Chronic Lyme Disease Symptoms Checklist

Who’s At Risk Of Lyme Disease

Early Signs and Symptoms of Lyme Disease

The risk of getting Lyme disease is higher:

for people who spend time in woodland or moorland areas
from March to October because more people take part in outdoor activities

It’s thought only a small proportion of ticks carry the bacteria that cause Lyme disease. Being bitten doesn’t mean you’ll definitely be infected. However, it’s important to be aware of the risk and speak to a GP if you start to feel unwell.

Study Design And Patients

LymeProspect is a nationwide prospective cohort study on post-treatment persistence of symptoms in LB patients in the Netherlands. The study was approved by the medical ethics review committee Noord-Holland and conducted in accordance with the Declaration of Helsinki. All participants provided written informed consent. Between April 2015 and October 2018, adult patients with a new LB diagnosis, either physician-confirmed erythema migrans or disseminated disease, were eligible for inclusion .16 Patients were included after online self-registration or through participating clinical LB centers . For patients with EM included after online self-registration, their general practitioner was asked to confirm the diagnosis. Patients were requested to upload a photograph of their EM, which was classified by three independent experts . All patients were included before, or within a maximum of seven days after the start of antibiotic treatment. Inclusion did not interfere with standard diagnostic and therapeutic procedures.

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 .

Summary:

Joint pain that comes and goes, or moves from joint to joint, could be a sign of Lyme.

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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It Stays On The Clothes Not On Your Skin

An easy way to think about permethrin-treated clothing is to think of the dye in your favorite red t-shirt. Do you worry about the dye coming off onto your skin or hurting you in some way? Most likely you do not and you dont need to. Insect repellent clothing is same the repellent is bonded to the fabric fibers, so it stays on the clothes, not on your skin.

With permethrin-treated apparel, there is no need for continued reapplication. Other benefits are there is no chance of ingestion, eye irritation or ways to misuse the product.

For folks that want to use the do-it-yourself spray, their concern is based on labeling: I bought a can of permethrin spray to use for my shoes and it says not to use on bare skin. So it must be dangerous if it cant even touch my skin?

That does indeed sound scary, but the reasoning for that caution is not about danger, but effectiveness.

Permethrin for insect protection needs something to hold onto to work and last through multiple wearings. Human skin is too porous to hold the permethrin on the surface so there will be no long lasting repellent effect.

Liquid repellents that are made to go on the skin typically have some sort of petroleum base that keeps them from absorbing for at least a few hours. That is why you have to continually reapply.

Still worried about permethrin on the skin? In some instances, permethrin is actually used specifically on the skin in applications such as lice shampoo and scabies lotion.

Evidence Before This Study

In 2014, at the development of the LymeProspect study proposal, and at the start of the analyses in January 2019, PubMed was consulted using the following search terms: Borrelia Infections”, “Borrelia”, borrelia, borreliosis, Erythema Chronicum Migrans, Erythema Migrans, lyme, Lymes, Lyme’s, Neuroborreliosis. In between, and during the writing phase, new literature was searched periodically. In order to obtain a broad overview of existing literature, all studies on prevalence of persistent symptoms related to Lyme borreliosis were reviewed, without restrictions on design or date. Concerns about the perceived sequelae of LB are widespread in the Western world, but at the same time the attributed symptoms are highly prevalent in the general population. Reported prevalences in LB patients varied widely between 0 and 48%. This wide range may have been due to the variety in study characteristics such as a prospective or retrospective design, LB manifestations included, and divergent case definitions or follow-up durations. Furthermore, of many studies the power was limited, or the results were not controlled for background prevalence of symptoms and symptom severity. We designed the LymeProspect study based on the published data and on the strengths and lessons learned from previous studies.

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What If You Suspect Lyme Disease And Have Never Been Diagnosed Or Treated

If you suspect Lyme disease, even though you dont recall a tick bite from outdoor activity or a rash, its important to consult with a Lyme physician right away. Untreated, Lyme disease can spread to other parts of your body for several months to years after infection, causing arthritis and nervous system problems.

If You Dont Have A Website

Lyme Disease Signs and Symptoms (2 of 5) | Johns Hopkins Medicine

Or even if you do telling people about the Symptom Checklist. Download the high resolution version, and print it out at your office supply store you may be able to send it to them electronically. Put them up around town in clinics, libraries, laundromats, stores, vet clinics. Remember, Lyme Disease Awareness doesnt have to be limited to May!

Phyllis Mervine is Founder and President of LymeDisease.org.

Also Check: Signs You Have Lyme Disease

Chronic Lyme Disease Symptoms

If Lyme disease is not diagnosed and treated early, it may become late-stage or chronic. This may also occur when early treatment is inadequate. While some symptoms of chronic or late stage Lyme disease are similar to those of early Lyme, as the graphic below shows, there are important differences.

Lyme disease may spread to any part of the body and affect any body system. Typically, it affects more than one body system. In our survey, which drew over 5,000 responses, patients with chronic Lyme disease reported an average of three severe or very severe symptoms, with 74% reporting at least one symptom as severe or very severe.

An extensive list of symptoms of chronic Lyme disease was developed by Dr. Joseph Burrascano, a pioneer in treating chronic Lyme disease.

Dont Forget The Backpack

If you wear a backpack, it is important to treat that too. People forget that when a bag goes on the ground and if there are ticks nearby, they may just hop on looking for a ride to the closest person. As soon as that bag goes on your back, so do the ticks.

Insect repellent clothing is a game changer in tick prevention. It is registered for use for the entire family. That means infants, women who are pregnant or nursing and even your pets can use permethrin-treated products.

Insect Shield offers many pre-treated products and also has over 80 brand partners globally that sell a variety of products including shirts, pants, socks, hats, tents, blankets and dog products. We also have our Insect Shield Your Own Clothes service where you can send in your favorite clothes and we will add the repellent for you a super easy solution.

Insect Shield is a proud partner of LymeDisease.org. We support their efforts in helping the many people that are afflicted with this damaging and often life-changing disease.

Our goal is to help keep the ticks away so people can still enjoy the outdoors without worrying about the many potential dangers that ticks can carry. Insect Shield donates 10% of all purchases made through this link to LymeDisease.org.

Use coupon code LYMEDISEASEORG on InsectShield.com to receive 15% off your first purchase.

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.

How Is Lyme Disease Diagnosed

Some of the most common Lyme Disease Symptoms...only some.... and ...

A healthcare provider will diagnose Lyme disease based on symptoms, physical findings and whether or not you’ve been in an area populated by infected ticks.

Many people dont remember or know that theyve been bitten by a tick. This is because the tick is tiny, and its bite is usually painless.

Your provider will confirm the diagnosis using a blood test. If your first blood test is negative for Lyme disease, you won’t need another test. If the first test is positive or equivocal, your provider will conduct the test again. You have to have two positive results to be diagnosed with Lyme disease.

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The Experience Of Lyme Disease

In our book, Conquering Lyme Disease: Science Bridges the Great Divide, we review several of the key features of Lyme disease that can make the experience of this illness so challenging, including:

The politically charged climate
The protean nature of manifestations of the illness
The waxing and waning course of symptoms
The psychological ramifications of having an “invisible” chronic illness and the experience of invalidation
The challenge of having a disease that affects the brain and sensory system
The impact of uncertainty surrounding diagnosis, treatment, and prognosis

Do I Have Lyme Disease A Checklist Of Symptoms To Help You Learn More

Lyme disease is one of the most common illnesses in the United States, but its symptoms and means of transmission arent widely known. To help raise awareness, we have compiled some additional information on Lyme disease and developed a Lyme disease symptoms checklist for you to reference if youre showing some signs of infection. Use our checklist below and make sure you consult your doctor.

What is Lyme Disease?

Lyme disease is caused by a bacterial illness transmitted to humans by ticks. On the East Coast of the United States, the deer or bear tick is usually responsible for transmitting the disease, whereas on the Pacific Coast it is usually the black-legged tick. The symptoms can appear quickly or gradually over time. The first physical signs of the infection are often similar to the flu, which is why so many people, including doctors, often dismiss Lyme disease symptoms as the flu or the common cold.

How do you Contract Lyme Disease?

In terms of geographical reach, Lyme Disease can be found in many areas. Specifically in the United States, Lyme Disease usually does not occur nationwide and is concentrated mainly in the Northeast and upper Midwest areas. The CDCs Data and Statistics webpage illustrates a list of the 14 states that Lyme Disease has been previously reported. Lyme Disease is also found in a large portion of Asia, Europe and South America.

Symptoms

2 Responses

Nice and very informative article.

Lillian Schaeffer

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What Is The Outlook For Someone With Lyme Disease

Most of the people who get Lyme disease and receive treatment early will be fine. Treatment can cure Lyme disease but you might still have some long-term effects. Untreated Lyme disease may contribute to other serious problems but its rarely fatal.

Post-treatment Lyme disease syndrome

Even after proper treatment, some people may experience lingering fatigue, achiness or headaches. This is known as post-treatment Lyme disease syndrome or PTLDS. The symptoms dont mean that you still have an infection. PTLDS probably wont respond to additional antibiotics. The majority of people in this group will have symptoms that resolve at some point over the next six months.

Chronic Lyme disease

Chronic Lyme disease is a term used by some for a condition in a person who had Lyme disease and the symptoms of PTLDS. Some people consider chronic Lyme disease to be the same as PTLDS. However, some people receive a chronic Lyme disease diagnosis without a Lyme disease diagnosis. Sometimes, extended treatment with antibiotics helps.

This term may be why some people think a Lyme disease infection can occur without being bitten by a tick. There isn’t enough proof that mosquitoes can transmit Lyme disease. Many researchers dislike using the term chronic Lyme disease.

Symptoms In Early Disseminated Lyme Disease

Chronic Neuro Lyme Disease Symptoms

Early disseminated Lyme disease occurs days to months after infection, in which the bacteria have begun to spread. There is a wide range of possible symptoms at this stage, including:

Severe headaches and neck stiffness
Lyme Arthritis, especially in the knees or other large joints
Muscle aches and joint pains
Heart palpitations or shortness of breath
Facial paralysis on one or both sides
Numbness or tingling in the hands or feet
Severe Extreme fatigue

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Chronic Lyme Disease Symptom Severity

In LDos chronic Lyme disease survey, over 75% of patients reported at least one symptom as severe or very severe and 63% reported two or more such symptoms. Find out more about LDo peer-reviewed published surveys. The chart below shows the severity of ten common chronic Lyme symptoms.

The survey also found that patients with chronic Lyme disease have high disability and unemployment rates. Over 40% of patients with chronic Lyme disease reported that they currently are unable to work because of Lyme disease and 24% report that they have received disability at some point in their illness.

Etiology Of Lyme & Other Ixodes

lyme disease

Lyme disease is caused by members of the Borreliaburgdorferi sensu lato complex.

Co-infections

Black-legged ticks have been shown to transmit several other pathogens in addition to Borrelia burgdorferi.

It is important to consider co-infecting pathogens likeBabesia, Anaplasma, Ehrlichia and Bartonella for patients who have risk factors for those illnesses and/or persistent symptoms after antibiotic treatment for Lyme disease.
The frequency of tick-borne co-infections in Lyme disease patients from endemic areas ranges from 4 to 45%. When coinfections are left untreated, their continued presence increases morbidity and may prevent successful treatment of Lyme disease.
Laboratory evaluation for co-infecting pathogens can be challenging. Performance parameters of available tests are variable and do not always account for the different strains that may be responsible for illness.

Some of the most commonly encountered co-infections are:

Selected Other Tick-related Diseases

STARI, another important tick-borne diseaseSouthern tick- associated rash illness , a Lyme-like illness, has been associated with bites from the Lonestar tick , not blacklegged ticks. The bacterial pathogen has not been clearly established. Limited evidence supports antibiotic treatment similar to that for Lyme disease. The Lonestar ticks range continues to expand and in addition to its southern and central distribution now includes much of the northeastern US.

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Symptoms Of Lyme Disease

Many people with early symptoms of Lyme disease develop a circular rash around the tick bite. The rash:

usually develops around 3 to 30 days after you’ve been bitten
is often described as looking like a bull’s-eye on a dart board
will be red and the edges may feel slightly raised
may get bigger over several days or weeks
is typically around 15 cm across, but it can be much larger or smaller

Some people may develop several rashes in different parts of their body.

Around 1 in 3 people with Lyme disease won’t develop a rash.