​Signs and Symptoms of Lyme Disease​

If you had a tick bite, live in an area known for Lyme disease or have recently traveled to an area where it occurs, and observe any of these symptoms, you should seek medical attention!

Early localized stage (3-30 days post-tick bite)
•Red, expanding rash called erythema migrans (EM)
•Fatigue, chills, fever, headache, muscle and joint aches, and swollen lymph nodes

Some people may get these general symptoms in addition to an EM rash, but in others, these general symptoms may be the only evidence of infection.

Some people get a small bump or redness at the site of a tick bite that goes away in 1-2 days, like a mosquito bite. This is not a sign that you have Lyme disease. However, ticks can spread other organisms that may cause a different type of rash. For example, Southern Tick-associated Rash Illness (STARI) causes a rash with a very similar appearance.​
 

Erythema migrans (EM) or "bull's-eye" rash

Rash occurs in approximately 70-80% of infected persons1 and begins at the site of a tick bite after a delay of 3-30 days (average is about 7 days).
Rash gradually expands over a period of several days, and can reach up to 12 inches (30 cm) across. Parts of the rash may clear as it enlarges, resulting in a “bull's-eye” appearance.
Rash usually feels warm to the touch but is rarely itchy or painful.
EM lesions may appear on any area of the body.

 

 

Early disseminated stage (days to weeks post-tick bite)

Untreated, the infection may spread from the site of the bite to other parts of the body, producing an array of specific symptoms that may come and go, including:
•Additional EM lesions in other areas of the body
•Facial or Bell's palsy (loss of muscle tone on one or both sides of the face)
•Severe headaches and neck stiffness due to meningitis (inflammation of the spinal cord)
•Pain and swelling in the large joints (such as knees)
•Shooting pains that may interfere with sleep
•Heart palpitations and dizziness due to changes in heartbeat

Many of these symptoms will resolve over a period of weeks to months, even without treatment2.However, lack of treatment can result in additional complications, described below.

Bell's (facial) palsy
 

Loss of muscle tone on one or both sides

of the face is called facial or “Bell's” palsy.

Late disseminated stage (months-to-years post-tick bite)

Approximately 60% of patients with untreated infection may begin to have intermittent bouts of arthritis, with severe joint pain and swelling. Large joints are most often affected, particularly the knees3. Arthritis caused by Lyme disease manifests differently than other causes of arthritis and must be distinguished from arthralgias (pain, but not swelling, in joints).

Up to 5% of untreated patients may develop chronic neurological complaints months to years after infection4. These include shooting pains, numbness or tingling in the hands or feet, and problems with short-term memory.
 

Arthritis​

Pain and swelling in the large joints (such as knees) can occur.
 

Lingering symptoms after treatment (post-treatment Lyme disease syndrome)

Approximately 10-20% of patients with Lyme disease have symptoms that last months to years after treatment with antibiotics5. These symptoms can include muscle and joint pains, cognitive defects, sleep disturbance, or fatigue. The cause of these symptoms is not known, but there is no evidence that these symptoms are due to ongoing infection with B. burgdorferi. This condition is referred to as Post-treatment Lyme disease syndrome (PTLDS). There is some evidence that PTLDS is caused by an autoimmune response, in which a person's immune system continues to respond, doing damage to the body’s tissues, even after the infection has been cleared. Studies have shown that continuing antibiotic therapy is not helpful and can be harmful for persons with PTLDS.

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References
1.Correspondence. The Presenting Manifestations of Lyme Disease and the Outcomes of Treatment. N Engl J Med 2003; 348:2472-2474, June 12, 2003.
2.Allen C. Steere, Jenifer Coburn, Lisa Glickstein. The emergence of Lyme disease. J. Clin. Invest. 2004; 113(8):1093.
3.Steere, AC, Schoen, RT, Taylor, E. The clinical evolution of Lyme arthritis. Ann. Intern. Med. 1987. 107:725-731.
4.Auwaerter PG, Aucott J, Dumler JS. Lyme borreliosis (Lyme disease): molecular and cellular pathobiology and prospects for prevention, diagnosis and treatment. Expert Rev Mol Med. 2004 Jan 19;6(2):1-22.
5.Marques, A. Chronic Lyme disease: a review. Infect Dis Clin North Am 2008; 22:341-60.

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​Post-Treatment Lyme Disease Syndrome​

Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS).

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research, and clinical studies to determine the cause of PTLDS in humans are ongoing.

Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications. The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well.

If you have been treated for Lyme disease and still feel unwell, see your doctor to discuss how to relieve your suffering. Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available.

It is normal to feel overwhelmed by your ongoing symptoms. Some things that may help you manage your PTLDS include:
•Check with your doctor to make sure that Lyme disease is not the only thing affecting your health.
•Become well-informed. There is a lot of inaccurate information available, especially on the internet. Learn how to sort through this maze.
•Track your symptoms. It can be helpful to keep a diary of your symptoms, sleep patterns, diet, and exercise to see how these influence your well-being.
•Maintain a healthy diet and get plenty of rest.
•Share your feelings. If your family and friends can't provide the support you need, talk with a counselor who can help you find ways of managing your life during this difficult time. As with any illness, Lyme disease can affect you and your loved ones. It doesn't mean that your symptoms are not real. It means that you are a human being who needs extra support in a time of need.

Resources
•"I don’t know what to believe"--This guide explains how scientists present and judge research and how you can ask questions about the scientific information presented to you. From the non-profit group, Sense about Science
•"I’ve got nothing to lose"--A guide to understanding claims about cures and treatments from the non-profit group, Sense about Science
•Pain management tools--From the American Chronic Pain Association log.
•Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research--Committee on Advancing Pain Research, Care, and Education; Institute of Medicine.
•Lyme disease clinical trials--A service of the U.S. National Institutes of Health.

References

Reviews of human research

Marques, A. Chronic Lyme disease: a review. Infect Dis Clin North Am 2008; 22:341–60.

Feder, et al. A critical appraisal of "chronic Lyme disease". New Eng. J. Med. 2008; 357:1422–30.

Non-human research

The following publications refer to studies in mice and monkeys. Please note that while animal studies are helpful, further research is necessary to determine whether these results correlate with human disease.

Barbour A. Remains of infection. J Clin Invest. 2012 Jul 2;122(7):2344–6. doi: 10.1172/JCI63975. Epub 2012 Jun 25.

Bockenstedt LK, Gonzalez DG, Haberman AM, Belperron AA. Spirochete antigens persist near cartilage after murine Lyme borreliosis therapy. J Clin Invest. 2012 Jul 2;122(7):2652–60. doi: 10.1172/JCI58813. Epub 2012 Jun 25.

Embers ME, Barthold SW, Borda JT, Bowers L, Doyle L, et al. (2012) Persistence of Borrelia burgdorferi​