Lyme disease can lead to long-term sequelae

How bad is Lyme disease? As the number of cases continues to rise, a recent review by Mac and colleagues entitled “Long-term sequelae and health-related quality-of-life associated with Lyme disease: A systematic review”¹ finds that Lyme disease can often lead to poor outcomes. This should come as no surprise to the many patients already suffering from chronic illness due to Lyme disease.

The Canadian authors point out that in their country alone the number of Lyme disease cases has increased 14-fold over an 8 year period (2009-2017). They reviewed studies published between 1994 and 2019 to assess the extent of long-term sequelae due to Lyme disease. Based on eligibility criteria, 21 studies were included in the analysis, two-thirds of those were from the U.S.

The study found, “based on 21 studies reporting attributable outcomes, higher proportions of sequelae reported from exposed patients were: neck pain, myalgia, arthralgia, paresthesia, sleep disorder, poor appetite, and concentration difficulties.”¹

North America vs. Europe

Interestingly, when comparing patients from North America vs. Europe, the authors found: “a higher proportion of exposed patients from North America reported depression, memory difficulties, and numbness, whereas a higher proportion of exposed patients from the European Union reported paresthesia and facial nerve palsy.”

More specifically, North American patients reported: weakness, neck pain, myalgia, fatigue, arthralgia, numbness/tingling, sleep disorder, memory difficulties, emotional fluctuation, word-finding, depression, and concentration difficulties.

Meanwhile, European patients reported: neck pain, myalgia, arthralgia, paresthesia, facial nerve palsy, sleep disorder, poor appetite, and concentration difficulties.

Patient results: Post-treatment Lyme disease Syndrome (PTLDS)

“Approximately 10–20% of patients with LD continue to experience persistent fatigue, musculoskeletal and cognitive symptoms after standard antibiotic treatment, for 6 months or longer, termed PTLDS,” the authors write.

These patients reported higher levels of fatigue (79% vs 16%), depression (69% vs 20%), and arthralgia (67% vs 28%).

Exposed patients were also more likely to suffer from neck pain, fatigue, coordination issues, sleep difficulties, memory difficulties, word-finding, and concentration difficulties than individuals without Lyme disease.

[bctt tweet=”Study finds Lyme disease patients can suffer from long-term sequelae. ” username=”DrDanielCameron”]

“Although these sequelae are considered nonspecific and common to many health conditions for primary care patients, our review suggests that patients with PTLDS do experience long-term subjectively reported sequelae,” Mac concludes.

“Current hypotheses explore the idea that patients thought to have PTLDS may, in fact, have symptoms from another health condition that are misattributed to PTLDS.”

The authors suggest that there might be an anchoring bias. Anchor bias occurs when a doctor places too much emphasis on the initial diagnosis of Lyme disease.

Editor’s note:

Too many doctors continue to dismiss subjective symptoms of Lyme disease.

Some studies report that patients were well on long-term follow-up. For example, Wormser did not find chronic illness if Lyme disease patients were treated earlier.

Mac and colleagues did address a number of other examples of chronic manifestations of Lyme disease. The list includes Lyme encephalopathy, Lyme neuropathy, postural orthostatic tachycardia syndrome (POTS), Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), and neuropsychiatric Lyme disease.

  1. Mac S, Bahia S, Simbulan F4, Pullenayegum EM, Evans GA, Patel SN, Sander B. Long-term sequelae and health-related quality-of-life associated with Lyme disease: A systematic review. Clin Infect Dis. 2019 Nov 27.

4 Replies to "Lyme disease can lead to long-term sequelae"

  • Mary Lou Hensel
    04/24/2020 (11:08 am)

    I was diagnosed with Lyme 35 years ago. Have seen many Doctors including Joseph Burrscano who I really owe my better time. He had to quit treating me with Antibiotics because the NY medical assoc. intereened. But he still sent me to Columbia Presbt. in NY for a head scan which showed Babesia and that was cured and I still have some problems but my Internest really didn’t work with me. So I just keep on going with a lot of pain, unsteadiness and feel like a zombie. I am now 86 years old and guess this is just something we have to deal with. My poor husband is so good to me and helps with my problems which is totally not what I want. But I know he loves me so much.
    Mary Lou

    • Dr. Daniel Cameron
      04/24/2020 (2:05 pm)

      I am happy to know you have someone special in your life. There is always the question of a persistent infection.

  • Rebecca
    04/23/2020 (6:51 am)

    My daughter has been suffering extreme pain for 12 years. Lyme went misdiagnosed for years due to borderline western blot tests done by top infectious disease Dr Lamarre and Cleveland Clinic. It wasnt until I found LLMD Dr DeMio who ran the Igenex Lyme test when her Lyme was confirmed as CDC positive. Talk about extreme suffering. Cannot take showers, make food, cannot live alone. Lost job, friends, basic living. Nothing has worked. Took her to Dr Donta whom greatly respect but could not travel back and forth to Massachusetts for his treatment since I am single parent, working full time, cost, and extreme difficulty traveling her. She has a power wheelchair now, so gifted with an interior architecture bachelor degree but her life is done. We can pour resources into helping covid but Lyme sufferers cannot get help. I just would like her bones to quit hurting out of all her symptoms of pain this is worst. Hope folks have a large family if they get Lyme because it has taken me and my now 87 yr old Dad , down, trying help her. Sad. The bad cases and deaths are never counted, as the families and Lyme patients can barely survive. 75k out of pocket for me to help her, tapped out financially as so many are.

    • mike
      04/26/2020 (7:42 pm)

      We want pain free times for you and your husband.So sorry for your daughter .. I also see Dr DeMio, I credit him with keeping me alive…It will break you in many ways…Are you in Ohio…I hope you don’t mind me asking.

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