{"id":52386,"date":"2022-07-06T09:30:16","date_gmt":"2022-07-06T13:30:16","guid":{"rendered":"https:\/\/www.singlecare.com\/blog\/?p=52386"},"modified":"2023-08-05T09:49:17","modified_gmt":"2023-08-05T13:49:17","slug":"chronic-lyme-disease","status":"publish","type":"post","link":"https:\/\/www.singlecare.com\/blog\/chronic-lyme-disease\/","title":{"rendered":"What is chronic Lyme disease?"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">Most people have heard of Lyme disease. It\u2019s an infection <\/span><span style=\"font-weight: 400;\">most commonly caused by one of three pathogenic species of the spirochete <\/span><i><span style=\"font-weight: 400;\">Borreliella.<\/span><\/i><span style=\"font-weight: 400;\"> In the United States, it is most often caused by the bacteria <\/span><i><span style=\"font-weight: 400;\">Borrelia burgdorferi (<\/span><\/i><span style=\"font-weight: 400;\">or <\/span><i><span style=\"font-weight: 400;\">B. burgdorferi)<\/span><\/i><span style=\"font-weight: 400;\"> and is transmitted by mosquitoes, fleas, and deer ticks. It\u2019s <\/span><a href=\"https:\/\/www.epa.gov\/sites\/default\/files\/2017-02\/documents\/print_lyme_2016.pdf\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">common<\/span><\/a><span style=\"font-weight: 400;\">\u2014about 20,000-30,000 new cases are reported annually, though many more likely go undetected. Chronic Lyme disease is a term that\u2019s not quite as well-known or understood. In fact, some people even question its existence. So what is it, and what should you do if you suspect you may have it?<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">What is chronic Lyme disease?<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">Lyme disease occurs in two stages: acute and chronic.<\/span><\/p>\n<p><b>Acute Lyme<\/b><span style=\"font-weight: 400;\"> is an infectious disease that occurs right after the insect bite that caused the infection. This is the stage where it\u2019s most treatable because it\u2019s yet to spread through the body, says Jyotsna Shah, Ph.D., president of <\/span><a href=\"https:\/\/igenex.com\/leadership\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">IGeneX<\/span><\/a><span style=\"font-weight: 400;\">, a company that specializes in tick-borne diseases. Erythema migrans (EM), the bull\u2019s-eye rash, is considered a telltale sign of early Lyme disease, but only about <\/span><a href=\"https:\/\/www.cdc.gov\/lyme\/signs_symptoms\/index.html\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">70% of people<\/span><\/a><span style=\"font-weight: 400;\"> have this symptom, according to the Centers for Disease Control and Prevention (CDC). <\/span><span style=\"font-weight: 400;\">EM is a rash that appears at the site of the tick bite, usually within seven to 14 days after the bite (but the rash can range from three to 30 days after the bite)<\/span><span style=\"font-weight: 400;\">. <\/span><span style=\"font-weight: 400;\">So, unless you see a tick bite and have the bull\u2019s-eye rash, you might not realize you\u2019re infected and may not seek treatment for Lyme.<\/span><\/p>\n<p><b>Chronic Lyme disease<\/b><span style=\"font-weight: 400;\"> is what happens when the bacteria from the initial infection spreads to muscles, joints, and organs. The original infection could have occurred months or even years ago, says Shah. This can happen if acute Lyme is not diagnosed and goes untreated. Or, if the original treatment doesn\u2019t work.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The risk of acute Lyme disease transitioning into a chronic condition increases the longer a Lyme infection goes untreated. Patients are more likely to fully recover from Lyme disease if the infection is discovered and treated as early as possible after finding a tick bite.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">It\u2019s estimated that 5% to 15% of patients with a positive diagnosis of Lyme disease will have<\/span> <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC5102277\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">symptoms that persist<\/span><\/a><span style=\"font-weight: 400;\"> even after treatment. This is known as post-treatment Lyme disease syndrome (PTLDS) or post-Lyme disease syndrome (PLDS). These terms are often used interchangeably with chronic Lyme. For the majority of patients, these symptoms improve gradually over six months to one year.\u00a0<\/span><\/p>\n<h3><span style=\"font-weight: 400;\">Is chronic Lyme disease real?<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">Chronic Lyme disease is a real, and serious condition. However, there is inconsistency in\u00a0 diagnosis and treatment in the medical community because chronic Lyme disease isn\u2019t well-defined and is difficult to definitively diagnose.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">There is no one clinical definition for chronic Lyme. It\u2019s often used as<\/span> <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC2430045\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">an umbrella term<\/span><\/a><span style=\"font-weight: 400;\"> for a few groups of patients:\u00a0<\/span><\/p>\n<ol>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">People with late Lyme disease, where the original infection wasn\u2019t treated and has progressed<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">People with Lyme disease symptoms that continue even after treatment<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">People presenting \u201cnonspecific signs and symptoms of unclear cause\u201d who are given a chronic Lyme disease diagnosis based on unproven and\/or non-validated laboratory tests and clinical criteria<\/span><\/li>\n<\/ol>\n<p><span style=\"font-weight: 400;\">Lyme disease symptoms mirror many other common conditions, and it\u2019s easy to miss an insect bite. There is a <\/span><a href=\"https:\/\/www.cdc.gov\/lyme\/diagnosistesting\/index.html\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">blood test<\/span><\/a><span style=\"font-weight: 400;\"> for Lyme, but it commonly produces false negative results.<\/span> <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC5176185\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Factors<\/span><\/a><span style=\"font-weight: 400;\"> like the stage of the disease, type of sample, and variations in tests all affect the sensitivity and interpretation of tests for Lyme disease. If the infection was recent, antibodies may not yet be present at the time of testing.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">If it\u2019s been some time since the original spirochete infection, as is usually the case with chronic Lyme borreliosis, \u201cthe active infection may no longer be picked up on a blood test,\u201d says Raphael Kellman, MD,<\/span> <span style=\"font-weight: 400;\">founder of <\/span><a href=\"https:\/\/www.kellmancenter.com\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Kellman Wellness Center<\/span><\/a><span style=\"font-weight: 400;\"> in New York City. \u201cBy that point, a person\u2019s symptoms are often more related to the overactivation of the immune system, rather than the acute bacterial infection.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cIn the medical field, we like to fit patients in neat little boxes and solve for their ailments,\u201d says Shah. \u201cIn relation to tick-borne illness, this can be extremely difficult due to the fact that Lyme disease can present as over 100 symptoms, and no two cases are alike.\u201d\u00a0<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">Chronic Lyme disease symptoms<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">Chronic symptoms of Lyme disease aren\u2019t always clear-cut and manifest similarly to other conditions, which can lead to misdiagnosis. \u201cChronic Lyme disease is often used 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,\u201d Shah says. Common persistent symptoms include:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Long-lasting, severe fatigue<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Neurological symptoms such as brain fog, cognitive impairment, or facial palsy<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Sensory sensitivity, particularly to lights and sounds<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Anxiety or depression<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Joint pain\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Muscle aches<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Neuropathy (tingling and numbness)<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Gastrointestinal issues, such as abdominal pain, nausea, blood in the stool, or chronic diarrhea<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">\u201cMany tick-borne infections go misdiagnosed for months because these nonspecific symptoms mirror other illnesses,\u201d Shah explains, adding that these symptoms can mimic chronic fatigue syndrome, fibromyalgia, ALS, Alzheimer\u2019s disease, depression, insomnia, and autoimmune disorders such as rheumatoid arthritis and multiple sclerosis (MS).<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Chronic Lyme can also trigger an auto-immune response or make a person more susceptible to other infections, systemic inflammations, and imbalances in the gut microbiome, according to Dr. Kellman.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">If you suspect you have chronic Lyme, your first step should be to a primary care provider you trust who can help you diagnose by eliminating other potential illnesses.<\/span><\/p>\n<h2><span style=\"font-weight: 400;\">Chronic Lyme disease treatment protocols<\/span><\/h2>\n<p><span style=\"font-weight: 400;\">Unfortunately, there is no standard chronic Lyme disease treatment or therapy because the symptoms can vary so greatly between individuals. On top of that, there is no FDA-approved treatment for prolonged cases of Lyme disease. However, patients will often undergo a variety of treatment that includes antibiotics, IV therapy, and lifestyle changes.\u00a0<\/span><\/p>\n<h3><span style=\"font-weight: 400;\">Antibiotics<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">Antibiotic treatment is the first line of defense in Lyme disease. Most people with acute Lyme will respond well to a two- to four-week course of antibiotics, such as:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/www.singlecare.com\/prescription\/oracea\"><span style=\"font-weight: 400;\">Doxycycline<\/span><\/a><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/www.singlecare.com\/prescription\/amoxicillin\"><span style=\"font-weight: 400;\">Amoxicillin<\/span><\/a><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/www.singlecare.com\/prescription\/ceftriaxone-sodium\"><span style=\"font-weight: 400;\">Ceftriaxone<\/span><\/a><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/www.singlecare.com\/prescription\/azithromycin\"><span style=\"font-weight: 400;\">Azithromycin<\/span><\/a><span style=\"font-weight: 400;\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">Approximately 10% to 15% of individuals who are taking antibiotics to treat early Lyme disease experience a brief worsening of symptoms. This is called a <\/span><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK557820\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Jarisch-Herxheimer reaction<\/span><\/a><span style=\"font-weight: 400;\">, which is when substances released by the dying bacteria cause a brief worsening of symptoms. This reaction occurs within 24 hours after starting antibiotics, usually continues for a day or so, and then resolves spontaneously. If this happens, antibiotic therapy should not be stopped, but should instead continue as originally planned<\/span><span style=\"font-weight: 400;\">.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">For patients with <\/span><a href=\"https:\/\/www.cdc.gov\/lyme\/postlds\/index.html\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">chronic Lyme<\/span><\/a><span style=\"font-weight: 400;\">, long-term antibiotics do not typically improve symptoms.<\/span><\/p>\n<h3><span style=\"font-weight: 400;\">Intravenous (IV) therapy<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">If oral antibiotic therapy fails, IV antibiotics are sometimes used to treat nervous system issues that arise from chronic Lyme disease and have been shown to have<\/span> <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC3177589\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">some success<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n<h3><span style=\"font-weight: 400;\">Supportive medication<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">Physicians will often prescribe medications that help to <\/span><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC4847307\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">alleviate symptoms<\/span><\/a><span style=\"font-weight: 400;\"> of chronic Lyme. These are not a cure but can help to improve quality of life. For example:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/www.singlecare.com\/prescription\/gabapentin\"><span style=\"font-weight: 400;\">Gabapentin<\/span><\/a><span style=\"font-weight: 400;\"> for nerve pain<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Antidepressants for mood symptoms<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">Analgesics such as <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/ibuprofen\"><span style=\"font-weight: 400;\">ibuprofen<\/span><\/a><span style=\"font-weight: 400;\"> or <\/span><a href=\"https:\/\/www.singlecare.com\/prescription\/meloxicam\"><span style=\"font-weight: 400;\">meloxicam<\/span><\/a><span style=\"font-weight: 400;\"> for muscle aches or joint pain<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The drugs used will vary depending on the type of symptoms you have.<\/span><\/p>\n<h3><span style=\"font-weight: 400;\">Diet<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">Nutrition cannot cure chronic Lyme disease, but it can help with some of the symptoms. Removing inflammatory foods and adding more nutrient-dense, whole foods help support immunity.<\/span><\/p>\n<p><b>RELATED: <\/b><a href=\"https:\/\/www.singlecare.com\/blog\/anti-inflammatory-diet\/\"><b>The best diet for inflammation<\/b><\/a><\/p>\n<h3><span style=\"font-weight: 400;\">Support groups<\/span><\/h3>\n<p><span style=\"font-weight: 400;\">Living with disease is already difficult and adding doubt from loved ones and the health community can make the experience even more painful. Seeking out local or online support groups through organizations like<\/span> <a href=\"https:\/\/www.lymedisease.org\/lyme-disease-support-groups\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">lymedisease.org<\/span><\/a><span style=\"font-weight: 400;\">, the<\/span> <a href=\"https:\/\/lymediseaseassociation.org\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Lyme Disease Association<\/span><\/a><span style=\"font-weight: 400;\">, and others can help people with chronic Lyme disease connect with others in similar situations. Clinicians may also recommend psychotherapy to help with anxiety or depression.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Finding the right treatment can take significant trial and error. Don\u2019t give up. There is always new research becoming available. Stay up to date by following sites like the<\/span> <a href=\"https:\/\/www.ilads.org\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">International Lyme and Associated Diseases Society<\/span><\/a><span style=\"font-weight: 400;\"> (ILADS).\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Most people have heard of Lyme disease. It\u2019s an infection most commonly caused by one of three pathogenic species of the spirochete Borreliella. In the United States, it is most often caused by the bacteria Borrelia burgdorferi (or B. burgdorferi) and is transmitted by mosquitoes, fleas, and deer ticks. It\u2019s common\u2014about 20,000-30,000 new cases are [&hellip;]<\/p>\n","protected":false},"author":135,"featured_media":51971,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[8029],"tags":[790],"coauthors":[8856],"class_list":["post-52386","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-education","tag-chronic-disease","wpautop"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.4 (Yoast SEO v27.4) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>What is chronic Lyme disease? Is it real?<\/title>\n<meta name=\"description\" content=\"Chronic Lyme disease is a bacterial infection that has spread to the muscles, joints, and organs. 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