine between doctors over the symptoms of "chronic Lyme disease." One group described as "mainstream doctors" consider the symptoms to be due to a “medically unexplained illness.” While the other faction, known as "Lyme literate doctors" considers the symptoms to be sufficient evidence for a medical explanation.

In the Infectious Diseases Society of America (IDSA) guidelines, Wormser and colleagues initially dismissed Lyme disease symptoms as nothing more than the aches and pains of daily living.[2] A Lyme literate doctor would disagree.

That conclusion, however, has been undermined by findings from clinical trials, sponsored by the National Institutes of Health (NIH), which report patients with Lyme disease suffer from severe symptoms, poor quality of life, and a loss of function.

Additionally, other studies indicate patients diagnosed with Post-Treatment Lyme Disease Syndrome (PTLDS) exhibit ongoing pain, impaired cognitive function, severe fatigue, and poor function.

Although they may not agree on the cause, both groups of doctors are beginning to recognize that these patients, whatever they are labeled, continue to suffer from chronic illnesses.

Medically unexplained illnesses are often described as “syndromes characterized by multiple symptoms, significant suffering, and disability that fail to show consistent pathophysiology,” Dumes writes.

Lyme literate doctors have reached the same conclusion. For purposes of transparency, I have been viewed as a Lyme literate doctor.

[bctt tweet=”What is a Lyme literate doctor?” username=”DrDanielCameron”]

Dumes describes the divide between doctors over the diagnosis of Lyme disease. Mainstream doctors argue that the diagnosis is usually straightforward. A Lyme literate doctor would maintain that tests are often inaccurate and that chronic Lyme disease is a problem.

The article also describes the divide between doctors over treatment for Lyme disease. While mainstream doctors argue that chronic issues are due to a medically unexplained illness, a Lyme literate doctor would maintain that chronic symptoms may be due to active infection and patients should be treated with additional antibiotics if symptoms persist.

“Mainstream proponents argue that the bacterium that causes Lyme disease, Borrelia burgdorferi, does not persist in the body at pathogenic levels after standard antibiotic therapy,” the author writes.

On the other hand, “Lyme literate doctors consider Lyme disease to be a tick-borne pathogen that may require prolonged oral and intravenous antibiotics for a persistent infection.”

Symptom-based diagnosis

Doctors also differ in their approach to symptoms. “For the physicians who diagnose and treat these patients, how they approach their patients’ diagnosis depends in large part on the diagnostic value they assign to symptoms,” Dumes writes.

Mainstream doctors consider Lyme disease as another controversial diagnosis, such as hypoglycemia, Briquet’s syndrome, chronic fatigue syndrome, multiple chemical sensitivity, Gulf War syndrome, and somatization disorders, Dumes explains.

Mainstream doctors typically rely on objective criteria, such as the presence of an erythema migrans rash, seventh nerve palsy, heart block, Lyme arthritis, or a positive IgG Western blot test.

Meanwhile, “Lyme literate doctors embrace a symptom-based diagnosis at odds with Lyme’s conventional diagnostic paradigm,” Dumes writes.

The author cites a list of symptoms from the International Lyme and Associated Diseases Society’s (ILADS) working group: “fatigue, low grade fevers, hot flashes or chills, night sweats, sore throat, swollen glands, stiff neck, migrating arthralgias, stiffness and, less commonly, frank arthritis, myalgia, chest pain and palpitations, abdominal pain, nausea, diarrhea, sleep disturbance, poor concentration and memory loss, irritability and mood swings, depression, [and] back pain.”[3]

Mainstream doctor’s view of symptoms

The author reports two interviews that offer insight into the mainstream doctor’s view of Lyme disease symptoms.

First Interview

“Most Lyme patients are not difficult to diagnose and treat. Do you know the difference between a symptom and a sign? It boils down to subjective symptoms and objective signs. For example, arthralgia is the subjective experience of pain, and arthritis is an objective sign. Chronic Lyme patients only have nonspecific symptoms that are chronic. There’s so much evidence that this is related to psychological factors.”

Second interview

When asked to read a list of symptoms the doctor stopped and concluded: “These are exaggerated, nondescript symptoms that people read about and think, ‘Oh! They’re due to chronic Lyme disease.’ But a number of these symptoms should be put in the MUS [medically unexplained symptoms] category; they’re not due to Lyme or any other infection.”

Lyme literate doctor’s view of symptoms

The author reports an interview that offers insight into the Lyme literate doctor’s view of symptoms.

“It’s actually very easy: Lyme is a multisystemic disorder with a classic constellation of symptoms that include fatigue, headaches, joint, muscle, and nerve pain ([such as] tingling, numbness, burning, and stabbing sensations), and memory and concentration problems, as well as sleep and mood disorders.

“Also, people can feel better with antibiotics but then worse, [which is] called a Herxheimer reaction, when the bacteria is being killed off. And women often notice flare-ups of their disease with their hormonal cycle.

“One of the hallmarks of Lyme disease is that the symptoms come and go without any apparent reason. You have good days, you have bad days. Your joint and muscle pain tends to migrate: one day it hurts in the elbow; two days later, it hurts in your shoulder. … And the tingling and numbness, if you had carpal tunnel, it stays in your hands, right? … So migratory tingling and numbness that comes and goes and moves around your body with these migratory muscle pains and joint pains, very specific for Lyme disease.”

Divergence over interpretation of symptoms

“While both Lyme literate and mainstream physicians insist that Lyme disease is a clinical diagnosis, they diverge over the diagnostic validity of interpreting symptoms as signs,” writes the author. “Lyme-literate physicians embrace a symptom-based diagnosis at odds with the mainstream paradigm.”

“Although mainstream physicians criticize Lyme-literate physicians and CAM [complementary and alternative medicine] practitioners for attributing specificity to an ambiguous multitude of symptoms, Lyme-literate and CAM practitioners maintain that they are merely practicing more comprehensive medicine,” Dumes writes.

  1. Dumes AA. Lyme Disease and the Epistemic Tensions of “Medically Unexplained Illnesses”. Med Anthropol. 2019 Dec 20:1-16.
  2. Wormser GP, Dattwyler RJ, Shapiro ED, Halperin JJ, Steere AC, Klempner MS, Krause PJ, Bakken JS, Strle F, Stanek G, Bockenstedt L, Fish D, Dumler JS, Nadelman RB. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006 Nov 1;43(9):1089-134.
  3. Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014 Sep;12(9):1103-35.

5 Replies to "What is a Lyme literate doctor?"

  • Diana M Durfey
    08/09/2021 (10:09 pm)

    My husband has had over 30 tick bites over the past few years. He has never had a positive test but his symptoms worsen as the years and months go by. presently being treated for gouty arthritis with little success. steroids’ and gout medications help for a short time the symptoms come right back. Its debilitating

    • Dr. Daniel Cameron
      08/10/2021 (9:20 am)

      I have some patients with both gout and Lyme disease. I have encouraged my patients to include an evaluation with a doctor experienced in treating Lyme disease.

  • Athena Newsom
    03/09/2021 (9:03 pm)

    The infectious disease doctor I saw verified I tested positive for Lyme on two different tests. But, he said I couldn’t still be having symptoms bc it was an “old” infection. IOW, he didn’t dispute the infection was present, just that it had been untreated in my body too long to cause symptoms. I know I contracted the Lyme twenty years ago (tick was on me for days, rash, etc.) and suffered horrible symptoms immediately following (thought it was bad flu). Then, for the most part, but not completely, the symptoms waned. Four years ago I contract Herpes Simplex 1. I never had a fever blisters, but all hell broke loose all over my body. The initial Lyme disease symptoms returned, lapsed and then new symptoms (exactly like other Chronic Lyme sufferers have described). So, what is going on in cases like mine??? The infectious disease doc knows I tested positive . . . What does he mean by symptoms can’t go dormant and reemerge? Is that true? I’m so confused. And tired. I don’t even want to keep trying to figure this out. Thanks for listening.

    • Dr. Daniel Cameron
      03/10/2021 (8:14 am)

      A positive IgG typically indicates a viral infection has cleared. There are exceptions including AIDS. I find a positive IgG does not mean a tick borne infection is resolved.

  • Carmen Miller
    04/15/2020 (3:37 pm)

    So true hard to find a lyme literate doctor I need my brain to work in order to do tel med I have to remember how I do that or read if I can my head dam coinfections wow I would love a doctor that really know about the late stage after many bites . Never rash never knew how bad this was until I had to get treated to much in good health to do with main stream doctors they will never catch up unless they hear feel and see .

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