For Healthcare Providers

Tick-borne diseases are difficult to diagnose and often go undiagnosed or misdiagnosed. This is because there are many different types of tick-borne diseases, diagnostic testing is not reliable, and symptoms mimic many other common diseases. However, the longer a tick-borne disease goes undiagnosed, the higher the risk for complications and chronic impacts.  A misdiagnosis can also lead to unnecessary emergency room visits, ineffective treatments, and increased healthcare costs. 

To help promote early detection and help improve patient health outcomes, we analyzed survey and interview data from over 450 people with tick-borne diseases and came up with 15 patient-driven recommendations for healthcare providers.  

We recommend healthcare providers in Virginia and other tick endemic regions integrate these recommendations into their clinical practice.  We believe by doing so could help improve patient health outcomes. 

Patient-Driven Recommendations

"If only my physicians knew the signs of Lyme and co infections, I would not have suffered decades without a proper diagnosis" (TBD Experience Survey Participant, 2021).

There are over a dozen tick-borne diseases in Virginia.  Check out our Tick-borne Diseases in Virginia page or the Virginia Public Health Department's flyer on Ticks and Tick-borne Diseases in Virginia and educate yourself about the most common types of tick-borne diseases in Virginia.  

Not in Virginia? There are ticks and tick-borne diseases reported in all 50 states in the United States and most countries around the world. Review your country and region's most reputable public health sources and be informed.  When tick-borne diseases are not diagnosed early, they can lead to unnecessary pain and suffering for patients and families, as well as unnecessary doctor visits, medical tests, and healthcare costs.  

“Know everything about all TBDs and co-infections to help your patients” (TBD Patient Experience Survey Participant, 2021).

2. Learn more about tick-borne diseases and co-infections.

“Consider continuing education in this field of study. The field is lacking many knowledgeable providers” (TBD Experience Survey Participant, 2021).

""Become familiar with the newest ICD codes" (TBD Experience Survey Participant, 2021).

Healthcare providers  need to educate themselves on diagnosis and treatment of Lyme and other tick-borne diseases. The Global Lyme Alliance offers free continuing medical education and accredited continuing education on-demand webcasts on diagnosing and treating Lyme disease and other tick-borne disease. 

3. Ask your patients about possible tick exposure.

"I was never once asked if I was bitten by a tick"  

"During the first visit, ask your patients about outdoor work, hobbies, recreation, travel, and if they could have come in contact with a tick.    

"Ask the patient if they may have been bitten-especially during active tick season"

"Ask questions on ones background...and where they live and daily activities”  

"Ask about outdoor habits and hobbies" 

All quotes are from participants participating in the 2021 TBD Experience Survey.

4. Test early and test for co-infections.

"Ticks can carry multiple diseases so it is common that people will have multiple infections." (TBD Experience Survey Participant, 2021).

One in three participants from a patient experience survey reported having at least one tick-borne co-infection.  If a patient tests positive for one tick-borne disease,  consider additional testing or a clinical diagnosis for potential co-infections. In Virginia, Bartonella is a common co-infection in patients with Lyme disease.  

Tick-borne disease tests have an approximately 50% false negative rate.  In Virginia, under Title 32.1-137.06, health care providers are required to provide patients with a notice together with Lyme disease test results that states:  PATIENTS UNDERGOING A LYME DISEASE TEST SHOULD BE AWARE THAT LYME DISEASE TESTS VARY AND MAY PRODUCE RESULTS THAT ARE INACCURATE. THIS MEANS A PATIENT MAY NOT BE ABLE TO RELY ON A POSITIVE OR NEGATIVE RESULT. HEALTH CARE PROVIDERS ARE ENCOURAGED TO DISCUSS LYME DISEASE TEST RESULTS WITH THE PATIENT FOR WHOM THE TEST WAS ORDERED. 

5. Discuss all patient symptoms and make a clinical diagnosis.

"Remember not everyone will have the bulls-eye rash" (TBD Experience Survey Participant, 2021).

"Listen to every symptom even if it doesn't seem to fit the profile" (TBD Experience Survey Participant, 2021).

If patients test negative, but have symptoms, consider a clinical diagnosis. Tick-borne disease tests are not reliable. In Virginia, under Title 32.1-137.06, health care providers are required to provide patients with a notice together with Lyme disease test results that states:  PATIENTS UNDERGOING A LYME DISEASE TEST SHOULD BE AWARE THAT LYME DISEASE TESTS VARY AND MAY PRODUCE RESULTS THAT ARE INACCURATE. THIS MEANS A PATIENT MAY NOT BE ABLE TO RELY ON A POSITIVE OR NEGATIVE RESULT. HEALTH CARE PROVIDERS ARE ENCOURAGED TO DISCUSS LYME DISEASE TEST RESULTS WITH THE PATIENT FOR WHOM THE TEST WAS ORDERED. 

6. Believe your patients and believe that tick-borne diseases exist.

Never tell your patient it is all in their head. They are often experiencing a variety of symptoms  that are difficult to describe.  Many symptoms also mimic other common diseases and condit ions so they can be easily misdiagnosed. Remember to ask your patients about possible tick exposure and consider tick-borne diseases in your initial consultation and diagnosis. 

"Believe what patients tell you, no matter how unbelievable it sounds" (TBD Experience Survey Participant, 2021).

7. Treat each patient individually. Every TBD patient's experience is unique.

"Reactions take different paths with different people“ 

"No two people are alike and everyone reacts differently”

"Design therapy programs based on the individual"

All quotes are from participants in the 2021 Tick-borne Disease Experience Survey.

8. Really really listen.

“It took forever to find a doctor that would listen” 

"Listen to what the patient is asking and telling you"

"Let them know you are listening to them"

All quotes are from participants in the 2021 Tick-borne Disease Experience Survey.

9. Show compassion and empathy.

"Approach the relationship as a collaboration with kindness"  (TBD Experience Survey Participant, 2021).

"Always listen with empathy" (TBD Experience Survey Participant, 2021).

10. Think outside the box.

"Be willing to investigate and treat until all symptoms are resolved"

"Try new things when what you are doing doesn't work"

"Consider a combination of traditional treatments, alternative therapies and nutritional changes"

All quotes are from participants in the 2021 Tick-borne Disease Experience Survey.

11. Design individualized care plans in collaboration with your patients.

"Reactions take different paths with different people“ 

"No two people are alike and everyone reacts differently”

"Design therapy programs based on the individual"

"Help them by treating the whole body and helping with nutrition"

"Help patients navigate dietary changes"

All quotes are from participants in the 2021 Tick-borne Disease Experience Survey.

12. Treat the whole person (patient). 

Take a holistic approach to treating patients with tick-borne diseases.  

All quotes are from participants in the 2021 Tick-borne Disease Experience Survey.

13. Provide resources and referrals to specialists.

"Provide valuable resources"

"Refer patient to a specialist in the specific TBD"

14. Check in and follow up.

"This isn't over once you are diagnosed. Continue to follow up and remember in the future they had a tick-borne disease" (TBD Experience Survey Participant, 2021).

"Continue to check in on us throughout our treatment" (TBD Experience Survey Participant, 2021).

15. Stay current and review the latest research.

"Stay up to date on current research" (TBD Experience Survey Participant, 2021).

More quotes resources will be posted soon.