A Full Guide: What to Expect with Lyme Disease

January 22, 2020

A book is showing Lyme disease
JayDee Huppert

Lyme disease is a common disease that most people know little about. Getting diagnosed, or knowing someone close with this illness, can be a scary time if you don't have a clear understanding of it. With the right knowledge, you can feel confident and know what to expect moving forward with prevention, diagnosis, treatment and recovery.

What is Lyme disease?

Lyme disease is spread to humans via ticks that have fed on animals (deer, mice, or birds) infected with the bacteria Borrelia burgdorferi.   It is the most common illness caused by ticks throughout Europe and the United States.  There is a lot of ambiguity around it because of the wide range of symptoms people experience.

Did you know?

  • A tick must be on the skin for at least 36 hours to transmit the infection.
  • Most people with Lyme disease don't even realize they were bit by a tick.
  • People that live in wooded, humid areas are significantly more likely to get this illness.
  • People with pets or a farm are also more likely to come in contact with ticks and contract it.

Symptoms of Lyme disease

There are a lot of variables that affect the specific symptoms and their severity. Symptoms occur in three different stages depending on how far the bacterial infection has spread (known as early localized, early dessiminated, and late dessiminated). Here's an idea of what to expect (note: children experience similar symptoms too).

  • A rash that is flat and circular, looking like a bullseye (usually one of the first symptoms).
  • Muscle and joint aches.
  • Swollen joints and lymph nodes.
  • Trouble sleeping and concentrating.
  • Headache, fever, and generalized full body fatigue.
  • Neurological symptoms such as numbness, tingling, and even meningitis with later stages.
  • Severe joint arthritis with the third stage.
  • Brain swelling, which can cause memory loss and general mental fogginess.

Diagnosing Lyme Disease

The sooner Lyme disease is diagnosed, the lower the risk for developing more advanced late stage symptoms. Your doctor will do a full physical exam and assess your symptoms as they relate to Lyme disease. A blood test can be ordered after the first few weeks of symptoms (waiting will increase the accuracy of the test). There are several different tests that all screen for antibodies specific to Lyme disease. For later stages, joint or spinal cord fluid may be extracted and tested for bacteria too.

Treating Lyme Disease

The sooner treatment is started the better. When caught early, a 10 to 14 day course of antibiotics (usually oral) can usually quickly eliminate the bacterial infection. Medication options include doxycycline, amoxicillin, and cefuroxime. Which option is best depends on age, severity, past experiences with antibiotics, and for women, if they are pregnant or nursing. Intravaenous (IV) options for antibiotics may be used for more severe infections affecting the heart or brain.

Long term issues with Lyme disease

Unfortunately, up to 20% of people treated with antibiotics will experience late onset symptoms. Known as Lyme disease syndrome, it can lead to off and on symptoms that ultimately affect cognition, speech, and mobility. Treatment focuses on maximizing comfort and quality of life. These may include:

  • An exercise program for staying active and addressing specific issues with joint motion, flexibility, and strength. This might include initial formal physical therapy to develop a personalized program.
  • Medication to treat and manage pain and swelling.
  • Occupational therapy to learn how to adapt your environment for maximizing daily activities.
  • Speech therapy to address issues with memory, articulation , and more.
  • Treatment is ultimately about finding a balance between staying active and resting when symptoms flare up.

The good news

There is no evidence that Lyme disease can be spread from human to human (or even human to fetus for pregnant women).  There are also many ways to minimize your risk of contracting the diesase. These include:

  • Wearing long sleeved clothing when outside, ironically especially in warmer climates (look for quick dry lightweight options for comfort).
  • Keeping your yard clear and clean of brush and wood where ticks can live.
  • Use bug repellent when necessary. Generally, 10% DEET is recommended but be cautious with it around children (consider high quality herbal options like oil of lemon eucalyptus).
  • Check your skin diligently after being outside, especially the scalp.  If possible, have someone double check for you too.
  • If you find a tick,  remove the entire thing with tweezers (squeeze firmly at the head or mouth).  Then, stay alert for symptoms and seek treatment immediately if necessary.

Knowledge is power.

You now know all the basics of Lyme disease symptoms, treatment, and prevention.  Of course, prevention is always the best option. However, if you know what symptoms to look out for you can quickly get treated and prevent any chronic issues. If you do experience long term problems, there are a lot of options for maximizing your health and quality of life. With the right awareness, Lyme disease doesn't have to cause anxiety!

**Talk to your doctor  immediately if you experience any of the symptoms listed above as soon as possible.

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