With summer upon us in earnest, ticks are popping up all over the place. Even so, a growing trend has physicians more preoccupied than the risk of contracting Lyme disease — last Friday, a report published by the CDC warns people about the slew of bogus treatments marketed for the condition.

Image credits Andrea Ajale.

It’s a dark day indeed when the CDC has to protect people from dishonest treatments rather than diseases — but that’s exactly what the center had to do last Friday. Writing in the CDC’s Morbidity and Mortality Weekly Report, a group of doctors from all over the country, including members from the University of Colorado, the CDC, Yale University, Stanford, and the University of California, San Francisco warn that alternative medical treatments for “chronic Lyme disease” are all unproven and very likely harmful — some even deadly.

These doctors recount the experience of five patients who, erroneously or intentionally diagnosed with what’s essentially a made-up condition with no scientific backing, suffered through and from such treatments which in some cases cost them their lives.

Fake Lymes

Now, Lyme disease is a real, well-documented, pretty nasty disease. It’s caused by an infection with Borrelia burgdorferi, a spirochete which uses blacklegged ticks as a vector. Initial symptoms include the appearance of a characteristic “bull’s eye” rash on the skin, fever, headache, and fatigue. If untreated, the infection spreads out through the body causing arthritis, heart inflammation, dysfunctionalities of the nervous system, even brain swelling.

Patients may develop an (actual and recognized) condition called Post-Treatment Lyme Disease Syndrome / PTLDS. Such patients will show lingering symptoms after being cured of Lyme’s, and, while it’s exact cause is unknown researchers suspect it comes down to lingering tissue damage and the way out immune system responds to them — not an infection, and not something which can be cured by antibiotics.

So it’s easy to see why nobody would be thrilled of contacting it. Luckily, its symptoms make Lyme disease pretty easy to spot and two to four weeks of antibiotic treatments usually flushes the spirochetes out of your system.

But capitalizing on that fear are people who advocate for chronic Lyme disease or, as I like to call it, male Bos taurus feces. It’s a wide-net grouping of vague, nondescript symptoms, ranging from fatigue and generalized pain to neurological disorders. Most times, the diagnostic is pinned without performing any FDA-approved lab testing, often without any lab testing at all, for that matter. In fact, it’s not uncommon for the patient to be told he’s suffering from chronic Lyme despite negative lab results for a B. burgdorferi infection. Because what’s a bit of evidence worth in the face of your pseudo-scientific conviction and/or willingness to con people out of money?

Take this pill daily — for years

This is what a blacklegged (deer) tick looks like.
Image credits Fairfax County / Flickr.

Many patients, who are confused by their symptoms often fall for these treatments out of sheer desperation to find a cure to their suffering. Self-described “Lyme-literate” doctors, a term which isn’t indicative of any kind of training (if you hear your doctor say this it only means he’s particularly qualified to be replaced,) convince these patients they’re the victims of a chronic infection and put them on these “alternative” treatments.

What followed was exactly what you’d expect to happen when somebody treats you for something you don’t have in a way that doesn’t work — years of pointless suffering, avoidable infections, even death.

“Patients and their health care providers need to be aware of the risks associated with treatments for chronic Lyme disease,” the doctors declare.

Here’s a short recount of what the five patients mentioned by the authors went through.

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One woman in her 30s showed fatigue and joint pain. She was given several rounds of oral antibiotics, and her condition got worse. She was then administered IV antibiotics for several weeks following which she developed a severe catheter-associated blood infection. She ultimately died of septic shock.

Another woman, in her 50s, who had been diagnosed with Lou Gehrig’s disease (amyotrophic lateral sclerosis, or ALS), also got a second diagnosis — chronic Lyme. She was prescribed a course of herbal remedies, and when these somehow, miraculously failed to cure the made-up disease, was put on IV antibiotics for seven months. This mammoth dose of drugs wrecked her intestinal flora and she developed C. difficile colitis, an intractable intestinal infection linked with antibiotic use. After two years battling the infection, she succumbed to ALS-associated complications.

One teenager suffering from headaches and back pain was diagnosed with chronic Lyme and put on a few months of oral antibiotics, followed by five months of IV antibiotics. She developed a severe blood infection as result of the treatment and suffered septic shock. She needed several weeks’ care in the ICU to recover.

A woman in her late 40s was put on several rounds of oral and IV antibiotics to treat her fatigue and cognitive difficulties two years after being treated for Lyme’s. She ultimately developed an infection which spread to her spine, destroying her 9th and 10th thoracic vertebrae.

The final patient, a woman in her 60s with an autoimmune disease, mixed connective tissue disease, and degenerative arthritis, was diagnosed with chronic Lyme and took more than 10 years of alternative therapies. During this time she overcame several catheter-associated blood infections, which eventually caused abscesses to form in her spine that required surgery.

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Regardless of whether you think you may suffer from PTLDS or “chronic Lyme”, you should avoid these alternative treatments at all costs, the CDC report reads. And there’s a lot of them out there. While the most widely-prescribed treatment are prolonged courses of antibiotics, in 2015 internet-listed therapies for Lyme disease and chronic Lyme ranged from simple herbal and vitamin supplements to $13,000 “photon” therapy, heat and magnet therapies, treatments to remove heavy metals such as mercury, bismuth treatments (potentially fatal), or infusions of hydrogen peroxide. That’s not all! The more exotic treatments included bee venom-based remedies, drinking a bleach solution, your own urine, or a coffee and herbal enema.

Delicious.

As you’ve seen earlier, antibiotics can cause a lot of harm. Their overuse destroys beneficial microbe communities in the body, power-level drug-resistant bugs in your body, and increase the chance of you getting a life-threatening, fully-resistant infection. But, since there’s such a bounty of these alternative treatments floating around, we can only imagine what the effects of some of them are — hint: definitely not good.

“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.”