Ways To Imagine What It’s Like To Have Lyme Disease
Dealing with Lyme disease can be challenging enough based on the complex symptoms alone.
What makes it 10 times more challenging, though, is the fact that our symptoms are invisible.
We try to describe what were going through, but the words get lost in translation as the hearer sees us as normal, healthy individuals.
How can we be understood? To our friends, the medical community, our own families?
If I were to describe to a healthy person what a day in my shoes feels like, this is along the lines of what I might say.
If you are healthy, and truly want to understand what Lyme Disease is like, I ask you to read the following when you have enough time to let the words register. Really try to enter this world for a moment.
1. Lyme disease that is, chronic Lyme, also known as late-stage Lyme or post-treatment Lyme disease feels like youre running a marathon, uphill, just to get through the day.
2. You feel like youre at least 50 years older than you are. Youre slow to get around, you have arthritis from head to toe and you struggle with memory loss. You use one of those jumbo size pill boxes and have at least two kitchen cupboards dedicated to medication and supplements.
3. You feel like youre on a seaside ship while walking throughout your motionless house.
4. You have to work twice as hard to concentrate on anything, whether reading words from a book or listening to a friend tell you a story.
5. Your head pounds and aches as though it were stuck in a vice.
Treatment For Other Forms Of Lyme Disease
People with other forms of disseminated Lyme disease may require longer courses of antibiotics or intravenous treatment with antibiotics such as ceftriaxone. For more information about treating other forms of Lyme disease, see:
The National Institutes of Health has funded several studies on the treatment of Lyme disease that show most people recover within a few weeks of completing a course of oral antibiotics when treated soon after symptom onset. In a small percentage of cases, symptoms such as fatigue and myalgia can last for more than 6 months. This condition is known as post-treatment Lyme disease syndrome , although it is also sometimes called chronic Lyme disease. For details on research into chronic Lyme disease and long-term treatment trials sponsored by NIH, visit the visit the National Institutes of Health Lyme Disease web siteexternal icon.
When To Call A Doctor
- A tick is attached to your body and you can’t remove the entire tick.
- You have a circular red rash that expands over the course of several days, especially if you know you were recently exposed to ticks. You may also have flu-like symptoms, such as fatigue, headache, stiff neck, fever, chills, or body aches.
- You feel very tired or have joint pain , irregular heartbeats, severe headache, or neck pain.
- You are pregnant or breastfeeding and you think you may have been exposed to ticks.
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Symptoms Of Early Stage Lyme Disease
According to the Centers for Disease Control and Prevention , early-stage Lyme disease symptoms crop up within 3 to 30 days after exposure and can include but are not limited to:
- Joint pain and swelling
- Swelling of the lymph nodes
- Erythema migrans , a bulls-eye-shaped rash that appears at the site of the tick bite
Early Lyme disease does not always appear the same in all patients. For example, up to 30% of patients dont remember experiencing a bulls eye rash.
Achy Stiff Or Swollen Joints
Joint pain and stiffness, often intermittent, are early Lyme symptoms. Your joints may be inflamed, warm to the touch, painful, and swollen. You may have stiffness and limited range of motion in some joints .
Pain may move around. Sometimes your knees may hurt, whereas other times its your neck or your heels. You may also have bursitis . Bursae are the thin cushions between bone and surrounding tissue.
The pain may be severe, and it may be transitory. More than one joint may be affected. Most often the large joints are involved .
People often attribute joint problems to age, genetics, or sports. Lyme should be added to that list, as these statistics indicate:
- One study estimates that 80 percent of people with untreated Lyme have muscle and joint symptoms .
- Fifty percent of people with untreated Lyme have intermittent episodes of arthritis .
- Two-thirds of people have their first episode of joint pain within six months of the infection .
- Use of anti-inflammatory drugs may mask the actual number of people with joint swelling .
Joint pain that comes and goes, or moves from joint to joint, could be a sign of Lyme.
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Signs And Symptoms Of Lyme Disease
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Lyme disease is an underreported, under-researched, and often debilitating disease transmitted by spirochete bacteria. The spiral-shaped bacteria, Borrelia burgdorferi, are transmitted by blacklegged deer ticks. Lymes wide range of symptoms mimic those of many other ailments, making it difficult to diagnose .
The blacklegged ticks can also transmit other disease-causing bacteria, viruses, and parasites. These are known as coinfections . These ticks that transmit Lyme are increasing their geographical spread. As of 2016, they were found in about half the counties in 43 of 50 states in the United States .
Lyme is the fifth most reported of notifiable diseases in the United States, with an estimated 329,000 new cases found annually . Some studies estimate that there are as many as 1 million cases of Lyme in the United States every year .
Most people with Lyme who are treated right away with three weeks of antibiotics have a good prognosis.
But if youre not treated for weeks, months, or even years after infection, Lyme becomes more difficult to treat. Within days of the bite, the bacteria can move to your central nervous system, muscles and joints, eyes, and heart .
Here is a list of 13 common signs and symptoms of Lyme disease.
What Are The Symptoms
One sign of Lyme disease is a round, red rash that spreads at the site of a tick bite. This rash can get very large.
Flu-like symptoms are also common. People in the early stages of Lyme disease may feel very tired and have headaches, sore muscles and joints, and a fever.
These symptoms can start at any time, from 3 days to up to a month after you have been bitten. Some people don’t have any symptoms when they are in the early stages of Lyme disease. And they may not even remember getting a tick bite.
If Lyme disease goes untreated, you can have more serious symptoms over time. These include:
- Swelling and joint pain .
- Tingling and numbness in your hands, feet, and back.
- A lack of energy that does not get better.
- Trouble focusing your thoughts.
- Weakness or paralysis in your face muscles.
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Regression And Other Symptoms In Children
Children are the largest population of Lyme patients.
The CDC study of reported Lyme cases from 19922006 found that the incidence of new cases was highest among 5- to 14-year-olds . About one quarter of reported Lyme cases in the United States involve children under 14 years old .
Children can have all the signs and symptoms of Lyme that adults have, but they may have trouble telling you exactly what they feel or where it hurts.
You may notice a decline in school performance, or your childs mood swings may become problematic.
Your childs social and speech skills or motor coordination may regress. Or your child may lose their appetite.
Children are more likely than adults to have arthritis as an initial symptom 01267-2/fulltext#sec0040″ rel=”nofollow”> 25).
In a 2012 Nova Scotian study of children with Lyme, 65 percent developed Lyme arthritis . The knee was the most commonly affected joint.
Things People Don’t Realize You’re Doing Because You Have Lyme Disease
When you have a chronic illness, you often develop habits to make it through each day. However, if this disease is invisible, like Lyme disease, it can make it difficult for others to understand why you do the things you do.
Lyme disease is a vector-borne bacterial infection that can affect nearly every aspect of the body. Since Lyme can cause so many different symptoms, those living with it have to learn how to cope and make it through their days. For me, I often have to wear sunglasses indoors because the light sensitivity is too much people often think I am hungover, but in reality, I am just trying to get through the work day without my eyes burning. It is hard when others dont understand what you are going through or why you are acting a certain way.
That is why we asked our Mighty community for some things people dont realize they are doing because they have Lyme. People dont always know what is going on in someone elses body. So maybe the next time you have to wear your pajamas to the grocery store, or your sunglasses inside, others will be more accepting and understanding of what you are going through.
Here is what our community shared with us:
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Outlook For Early Disseminated Lyme Disease
If you receive a diagnosis and treatment with antibiotics at this stage, you can expect to be cured of Lyme disease. Without treatment, complications can occur. Treatments are available for the complications.
In rare cases, you may experience a continuation of Lyme disease symptoms after antibiotic treatment. This is called post-treatment Lyme disease syndrome .
Some people who were treated for Lyme disease report muscle and joint pain, cognitive difficulties, sleep issues, or fatigue after their treatments were finished.
The cause of this is unknown. However, researchers believe it may be due to an autoimmune response in which your immune system attacks healthy tissues. It may also be linked to an ongoing infection with the bacteria that causes Lyme disease.
The practices below can reduce your likelihood of contracting Lyme disease and having it progress to the early disseminated stage.
How Does Lyme Disease Work
The bacterium Borrelia burgdorferi causes Lyme disease when it get into your bloodstream. You may experience a variety of symptoms, depending on the stage of infection.
Early on, typical symptoms of Lyme disease include fever,chills, headache, joint aches and most distinctively a spreading rash thatresembles a bulls-eye.
But if itisnt identified and treated within 36 to 48 hours, the infection can spread toother parts of your body, including the heart and nervous system.
The later,more serious stages of Lyme disease can lead to neurological damage andarthritis.
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The Blood Tests Can Have False Positives
The blood tests can trigger false positives, suggesting that you have the disease when you really dont. This can happen in up to one out of four tests.
This can lead to unnecessary treatment with antibiotics. These drugs are usually safe, but they sometimes cause side effects, such as nausea, vomiting, diarrhea, and increased sensitivity of the skin to sunlight. In rare cases, they can even cause dangerous allergic reactions.
Using too many antibiotics can also lead to the growth of drug-resistant bacteria. This means that bacteria in your body may get stronger and more difficult to treat with antibiotics in the future.
A false positive can also lead to more unneeded blood tests, urine tests, X-rays, and doctor visits.
If you have a false positive, you may not get treated for the real cause of your pain. For example, rheumatoid arthritis is a disease that causes joint pain. It can lead to permanent and severe joint damage if you do not start taking the right medicines as early as possible.
What Increases Your Risk
The main risk factor for Lyme disease is exposure to ticks that are infected with Lyme disease bacteria. In areas where Lyme disease is widespread, such as the eastern and south-central areas of Canada, southern British Columbia, and northeastern United States, several factors may increase your risk, including:
- Spending time outdoors during the warm months of the year when ticks are most active. This is usually between May and November, with peak activity in June and July.
- Having indoor/outdoor pets. They can bring infected ticks into the house. Although dogs and cats can become infected with the Lyme disease bacteria, they cannot pass the illness to humans. But the infected ticks can drop off the animal and then bite and infect a person.
- Having a stone fence or a bird feeder near your house. Stone fences often become homes for mice, and mice may feed on spilled seed from a bird feeder. Where there are mice, there are ticks.
Remove ticks right away, as soon as you notice them. Your risk for getting Lyme disease increases the longer a tick is attached to your body. Ticks generally cannot transmit Lyme disease until they are attached for at least 36 hours.
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What If A Tick Bites My Dog
The more ticks in your region, the likelier it is that your furry pal will bring them home.
Your dog is much more likely to be bitten by a tick than you are. And where Lyme disease is common, up to 25% of dogs have had it at some point.
About 10% of dogs with Lyme disease will get sick. 7-21 days after a tick bite, your dog might seem like theyâre walking on eggshells. They also might have a fever and enlarged lymph nodes. Plus, they might seem tired. Dogs also get antibiotics for Lyme.
What if my dog brings ticks into my home?
Use a tick control product on your pet to prevent Lyme disease. Also, have your dog vaccinated against Lyme.
Check your dogâs whole body each day for bumps. If you notice a swollen area, see if thereâs a tick there. If you find a tick, wear gloves while you use tweezers to separate it from your dog. Then, put it in soapy water or alcohol, or flush it down the toilet.
Use alcohol to clean the spot on your dog where the tick was attached. Keep an eye on that spot, and also on your dog to make sure theyâre behaving normally. If you notice any changes, check with your vet.
John Aucott, MD, assistant professor of medicine, Johns Hopkins University School of Medicine director, Johns Hopkins Lyme Disease Clinical Research Center.
Morbidity and Mortality Weekly Report: âVital Signs: Trends in Reported Vectorborne Disease Cases — United States and Territories, 2004-2016.â
American College of Rheumatology.
You Do Not Usually Need Tests To Show That You Have Lyme Disease
In most cases, theres a clear sign of Lyme diseasea painless, spreading rash that often grows to look like a bulls eye. If you have this rash, and you recently had a tick bite or were in an area known for Lyme disease, you dont need a test. Instead, your doctor can just start treating you with antibiotics, as appropriate.
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Lyme Disease Comes With A Huge Range Of Symptoms From Dizziness To Nausea And Facial Numbness
I was sent home from the hospital with a two-week course of antibiotics and instructions to rest up for a couple of days, and that was it. There was no mention of how the illness was going to impact me long-term.
But Lyme disease has a huge range of other symptoms, according to Centers for Disease Control and Prevention , which include fever, chills, severe headaches, neck stiffness, night sweats, pain in muscles, joints, and bones, dizziness, nausea, and facial palsy, as well as the EM rash. With the symptoms being so broad, and blood tests known to be pretty unreliable, as reported by The Times, it can be difficult to diagnose.
The CDC says the EM rash only appears in around 70% to 80% of cases, so I was lucky that I’d spotted it and was diagnosed relatively quickly. But it’s not uncommon for people to go months or even years before getting to the root cause of their symptoms, by which time much more lasting damage can be done.
The Guardian reported in August 2017 that former England rugby captain Matt Dawson had to undergo heart surgery after being diagnosed with Lyme disease. He had also been bitten by a tick in a London park.
In January, Justin Bieber announced that he had been diagnosed with Lyme disease and chronic mono, and that it had been “a rough couple of years.”
It adds that patients “usually get better over time, but it can take many months to feel completely well.”
What Is Lyme Disease
Lyme disease is a bacterial infection. You get it when the blacklegged tick, also known as a deer tick, bites you and stays attached for 36 to 48 hours. If you remove the tick within 48 hours, you probably wonât get infected.
When you do get infected, the bacteria travel through your bloodstream and affect various tissues in your body. If you donât treat Lyme disease early on, it can turn into an inflammatory condition that affects multiple systems, starting with your skin, joints, and nervous system and moving to organs later on.
The chances you might get Lyme disease from a tick bite depend on the kind of tick, where you were when it bit you, and how long the tick was attached to you. Youâre most likely to get Lyme disease if you live in the Northeastern United States. The upper Midwest is also a hot spot. But the disease now affects people in all 50 states and the District of Columbia.
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