Moving Forward With Chronic Illness
Today Tait works as a writer and speaker. Her first book publishing in August, The View from Rock Bottom: Discovering Gods Embrace in our Pain, chronicles her journey with her health and how it impacted her faith. Writing gives her the freedom to work from home, but she’s well aware that for many years the financial burden has been on her husband, a software developer.
They recently took a rare vacation to Mexico. It was the first time theyd been on a plane together since their honeymoon more than a decade ago.
Tait has days when she feels strong enough to attend a speaking engagement at a church or play with her kids at the park. But she also has days when she struggles to move her body and relies on her cane.
For Tait, the hardest part is knowing that she would, in all likelihood, be completely healthy today had she just been diagnosed sooner. And the scariest part is knowing that it was all out of her hands.
I was asking for the right tests. I was saying the right things. I was showing up constantly and saying, This isnt working, Im not well. But eventually you start to doubt yourself, when you hear enough times that maybe its all in your head.
Now that she has answers, she can at least begin to move forward.
What Is Lyme Disease
This bacterial infection is spread through the bite of a young deer tick or black-legged tick. These eight-legged creatures, about the size of a poppy seed, can be found in wooded and grassy areas throughout the United States, especially in New England and the Rocky Mountains.
Because these ticks are so small, most people donât realize when theyâre bitten. But the longer a tick stays attached to you, the more likely it is to transmit Borrelia burgdorferi , if the tick is a carrier.
If not found and treated, Lyme disease can lead to problems with your joints, heart, and nervous system. It can even affect your memory.
Are There Any Risks To Lyme Disease Tests
There is very little risk to having a blood test or a lumbar puncture. If you had a blood test, you may have slight pain or bruising at the spot where the needle was put in, but most symptoms go away quickly. If you had a lumbar puncture, you may have pain or tenderness in your back where the needle was inserted. You may also get a headache after the procedure.
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Extended Antibiotics For The Treatment Of Post
Three research groups have examined prospectively the effectiveness of prolonged antibiotic courses for post-Lyme disease syndromes., All trials had strict entrance criteria similar to the aforementioned definition of PLDS. The Klempner and colleagues study reported 2 parallel trials in which their cohort of 129 subjects was divided into seropositive and seronegative arms. Subjects randomized to treatment groups received 30 days of intravenous ceftriaxone followed by 60 days of oral doxycycline. Those randomized to the placebo arm received IV placebo for 30 days, followed by an oral placebo for 60 days. The primary outcome was health-related quality of life as assessed by standardized instruments . These instruments were administered at baseline, and then 30, 90, and 180 days. There was no difference in any outcome measure between placebo and treatment groups in either the seropositive or seronegative arm, or in a detailed battery of neuropsychological tests that was published subsequently. Although all patients had complained of cognitive dysfunction at baseline , objective measures of cognitive function, such as memory and attention, were normal compared with age-referenced normative data. Depression, anxiety, and somatic complaints improved in both the antibiotic and placebo arms groups between baseline and day 180.
Lyme Disease Infection Timeline
Infection time: 24 to 36 HoursIn order to be infected by a tick bite, a tick must be attached for at least 24 hours. If you think thats a long time to not even know you have a tick on you, think again. Nymph ticks are so tiny, they often go unnoticed. Thats why they are the biggest spreaders of Lyme infection. Its easy for a person or a pet to have a tick attached for 24 to 36 hours unnoticed. Some people never know they had a tick attached at all!
Early symptoms begin to show: Within 30 DaysIf a person shows early symptoms of Lyme, it usually occurs within 30 days after infection. The problem is, many never show symptoms, or overlook their symptoms. People, who work outdoors, or spend lots of recreational time outdoors, should be mindful of potential early onset Lyme disease symptoms. Fever, fatigue, and body aches are among the most common symptoms, as well as a bulls eye rash around the tick bite. If symptoms do not occur within 30 days, they can be more severe. Early Lyme disease can be cured with doxycycline. The length of treatment will depend on whether the infection is localized or has begun to spread through the body.
See more tick and Lyme disease questions and answers:
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How Do I Know Whether I Have Received A Sufficiently Long Course Of Antibiotic Therapy
Taken together, these study results suggest that repeated antibiotic therapy may be beneficial for a subgroup of patients. However all of these studies also reported troubling adverse effects associated with the IV antibiotic therapy. Given these potentially dangerous risks, it is clear that other safer and more durable treatments are needed for patients with persistent symptoms.
Stage : Early Disseminated Lyme Disease
Early disseminated Lyme disease occurs several weeks to months after the tick bite.
Youll have a general feeling of being unwell, and a rash may appear in areas other than the tick bite.
This stage of the disease is primarily characterized by evidence of systemic infection, which means infection has spread throughout the body, including to other organs.
Symptoms can include:
- disturbances in heart rhythm, which can be caused by Lyme carditis
- neurologic conditions, such as numbness, tingling, facial and cranial nerve palsies, and meningitis
The symptoms of stages 1 and 2 can overlap.
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Living With Lyme Disease
Most people treated in the early stages of Lyme disease make a quick and complete recovery. Some may experience symptoms for a few weeks after treatment. If you were treated for Lyme disease but you still dont feel well, call your family doctor. He or she can make sure there isnt something else wrong. They can help you find ways to ease your symptoms. Some patients have found relief with treatments typically used for chronic fatigue syndrome or fibromyalgia.
Other things you can do to help manage Lyme disease include:
- Educate yourself.There is a lot of inaccurate information to be sorted through, especially on the internet. Ask your doctor if you have questions.
- Track your symptoms.Keep a diary of your sleep patterns, eating habits, exercise routines, and how youre feeling. You or your doctor may be able to make connections between them.
- Take care of yourself.Eat a healthy diet. Exercise as regularly as you can. Get plenty of rest.
Find support. It can be hard to not feel well and not know why. Some people may think your symptoms arent real. Talk to friends and family. If they cant offer support, talk with a counselor who can help you.
Most Patients Dont Just Have Lyme
Coinfections to Lyme disease are the rule, not the exception. Most infected ticks also carry other common coinfections like Bartonella, Babesia, Rocky Mountain Spotted Fever, and about a dozen others. And just like with Lyme, the testing for these other infections is unreliable and expensivewhich means it can be incredibly hard to nail down an exact cocktail of bacteria that are invading your body. Which obviously makes figuring out what treatment is appropriate just as tricky.
I could make this post 100 items long, but these are the big things I want people to know about this disease. As always, when I speak about my personal journey with Lyme, please try to remember that I am under the care of a small army of very qualified health care professionals who have my best interest at heart. I know you want to help, and gosh, do I ever appreciate that sentiment, but please try to refrain from offering me medical advice over the internet. For my mental health, I am choosing to believe that my care is in good handsand I appreciate your support in that! ?
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What Are The Second Stage Signs And Symptoms Of Lyme Disease
The symptoms of second stage, early disseminated, Lyme disease can be difficult to attribute. Symptoms include severe fatigue, fever, pain, intermittent weakness and achiness of the muscles and joints, numbness in arms and legs, vision changes, and cognitive dysfunction such as short-term memory difficulties and problems multitasking. These symptoms are not specific for Lyme disease and can make the diagnosis of second stage Lyme disease very challenging.
More recognizable Lyme disease nervous system manifestations include facial paralysis , or meningitis with severe headache and stiff neck. Notable cardiac manifestations include passing out or feeling faint from an abnormally slow heart rate, irregular heart palpitations, or unexplained difficulty tolerating exercise. Meningitis and carditis are both potentially serious Lyme disease conditions and warrant immediate medical attention.
What Happens At Your Appointment
The GP will ask about your symptoms and consider any rash or recent tick bites you know about.
Lyme disease can be difficult to diagnose. It has similar symptoms to other conditions and there’s not always an obvious rash.
2 types of blood test are available to help confirm or rule out Lyme disease. But these tests are not always accurate in the early stages of the disease.
You may need to be retested if you still have Lyme disease symptoms after a negative result.
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Are There Any Diseases That Can Be Misdiagnosed As Lyme Disease
Lots of diseases could be misdiagnosed as Lyme disease. This of course makes sense when you know that Lyme disease itself may manifest as a multisystemic disorder that can mimic other diseases. This means that just as the Lyme disease might be “missed” in some cases, some individuals may be misdiagnosed as having Lyme disease when in fact they have another disease. Erring on either side of this diagnostic divide can be dangerous. Given that the main symptoms that afflict patients with Lyme disease are fatigue and pain and given that these are non-specific symptoms seen in a wide ranges of diseases, including cancer, hematologic, and endocrine disorders, one has to make sure to rule out other reasonable causes of fatigue and pain before making the diagnosis of Lyme disease. It is also important to realize that a patient can have two independent diseases – Lyme disease and another emergent condition. For example, concurrent depression,sleep apnea or hypothyroidism may exacerbate fatigue in a patient with actual Lyme disease.
Early Symptoms Of Lyme Disease
Symptoms of Lyme disease in humans can be vague, and chances are you have no idea youve been bitten by an infected tick until symptoms surface.
Ticks secrete an anesthetic that makes their bites painless, explains Christine Green, MD, a family physician in Mountain View, California, and a member of the Bay Area Lyme Foundations scientific advisory board. Plus, theyre tiny. A young, immature tick, called a nymphthe stage of development during which these bloodsuckers are most likely to transmit Lyme diseaseis roughly the size of a pinhead when it latches on, so you dont know its there, she tells Health.
According to the CDC, the incubation period for Lymein other words, the time between a persons exposure to Borrelia bacteria and symptom onsetranges from three to 30 days. The main symptoms of Lyme disease in the early days and weeks after infection can include:
- Fever
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Everything About Lyme Disease Is Controversial
This is probably the first thing you should know about Lyme Disease. Everything about it is controversial. Ive had multiple health care professionals say to me that Lyme is *the* most hotly debated topic in the medical community right now. Well cover some of why its so controversial later in this post, but what you need to know is this: all this controversy hurts exactly one group of peoplethe patients. It makes navigating the entire processfrom getting diagnosed to affording treatment100x harder for sick people. Which is justwrong.
Later Symptoms Of Lyme Disease
In early disseminated Lyme disease, which occurs weeks to months after the tick bite, other symptoms may develop, including:
- Additional erythema migrans lesions
- Nerve pain.
- Facial or Bell’s palsy, a paralysis or weakness in the muscles on one side of the face.
- Lyme carditis, in which Lyme disease bacteria enter the tissues of the heart and interfere with the normal process that coordinates the beating of the heart symptoms include palpitations, chest pain, or shortness of breath.
Late disseminated Lyme disease, which develops months to years after the infection begins, may cause:
- Arthritis with severe joint pain and swelling, especially in large joints such as the knees
- Pain in the tendons, muscles, joints, and bones
- Abnormal muscle movement
- Numbness and tingling in the hands or feet
- Cognitive problems, including issues with speech and short-term memory
- Severe headaches and neck stiffness from meningitis
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Later Signs Of Lyme Disease
What if Lyme disease isnt detected early on? The longer that disease-causing bacteria linger in the body, the more they disseminate, and as these microbes spread to tissues throughout the body, they can trigger a litany of symptoms. CDC says these may include:
- Severe headaches and neck stiffness
- Additional EM rashes. These lesions may pop up on other areas of the body
- A type of facial paralysis known as Bells palsy
- Arthritis with severe joint pain and swelling. Knees and other large joints are vulnerable
- Intermittent pain in tendons, muscles, joints, and bones
- Nerve pain
- Shooting pains, numbness, or tingling in the hands or feet
You might have persistent or episodic symptoms, says Dr. Green. Pain that seems to move through the body? Thats common too. The hallmark of late Lyme is migratory joint pain: today my right knee hurts and tomorrow Im limping on my left ankle, and, oh, my third finger of my right hand swelled up, and, oh, my neck has swelled up, she says.
In rare cases, Lyme disease bacteria can enter the tissues of the heart. This complication, called Lyme carditis, can lead to lightheadedness, fainting, shortness of breath, heart palpitations, or chest pain.
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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 .
Summary:
Joint pain that comes and goes, or moves from joint to joint, could be a sign of Lyme.
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I Am Wondering If Columbia University Uses Xenodiagnosis For Detection Of Infectious Diseases
This is an interesting question. Xenodiagnosis in this case refers to allowing an uninfected tick to feed on an individual with suspected infection to see whether the tick is able to suck up spirochetes when the spirochetes might not have been detectable otherwise. As strange as this concept appears, it has been used successfully recently by Dr. Steven Barthold at UC Davis. After being unable to identify persistent infection in a treated infected mouse using the standard PCR and culture techniques, he was then able to identify the spirochetes in these mice after treatment using the xenodiagnosis method. We at Columbia are not using this method on humans. This is a very intriguing scientific question that should be studied in humans.
The Centers for Disease Control publishes national statistics and identifies those counties with the highest rates of Lyme disease in the United States. The web sites of many state health departments provide data on Lyme disease by town of residence.
Support groups can be found by calling the Lyme clinics or Lyme disease organizations in your state. You might also call a national organization, such as the Lyme Disease Association for the names of support groups in your area.
Persistent Symptoms After Treatment For Lyme Disease
It is well-recognized that some patients experience prolonged symptoms during convalescence from Lyme disease, and a subset suffer significant functional impairment., The most common complaints among such patients are arthralgias, myalgias, headache, neck and backache, fatigue, irritability, and cognitive dysfunction .
A working definition was developed to categorize patients with post-Lyme disease symptoms , those patients with persistent clinical symptoms after treatment for Lyme disease, but who lack objective evidence of treatment failure, reinfection, or relapse . PLDS is not strictly speaking a coherent clinical diagnosis its primary value has been to define a patient cohort for further study. Nonetheless, it is worth considering how it conceptually differs from CLD. To meet criteria for PLDS, patients must have unequivocal documentation of appropriately treated Lyme disease, lack objective manifestations of Lyme disease, and have persistent symptoms that cannot be explained by other medical illnesses. Thus, of patients with chronic symptoms that have been attributed to Lyme disease, those meeting criteria for PLDS are those for whom infection with B burgdorferi is most plausible. This makes the studies of PLDS paradigmatic for the understanding of CLD.
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