Dr. Daniel Cameron: Inside Lyme Podcast

Lyme pain

Welcome to another selection from my book “An Expert’s Guide on Navigating Lyme disease.” The books highlights the findings of my first 600 Lyme disease Science blogs.  In this episode, I will discuss Lyme pain.

Reported pain associated with Lyme disease includes headaches, eye pain, neck pain, chest pain, abdominal pain, bladder pain, joint pain, and neuropathy. More recently, central sensitization syndrome (CSS) has been described. Pain medication may not be as effective as when used for other illnesses. Thankfully, pain often improves upon successfully treating Lyme disease.

Central sensitization syndrome and Lyme disease.

Chronic pain, debilitating fatigue, and heightened sensory disturbances are common in Lyme disease patients. In the article “Post-Treatment Lyme Syndrome and Central Sensitization,” it is suggested that in some cases, such symptoms may be due to central sensitization syndrome (CSS) (Batheja et al., 2013). Central sensitization syndrome (CSS) involves changes in the central nervous system, particularly the brain and spinal cord. This syndrome “is thought to involve hyperactivation of central neurons, leading to various synaptic and neurotransmitter/ neuromodulator changes” (Batheja et al., 2013).

“Notably, in relation to Lyme disease, infections, in general, are known to activate central sensitization in some patients, possibly through the release of inflammatory cytokines,” Batheja points out. Read more.

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Lyme presenting as abdominal pain in a boy.

At age 8, a boy was hospitalized for severe abdominal pain and underwent extensive testing, but the results were negative. His abdominal pain remitted over the next two months (Savasta et al., 2020).

One year later, the boy was admitted with learning difficulties including attention deficit, difficulty speaking, irritability, and difficulty walking due to an ataxic gait.

He was diagnosed with abdominal neuroradiculopathy. Additional laboratory and radiological findings confirmed the diagnosis of late Lyme disease.

He was treated with six weeks of oral and IV antibiotics. Three months after treatment, the boy’s gait and scholastic performance had improved and entirely resolved after one year. Read more.

A woman with a history of Lyme with pain refractory to treatment.

Lyme disease patients often suffer from ongoing illness following treatment. A study found that 31% of patients remained in significant pain for months after a three-week course of doxycycline to treat an erythema migrans rash (Bechtold et al., 2017).

Researchers describe a 31-year-old woman with Post-Treatment Lyme disease Syndrome (PTLDS) “whose pain was refractory to treatment options such as radiofrequency ablation, vitamin infusion therapy, opioid analgesics, and other pharmacotherapies.” Her pain began gradually, three years prior and a short time after being diagnosed and treated for Lyme disease. “The patient complained of diffuse body pain (6–7/10), fatigue, headache, and brain fog (7–8/10)” (Hanna et al. 2017).

The patient was prescribed off-label Ketamine for pain, reducing her pain by 71%. Read more.

Breast cancer patient develops Lyme disease.

A 61-year-old woman was diagnosed with stage II breast cancer with lymph node metastasis. She underwent a lumpectomy, followed by chemotherapy, radiation, and anti-estrogen treatment, letrozole.

One year later, the woman complained of radicular leg and back pain followed by a foot drop on one foot and right-sided facial palsy in two weeks. Moreover, she was in severe pain despite narcotics.

A spinal tap was performed due to unexplained neurologic findings. Lyme disease tests by blood and spinal fluid were positive.

She was diagnosed with Lyme disease and treated with intravenous ceftriaxone for 14 days. As a result, she became pain-free despite her history of severe pain despite narcotics. Read more.

Lyme presenting with severe neuropathic pain.

A 36-year-old man suffered from a chronic pain syndrome associated with Post-Treatment Lyme Disease Syndrome (PTLDS) (Karri and Bruel, 2020). The doctors did not offer antibiotic treatment.

The patient described severe neuropathic pain in both feet and categorized the pain at a level 10 out of 10 despite treatment with methadone 5 mg every 4 hours as needed. The doctors assumed that the tick-borne infection had resolved, and elected not to treat it with antibiotics.

Instead, they treated the patient’s symptoms. The pain remained severe despite trials of gabapentin, duloxetine, bupropion, and narcotics. Two surgical procedures were performed, which improved the patient’s pain.

Author’s note: I might have retreated with an antibiotic. Read more.

Lyme disease case with severe pain for 9 years.

In an article published in Saudi Journal of Anaesthesia, doctors describe the case of a 23-year-old woman who suffered from severe chronic pain for 9 years due to post-treatment Lyme disease syndrome (PTLDS). Her pain intensified and became more difficult to manage after she underwent dental extractions and required hospitalization.

Out of 19 symptoms associated with Post-Treatment Lyme Disease Syndrome (PTLDS), 9 were especially significant and included fatigue, joint pain,  focusing/concentration, muscle pain, memory, finding words, sleep, neck pain, and irritability. The remaining symptoms were paresthesias (tingling sensations), low back pain, headache, photophobia, dizziness, visual clarity, chills, coordination, sweats, fasciculations (muscle twitches), breathing difficulties, urination changes, and nausea (Rebman et al., 2017).

Two participants met the criteria for postural orthostatic tachycardia syndrome (POTS). Results from the physical exam and laboratory testing of our sample of patients with PTLDS did not show a pattern of significant objective abnormalities.” However, “the most notable exception was the higher rate of diminished vibratory sensation on physical exam among participants with PTLDS. Read more.

Lyme disease pain after dental surgery.

Despite an uneventful extraction of four molars, a woman complained of severe widespread pain. Her pain medication list was extensive. The woman’s oral pain was minor, while her main issue was overall body pain (Lim and Kinjo Lim 2018).

Although the physicians used a multimodal pain regimen during surgery, they could not prevent her Lyme disease symptoms from recurring after surgery. Finally, the patient’s pain became so severe that she was transferred to the Intensive Care Unit (ICU). “A multimodal pain regimen was used for two days that include ketamine infusion, acetaminophen, ketorolac, oxycodone, and hydromorphone” (Lim and Kinjo Lim 2018).

Author’s note: It would be reasonable to revisit the woman’s PTLDS clinical history to determine whether she was adequately treated for her infection. Read more.

Complex regional pain syndrome (CPRS) from Lyme.

A review from Raigmore Hospital in the UK discussed autonomic dysfunction due to infectious diseases. “Complex regional pain syndromes [CRPS] and reflex sympathetic dystrophy (RSD) with regional sympathetic hyperactivity have also been reported in some patients with Lyme disease” (Artal 2017). CRPS is characterized by considerable pain (allodynia, hyperalgesia), edema, trophic changes of the skin and muscles, and sudomotor disorders.

Artal discussed a case first described by Sibanc et al. (2002). A 46-year-old man reported increasing pain and swelling in his left foot. The pain eventually caused his leg to become dysfunctional. “Even the slightest contact with the skin of the affected area caused the patient unbearable pain” (Sibanc and Lesnicar, 2002). The man improved after four weeks of intravenous ceftriaxone. Read more.

Fatigue and cognition from central sensitization syndrome?

Fatigue and cognitive impairments are prominent features of central sensitization syndrome. Patients with Post-treatment Lyme disease Syndrome or chronic Lyme disease often have persistent insomnia and fatigue. While fatigue can have a central or peripheral origin, “central fatigue often has the significant correlate of cognitive impairment” (Batheja et al., 2013).

Studies of patients with Post-treatment Lyme disease Syndrome “have shown that problems with memory, working memory, processing speed, and verbal fluency are common” (Batheja et al., 2013).

Central sensitization syndrome has been described in several illnesses characterized by fatigue with similar presentations to Lyme disease, including fibromyalgia and chronic fatigue syndrome (Batheja et al., 2013). Read more.

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