Long-term problems for some Lyme neuroborreliosis patients
Long-term morbidity has been well documented for patients with Lyme disease, with numerous studies demonstrating poor treatment outcomes and higher than expected rates of disability. [1] Now, a study published by European researchers suggests things may not be as bad as they seem. [2]
The study looked at long-term survival, health, social functioning, and education in patients with European Lyme neuroborreliosis (LNB). The authors found no difference between patients with LNB and the general population in several areas, including: education, divorce and marriage rate, or mortality.
Furthermore, although there was a greater number of patients on disability than expected, those numbers were not significant. The authors found a large cohort of patients with Lyme neuroborreliosis who had been “ideally treated” had better outcomes than previous studies have indicated.
Lyme neuroborreliosis has minimal impact on patients’ ability to work, study finds.
LNB has minimal impact on the person’s ability to work, according to the authors. “[It] decreases working capacity in a small fraction of patients, consistent with a Swedish study reporting a 12% rate of disabling sequelae five years after treatment for Lyme neuroborreliosis and with a Danish study that found a 5% rate of disability after a median 33 months of follow-up.”
But life for these patients may be more difficult than the study lets on. For example, before being diagnosed with LNB, patients and their family members had a higher socioeconomic status compared with members of the general population, according to Obel and colleagues.
Income and employment rates dropped for this group after they were diagnosed with LNB. On average the annual income declined from $262K to $230K over a 10-year period. But it rose in control patients from $245K to $281K.
[bctt tweet=”Study looks at quality of life for European patients with Lyme neuroborreliosis.” username=”DrDanielCameron”]
And, the rate of developing a cancer was higher in LNB patients. “The Lyme neuroborreliosis population had increased risks of lymphoma, myelomatosis, and chronic lymphatic leukemia,” Obel states.
According to the authors, LNB patients did not have a greater risk of multiple sclerosis, skin diseases, heart block, or cardiac arrest. But they were at greater risk of arthritis and cerebral infarction, although only during the first year following the study.
Because the authors did not have access to patients’ charts, the study did not assess a broad range of health problems that have been identified in other studies.
“We must emphasize that our study focuses on patients with Lyme neuroborreliosis and was not designed to evaluate the prevalence of post-treatment Lyme disease syndrome,” writes Obel.
Nor did the study look at the incidence of chronic neurologic Lyme disease, [2] Lyme encephalopathy, [3,4] post Lyme disease, [5] post-treatment Lyme disease, [6] and post-treatment chronic Lyme disease syndrome. [7]
Three trials sponsored by the National Institutes of Health (NIH) found that Lyme disease patients remained ill an average of 4.7 to 9 years after treatment. [4,7] Obel’s study, however, did not include patients who were ill for more than one year.
“We excluded patients from the study if they were not registered with a diagnosis of Borreliosis in the DNPR within one year after study inclusion or had a contact with a department of neurology earlier than one year before study inclusion,” writes Obel.
Patients were not included in the study design either. “No patients were involved in setting the research question or the outcome measures, nor were they involved in developing plans for design or implementation of the study,” explains Obel.
Furthermore, “There are no plans to disseminate the results of the research to study participants or the relevant patient community.”
Related Articles:
Case report: Lyme neuroborreliosis more common in children
Unexplained stroke: Look for Lyme disease
What happens to the brain during acute Lyme neuroborreliosis?
References:
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
- Obel N, Dessau RB, Krogfelt KA, et al. Long term survival, health, social functioning, and education in patients with European Lyme neuroborreliosis: nationwide population based cohort study. BMJ. 2018;361:k1998.
- Kaplan RF, Jones-Woodward L, Workman K, Steere AC, Logigian EL, Meadows ME. Neuropsychological deficits in Lyme disease patients with and without other evidence of central nervous system pathology. Appl Neuropsychol. 1999;6(1):3-11.
- Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.
- Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
- Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
- Klempner MS. Controlled trials of antibiotic treatment in patients with post-treatment chronic Lyme disease. Vector Borne Zoonotic Dis. 2002;2(4):255-263.
David R Thomas
07/22/2018 (12:50 pm)
I feel this study is so bogus. I feel this study was designed to deceive and control those who are unable to recognize LD issues or even awaken an interest to a growing problem. Again, Those deniers will get it when they get it.
Kelly-Anne Bryan
07/21/2018 (7:03 pm)
There are so many study flaws here it would take days to illiterate them. The most glaring was that patient outcomes were only observed a year out, and all of these patients had been treated. Multisystem illness and disabling symptoms vary in characteristics and intensity and develop over individual timelines and respond differently to treatment. There are so many variables to be considered with tick-borne diseases! The disability incidence related to Lyme in the US appears very different when reviewing information from My Lyme Data, a patient-driven study including 10,000 patients over a period of several years.
I also found the “lack of association” findings troublesome. For instance, the statement that neuroborelliosis was not assiciated with increased MS. First, by the time someone’s immune system is dysregulated to the point of autoimmunity, there is decreased likelihood of testing positive for borellia antibodies. In anyone, testing for antibodies to infection that by nature avoids detection and impedes antibody production is ludicrous to begin with. The sickest patients don’t make appreciable antibodies. Coinfections further confound immune aberrations, symptom picture, and diagnosis. My experience as a patient and cardio/neuro nurse tells me that it is rare indeed for a neurologist to give any credence to the idea of persistant neuroborelliosis, even at so-called world class teaching institutions, much less link it to MS. I doubt very many MS patients in Europe are ever worked up properly for borelliosis. At best maybe an ELISA, which in this population misses virtually all cases. Then of course these patients are duly placed on immunosuppressants, masking symptoms and stoking the disease process. Their treatment eventually kills them. So of course the study finds no link. Especially one year out.
A similar scenario plays out with cardiac complications, which I believe are not as rare as supposed. A cardiologist might think of borellia with a case of severe carditis and heart block. This person is at the extreme of the spectrum. They are likely hospitalized and young, and at least in my hyper-endemic area, hospital labs nearly always miss detecting the infection. Occasionally the test is positive, and even then the doctor must be coached on how to interpret results. So borellia must be a rare cause. Not so fast. The rarity is detecting causation accurately. More common manifestations are arrhythmias. Coinfections like bartonella can also contribute. I have never seen a cardiologist consider these infections in new onset arrhythmia patients. And the older the patient, the less suspicion. When prompted, some have humored me and ordered testing. Occasionally the poor lab tests will reveal infection. Some I have counseled where to get better testing and work up after discharge. A few return and tell me they do indeed have Lyme.
Until we have definitive testing, a better understanding of pathology, and include tick infections on differential diagnoses, little can be said about the scope of the impact Lyme has on health.