Living With Lyme Disease Felt Like Being Unable To Pull Up The Blinds On The Window And See The Sky
Living with Lyme Disease felt like being unable to pull up the blinds on the window and see the sky. I could still get through my day and moderately take care of my children, but I had no sense of a life beyond what was right in front of me, nor the ability to imagine one.
It’s hard to say exactly how my chronic Lyme developed. I’d taken antibiotics for a bullseye rash in 2002 but never experienced any symptoms until after the birth of my second child in 2010. Did I get another tick bite? Did the stress of the pregnancy trigger the fatigue and brain fog which came on with a vengeance after I’d seen an osteopath for a regular postpartum adjustment? Did that treatment release some long-dormant bacteria back into my bloodstream?
What matters is that I felt like a shell of myself. For years. Going up stairs left me out of breath, something I wouldn’t have believed possible when I’d run a ten-miler one weekend and a half-marathon back-to-back, just a few months before getting pregnant. If I had to carry my baby or wear her in a sling, my endurance was even lower. Walking uphill to get my older child at the bus stop required significant recovery before I could even fathom starting to make dinner. If I attended a PTA meeting on a Tuesday and a parenting talk on Thursday, I was exhausted for days.
For now, I’m thrilled to no longer feel like I’m swimming through jello, finally able to move freely through the world.
How You Get Lyme Disease
If a tick bites an animal carrying the bacteria that cause Lyme disease, the tick can become infected. The tick can then transfer the bacteria to a human by biting them.
Ticks can be found in any areas with deep or overgrown plants where they have access to animals to feed on.
They’re common in woodland and moorland areas, but can also be found in gardens or parks.
Ticks don’t jump or fly. They climb on to your clothes or skin if you brush against something they’re on. They then bite into the skin and start to feed on your blood.
Generally, you’re more likely to become infected if the tick is attached to your skin for more than 24 hours. Ticks are very small and their bites are not painful, so you may not realise you have one attached to your skin.
Youre Sensitive To Touch
With your sense of touch on high alert with Lyme disease, certain clothing textures might feel unbearable, and you might recoil from a persons touch. The sensitivity could be so strong that children might have outbursts when they cant tolerate certain feelings against their skin. Kids can have temper tantrums and refuse to get dressed when the reality is they cant tolerate the feeling of particular kinds of clothing or texture, Leventhal says.
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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 Happens If You Go Untreated For Lyme Disease
Lyme disease is most dangerous from May to September, when young ticks are most likely to bite. The bacteria can cause flu-like symptoms in humans, and if left untreated, it can attack many tissues, including the heart and nervous system, and trigger an immune response that can lead to Lyme arthritis.
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Early Detection Is Key
Lyme disease is easiest to treat at the early or acute stage, within the first 30 days of exposure. This is why its so important to take precautions to prevent tick bites, both during and outside of tick season. Protect yourself when near potential tick habitats, always perform tick checks after outdoor activity , and dont delay seeking medical attention if you notice any symptoms that might be related to tick-borne illness. Its important to get tested as soon as possible for the best chances of recovery.
Some Chronic Lyme Disease Symptoms
As mentioned, chronic Lyme disease consists of a broad cluster of physical, cognitive, and psychiatric symptoms. Some of these symptoms are much more common, while others almost never occur, but can be deadly. But even the less severe symptoms, such as chronic fatigue and pain, can lead to drastic changes in quality of life for chronic Lyme patients.
Chronic Lyme survivors have reported experiencing the following symptoms for months to years after infection:
- Intermittent fevers, chills, and sweats
- Chronic inflammation
- Numbness and tingling in the limbs
- Dizziness and shortness of breath
- Heart palpitations and irregular heartbeat
- Anxiety and paranoia
- Multiple-chemical sensitivities
Chronic Lyme disease can be linked to deadly symptoms, such as Lyme carditis .
According to Lymedisease.org, studies consistently show that chronic Lyme disease patients have poorer quality of life than those with other chronic diseases. One of their own studies showed that 75% of surveyed patients reported at least one symptom as severe or very severe.
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Chronic Lyme Dos And Don’ts
Chronic Lyme disease is an ongoing Borrelia burgdorferi infection that can involve any body system or tissue. The infection produces a wide range of symptoms and signs, which can be debilitating for some patients. Common symptoms include severe fatigue, migratory musculoskeletal pain, headaches, and impaired memory. Unfortunately, chronic Lyme disease is complex and often misunderstood, which means that many patients will struggle to obtain the care they need to regain their health. Every patient concerned about Lyme disease and tick-borne illness should know the following.
What Are Lyme Disease Flare Up Symptoms
If you experience a flare-up, that means your Lyme disease symptoms have been dormant for a while, and now they are back. Lyme disease flare-up Symptoms that return can be more intense, and sometimes, new symptoms will appear. As a flare-up begins, symptoms range from mild to severe and may include:
As flare-ups start to subside, you will notice a significant improvement in your symptoms.
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Risk Factors For Post
Youre at a greater risk for post-treatment Lyme disease syndrome if youre infected by the bite of a diseased tick. If the infection progresses to the chronic stage, your symptoms might continue for weeks, months, or even years after the initial tick bite.
You may also be at a higher risk for these long-term symptoms if youre not treated with the recommended antibiotics. However, even people who receive antibiotic therapy are at risk. Because the cause of post-treatment Lyme disease syndrome is unknown, theres no way to determine whether it will progress to the chronic stage.
Typically, the symptoms of post-treatment Lyme disease syndrome resemble those that occur in earlier stages. People with persistent symptoms often experience lingering episodes of:
Chronic Lyme Disease Vs Acute And Late Stage Lyme
One reason chronic Lyme disease is harder to detect and treat than Lyme at earlier stages is that chronic Lyme disease symptoms are more wide-ranging and varied. Chronic Lyme disease can cause symptoms of early Lyme disease such as fatigue and muscle aches to recur, but it can also cause new symptoms that affect different parts of the body.
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How Long Does Lyme Disease Last
If Lyme disease is caught in the early localized stage, it is highly treatable and should be cured within two to four weeks of oral antibiotic treatment. That said, even with successful treatment, some patients continue to experience the symptoms of Lyme disease for six months or longer after treatment has been completed. This response is an autoimmune condition known as post-treatment Lyme disease syndrome , for which there is no proven treatment besides non-steroidal anti-inflammatory drugs that can be purchased over the counter. When Lyme disease goes untreated, it can have far-reaching effects that last for months or years.
Chronic Lyme: What Happens When Lyme Goes Untreated
The Lyme community typically uses the term chronic Lyme disease to describe a range of physical, cognitive, and emotional symptoms that crop up after getting Lyme disease and persist for months to years after infection.
The risk of chronic Lyme increases the longer a Lyme infection goes untreated or undertreated. In other words, patients are more likely to recover fully if their Lyme infection is detected and treated as early as possible after the discovery of a tick bite. This stage is usually marked by symptoms such as fevers, chills, muscle aches, and sometimes rashes.
When left untreated or undertreated, however, Lyme disease can spread throughout the body and affect:
- The central nervous system
- Muscles and joints
As Lymedisease.org points out, these symptoms can evolve, disappear, and reappear at different times.
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Youre Sensitive To Light
Lyme disease can make people extremely sensitive to light, sometimes to the degree that they need to wear sunglassesor even sleep masksindoors. Theyll wear these extremely dense sunglassesalmost as dark as somebody whos a welder would wear, Dr. Liegner says. Its so painful for them to perceive light.
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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Neck Pain From Lyme Disease
Lyme disease is commonly associated with tick bites and a big circular rash. However, a tick bite does not hurt and many people do not recall being bit or seeing the rash. Further complicating matters, Lyme disease symptoms may start out minor and not become problematic for months or longer.
Lyme disease causes neck pain in more than 30% of cases. Watch:Neck Pain Causes Video
Media reports rarely focus on neck pain with Lyme disease, but some estimates note that it occurs in more than 30% of the cases and is typically one of the earlier symptoms.1 Recognizing Lyme disease early and seeking treatment can make a big difference in the outcome.
What A Lyme Disease Flare Is Like For Me
I stink. Or at least my grimy hair does, and were a solid day past anything a little dry shampoo can save. But my eyes must weigh at least a thousand pounds, and my lungs are like cranky little boxes with a waiting line behind them. No matter whose turn it is, they never quite get filled, and so theyre just piled up with one angry customer after another. And dont get me started on my heart. What is his deal today? He woke me up several times throughout the night with the force of his pounding and racing. These folks are not going to be happy about standing up in the shower.
But my hair is grimy. Joints chime in before Ive even firmly planted both feet within the shower stall. They are not having this stepping and bending nonsense. For whatever reason, even the most benign thoughts leave me with a pressing tightness around my chest. And as I remove my hands from washing the back of my hair, I find both of them disguised by the wads of hair that came with them no longer attached to my head. What is going on today? Oh, right.
This is a Lyme disease flare for me.
Awesome, I think, mentally running through all the things that need to be done within the next several days that most certainly will not occur. And I carefully consider which ones I must force myself to do regardless of the cost. These generally center on my kiddos.
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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.
What Causes A Lyme Disease Flare Up
There isnt one reason or trigger for a Lyme flare-up, but multiple factors contribute to a return of Lyme disease flare-up symptoms. Lyme disease affects each person differently. Some can treat Lyme with antibiotics and not have any flare-ups. Others treat Lyme disease using various methods yet continue to experience flare-ups for years after the initial tick bite.
Theories exist about the causes of Lyme flare-ups. Some believe the bacteria Borrelia burgdorferi triggers the onset of other autoimmune disorders with similar symptoms. Others believe there may be clusters of bacteria that figured out how to survive and reactivate after a period of dormancy.
Co-infections, viruses, and illnesses cause flare-ups, as well as what you eat and drink. Food high in processed sugars and carbohydrates increases inflammation. Studies show when someone decreases their sugar intake, inflammation markers also decrease.
The truth is more research is needed to determine the exact cause of a Lyme disease flare-up. However, there may be common risk factors associated with flare-ups, such as stress of any kind.
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What Can Be Done To Prevent Lyme Disease Flare
The first key to living with Chronic Lyme disease is finding a doctor and treatment regimen that works for you. Treatment and methods of prevention through lifestyle are different for every patient. However, there are some general guidelines, which anyone with Chronic Lyme could follow to promote a healthier lifestyle and thus, less flares.
Lyme disease is a sad fact of the world we live in. Chronic sufferers face a lifetime of health maintenance and treatment. Lyme disease flare-ups can really affect physical and emotional well-being.
Consider year-round tick control for the prevention of Lyme, and seek immediate medical attention if you believe you have been bitten by an infected tick.
You Have Panic Attacks
Some Lyme patients experience extreme fear. The episodes pass after a short time, but they can be scary in the moment, Smith says. With a panic anxiety attack, oftentimes the heart starts racing and they get this fear and think theyre going to die, she says. Dont miss these other clear signs of a panic attack.
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Alternative Treatments For Lyme Disease Flare
Lyme-literate doctors are equipped with the most advanced technology to offer quick procedures that help you feel better, like intravenous vitamin and antibiotic infusions. Most antibiotics and vitamins taken orally are broken down in the digestive system, with only a percentage making it to your bloodstream.
The antibiotics and vitamins go directly into your bloodstream with intravenous infusions, where Lyme bacteria are hiding.
Additional alternative treatments for Lyme disease flare-ups include
- Chelation therapy