Tick season is upon us, prompting fresh warnings about bites that can transmit Lyme disease. But in a report published Friday by the Centers for Disease Control and Prevention, a group of doctors isn’t warning about the disease—instead, the group is warning about possible treatments.

Alternative medical treatments for so-called “chronic Lyme disease” are all unproven and potentially harmful—some even deadly—the group warns. That group includes doctors from across the country, including the University of Colorado, the CDC, Yale University, Stanford, and the University of California, San Francisco. In the CDC’s Morbidity and Mortality Weekly Report, the doctors reveal chilling accounts of five patients who pursued such bogus treatments. What followed was years of heart-wrenching suffering, avoidable life-threatening infections, and death.

“Patients and their health care providers need to be aware of the risks associated with treatments for chronic Lyme disease,” the doctors declare. The case reports certainly offer a ghastly PSA.

Murky maladies

All the patients were being treated for what some doctors and advocates call chronic Lyme disease, which is not a well-founded diagnosis. Lyme disease is, however, well-founded; it’s a condition caused by the infection with the spirochete Borrelia burgdorferi sensu lato, which can be transmitted in tick bites. The disease can include the appearance of a skin lesion (a bull’s-eye rash), fever, headache, and fatigue. If untreated, the infection can spread out, causing arthritis, heart inflammation, dysfunction of nerves, or brain swelling. But a standard two-to-four-week course of antibiotics generally knocks it out.

Chronic Lyme , on the other hand, is used by some doctors to tie together a hodgepodge of nonspecific symptoms, including fatigue, generalized pain, and neurological disorders. These diagnoses are sometimes made without FDA-cleared and validated lab testing or any lab tests at all. Some are made despite negative lab results for a B. burgdorferi infection.

Yet many patients—some frustrated and desperate to find a cure for their puzzling ailments—are led by some doctors to believe that they have an active, chronic infection. Those doctors often describe themselves as “Lyme literate,” a self-determined title not indicative of any specialized training. And they often prescribe dubious and harmful alternative treatments.

To add another fold to the situation: chronic Lyme can easily be confused with the recognized condition called Post-Treatment Lyme Disease Syndrome, or PTLDS. This describes patients who have lingering symptoms from a confirmed case of Lyme disease following standard treatment. What causes PTLDS is unclear, but researchers suspect residual tissue damage and immune responses may be to blame—not an active infection.

Questionable cures

Regardless of whether a patient is suffering from PTLDS or believes they have chronic Lyme, all patients should avoid the alternative treatments. In 2015, researchers combed the Internet for all the supposed alternative therapies for Lyme disease and chronic Lyme. They found a lot. There was everything from relatively benign herbal and vitamin supplements, to $13,000 “photon” therapy, heat and magnet therapies, treatments to remove heavy metals, such as mercury, bismuth treatments (which can be fatal), infusions of hydrogen peroxide, and bee venom-based remedies.

One treatment involved blowing gaseous ozone into the rectum or vagina. Another involved drinking a bleach solution, while yet another called on sufferers to drink their own urine. There was also a treatment calling for a coffee and herbal enema.

But one of the most common alternative treatments for chronic Lyme is prolonged courses of antibiotics—sometimes given intravenously for months or years. Like all the other alternative therapies, there is no clinical evidence of effectiveness. But, unlike the other treatments, there’s plenty of scientific evidence against it. At least five randomized, placebo-controlled trials have shown that long-term IV antibiotics don’t help, but often harm patients. Overuse of antibiotics can demolish the body’s communities of helpful microbes, make nasty germs more resistant to antibiotics, and increase the likelihood of resistant, life-threatening infections.

Case reports

For the five chronic Lyme patients the doctors’ group highlighted this week, that’s exactly what happened.

A woman in her 30s with fatigue and joint pain got worse after being given several rounds of oral antibiotics. She was then given IV antibiotics for several weeks until she developed a severe catheter-associated blood infection. She died of septic shock.

A woman in her 50s, diagnosed with amyotrophic lateral sclerosis (Lou Gehrig's disease, or ALS), got a second opinion diagnosis of chronic Lyme. After herbal remedies did nothing to improve her condition, she went on IV antibiotics for seven months. She then developed C. difficile colitis, an intractable intestinal infection linked to antibiotic use. She suffered with the infection for two years before dying of complications of ALS.

A teenager with back pain and headaches was diagnosed with chronic Lyme and given months of oral antibiotics, then five months of IV antibiotics. She developed a blood infection and suffered septic shock. She recovered only after several weeks in the ICU.

A woman in her late 40s tried several rounds of oral and IV antibiotic for fatigue and cognitive difficulties two years after being treated for Lyme disease. She developed an infection that spread to her spine and destroyed both the 9th and 10th thoracic vertebrae.

A woman in her 60s with an autoimmune disease, mixed connective tissue disease, and degenerative arthritis, was diagnosed with chronic Lyme and underwent more than 10 years of alternative therapies. She suffered several bouts of catheter-associated blood infections. These eventually caused abscesses in her spine that required surgery.

“These cases highlight the severity and scope of adverse effects that can be caused by the use of unproven treatments for chronic Lyme disease,” the authors conclude. “In addition to the dangers associated with inappropriate antibiotic use, such as selection of antibiotic-resistant bacteria, these treatments can lead to injuries related to unnecessary procedures, bacteremia and resulting metastatic infection, venous thromboses, and missed opportunities to diagnose and treat the actual underlying cause of the patient’s symptoms.”