[polyfractal]

"Chronic Lyme" is notoriously difficult to diagnose because there is very little evidence that it is a real illness. While there is some research on the subject, the medical community still widely believes that chronic lyme is Not A Thing.

You often find chronic lyme being diagnosed and "treated" by alternative medical practictioners, homeopaths, naturalpaths, etc who then prescribe a wide array of untested treatments, batteries of blood tests and panels of ELISA antigen screens which are so cross-reactive that just about anything will show up. More often than not patients are being swindled out of vast sums of money by these alternative "treatments". A quote from the GP article shows exactly this situation:

> I’ve gobbled up herbal tonics, CBD oil, a universe of different probiotics, antibiotics, anti-parasitics, and an endless array of supplements promising myriad purported benefits. Most provided little, if any, comfort.

> [...] many people with Lyme flock to “Lyme literate” doctors (LLMDs), who, citing the unreliability of Lyme testing, are willing to make a diagnosis based exclusively on symptoms. [...] With no scientific consensus on what causes persistent symptoms and how to treat them, such options aren’t covered by insurance, leaving people like me to fund treatment entirely out of pocket. I’ve visited several LLMDs with mixed results. [...] Finding a trustworthy LLMD can be difficult and expensive for Lyme patients. The LLMDs I consulted in New York offered initial consultations ranging from $800 to $2,000, with each follow-up visit costing anywhere between $300 and $500 each.

It's not to say the symptoms are not real, but they are far more likely to be fibromyalgia or similar than a mysterious chronic infection of lyme which is untreatable. Articles like the above and the GP do not help the situation, and people end up believing random woo on the internet than their medical providers.

[shmageggy]

This response misses the point of the article and perpetuates the same attitude that has caused the author and many others so much suffering. The medical community is starting to recognize that there is a gap in knowledge, diagnosis power, treatment options, and general understanding regarding PTLDS. Many of these people don't seek alternative treatments for the hell of it, they do it when doctors have dismissive attitudes like yours.

[polyfractal]

I left a reply on the OP (before seeing this), which links to NIH, CDC and a review of the subject: https://news.ycombinator.com/item?id=20511244

It's not that the symptoms don't exist. It's that the symptoms are almost certainly auto-immune or neurological in nature. There is nothing "chronic infection" about the situation, and thus any attempt to treat it with extended anti-biotics, probiotics, diet restriction, etc are almost certainly destined to fail.

Patients need to spend more time listening to rheumatologists and less time listening to "Lyme Literate" providers selling uninsured woo at $2000 a pop.

[davej]

I don't know whether chronic Lyme is a thing or is not a thing. But there is something going on and medicine doesn't have an answer for it currently. Fibromyalgia is a useless diagnosis. Most of the time docs don't know what's going on so they just a slap a label of CSF or fibromyalgia on it. It means nothing other than you seem to have these list of symptoms.

LLMDs seem to get much better results than traditional docs for people struggling with these symptoms (just based on a bunch of anecdotes that I've heard, not a study). They may have the pathology wrong but for the sufferer it doesn't matter as long as their condition is improving.