By: Alicia Jerome MS, RDN
As the weather warms up and people head outdoors, the concern for Lyme disease increases. It’s common knowledge that Lyme disease can be attributed to a tick bite, but many are unaware of what to do and what can happen. Symptoms may range from mild discomfort where the bite is to bedridden disability. Because diagnosing Lyme can be difficult, many people who actually have Lyme may be misdiagnosed with other conditions for years.
How common is Lyme disease?
The Center for Disease Control reports close to 500,000 new Lyme disease diagnoses each year. However, many experts believe the true number of cases is much higher.
Where does Lyme disease come from?
Not every tick bite results in Lyme disease. The bite must come from an infected blacklegged tick (or deer tick) that has been attached to the skin for 24-48 hours. There is a significantly reduced chance that the tick has transmitted the bacterium into the bloodstream if the tick is found before it can become engorged. However, not everyone notices if they were bitten and not every tick is removed properly. Research is showing that Lyme disease may be carried by other insects as well.
Where are infected ticks found?
Infected ticks can be found all across the United States, but higher incidences are found in the Northeast, Mid-Atlantic, Upper Midwest, Pacific coast, and especially northern California1. The ticks like to attach to moist and dark areas of the body like armpits, groins, waistbands, and the scalp.
What symptoms to look for?
Initial symptoms of Lyme disease include muscle or joint aches, fever, chills, headache, fatigue, swollen lymph nodes, and commonly, a rash, occasionally in the shape of a bull’s eye2. Although many people develop a different type of Lyme rash or none at all.
What to do if you’ve been bitten?
If one finds or suspects they have been bitten they should seek treatment immediately. Most Lyme disease tests will look for antibodies to the infection, which, unfortunately, don’t develop for several weeks. So, if a negative test appears, it is advised to get another test a few weeks later and still proceed with treatment1.
What is the treatment?
The typical first response is antibiotics. Most times, this will address the infection and there will be no further problems. The International Lyme and Associated Diseases Society (ILADS) published treatment guidelines which contains a rigorous assessment of the evidence and found treatment failure rates ranging from 16% to 39% for early treatment3. After the initial antibiotics, some patients may experience pain, fatigue, or problems thinking that lasts greater than 6 months. This is called post-treatment Lyme disease syndrome (PTLDS). There is no established treatment for PTLDS and long-term antibiotics have not proven effective4. It is common for Lyme patients to be misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and various mental health issues, including depression5.
What are the long-term therapies?
Depending on the doctor and the facility, more or varied antibiotics may be given. Others consider non-traditional, complementary or holistic treatments which might include extensive herbs, supplements, nutritional changes, and immune system-boosting therapies. With the growing awareness of Lyme disease more clinics are popping up with specialized and focused treatment.
What else could be going on?
Ticks can transmit other bacteria, parasites, and viruses which can develop into co-infections. Both Lyme disease and these co-infections can become complicated because of biofilm. Biofilm is a protective barrier for bacteria that develops on surfaces and makes getting rid of the bacteria very difficult – think antibiotic resistance and more. This turns Lyme disease into a chronic condition with multiple complications.
In a LymeDisease.org survey of over 3,000 patients with chronic Lyme disease, more than half reported laboratory-confirmed co-infections, with 30% having two or more. According to Dr. Richard Horowitz, “The existence of these co-infections explains why some people with Lyme remain chronically ill even after treatment.6”
How to prevent infection from ticks?
In wooded and grassy areas where ticks could reside, cover up all exposed skin and wear insect repellant. A hat provides extra protection. Avoid high grassy areas, especially in the summer months. Wear light colored clothing so you can easily identify a dark tick. Change your clothes after being outdoors and inspect your body and scalp for ticks. Also, check your pets for ticks7.
- “Lyme Disease.” MedlinePlus, U.S. National Library of Medicine, https://medlineplus.gov/lymedisease.html.
- “Lyme Disease.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 24 Oct. 2020, https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651.
- “Lyme Disease Treatment Trends.” ILADS, 25 Apr. 2019, https://www.ilads.org/treatment-trends-for-lyme-disease/.
- Melia, Michael T., et al. “Time for a Different Approach to Lyme Disease and Long-Term Symptoms: Nejm.” New England Journal of Medicine, 31 Mar. 2016, https://www.nejm.org/doi/10.1056/NEJMe1502350.
- “An Overview of Lyme Disease Symptoms.” org, https://www.lymedisease.org/lyme-basics/lyme-disease/symptoms/.
- Martin, L. “Tick-Borne Co-Infections Are the Rule, Not the Exception.” org, https://www.lymedisease.org/tick-borne-coinfections/.
- Office of the Commissioner. “Lyme Disease: Symptoms, Treatment, and Prevention.” U.S. Food and Drug Administration, FDA, https://www.fda.gov/consumers/consumer-updates/ticks-and-lyme-disease-symptoms-treatment-and-prevention