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What Are Long Term Symptoms Of Lyme Disease

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Category: Health Published: October 9, 2015

If treated, Lyme disease does not last for years. However, for some people, the after-effects of the disease can linger for months and sometimes even years. Alternative medicine providers call this condition Chronic Lyme disease, but this title is simply wrong. For a person who has been infected with Lyme disease and then treated, the bacteria that causes Lyme disease is measurably no longer present in his body, even though he may still feel some symptoms. The correct title for this condition is therefore Post-treatment Lyme Disease Syndrome.

Lyme disease is an infection caused by a bacteria known as Borrelia burgdorferi. This bacteria is delivered to humans through tick bites. From the bite site, the bacteria can enter the bloodstream and spread throughout the body. Usually, but not always, an infectious tick bite causes a characteristic red rash at the site of the bite. Other symptoms include fever, muscle soreness, headache, fatigue, and dizziness. In a few cases, symptoms can also include mood swings, memory loss, and sleep disturbance. If left untreated for too long, Lyme disease can lead to nerve damage, thereby causing shooting pain, numbness, and even paralysis.

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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

Chronic Lyme Disease Vs Post

Patients typically use the term chronic Lyme disease to describe the cluster of symptoms that started after getting Lyme disease and that persist despite having received a course of antibiotic treatment which has been deemed curative by the Infectious Diseases Society of America. Patients say, “I’m not cured. I have symptoms now that I never had before Lyme disease. I’m fatigued 90% of the day. My muscles ache. My brain is in a fog. I can’t think clearly any more. I’m super sensitive to light and sound. What is going on? Chronic Lyme disease does exist – I’m a living example of it!”

Whatever one calls it, the experience is the same. Most often these patients experience profound fatigue, pain, and/or cognitive impairment. Mild to moderate levels of depression and anxiety may also accompany these symptoms, as the functional limitations can lead to social isolation, inability to work, and loss of sense of one’s identity as a provider, caretaker, or friend. Sometimes patients find themselves identifying with Job – the just and good man in the Bible whose life was wrecked by illness, death of loved ones, and economic disaster he felt tormented by God.

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The Numbers On Chronic Lyme

Because Lyme disease is commonly missed or misdiagnosed, statistics vary on how many Lyme patients go on to experience chronic symptoms. The following research nonetheless paints a basic picture of the problem.

  • An estimated 5-20% of patients may have chronic symptoms after getting Lyme disease, according to the Columbia University Irving Medical Center.
  • The treatment failure rate for chronic Lyme disease patients was estimated at 26-50% in 2004, compared to 16-39% for early Lyme patients, according to Lymedisease.org.
  • Up to 15-40% of late-stage Lyme patients develop neurological disorders, which are responsible for many common symptoms of chronic Lyme disease.

Experts dont know for sure why some people experience persistent symptoms, even with treatment. However, some believe the Lyme infection may trigger an auto-immune response that manifests in the chronic symptoms detailed below.

What Are The Treatments For Lyme Disease

Loudoun Lyme 10k/5k/1k

Lyme disease is treated with antibiotics. The earlier you are treated, the better it gives you the best chance of fully recovering quickly.

After treatment, some patients may still have pain, fatigue, or difficulty thinking that lasts more than 6 months. This is called post-treatment Lyme disease syndrome . Researchers don’t know why some people have PTLDS. There is no proven treatment for PTLDS long-term antibiotics have not been shown to help. However, there are ways to help with the symptoms of PTLDS. If you have been treated for Lyme disease and still feel unwell, contact your health care provider about how to manage your symptoms. Most people do get better with time. But it can take several months before you feel all better.

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Can Lyme Disease Be Prevented

To prevent Lyme disease, you should lower your risk of getting a tick bite:

  • Avoid areas where ticks live, such as grassy, brushy, or wooded areas. If you are hiking, walk in the center of the trail to avoid brush and grass.
  • Use an insect repellent with DEET
  • Treat your clothing and gear with a repellant containing 0.5% permethrin
  • Wear light-colored protective clothing, so you can easily see any ticks that get on you
  • Wear a long-sleeve shirt and long pants. Also tuck your shirt into your pants and your pant legs into your socks.
  • Check yourself, your children, and your pets daily for ticks. Carefully remove any ticks you find.
  • Take a shower and wash and dry your clothes at high temperatures after being outdoors

Centers for Disease Control and Prevention

Has Niaid Looked At The Potential Benefits Of Long

Yes. NIAID has funded three placebo-controlled clinical trials on the efficacy of prolonged antibiotic therapy for treating PTLDS. The published results were subjected to rigorous statistical, editorial, and scientific peer review.

These trials were designed to ensure that several key parameters were addressed:

  • The susceptibility of B.burgdorferi to the antibiotics used
  • The ability of the antibiotics to both cross the blood-brain barrier and access the central nervous system and to persist at effective levels throughout the course of therapy
  • The ability of the antibiotics to kill bacteria living both outside and inside mammalian cells
  • The safety and welfare of patients enrolled in the trials

The first clinical trial, which included two multicenter studies, provided no evidence that extended antibiotic treatment is beneficial. In those studies, physicians examined long-term antibiotic therapy in patients with a well-documented history of previous Lyme disease but who reported persistent pain, fatigue, impaired cognitive function, or unexplained numbness. Those symptoms are common among people reporting PTLDS. Patients were treated with 30 days of an intravenous antibiotic followed by 60 days of an oral antibiotic.

In 2016, a clinical trial conducted in the Netherlands also concluded that in patients with persistent symptoms attributed to Lyme disease, longer term treatment with antibiotics did not provide additional benefits compared with shorter term regimens.

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What Are The Worst Symptoms Of Lyme Disease

Its important to acknowledge flu-like symptoms if you live in an area where ticks are present or you have recently been in a wooded region, because when Lyme disease is left untreated, it can lead to severe health consequences. Very often, the worst symptoms of Lyme disease are ones that you may not have even known could happen after a tick bite.

According to the Centers for Disease Control and Prevention, the most severe symptoms of Lyme disease include:

  • Severe headaches
  • Facial paralysis, a condition known as Bells palsy
  • Muscle, joint, tendon, and bone aches
  • Heart disorders, a condition known as Lyme carditis
  • Additional skin rashes other than the one that presents at the onset of infection
  • Dizzy spells
  • Nerve pain
  • Arthritis

While not all flu-like symptoms you feel will be caused by Lyme disease, it is important to pay attention to both your body and your recent surroundings if you have been in an area frequented by ticks. One trick to telling the difference between Lyme disease and a typical flu is the consistency of the symptoms. Lyme flu-like symptoms tend to come and go, whereas typical flu symptoms will be persistent until your body has recovered, after which they will subside.

Lyme disease can cause permanent damage. Knowing you have Lyme as early as possible is key to overcoming the symptoms and avoiding any possible long-term effects.

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Joint Pain And Swelling

Long term Effects of Lyme Disease [Part 1]

About half of people with untreated Lyme get chronic arthritis. Joint pain and damage most commonly occur in the knee. But Lyme can also affect other joints, like the:

  • Shoulders

  • Wrists

These joints may feel swollen and warm to the touch. Lyme arthritis is more common in older people with Lyme disease.

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The Possible Causes Of Post

The mechanisms underlying post-Lyme disease symptoms are not known and are likely to be multifactorial. Possible explanations include persistent infection with B. burgdorferi, other tick-borne infections, part of the expected resolution of symptoms after treatment, post-infective fatigue syndrome, autoimmune mechanisms, and intercurrent conditions.

In many patients, these symptoms probably represent the natural evolution of response after therapy, as the percentage of patients reporting symptoms after antibiotic treatment decreases over time. In one study of patients treated for erythema migrans, 34% had symptoms at 3 weeks, 24% at 3 months, and 17% at 12 months . In other patients, a post-infective fatigue syndrome may be triggered by Lyme disease, as has been shown to occur with other infections. Prolonged fatigue after infections is relatively common, and it can be disabling and persistent. A recent study showed that post-infective fatigue syndrome could be predicted by the severity of the acute illness, and its incidence was similar after the different infections . In this cohort, the case rate for provisional post-infective fatigue syndrome was 35% at six weeks, 27% at three months, and 9% at 12 months rates similar to those reported in patients treated for erythema migrans . The mechanisms that are triggered during the acute illness and that sustain the persistent symptoms in post-infective fatigue syndrome are currently unknown.

How Long Do Symptoms Of Lyme Disease Last

The symptoms of Lyme disease can last a long time. A study published in the New England Journal of Medicine indicates that patients with chronic neurologic Lyme disease were ill for up to 14 years. Two additional studies sponsored by the National Institutes of Health found that people with chronic manifestations of Lyme disease were ill an average of 4.7 and 9 years.

The symptoms of Lyme disease can be severe. Patients often report having extreme fatigue, sleep disturbances, mood disturbances, poor memory and concentration, headaches, dizziness, neck pain, tingling in hands and feet, and joint pain.

We do not know how long symptoms of Lyme disease last. But chronic and debilitating manifestations have been described, such as:

  • Lyme encephalopathy 1,3
  • Pediatric acute-onset neuropsychiatric syndrome PANS 6
  • Lyme carditis 7
  • Post-treatment Lyme fatigue Post-Lyme disease 9
  • Neuropathic pain 10
  • Persistent symptoms after Lyme disease 2
  • Lyme disease with co-infection 11
  • Some Lyme disease patients fail treatment. They may fail to get better or they may relapse. Understandably, patients want to know how long do symptoms of Lyme disease last? But there is no definitive, universal answer. Every patient is different and the cause behind persistent symptoms continues to be debated.

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    Related Articles:
  • Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994 151:1571-1583.
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    Chronic Lyme Dos And Donts

    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.

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    How Is Lyme Disease Treated

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    For early Lyme disease, a short course of oral antibiotics such as doxycycline or amoxicillin is curative in the majority of the cases. In more complicated cases, Lyme disease can usually be successfully treated with three to four weeks of antibiotic therapy.

    In patients who have non-specific symptoms after being treated for Lyme disease and who have no evidence of active infection , studies have shown that more antibiotic therapy is not helpful and can be dangerous.

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    What Are The Signs Of Lyme Disease

    Looking out for symptoms of Lyme disease, and checking yourself for ticks after you go to green spaces where they may be present is very important. Prompt tick removal can reduce your chances of acquiring Lyme disease.

    Tick bites aren’t usually painful and sometimes only cause a red lump to develop where you were bitten. However, in some cases they may cause:

    • swelling

    Rapidly recognising symptoms can ensure that if you are developing the disease you can receive the earliest diagnosis and treatment from your GP. If you are bitten by an infected tick your symptoms will typically develop one to four weeks after being bitten, however, they can appear anytime between three to 30 days after exposure.

    Symptoms include a spreading circular red rash, which may appear as a bulls-eye rash like the image below, as well as non-specific flu-like symptoms. Although a lot of people associate the disease with the rash, one-third of people donât report seeing one.

    Read More

    Scientists Think They’ve Unlocked The Secret Of Long

    Scientists may have discovered a new way of tackling the lingering, debilitating effects of Lyme disease, the tick-borne illness that can lead to flu-like symptoms and a rash called erythema migrans.

    The latest research suggests that dead fragments of Borrelia burgdorferi, the bacterium that causes Lyme disease, continue to hang around in the body and can cause unhealthy inflammation in the central and peripheral nervous systems even after treatment.

    This might explain why some people who get Lyme disease don’t make a full recovery after a few weeks of taking antibiotics instead, they experience ongoing pain, fatigue, and trouble with their cognitive thinking, a condition known as Post-Treatment Lyme Disease Syndrome .

    “About 10-35 percent of patients treated for erythema migrans or early Lyme disease have persistent or intermittent musculoskeletal, cognitive, or fatigue complaints of mild to moderate intensity at 6 to 12 months of follow up,” write the researchers in their .

    “Other notable symptoms include joint pain, headache, lower back pain, irritability, paresthesia, sleep issues, and depression.”

    Patients with PTLDS usually get better eventually, but it can take a long time for people to feel fully well again. There’s currently no proven treatment for the condition, as there is for Lyme disease itself.

    The research has been published in Scientific Reports.

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    Where Is Lyme Disease Prevalent

    LD is spreading slowly along and inland from the upper east coast, as well as in the upper midwest. The mode of spread is not entirely clear and is probably due to a number of factors such as bird migration, mobility of deer and other large mammals, and infected ticks dropping off of pets as people travel around the country. It is also prevalent in northern California and Oregon coast, but there is little evidence of spread.

    In order to assess LD risk you should know whether infected deer ticks are active in your area or in places you may visit. The population density and percentage of infected ticks that may transmit LD vary markedly from one region of the country to another. There is even great variation from county to county within a state and from area to area within a county. For example, less than 5% of adult ticks south of Maryland are infected with B. burgdorferi, while up to 50% are infected in hyperendemic areas of the northeast. The tick infection rate in Pacific coastal states is between 2% and 4%.

    Late Lyme Disease Symptoms

    Lyme Disease: Theories for Longer-Term Manifestations

    Late Lyme Disease Symptoms may include inflammation, joint pain/stiffness, and sometimes neurological symptoms. Symptoms of late Lyme disease occur months to years after a tick bite.

    Muscle and joint symptoms may occur in 80% of individuals with Lyme disease who have not been treated with antibiotics. 20% of individuals experience joint pain, 50% experience intermittent episodes of arthritis , and fewer than 10% experience persistent arthritis of a single joint or a few joints.

    Neurologic symptoms chronic pain, difficulty with memory, slowed thought processes, and odd sensations, such as numbness or tingling. However, late neurologic manifestations can include anxiety, depression, or personality/mood changes. These symptoms are more rare and are usually caused by something other than Lyme disease.

    Skin symptoms may include skin nodules, swelling, thinning of patches of skin, which usually occurs on the hands, feet, knees, or elbows.

    Post-Late Lyme disease syndrome nonspecific symptoms, such as headache, fatigue, and joint pain, may linger for months after the treatment of Lyme disease has ended. However, these symptoms gradually resolve, and there is no evidence that antibiotics improve or speed up the resolution of post-Lyme disease symptoms.

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    How Can I Help Prevent Lyme Disease In A Child

    There is no vaccine for Lyme disease. A child who has had the disease doesnt build up immunity and can get it again. But you can help prevent Lyme disease by protecting your child from tick bites.

    Ticks cant bite through clothing, so dress your child and family in:

    • Long-sleeved shirts tucked into pants
    • Socks and closed-toe shoes
    • Long pants with legs tucked into socks

    Choose light-colored clothing so that ticks can be easily seen. Check your child often for ticks, including:

    • Behind the knees, between fingers and toes, in underarms, and in the groin
    • In the belly button
    • In and behind the ears, on the neck, in the hairline, and on top of the head
    • Where underwear elastic touches the skin
    • Where bands from pants or skirts touch the skin
    • Anywhere else clothing presses on the skin
    • All other areas of the body and hair

    Run fingers gently over the skin. Run a fine-toothed comb through your child’s hair to check for ticks.

    Other helpful tips include:

    • When possible, use cleared or paved paths when walking through wooded areas and fields.
    • Shower after outdoor activities are done for the day. It may take up to 4 to 6 hours for ticks to attach firmly to skin. Showering may help remove any loose ticks.

    Use insect repellents safely. The most common used against ticks are:

    Check your pets for ticks. Talk with your pets veterinarian about tick repellent medicine.

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