Lyme disease toolkit

Persistent symptoms

There is no international consensus on the cause and management of persistent symptoms. Possible explanations for persistent symptoms following a diagnosis of Lyme disease include:

• treatment failure
• immune dysfunction
• non-adherence
• re-infection
• tissue damage

This is variously described as either Post-Treatment Lyme Disease Syndrome (PTLDS), Post-Treatment Lyme Disease (PTLD) or Chronic Lyme disease.

Post-Treatment Lyme Disease Syndrome

This implies a post-infectious state. A supportive ‘wait and see’ policy is suggested.

Post-Treatment Lyme Disease

This is a more descriptive term which acknowledges the possibility of ongoing infection as well as immune dysfunction and tissue damage as a cause for continuing symptoms.

Chronic Lyme disease

This is an ill-defined term which encompasses a range of concepts.

Many doctors and researchers consider that the ongoing symptoms may be driven by chronic infection. For example, borrelia, another tick-borne infection, an opportunistic infection or other factors. These doctors advocate the use of individualised treatment regimes. Many patients report significant improvement after treatment with extended treatment regimes and or complementary therapies, although others do not.

Researchers at Johns Hopkins Lyme Disease Research Centre have identified Post Treatment Lyme Disease (PTLD) as ‘a serious and impairing condition’, affecting a ‘subset of patients who remain significantly ill 6 months or more following standard antibiotic therapy for Lyme disease’. Risk factors for developing PTLD appear to include delay in diagnosis, increased severity of initial illness and the presence of neurological symptoms. Research into the causes and management of this condition is ongoing

Alternative diagnoses

The possibility of alternative diagnoses must be fully evaluated, for example:

• anaemia
• hypothyroidism
• B12 deficiency
• Vitamin D deficiency
• neurological, rheumatological or cardiac conditions
• GI disorders
• psychiatric or psychological disorders
• malignancy
• ME/CFS
• fibromyalgia
• postural orthostatic tachycardia syndrome
• other multi-systemic illnesses such as SLE or Ehlers-Danlos syndrome

The following resources provide information on other conditions that may present as Lyme disease:

• PoTS UK (Postural Tachycardia Syndrome)
• Lyme disease presenting as Bell’s palsy
• Lyme disease presenting as CNS vasculitis or CVA
• Lyme disease presenting as psychiatric illness
• Lyme disease mimicking motor neurone disease
• Lyme disease presenting as acute brachial neuritis