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How do you feel when you have Lyme disease?

Lyme disease is caused by a bacteria called Borrelia burgdorferi that is transmitted through the bite of infected ticks. The most common symptoms of Lyme disease include fever, headache, fatigue and a skin rash called erythema migrans. However, if left untreated, Lyme disease can spread to the joints, heart and nervous system, leading to more serious symptoms.

Early Localized Lyme Disease

In the early localized stage, which occurs 3 to 30 days after a tick bite, the most common symptom is the appearance of the erythema migrans rash. This rash occurs in 70-80% of infected people and starts as a small red area at the site of the tick bite. It then expands over the course of several days to weeks, forming a circular or oval-shaped rash that can grow up to 12 inches wide. Sometimes the rash may have a bull’s-eye appearance, with a red ring surrounding a central clearing. The rash is often warm to the touch but usually not itchy or painful.

In addition to the rash, other symptoms during this early stage may include:

  • Flu-like symptoms like fever, chills, headache, muscle aches, fatigue
  • Swollen lymph nodes
  • Stiff neck
  • Joint pain or swelling

These flu-like symptoms typically last around 3 to 6 weeks, sometimes coming and going. Fatigue and headache are especially common during this phase. Even without treatment, these symptoms usually go away on their own. However, this does not mean the infection has cleared. The bacteria may still be present and spreading in the body.

Early Disseminated Lyme Disease

Early disseminated Lyme disease develops in some people 2 to 12 weeks after infection. During this stage, the bacteria is beginning to spread throughout the body. Symptoms may include:

  • Fatigue, fever and chills
  • Headaches and neck stiffness
  • Additional EM rashes on other areas of the body
  • Facial palsy (loss of muscle tone or drooping on one or both sides of the face)
  • Intermittent pain in tendons, muscles, joints, and bones
  • Heart palpitations or an irregular heart beat (Lyme carditis)
  • Episodes of dizziness or shortness of breath
  • Nerve pain

Neurological symptoms may also start to develop at this stage, including:

  • Meningitis (inflammation of the membranes surrounding the brain and spinal cord) causing severe headaches and neck stiffness.
  • Radiating nerve pain
  • Numbness or tingling in the hands or feet
  • Problems with short-term memory

Late Disseminated Lyme Disease

Late disseminated Lyme disease refers to the stage where symptoms reflect advanced infection that has spread throughout the body. This occurs months to years after the initial tick bite, in patients that were not treated during earlier phases. Some of the common symptoms include:

  • Severe joint pain and swelling, particularly in the knees. Can lead to chronic arthritis if left untreated.
  • Neurological symptoms like numbness, tingling, cognitive deficits, balance issues, difficulty walking
  • Intermittent muscle pain and weakness
  • Heart palpitations, lightheadedness due to effects on the heart
  • Inflammation of the membranes around the brain (meningitis) or in the brain itself (encephalitis)

Additional late-stage neurological manifestations may include:

  • Facial palsy (drooping of face)
  • Problems with concentration, memory and multitasking
  • Mood swings, irritability, depression
  • Sleep disturbances
  • Overwhelming fatigue

Post-Treatment Lyme Disease Syndrome

A small percentage of people continue to have symptoms like fatigue, muscle aches and neurological pain even after antibiotic treatment. This condition is called post-treatment Lyme disease syndrome (PTLDS). It’s not known what causes persistent symptoms, but possible explanations include:

  • The bacteria was not completely cleared with antibiotics
  • Immune system dysfunction continues after bacteria are eliminated
  • Nervous system damage that is slow to resolve

Symptoms of PTLDS may wax and wane but generally improve gradually over months to years. Taking it easy and managing stress levels can help. Additional antibiotic treatment is generally not recommended.

Psychological Effects of Lyme Disease

In addition to physical symptoms, Lyme disease can take a significant psychological toll. Some common emotional effects include:

  • Anxiety and worry – It’s natural to feel anxious about health problems. You may worry about if you’ll fully recover or have anxiety around medical costs and appointments.
  • Anger and frustration – The unpredictable symptoms and fluctuation of Lyme can lead to frustration. You may feel angry about limitations imposed by the illness.
  • Depression – Fatigue and pain from Lyme can contribute to depression. Additionally, inflammation may have direct effects on the brain.
  • Difficulty concentrating and multitasking – Neurological effects of Lyme such as “brain fog” can make it hard to focus and juggle multiple tasks.
  • Social isolation – Fatigue and pain may prevent you from being as active and sociable as you’d like.

Coping strategies like connecting with support groups, journaling, relaxation techniques and talk therapy can help manage the emotional side effects.

When to See a Doctor

If you develop possible early symptoms of Lyme disease like fever, chills, headache, fatigue and muscle aches in the summer months, especially if you know you were exposed to ticks, it’s important to see a doctor right away. Blood tests and observation of any rash can help with prompt diagnosis and treatment.

Seek emergency care immediately if you experience signs of Lyme carditis such as chest pain, shortness of breath, lightheadedness, fainting or an irregular heartbeat.

See your doctor if you develop other disseminated symptoms like severe headaches with neck stiffness, cognitive issues, muscle weakness, multiple rashes or severe fatigue later on. Be sure to mention any tick exposure you may have had, even if it was months ago.

Contact your doctor if you developed Lyme disease in the past and still have lingering symptoms like joint pain, fatigue and muscle aches that are interfering with your quality of life. Additional testing and chronic disease management may help provide relief.

Tests for Lyme Disease

If Lyme disease is suspected, your doctor can order blood tests that look for antibodies your immune system makes against the bacteria. The CDC recommends a two-step process when testing for Lyme disease.

First, a screening test called an enzyme-linked immunosorbent assay (ELISA) is done. If it’s positive or unclear, it is followed by a more specific antibody detection test called an immunoblot test or western blot. In the early stages, blood tests may not be positive because your body hasn’t produced enough antibodies yet. In this case, your doctor may make a diagnosis based on symptoms.

Other potential tests include:

  • Polymerase chain reaction (PCR) – Looks for DNA of the bacteria
  • Culture test – Tries to grow bacteria from blood, joint fluid or CSF
  • MRI – Can check for inflammation of joints and spinal cord
  • Lumbar puncture – To test spinal fluid if neurological symptoms are present

Lyme Disease Treatment

The standard treatment for Lyme disease is antibiotic therapy with drugs like doxycycline, amoxicillin or cefuroxime. The length of treatment depends on how long you’ve been infected and how severely. For early localized disease, antibiotics are typically taken for 2 to 3 weeks. For later disseminated stages, you may need to take them for 4 weeks or longer.

Most people improve significantly with antibiotics, especially if treated early. However, a small number may have lingering symptoms like joint pain and fatigue even after treatment. This post-treatment Lyme disease syndrome is thought to arise from residual damage from the infection. There is limited evidence that prolonged antibiotic treatment helps PTLDS so it is not generally recommended. Instead, anti-inflammatories, physical therapy, antidepressants, exercise, and stress reduction may provide gradual relief in these cases.

Home Remedies to Help You Feel Better

In addition to antibiotics and medications prescribed by your doctor, there are some home remedies and lifestyle habits that can help relieve symptoms and make you feel better if you have Lyme disease:

  • Get plenty of rest – The fatigue from Lyme can be overwhelming, making adequate rest critical.
  • Try gentle exercises like yoga or walking – This helps prevent muscle and joint stiffness without overexertion.
  • Use heating pads or warm baths – The warmth can soothe muscle and joint pain.
  • Massage sore or tender areas – Massage helps increase circulation and reduce muscle tension.
  • Drink plenty of fluids – Staying hydrated relieves headaches and dizziness associated with Lyme.
  • Eat a healthy diet – Fruits, vegetables, whole grains and lean protein boosts your immune system.
  • Reduce stress – Try meditation, relaxation techniques and staying positive. Stress takes a toll on your body.

Always check with your doctor before trying any new therapies or supplements, as they may interact with medications.

Coping Strategies for Lyme Disease

Living with the variable, persistent symptoms of Lyme disease can be emotionally and physically challenging. Here are some tips for coping:

  • Learn about Lyme so you know what to expect and how to best manage your health.
  • Find support groups online or in person to connect with others experiencing the same thing.
  • Communicate openly with friends and family about your limitations.
  • Pace yourself – balance activity with rest periods to avoid overexertion.
  • Allow yourself to mourn losses or life interruptions from Lyme.
  • Focus energy on what you can control – like eating well and staying positive.
  • Set small goals you can achieve on your good days.
  • Try to find humor and laughter when possible.
  • Explore complementary therapies like massage, acupuncture and meditation for symptom relief.
  • Stay connected socially, even if you need to adapt activities.
  • Consider talking to a counselor if you’re struggling with depression or anxiety.

With patience and by being gentle with yourself, you can effectively cope with life’s challenges during your healing process.

Preventing Lyme Disease

You can lower your risk of getting Lyme disease with some simple preventive measures:

  • Avoid areas with high grass or brush when hiking or camping.
  • Wear light-colored clothes to spot ticks easier.
  • Use insect repellent containing DEET on skin and clothes when outdoors.
  • Treat clothing, tents and gear with permethrin to repel ticks.
  • Check your body for ticks daily and remove any promptly.
  • Shower as soon as possible after being outdoors to wash off unattached ticks.
  • Tuck pant legs into socks and shirts into pants to keep ticks on outside of clothing.
  • Ask your vet about tick prevention products for your pets.
  • Mow lawns frequently, trim shrubs and clear out brush where ticks live.

If you do find a tick attached to your skin, use fine-tipped tweezers and pull upward with steady, even pressure. Never crush or twist the tick’s body. Once removed, clean and disinfect the bite area thoroughly. Contact your doctor if any rash appears or if you develop any flu-like symptoms in the following weeks.

Long-Term Outlook for Lyme Disease

With early detection and proper antibiotic treatment, most people who get Lyme disease recover completely within a few weeks to months, with no lasting effects. The exception is patients with post-treatment Lyme disease syndrome who continue to have debilitating fatigue, joint pain and cognitive issues.

In rare cases, Lyme can lead to severely debilitating long-term effects involving the brain, nerves, muscles, joints and heart if allowed to progress to late disseminated disease. However, appropriate treatment in the early stages almost always prevents complications.

In general, early treatment leads to an excellent long-term prognosis. Some tips for preventing recurring episodes or managing lingering symptoms include:

  • Stay vigilant about Lyme symptoms to get early treatment if you are reinfected. Let doctors know about your prior Lyme history.
  • Continue to protect yourself against ticks to avoid another infection.
  • Eat healthy, exercise moderately within your limits, and reduce stress to boost your immune system.
  • Get regular checkups to monitor for emerging complications.
  • Consider enrolling in a clinical trial if you have PTLDS – research is ongoing for improved treatments.

By knowing how to prevent Lyme disease, recognizing symptoms quickly and following your doctor’s treatment plan, you can go on to live a happy and active life after recovering.

Conclusion

Lyme disease can produce an assortment of debilitating symptoms ranging from rashes, fever and muscle aches in the early stages to severe joint swelling, heart issues and neurological problems in later stages. This complex, difficult-to-diagnose infection can also take a significant psychological toll. However, the prospects for recovery are good if Lyme disease is diagnosed and treated early with antibiotics. Being aware of the symptoms, getting prompt medical care after tick bites, and knowing how to protect yourself can help ensure Lyme disease does not seriously impact your long-term health and quality of life.