What is the treatment for Lyme disease?
The first-line standard of care treatment for adults with Lyme disease is doxycycline, a tetracycline antibiotic. Other antibiotics that have activity against borrelia include the penicillin-like antibiotic, amoxicillin, and the cephalosporin, Ceftin. The mainstay of treatment is with oral (pill) antibiotics, but intravenous antibiotics are sometimes indicated for more difficult to treat cases such as meningitis, late Lyme arthritis, or neurologic-Lyme disease.
Why are antibiotics the first line of treatment for Lyme disease?
The use of antibiotics is critical for treating Lyme disease. Without antibiotic treatment, the Lyme bacteria can more easily evade the host immune system and persist in the body. Antibiotics go into the bacteria preferentially and either stop the multiplication of the bacteria (doxycycline) or disrupt the cell wall of the bacteria and kill the bacteria (penicillins). By stopping the growth or killing the bacteria the human host immune response is given a leg up to eradicate the residual infection. Without antibiotics, the infection in Lyme disease can more readily persist and disseminate.
What are the side effects of Lyme disease treatments?
Antibiotics, like all medications, have the potential for side effects. Any antibiotic can cause skin rashes, and if an itchy red rash develops while on antibiotics, a patient should see their physician. Sometimes symptoms worsen for the first few days on an antibiotic. This is called a Herxheimer reaction and occurs when the antibiotics start to kill the bacteria. In the first 24 to 48 hours, these dead bacteria stimulate the immune system to release inflammatory cytokines and chemokines that can cause increased fever and achiness. This should be transient and last no more than a day or two after the initiation of antibiotics.
The most common side effect of the penicillin antibiotics is diarrhea, and occasionally even serious cases caused by the bacteria Clostridium difficile. This bacterial overgrowth condition occurs because antibiotics kill the good bacteria in our gut. It can be helpful to use probiotics to restore the good bacteria and microbiome balance.
The prognosis after early treatment of Lyme disease is generally very good. The prognosis worsens, however, when diagnosis and treatment are delayed.
Most patients with early Lyme disease infection recover with antibiotics and return to their normal state of health. However, some patients suffer from chronic symptoms related to Lyme disease despite standard of care antibiotic therapy. For research studies, a defined subset of this condition is called Post Treatment Lyme Disease Syndrome (PTLDS).
What is Post Treatment Lyme Disease Syndrome?
Symptoms of Post Treatment Lyme Disease
- Include severe fatigue, musculoskeletal pain, & cognitive problems
- Can significantly impact patients’ health and quality of life
- Can be debilitating and prolonged
Post Treatment Lyme Disease Syndrome (PTLDS) represents a subset of patients who remain significantly ill 6 months or more following standard antibiotic therapy for Lyme disease. PTLDS is characterized by a constellation of symptoms that includes severe fatigue, musculoskeletal pain, sleep disturbance, depression, and cognitive problems such as difficulty with short-term memory, speed of thinking, or multi-tasking. In the absence of a direct diagnostic biomarker, PTLDS has been difficult to diagnose by physicians, and its existence has been controversial. However, our clinical research shows that meticulous patient evaluation when used alongside appropriate diagnostic testing can reliably identify patients with typical symptom patterns of PTLDS.
Our research indicates the chronic symptom burden related to PTLDS is significant. Although often invisible to others, the negative impact on quality of life and daily functioning is substantial for PTLDS sufferers.
The chronic symptom burden related to Lyme disease is considerable, as shown on the left side of the graph above, and statistically significantly greater than the aches and pains of daily living experienced by the control group, on the right.
What are the risk factors for Post Treatment Lyme Disease Syndrome?
Risk factors for Post Treatment Lyme Disease Syndrome include:
- Delay in diagnosis
- Increased severity of initial illness
- Presence of neurologic symptoms
Increased severity of initial illness, the presence of neurologic symptoms, and initial misdiagnosis increase the risk of Post Treatment Lyme Disease Syndrome. PTLDS is especially common in people that have had neurologic involvement. The rates of Post Treatment Lyme Disease Syndrome after neurologic involvement may be as high as 20% or even higher. Other risk factors being investigated are genetic predispositions and immunologic variables.
In addition to Borrelia burgdorferi, the bacteria that causes Lyme disease, there are several other tick-borne co-infections that can also contribute to more prolonged and complicated illness.
What causes Post Treatment Lyme Disease Syndrome?
The causes of PTLDS are not yet well understood but our Center is investigating the potential roles of:
- Infection-induced immune dysfunction or auto-immunity
- Persistent bacterial infection or bacterial debris
- Neural network alteration
- Other tick-borne infections
- Other biologic mechanisms of disease
Our research has validated PTLDS as a serious and impairing condition. However, the causes of PTLDS are not yet well understood or validated, and the term PTLDS does not mean post-infection or imply an assumption of underlying biologic mechanisms. The roles of immune dysfunction, autoimmunity, persistent bacterial infection, neural network alteration, and other potential causative biologic mechanisms of PTLDS are being investigated at our Center.
Research at our Center aims to understand the biologic drivers of all manifestations of Lyme disease so that diagnostics can be improved, and more effective treatments developed to enhance patients’ health outcomes.
Is there a cure for Post Treatment Lyme Disease Syndrome?
Currently there are no FDA approved treatments for Post Treatment Lyme Disease Syndrome. Therefore, treatments must be individualized by addressing specific symptoms and circumstances for each individual.
Late Lyme Arthritis
What is the prognosis for Late Lyme Arthritis?
Following antibiotic therapy, approximately 90% of late Lyme arthritis patients recover from extensive joint swelling, arthritis, and pain.
What happens if a patient doesn’t recover from Late Lyme Arthritis?
After extensive antibiotic treatment, approximately 10% of late Lyme arthritis patients remain symptomatic with a condition termed antibiotic refractory late Lyme arthritis. Extensive research has shown that the bacteria can no longer be found in the tissue or fluid of this subgroup of patients. Their continued swelling of the joints and pain is thought to be perpetuated by their own immune system’s autoimmune condition. Their autoimmunity continues to inflame the tissues and cause swelling and pain even in the absence of detectable bacteria.
Why are patients often referred to the Center?
Patients are often referred to the Lyme Disease Research Center for evaluation of chronic Lyme disease, an umbrella term that encompasses many different subsets of illness. Examples of defined Lyme disease subsets are Post Treatment Lyme Disease Syndrome (PTLDS), and Antibiotic Refractory Late Lyme Arthritis. The mechanisms of these Lyme disease conditions are different and effective treatments need to be tailored accordingly.
The symptoms of chronic Lyme disease are similar to and overlap with other conditions involving fatigue, pain, and cognitive symptoms. Therefore, rigorous diagnostic evaluation is necessary to determine if Lyme disease could be the trigger for ongoing disease processes or if some other disease processes are involved.
By distinguishing subsets of Lyme disease, such as PTLDS, our research program is illuminating the pathophysiology of the illness to improve diagnostics, treatments, and quality of life for patients.