About Lyme

What is Lyme Disease?

According to the American Lyme Disease Foundation (ALDF), Lyme disease (LD) is an infection caused by a type of bacteria known as Borrelia Burgdorferi. This bacterium is called a spirochete (pronounced spy-ro-keet) and is carried by deer ticks. It is transmitted through an infected tick to humans and animals alike.

All possible cases of Lyme disease are reported to state and local health departments by health care providers and labs. Cases are typically classified by standard criteria using guidelines from the Center for Disease Control (CDC). 9

According to their data, each year approximately 30,000 cases of Lyme disease are reported by state health officials. However, as it is often misdiagnosed, this number does not reflect every case diagnosed in the United States. Surveillance systems do not capture every illness, and thus we cannot be sure how many people actually get Lyme disease.

300,000+ cases CDC are saying now, but new evidence shows 2 million or more as it’s the fastest growing disease and misdiagnosed disease in US and all over growing fast.

How is Lyme Disease Diagnosed?

Lyme disease can be very tricky to diagnose. People can suffer for years without truly knowing what is wrong. It’s a complex infection that can affect various systems of your body. The most common symptom is a ring-like rash around the bite, but other than that, Lyme can go undiagnosed and untreated for years.

This can not only have serious physical effects on the body, but psychological ones as well. That’s why it is important to seek out a Lyme-literate doctor who specializes in the disease. Since symptoms of Lyme are similar to other diseases, the CDC recommends a two-step process when testing blood for evidence of antibodies against Lyme.

However, there are many issues with Lyme disease blood testing, with people receiving both false negatives and positives. Therefore, it is important to base the diagnosis on a variety of symptoms, tick exposure, medical history, and endemic locations (where you are located). Blood tests should only be used as supporting evidence to a diagnosis.

There is promise. New reports acknowledge the need for better testing. Newer methods in direct detection and natural remedies can help thousands of people with Lyme get the recognition and treatment they need.

If You are Bitten

If you suspect you have bitten, wash the infected area immediately. Watch it closely and if you see any rashes, consult your physician. Even if it is not located at the site of the bite, a rash can be an early indication of Lyme.

Take a picture of the area, date it, and keep it in your medical record. Keep a log of your symptoms, including those that come and go over time. Fluctuating symptoms are actually an early sign of Lyme. You should also keep a record of any medications you take and the frequency. This includes non-prescription drugs.

Diagnosing Children

Children are sometimes the most difficult to diagnose because they have trouble expressing what is truly wrong. Irritability, joint aches, and difficulty concentrating can be signs of Lyme that mask themselves behind growing pains.

This is why some legitimately sick children are made to feel like all of the problems are simply in their head. This can have after-effects like anxiety, insomnia, and depression. It may seem like a child is misbehaving when, in fact, a tick-borne illness is the problem.

Lyme disease can have more than 100 symptoms. This is why it is so important to pay attention to your body and seek a variety of opinions.

Finding a Lyme-Literate Doctor

The current means of testing for Lyme disease is relatively inadequate. That’s why, to receive a thorough diagnosis, you should seek out a doctor that specializes in Lyme. There is a general lack of knowledge surrounding the disease and thus, the more Lyme-literate your doctor is, the more likely you will be properly diagnosed and treated.

Here are a few resources to find a Lyme-literate professional in your area:

If you need help finding someone in your area, do not hesitate to reach out. It’s important if you suspect you have Lyme disease, to seek treatment as soon as possible.

Stages of Lyme Disease

Lyme disease typically occurs in three stages: early localized, early disseminated and late disseminated. Not everyone will go through all three stages and sometimes, they can overlap.

One of the first signs of infection is typically called the “bulls-eye rash.” However, people can develop any rash (or none at all). This is what makes diagnosis so tricky. In most cases, Lyme disease starts with flu-like symptoms.

Stage One

The early localized stage of Lyme disease occurs a few days to a few weeks after being bitten by a tick. The infection is considered “localized” because it has not yet spread to the rest of the body.

At this stage, Lyme is the easiest to cure. That is why acting quickly is so important. Symptoms of stage one may include:

Sore throat
Flu-like illness (fever and chills)
Swollen glands
Fatigue
Headache
Stick neck
Rash

Lyme feels more like a bad cold at this stage and can be treated easier.

Stage Two

After several weeks to months of being bitten, early disseminated Lyme disease means the bacteria is beginning to spread throughout your body. In addition to feeling ill from a flu, this stage is often characterized by an increase of symptoms like:

Fever
Fatigue
Chills
Headaches
Muscle aches
Pain or weakness in limbs
Changes in vision
Heart problems (palpitations or chest pain)
Rash
Bell’s palsy (facial paralysis)

Treatment at this stage will be much more involved. The sooner you seek help, the easier it will be to manage your health.

Stage Three

When Lyme disease goes untreated, it turns into stage three, which is known as “late disseminated.” At this point, the disease has progressed, and you may be experiencing more serious issues. This can occur weeks, months, or even years after being bitten. That’s why vigilance is so important.

Once the Lyme bacteria has spread, many people develop chronic arthritis, neurological problems, and heart difficulties. Other symptoms include:

Severe headaches or migraines
Continued fatigue
Vertigo or dizziness
Arthritis in joints near the site of infection
Disturbances in heart rhythm
Aching, stiff neck
Migrating pains (that come and go) in joints/tendons
Concentration issues or mental fogginess
Insomnia or sleep issues
Numbness in feet, hands, legs, and arms
Problems processing information

At this stage, people may feel like their head is in a cloud. If you feel you have any (or several) of these symptoms after being bitten by a tick, seek a Lyme-literate physician immediately for further testing.

Lyme Disease Testing

There are many ways to test for Lyme disease, and nothing is yet a perfect science. The two most common diagnostic tests are the enzyme-linked immunosorbent assay (ELISA) and the Western blot. Both of these tests will measure the presence of antibodies in your system that are formed to fight Borrelia burgdorferi, the bacterium that causes Lyme.

According to the International Lyme and Associated Diseases Society (ILADS), these tests do not always help to form a definitive diagnosis. Both the Western blot and ELISA are indirect tests that are measuring an antibody’s response (and not the infection itself). That means they can be unreliable. It can take weeks to generate enough antibodies to be detected by these tests and, as a result, these tests may give false negatives if done too early.

ELISA

This is the test administered when Lyme disease is first suspected and measures the antibodies against Lyme bacteria. According to the CDC, if this test proves negative, no further testing is needed. This could have dire consequences. Getting a second (and third and fourth) opinion is recommended, rather than accepting the results of the ELISA alone. Especially if it is in the early stages of symptoms.

If an ELISA is positive, further testing is recommended. However, an ELISA is falsely negative about 50% of the time. Unfortunately, many people are not further tested beyond this point and their disease may progress to further stages.

In 2000, the Lyme C6 Peptide ELISA was developed by Tulane University. Much more efficient than a regular ELISA, it can confirm exposure in more than 60% of patients. However, like all the other tests, it still has a considerably high rate of false negatives.

Western Blot

This is typically run as a second-stage test for Lyme after positive results from ELISA. Although it tests for antibodies, what it also looks for is reactivity against a panel of 10 different proteins found on the Lyme bacteria.

According to the CDC, five of these bands must show positive for the overall result to be deemed positive. The Western blot is typically considered the most reliable test available (although it is still only about 80% accurate). The danger lies in the fact that many doctors will not even consider the Western blot test until the ELISA shows positive. Even when the false results are a 50-50 chance. That’s what can make Lyme disease so dangerous.

However, Lyme-literate doctors consider five very specific bands to be indicative of Lyme. If any of these show positive, it is likely the patient is infected. These include:

At this point, treatment is warranted. If you want the most accurate results possible, you should ask your physician to conduct both tests. Even if your insurance will only pay for one, you may consider paying for the other out of pocket. It is your health at stake, after all. Since results may also differ by laboratory, you may also want to ask your physician to consider sending out your test to several for the most accurate results.

Alternative Tests

Polymerase chain reaction assays (PCR)

The mainstay for laboratory testing for Lyme disease, two-tiered antibody PCR tests are being applied more often in clinical environments. This test is typically used to determine a current infection if your Lyme symptoms have not gotten better after treatment.

This involves drawing cerebrospinal fluid from an infected joint to study the DNA. A positive PCR test practically guarantees you have Lyme. However, even false positives here can occur if the lab does not perform the test properly.

Co-Infections

There are certain types of infections that co-exist with Lyme and can be indicative of the disease. An increasing number of ticks have been discovered to transmit multiple infections at once. If your doctor finds a presence of any of the following infections, there is a good chance you also have Lyme:

Keep in mind, some of the tests for these infections may differ from those of Lyme. However, when it comes to Lyme, you can never have too much testing.

As a patient, you always have a right to request any testing necessary. You also have a right to copies of all your results. Be your own best advocate. Always keep up-to-date and accurate records and pay close attention to your health.

Symptoms of Lyme Disease

Lyme disease can attack almost any system in the body. That’s what makes it so difficult to diagnose. It is actually referred to as the “great imitator” because it can mimic the symptoms of several different conditions, like Lupus, arthritis, and multiple sclerosis. Signs you may have Lyme can include:

Muscle aches
Neck stiffness
Joint pain
Neurological issues
Heart problems
Fever and chills (flu-like)
Bulls-eye rash (or any other rash)
Headaches or migraines
Low-grade fever
Facial paralysis
Nausea and vomiting
Hearing loss

Symptoms can be subtle and unpronounced at first. For additional resources on symptoms of Lyme disease, consider some of the following sites: