No One Understands Lyme Disease
The sooner experts admit that, the sooner we’ll figure out what’s happening and perhaps prevent a lot of suffering.
Lyme disease exposes how overrated medicine is. People have come to expect modern science to be able to detect and cure bacterial infections, at the very least – and yet for Lyme, a bacterial disease transmitted by ticks, the tests are shockingly inaccurate, and antibiotic treatment doesn’t always take away the often debilitating symptoms like joint pain, fatigue, brain fog and headaches.
Some doctors admit they aren’t sure of the answer.
Others, self-styled “Lyme literate” doctors, are stepping into the void, often diagnosing based on weak evidence and exposing patients to months or years of potentially harmful antibiotic therapies.
Patients suffering mysterious symptoms can be forgiven for gravitating toward those providers who act like they are sure. The unrealistic expectations are part of the problem.
A frank discussion is hampered by outrage and fear. Media reports often emphasize that the disease is on the rise, with 30,000 reported cases a year in the U.S. and an estimate that the real number is 10 times higher.
Once endemic to New England, and named for a town in Connecticut, Lyme disease is spreading west, south and north. Climate change is blamed for its northward climb, but experts say changes in ecology may explain the expansion into warmer southern climates. A loss of biodiversity is favoring the rodents that provide steady hosts for the disease-carrying ticks.
The good news is that most cases are curable with a course of antibiotics. But outrage followed when, in June, a piece in the New York Times tried to deliver that reassuring message. The author using her own 9-year-old son’s case as an anecdote. Some commenters said the story implied that all cases are curable, when in fact a substantial minority report persistent fatigue and other neurological symptoms.
The “Lyme Wars” documented in a 2013 New Yorker pieceare, if anything, even more heated today.
There is documented evidence that symptoms persist in some people. In mainstream science, this is known as post-treatment Lyme syndrome, and researchers aren’t sure why it happens. It might be that some of the bacteria are able to hide in the body, or the infection triggers the immune system into a long-term state of inflammation.
Providers who presume the infection continues sometimes treat people with antibiotics for months or years, even if patients recall no tick bite and never receive a positive test for Lyme. This may give patients a sense of certainty and the support that can come with a diagnosis. But at a high price; these treatments are often paid out of pocket, and long-term antibiotic use can have broad health repercussions.
Lyme disease testing is imperfect. The standard test detects antibodies to the bacteria, not the bacteria itself, and as the New York Times acknowledged in a column following the story of a boy’s recovery, false negatives and false positives can occur. The fact that the test might be wrong means doctors can’t rule out Lyme as a cause of a patient’s symptoms, even if a test comes back negative – but this hardly counts as acceptable justification for jumping to the conclusion that a patient with fatigue or neurological symptoms has Lyme and not one of dozens of other conditions that can cause such symptoms.
False positives bring their own hazards. The Times cited a study done on Air Force personnel suggesting that Lyme was over-diagnosed, and false positives were leading to unnecessary antibiotic treatments.
The website Science-Based Medicine has some informative pieces warning people of the risk that “Lyme literate” doctors might be wrong in diagnosing chronic Lyme disease, especially in people who have never had a known tick bite or tested positive for the antibodies. Unfortunately, one of the authors used the phrase “fake disease” in a tweet to describe chronic Lyme disease. He amended this to “fake diagnosis.” But “fake” is a loaded word; doctors who diagnosis Lyme don’t like being told they’re faking, and patients with terrible symptoms don’t like it either.
Some mainstream critics compare people who fear chronic Lyme disease with those who fear side effects of standard childhood vaccines despite extensive safety testing. This is ironic, because a vaccine for Lyme was approved back in 1998 but failed, financially, over fear of side effects and inadequate fear of the disease. A Lyme vaccine is widely used on dogs, though.
Like a Greek tragedy, this decades-long war turns on stubbornness and arrogance – on the part of those who dismiss suffering of patients who don’t fully recover, and those who deem themselves more “Lyme literate” than equally knowledgeable doctors who disagree with them.
Humility on both sides might allow some progress. And more research could not only clear up the mysteries and disagreements, but would add to our understanding of infectious disease in general at a time when the power of antibiotics is no longer a given, and infections are becoming an increasing global threat.
This column does not necessarily reflect the opinion of the editorial board or Bloomberg LP and its owners. To contact the author of this story: Faye Flam at email@example.com
To contact the editor responsible for this story: Philip Gray at firstname.lastname@example.org
While I would love to take the middle of the road like the author, because it sounds fair, I can’t. I know too much. I live this nightmare on steroids and work with others in the same boat on a daily basis.
While I’m sure some are misdiagnosed with Lyme, trust me when I say there are far, far more being misdiagnosed with something else when they have Lyme/MSIDS, and while taking unnecessary antibiotics is never something that should be taken lightly, I would like to remind people that LYME CAN KILL YOU. So, until tests improve, we must trust the clinical diagnosis because Lyme disease has always been a clinical diagnosis. Painting Lyme-literate doctors out to be cavalier is complete bias. These people have chosen to go down a pot-holed riddled path, receiving even more education that costs them in time and money, and that could put them under the Eye of Mordor, which could ultimately force them to close their doors. They take on much risk in treating us: https://madisonarealymesupportgroup.com/2018/12/15/everything-about-lyme-disease-is-steeped-in-controversy-now-some-doctors-are-too-afraid-to-treat-patients/ I write about my own doctor’s experience after the article. He spent $50K out of pocket to protect his practice and he’s far from alone.
Also, the coinfections that often come with Lyme can look exactly like Lyme.
Please remember, people are rarely infected with JUST Lyme. Lyme is the rock star we know by name, but there are plenty of other pathogens that come inside the gut of ticks. Tick bites also stir up pathogens within us – even opportunistic ones that probably would have stayed in check but didn’t due to an overwhelming cytokine storm after a tick bite: https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/ Excerpt:
For the first time, Garg et al. show a 85% probability for multiple infections including not only tick-borne pathogens but also opportunistic microbes such as EBV and other viruses.
I’m thankful they included Bartonella as that one is often omitted but definitely a player. I’m also thankful for the mention of viruses as they too are in the mix. The mention of the persister form must be recognized as well as many out there deny its existence.
Key Quote: “Our findings recognize that microbial infections in patients suffering from TBDs do not follow the one microbe, one disease Germ Theory as 65% of the TBD patients produce immune responses to various microbes.”
Testing for ALL of it is abysmal. So, while a person may not have Lyme, they very well could have one of the coinfections instead. Mainstream medicine wouldn’t think of this because they have their heads in the sand and wouldn’t even know where to begin. They just sit back and smugly state, “It’s not Lyme,” when it very well could be Babesia, Bartonella, Mycoplasma, or even MCAS, which is common for Lyme patients.
The website Science-Based Medicine actually resorted to bullying and name calling when I corrected some of their information. No, that website is NOT science based. Not at all. They are Lyme denialists, pure and simple. I quickly realized they were not going to accept correction on any level and that their minds are entirely already made up on the issue. The childish and unprofessional intensity they used makes me seriously wonder if they are a front organization for the CDC/IDSA.
And before you roll your eyes – this type of thing is happening all over the place: https://madisonarealymesupportgroup.com/2017/11/02/astroturfing-wikipedia-contradicts-medical-research-90-of-the-time-my-experience-on-linkedin/ Attkisson kicked the giant and they came after her hard after she wrote this.
Unfortunately, the closed mindedness of so many organizations will not allow for this “humility” the author speaks of. It just isn’t going to happen. People have staked their entire careers on the information they are clinging to even as the science is being proven wrong: https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/, https://madisonarealymesupportgroup.com/2019/04/29/is-the-sky-truly-going-to-fall-for-patients-with-the-untreatable-form-of-lyme-disease/.
My advice to the CDC/IDSA/NIH and the website Science-Based Medicine:
“Change before you have to.” – Jack Welch