Diagnosing and treating Lyme disease
Katie Carpenter | 09.09.13
“For a Lyme disease case that’s caught right away, that’s in first few weeks, and is treated properly, which could be anywhere from a month to two months of antibiotics, 90% of them are cured," says Doug Fearn, President of the Lyme Disease Association of Southeastern PA. Fearn knows about symptoms and treatment firsthand because he experienced the disease himself.
He says, “The CDC says that physicians should not use a blood test to diagnose Lyme. They should use it as supporting evidence. What they should do is base your diagnosis on signs, symptoms and exposure to ticks.” Scroll down for symptoms and treatment options.
Watch the video to learn more:
Fearn says, “Most people who are bitten by a tick get more than just Lyme. The ticks carry multiple diseases.” Common tick-borne diseases in our area include babesiosis, ehrlichiosis, and bartonella. In order for a patient to recover, the diseases need to be treated in addition to the Lyme disease.
The doctor might order a blood test three to four weeks after the onset of the suspected infection to look for antibodies against the bacteria. Unfortunately, the Lyme disease bacterium itself is difficult to isolate or culture from body tissues or fluids.
A diagnosis should be based on symptoms, not always on a blood test result.
These blood tests are:
- ELISA. This blood test measures the levels of antibodies against the Lyme disease bacteria that are present in the body. Antibodies are molecules or small substances tailor-made by the immune system to lock onto and destroy specific microbial invaders.
- Western blot. This blood test identifies antibodies directed against a panel of proteins found on the Lyme bacteria. The test is ordered when the ELISA result is either positive or uncertain.
The presence of antibodies, however, does not prove that the bacterium is the cause of a patient's symptoms. The presence of specific antibodies suggests a prior infection, which may or may not still be active.
Fearn says, “If you get a positive blood test, that’s great because there are very few false positives. But, half of the time, people come back with a negative test result even thought they’re infected.” Fearn explains that that’s why a diagnosis should be based on the list of symptoms below, and not always on a blood test result.
Watch Linda Olley’s story about living with Lyme disease for 20 years before receiving a proper diagnosis.
But, there is hope.
Fearn says, “I think the majority, maybe all of the people infected, no matter how long treatment is delayed, no matter how long they’re infected, they can get better, even significantly better. But, the longer it goes untreated, the longer it will take. And, at that point you’re not talking about many weeks of treatment, you’re talking months, even years of treatment. It gets much more complicated, but they do get better.”
Lyme disease symptoms:
Early localized stage (3-30 days post-tick bite)
- Bullseye rash: A red, expanding rash called erythema migrans (EM)
- The rash occurs in approximately 70% to 80% of cases and starts as a small red spot that expands over a period of days or weeks into an oval-shaped rash that sometimes resembles a bull's-eye because it appears as a red ring surrounding a central clear area
- Flu-like symptoms including fatigue, chills, fever, and headache
- Muscle and joint aches, and swollen lymph nodes
Download this symptoms chart (.pdf) to bring to your doctor.
Early disseminated stage (days to weeks post-tick bite)
Untreated, the infection may spread from the site of the bite to other parts of the body, producing an array of specific symptoms that may come and go, including:
- Additional EM lesions in other areas of the body
- Facial or Bell's palsy (loss of muscle tone on one or both sides of the face)
- Severe headaches and neck stiffness due to meningitis (inflammation of the spinal cord)
- Pain and swelling in the large joints (such as knees)
- Shooting pains that may interfere with sleep
- Heart palpitations and dizziness due to changes in heartbeat
Late disseminated stage (months-to-years post-tick bite)
- About 60% of patients with untreated Lyme may begin to experience arthritis, with severe joint pain and swelling, particularly the knees.
- Up to 5% of untreated patients may experience chronic neurological complaints months to years after infection that may include shooting pain, tingling in the hands or feet, and problems with short-term memory.
He says that if you see a doctor that is familiar with the disease, they’ll probably want to put the patient on antibiotics, such as doxycycline or amoxicillin taken orally, just as a precaution even if they are not absolutely convinced that they have Lyme. Fearn says this is because the risk of taking an antibiotic for a few weeks is a lot less than having a case of untreated Lyme.
Intravenous (IV) antibiotics may be used for more serious cases and for someone whose nervous system has been affected.
Lingering symptoms after treatment (post-treatment Lyme disease syndrome)
Approximately 10-20% of patients with Lyme disease have symptoms that last months to years after treatment with antibiotics. The cause of these symptoms is not known, but there is no evidence that these symptoms are due to ongoing infection with B. burgdorferi. This condition is referred to as Post-treatment Lyme disease syndrome (PTLDS).
- Muscle and joint pains
- Cognitive defects
- Sleep disturbance, or fatigue.
Lyme disease prevention video.
Reputable online resources for Lyme disease information:
- PA Lyme Resource Network
- Lyme Disease Association Southeastern PA
- Columbia Lyme & Tick Borne Diseases Research Center (LD research at Columbia University)
- Rhode Island Tick Encounter Resource Center
- LDA-Lyme Disease Association
- Legislative updates: a statewide Pennsylvania legislative coalition
- www.lymenet.org (general information, with many links, including support group listings)
- www.lymeinfo.net (general information)
- www.cdc.gov/ncidod/dvbid/lyme/index.htm (the Centers for Disease Control and Prevention)
- www.fda.gov( the food and drug administration; search for “Lyme”)
- www.medscape.com (this site requires a simple registration, but it is worth it to obtain excellent medical texts that you can give to your doctor if necessary. Search for “Lyme”)