When it comes to treating Lyme disease, the key to success is early and accurate diagnosis through quality testing. This is often easier said than done, however, partly because of the limitations of today’s standard tests for Lyme disease. The Centers for Disease Control and Prevention recommend a two-tier lab test process that can leave many patients with false negatives, contributing to missed or misdiagnosis.
The Risks of Missed or Misdiagnosis
As with any disease, patients can’t get well unless they know what’s wrong with them and get the right treatment from the right specialists. Unfortunately, Lyme patients go without accurate diagnosis at troublingly high rates: in 2015, more than three quarters of patients went more than six months after the onset of Lyme without receiving a correct diagnosis.
Why is misdiagnosis so dangerous for patients? The risks run the gamut from medical to emotional to financial. If someone infected with a tick-borne illness like Lyme isn’t diagnosed promptly, the disease can languish and develop into chronic health problems, bringing on more numerous and complex symptoms – such as neurological and heart problems – that can be costly, difficult to treat, and even fatal.
Below, find a breakdown of some of these risks of misdiagnosis in detail.
- Correct treatment depends on correct diagnosis.
When treated promptly with the appropriate antibiotics – commonly doxycycline, amoxicillin, or cefuroxime axil – most cases of Lyme clear up completely, and patients return to their normal lives without chronic problems. But as with most diseases, patients must first obtain a diagnosis in order to get the right treatment.
Unfortunately, there are several barriers to diagnosis for many suffering from tick-borne illness. The first has to do with the testing process. The tests for Lyme disease detect the immune system’s response to Lyme-causing bacteria. If the body hasn’t had time to produce enough antibodies to trigger a positive result, a patient’s test results could come out negative even though they have been exposed to the disease. A lack of test sensitivity for early stage Lyme thus contributes to missed diagnosis.
The second barrier to diagnosis has to do with the trickiness of Lyme symptoms. Lyme can present in myriad ways – including fever, headaches, joint pain, the signature bull’s-eye rash, and more – but it doesn’t look the same in all patients. For example, not all patients experience the bull’s-eye rash, or even remember getting a tick bite in the first place. If physicians don’t have Lyme in mind as a possibility, they can miss the patterns in seemingly disconnected symptoms. They may then follow false leads, missing the Lyme entirely and thus missing the opportunity to treat the disease and help the patient get well.
Thirdly, to add to the confusion, it is now evident that Tick-Borne Relapsing Fever (TBRF) borreliae infections also cause Lyme-like symptoms. Doctors have only recently started testing for TBRF infections. IGeneX has the most comprehensive TBRF Immunoblots available.
- The frustrating loop of misdiagnosis takes a toll.
In a recent survey of patients diagnosed with tick-borne illness, IGeneX found that 45% of patients spent more than three years getting an accurate diagnosis. 24% had seen more than 10 doctors while trying to diagnose and treat their tick-borne illness.
As undiagnosed Lyme progresses, symptoms can multiply, spread to different parts of the body, and become more complex. When physicians try to treat symptoms without knowing the root cause, patients can enter into a loop of wrong diagnosis that compounds their health problems by taking a heavy emotional toll, not to mention putting them at physical risk by allowing the condition to worsen.
Let’s say a patient with undiagnosed Lyme goes to their physician about persistent knee pain. Unable to identify an obvious injury or source of the pain, the physician nevertheless sends the patient to a rheumatologist, who then tries to treat the knee in isolation from the disease causing the pain. The treatment does nothing for the Lyme, creating an opportunity for it to develop into chronic Lyme – which can later cause neurological and other symptoms that greatly affect patients’ quality of life.
As if the risk of chronic health problems weren’t enough, the mere process of hunting down an accurate diagnosis causes emotional stress for patients in their day-to-day lives. Many Lyme patients are incorrectly diagnosed with problems that would be serious and distressing on their own – including meningitis, stroke, heart disease, Bell’s palsy and multiple sclerosis – yet the steps they take lead nowhere because they aren’t seeing the right specialists or receiving the right treatment.
A man in Canada spent “more than 50 days in hospital and has been tested for everything [from] cancer to HIV,” and even paid cash for an MRI before finally obtaining positive results on tests for Lyme disease in Germany and the United States (but not his native Canada). Constantly receiving treatment that doesn’t work, trying medication after medication with often unpleasant side effects, and having to advocate for themselves in the face of confusion or doubt, patients sink not only time but energy into a process that doesn’t serve them.
- Protracted diagnosis process costs time and money.
It’s clear from IGeneX’s recent survey that patients who suffer from Lyme disease, Tick-Borne Relapsing Fever, Babesiosis, Bartonellosis, and other tick-borne illnesses risk not just their health, but also serious financial consequences if not diagnosed early and accurately. Not only can patients sink money into false leads, but late-stage symptoms from undiagnosed tick-borne illness can cause unexpected costs. Missed or misdiagnosed coinfections can also add to medical costs.
As in the example of the Canada man mentioned above, patients without correct diagnoses are often forced to battle with insurance companies or pay out-of-pocket for testing and treatment. Even when insurance covers costs, patients can waste both time and money on specialist visits, diagnostic testing, and medication for incorrect diagnoses. The IGeneX survey shows that 35% of patients spent more than $10,000 on tests, treatments, appointments, and other costs associated with their disease.
Beyond initial medical costs, the worsening symptoms of untreated late stage Lyme can lead to unexpected costs. 65% of patients from the IGeneX survey had to quit a job or cut back on their hours because of tick-borne illness, reducing their income on top of their quality of life. It’s clear that missed or misdiagnosis is costly for patients in almost every way.
- Untreated Lyme can develop into long-lasting, life-altering symptoms.
Beyond emotional and financial dangers, the reality is that untreated tick-borne illness puts patients in physical danger. According to the IGeneX survey, 85% of patients suffered long-term side effects resulting from initial missed or misdiagnosis. This can include not just joint pain, headaches, brain fog, digestive issues, insomnia, numbness and memory loss, but also more serious and life-threatening issues like chronic Lyme, nerve tissue damage, neurological problems or issues with a patient’s heart.
One Massachusetts woman who had struggled for years, first to obtain an accurate diagnosis and then to get adequate treatment died in 2017 at the age of 39. Her death certificate listed sepsis as the primary cause of death, and Lyme disease as the secondary cause.
Even when complications from Lyme aren’t fatal, the worsening of conditions associated with untreated tick-borne illness can alter patients’ lives gravely, making it difficult for them to sustain their livelihoods.
Accurate Diagnosis is Crucial for Treatment
With prompt antibiotic treatment, most cases of Lyme disease clear up quickly and completely. But this can only happen if the disease is detected early and correctly diagnosed. In order to ensure the best chances at successful treatment, it’s crucial that patients get tested early at a reputable lab that specializes in tick-borne illness and uses the latest testing technology – like IGeneX. Read about what makes IGeneX testing different today.
