Treatment FAQ

why still in pain after treatment with lyme disease

by Dr. Jessie Brown Published 2 years ago Updated 2 years ago
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Lyme disease is caused by infection with the bacterium Borrelia burgdorferi

Borrelia burgdorferi

Borrelia burgdorferi is a bacterial species of the spirochete class of the genus Borrelia. B. burgdorferi exists in North America and Europe and until 2016 was the only known cause of Lyme disease in North America. Borrelia species are considered gram-negative.

. Although most cases of Lyme disease can be cured with a 2- to 4-week course of oral antibiotics, patients can sometimes have symptoms of pain, fatigue, or difficulty thinking that lasts for more than 6 months after they finish treatment.

Some people who were treated for Lyme disease report muscle and joint pain, cognitive difficulties, sleep issues, or fatigue after their treatments were finished. The cause of this is unknown. However, researchers believe it may be due to an autoimmune response in which your immune system attacks healthy tissues.

Full Answer

Does post-treatment Lyme disease syndrome cause fatigue?

[2] What is surprising is that no one in the control group had severe fatigue, pain or cognitive complaints. But 50% of PTLDS patients reported severe fatigue, 28.3% reported pain and 23.3% had cognitive complaints. 50% of patients with Post-treatment Lyme disease syndrome have severe fatigue. Click To Tweet

Can Lyme disease cause chronic pain?

This study supports what many Lyme treating doctors have found in their practices: patients who are treated for Lyme disease can suffer from a range of chronic, persistent and sometimes debilitating symptoms.

How long do Lyme disease symptoms last?

It is not uncommon for patients treated for Lyme disease with a recommended 2 to 4 week course of antibiotics to have lingering symptoms of fatigue, pain, or joint and muscle aches at the time they finish treatment. In a small percentage of cases, these symptoms can last for more than 6 months.

Is post treatment Lyme disease syndrome a real disorder?

Researchers report that a tick-borne illness known as Post Treatment Lyme Disease Syndrome (PTLDS) is a real disorder with real symptoms. Credit: iStock

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Can you still have symptoms of Lyme disease after treatment?

Although most cases of Lyme disease can be cured with a 2- to 4-week course of oral antibiotics, patients can sometimes have symptoms of pain, fatigue, or difficulty thinking that lasts for more than 6 months after they finish treatment. This condition is called Post-Treatment Lyme Disease Syndrome (PTLDS).

How long does Lyme disease pain last?

It is not uncommon for patients treated for Lyme disease with a recommended 2 to 4 week course of antibiotics to have lingering symptoms of fatigue, pain, or joint and muscle aches at the time they finish treatment. In a small percentage of cases, these symptoms can last for more than 6 months.

What are the permanent effects of Lyme disease?

Symptoms can include debilitating fatigue, muscle and joint pain, headaches, mental fog causing difficulty with memory or finding words, irritability, and sleeplessness. Some people who experience these symptoms have been previously diagnosed with, and treated for, Lyme disease.

How do you get rid of Lyme disease pain?

TreatmentOral antibiotics. These are the standard treatment for early-stage Lyme disease. ... Intravenous antibiotics. If the disease involves the central nervous system, your doctor might recommend treatment with an intravenous antibiotic for 14 to 28 days.

Can nerve damage from Lyme disease be reversed?

Steere and two colleagues who studied the disease cautioned that only a few Lyme patients suffer this lingering nerve disorder, and most can be cured with antibiotics given early in their infections.

Can you treat late stage Lyme disease?

Neurologic conditions associated with late Lyme disease are treated with intravenous antibiotics, usually ceftriaxone or cefotaxime, given daily for two to four weeks.

How painful is Lyme disease?

It's typically not itchy or painful but might feel warm to the touch. Erythema migrans is one of the hallmarks of Lyme disease, although not everyone with Lyme disease develops the rash.

What causes a Lyme disease flare up?

Triggers for Lyme disease vary by person, but they can include: emotional stress (such as a divorce, death in the family, or accidents) physical stress to the body (i.e., surgery, physical harm, concussion) life stress or stressful events.

What are neurological symptoms of Lyme disease?

What are the symptoms? Neurological complications most often occur in early disseminated Lyme disease, with numbness, pain, weakness, facial palsy/droop (paralysis of the facial muscles), visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headache.

Can you fully recover from Lyme disease?

Understanding Lyme disease treatment and potential complications can help clear up your concerns. Fortunately, most people with Lyme disease recover fully after completing a course of antibiotics. Lyme disease symptoms may persist for longer, but only in rare cases.

Is Stage 3 Lyme disease curable?

Stage 3 (late disseminated) Lyme disease is also treated with various antibiotics: For Lyme disease that causes arthritis, 28 days of oral doxycycline, amoxicillin, or cefuroxime is prescribed. Additional courses of antibiotics may be necessary, depending on the severity and persistence of your symptoms.

Do symptoms of Lyme disease come and go?

Symptoms may come and go. Untreated, the bacteria can spread to the brain, heart, and joints. Symptoms of early disseminated Lyme disease (stage 2) may occur weeks to months after the tick bite, and may include: Numbness or pain in the nerve area.

What is lyme disease?

Lyme disease encompasses a range of biologic processes and disease manifestations. Patients are often referred to the Lyme Disease Research Center for evaluation of chronic Lyme disease, an umbrella term that encompasses many heterogeneous subsets of illness. Examples of defined Lyme disease subsets include Post Treatment Lyme Disease (PTLD), ...

How high is the risk of Lyme disease after treatment?

The rates of Post Treatment Lyme Disease after neurologic involvement may be as high as 20% or even higher. Other risk factors being investigated are genetic predispositions and immunologic variables.

How common is PTLD after lyme disease?

The rates of Post Treatment Lyme Disease after neurologic involvement may be as high as 20% or even higher.

What are the risk factors for lyme disease?

Risk factors for Post Treatment Lyme Disease include: 1 Delay in diagnosis 2 Increased severity of initial illness 3 Presence of neurologic symptoms

What is the reaction of antibiotics to a virus?

This is called a Herxheimer reaction and occurs when the antibiotics start to kill the bacteria. In the first 24 to 48 hours, dead bacterial products stimulate the immune system to release inflammatory cytokines and chemokines that can cause increased fever and achiness.

What antibiotics are used for borrelia?

Other antibiotics that have activity against borrelia include the penicillin-like antibiotic, amoxicillin, and the second generation cep halosporin, Ceftin. The mainstay of treatment is with oral (pill) antibiotics, but intravenous antibiotics are sometimes indicated for more difficult to treat cases of neurologic-Lyme disease, such as meningitis, ...

What are the symptoms of PTLD?

PTLD 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.

When was Lyme disease first recognized?

As Lyme disease rates have steadily climbed in the United States since it was first recognized in the mid-1970s, so have reports of a collection of symptoms that patients commonly refer to as chronic Lyme disease. Experts in the field have questioned the validity of this term because of the lack of direct evidence in this group of patients ...

How many patients were recruited for the PTLDS study?

This study, and the term “PTLDS,” do not define the cause of the condition, but do provide a starting place for future studies. The researchers recruited 61 patients who were either self- or physician-referred to the Lyme Disease Clinical Research Center at Johns Hopkins and who met the study criteria. Roughly half were women and half were men, ...

Is Lyme disease a real disease?

Researchers report that a tick-borne illness known as Post Treatment Lyme Disease Syndrome (PTLDS) is a real disorder with real symptoms. Credit: iStock. In a study of 61 people treated for the bacteria that causes Lyme disease, Johns Hopkins researchers conclude that fatigue, pain, insomnia and depression do indeed persist over long periods ...

What are the symptoms of lyme arthritis?

What are the symptoms? The main feature of Lyme arthritis is obvious swelling of one or a few joints. While the knees are affected most often, other large joints such as the shoulder, ankle, elbow, jaw, wrist, and hip can also be involved. The joint may feel warm to the touch or cause pain during movement.

What is lyme arthritis?

Lyme arthritis in the knee. Lyme arthritis occurs when Lyme disease bacteria enter joint tissue and cause inflammation. If left untreated, permanent damage to the joint can occur. Lyme arthritis accounts for approximately one out of every four Lyme disease cases reported to CDC. Because of reporting practices, this statistic may overstate ...

How long does it take for lyme arthritis to develop?

Lyme arthritis typically develops within one to a few months after infection .

Can you take antibiotics after a first course?

Patients with persistent joint inflammation and pain after the first course of antibiotics may require a second course (see tables below). In some cases, joint swelling and pain can persist or recur after two courses of antibiotics.

Can lyme arthritis be mistaken for septic arthritis?

Lyme arthritis can be mistaken for septic arthritis, especially in children. Whereas septic arthritis may require surgical intervention, Lyme arthritis generally does not. Talk to patients about tick bite prevention.

How long does lyme arthritis last?

Lyme arthritis can persist for months or even years in some cases. Researchers are still unsure why joint symptoms can continue long after antibiotics have destroyed the bacteria.

What is the secret of Lyme disease?

The secret may lie in the walls of the bacterium that causes the condition. Ticks are responsible for spreading Lyme disease. Lyme disease occurs when a person becomes infected with a tick-borne bacterium called Borrelia burgdorferi. Initial symptoms typically include general fatigue, fever, skin rashes, and headaches.

Why are ticks becoming more prevalent?

since the late 1990s, and overall, tick-borne diseases are becoming more prevalent. This increase is due, at least in part, to rising global temperatures. Due to the steady growth in the number of cases, scientists are keen to uncover more effective ways of treating the long-term symptoms.

Can lyme disease cause headaches?

Initial symptoms typically include general fatigue, fever, skin rashes, and headaches. Although doctors can often treat Lyme disease with antibiotics, if they do not catch it early, the bacteria can cause long-term issues with the individual’s joints. In fact, following infection with B. burgdorferi, about 60% of people develop a condition called ...

Who discovered Lyme disease?

Among the scientists who contributed to the most recent work was Prof. Allen Steere, the doctor who discovered and named Lyme disease. The researchers published their most recent findings in the journal Proceedings of the National Academy of Sciences of the United States of America.

Does Lyme arthritis respond to treatment?

Specifically, the team wanted to understand why some cases of Lyme arthritis do not respond to treatment. For some people, even when there appears to be no obvious infection, symptoms persist.

How long does chronic pain last?

Chronic pain–defined as ongoing pain that continues for longer than six months –is a common complaint of patients with persistent Lyme disease. The CDC estimates that 20% of Americans currently live with chronic pain. Estimates range from 10% to 36% of Lyme patients who are diagnosed and treated early are left with chronic symptoms.

How to help with pain?

Stress reduction. Creating art, journaling, gardening, reading a good book , even just sitting outdoors and listening to the sounds of nature can help distract from pain. Research has shown that music helps the brain release dopamine our “feel-good” hormone.

Why do lymph nodes swell?

Swollen lymph nodes—lymphadenopathy—can result from Lyme disease, certain other infections, and rarely, cancer. Lymph nodes (or lymph glands) are an integral part of our immune system, designed to filter out bacteria, viruses and other waste products. Any swollen lymph node should be evaluated by a physician.

How to reduce fatigue when sick?

When you are sick you must be very conservative with energy expenditure. Modifying or changing your activities so they do not aggravate your symptoms is extremely important. Restricting, reducing, or spacing out your activities can help reduce pain and fatigue.

What is the medical definition of pain?

The new definition, “An unpleasant sensory and emotional experience associated with, or resembling that associated with, ...

Can Lyme disease cause insomnia?

If you’ve had or have Lyme, you are likely no stranger to insomnia. During the first year of my daughter’s illness, her symptoms would peak after midnight, making it impossible for her to fall asleep until around 6 a.m. Essentially, her days and nights were reversed.

Does Lyme disease cause pain?

Because Lyme disease can affect every organ and system of the body, every patient may have a different set of complaints. While neck, joint and muscle pain are very common in early Lyme disease, there are many other types of pain when the disease becomes chronic. For instance, allodynia is a type of pain that is caused by something ...

How to control lyme disease pain?

Sleep in Lyme Disease Pain Management. The center of a pain control strategy in Lyme disease is sleep . Sleep helps in two ways. Getting adequate sleep decreases pain sensitivity, which increases pain tolerance. Sleep also lowers inflammation cytokines that lead to Lyme pain.

Why does Lyme cause nerve pain?

These qualities of pain occur when Lyme germs directly injure nerves. Or it occurs as a result of inflammation of those nerves from cytokines. There is a second type of nerve pain known to occur in people with fibromyalgia and MS, that likely occurs in people with Lyme disease.

How to get rid of lyme pain?

Sleep also lowers inflammation cytokines that lead to Lyme pain. Get 7-9 hours of sleep a night. To do this use good sleep hygiene, sleep herbs and supplements, and/or sleep prescriptions. See Sleep in Lyme Disease: The Basic Steps , Sleep: The Natural Medicines, and Sleep: The Prescription Medicines.

How to lower cytokines in Lyme disease?

So one strategy to lower pain in Lyme disease is to take herbs and supplements that may support lowering cytokines. These include curcumin and liposomal glutathione. Low dose naltrexone (LDN), a prescription medicine, can also lower cytokines.

What is the best supplement for lyme disease?

Magnesium is a useful supplement that supports muscle relaxation. The salt forms of magnesium that are most helpful for this are Magnesium Malate and Magnesium Citrate.

What is the best medicine for nerve pain?

Lyrica , Neurontin (gabapentin), Gabitril , Topamax, and other anti seizure medicines are useful for nerve pain. These medicines bind to the GABA-benzodiazepine receptors and nerve cells to change the transmission of pain by nerves.

Can lyme disease be controlled?

Traditional Pharmaceuticals for Lyme Disease Pain. Pharmaceutical medicines can control pain. However, they carry increased risks of side effects. In general, unlike the functional medicine approaches I described above, these medicines mask the symptoms, but do not fix the underlying problems that give pain.

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Treatment

  • 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. In children under the age of 12, amoxicillin is used because of the possible side effects of doxycycline in small children. The mainstay of treat…
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Side effects

  • 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, thes…
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Prognosis

  • The prognosis after treatment of Lyme disease is generally very good. The majority of people are treated with antibiotics and return to their normal health. The prognosis is best when Lyme disease is diagnosed and treated early and worsens when diagnosis and treatment is delayed. Most patients with early Lyme disease infection recover with antibiot...
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Roles

  • The causes of PTLDS are not yet well understood but our Center is investigating the potential roles of:
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Research

  • Our research has validated PTLDS as a serious and impairing condition. However, the causes of PTLDS are not yet well understood or validated. 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 causa…
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Terminology

  • 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 ar…
See more on hopkinslyme.org

Diagnosis

  • 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.
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