WASHINGTON (AP) – Lyme disease can cause serious harm,but so can bogus tests and treatments.
The complexity of diagnosing the tick-borne disease has given rise to an entire industry of unapproved tests and unproven alternative treatments that experts say should be avoided, including lasers, herbal remedies and electromagnets
“It really is a buyer-beware situation,” said Dr. robert Smith,a Lyme specialist at MaineHealth Institute for Research.
there is no one-size-fits-all approach to diagnosing Lyme. Doctors use a combination of visual clues, details reported by their patients and the standard medical test, which has a number of limitations.
When patients show the classic symptoms – including a bull’s eye rash,fever and fatigue – a short course of antibiotics usually resolves them. But a subset of patients will go on to experience months or even years of arthritis, pain and fatigue – poorly understood symptoms that overlap with a number of other medical conditions.That has left an opening for so-called “nonstandard” Lyme tests and treatments. Interest in those products has been amplified by influencers and a growing list of celebrities attributing various health problems to the disease,most recently Justin Timberlake.That might lead patients to spend hundreds or thousands of dollars on bogus tests,which aren’t covered by insurance,followed by unapproved treatments that may do more harm than good. And it’s possible some of them may not have had Lyme at all.
In a recent consensus report from the National Academies of sciences, Engineering, and medicine, Smith and other experts called for more funding and research into the chronic symptoms experienced by some lyme patients.
“The key thing is that these people are suffering and we need to come up with strategies to alleviate that suffering, whatever the trigger was,” Smith said.
At the same time,Smith and his colleagues warn that “profiteering entities” are pushing Lyme products that are “costly,may not work and may cause harm.”
Here’s a look at the established approach for testing and treating Lyme and how to spot unproven alternatives.
The standard Lyme test comes with limits
First identified 50 years ago, Lyme disease takes its name from the Connecticut town where the earliest cases were diagnosed.
The challenge of diagnosing it begins with the standard laboratory test, which comes with a number of caveats that must be carefully weighed.
The bacteria that causes Lyme, carried by certain ticks in the Northeast and Midwest, doesn’t circulate throughout the body. frequently enough it stays in the skin near the tick bite, making it hard
Risks of Unproven Lyme Disease Treatments Rise as False Positives Fuel Demand
A growing number of individuals believe thay are suffering from post-treatment Lyme disease symptoms, far exceeding the expected rate among those legitimately diagnosed with the illness. This surge in perceived cases is driving demand for unproven and perhaps dangerous treatments, according to medical experts. While inaccurate Lyme disease tests contribute to the problem, the real danger lies in the costly and risky therapies these tests often unlock.
The Problem of False Positives and Misdiagnosis
The initial statement highlights a significant concern: the discrepancy between the number of people believing they have chronic Lyme symptoms and the actual prevalence of the disease. This suggests a high rate of false positives in Lyme disease testing, or misattribution of symptoms to Lyme disease when another condition is the root cause.
“The sheer number of people who believe they have these post-treatment Lyme symptoms is orders of magnitude higher than what you would expect among people who legitimately have Lyme,” a medical expert stated.
This misdiagnosis can lead patients down a path of ineffective and harmful treatments.
A Booming market for Unproven Lyme Therapies
A recent study identified nearly 120 clinics across the United States offering unproven Lyme treatments.These clinics often charge considerable consultation fees, sometimes reaching $3,000. The treatments themselves can be even more expensive, with costs escalating to $6,000 or more.
These unproven therapies include:
* Electrical Stimulation: the use of electrical currents to purportedly treat Lyme symptoms. There is no scientific evidence to support its effectiveness.
* Ozone-Based Therapy: Involves administering ozone gas to the body, a practice considered experimental and potentially dangerous by the Food and Drug Management (FDA).
* Hyperbaric Oxygen Therapy: While used for specific medical conditions, its efficacy for chronic Lyme symptoms remains unproven.
The Dangers of Long-Term Antibiotic Use
Doctors are especially concerned about the practice of long-term intravenous antibiotic use – sometimes involving multiple drugs administered over years. While antibiotics are effective in treating acute Lyme disease, numerous large-scale studies have demonstrated no benefit from prolonged antibiotic therapy for persistent symptoms.
Dr. Smith and other experts have reported cases of patients developing severe complications, including life-threatening gut infections, after years of antibiotic infusions. This occurs as long-term antibiotic use disrupts the natural balance of bacteria in the digestive system, leading to Clostridioides difficile (C. diff) infection and other serious health problems.
“There is clearly harm being done to people who are suffering and who, out of desperation, take on these great expenses or can be harmed by treatments that are not proven effective,” Dr. Smith said.
Understanding Lyme Disease and Post-Treatment Lyme Disease Syndrome (PTLDS)
Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. The Centers for Disease control and Prevention (CDC) provides thorough information on Lyme disease, its symptoms, diagnosis, and treatment.
Symptoms of acute Lyme disease can include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If treated promptly with antibiotics, most individuals recover fully.
However, some individuals experience symptoms that persist even after antibiotic treatment. This is known as Post-Treatment Lyme Disease Syndrome (PTLDS). The CDC states that the cause of PTLDS is unknown, and there is no proven treatment. management focuses on relieving symptoms.
The Importance of Accurate Diagnosis and Evidence-Based Care
The rise in unproven Lyme treatments underscores the critical need for accurate diagnosis and evidence-based medical care. Patients experiencing persistent symptoms after Lyme treatment should consult with a qualified physician specializing in infectious diseases or rheumatology for proper evaluation and management. Relying on unproven therapies can not only be financially draining but also pose significant risks to health.
Disclaimer: The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.
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