4 ms·
“Chronic Lyme” is a very challenging topic because it has become a mix of legitimate symptoms (those suffering post-treatment Lyme disease) but also a pseudosci
by PragmaticPulp 5y ago
“Chronic Lyme” is a very challenging topic because it has become a mix of legitimate symptoms (those suffering post-treatment Lyme disease) but also a pseudoscience catch-all diagnosis promoted by bad alternative medicine practitioners.
Contrary to popular belief, the CDC and medical community do actually continue to research the topics of potential Lyme persistence and post-treatment Lyme symptoms. We’re discussing this under the headline about a new Lyme disease vaccine, aren’t we?
However, there is also an out of control pseudoscience/quackery community that has attached itself to Lyme as the go-to explanation for unexplained symptoms. They’re drawn to the theories of Lyme persisting in undetectable ways, which they use as an excuse to diagnose people by vague symptoms alone. There are now a number of well-known scam Lyme disease labs that claim to use proprietary techniques to identify Lyme disease that the reputable labs can’t catch. Virtually everyone who submits a sample to these scammy labs comes back with a “positive” result.
I once tested positive for Lyme using the CDC criteria from a reputable mainstream lab. The specialists I saw did not mess around with treatment as well as follow up, but they did go to great lengths to ensure I wasn’t trying to get in with a pseudoscience or self-diagnosed “chronic Lyme” case. One of them explained that she was inundated with appointment requests from people who self-diagnosed as “chronic Lyme” after reading Internet forums despite multiple negative test results and refused to believe any other explanation. The “chronic Lyme” online communities are a terrible mess of misinformation, but the actual medical community around Lyme treatment is quietly continuing to do good work. It can be difficult to separate the two from the outside due to all of the noise made by the pseudoscience quacks that have attached themselves to the topic.
- kortex 5y agoThat's fair. But I'd rather humor the quackish side of chronic lyme and see some progress being made, rather than lean to the side of dismissing them, along with people with legitimate complaints. The inability to adequately assay Lyme speaks more to how bad we are at assaying diseases, than to the (il-)legitimacy of the disease.
- PragmaticPulp 5y ago> But I'd rather humor the quackish side of chronic lyme and see some progress being made, That would have the opposite effect, because many (or likely most) of them never actually had Lyme disease. That’s the problem: “Chronic Lyme” has attracted too many pseudoscience practitioners who lazily blame everything on undetectable Lyme. They diagnose based on symptoms alone and/or employ tests with known extreme false positive rates while dismissing mainstream tests that have been validated. The more you mix those false patients into the real Lyme population, the more you dilute the real signal from actual patients. Humoring the quackery doesn’t advance the science. If you want progress to be made in a field, it’s important to be diligent about keeping the quackery out.
- babyblueblanket 5y agoThe issue with humoring the quackish side of chronic lyme is that you swiftly get into supposed treatments that are, in fact, quackery or can be actively harmful to patients (such as extremely long antibiotic treatments). So you risk both wasting money and harming people by humoring stuff you know is nonsense.