Published July 10, 2017

Miss this week’s show? Get the latest on Lyme Disease by jumping to 12:15 above.

We like to think when we get sick, we can just go to the doctor, get a diagnosis and get the proper medicine and we’re cured, right? But when it comes to Lyme Disease, it might not be so simple.

This week we explored the rise in cases of Lyme Disease across the country and potential techniques for preventing its spread. But in the midst of a boom in the tick population across the nation, an enduring debate about the disease is rearing its head again.

The debate surrounds how the disease shows up in a bitten person’s body. Once a patient has gone through the prescribed treatment, the symptoms go away. They seem cured and can move on with their life — for now. But some patients continue to experience symptoms of the disease, like lingering pain. Where do they go now? We would think back to their doc — but this is where problems start to pop up.

Among medical practitioners, there are two schools of thought as to why some patients experience recurrent symptoms.

On one side of the debate is the Centers for Disease Control (CDC), the Infectious Diseases Society of America, insurance companies, and the majority of physicians. They believe enduring symptoms of Lyme Disease after treatment are the result of an autoimmune response in the body.

Lyme Disease is on the rise, with scientists predicting that a boom in mice populations will lead to a record number of cases in 2017.

As a patient’s body fights harder and harder against the disease, it produces more and more antibodies against the infection. Often, these antibodies go on to attack the patient’s own healthy cells and body systems, producing symptoms mistaken, they say, for those of the disease itself.

But this view is not universally held. Lyme Disease patient advocacy groups, like, the International Lyme and Associated Diseases Society, and the Lyme Action Network, argue the disease is actually a persistent infection that resists treatment.

Amid a rise in the number of cases of Lyme Disease, these groups are becoming more vocal. An Oscar-nominated documentary even attempted to contest the claims of the autoimmune argument. For these advocates and a small minority of physicians, the solution to chronic Lyme disease is a long-term course of antibiotics.

But does chronic Lyme disease exist?

On the CDC’s information page about Lyme disease, they state that “‘chronic Lyme disease…’ is properly known as ‘Post-treatment Lyme Disease Syndrome’ (PTLDS).” Key word: “properly.”

This formal definition of Lyme disease has lasting implications for patients. These terms establish the standards most physicians and insurance companies adhere to. That means it can prove difficult to even get a diagnosis of a persistent Lyme infection when it might not even exist on paper. Insurance companies may refuse patients diagnostic laboratory tests or access to treatment.

It appears obvious that the answer for patients is to find one of the small number of doctors who believes chronic Lyme disease exists. But within the medical community, these “Lyme literate” doctors are often seen as little better than quacks, whose standard of evidence and training in infectious disease is much less rigorous than the CDC. Some have even lost their medical license on grounds that decades of antibiotic treatment constitutes dangerous medical  malpractice.

There are good reasons for cracking down on “Lyme literate” doctors. Long-term antibiotics can develop resistant Lyme bacteria strains, or superbugs. These hardy bacteria withstand existing medicines. After they reproduce, the bacteria propagate an increasingly resilient generation of germs. This makes it hard for the infection to entirely be cured and renders antibiotics useless.

Lyme patients are left in the crosshairs of an intense debate where they seem to suffer the most. Their fates are in the balance, and further research is needed before the problem gets a bigger bite.

Concerned about your furry friends? Remember to check your pets thoroughly for ticks if you live in one of the affected areas. For more on tick control and Lyme prevention, check out this great panel from our friends at WBUR.

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