May is Lyme Disease Awareness Month, and that means this is the perfect time to refresh yourself on the signs, symptoms, and treatments associated with Lyme Disease. According to the CDC, about 300,000 people contract Lyme Disease every year.
Unfortunately, that’s just the number of confirmed cases because Lyme Disease is often misdiagnosed. In fact, it’s garnered itself the nickname “The Great Imitator” due to the way its symptoms can affect many parts of the body, effectively mimicking other diseases. A few of the diseases it has been mistaken for include:
- Depression and other mental illnesses.
- Chronic Fatigue Syndrome.
- Multiple Sclerosis.
- Bell’s Palsy.
Complicating matters is the fact that infected people don’t always test positive for the disease, and chronic results of Lyme Disease aren’t due to the presence of the Borrelia bacteria. It’s important to remember to not only remove ticks as quickly as possible, but to preserve the tick to bring to your doctor to accelerate proper diagnosis and treatment. If you don’t know if you could have been bitten by a tick, be sure to pay close attention to your health and visit your doctor if you suspect symptoms.
While there are some symptoms that may occur immediately simply for being bitten by an insect (e.g., bumps and itching around the bite location) those aren’t actually signs of Lyme disease. Not all signs of Lyme Disease will occur in all cases, but when they do occur, they will appear in as few as 3 days or as many as 30 days after being bitten. However, just because symptoms come and go, doesn’t mean that you haven’t been infected. These early signs include:
- Body aches.
- Rash (EM rash or Erythema migrans, which appears similar to a bull’s eye as large as 1 foot and may or may not occur at the bite location).
- Sore muscles.
- Stiff neck.
If you know you’ve been bitten by a tick and experience any of these symptoms, especially the EM rash, see your doctor immediately. The sooner you can be diagnosed the sooner you can be treated, and the risk of chronic Lyme Disease is decreased.
Common Early Symptoms
In addition to those early signs, there are some serious symptoms that can occur in early stages (several weeks after infection). Symptoms such as arthritis-like pain in the joints, most often the knees, can appear and may actually move from one joint to another. Other symptoms may include:
- Lyme carditis – some 1 in 10 people infected can develop abnormal heart function and related dizziness and shortness of breath.
- Eye inflammation.
- Loss of muscle tone or paralysis in one or both sides of the face.
- Swelling in the spine (meningitis) and associated severe headaches and joint stiffness.
- Sleeping problems.
These are more definite signs of Lyme disease, so if you experience any of these problems, especially accompanying early signs, see your doctor as soon as possible.
Chronic infections and Post-Treatment afflictions
Some symptoms don’t appear until years after being infected, especially if the infection was never treated. However, in 10% to 20% of Lyme Disease cases that are treated with antibiotics, people will still experience symptoms (via CDC); this is referred to as Post-Treatment Lyme Disease Syndrome (PTLDS).
These symptoms sound quite similar to the beginning stage symptoms, but the unfortunate difference is that PTLDS symptoms significantly impair a person’s quality of life. In rare cases, this includes death due to Lyme carditis. According to a survey conducted by LymeDisease.org, 40% of PTLDS patients are incapable of working due to their symptoms.
The chronic effects of Lyme Disease are not well understood, and clinical trials are being conducted. There is some evidence to suggest it may be an autoimmune disorder (via CDC). Unfortunately, since it’s so poorly understood, insurance companies are also unlikely to cover PTLDS, further complicating quality of life.
Additional PTLDS symptoms include:
- Cognitive problems, including short-term memory loss.
- Shooting pains.
- Sleep disorders.
- Tingling in hands or feet.
There are a few tests to check for Lyme Disease, however, there is one instance in which the presence of Lyme Disease is unquestionable — the EM rash. Its unique bull’s-eye qualities make it a distinctive diagnostic. There are also several possible co-infections, such as Babesia, Bartonella, Ehrlichia and Anaplasma. If you do not have the rash, your doctor will likely order blood tests to try and determine infection. Unfortunately, these are often performed before the body has had sufficient time to react, and false negatives can be quite common. For that reason, your doctor may refer you to a Lyme disease literate doctor, or LLMD. Most LLMDs use a two-tiered testing system for diagnosis, most often using the ELISA (enzyme-linked immunosorbent assay) or Western blot test to observe antibody responses. Even so, more than half of those tested will still receive false negatives.
Three other tests are possible, all of which are direct tests, i.e., they test for the bacteria itself rather than your immune response. Again, if performed too early, there won’t be enough of the bacteria present to prevent a false negative. However, when used at the appropriate time, these tests are highly sensitive and accurate. These are:
- Culture analysis – Lab technicians use a sample of body fluid (usually blood) to attempt to grow Borrelia spirochetes.
- Antigen detection – A body fluid sample is processed to determine if a unique Borrelia protein is present.
- Polymerase chain reaction test – This test uses a specialized process to detect the presence of Lyme Disease DNA.
Early treatment, especially in cases of early detection, is usually a course of antibiotics taken orally. In cases where heart health is a concern, doctors usually use an IV-administered antibiotic. Unfortunately, the results of long term antibiotics use are unfavorable at best and come with an additional set of risks and side effects. Also, it does nothing to prevent PTLDS, and since PTLDS is not fully understood, there’s not a specific treatment for it available. Often doctors will prescribe additional medications aimed at alleviating symptoms, especially pain. There are several off-label treatments doctors may also try, including special IV infusions and/or Hyperbaric Oxygen Therapy. The symptoms and possible disability associated with chronic Lyme are why education and prevention are so important. In this area, most counties even have Lyme prevention programs in place.