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.
Late Stage Lyme Disease: Symptoms And Treatment
There are three stages of Lyme disease. If you are experiencing the symptoms in the late stage, that means you have already passed through the first two stages of early localized and early disseminated Lyme disease.
During the early localized phase, you may have had a rash associated with the bite given by the infected tick. Symptoms following the bite may have included chills, fever, headaches, fatigue, stiff neck, muscle soreness, and possibly swollen lymph nodes.
If you did not receive the right treatment at the onset, you quickly moved into the next stage. During the early disseminated phase, the Lyme infection started spreading through your body.
Symptoms in the second stage include all of the signs from the early localized stage, only worse. You may also experience vision problems, pain or weakness in your limbs, heart palpitations, and facial paralysis such as bells palsy.
If left untreated, stage two will turn into late stage Lyme disease.
If you are in stage three, or the late disseminated stage, you have been struggling with symptoms for a long while and without treatment specific to Lyme disease.
The symptoms of late stage Lyme disease are genuine and can interfere with daily functioning.
Diagnosis Testing And Treatment
You may have heard that the blood test for Lyme disease is correctly positive only 65% of the time or less. This is misleading information. As with serologic tests for other infectious diseases, the accuracy of the test depends upon how long youve been infected. During the first few weeks of infection, such as when a patient has an erythema migrans rash, the test is expected to be negative.
Several weeks after infection, FDA cleared tests have very good sensitivity.
It is possible for someone who was infected with Lyme disease to test negative because:
If you are pregnant and suspect you have contracted Lyme disease, contact your physician immediately.
* Silver HM. Lyme disease during pregnancy. Infect Dis Clin North Am. 1997 Mar 11:93-7.
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Joint Pain And Swelling
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:
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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What Should I Do If I Am Bitten By A Tick
If you experience a tick bite, the best way to remove it is by taking the following steps:
- Tug gently but firmly with blunt tweezers near the “head” of the tick at the level of your skin until it releases its hold on the skin.
- Avoid crushing the tick’s body or handling the tick with bare fingers as you could exposure yourself to the bacteria in the tick.
- Wash the bite area thoroughly with soap and water.
- DO NOT use kerosene, petroleum jelly , or hot cigarette butts to remove the tick.
- DO NOT squeeze the tick’s body with your fingers or tweezers.
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Why Are Antibiotics The First Line Of Treatment For Lyme Disease
The use of antibiotics is critical for treating Lyme disease. Without antibiotic treatment, the Lyme disease causing bacteria can evade the host immune system, disseminate through the blood stream, and persist in the body. Antibiotics go into the bacteria preferentially and either stop the multiplication of the bacteria or disrupt the cell wall of the bacteria and kill the bacteria . By stopping the growth or killing the bacteria the human host immune response is given a leg up to eradicate the residual infection. Without antibiotics, the infection in Lyme disease can evade the host immune system and more readily persist.
Enhancing Healthcare Team Outcomes
The key to Lyme disease is prevention and this requires an interprofessional team approach. All healthcare workers including the nurse practitioner, pharmacist, and primary care provider should provide patient education on measures to prevent tick bites while hiking or working outdoors. In areas where ticks are common, cleaning up of the environment by removing the underbrush and spraying an insecticide may reduce the tick burden in the area. The outdoors person should be told to wear appropriate garments and be familiar with the skin features of the tick bite. The nurse should educate the patient on how to remove the tick from the skin and when to seek medical assistance. The pharmacist should educate the patient on medication compliance for those who have been confirmed to have acquired Lyme disease.
Nurses should educate parents how to inspect their children for ticks at the end of an outdoor event, in an endemic area. While there are many repellants on the market, it is best to avoid them as the risk of harm is greater than any benefit. If one is going to use a repellant, DEET is the one product that is safe, however, it is not 100% effective. finally, the pharmacist should educate the patient about the harms of taking prophylactic doxycycline a better strategy is to remove the tick as soon as it is visualized.
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Symptoms Of Late Stage Lyme Disease
Your suffering has moved from an occasional inflammation flare-up to chronic pain in your muscles, tendons, and joints. You may have been diagnosed with some form of arthritis. Your headaches have become severe. You may even experience dizziness or vertigo.
Additional symptoms include a stiff neck, sleep disorders like insomnia, and numbness in your outer extremities. You may also lack the ability to focus, and paying attention when having conversations has become difficult. Your fatigue is so bad you sometimes do not want to attempt getting out of bed.
The worse symptom may be that you have tried to get the right help, but doctors have failed to give you an accurate diagnosis. Because of this, you may feel like you are crazy, or your friends and family may not believe you are in pain.
You may be wondering how you were able to reach late stage Lyme disease without proper treatment.
Symptoms Of Lyme Disease
Lyme disease causes a range of symptoms that change and intensify as the Borrelia burgdorferi bacteria, first introduced by the tick, spread to the rest of the body. Untreated cases can cause serious problems or lead to a fatal condition. Whats tricky, too, is that the onset of initial symptoms occurs anywhere from three to 30 days after exposure.
Clinically, there are three stages of Lyme disease: early localized disease, early disseminated disease, and late disseminated disease. Early localized disease, the initial manifestation, is characterized by:
- Bullseye rash and swelling,the most notorious symptom, occurs in 70% to 80% of cases. Clinically referred to as erythema migrans, its appearance variesit can be a different color or shapeespecially in people of color. It arises about a week after exposure to the bacteria.
- Other symptoms of the first stage include fever, fatigue, headache, and joint pain. Very often, those with the conditionespecially if there is no rashfeel as if theyre experiencing the flu.
Disseminated Lyme disease symptoms arise as the bacterial infection works its way to other bodily systems, organs, and structures. Typically a month or more after exposureand potentially chronicsymptoms have changed and include:
In its late disseminated phase, the bacterial infection has begun affecting nerve and joint structures, causing significant complications. Chronic arthritis, continued swelling of the brain , and nerve damage can all result.
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Antibiotics For Lyme Disease
How long to treat patients with Lyme remains an issue of controversy. With traditional antibiotic therapy, lasting 2-4 weeks, 10-20% of patients will have ongoing symptoms including fatigue, joint pain, insomnia and complaints of brain fog. Indefinite long-term treatment is advocated by ILADS , based on a patients symptoms. In contrast, IDSA only recommends 2-4 weeks’ treatment. The two groups are bitter adversaries.
A new study supports short-course treatmentbut is not entirely above criticism.
This study from the Netherlands, reported in the New England Journal of Medicine, was well designed, being randomized and double blind, and with a quasi-placebo group .
The upshot: There were no differences in the outcomes of the three treatment groupsbut some lingering questions remain. Notably, a large percentage of patients had side effects from the antibiotics, some quite serious.
Why is this important?
Lyme has been increasing, especially in the northeastern and upper Midwest portions of the U.S. The CDC now estimates there are about 300,000 cases of Lyme each year, with 30,000 reported cases.
But Lyme can be difficult to diagnose, and the assays miss a lot of patients . So if 20% of patients are left with persistent symptoms, that means that 60,000 people per year are being left with untreated problems that we just dont know what to do with. This study, along with others before it, suggests that longer antibiotics are not the answer.
The fine print:
Lyme Disease Symptoms : Johns Hopkins Lyme Disease Research
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
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Is Cbd Oil For Lyme Disease A Legit Treatment And How Does
Among others, untreated Lyme disease can lead to chronic issues like chronic fatigue syndrome and chronic pain. Ideally, Lyme patients should react as soon as they notice that somethings wrong. Keep in mind that before you can start antibiotic treatment, you need to perform the necessary lab analysis and properly diagnose the condition.
Can Lyme Disease Be Prevented Or Avoided
The best way to prevent Lyme disease is to avoid being bitten by ticks. When you are outdoors, follow these guidelines:
- Avoid areas that are wooded, brushy, or have tall grass.
- Walk in the center of trails.
- Use an insect repellent with at least 20% DEET. It can be put on clothing or sparingly on the skin. Dont apply it to the face or hands of children.
- Treat clothing, tents, or other gear with repellents containing 0.5% permethrin.
- Wear light-colored clothing. This makes it easier to see and remove ticks from your clothes.
- Wear a long-sleeved shirt and long pants. Tuck your pant legs into your socks or boots for added protection.
After you get home, check everything and everyone for ticks.
- Bathe or shower as soon as you can to wash off any ticks that have not attached to you.
- Check your entire body for ticks. Use a mirror for places you cant see. Check your children and your pets. Common tick locations include the back of the knees, groin area, underarms, ears, scalp, and the back of the neck.
- Check any gear you used, including coats, backpacks, or tents.
Tumble dry clothes or blankets on high heat in the dryer for 10 to 15 minutes. This should kill any ticks. If clothes are dirty, wash them in hot water and dry on high heat for 60 minutes.
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Are There Any Risks To Lyme Disease Tests
There is very little risk to having a blood test or a lumbar puncture. If you had a blood test, you may have slight pain or bruising at the spot where the needle was put in, but most symptoms go away quickly. If you had a lumbar puncture, you may have pain or tenderness in your back where the needle was inserted. You may also get a headache after the procedure.
Clinical Characteristics Of Probable Late Lyme Disease
Demographic and clinical characteristics of patients meeting criteria for probable late Lyme were then determined. Illness duration was defined from initial patient-reported date of onset of subjective symptoms coinciding with the present illness. Charts were also reviewed for symptoms reported symptoms were considered present as part of the current illness if mentioned in the medical record after date of illness onset. While group criteria excluded those with a history of physician-documented EM, patients with self-observed rashes either not observed by a physician, or thought not to be EM, were included. Antibiotics considered non-recommended or of insufficient duration for treatment of Lyme disease included all members of the quinolone class of antibiotics, first generation cephalosporins, and five-day courses of azithromycin .
Tests for group differences were performed using chi-square or Kruskal-Wallis tests, as appropriate. Results with a two-sided p< 0.05 were considered statistically significant.
This chart review was approved by the Institutional Review Board of the Johns Hopkins University School of Medicine.
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Stage : Early Localized Disease
Symptoms of Lyme disease usually start 3 to 30 days after the tick bite. One of the earliest signs of the disease is a bulls-eye rash.
The rash occurs at the site of the tick bite, usually, but not always, as a central red spot surrounded by a clear spot with an area of redness at the edge. It may be warm to the touch, but its not painful and doesnt itch. This rash will gradually fade in most people.
The formal name for this rash is erythema migrans.
Some people with lighter skin have a rash thats solid red. Some people with darker skin may have a rash that resembles a bruise.
The rash can occur with or without systemic viral or flu-like symptoms.
Other symptoms commonly seen in this stage of Lyme disease include:
Youll have a general feeling of being unwell. A rash may appear in areas other than the tick bite.
This stage of the disease is primarily characterized by evidence of systemic infection, which means infection has spread throughout the body, including to other organs.
Symptoms can include:
- disturbances in heart rhythm, which can be caused by Lyme carditis
- neurologic conditions, such as numbness, tingling, facial and cranial nerve palsies, and meningitis
The symptoms of stages 1 and 2 can overlap.
Complementary And Alternative Therapies
You should never treat Lyme disease with complementary therapies alone. Only proper antibiotic treatment can cure the disease and avoid complications.
Newsletters and Internet sites have cropped up in recent years advertising untested treatments to people with symptoms of post-Lyme disease syndrome or so-called “chronic Lyme disease” who are frustrated with standard medical treatment. Some remedies may be dangerous and ineffective. Always tell all of your doctors about the herbs and supplements you are using or considering using.
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What Do The Results Mean
The Centers for Disease Control and Prevention recommends a two-test process of your sample:
- If your first test result is negative for Lyme disease, you don’t need any more testing.
- If your first result is positive for Lyme disease, your blood will get a second test.
- If both results are positive for Lyme disease and you also have symptoms of infection, you probably have Lyme disease.
Positive results don’t always mean a Lyme disease diagnosis. In some cases, you can have a positive result but not have an infection. Positive results may also mean you have an autoimmune disease, such as lupus or rheumatoid arthritis.
If your lumbar puncture results are positive, it may mean you have Lyme disease, but you might need more tests to confirm a diagnosis.
If your health care provider thinks you have Lyme disease, he or she will prescribe antibiotic treatment. Most people who are treated with antibiotics in the early stage of disease will make a complete recovery.
Treating What You Dont Know
The other big question is how to treat something with a cause that cant be identified.
Antibiotics are sometimes prescribed on the theory that B. burgdorferi might still be hiding out in the body somewhere. However, although there have been anecdotal short-term successes, Marques said no studies have shown sustained benefits from antibiotics to people with chronic Lyme disease or those with post-Lyme disease syndrome.
The majority of people who contract Lyme and are treated for it with a course of antibiotics do get better with time.
But those who dont 10 to 20 percent, according to Marques review of the research fall into the post-Lyme disease syndrome category.
Those people continue to experience persistent or intermittent symptoms a year after completing the antibiotics therapy.
Children appear less likely to develop long-term symptoms as are those who dont delay antibiotics or have less severe cases of Lyme in the first place.
In cases of chronic Lyme, people who test negative for the disease despite symptoms could be infected with another tick-borne illness or have an autoimmune disorder or other problem.
How to treat these long-term symptoms is still a mystery.
For now, Marques and her team are working on identifying biomarkers and other ways to find out definitively whether Lyme disease is to blame for the symptoms.
That additional research is becoming more critical.
Researchers have predicted higher tick numbers in some parts of the country this summer.
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