Post-exertional malaise after Lyme disease: a soldier’s case
Post-exertional malaise can limit physical and cognitive activity
The symptom is associated with ME/CFS and may follow Lyme disease
A soldier’s case illustrates the challenges of diagnosis and recovery
Post-exertional malaise (PEM) is a worsening of symptoms following physical, cognitive, or emotional exertion and is one of the defining features of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Welcome to another Inside Lyme Podcast with your host Dr. Daniel Cameron. In this episode, Dr. Cameron discusses the case of a 21-year-old soldier who was ultimately dismissed from active duty after evaluation and treatment for multiple illnesses, including suspected Lyme disease.
The case was first described by Melanson and colleagues in a paper entitled “The Epistemic Fallacy: Unintended Consequences of Empirically Treating (Clinically Diagnosed) Chronic Lyme Disease in a Soldier.”1
Lyme disease was suspected clinically in this patient, but repeated serologic testing was negative. Therefore, the case cannot establish that Lyme disease caused his post-exertional malaise. Instead, it illustrates the difficulty of evaluating severe persistent symptoms when several possible diagnoses overlap.
What is post-exertional malaise?
Post-exertional malaise, sometimes written as post exertional malaise, refers to a worsening of symptoms after physical, mental, or emotional activity. Symptoms may worsen immediately or be delayed by hours or days. Recovery can take days, weeks, or longer depending on the individual and the severity of illness.
Post-exertional malaise is commonly associated with ME/CFS. It may also be reported by patients experiencing persistent symptoms following Lyme disease and other infections. A systematic review comparing post-treatment Lyme disease syndrome (PTLDS) and ME/CFS found that the two conditions share several features, including fatigue, cognitive difficulties, sleep problems, pain, and impaired function.2
The following case illustrates how post-exertional malaise can become a major source of disability after evaluation and treatment for multiple possible conditions.
A student athlete develops persistent symptoms
“A 21-year-old, Division 1 student athlete patient presented with heart palpitations and frequent unprovoked adrenaline rushes,” wrote the authors. His symptoms were initially attributed to stress.
Four months later, testing for Epstein-Barr virus was positive, but serologic testing for Lyme disease was negative. “He was diagnosed with EBV reactivation and prescribed rest and recovery,” the authors wrote.
The man graduated but remained on medical leave because his symptoms had not resolved.
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He was presumed to suffer from persistent mononucleosis-like symptoms and traumatic brain injury attributed to possible post-concussion syndrome related to sports injuries, the authors explained.
The patient was then treated with hyperbaric oxygen therapy. However, treatment was discontinued after two sessions because of increased heart palpitations, flank pain, myalgias, and neuropathy.
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Evaluation and treatment for suspected Lyme disease
Although repeat testing for Lyme disease was negative, the man was treated clinically for Lyme disease based on his symptoms, possible tick exposure during military training, and the lack of other definitive findings.
He received three courses of doxycycline. Further Lyme disease tests were described as inconclusive.
The patient stopped treatment after reporting worsening joint pain, intermittent nerve pain, headaches, fatigue, cognitive difficulties, anxiety, mild depression, and increased chest pain.
Symptoms of post-exertional malaise
Symptoms associated with post-exertional malaise may include:
- Severe fatigue
- Cognitive impairment
- Difficulty concentrating
- Reduced stamina
- Exercise intolerance
- Pain flares after activity
- Worsening neurologic symptoms
- Delayed recovery following exertion
PEM differs from ordinary tiredness. Even activity that previously would have been tolerated may trigger a disproportionate and sometimes delayed worsening of multiple symptoms.
Additional diagnoses and treatments
The patient then sought treatment from a functional medicine doctor. His workup focused on possible mycotoxicosis, in part because of his living and training environments.
The authors reported a homozygous single nucleotide polymorphism in the MTHFR gene and an abnormal urine mycotoxin panel. These findings were incorporated into the patient’s evaluation, although they do not independently establish the cause of post-exertional malaise.
He was treated for three months with IV phosphatidylcholine, IV glutathione, IV leucovorin, and subcutaneous vitamin B12. He reported minor improvements in fatigue and stamina but stopped treatment because of cost. His follow-up urine mycotoxin panel was negative.
As his symptoms persisted and exercise intolerance worsened, clinicians broadened the differential diagnosis beyond Lyme disease and mycotoxicosis.
The man remained ill and was unable to perform moderate or strenuous physical exercise or cognitive activity. He experienced cognitive impairment affecting short-term memory and focus, severe fatigue, post-exertional malaise, asthma, increasing allergic-type reactions, chemical and food sensitivities, histamine intolerance, and progression to heat- and ultraviolet-induced urticaria.
Additionally, the patient struggled with anxiety, depression, sensitivity to stress, and difficulty tolerating environmental stimulation such as bright or flashing lights and loud noises.
He was subsequently diagnosed with ME/CFS following what the authors described as resolved acute mycotoxicosis.
Post-exertional malaise and activity management
Patients with PEM may experience delayed symptom worsening after exceeding their individual physical or cognitive limits. Simply encouraging progressively more exercise may worsen symptoms in some patients when activity repeatedly triggers post-exertional crashes.
Activity management, often called pacing, involves balancing activity and rest while attempting to remain within an individual’s current energy limits. This approach does not treat the underlying cause but may help reduce the frequency or severity of post-exertional symptom flares.
Military Medical Evaluation Board findings
The young man was considered unfit for duty by the Army Medical Evaluation Board for the following reported conditions: Lyme disease, mycotoxicosis, chronic fatigue syndrome, allergic rhinitis, and vasomotor rhinitis.
The authors described the severity of the soldier’s symptoms and poor functional status despite extensive evaluation and empiric treatment for several suspected illnesses. His case also illustrates the importance of continuing to consider alternative or overlapping diagnoses when symptoms persist.
Frequently Asked Questions
What is post-exertional malaise?
Post-exertional malaise is a worsening of symptoms following physical, cognitive, or emotional exertion. The worsening may be delayed and can persist for days or longer after activity.
Can Lyme disease cause post-exertional malaise?
Some patients with persistent symptoms following Lyme disease report post-exertional malaise, exercise intolerance, and worsening symptoms after activity. However, PEM is not specific to Lyme disease and may occur with ME/CFS and other infection-associated chronic illnesses.
Is post-exertional malaise the same as chronic fatigue?
No. Post-exertional malaise refers to a worsening of multiple symptoms after exertion, while fatigue is only one of the symptoms that may occur during PEM.
Can exercise make Lyme disease symptoms worse?
Some patients report worsening fatigue, pain, cognitive dysfunction, or other symptoms following physical activity. Activity should be individualized, particularly when exertion repeatedly triggers delayed or prolonged symptom flares.
What is pacing for post-exertional malaise?
Pacing is an activity-management approach that balances activity and rest to reduce the risk of triggering post-exertional symptom worsening. The appropriate level of activity differs for each patient.
Clinical Takeaway
Post-exertional malaise can significantly impair physical and cognitive function and may persist despite evaluation and treatment for multiple conditions. This soldier’s Lyme disease testing remained negative, so the case does not prove that Lyme disease caused his PEM. It instead demonstrates the complexity of evaluating severe exercise intolerance when suspected Lyme disease, ME/CFS, environmental exposures, and other possible diagnoses overlap.
Persistent exercise intolerance, cognitive dysfunction, and delayed symptom worsening after activity deserve careful evaluation and an individualized approach to activity and recovery.
Related Articles
Lyme disease fatigue
Autonomic dysfunction and Lyme disease
Persistent Lyme disease symptoms
Recovery from Lyme disease
References
- Melanson, V. R., Hering, K. A., Reilly, J. L., Frullaney, J. M., & Barnhill, J. C. The epistemic fallacy: Unintended consequences of empirically treating (clinically diagnosed) chronic Lyme disease in a soldier. Medical Journal (Fort Sam Houston, Texas). 2022;(Per 22-01/02/03):50–55.
- Bai, N. A., Richardson, C. S., & Katona, P. Posttreatment Lyme disease syndrome and myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review and comparison of pathogenesis. Chronic Diseases and Translational Medicine. 2023;9(3):183–190.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
Welcome to my life. The VA still denies I have Lyme, ME/CFS and now MCAS, etc after 6 years. Thank God for Medicare and NDs!
I am astounded this poor young man got this far. With diagnosis and that amount of treatment. For five years I’ve been literally begging my GP here in London UK to reckonise me. Yet that are flat refusing to even consider Lyme disease. I am now so sick I cannot work. I have no money for private treatment. I feel scared, alone and dismissed. As well as gaslighted into believing i have mental issues causing my symptoms. I am now desperate for help, I don’t know where to turn. To sick to even get up some days, let alone write emails of complaints. I did complain about one doctor who slapped my hand away. That just made it worst at now every GP in the surgery just roll their eyes and patronise me. I now have nothing but anger & frustration also added on top of everything else. The way they have treated me for five years has been appalling. When ever I can I’ve bought doxcycline from online. I’ve also bought iver mec to keep going. Also fen Ben.
Look for an attorney and let them fight for you, the VA does not like to recognize many illnesses.
Part of the problem are viral, bacterial infections plus parasite infestations. First thing to do is to start eating raw garlic every single day, two cloves. After that start drinking green tea two cups a day every single day plus start drinking Moringa tea infusions. Start eating oranges and red grapes and mushrooms. Find competent MD and ask him to give you prescription for Amoxicillin 750mg x 3 times a day for 7 days. Four week later you need prescription for Ciprofloxacin 250mg x 3 times a day for 5 days and you will be OK.
Dr. C, I wish you would have written the headline differently. Who failed? The soldier or the lyme treatment? You wrote the title as if the soldier if the failure. The failure is the lyme treatment’s failure and not the soldiers. With this title you are feeding the standard narrative that it is the patients failing. Patients aren’t failing…..the treatments are. And what a difference it would make if you had titled it as treatment’s fault rather than the soldier’s.