Supporting patients with long-term problems after Lyme disease

• Post treatment Lyme disease syndrome
• Post-Lyme Disease Syndrome
• Lyme disease
• General practice
• Primary health care

There has been controversy about Lyme disease (LD), first about whether people really can have persistent problems after Lyme disease, and then about whether more antibiotic treatment is beneficial if they do still have symptoms. This overview compiles into one summary information about what the studies have found about the cause of the symptoms and the possible treatments, so that GPs are better able to advise patients who have the long-term problems.

Some patients have persistent symptoms after LD, despite having had the recommended antibiotic treatment. A small proportion of LD patients have a relevant delay in treatment, which may increase their risk for the development of problems that can last a long time, perhaps a few years. These delays can sometimes result from the difficulty of diagnosis, particularly as many LD cases do not have the erythema migrans rash.¹ Catching LD while holidaying abroad may make a delay more likely because it may be some time before the patient returns home and sees a doctor. The Royal College of General Practitioners has prepared an LD toolkit² and mentions post-treatment Lyme disease syndrome (PTLDS) as one term used to describe these long-term problems. PTLDS can significantly impact quality of life³ and recovery may be extremely slow, with no apparent improvement from one month to the next, although very subtle improvement may be seen from one year to the next.

PTLDS results in extreme fatigue, cognitive disorders, and musculoskeletal pain. The fatigue has been described as profound and debilitating. The musculoskeletal pain is often roving, asymmetrical pain in the limbs, and is unlike fibromyalgia.⁴ Memory problems, particularly verbal memory, are also observed, as well as poor concentration, including auditory attention. A study by Fallon et al has shown that patients with PTLDS demonstrated significant flow reductions …