Chronic Lyme disease: causes, symptoms and treatment
Lyme disease is a progressive bacterial infection transmitted by the bite of the blacklegged tick (sometimes called the “deer tick”). Most cases of this condition are effectively treated with four to six week antibiotic regimens.
However, in up to 10% of people with early stage erythema migrans or disseminated Lyme disease, symptoms such as joint pain and swelling persist despite treatment. This is commonly referred to as “chronic Lyme disease” and clinically referred to as post Lyme disease syndrome (PTLDS).
There is some debate about the causes of chronic Lyme disease, and it is considered more of a syndrome – a collection of symptoms – rather than a specific disease. Additionally, there is medical debate about whether the Borrelia burgdorferi the bacteria that causes the initial onset of the disease is what causes the symptoms to relapse.
Although clearly related, post-Lyme disease syndrome has distinct characteristics and important differences from Lyme disease itself.
There is no definitive explanation for why PTLDS occurs, and for many years there was no real clinical recognition of the disease. In fact, it’s still controversial. In one study, only about 2% of doctors in Connecticut, an area where blacklegged ticks are endemic, recognized the condition.
This contradicts the experience of many people who continue to have symptoms after having Lyme disease treated. However, several theories emerge from this debate as to why it arises:
- Clumps of surviving bacteria: One theory is that the clusters of bacteria cannot be treated by antibiotics and are able to reactivate and cause inflammation. Additionally, some believe that the bacteria accumulate to form drug-resistant cysts.
- Triggered autoimmune disease: The most common theory in the medical community is that chronic Lyme disease is actually an autoimmune disease triggered by Lyme disease. Autoimmune diseases occur when the body’s own immune system begins to attack the body by mistake. Thus, the symptoms persist despite the absence of an active infection.
- Bacterial debris: The researchers postulated that PTLDS arises due to bacterial debris that remains in the body after antibiotic treatment. This excess material is thought to trigger the inflammation associated with the disease.
- Other terms: Some symptoms associated with PTLDS actually occur due to other types of infections or diseases, such as osteoarthritis or rheumatoid arthritis, among others. While some patient advocates consider them to be the result of Lyme disease, there is a lack of medical evidence to support this claim.
Many researchers believe that the symptoms of PTLDS actually have nothing to do with Lyme disease. In a review of seven studies, 50% to 88% of subjects thought they had Lyme disease, but showed no evidence of actually getting Lyme disease in the first place. Further research is needed to better understand PTLDS.
Chronic Lyme disease is currently considered a syndrome – a set of symptoms with no agreed cause – rather than a disease. Without a clearly established cause, it is more difficult to pinpoint.
According to the International Society of Lyme and Related Diseases, the working definition is the presence of symptoms (or a subset thereof) for six months or more after the end of antibiotic therapy.
Although their symptoms overlap, there are also key differences between post-Lyme disease syndrome and Lyme disease as it initially presents. For example, neither the fever nor the bullish rash commonly associated with Lyme disease are reported with SPTLD.
Those with PTLDS experience:
- Joint/musculoskeletal pain
- Difficulty sleeping
- Hearing loss
- Muscle aches
- Cognitive dysfunction (brain fog)
- Cardiac effects (heart palpitations)
- Tingling and nerve pain
Notably, patients may have flare-ups and periods of remission with these symptoms.
Beyond the direct symptoms, PTLDS can have serious mental health implications. Researchers at Johns Hopkins University found significantly higher levels of clinical depression and reduced quality of life when comparing subjects with chronic Lyme disease and those without.
Certainly, the controversial nature of this condition – the fact that it often goes unrecognized by doctors – only adds to this burden.
Tests used for Lyme disease detection — usually blood tests like the ELISA test — will largely not be effective in diagnosing PTLDS. The diagnosis of the disease mainly involves an assessment of the state of health and history.
What are doctors looking for? You are said to have chronic Lyme disease if:
- You have had a confirmed diagnosis of Lyme disease.
- There was a remission of symptoms after normal antibiotic treatment.
- You have symptoms of PTLDS, especially fatigue, skeletal or joint pain, and difficulty concentrating.
- Your daily life and your mental health have been significantly impacted.
Also, the doctor may perform further evaluation and tests to make sure that no other conditions are causing the problems. These may include:
- Blood tests to make sure you are not infected with another type of bacteria, such as in babesiosis, a rare and very dangerous disease transmitted by ticks
- Medication evaluation you are taking, as some medicines can produce side effects that cause symptoms
- Tests for autoimmune diseasessuch as the antinuclear assay (ANA) or the C-reactive protein (CRP) test
- Cancer screening to rule out malignancy
- Liver panel to test liver function if problems with this organ system are suspected
- Urinalysis and Imaging to assess gland, liver and/or kidney function
- Psychiatric assessment to screen for bipolar disorder, schizophrenia, major depressive disorder or other mental health issues which can cause physical pain
Early on, Lyme disease is treated with oral antibiotics like doxycycline. It was thought that chronic cases could receive this type of treatment for long periods of time, but it is unlikely to be effective.
A study evaluating intravenous antibiotic treatment for 30 days, followed by oral antibiotics for another 60 days, found no reduction in symptoms in patients with PTLDS.
However, other studies have found positive effects of prolonged antibiotic treatments, and there are subjective reports of improvement. But prolonged use of antibiotics increases the risk of dangerous and debilitating side effects.
Given these risks and research showing no difference in outcome compared to placebo, the Centers for Disease Control and Prevention (CDC) currently recommends caution with this approach.
Treatment of chronic Lyme disease is therefore primarily a matter of symptom management. It probably also requires working with a sympathetic doctor.
What might treatment approaches look like? These include:
Alternative medicine, such as taking certain herbs, vitamin supplements, or other methods, may also be considered. However, it is important to note that these approaches have not been embraced by the medical community as a whole. Nevertheless, many swear by them.
In addition, some evidence has emerged for the use of other substances, including:
- manuka honey
- Omega-3 fatty acids (fish oil)
- Vitamin B12
These may offer benefits, in particular, due to their anti-inflammatory properties, which help lessen the intensity of PTLDS symptoms. Others can help with depression. However, these are not common and standard approaches.
The good news about chronic Lyme disease is that it tends to go away over time. However, recovery is never immediate and often takes six months or more. Rehabilitation may take even longer in cases where there has been nerve damage (causing tingling and numbness in the limbs).
Given the controversial nature of the disease, as well as the challenges associated with diagnosing it, it is difficult to get a real idea of how many people recover from it. That said, among researchers who recognize PTLDS, most are expected to see a complete resolution to the problem.
A word from Verywell
What makes chronic Lyme disease particularly difficult is that it can be unpredictable. There is no established means of testing or a single “quick fix” type treatment. It’s important to remember, however, that not only do most recover from this condition, but researchers are beginning to understand it better.
What does it mean? As with Lyme disease itself, a growing number of physicians are receptive to the existence of PTLDS, which means treatment and management approaches continue to improve. Additionally, therapies to manage the symptoms of the disease are also becoming more precise and effective.
Patients with chronic Lyme disease were, for many years, shunned by the majority of the medical establishment. However, as Lyme disease diagnoses have increased, so has the number of people reporting persistent symptoms.
Things have changed. If you are suffering from pain and discomfort as a result of an infection, know that help is there for you.