Lyme disease has reached epidemic proportions in the United States and especially in Connecticut. With the number of Lyme infections rising, the need for Lyme disease education is at an all time high. In this article, we’ll review the questions I am most commonly asked about Lyme disease. My hope is by sharing these questions and answers that much of the suffering caused by Lyme disease will be alleviated and that many more people will learn the signs and symptoms of Lyme disease so they can get early treatment, thus preventing chronic disease.
What is Lyme disease?
Lyme disease is the most common vector-borne disease in the United States. It is transmitted to humans by the bite of an infected Ixodes scapularis tick. This tick is better known by its common name the blacklegged or deer tick. Lyme disease is caused by the bacterial spirochete Borrelia burgdorferi.
How common is Lyme disease?
In 2009, the CT statewide incidence of Lyme disease was 122 cases per 100,000 people. The Centers for Disease Control and Prevention (CDC) has indicated that reported cases of Lyme disease are about 10% of actual cases that meet their surveillance criteria. This means that up to 90% of cases that meet these criteria are not being reported. Currently, the CDC reports there are over 300,000 new cases of Lyme disease each year in the United States. This means that each year 6 times more people would contract Lyme than HIV/AIDS.
There are over 1700 confirmed new cases of Lyme disease in Connecticut each year. If CDC estimates are correct the actual number of new cases of Lyme would be more than 17,000 in CT alone. Over 25% of people who become infected with Lyme are children.
What are the textbook or most common symptoms of Lyme disease?
A red rash with central clearing (bull’s eye), called erythema migrans (EM), is diagnostic of Lyme disease. Studies show that 40-69% of people have the classic EM rash; however, physicians report that this rate may be as low as 10%. This rash may not occur at the bite site. Patients may present with multiple EM rashes or other types of rashes. Fifty to seventy-five percent of those infected with Lyme disease do not remember having had a tick bite.
The most common symptoms of acute Lyme disease include flu-like symptoms, monoarthritis (for example, a swollen, painful knee), migratory joint and muscle pains, fatigue, headache, cognitive dysfunction (often called brain fog) and migratory paresthesias (a numb or tingly feeling). Severe cases of Lyme can cause heart block (a blockage in the heart’s electrical system), meningitis (inflammation of the covering of the brain and spinal cord) or encephalitis (inflammation of the brain itself), amongst other problems.
What other symptoms may be seen in Lyme disease?
Borrelia burgdorferi has been called the “New Great Imitator” as over 350 medical conditions have been noted to be caused or associated with Lyme disease in peer reviewed medical journals. Historically, Syphilis is known as the first “Great Imitator.” Patients may present with new onset anxiety or cognitive dysfunction. Others may have uncontrolled abdominal pain, irritable bowel syndrome or even Crohn’s disease or Ulcerative Colitis. Hormonal dysregulation is common. Impacted hormones range from estrogen, progesterone and testosterone to thyroid and cortisol. Headaches and visual changes are also common. Because Lyme can present with many different, seemingly unrelated symptoms, patients may be misdiagnosed with conditions including depression, anxiety, migraine headaches, fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome and leaky gut, Parkinson’s disease and multiple sclerosis.
Are the symptoms of Lyme disease in children the same as they are in adults?
No. Most frequently the symptoms of Lyme disease in children look quite a bit different than in adults. Children under the age of 15 account for 25% of reported cases of Lyme disease. While some children present with the more common features of Lyme disease in adults many of them present in ways that are much different than adults. Many children develop sleep problems, including nightmares. New onset bedwetting may also develop. Daytime urinary frequency is often seen. Some children present with odd skin sensations, others with discomfort when being touched. They often complain of headaches that can range from mild to debilitating. Commonly, children present with isolated neuropsychiatric and gastrointestinal changes. This makes the diagnosis of Lyme disease in children more challenging as well as more crucial.
Neuropsychiatric changes can range from mild to downright scary to parents and teachers. Children may experience acute changes in personality, abrupt behavioral changes, uncharacteristic outbursts, and trouble tolerating their normal environment. Some children have outbursts of rage; this is often directed at one family member or schoolmate. Children may also have problems with speech and motor skills leading to rapidly declining grades.
Difficulty in processing auditory input or changes in the ability to focus with the eyes often appears as a lack of focus leading a child to be misdiagnosed with attention deficit hyperactivity disorder (ADHD). Some children with Lyme disease develop problems with sensory integration and have a difficult time focusing when they are exposed to multiple stimuli at once. This leads to confusion and, in turn, poor behavior.
Happy children may become irritable and sad. Children may have an abrupt change in their mood to the point they are depressed, anxious, psychotic, and even suicidal. If this is the case, it is important to consider Lyme disease as well as co-infection with Bartonella henselae. Some previously outgoing and gregarious children become withdrawn or reluctant to play. Children may develop odd, repetitive behaviors and/or tics. When several of these symptoms are seen in the same child, they may be misdiagnosed with autism.
Children and adolescents often exhibit Lyme disease symptoms in the GI tract. These include abdominal pain, heartburn, nausea, vomiting, diarrhea and blood in the stool. Gastrointestinal Lyme disease may mimic colitis or Crohn’s disease. Small intestinal bacteria overgrowth may be present. H. pylori are frequently resistant to treatment if Lyme disease is also present in the GI tract.
Do deer ticks carry other diseases than Lyme disease?
Yes. Co-infections are other infections that can be transmitted by the bite of an infected tick. One common co-infection is Babesia microti. Babesia symptoms include sweats (day or night and often drenching), unrelenting headaches or head pressure, heart palpitations, a burning sensation in the feet, and muscle and bone pain. Ehrlichia and anaplasma are infections that can come on quickly and cause very high fevers, chills and intense fatigue, although they can also present as moderate headache and fatigue. In addition to neuropsychiatric changes mentioned above, Bartonella hensalae can cause purple stretch marks and make stretch marks and surgical scars change from skin tone to a more purple color. When symptoms are all on one side of the body, Bartonella is often the culprit.
How is the diagnosis of Lyme disease made?
The diagnosis of Lyme is often made using the criteria set forth in the CDC surveillance case definition of Lyme disease, including a two step laboratory testing strategy: an antibody screen followed by a confirmatory Western blot. These tests are known to miss 20-50% of patients who have Lyme disease. One of the biggest problems with Lyme disease testing is that the best tests available are blood tests and Lyme disease does not live in the blood. A recently published study of monkeys experimentally infected with Borrelia burgdorferi found that the C6 antibody test gave false negative results in all of the monkeys that were treated with antibiotics and in more than ½ of those that were untreated. Currently there are no blood tests that can tell your doctor that you do or do not have Lyme; they can only tell if you have been exposed to Borrelia. Your clinical condition, supported by blood tests, is the only accurate measure of active Lyme disease. A negative blood test does not mean you do not have active Lyme disease; it may mean your immune system is not producing antibodies to Borrelia; it is up to your physician to determine if you have active infection. Lyme disease is a clinical diagnosis supported by blood tests.
In Connecticut, if your doctor is considering the diagnosis of Lyme disease, it very well may be the correct diagnosis. Studies have shown that in the Northeast, as many as 70% of ticks may be infected with Lyme and 50% of ticks may carry other tick-borne illnesses. In 2009, tick drags conducted by researchers at the University of New Haven found that a startling 90% of ticks carried Lyme disease and 30% carried Babesia microti.
What are the current treatment recommendations for new deer tick bites?
There are several schools of thought as to how new tick bites should be handled. One school takes a watch and wait approach. You should circle the date the tick was discovered on your calendar and keep a close eye out for any symptoms to develop. Unfortunately symptoms may take 4-6 weeks from the time of infection to develop at which time Lyme has had an opportunity to spread throughout the body.
Another school of thought suggests a one time dose of an antibiotic to prevent Lyme infection. This approach is based upon a small study that showed a decrease in development of the classic EM rash with a one time dose of an antibiotic; however this study did not look at prevention of Lyme disease. It only looked at preventing the rash. I would propose that this approach is flawed because the goal in prophylactic treatment is to prevent the entire disease, not merely a rash.
A third school of thought suggests that Lyme disease is extremely prevalent, especially in CT, and that any deer tick bite is very high risk. Given the high risk of a deer tick bite prophylactic antibiotics should be given at a standard treatment dose for 3-4 weeks. If no symptoms develop by the end of this time period antibiotics would be discontinued. If symptoms developed treatment would be continued. It is important to remember that several of the drugs that are commonly used to treat Lyme disease are used safely for years at a time to treat acne. Given the high prevalence of Borrelia burgdorferi infection in deer ticks in the state of Connecticut for most patients, the risk on an untreated deer tick bite is likely much higher than the potential risks of short term antibiotic use.
What are the current recommendations for acute Lyme disease?
There are two general approaches to the treatment of acute Lyme disease. One approach is treatment with one antibiotic for 3-4 weeks and, in specific situations, up to 6 weeks. If symptoms persist past this time, the patient is then diagnosed with a post-Lyme syndrome. Their Lyme infection is considered 100% eradicated. Any persistent symptoms are not due to active infection.
Another approach involves treatment with one or more antibiotics as well as supportive therapies for as long as the patient has symptoms. Borrelia has a long reproductive cycle and several strategies for persistence so treatment should be continued 2 months past the time when the patient is symptom-free prior to being discontinued.
In the monkey study mentioned earlier, it was also noted that Borrelia burgdorferi persisted in 100% of monkeys who were treated with 28 days of the antibiotic doxycycline when it was started 4 months after they were initially infected; suggesting this duration of therapy may be insufficient to eradicate infection when initiation of treatment is delayed. Additionally, 73% of monkeys treated for 90 days with intravenous and then oral antibiotics had persistent infection. The findings of this study support the notion that longer-term treatments for Lyme disease are likely necessary. This study did not look at the response to treatment initiated a couple of weeks after infection, however common sense dictates that early diagnosis and treatment will likely lead to better long-term outcomes.
Is there such a thing as Chronic Lyme Disease and, if so, how should it be treated?
While this is a hotly debated topic, it is becoming more and more clear that a chronic infectious state does exist. Scientific research continually supports the ability of Borrelia to persist in mammals despite short and long-term courses of antibiotics, and new studies are being published all the time. Doctors consistently see their patients improve with longer courses of antibiotics and/or natural treatments. While specific treatment protocols can only be made after a comprehensive history and physical performed by a qualified healthcare professional, treatments should be continued 2 months past the time when the patient is symptom-free prior to being discontinued.
Borrelia has several mechanisms by which it evades detection by your immune system and can persist in the body. Two of the more talked about forms are the cystic form and biofilms. Both these forms require specific types of treatment and typically need to be addressed before a patient can get better. Given the complexity of Lyme disease and its co-infections, patients often seek care from a physician who specializes in the treatment of tick borne illnesses.
I have heard many horror stories about Lyme disease. Is it possible to be cured?
Lyme disease can cause a tremendous amount of suffering, but there is hope. Many people have seen the Lyme documentary “Under Our Skin.” In this film there are several patients who are extremely disabled from Lyme disease. They were fortunate enough to find doctors who were compassionate, dedicated and willing to provide them with appropriate treatment against all odds. Several of the most ill patients featured are now perfectly fine. They came from a place of severe disability and handicap to leading normal lives once again. Their paths to health, like many who suffer from Lyme disease, were not easy, but they believed in the guidance of their doctors and in their own ability to heal.
Some people heal from Lyme quickly, others may be extremely ill for years. Lyme does not discriminate. It affects all people of all ages, but many different ways. Lyme disease is not always an easy diagnosis to make. My hope is that physicians, healthcare providers and scientists will continue to work together to develop better diagnostic tests and treatment approaches. I also hope that each of you reading this article will share it with one of your friends. Public awareness through education is possibly the most critical step in decreasing the suffering caused by Lyme disease. Awareness will lead to earlier recognition of the symptoms of Lyme disease and earlier treatment. Great patient and physician education will lead to initiation of more effective treatments and more rapid, long lasting recoveries from this complex disease.
Tom Moorcroft, DO is an Osteopathic physician practicing at Origins Of Health in Berlin, CT. For more information please visit his website www.OriginsOfHealth.com. The documentary “Under Our Skin” is available for online viewing with www.hulu.com.