Why You Might Need To See A Llmd:
- Your Lyme disease test results were negative, but you still have symptoms of Lyme disease.
- Youve been treated for Lyme disease in the past but still have symptoms, which could indicate chronic Lyme disease.
- Youve been treated or are being treated for common misdiagnoses of Lyme disease, such as Rheumatoid Arthritis or Chronic Fatigue Syndrome, but your symptoms havent gone away.
- Your physician doesnt believe in Lyme disease, chronic Lyme disease, or Post-Treatment Lyme Disease Syndrome.
Even patients who dont fall into the above categories may simply feel safer in the hands of a LLMD who is familiar with the various ways Lyme and other tick-borne diseases present themselves.
How Can Lyme Disease Be Prevented
Unfortunately, there is currently no vaccine for Lyme disease. But you can avoid Lyme disease by avoiding tick bites, checking for ticks, and removing ticks promptly, before they become lodged in the skin. Some tips:
Avoid tick playgrounds: Ticks like low-level shrubs and grasses, particularly at the edges of wooded areas. If youre hiking, try to stay in the center of the trail and avoid bushwhacking. Walk on cleared paths or pavement through wooded areas and fields when possible.
Dress appropriately: Long pants with legs tucked into socks and closed-toed shoes will help keep ticks away from skin. Light-colored clothing helps make ticks visible.
Insect repellant: Products that contain DEET repel ticks but do not kill them and are not 100 percent effective. Use a brand of insect repellent that is designated as child-safe if your child is 1 year or older. For infants, check with your pediatrician about what brands are safe to use. You can also treat clothing with a product that contains permethrin, which is known to kill ticks on contact.
Shower after outdoor activities are done for the day. It may take four to six hours for ticks to attach firmly to skin. Showering will help remove unattached ticks.
- all parts of the body that bend: behind the knees, between fingers and toes, underarms and groin
- other areas where ticks are commonly found: belly button, in and behind the ears, neck, hairline, and top of the head
- anywhere clothing presses on the skin
Do I Need To See An Infectious Disease Specialist To Get Tested For Lyme Disease
No, you do not need to see an infectious disease specialist.
As noted above, any type of physician should be able to order the correct diagnostic tests, interpret your test results, and provide antibiotics to treat Lyme disease. This is especially true the earlier the disease is caught.
In fact, American Lyme Disease Foundation points out that waiting for an appointment with an infectious disease or other type of specialist can actually delay your diagnosis and treatment. If you were bitten by a tick, notice symptoms of Lyme disease, or believe youre at risk for Lyme or another tick-borne disease, its important that you make an appointment with a doctor immediately even if its your primary care physician.
That said, there are plenty of reasons why you may want to consult with, or get a second opinion from, someone with specific experience with Lyme disease. In other words, you may want to make an appointment with a Lyme-literate doctor . Read on to learn more.
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‘best’ Hospitals Worst For Chronic Lyme Disease
Johns symptoms began overnight last May. A sharp right-side belly pain followed overnight by facial numbness and pain, diminished vision, loss of short-term memory, profound exhaustion and “foggy” brain.
Severe inflammation then erupted throughout Johns body in the prostate, stomach, colon, both lungs and sinuses. His primary care doctor sent him to numerous specialists, but none found an answer. Weeks later, John lost half his blood volume from GI problems and landed in one of Boston’s “best” hospitals.
Countless tests and biopsies came back negative and John was sent home with steroids, which made him sicker. He went to a different Boston hospital and explained his symptoms to a team of neurologists, emphasizing that he was losing his vision and had no depth perception. The attending neurologist replied, “That isnt necessarily a bad thing some of the world’s best artists don’t see things the way the rest of us do it’s why they can make such magnificent art.”
John told him to leave.
A psychiatrist then showed up, unrequested, and declared that Johns symptoms must be psychosomatic because there was no medical explanation. Incredulous, John explained that he had no mental health history, had just finished a masters degree and didnt see how psychology could explain the overnight onset of severe belly pain, vision loss, and systemic inflammation. The psychiatrist shrugged and offered him Ativan, a drug used to treat anxiety disorders and depression.
Lyme Disease Frequently Asked Questions
If you have not done so already, remove the tick with fine-tipped tweezers.
The chances that you might get Lyme disease from a single tick bite depend on the type of tick, where you acquired it, and how long it was attached to you. Many types of ticks bite people in the U.S., but only blacklegged ticks transmit the bacteria that cause Lyme disease. Furthermore, only blacklegged ticks in the highly endemic areas of the northeastern and north central U.S. are commonly infected. Finally, blacklegged ticks need to be attached for at least 24 hours before they can transmit Lyme disease. This is why its so important to remove them promptly and to check your body daily for ticks if you live in an endemic area.
If you develop illness within a few weeks of a tick bite, see your health care provider right away. Common symptoms of Lyme disease include a rash, fever, body aches, facial paralysis, and arthritis. Ticks can also transmit other diseases, so its important to be alert for any illness that follows a tick bite.
Moody KD, Barthold SW, 1991. Relative infectivity of Borrelia burgdorferi in Lewis rats by various routes of inoculation.external iconAm J Trop Med Hyg 44: 135-9.
There are no reports of Lyme disease being spread to infants through breast milk. If you are diagnosed with Lyme disease and are also breastfeeding, make sure that your doctor knows this so that he or she can prescribe an antibiotic thats safe for use when breastfeeding.
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What Are The Risk Factors For Post Treatment Lyme Disease
Risk factors for Post Treatment Lyme Disease include:
- Delay in diagnosis
- Increased severity of initial illness
- Presence of neurologic symptoms
Increased severity of initial illness, the presence of neurologic symptoms, and initial misdiagnosis increase the risk of Post Treatment Lyme Disease. PTLD is especially common in people that have had neurologic involvement. The rates of Post Treatment Lyme Disease after neurologic involvement may be as high as 20% or even higher. Other risk factors being investigated are genetic predispositions and immunologic variables.
In addition to Borrelia burgdorferi, the bacteria that causes Lyme disease, there are several other tick-borne co-infections that may also contribute to more prolonged and complicated illness.
How Is Lyme Disease Diagnosed
Though several types of tests do exist for the diagnosis of Lyme disease, the best tests for a Lyme disease diagnosis are blood tests, also known as serological tests. These tests are indirect, meaning they dont detect the infecting bacteria or its antigens but rather the antibodies an infected persons body produces in response to these antigens.
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Why And What To Do When Antibiotics Fail
When used in the early stages of Lyme disease, antibiotics can work. The problem is that Lyme disease can go chronicand come along with multiple co-infections and other complications such asbiofilm that can many times render antibiotics ineffective. The longer you have Lyme disease also plays a huge factor,because your immune system can become severely weakened, and antibiotics cannot strengthen your immune system .
Envita Medical Centers doesn’t make any guarantee of outcomes. Results are not typical and will varyfromperson to person and should not be expected.
How Is Lyme Disease Treated
Lyme disease is most often treated with antibiotics such as doxycycline, amoxicillin, or cefuroxime for several weeks. Please complete the full course of antibiotics as prescribed, even if your child is feeling better, in order to kill all the bacteria.
If your child doesn’t respond to oral antibiotics, or if the Lyme disease is affecting the central nervous system, antibiotics may need to be given intravenously . This usually doesnt require your child to be hospitalized. In many cases, a nurse can come to your home to administer the IV or teach you or another family member how to do it.
Anti-inflammatory medicine may be prescribed for children who are experiencing pain from arthritis.
Traditional Lyme Disease Tests Are Not Specific Enough
Lyme disease is caused by the spiral-shaped bacteria Borrelia. There are multiple species and strains of Lyme borreliae . Therefore, tests must be targeted to these multiple species and strains in order to be able to detect them. If a patient is infected with a species or strain of Lyme borreliae that their test cant detect, they will get a false-negative test result and thus risk missing their diagnosis. This can be costly and dangerous.
Many ELISA and Western blot Lyme disease tests are only equipped to detect one strain of one species of Borrelia: Borrelia burgdorferi B31 . This means that those tests are missing infections caused by other strains and/or species of Lyme borreliae.
In one internal study designed to test the validity of the IGeneX ImmunoBlot against traditional Western blot tests, a total of 132 patients were tested by both Lyme Western blots and Lyme IB. 43 patients were seropositive on the ImmunoBlot, and 14 were positive on standard Western blots prepared from a mixture of two species for Bb ss B31 and 297. Thus 29 of the 43 patients tested negative on Western blots i.e., the Western blot totally missed their infections with strains other than Bb ss B31 and 297.
With such limited tests, patients infected with non-B31 species and strains e.g., B. mayonii, B. californiensis, or European species are at risk of receiving false negatives and missing the chance to treat their diseases.
What Kind Of Doctor Tests For Lyme Disease
In fact, any kind of doctor can test you for Lyme disease. However, that doesnt mean its a good idea to have your dermatologist or podiatrist order the diagnostic tests. Many people simply see their family physician or primary care doctor to get diagnosed and treated for Lyme.
There are also doctors who specialize in Lyme disease and other tick-borne illnesses, called Lyme-literate doctors, who you may want to consult instead more on that a little later in this article.
Finally, there are other types of specialists you may or may not need to consult with depending on the duration and severity of your symptoms.
For example, many patients wonder if they need to see an infectious disease specialist.
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What Is A Lyme
A LLMD is a physician whose experience with Lyme disease patients makes them familiar with the vast range of symptoms, co-infections, and complications associated with the disease at various stages. Because of this knowledge and expertise, many patients also find LLMDs more open-minded and understanding of their experiences, especially if theyre having a hard time getting an accurate diagnosis from another physician.
But how do you know if you need to see a LLMD? Below are some common reasons, any or all of which may apply to you.
A Pioneer In Lyme Disease
Our program is led by Allen Steere, MD, one of the world’s foremost experts on Lyme disease. Dr. Steere discovered the illness in 1976 and laid the foundation for understanding the many manifestations of the disease, including Lyme arthritis .
Today, Dr. Steere is researching why some patients with Lyme arthritis have persistent joint inflammation after using antibiotic therapy to eliminate the Lyme disease bacterium. This research is leading to improved diagnostic and treatment capabilities for such patients.
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Symptoms Of Post Treatment Lyme Disease
- Include severe fatigue, musculoskeletal pain, & cognitive problems
- Can significantly impact patients health and quality of life
- Can be debilitating and prolonged
Our research indicates the chronic symptom burden related to PTLD is significant. Although often invisible to others, the negative impact on quality of life and daily functioning is substantial for PTLD sufferers.
The chronic symptom burden related to Lyme disease is considerable, as shown on the left side of the graph above, and statistically significantly greater than the aches and pains of daily living experienced by the control group, on the right.
Cdc Supports The Development Of New Tests
New tests may be developed as alternatives to one or both steps of the two-step process. Before CDC will recommend new tests, they must be cleared by the Food and Drug Administration . For more details, see: Recommendations for Test Performance and Interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease.
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The Best Test For Lyme Disease
Lyme disease is a tick-borne illness spread by Lyme borreliaebacteria which includes, but is not limited to, Borrelia burgdorferi sensu stricto. The Centers for Disease Control and Prevention estimate that there are 400,000 cases of Lyme disease annually, making Lyme a serious public health concern that only stands to grow as the spread of ticks affects disease endemicity and seasonality.
One of the biggest challenges of fighting Lyme disease is providing patients with accurate diagnostic tests. Without access to the best tests for Lyme disease, its impossible to diagnose this treatable disease in a timely manner. When the disease isnt caught in time, it can spread throughout the body and cause chronic health problems that could otherwise be avoided with earlier detection and treatment.
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.
- Report being bitten by a tick, or
- Live in, or have recently visited, a tick-infested area.
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Growing Need For Lyme Disease Experts And Research
The estimated incidence of Lyme disease in the United States has been steadily rising, to approximately 476,000 new cases annually. Despite antibiotic treatment, approximately 10-20% of these new infections will lead to distressing and potentially disabling symptoms, such as severe fatigue, joint and muscle pain, neurologic symptoms, and cognitive problems that may last for months or years.
There is limited expertise in treating the acute and chronic aspects of tick-borne diseases, making it difficult for patients to find high-quality, specialized care. In addition, little research has been done to determine which treatments are most effective for persistent symptoms, which can interfere with daily activities and work.
Like COVID-19 long-haulers, many people with tick-borne diseases were completely well until their infection precipitated a cascade of chronic, multi-system effects, says Brian Fallon, MD, director of the Cohen Center for Health and Recovery from Tick-Borne Diseases. A comprehensive evaluation takes time. In addition, the cost of care for patients with chronic symptoms can be prohibitive, requiring multiple visits to physicians who may not be aware of the latest research on tick-borne illnesses. Our center will be the first to address all of these issues by offering access to affordable care with experienced physicians while at the same time integrating research and physician training into our clinical model.
What Are The Side Effects Of Lyme Disease Treatments
Antibiotics, like all medications, have the potential for side effects. Any antibiotic can cause skin rashes, and if an itchy red rash develops while on antibiotics, a patient should see their physician. Sometimes symptoms worsen for the first few days on an antibiotic. This is called a Herxheimer reaction and occurs when the antibiotics start to kill the bacteria. In the first 24 to 48 hours, dead bacterial products stimulate the immune system to release inflammatory cytokines and chemokines that can cause increased fever and achiness. This should be transient and last no more than a day or two after the initiation of antibiotics.
The most common side effect of the penicillin antibiotics is diarrhea, and occasionally even serious cases caused by the bacteria Clostridium difficile. This bacterial overgrowth condition occurs because antibiotics kill the good bacteria in our gut. It can be helpful to use probiotics to restore the good bacteria and microbiome balance.
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