I grew up in New York and it wasn’t uncommon for a friend or family member to be diagnosed with Lyme disease. Their complaints typically consisted of rash with or without joint pain. They were typically given antibiotics for some period of time and told they were healed. But all through medical school, residency, and working as an Emergency Medicine attending, I can’t remember ever being taught to consider Lyme disease, seeing a patient present with it, or personally diagnosing a case of Lyme. If you weren’t living in NY or Connecticut, it wasn’t even considered. When I started seeing patients with chronic health conditions presenting with chronic fatigue and pain that wasn’t explained or improved with traditional and integrative therapies, I began to wonder what I was missing. It wasn’t long before it became clear that Lyme disease was certainly one of the things I should be considering in these ‘difficult to diagnose and treat’ cases. Many of these patients have seen numerous doctors, been to specialty facilities, been told that ‘it was all in their head’ by not only the medical community, but also often by their own family and friends.
Lyme disease is caused by the spirochete (a ‘twisted’ bacterium) Borrelia burgdorferi and is transmitted to humans through the bite of an infected tick.* “Classic” symptoms of acute illness typically include fever, fatigue, and what is known as an Erythema Migrans (bulls-eye looking) rash. Long-term sequelae include neurologic, cardiovascular, and musculoskeletal complications.
*There are reported cases of sexual as well as in-utero transmission of Lyme disease.
The Centers for Disease Control (CDC) have stated on their website that the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to encompass the entire scope of Lyme disease. The number of cases of Lyme disease is significantly underreported at approximately 30,000 new cases per year. The CDC states “studies suggest that the number of people diagnosed with Lyme disease each year in the United States is around 300,000.” Also noted is that Lyme disease is the fastest growing vector-borne, infectious disease in the United States. Contrary to popular belief, Lyme disease is not just a medical condition found in those living on the East Coast but cases have been reported in every state in the US and numerous other countries in the world. I have been surprised when I have had patients with a clear case of Lyme disease (CDC positive blood testing, history, rash, symptoms, etc.) who have been told by another practitioner that ‘it can’t be Lyme. We don’t have Lyme here.’ That’s just not an accurate statement!
Here’s what you do need to know:
1. Lyme disease is a complex disease and can be difficult to diagnose.
• Only 50%-60% recall a tick bite.
• At most, 60% of infected people develop the typical ‘bulls-eye’ rash.
• Joint pain is found in somewhere between 20%-30%.
2. Lyme disease is often referred to as the ‘Great Imitator’ because symptoms mimic other health conditions.
• Fibromyalgia, Multiple Sclerosis, Anxiety, and Chronic Fatigue are among the most frequent diagnoses patients are given.
• Rheumatologic and neurologic diseases are other commonly diagnosed conditions in Lyme infected individuals.
3. Lyme disease can present with a myriad of symptoms as many react differently to the infection. Here are some of the more common presentations I see:
• Joint pain
• Pain (Radiculopathy)
• Anxiety/Depression/Mood Changes
• Chest pain
• Poor memory/Focus/Concentration (Cognitive issues)
• Sleep disturbances
• Facial paralysis (known as a Bell’s Palsy)
• Hormone abnormalities
** This list is not comprehensive of all possible presentations, just the more common ones we see in the office.
4. Testing for Lyme disease is unreliable.
• Elisa testing is the first step in a two-step screening process recommended by the CDC and is only 35% accurate in culture positive Lyme disease.
• Western Blot, the second step in the screening process, can miss 20-30% of culture positive Lyme disease.
• Culturing Borrelia is very difficult and is only performed in specialty labs and some university settings.
5. Lyme disease is a clinical diagnosis.
• The CDC notes that the diagnosis of Lyme disease is based on physical signs and symptoms as well as a history of possible exposure to affected ticks.
• Lab testing alone cannot make the diagnosis.
6. Chronic health concerns are common in Lyme disease patients.
• Forty percent of patients diagnosed with Lyme disease report chronic health issues.
7. Ticks can harbor many infectious agents that can be transmitted through the tick bite.
• Co-infections are increasingly being reported.
• Rocky Mountain Spotted Fever
• Colorado Tick Fever
• Powassan Fever
• Q Fever
8. Lack of adequate treatment can result in persistent Lyme disease (also known as Chronic Lyme disease).
• Short courses of antibiotics have resulted in upwards of 40% of recurrent/persistent disease.
Here’s what you need to do:
1. If you find a tick on your body, you should:
a. Not panic!
b. Remove the tick. Proper tick removal technique is necessary to prevent transmission of disease.
• Watch this video to learn proper tick-removal technique
2. Don’t wait:
a. If you find a tick embedded on you, seek medical care and treatment.
b. Up to 50% of ticks found in Lyme endemic areas carry the disease – it’s better to treat rather than be sorry and develop disease.
c. Don’t wait for symptoms to appear before treatment is initiated.
d. If you develop a rash, take pictures of it – Don’t wait to see your doctor as an Erythema Migrans rash can resolve as quickly as it presented.
3. Enjoy the outdoors but be wise and prepared!
a. Wear long-sleeves and pants that you tuck in to your shoes/socks when hiking, gardening, playing outdoors, etc.
b. Spray your clothing and belongings with repellent before engaging in outdoor activities.
• The Environmental Working Group (EWG) recommends the following repellent ingredients as their ‘top picks:’
– Picaridin [Learn more]
– IR3535 [Learn more]
– DEET [Learn more]
– Oil of Lemon Eucalyptus and its synthetic derivative PMD [Learn more]
c. Check your body, hair, clothing after coming in from the outdoors.
d. Don’t forget to check your animals too. Ticks can infect pets but can also ‘hop’ from their hair onto you.
4. Seek medical care if you believe you might be suffering with Lyme disease or have been bitten by a tick.
a. See your physician and explain your concerns.
b. Don’t be afraid to get a second opinion if you feel uneasy or are dissatisfied with your care.
c. Make sure you see a medical doctor who is familiar with Lyme disease and treatment options.
5. Be educated!
a. You are your best advocate!
b. Don’t accept when someone says ‘Lyme disease doesn’t exist here’ but also don’t assume that every rash or chronic pain/symptom is caused by Lyme disease.
c. Ask questions and seek answers!
Lyme disease is more prevalent than we think. If you suffer with chronic illness without a clear reason, seek a medical evaluation from a practitioner educated in diagnosing and treating Lyme disease and co-infections.
*Information in this article is not intended to diagnose, treat, or take the place of medical care or an evaluation. Please have a thorough workup with your provider or schedule an appointment to be seen at Vine Healthcare, LLC.