Lyme disease symptoms checklist test. Do you have Lyme disease?

{First Name:57} {Last Name:58}'s Lyme Disease Symptom Checklist
11/21/2024

According to the Centers for Disease Control and Prevention, over 300,000 cases of Lyme disease occur annually. Lyme disease, which is a bacterial infection spread by the bite of tick, accounts for almost 75% of all reported cases of all vector-borne disease in the United States. The expanded geographic distribution and growing prevalence of ticks as well as greater levels of travel, have increased patient exposure to ticks and Lyme disease. Ticks that carry Lyme disease are now present in half of all counties in the United States and cases have been reported in nearly every state. The number of cases have tripled over the past two decades.

Early diagnosis and treatment are essential to restore patients to health and to prevent progression of the disease to late or chronic Lyme disease, which is much harder to treat. Lyme disease is a clinical diagnosis—based on the patient’s medical history, symptoms and exposure to ticks. This symptom checklist was developed to assist patients and physicians in the diagnosis of Lyme disease.

The Symptoms Checklist is NOT a self-diagnosis tool. A proper diagnosis can only be made by a physician. Share your checklist responses with your physician to determine if you or your child have Lyme disease.

Exposure

1

Have you been exposed to a tick habitat?

Yes
No
Unsure

People who live, camp, hike, work, or play in wooded or grassy places have a greater risk of being bitten by an infected tick. Lyme disease is found all across the United States, with a particularly high incidence in the East, Midwest, and West Coast. Rates have increased significantly over time. The presence of the black legged tick, which is now in 50% of all US counties, determines exposure risk. Risk maps of ticks may not be accurate if tick studies have not been conducted in that county. CDC surveillance statistics reflect only one out of every ten cases. The best sources of risk exposure information are canine maps provided by IDEXX, which track Lyme disease and other tick-borne diseases, such as ehrlichia and anaplasma. IDEXX canine maps can be searched by zip code.

Tick bite

2

Do you recall being bitten by a tick?

Yes
No
Unsure

Only 25-30% of patients with Lyme disease remember a tick bite. Ticks are small and their bite is painless. Most human infection comes from nymphal ticks the size of the period at the end of this sentence.

Rash

3

Have you had a red expanding skin rash

Yes
No
Unsure

A distinctive rash shaped like a bull’s-eye is considered characteristic of Lyme disease. Yet, this type of rash only occurs in 9% of patients. Most rashes are solid with no center clearing and physicians may fail to diagnose these. CDC reports of rash vary by state and range from about 51% to 87%. A recent CDC report on Lyme carditis, which can be fatal, found that only 42% of cases had a rash. Most patients who do not have a rash are misdiagnosed. (Smith 2002, CDC 2008, CDC 2014, Aucott 2009)

Early Lyme Disease Symptoms

4

Have you had any of the following symptoms of early Lyme disease?

Red expanding skin rash

Yes
No
Unsure

Flu-like symptoms

Yes
No
Unsure

Facial nerve (Bell's) palsy (facial muscle weakness or paralysis)

Yes
No
Unsure

Fainting, shortness of breath, heart palpitations or chest pain (Lyme carditis)

Yes
No
Unsure

Severe headaches and neck stiffness

Yes
No
Unsure

Shooting pains that may interfere with sleep

Yes
No
Unsure

Lightheadedness

Yes
No
Unsure

Pain and swelling in large joints

Yes
No
Unsure

Only half of the patients with chronic Lyme disease recall having early symptoms. Symptoms are often dismissed by patients because they do not recall a tick bite or believe they have the flu. Flu symptoms outside of flu season should raise a red flag. Early Lyme patients most frequently report flu-like symptoms (60%), headaches (44%), dizziness (30%), muscle pains (54%), joint pains (48%), and heart related symptoms (10%). Bell’s palsy (4%) and swelling of the joints (0%) were uncommon. (Aucott 2013 and Smith 2002)

Late Lyme Disease Symptoms

5

Have you had any of the following symptoms typical of late or chronic Lyme disease?

Fatigue

Yes
No
Unsure

Headache

Yes
No
Unsure

Joint pain

Yes
No
Unsure

Muscle aches

Yes
No
Unsure

Twitching

Yes
No
Unsure

Memory loss

Yes
No
Unsure

Cognitive impairment

Yes
No
Unsure

Sleep impairment

Yes
No
Unsure

Heart-related symptoms

Yes
No
Unsure

Gastrointestinal symptoms (stomach/digestive)

Yes
No
Unsure

Neuropathy (nerve pain, numbness, hot/cold sensations, tingling)

Yes
No
Unsure

Psychiatric (e.g. depression, mood changes, etc.)

Yes
No
Unsure

New onset fatigue, widespread pain, sleep disturbance, and cognitive impairment are common symptoms of late Lyme disease. Many symptoms of late or chronic Lyme disease are non-specific and common among diseases. What sets Lyme patients apart is the severity of symptoms and the degree of functional impairment. Patients report pain at the severity of post-operative patients, fatigue at the level of patients with multiple sclerosis, and functional impairment comparable to those with congestive heart failure. Most patients with chronic Lyme disease report one or more of the following symptoms as severe or very severe: fatigue (48%), sleep impairment (41%), joint pain (39%), muscle aches (36%), other pain (34%), depression (34%), cognitive impairment (32%), neuropathy (32%), headaches (23%) and heart-related issues (10%). Chronic Lyme patients generally report more than one symptom and average three severe or very severe symptoms. (Aucott 2013; Cairnes 2005, Fallon 2008, Johnson 2011 and 2014.)

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Considerations

You should consider Lyme disease if you have any of the symptoms of early Lyme disease. The risk of having Lyme disease increases if you were exposed to Lyme disease, recall a tick bite or had early symptoms (particularly the rash). You should also consider Lyme disease if you have any unexplained symptoms of Late Lyme Disease, especially if you have two or more symptoms.

Delay in diagnosis is common. Approximately 60% of patients with chronic Lyme disease are not diagnosed for at least 2 years. Diagnostic testing for early Lyme disease (within a month of exposure) is widely considered unreliable and is not recommended by the CDC because patients have not developed the antibodies the test detects. In late Lyme disease, antibody levels may decline. Roughly 50% of negative Lyme tests are false negatives. (Johnson 2011, Stricker 2007)

In Lyme disease, there are two standards of care reflected in the medical guidelines of two specialty societies: the International Lyme and Associated Diseases Society (ILADS) and the Infectious Disease Society of America (IDSA). The differing guidelines reflect largely the poor state of laboratory testing for Lyme disease. The ILADS guidelines permit the exercise of clinical judgement by the treating physician, while the IDSA guidelines restrict treatment options. LymeDisease.org recommends that patients be informed about both standards of care and in consultation with their physician, determine the best treatment approach based on their individual circumstances. (Cameron 2014, Wormser 2006)

LymeDisease.org endorses the ILADS guidelines for Lyme disease, which are listed on the National Guidelines Clearinghouse and included a patient representative from the organization as a co-author.

For more information, please visit LymeDisease.org. If you have Lyme disease, please participate in MyLymeData.

References

Cairns V, Godwin J. Post-Lyme borreliosis syndrome: a meta-analysis of reported symptoms. International journal of epidemiology. 2005; 34(6).

Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Review Anti-Infective Therapy. 2014 Sep;12(9):1103-35.

Centers for Disease Control and Prevention. 2008. Lyme disease–United States, 1992–2006. MMWR, 57:1-12. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5317a4.htm

Centers for Disease Control and Prevention. MMWR 63(43);982-983. Notes from the Field: Update on Lyme Carditis, Groups at High Risk, and Frequency of Associated Sudden Cardiac Death — United States. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6343a4.htm

Asher, C. Lyme disease–carrying ticks are now in half of all U.S. counties. Science, Jan. 18, 2016. http://www.sciencemag.org/news/2016/01/lyme-disease-carrying-ticks-are-now-half-all-us-counties

Aucott JN, Rebman AW, Crowder LA, Kortte KB. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? Qual Life Res. 2013 Feb;22(1):75-84.

Aucott J, Morrison C, Munoz B, Rowe PC, Schwarzwalder A, West SK. Diagnostic challenges of early Lyme disease: lessons from a community case series. BMC Infect Dis. 2009;9:79.

Fallon BA, Keilp JG, Corbera KM, Petkova E, Britton CB, Dwyer E, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008 Mar 25:992-1003.

IDEXX, Dogs and Ticks, http://www.dogsandticks.com/diseases_and_symptoms/

Johnson L, Aylward A, Stricker RB. Healthcare access and burden of care for patients with Lyme disease: a large United States survey. Health Policy. 2011 Sep;102(1):64-71.

Johnson L, Wilcox S, Mankoff J, Stricker RB. Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ. 2014; 2.

Smith RP, Schoen RT, Rahn DW, Sikand VK, Nowakowski J, Parenti DL, et al. Clinical characteristics and treatment outcome of early Lyme disease in patients with microbiologically confirmed erythema migrans. Annals of internal medicine. 2002 Mar 19;136(6):421-8.

Stricker RB, Johnson L. Lyme wars: let's tackle the testing. BMJ. 2007 Nov 17;335(7628):1008.

Wormser GP, Dattwyler RJ, Shapiro ED, Halperin JJ, Steere AC, Klempner MS, et al. The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006 Nov 1;43(9):1089-134.

Do You Have Lyme Disease?

Lyme Disease Symptoms Checklist

Exposure

Tick bite

Rash

Early Lyme Disease Symptoms

Late Lyme Disease Symptoms

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