When someone is diagnosed with a tick-borne disease, antibiotics are typically the first-line treatment. Lyme disease in particular is typically treated with 3-4 weeks of antibiotics such as doxycycline, amoxicillin, or cefuroxime axetil.
Unfortunately, though, this does not always resolve symptoms. An estimated 10% of people who have received treatment for Lyme disease experience chronic, sometimes debilitating symptoms. This is what’s called Post-Treatment Lyme Disease Syndrome, or PTLDS.
Post-treatment Lyme Disease Syndrome is sometimes used interchangeably with “Post Lyme Disease Syndrome” as well as chronic Lyme disease. These persistent symptoms can have a huge impact on the well-being and health of the person affected. This article will examine what may cause PTLDS, as well as the symptoms and treatments available.
Symptoms of Post-Treatment Lyme Disease Syndrome
Symptoms of PTLDS can be difficult to pinpoint as they are not necessarily specific to this condition. That being said, there are some main symptoms that people with PTLDS experience:
- Muscular-skeletal aches and pain (myalgia)
- Cognitive dysfunction
- Fatigue
- Difficulty sleeping
- Arthralgia (joint stiffness)
Some people also experience mental health issues like depression and anxiety as a result of dealing with the difficulties of this condition. This can affect their social lives, relationships, work, and overall quality of life.
PTLDS vs. Chronic Lyme Disease
There is some confusion about the difference between chronic Lyme disease and post-treatment Lyme disease syndrome.
Post-Treatment Lyme Disease Syndrome is the preferred term for many physicians and organizations, including the CDC. It refers specifically to persistent symptoms of Lyme disease in a patient who has already undergone treatment for Lyme disease. Other patients and physicians refer to this same condition as chronic Lyme disease, since the patient is experiencing chronic symptoms.
However, there are cases in which patients and physicians may refer to “chronic Lyme disease” in the absence of any prior treatment. Remember that many patients go years without ever getting a proper diagnosis of Lyme disease, let alone treatment. Once a diagnosis is made, the symptoms of their late-stage Lyme disease may have become chronic, i.e. leading to chronic Lyme disease. This would not be considered a case of PTLDS since no diagnosis or treatment ever occurred before the disease became chronic.
The important thing to remember is that the earlier a diagnosis is made and treatment is given, the less likely a patient is to develop persistent symptoms.
PTLDS Risk Factors
The cause of post-treatment Lyme disease syndrome is unknown and is a huge source of debate in the medical community. But there are a few theories.
One theory is that there are leftover reservoirs of the bacteria that causes Lyme disease after antibiotic treatment. Others argue that people who develop PTLDS have an underlying autoimmune condition, as Lyme disease can alter and weaken the immune system. Lyme disease is also often misdiagnosed as an autoimmune disorder such as Rheumatoid Arthritis.
Some other possible theories include:
- Persistent immune activation
- Damage from the original infection
- Changes in the brain chemistry that affects pain pathways and cognition
- Persistent infection
Researchers have been able to find a correlation between more severe symptoms at presentation, more widely spread symptoms, and delayed antibiotic treatment with the development of PTLDS in those same patients. Although this doesn’t fully explain the risk factors behind PTLDS, it does emphasize the importance of early antibiotic treatment when possible and being diligent about preventing tick bites.
PTLDS Treatment Options
Currently, there is no FDA-approved or commonly agreed-upon treatment for PTLDS. Though some physicians support it, others advise against long courses of antibiotics with PTLDS because of the potential risks, such as antibiotic-resistant infection, kidney or liver damage, allergic reactions, and more. However, there is much debate over the most effective treatments for persistent Lyme disease symptoms. You should always discuss any potential treatment with your doctor.
Some people recover with time, but others experience long-term symptoms – i.e., chronic Lyme – and a long road to finding treatments that help them feel some relief. Treatment of PTLDS is often a combination of allopathic medicine and alternative modalities.
Treatment focuses on helping alleviate the symptoms through tools like:
- Medications used for fibromyalgia
- Tricyclic antidepressants for the management of pain and sleep
- SSRI antidepressants for secondary depression or anxiety
- Medications for fatigue
- Cognitive-behavioral therapy
- Mindfulness-based stress reduction
Living with Post Treatment Lyme Disease Syndrome
PTLDS can be one of the most frustrating medical issues to navigate. People often have a difficult time receiving a proper diagnosis, let alone treatment that works for them. They may have a difficult time going about their daily life comfortably and deal with impaired mental health as a result of their discomfort and experience.
Although most cases of PTLDS are not preventable, you can take steps to protect yourself and your family from tick bites and long-term symptoms. You can do this by covering your arms and legs while you’re in an area where ticks are prevalent, as well as using bug spray, and thoroughly checking yourself, your family, and your pets for ticks after possible exposure.
If you do happen to be bitten by a tick, it’s important to seek testing as soon as possible, as well as test the tick if you’re able to save it. You can do this through services like the tick testing lab at IGeneX.