Chronic Lyme Dos And Don’ts
Chronic Lyme disease is an ongoing Borrelia burgdorferi infection that can involve any body system or tissue. The infection produces a wide range of symptoms and signs, which can be debilitating for some patients. Common symptoms include severe fatigue, migratory musculoskeletal pain, headaches, and impaired memory. Unfortunately, chronic Lyme disease is complex and often misunderstood, which means that many patients will struggle to obtain the care they need to regain their health. Every patient concerned about Lyme disease and tick-borne illness should know the following.
How Long Does It Take To Show Signs Of Lyme Disease
Lyme disease is characterized by various symptoms. The discomforts are very varied and affect many organs. If a person becomes infected with the Borrelia burgdorferi bacterium by means of a tick bite, a reddish and annular lesion on the skin may appear after several days or weeks this would be the first manifestation.
In the first month of exposure to the tick, which in most cases the patient does not remember, early localized infection occurs, which is usually manifested by nonspecific flu-like symptoms and the appearance of migratory erythema, which is a papule or macula that extends painlessly to take the form of a target with the clearer center. Since a quarter of patients do not have migratory erythema, it is not uncommon for this first stage to go unnoticed and doctors receive a patient with symptoms of an early disseminated infection , after weeks or months of exposure. This stage could be initiated, for example, as a general condition with intense discomfort, diffuse pains, headache, asthenia or new cutaneous symptoms: annular lesions smaller than migratory erythema, or the rare presence of lymphocytoma cutis .
Considering the inconstancy and clinical variability of borreliosis in this phase, it has been called the great imitator.
In any case, and if we exclude the almost constant fatigue/lethargy, it seems that the most relevant and frequent presentation symptoms are neurological, followed by the musculoskeletal and dermatological signs.
Current Challenges And Future Priorities
Patients with PTLD represent a substantial burden to the United States health care system. In a large, health insurance claims analysis of 47 million members, estimated total direct medical costs from Lyme disease were between $712 million and $1.3 billion per year, with a significant portion of these specifically due to PTLD-related costs . The same study found that the adjusted odds of any PTLD-related symptom diagnosis following Lyme disease was 4.77 higher than age-, sex-, enrollment year-, region- and payer type-matched controls without Lyme disease, and that those patients with Lyme disease who went on to have at least one PTLD symptom had over twice the average total health care costs as those who did not . These cost estimates do not reflect additional indirect, non-medical, and lost productivity costs to patients, which may be substantial in a population with a chronic and significant illness impact on quality of life . Novel preventative approaches to reduce incidence of new Lyme disease cases, as well as physician and community educational interventions to increase awareness and reduce diagnostic delays and misdiagnosis, are needed to reduce costs and improve patient outcomes.
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Defining Patient Subgroups: Post
Patients with persistent symptoms related to Lyme disease likely represent a heterogeneous population, which includes previously untreated patients, as well as those treated patients who remain symptomatic. As a result, some will manifest primarily patient-reported symptoms while others will present with symptoms in conjunction with objective, physical findings. This heterogeneity is further complicated by variation in terminology and the definitions used by different groups in the field.
Figure 3. A schematic of clinical- and research-defined patient subgroups among those with persistent symptoms associated with Lyme disease . The size of each patient subgroup is not meant to represent actual population frequency, as prevalence data is extremely limited. IDSA, Infectious Diseases Society of America ILADS, International Lyme and Associated Diseases Society CLD-PT, Chronic Lyme Disease-Previously Treated CLD-U, Chronic Lyme Disease-Untreated IgG, Immunoglobulin G CFS, Chronic Fatigue Syndrome FM, Fibromyalgia.
Who Is At Risk For Lyme Disease
Anyone can get a tick bite. But people who spend lots of time outdoors in wooded, grassy areas are at a higher risk. This includes campers, hikers, and people who work in gardens and parks.
Most tick bites happen in the summer months when ticks are most active and people spend more time outdoors. But you can get bitten in the warmer months of early fall, or even late winter if temperatures are unusually high. And if there is a mild winter, ticks may come out earlier than usual.
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What Is Late Lyme Disease
Lyme disease, also known as Lyme borreliosis, is caused by an infection with the bacteria Borrelia burgdorferi. This bacteria is disseminated through tick bites. Infected ticks usually bite small mammals, who do not develop any kind of infection from the bacteria. When humans are exposed to B. Burgdorferi from a tick bite, however, they can develop Lyme disease.
People who work outside or spend time in woodland areas, where there is greater potential for exposure to tick bites, are most at risk of infection.
Lyme disease is a condition which progresses in stages:
If My Animal Is Positive On The Assay Should He/she Be Treated For Lyme Disease
If your animal is displaying clinical signs of Lyme disease and is positive on the Lyme Multiplex assay, it is advisable to discuss treatment options with your veterinarian. If your animal appears healthy, discuss the risks and benefits of treatment and develop a monitoring plan with your veterinarian.
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What Are Signs And Symptoms Of The Third Stage Of Lyme Disease
Late stage Lyme disease can result when treatment is unsuccessful or started too late due to unrecognized symptoms or misdiagnosis. The late disseminated stage occurs months or years after initial infection and can have a major impact on a patients health and quality of life. Late Lyme arthritis is a third stage Lyme disease manifestation that involves fluid accumulation and pain in joints, particularly in the knee joints. Late neurologic disease is a 3rd stage condition that can also be debilitating and difficult to diagnose. Late disseminated Lyme disease symptoms include a variety of symptoms that are often neurologic in origin including: numbness in extremities, mental fogginess and concentration problems, and difficulty following conversations or processing information.
Ongoing Symptoms Of Lyme Disease
A few people who are diagnosed and treated for Lyme disease continue to have symptoms, like tiredness, aches and loss of energy, that can last for years.
It’s not clear why this happens to some people and not others. This means there’s also no agreed treatment.
Speak to a doctor if your symptoms come back, or do not improve, after treatment with antibiotics.
The doctor may be able to offer you further support if needed, such as:
- referral for a care needs assessment
- telling your employer, school or higher education institution that you require a gradual return to activities
- communicating with children and families’ social care
Page last reviewed: 05 July 2021 Next review due: 05 July 2024
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Questions To Ask Your Doctor
- I found a tick embedded in my skin, but I cant get it out. What should I do?
- Ive been bitten by a tick. Do I need to be seen?
- Do I need a blood test to confirm Lyme disease?
- Which antibiotic is best for me?
- How long will I have to take the antibiotic?
- What tick or insect repellent should I use for me or my child?
- How long will the symptoms last?
- What should I do if I still dont feel well a long time after I was bitten?
Chronic Lyme: What Happens When Lyme Goes Untreated
The Lyme community typically uses the term chronic Lyme disease to describe a range of physical, cognitive, and emotional symptoms that crop up after getting Lyme disease and persist for months to years after infection.
The risk of chronic Lyme increases the longer a Lyme infection goes untreated or undertreated. In other words, patients are more likely to recover fully if their Lyme infection is detected and treated as early as possible after the discovery of a tick bite. This stage is usually marked by symptoms such as fevers, chills, muscle aches, and sometimes rashes.
When left untreated or undertreated, however, Lyme disease can spread throughout the body and affect:
- The central nervous system
- Muscles and joints
As Lymedisease.org points out, these symptoms can evolve, disappear, and reappear at different times.
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What Are The Symptoms Of Chronic Lyme Disease
Despite some skepticism in the medical community, chronic Lyme disease is a growing epidemic in the U.S. This stems partly from the shortcomings of many of the officially recommended Lyme disease tests, which leave too many patients with untreated infections that then become persistent and debilitating.
The following article will cover what you should know about chronic Lyme and provide an introductory but non-exhaustive chronic Lyme disease symptoms checklist.
How Does Lyme Disease Present For Different Age Groups
There isnt one age group where Lyme presents more or less severely: Lyme disease presents similarly in babies, kids, and adults. However, Mordue notes that there is substantial variability of disease presentation and severity between people. In other words, two siblings who are both bitten by a tick while out in the woods may have very different symptoms. Children, however, are more likely to get it than adults since children typically spend more time outdoors, and because tall grasses are proportionally taller for young children.
Fatigue, headache, and fever are common symptoms of early Lyme disease. Joint pain is another potential symptom: Some children may present with a swollen, painful joint as their first symptom of Lyme disease, though this is considered a later manifestation, Szantyr explains. While the knee is most commonly written about, it can be wrists, elbows, hips, ankles, even the TMJ. If your child is old enough to tell you something hurts, take note, write it on the calendar, check their temperature and remember what you have been doing and whether there is a possibility of tick exposure For younger children, notice if they are limping, if they are not playing in their usual way, if they seem a little less like themselves.
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What Are The Symptoms Of Lyme Disease
Lyme disease may evolve through several phases or stages which can overlap, causing symptoms that may involve the skin, joints, heart or nervous system.
Early Lyme disease typically causes a reddish rash or skin lesion known as erythema migrans . The rash starts as a small red spot at the site of the tick bite 1 to 4 weeks after the bite. It expands over a period of days or weeks, forming a circular, triangular, or oval-shaped rash. The rash may look like a bulls eye because it appears as a red ring that surrounds a clear center area. The rash can range in size from that of a dime to the entire width of a person’s back. As infection spreads, several rashes can appear at different sites on the body.
If the infection goes untreated, you may develop multiple areas of rash, paralysis of facial muscles , heart block or areas of numbness or abnormal sensation .
Untreated late Lyme disease, which occurs months to a year after the initial infection, is most commonly associated with recurring episodes of swollen joints typically of large joints such as the knee. Additionally some patients may develop difficulty concentrating, which is called brain fog .
What Do You Do If There’s A Tick Under Your Skin
Use a pair of fine-tipped tweezers to remove it as soon as possible. Pull upward with steady pressure. If parts of the tick are still in your skin, try to get those with the tweezers, too. After everything is out, clean the bite area with rubbing alcohol or soap and water.
You probably wonât get infected if you remove the tick within 36 to 48 hours.
How do you throw away a tick?
Put it in soapy water or alcohol, stick it to a piece of tape, or flush it down the toilet.
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Living With Lyme Disease
Most people treated in the early stages of Lyme disease make a quick and complete recovery. Some may experience symptoms for a few weeks after treatment. If you were treated for Lyme disease but you still dont feel well, call your family doctor. He or she can make sure there isnt something else wrong. They can help you find ways to ease your symptoms. Some patients have found relief with treatments typically used for chronic fatigue syndrome or fibromyalgia.
Other things you can do to help manage Lyme disease include:
- Educate yourself.There is a lot of inaccurate information to be sorted through, especially on the internet. Ask your doctor if you have questions.
- Track your symptoms.Keep a diary of your sleep patterns, eating habits, exercise routines, and how youre feeling. You or your doctor may be able to make connections between them.
- Take care of yourself.Eat a healthy diet. Exercise as regularly as you can. Get plenty of rest.
Find support. It can be hard to not feel well and not know why. Some people may think your symptoms arent real. Talk to friends and family. If they cant offer support, talk with a counselor who can help you.
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How To Avoid Tick Bites
To reduce the chance of being bitten:
- cover your skin while walking outdoors and tuck your trousers into your socks
- use insect repellent on your clothes and skin products containing DEET are best
- stay on clear paths whenever possible
- wear light-coloured clothing so ticks are easier to see and brush off
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The Experience Of Lyme Disease
In our book, Conquering Lyme Disease: Science Bridges the Great Divide, we review several of the key features of Lyme disease that can make the experience of this illness so challenging, including:
- The politically charged climate
- The protean nature of manifestations of the illness
- The waxing and waning course of symptoms
- The psychological ramifications of having an “invisible” chronic illness and the experience of invalidation
- The challenge of having a disease that affects the brain and sensory system
- The impact of uncertainty surrounding diagnosis, treatment, and prognosis
Symptoms Of Early Stage Lyme Disease
According to the Centers for Disease Control and Prevention , early-stage Lyme disease symptoms crop up within 3 to 30 days after exposure and can include but are not limited to:
- Joint pain and swelling
- Swelling of the lymph nodes
- Erythema migrans , a bulls-eye-shaped rash that appears at the site of the tick bite
Early Lyme disease does not always appear the same in all patients. For example, up to 30% of patients dont remember experiencing a bulls eye rash.
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How To Prevent Lyme Disease
The best way to prevent Lyme disease is to prevent tick bites, explains Dr. Kaufman, and there are steps you can take to reduce your risk, especially if you live in or are going to be visiting an area where ticks are prevalent.
Some of Dr. Kaufmans recommended strategies include:
- If youre hiking, choose your trail wisely. The ticks that cause Lyme disease live in moist and humid environments, especially in wooded or grassy areas, so its best to avoid walking through thick brush and other vegetation, notes Dr. Kaufman. Aim to walk in the middle of the trail, where youre less likely to rub up against bushes.
- Wear clothing that covers the skin. Long sleeves and pants can help reduce the likelihood of Lyme disease.
- Invest in Environmental Protection Agency-registered insect repellents to repel ticks. You can spray these on your skin and clothing. According to the CDC, these products typically contain DEET, picaridin, IR3535, oil of lemon eucalyptus, para-menthane-diol or 2-undecanone.
- Conduct daily tick checks on yourself, your family members and your pets. People should be thorough about tick checks, and pay extra attention to certain areas of the body, like under the arms, in and around the ears and in and around all head and body hair, notes Dr. Kaufman.